# Developmental disorders/learning disabilities/genetic syndromes & more support group



## sequeena

I thought I'd dip my toe into this section, hope you don't mind. My son is still in the middle of having various tests but he has been diagnosed as developmentally behind. Has anyone gone through this with their children? How has the process been for you? Did you get much help and did you find it helped your child? I'm just looking for someone who understands what we are going through. I know no-one who has a child that is 'behind'.

Quick back story;

I had a pre premature rupture of membranes at 14 weeks that resealed at 24 weeks but I suffered with Oligohydramnios throughout my pregnancy. I went overdue, birth was fine no complications. The only 'noteworthy' thing is that my son was born with a 3rd thumb.

At 2 weeks old my son contracted sepsis through a child who had a bacterial infection (did not know at the time). He spent time in hospital, had a lumbar puncture, antibiotics etc but made a quick recovery.

At 15 weeks old he had an operation to remove his thumb and had his first infection, a hand infection.

He's had several infections - chect, eyes, ears, foot etc. He's also had bronchiolitis, norovirus etc. Basically, he gets unwell a lot and goes downhill fast. He's also had a concussion (I was babywearing him and fell over a loose paving stone).

At 5 months old he was referred to a hospital optician because his eyes were turning inwards. This did not bother me as both my OH and I have glasses and eye problems and it runs in the family. At 8/9 months old we were told he had an astigmatism but was not given glasses as eye problems can fix themselves in the first year. At 20 months his astigmatism had corrected itself but he's long sighted so he has glasses.

I've always known he wasn't as fast as other children. He didn't sit until 8 months, crawled at 11.5 months, walked at 17 months and said mum at 18 months. In the grand scheme of things he wasn't massively behind but it did worry me. 

As time went on I relaxed and put it down to children developing at their own pace. Then I had a new health visitor who changed it all. She was worried that he was very behind and referred him here there and everywhere. I was annoyed but went along with it because it wouldn't hurt him.

First he saw a developmental specialist. she watched him play, asked him to do various exercises and told us that he was behind in everything, severely behind in speech and she would need to see him again. She also referred him for a physical exam, a hearing test (he wasn't responding well when she did something with his right ear) and she is arranging a pre school disability teacher to come to our home once a week to work with him.

Last week he had his first speech therapy appointment. It was a group session with 4 other children/parents. They said Thomas is a happy outgoing child but is very behind and they'll be interested to know what happens with his other tests. Even if he's not diagnosed with a condition they said he will need speech therapy in the future.

Whilst I was discussing this with my aunt she told me that my father is registered as disabled (cannot read and write) and my cousin has problems with reading and writing and cannot hear high frequency noises. I did not know any of this when I saw the specialist so I'll have to update her when I see her next.

I admit I'm feeling a little overwhelmed as I was not expecting this outcome. I thought we'd go and they'd say oh he's fine he's still young yet but that wasn't the case. I am not extremely worried about Thomas as I know he's a clever child who hasn't been fazed by what life has thrown at him but I am a bit worried about the future. One step at a time I suppose.

*This thread started out as somewhere for me to get advice but it's evolved. Now it's a group for anyone to get support and advice and to also chat about whatever is going on in our lives. If you have a delayed child you're more than welcome to join* :thumbup:

Our 'members'
sequeena - Thomas is 2 years old, has Global Developmental Delay, Glue Ear, a hypoplastic thumb and hypermobility syndrome. Thumb op 22/10/2013. WTT #2

bumpin2012 - Gabriel is 1 with undiagnosed delay and mama is pregnant with #2! :dance: our first :bfp:!

essie0828 - Hayley is 18 months and has Global Developmental Delay and Diplegic Cerebral Palsy. NTNP#2

RachA - Esther is 3 with a severe speech delay

AtomicPink - Alex is 4, ASD, developmental delay and non verbal. Tori is 2 and has speech and gross motor skills delay

Tiff - Claire is turning 5 in December, she's diagnosed with Autism Spectrum Disorder. She has developmental delays with fine/gross motor skills, and is a flight risk​


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## Tiff

Aww hun, first and foremost massive massive hugs. :hugs: Its so hard to to through the tests and watch them score your child and then hurts even more when they score below.

Claire was flagged at 2 years for delayed speech, at the time we didn't think anything of it. I knew lots of kids growing up that needed speech therapy and as adults are perfectly fine now. It was also something that they never got teased for either - if anything the rest of us were jealous that they got to leave the class to go for speech whereas we had to stay and do work. :blush:

With Claire, she's developmentally behind with I think is caused by her Autism. She has the fine/gross motor skills of a 2.5 year old, and she's 4.5. She can't ride a bike (although we're working on that), cannot hold a pen/pencil properly, and while she sees things and understand them she doesn't possess enough to be able to verbalize what she sees.

She just recently had an OT/SLP assessment and scored in the 9th percentile (well below average). Its so hard to watch IRL or read about friends on here and the incredible things their kiddos are doing and know that she is nowhere near that. I'm sure it'll come in time... but still. Its hard! 

Honestly, when this all started out I thought the same... she'd be diagnosed as speech delayed, we'd get therapy and she'd be on her way. But then with each test came more questions about Autism and here we are.  Not saying that your little guy IS autistic, sorry! I don't want to add to fears and stress... just that I have been there and 100% understand how much it sucks and how hard it is as a parent to sit through.


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## sequeena

Thanks for replying Tiff :hugs:

I'm glad to hear your experience though I admit I've stayed away from autism. I think I'd panic myself if I started googling :haha:

And yes you're right it's hard to hear what other children his age are doing :(

Thomas' development is at the stage of a 1 year old right now, which was hard to swallow but I'm hopeful he'll catch up very soon!!


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## nicki01

Hi! I seen you replied to my post on a similar subject! 
We haven't had any tests or anything done yet as we are still waiting for referrals so I'm not sure where Charlie is at right now but I know she is quite behind!
Just popping in to say i know how you feel, I'm nervous about all this already and I'm none the wiser with Charlie at the mo!
A lot of people keep telling me to stop worrying so much and enjoy my LO for who she is and not to get to wrapped up in all this! 
I know they are right but its hard not to worry about the future!


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## Tiff

nicki01 said:


> Hi! I seen you replied to my post on a similar subject!
> We haven't had any tests or anything done yet as we are still waiting for referrals so I'm not sure where Charlie is at right now but I know she is quite behind!
> Just popping in to say i know how you feel, I'm nervous about all this already and I'm none the wiser with Charlie at the mo!
> *A lot of people keep telling me to stop worrying so much and enjoy my LO for who she is and not to get to wrapped up in all this! *
> I know they are right but its hard not to worry about the future!

I find it so unfair when people say that. :( Obviously I do (and did!) enjoy my kiddo but at the same time you are completely right! Its worrying for the future and knowing how difficult life can be in general without added hurdles for them to cross.


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## sequeena

I've been told that too and I bet they'd be the same if they were in our position. Doesn't mean I don't love Thomas as he is I just want answers and help for him.

Good luck with Charlie x Thomas gets pushed through quickly because of his past. Though today we were told the hearing test is a 1 year waiting list!! So his paediatrician is going to bump him up the list x


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## mummy3

:hugs: You've had a time of it:hugs: Thomas is very cute!

2 of my 4 (so far, 24+5 weeks pregnant atm so nearly 5 kids) have development delay. My 5 year old son has autism and global delay, he's in a special ed preschool and in august goes to an ASD kindergarten with an aide. He has a severe pragmatic speech delay as well as motor skills all at least 2 years behind so gets OT and speech weekly. My 26m old has a provisional dx of rett syndrome and has lost the speech she gained and at her 2 year assesment had expressive language age of 6m, she also has regressing motor skills. She has a speech, OT and infant teacher come to the house every week. 

It can be very overwhelming, all I can say is take it day by day and step by step:hugs:


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## sequeena

Wow mummy3 you've been through a lot. I'm glad your kids are getting the support they deserve x do you know if their conditions are one of those things or possibly genetic? x


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## sequeena

Well I made the leap and joined a special needs group on facebook (based in my area). The people are lovely, they meet up once a week and even offered to pick me and my son up to go to their group.


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## mummy3

We did think at first they would be connected but it seems not so just one of those things. My daughter is much more affected than my son in alot of ways. Getting the right help and as early as possible is invaluble as is meeting with other parents who are there or have been there, the Fb support group will be such a good thing:hugs:


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## veganmama

yes my LO is behind although deep down i dont think there is anything wrong with him, i think he's just slow because of his personality.

some things he still doesn't do now at 15 months are:

feed himself....or eat any solids for that matter
use a sippy cup
say any words
walk
try and mimik any actions i do
follow simple commands like (clap you hands, wave byebye, where is ball)

i've contacted early intervention and waiting to hear back from them, but not because i really believe something is wrong with him. i contacted them so maybe they can help motivate him to want to learn as i dont think he's interested


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## sequeena

veganmama I hope they're able to help you x

Thomas' next speech language appointment is June 18th. I'm surprised and a little worried as they said they wouldn't see him again for months.


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## _Vicky_

My son was diagnosed with a development delay at about 18 months - for him it wA gross motor. He crawled at 21 months and walked at 25 months. He is now just over three and although a bit behind he is fine - he started main stream pre-school a few weeks ago with his twin brother and is now walking/ talking etc. My advice just try andgo withthe flow sometimes they are just really over cautious and it turns out to be nothing xxx


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## sun

My son was diagnosed with Global Developmental Delay at around 20mo (can't remember exactly now) - his delay was in gross motor skills and speech. He was referred quite early because he was flagged due to hypotonia (low muscle tone) and hypermobility of his joints. He was quite delayed with things like getting himself into sitting, crawling and rolling (all at 13mo) and was only a little late relatively with walking, though he was very unsteady for a long time. His speech was a concern younger than 2 because he didn't make any sounds (babbling etc). Had he been babbling they wouldn't have pushed speech until he was around 2 if there was no improvement. His speech was pretty non-existent until around 2.5, got better by 3 and now is much better. It has improved enough that we are continuing with our plan to send him to the mainstream french school in the area with continued speech therapy and help there. 

They still are questioning things like mild autism due to his delays as well as some other things (sensory issues around food, behaviour issues, etc) but at this point he is doing so so so amazing. So much better than I feared at 20mo - he is an adorable and perfect and has so much personality, is so smart and very observant. I do worry about school starting already for him. He is born at the very end of the year which means he is the youngest in the class, so his delays might be even more apparent. But he has always surprised me with his abilities, determination and resilience when it comes to things I worry he won't be able to handle. 

Anyway, am I babbling now? lol All this to say that your son is quite young and you might find that he surprises you. And remember that milestones are milestones no matter if they are early or late - all are deserving of celebration. Hugs to you! :hugs::hugs:

Edit: Also my 18mo daughter doesn't say anything either, but I'm not worried yet as she babbles loads, understands what we say, and communicates well. Her speech would probably be considered at a 12mo level, but I wouldn't agree with that even though she has no words if you know what I mean.


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## sequeena

Thank you both your stories are really encouraging. I'm starting to feel calmer as Thomas is such an outgoing child and always babbling. He's trying to do new things too so that's a bonus!!

Once I know more I'll update :) thank you all though the advice has been great xx


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## rachael872211

Hi, 
My son also has development delays in everything. 
I do feel on a bit of a roller coaster with all the appointments and not really knowing what anyone is thinking! Lennie is being referred to a specialist Health Visitor who can arrange further tests to see if there is a reason behind his delays. So I feel thankful we might find out why but at the same time scared of what they are going to tell me. 
I have a great OH and family but I feel bad going on about it all the time to them. My OH tells me not to worry and is more relaxed about it all where I think I do the worrying for both of us. 
I don't really have any advice because I struggle myself but just thought i'd let you know you arent alone and it really helps to have people who can understand how you feel. xx


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## sequeena

Rachel I'm exactly the same. My oh is so calm and tells me he's fine but I just can't help but think 'what if' and when I found out immediate family have problems too I worried even more!


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## sequeena

Hello everyone, I've not updated for a while but we have a few answers (and lots more questions!!).

Thomas has been diagnosed with GDD. Behind in everything, severely in speech. SALT is going well. He is going to be put into group sessions that do not sign (he is not interested at all).

We're still waiting for Portage.

We saw a medical examiner (for an accident me and Thomas had last February). The GDD was mentioned so one theory is that the accident may have caused it. The doctor has referred Thomas to a paediatric neurologist. I hope we get an appointment through very soon.

Thomas had a hearing appointment today and he has glue ear which explains why his hearing isn't where it should be. The doctor said it's not bad enough to be the cause of his speech delay but if they examined him tomorrow it could be better/worse. They will see him again in 4 months and if the glue ear is still there they will think about grommets.

One other possible theory is that T could have Fragile X Syndrome. It's possible the GDD could be genetic anyway because my dad has learning disabilities himself. We were meant to speak to a paediatrician today but that didn't happen so I'm not entirely sure who to speak to about this. The neurologist maybe? I'm not sure. I'm not going to worry about that for the moment anyway.

We're done with appointments for now, he has a hypoplasia check up on his birthday but that's nothing to do with his GDD.

Hope you're all well!


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## essie0828

Hi ladies. 

Just this past Monday my lil girl was diagnosed as having developmental delays. She had a traumatic birth and has always been a little behind in gross and fine motor. I brought this up repeatedly to her first pediatrician only to be told to "wait and see" several times. The whole time I just had a feeling something was wrong. She didn't master sitting until around 9 months, crawled at 12.5 months, started cruising around 13 months. She cruises and crawls well but still cannot stand or walk unaided. All steps are on her toes :( She is seeing a pediatric neurologist Aug 6. She also has amblyopia and will be seeing an eye doc next Tuesday. I'm terrified she has Cerebral Palsy or Autism. :( We're starting First Steps, its like early intervention, and going through the testing phase of everything. I feel like a fish out of water :nope:


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## essie0828

Sequeena T is a doll. I love the specs(glasses), he looks like such a smart handsome lil man ;)


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## sequeena

Thanks essie :hugs:

Your situation sounds similar to ours. I had a traumatic pregnancy but normal birth. Thomas has sepsis at 2 weeks then a concussion at 5 months (I fell with him) so the doctors don't know if his delays have been caused by the accident, but it could also be genetic as a lot of males on my side of the family had problems reading and writing (my dad cannot read and has lots of trouble writing, my grandfather was the same along with his brothers).

Thomas sat at 8 months, crawled at 11.5, cruised at 14-15 months and finally walked at 17 months. First word was at 18 months.

We're also waiting to see a paediatric neurologist (no appointment yet).

It is very scary, hopefully we can support each other through this :)


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## essie0828

:hugs: You poor guys have had a tough go of it. :( He's a trooper to be the doing as well as he is, im sure you are very proud :)

I had a normal pregnancy with DD. Even worked full time up until 4 days before she was born. I did have morning sickness pretty bad throughout and was in hospital one time a few weeks before she was born for high ketones and dehydration. Just had fluids and monitoring for baby, all was well. Just before she was born, 4days before, my doc says shes not growing well IUGR and needs to come out. C section scheduled for the following Monday. Monday came, get admitted into hospital and then taken to the operating room. Spinal went well, my husband was there filming everything when I started thinking this is taking a long time. I heard a tech say "there's no suction" and everyone got quiet. In the video you can see the suction device come off her head twice. Next thing I feel tremendous pushing and pulling and doc says "fundal pressure" in a very serious tone. A big male tech almost crushes me. Finally DD comes out feet first and her head is stuck inside. He widened my incision and bent her neck straight back until finally her tiny head popped out. She was limp and pale. He took her straight to the other table and started working on her. Oxygen, suction, a fair amount of beating and finally we heard a weak little cry. I heard the doc say "out!"and they started wheeling her out of the room. I told DH to go with the baby and don't leave her. Then I fainted. I woke up a few min later to the anesthesiology guy talking to me. He was squeezing a bag of fluids into me so fast that my arm was numb with cold. I could hear the techs still saying the suction was broke so my doc was closing me up using surgery towels to soak up the blood. They had to tilt me to the side at one point to drain the blood and fluid. It splashed down to the floor in such a horrific mess. In recovery I found out DD was ok. She was still having trouble breathing but they said she didn't have to go to NICU. She weighed 7lb 3oz. I always thought she would have a neck injury from her birth. I constantly spoke with her pediatrician about it and they said she seemed fine. Fast forward to today and everything is not fine. :nope:


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## sequeena

Oh my gosh that's awful :( and seeing how LO was such a healthy weight, unnecessary too! :( I can definitely see your worries around LOs development :( has any doctor said her birth could be a factor/the cause of her delays?

For me the stress came in pregnancy. My waters broke at 14+6 but because I was so early no-one would do anything to help. I was told to rest as much as possible and drink lots of fluids. It was a very scary 10 weeks as I thought I'd go into labour at any time but thankfully at my 24 week scan I was told the tear had healed. I had Oligohydramnios throughout (low fluid, 3cm and under normal is 12cm and over) but Thomas always seemed to be growing well. I was pressured to be induced at 36 and 38 weeks but I refused and Thomas was born 3 days overdue weighing 6lbs 8.5oz. A very uncomplicated labour thankfully, just a long one (4 days). He was born with 3 thumbs that have been linked to genetic conditions so I think his problems may be genetic. Which sucks.

How's your LO doing now? Thomas has just learned to give kisses and is desperate to say daddy (we're getting addy right now).


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## essie0828

Will they do genetic testing on him? It would be worth a look. It will help you know exactly what you are dealing with and how to best treat it. He's a miracle for sure :) We will find out next week if Hayley gets specs like your little guy. I hope she doesn't need them, but honestly I've known her eyes were bad for a few weeks now. Her dads are really bad, hes worn glasses since he was a child. I'm wondering though, how in the world do you get him to keep them on? Hayley will not wear sunglasses at all. I'm afraid if she needs them this will be a War. 

We have had 2 previous fetuses tested for genetic abnormalities and they have found none. This really makes me focus on either birth trauma or ASD as a cause of her delays. Unless her vision is holding her back. But honestly everyone I've shown the birth video to has gasped when he's pulling her out. Her neck was contorted in such a way and she was lifeless. But then it was like BAM she had rallied and was scoring good on apgar and all was "normal". She was colicky for about 3.5 months. We searched every possible cause to be told either, "baby's just cry", or" its colic, it will go away around 3 months". Thinking back now, I think her neck hurt. :( Her first pediatrician, the one who seen her the day she was born was aware of her birth and was helping me to work with hayleys neck as her head was off shape (mild plageocephaly) sp. We used different exercises and positioning techniques to help keep her off one side of her head. Ok fast forward to hayleys 6month appt and this doc is just gone from the clinic. Wtf. Ok go into this whole spill about her birth and plagio and she's growing good and cooing up a storm but not moving much.... she was about 6 weeks behind. New doc says no biggie, her head will reshape on its own when she's sitting more and shes fine give it time, blah blah blah. Ok so by her next visit 9mos she's sitting well. Needs help getting that way sometimes but can sit unsupported for a lil while. Doc says that's OK. She was standing with my help quite well but her ankles turned in weird. Asked Doc for a referral to a orthopedic and he says she just needs to learn how to control the muscles give it time. Ok. Fast forward to 12 mos, still no walking and needs support to stand. Head shape is getting a little better. She jabbers a lot and has mama and papa down. Has tone and inflection changes but words are unclear. Doc says that's OK. Asked again about the orthopedic referral and after looking at DDs legs for a bit agrees to give me one. Hmmmmm, could have done that 3 months sooner. Couldn't get into ortho until MAY! Ok.... Finally get to the orthopedic and he says after a few xrays that her bone structure is fine and that her ankles are just real flexible still. He says that will change in 6mos but she needs to see a pediatric neurologist for her head shape and speach delay! Hold up! What!? Her pediatrician says she's fine! Omg I realize I've been duped. She's not fine. She's behind like I thought. So her next appointment with her regular pediatrician is coming up.....nope not going back to him. Scheduled her into another clinic, she was diagnosed immediately as developmentally delayed. Doc says continue on with the neurology appointment, start First Steps and show the neurologist the birth video :(. 

But as of now... she's semi running with me holding her hands. She's unsteady and all toes but laughs herself silly trying. She will fall to her knees after about 45 ft. Some times she goes farther. She's trying to draw but most movements are choppy and uncontrolled. She still ends up getting the crayon on the paper and several other surfaces ;) can hold a sippy cup although a bit unsteady, crawls well, cruises pretty good. Is very affectionate with me, papa, her grannys. Hugs and kisses on her terms, lol. Good eye contact. Can't use a spoon and pincer grasp isn't great. She tries like crazy but drops stuff. Honestly I'm so confused. Just hoping the neurologist will shead some light. Sorry for the rant.


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## sequeena

Yeah that's what the plan is but it's waiting for everything to happen :( The glasses were surprisingly not as bad as I thought. They're made of like a rubber material so really bendy and they have a strap that attaches to each end of the glasses and goes round the back of his head. He didn't like them at first but is used to it now (just takes them off when he decides he's done with them rather than pulling them off all the time). I was quite upset when they told me he needed glasses but not surprised because both me and his father have eye problems. They really suit him and they've helped quite a lot with his balance.

Gosh, lots of running round in circles - I completely understand that! Definitely sounds like the trauma has caused her delays :( funnily enough Thomas also had plaigiocephaly. He still has a slight drop on the side of his head but it has got a lot better.

As for her feet Thomas also walks with his feets pointed out sometimes. I'm not sure if it means there's a problem or if he's just being a toddler. He has flat feet too (god his problems just seem never flipping ending!!!!!!).

Thomas has only just started using a fork properly and spoons are still hit and miss so please don't panic too much about that. She'll get there, she just has to keep trying.

How's your LO with puzzles? Thomas can't do them at all and doesn't have enough patience/attention to do it which his speech therapists have picked up on.


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## essie0828

As far as puzzles go she is the unpuzzler. Lol. She will dismantle them but rarely puts them together. Stacking toys are the same. She will unstack them but I have seen her put 2 larger stacking cups on top of one another. As far as stacking 1inch blocks....not yet. She will wave her hands and shake her head no if i push her to hard sometimes to. Like no mom im done with blocks and cups and off she goes to something else. But she will sit for stories for a long time. Sometimes I think she gets frustrated having to try so hard.


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## sequeena

Thomas is not good with stacking either, our kids are so similar!

Thomas will bring me books to read to him but as soon as I start he's turning the pages :rofl:


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## essie0828

She's still very mouthy to. She is teething but most everything goes to her mouth. Im sure she ate a bit of crayon on occasion:p And she will eat paper at any chance. She will be sneaky about it to, just to get a little nibble before mom snatches it away. Lol


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## essie0828

Hayley can only "help" with the cardboard books for now. She will rip regular paper and crumple it. I can tell her no and hold the book slightly outta reach and she will just sit and listen. But cardboard books she will get excited and turn the pages fast to. Lol.


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## sequeena

LOL Thomas is the same! He's cutting canines at the moment (his teeth seem to be the only things that happen at the proper time haha) and he can't draw for long because they end up in his mouth :haha:


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## essie0828

He sounds like a fun lil guy :) Does he point? Hayley will look at something and then look at me like "I want that" She will however follow where I point to an extent.


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## sequeena

Yeah he learned to point a few months back. Every morning when he wakes up he points at his bedroom door (as in I want to go downstairs). He also waves when you say bye bye. When it's bedtime I say 'go say night to dad' and he runs over to my partner waving at him :haha:


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## essie0828

Aww that's excellent. Hayley doesn't wave yet. Still working on that. Thomas is doing a lot of good things, he doesn't seem to be delayed very much. Let's just hope they catch up in their own time.


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## sequeena

essie0828 said:


> Aww that's excellent. Hayley doesn't wave yet. Still working on that. Thomas is doing a lot of good things, he doesn't seem to be delayed very much. Let's just hope they catch up in their own time.

You'd be surprised, compared to other kids his age he's very behind especially speech wise.


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## essie0828

Hayley had her eye appointment Tuesday and she was diagnosed with mild amblyopia. We have to patch both her eyes alternating days. So like right eye Monday Wednesday and friday. Left eye Tuesday, Thursday and Saturday. Only for an hr a day though. She's doing well with it so far. No specs for now ;)

How's T?


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## sequeena

Aw bless! I had patches as a child :haha:

He's ok. Not much of an improvement. He did stack a few toys the other day which I was impressed with :D


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## essie0828

Yay for stacking!! Lol. I still have the unstacker on my hands ;)


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## sequeena

Haha T still loves that or he'll just chuck everything!


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## Tegans Mama

Hiya :) Tegan has GDD, she was around 18 months behind last september, she's up for another assesment this year and I am dreading it :( I feel like the older she's getting the bigger the delay. Her speech is quite severely delayed, she doesn't speak as well as my (slightly advanced) 2yr 10 mo old niece and she is five this month. 
She also needs glasses, her vision is quite poor. She is meant to be going into year 1 in September, and I really don't think she's ready. I know I'm not ready for her to go into year 1. 
Basically when she was born we were told she could be anywhere between cognitively normal, and severely learning disabled. Since she already has quite severe physical disabilities and her health is generally poor (she has spina bifida and is paraplegic, doubly incontinent, hydrocephalus, chiari malformation, two clubbed feet, dislocated hips, muscle contractions in her legs), I was really hoping that she would be developmentally average, but it turns out she's not. 
Anyway, I'm really tired but I will be back tomorrow


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## sequeena

Oh that's a lot to deal with :(

Is there a way to delay her going into year 1? I don't think I'd be happy with it either and if T is still delayed by next September I don't think I want him to start either.

Are you getting a lot of support? :hugs:

We had a bit of a break through today. Thomas finally managed to complete a shape sorter. The triangle and star shapes have been a problem for him but he did them today :cloud9:

It's his birthday next week and he has 2 appointments that day. One with his plastic surgeon and one with his occupational therapist. I hope those go well. We're still waiting for a specialist HV, there's around 20 children on the waiting list.


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## essie0828

Tegans Mama :hi: Goodness you do have a lot to manage. It's worth every second to see our little one's happy and progressing though. Will your DD be getting glasses soon? We have to do 4 months worth of patching before we find out if Hayley gets them. Keep fighting the good fight mama ;) it's hard not to get beat down by the worry. :hugs: 

:happydance: YAY! Wtg T for doing the shape sorter. That's great. I've been trying so hard to get Hayley todo them. She will push them through if I start them but cant seem to line them up on her own. Or she will just start banging and clashing the whole set around. :haha: That's usually when she's had enough. 

Awww T is a fellow Virgo. You are going to have your hand's full there ;). My mom says Virgos are the most stubborn people :haha: Poor kiddo having to go to appointments on his birthday :( Mabey he will get extra prizes. ;) Hayley had her dentist appointment today and she had no cavities so I let her have extra sweets today :haha: Plus she got a lollipop and a toy at the dentist.

We are also waiting on an in home evaluation of DD. They said it could be up to 6 weeks :( Her neurology appointment got pushed back as well to the 19th of August. Ughh I hate waiting. 

Hehe I just realized Tegan and Thomas are both celebrating birthdays this month. :)


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## essie0828

Sequeena, if you don't mind me asking, what's hypoplasia? Lol. What I Googled just confused me :wacko:


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## sequeena

Thomas is a leo, same as his dad (same day :haha:) :D

Hypoplasia is just a term for something that's underdeveloped. T has a hypoplastic thumb. His hand grew 2 thumbs (one almost complete, one a fleshy digit with a nail) so when the digit was removed they realised his other thumb hadn't quite developed as it should because it had grown 2 thumbs.

Yay for a good dentist appointment! T just had one too for his jaw (misaligned) turns out it was the dummy :dohh: but thankfully his dentist is very understanding and said it'll fix itself.

Waiting for appointments to come through or having them pushed back is a pain :dohh:

Thomas has lots of presents for his birthday and we'll probably buy him something whilst we're out :rofl:


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## sequeena

Well we had Thomas' report for his Ruth Griffith test through today. He's developmentally 10.8 months old. It sounds worse than what it is. He'll be ok with help.

A cope of the report was sent to the man in charge of special needs schools etc in the area. That has to be a good thing right?


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## essie0828

Aww how sweet he was his dads birthday present. That's adorable. I think it is a good thing his report is being sent up. They will have info on Thomas that will help them develop learning tools and therapy's for him. That's kind of how it works over here to. Once the evaluation report is done.


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## essie0828

I've been in contact with a speech therapist friend of my sister in law. She recommended this website Teachmetotalk.com There's a ton of good info on there and the therapist said you don't need to buy the products. My sister in law is an elementary school teacher and a dang good one at that. She contacted some of her friends concerning Hayley and the occupational therapist suspects she has hypotonia. I'm still waiting on a physical therapist to contact me back but I'm starting to really worry about cerebral palsy now. I'm still waiting for a professional evaluator to come see her but her ASQ score was really low in gross and fine motor. :(


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## sequeena

Thanks for the link essie I'll take a look.

:hugs: hope she hasn't got cerebral palsy :(


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## essie0828

How's T doing? Hayleys getting more teeth, she's chewing anything that doesn't move and is pretty grumpy. Her legs seem tired and achy to :( Gave her a massage yesterday and almost put her to sleep in the process. I think she has a bit of a cold to. She's congested....again. The speech therapist friend recommended taking her to an ENT (Ear Nose and Throat) doctor as well getting a hearing test. I'm hoping that will help to bring her speech around.


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## sequeena

essie0828 said:


> How's T doing? Hayleys getting more teeth, she's chewing anything that doesn't move and is pretty grumpy. Her legs seem tired and achy to :( Gave her a massage yesterday and almost put her to sleep in the process. I think she has a bit of a cold to. She's congested....again. The speech therapist friend recommended taking her to an ENT (Ear Nose and Throat) doctor as well getting a hearing test. I'm hoping that will help to bring her speech around.

Oh bless her :( T went to ENT too and had a hearing test. They found he has glue ear which no doubt affects his speech.

He's ok thanks, still teething. Nothing new happening with him really though at the park he managed to go down the slide by himself :)


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## essie0828

I saw a little girl yesterday that was probably 5 months younger than Hayley doing tons of things that I haven't seen Hayley do yet. My heart sank :( This is starting to get scary.


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## essie0828

Aww. Was he proud of himself for managing the slide? Hayleys learning the light switches. She will turn them on or off if i ask :) She laughs herself silly when she gets it right.


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## sequeena

essie0828 said:


> Aww. Was he proud of himself for managing the slide? Hayleys learning the light switches. She will turn them on or off if i ask :) She laughs herself silly when she gets it right.

He didn't seem to be, he just got up and walked off :rofl: how cute that Hayley does that!


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## essie0828

So with the glue ear does he have to have grommets? Hayley had a bought with ear infection in both ears a couple months ago but her ears cleared up according to her regular pediatrician. I'm wondering if she may have this as well.


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## sequeena

essie0828 said:


> So with the glue ear does he have to have grommets? Hayley had a bought with ear infection in both ears a couple months ago but her ears cleared up according to her regular pediatrician. I'm wondering if she may have this as well.

It depends, if the glue ear clears up he won't need them. Has she only had ear infections once? T's had a few, glue ear is usually because of recurring infection x


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## essie0828

Aww that's funny that he was unimpressed with his new sliding ability :haha:


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## essie0828

She had one at 2 months old that cleared up quickly. Then about 3 months ago she had one that lingered through a whole months worth of antibiotics.


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## sequeena

She may or may not have glue ear, she'd have to have a hearing test and a bone density test thing (forgotten the actual name).


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## essie0828

Thanks! :)


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## essie0828

So DD has another ear infection. I believe this going undiagnosed by a lot of her regular pediatricians, on purpose, because of the new guidelines about ear infections and creating "super bugs". Waiting on a referral to the ENT. I'm sure this is contributing to her delays. She had a really high fever today 103.7 and could barely stand :(. Before she got sick again she was making some progress. She's learning body parts and will stick a sticker on my nose when I ask. Little turkey won't point to your nose but will sure try to cram a sticker up there. :haha: I think her receptive language is pretty good, she understands a lot. 

How's T doing? I love the new avatar pic!! He looks so happy!


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## essie0828

Tegans mama how is little Tegan doing?? Hope you all are getting along well :)


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## essie0828

Aww I tried to change my avatar and its sideways :wacko:


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## Feathers

We're in the same boat. My LO is 23 months old and had a very difficult birth and a hard start in SCBU and has always been behind. Fortunately we've been supported by a wonderful consultant from day 1 of her life who has followed her through feeding difficulties and breathing issues.

Now her main problem is developmental delays (6-9 months behind in over half the areas of assessment) and we've just had our feedback from the big multi-disciplinary assessments with various agencies and found DD is being referred to Inclusion, portage, Speech and language therapy which will include Makaton signing to help her communicate. It's hard to absorb (and I work in education so obviously it wasn't a massive surprise- but harder being on the other side of that meeting) when they talk about getting one to one support in for nursery to help her. She doesn't seem *that* bad to me. Obviously she is speech delayed and has a few...well red flags for me in terms of her behaviour, but nothing terrible so I am surprised at the level of support offered. But in a very good way. 

We're waiting on an MRI scan now to check for brain damage which all sounds very worrying even when we're trying to be positive. She's such a happy and friendly little girl and a diagnosis doesn't change anything. But the side of me that *knows* how it affects your future is definitely worried. 

Anyway, that's my babbling story. well done if you stuck through that!


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## sequeena

Oh no essie! Poor girl :( yes I wouldn't be surprised if she's had a fair few. T has had a load, most have cleared up without antibiotics though so are not 'on the system' as such. Hope she's better soon :( I love your new profile pic she's gorgeous!

Thanks :) Thomas is generally a very happy child, which is why it's so worrying when he turns violent! Today he slammed his head against a shop window because I couldn't pick him up (I'd bought lots of last minute birthday bits ready for tomorrow).

Feathers :hugs: sounds like our children are quite similar. Thomas is 8-14 months behind in development depending on which area you focus on (speech is his worst too). Really hoping her MRI comes back ok and the delay is just one of those things and that she soon catches up.

What is inclusion? We're also waiting on portage. T already has a speech therapist and will be going to group sessions soon without signing as they don't believe he can handle it. I need to write to his paediatrician too to get him referred to a neurologist (well hopefully, it's her call!).


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## essie0828

Hi Feathers :hi: It's great that she is getting intensive therapy so early. With anything neurological, sooner is better with the kiddos. Their brains have amazing capabilities to reform connections. I'm still dreading that talk where they sit you down and tell you that your kid is different :(. I know it's coming though. So what are some of your DD red flag behaviors?? Does she walk yet? 

Thanks Sequeena!! She's my beautiful princess. Thank God she looks like her dad :haha: 
Had a callback today from First Steps. They are sending Hayleys paperwork on through for further evaluation. I'm happy she's finally getting help but really sad that she is that behind. The evaluator said on the phone that she was delayed in all areas :( especially gross and fine motor. Still working on the ENT referral. It's like pulling teeth to get them to write out one :nope: 

Hayley will get a little violent as well when she is frustrated. She will pinch, bite or hit. Oh and pull hair. Ouch!

Happy Birthday T!!! The big TWO! Hope you all have a wonderful day. Let us know how the occupational therapy goes. :)


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## sequeena

It's hard to take in but they will get there with help :)

Well I've set everything up ready for the birthday boy, I cried my eyes out when I put him to bed. It was the last time I held my 1 year old :cry:


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## Feathers

Sequeena- Inclusion is the special needs education team who go into schools and nurseries. They will go in to her nursery and provide support and training for the staff to ensure she gets appropriate targeted care. They also sort out 1:1 support for children who need it in educational settings and basically will follow her through nursery and school etc as long as she needs it. They also provide funding for things. The team told me that as a child with special needs she will get 15 hours of free nursery education from the age of 2 which they will help sort out. (Even though we are usually entitled to nothing lol). And a big happy birthday to your little one!

Essie- yeah it is hard to hear for any parent. However much people tell you that they are who they are, no-one wants to hear those words. But in some ways it is so much better to get the help they need. It's much more difficult to get these things when you are school age referrals. She has only been walking for a month and did have some physio input (her legs and feet are too bendy we found out during that time!)

For me her red flags are her extreme obsession with a few things. She can sit and play for up to an hour alone on something she likes. With no input from me.
Everything has to be done a certain way. She can sometimes be over friendly to people, and other times ignores people entirely when her mind is fixed on something. Just generally when I watch her...in an older child I would be putting in a referral (in my job) for Autism checks. But she is a little too young for that kind of diagnosis yet.


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## essie0828

Feathers that's interesting that you say her legs are too bendy. Hayley is the same. She also walks exclusively on her very tip toes. The child can stand like a ballerina for several min while playing with table toys. Then sometimes she will stand almost on the inside of her ankles with the soles of her feet pointing out to the side. It looks pretty scary. My daughter will also play alone for long periods with something she likes. Cardboard books mostly but she will also let me engage her with something else or she will stop flipping the pages and wait for me to read. But will flip pages and explore books for over an hour sometimes. Thank you very much for sharing some of the things your daughter does :hugs: It helps me to watch for things in my DD and I appreciate that. 

Happy Birthday to Thomas! He will be so happy to see all those pretty presents! Gotta share a pic or 2 ;) Lol no wonder you couldn't pick him up the other day, your arms HAD to be stuffed :haha:

Hayley is feeling a bit better today. Her nose is congested something awful though. If she feels up to it today we are going to have a little family outing :) Dh got the day off :happydance:


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## sequeena

Thank you for the birthday wishes girls. Unfortunately T will be having surgery again in the near future. His thumb has become so loose he runs the risk of loosing the use of it completely. Unfortunately there's a risk that when they do the surgery they'll make his thumb too stiff and he will again lose the use of his thumb. There's a slim middle ground so I hope to God his plastic surgeon gets it right.

Along with the possible grommets surgery I am absolutely devastated. I wanted to avoid this, at least for a few years :(

T has a few red flags too - hand flapping (and making odd shapes with them, bit like sign language but not if you get what I mean?), he's extremely over friendly and can also play by himself in his room for a long time.

Sigh. I wish this would just go away.


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## essie0828

:hugs: Sequeena. When will they be doing the surgery? And possible grommets, will they do them at the same time? I hope everything goes well.


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## Feathers

I'm sorry to hear that. Hopefully they will get it right for him and don't keep you waiting too long because sometimes the worrying and waiting is the worst.


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## sequeena

The possible grommets surgery would be the end of this year or the beginning of next year. Hos surgeon said he wanted the thumb surgery done asap so within the next few months I should imagine.

Well for the first time ever T made a little friend who wasn't his cousins :cry:


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## essie0828

Awww, that's so sweet that he made a new friend. :) 

Hayley goes to the ENT specialist next Tuesday and the referral was for grommets. We call them "tubes" over here. I'm concerned as I don't want her to go through surgery either. :nope: It's really hard to weigh the potential pros with the cons of getting tubes.


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## ellismum

:hugs:I just want to pop in and give you a big:hugs: I have no advice, as you know I'm working through the problems Ellis has and I hope some of the advice I received helps you:flower:


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## sequeena

Sorry essie I've only just seen this, hope the appointment goes well!

:hugs: Thanks Ellismum xx

T just won't sleep I'm at my wits end with him. He has trouble staying in sleep cycles and wakes 1-2 hours after being put down.


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## essie0828

Hi ellismum :hi: How's your little man doing?

Sequeena that sounds like torture and I'm right there with you. Hayley isn't sleeping either. I think her ears are bothering her but she is waking ever couple hours. She actually woke up and asked for a bottle at 3am yesterday :wacko: She hasn't done that in a long time. Took till almost 6 for her to fall back to sleep. Is T getting cranky from waking so much??


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## sequeena

Oh no what a nightmare :( yeah T is cranky because I won't let him sleep past 8am. I'm slowly being driven mad. Last night he screamed and screamed so I gave in and brougyt him into our bed. He started babbling!!! I started crying. It took ages for him to go to sleep.


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## essie0828

:hugs: you poor dear. It's almost like having a newborn again isn't it? Lol, and to think DH and I are considering another one : wacko: HA! Hayley has been napping more during the day so I sleep then. She usually goes back to her schedule in a week or so. Do you know why Thomas is waking?


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## essie0828

Lol. We we're up at 3am and at 6 last night. It's almost 7 and she's not showing any sign of sleeping. Tine for a HUGE cup of coffee.


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## essie0828

Ughh I can't type this early. Lol.


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## annanouska

:flower: I wrote a huge post and the iPad ate it so forgive me if tis is a bit rushed! Hello I've been reading your stories and wanted to share about us. 

Lo is 13 months, can't stand or pull to standing we are awaiting physio for this. H can babble but can't say any words, doesn't follow commands eg wave ( he can wave tho) and he doesn't like interaction with big groups much. He's happy playing and crawling around on his own :wacko: he does smile and make eye contact. He drinks from a sippy cup free flow on his own but can't use cutlery. 

He hasn't officially been diagnosed with anything yet but I'm becoming Increasingy aware he is quite slow at developing than others his age. I know they develop at different rates but I'm shocked at the prejudice I've witnessed even t my son who appears "normal" (sorry). I don't feel he has major issues but undo feel something. Isn't quit right but noody wants to listen. 

I used tomworkmwith special needs children and I think I'm on high alert all the time. 

Btw...t needs a little hat he looks like the milky bar kid in his pic its super cute :thumbup:


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## sequeena

:rofl: everyone says T looks like the milkybar kids. It's those glasses!

He sounds like my LO at that age. T couldn't stand alone or pull up but if you held his hands or if he held onto the sofa he could do it for small periods. Hope he starts coming along soon x

Essie how has the rest of the day been? I've been in a 'blah' mood all day. The only thing I've done really is cook.

There's a fun day on Tuesday at a local country park. It has free face painting and other things so I can't wait to take T!!


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## essie0828

Hi anna :hi: 
DD was about the same age as your lo when I first became concerned. I had no experience with kids but still I knew she was slow hitting her milestones. Every one told me to "wait and see". Somedays I regret waiting. :nope: If you are concerned it's for good reason. 

Hi sequeena! How's the T man?? Did he have fun at the fun day? Hopefully it wore him out and he let you get some sleep.

We had DDs ENT appointment this morning and they have recommended grommets/tubes. :( Her hearing was diminished on her right side and she has fluid built up on that side as well. Surgery is scheduled for September 18. I'm beyond anxious. I'm still unsure about it. I want so badly to help her but there's all these "what if" questions that keep popping in my head. What if it doesn't work? What if they damage her hearing. What if they open her up for worse infections. What if they work and she can walk better? Or speak better. Or God forbid something terrible. Ughh I hate trusting doctors! I absolutely HATE it. 

Btw....lol. Rant aside. Who are the milky bar kids?? I gotta go Google this... I need some cuteness.


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## annanouska

:flower: thanks girls, I felt a bit of a fraud posting here but then its hard for others to understand how frustrating it is. I think I may get his ears checked his hearing seems ok but his ears do look funky and he can often shake his head or hold his ears. 

I'm really proud today, he stood up in the bath himself! Just grabbed the side and stood :cloud9: it felt silly getting so excited when I saw on FB his little fried 3 weeks younger walking but its a big deal for us. 

Sometimes I think there is a bigger issue and other times I thin, he's just slow/chilled/lazy. Nobody really wants to listen to my concerns so I'm going to keep a diary of anything of concern. He always has been "late" to hit milestones I find it frustrating when people with younger Los talk to you like your child is. Freak because they can't run a marathon at 10 months. :haha: 

Sequeena those glasses are cool :thumbup:t does look really happy. Essie, I. Sure the tubes will be worth a try. It's hard to watch them go through it all tho so small eh x


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## sequeena

Once you google the milky bar kid you will understand :haha:

Oh no :( I'm sure her surgery will go fine and she'll be fine :thumbup: I'm amazed you got a date for the op so quick, we're still waiting for T's :dohh:

Annoushka be proud! Thomas did that for the first time a week or so ago, I was amazed :)

The fun day was great. Really hoping for a good sleep tonight but he's not in bed yet :dohh: we're going to the seaside/fair tomorrow so another busy day for us.

Some pics from today...


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## essie0828

Yay for your lo standing up on his own anna! It's a great feeling to see them do new things. :) Being aware and watching is great on your part. He's a little young still and may just surprise you ;) Here's hoping he is one of those kiddos that just takes his time :)

Btw I agree. T does look like a milky bar kid! It's adorable. 

I met with Hayleys First Steps service coordinator Monday. They think she is delayed across the board so GDD. Her proper evaluation is going to be scheduled soon but the consensus seems to be GDD.


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## sequeena

essie0828 said:


> Yay for your lo standing up on his own anna! It's a great feeling to see them do new things. :) Being aware and watching is great on your part. He's a little young still and may just surprise you ;) Here's hoping he is one of those kiddos that just takes his time :)
> 
> Btw I agree. T does look like a milky bar kid! It's adorable.
> 
> I met with Hayleys First Steps service coordinator Monday. They think she is delayed across the board so GDD. Her proper evaluation is going to be scheduled soon but the consensus seems to be GDD.

T has GDD too :hugs: We will soon be starting the process of claiming DLA (a disability benefit) for him. Do you have anything like that in America?

The test they did for T was called the Ruth Griffiths test. They may do the same with Hayley. They test her in 5 different areas - speech, hand eye co-ordination etc. T ranged from 10 months old to 16 months old so quite a bit behind and overall he's 10.8 months old developmental wise (it's all very complicated I don't understand a lot of it).


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## essie0828

Awwww love the pics!! Is that his dad?? Because there is a resemblance :) He looks like he's having a blast. What a fun day! You gotta dress him like a milky bar kid for Halloween sometime. He looks just like them. :haha:


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## sequeena

essie0828 said:


> Awwww love the pics!! Is that his dad?? Because there is a resemblance :) He looks like he's having a blast. What a fun day! You gotta dress him like a milky bar kid for Halloween sometime. He looks just like them. :haha:

Yeah that's my OH :thumbup: he's looking more and more like his dad every day!

I'm stuck between dressing him like the milkybar kid or the 11th doctor!


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## essie0828

I'm not sure of the name of the test but it will be a test in 5 area's just like you said. I'm thinking she is probably close developmentally to T. Mabey even a little farther behind. You know I'm not sure if there is a disability benefit for young kids over here. It would be great if there was because I have put off going back to work in order to see Hayley through this. It's putting a strain on OH to carry all the financial burden. He's really awesome about it though, he works 2 jobs and rarely complains. 

Our healthcare system is pretty different. Sometimes it seems that they push surgery or other costly treatments through pretty fast. It's a little disturbing sometimes but medicine is in no way laid back over here. Aggressive treatment seems to be the norm.


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## essie0828

Ok Googling 11th doctor to, lol. I'm in the dark on that one as well.


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## essie0828

Ha! The suit and bow tie would be really cute......but I vote milky bar kid. He's got the hair, the glasses and I'm sure he will just be the cutest cowboy ever.


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## annanouska

He does look so happy in his pics there. I didn't realise you could get dla for things like gdd that's great will be a real help to so e families I'm sure to give the, the best Help and start :thumbup: 

Essie your lo is very pretty too. Se looks so cute in the avatar. 

Our lo has really surprised us today pulling to standing again on sofa and monkey shuffling ( sooo not cruising!) along. I'm really proud as its such a big leap he's made in 2 weeks. He's still "behind" others but I think that may be how he is :shrug: 

Sequeena when I had my special needs job we had a few children with gdd, I have to say in comparison ( I know we mustn't compare) seems your t is doing really well :thumbup: he always looks so happy :flower: I think it's easy to compare against other chi,drn but we have to remind ourselves how well our Los are doing compared to themselves a few months ago :hugs:


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## essie0828

Anna one of our pediatricians said he never even worries about kids that aren't walking until after 15 months. You little guy has a lot of time left to learn ;) and he is making more progress everyday. That's great!

Hayley walked up all of our stairs today with me holding her hands. :) That's a first for her. She couldn't pick her feet up high enough before and today she sailed up them with me helping her balance. Eeek so happy!


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## essie0828

Btw thank you. I need to get a pic up of her smiling. She looks so serious.


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## sequeena

That's awesome girls glad to know the kids are coming on :)

No change here but we do seem to be getting somewhere with sleep which is a relief.


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## essie0828

Good to hear sequeena. That not sleeping stuff is hard.


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## essie0828

Holy crap I just saw your signature!!!! What?! A bfp! Yay! Congrats!!!!


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## essie0828

You sneaky girl ;)


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## sequeena

:rofl: well its faint at the moment so I hope it gets darker x


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## essie0828

Awww, fx'd it gets darker hun


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## annanouska

:happydance::happydance::happydance:

But no stressing over things as u have jellybean 2 to look after too! :hugs:


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## sequeena

Got a :bfn: this morning so maybe it was an evap. Still no af though.


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## essie0828

:hugs: I had an evil evap on a blue dye test a couple months ago. :nope: I hate those. I hope AF stays away and it's just too early yet.


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## RachA

Hiya

Just wanted to come and add my story. 

Esther is nearly 4 and we were told last Nov that she has a developmental delay. They haven't said its GDD but she is behind in all areas. 
She was referred after her 2 year check as she wasn't really responding to the HV. 

Everything about her pregnancy and birth were normal so there is nothing there (my mum did wonder if there was an issue with the birth as she remembers thinking it took a long time for Esther to cry but the hospital notes were looked into and they say it was a normal time). 
I can't actually remember her ages for sitting/crawling/pulling up to stand but she was late walking-18months-and she took months to walk without looking like she was going to fall over!! Her sitting etc weren't too behind though. 
She said her first word around 18/20 months but then stopped. She babbled a lot so I didn't think there was too much of a problem (my son didn't babble at all and yet at 2 walking talking well above his age). 

Since 2 she has seen the SALT several times (currently waiting on her next block if sessions). 
She is under review at our Child Development Centre-her first appointment out her at 18months behind in speech (the others areas are behind but not as much). He second appointment has put her at somewhere between 12 & 18 months behind so she us improving slowly. She has her next appointment in Nov and this is crucial for us as it will help decide on what school we send her to. They are saying she can go to a 'normal' school but done in our area are much better set up for special needs. 
She has also just come to the top of the Portage list - in dact the portage worker is coming today for an initial meet :)

Esther started Playschool last Sept. she really enjoys it there. She has a SENco worker there who is amazing. She engages well with the adults there but not so well with the children. However in the last 1/2 term she really started engaging with other children 

She had a blood test back in May to see if there was anything genetic and her test has shown up something but they can't say if its affecting her until OH and I have been tested. 

For me personally I think that her delay can be partially attributed to a lack of food. From when she weaned she was a nighare eater. She didn't like anything apart from the Hipp jars of food but I wasn't happy her getting so dependant on them so we cut them out expecting that after a few weeks she'd start eating my food. She didn't and I'd say that at least 12 months went by when she rarely ate more than breakfast. 
From being 10 months to 2 & 4 months she had a few seizures - they definitely were febrile and were looked into but they couldn't find anything wrong. I think that they were induced by the lack of food as they stopped once her diet picked up. 


So currently she's saying lots and lots of words but doesn't say many sentences. 
Her understanding is generally really good. 
She can't ride a bike/trike or scooter. 
She is really good at the little puzzles were you put the pieces in the wooden board (peg puzzles).


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## essie0828

RachA :hi: and welcome :hugs: Hope the meeting with the portage worker goes well today. By the way, what is portage?? Lol. I've seen this term a few times. Is it a special education program? My DD was hard to feed as well. For a while every bite was a struggle, she was in the 30th percentile for weight and that was with me chasing her with food all day. Now she eats better but doesn't feed herself well. I think that's partially my fault from making her eat. I had a doctor tell me kids won't starve themselves and not to worry so much about her eating. I said "You don't know Hayley." Finally she's in the 50th percentile for weight but she still eats like a bird. :wacko:

Sequeena any news from AF or a BFP yet?? I got my fingers crossed for you dear. :hugs: Hows
T doing? 

Hayley is back to waking up a lot. And she's waking up very upset :(. Just crying and crying until me or OH picks her up and rocks her back to sleep. I can't figure it out. She's still taking antibiotics and ibuprofen for the ear infection so I was hoping pain wasn't the issue. I miss seeing my girl wake up smiling :(


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## essie0828

Anna hows your little man doing??


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## RachA

Hi Essie and thanks

Portage meeting went well. Not really sure how to describe Portage. I'm assuming its done the same from county to county but not sure. For us it's basically going to be this lady coming to our house once every 2 weeks. She will play with Esther and then leave little games with us to play with her until the next appointment. All the games are to encourage her to put words with items or put words together to make sentences. Most of it is pretty basic stuff to be honest but for us any help is gratefully received. 

Just looked to see where Esther is on the centile lines and she's just under the 9th! When she was born she was on the 75th but quickly went down to 25th. Then when she wouldn't wean properly she went down so she was hovering between the 9th and 25th. Being under the 9th is the lowest she ever been but she goes actually eat now so I'm assuming she is just burning all the calories off. Both my children are skinny-my son has just turned 6 and us the height of an 8yo so although he's heavier than he should be he is actually very skinny. The both take after my OH who us skinny (I'm not!) and I'm not particularly worried about their weight as long as they are eating!


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## sequeena

Hi Rach good to see you here, hope we can all support each other :hugs:

T is fine thanks! Being naughty tonight and won't sleep!! Thought I had a proper :bfp: earlier but the dye ran! :(


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## essie0828

Hmmm. And still no AF? Mabey you ovulated later than you thought. :dust: Hope you get a good dark bfp soon. 

RachA my OH is skinny as well. Most of his family is tall and thin. I'm tall and not thin at all :haha: So DD will be on the skinny side to. It's easier now that she can pick things up and feed herself. She seems to be keeping steady with her weight and eats healthy. 

Ahh portage sounds like what we have here in our early intervention programs. I will be a bit more familiar with it as DD gets more involved in First Steps. That's our early intervention program.


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## sequeena

T is another skinny minny. On my dad's side they're thin and over 6ft :haha:


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## essie0828

My family are giants lol. I have some great aunts that are closer to 7' than 6' and some male cousins that are 7'. Some of my female cousins are 6'5" and my brother is 6' 5". I'm a shorty in the family at a mere 6' :haha: DH went to a family reunion with me and said he's never seen so many huge people in one spot. :haha: He's the same height as me but we are still dwarfed by most of my extended family.


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## sequeena

:rofl: I'm 5'8" and OH is 5'9" so we're titchy compared to your family! My dad is about 6'4"


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## essie0828

Lol. Honestly when were all in one place people stare. It's kinda funny :haha: My great aunt who is in her 60's is about 6'7 and very light skinned. My mom said she was Gorgeous when she was young and the attention she got was horrible. Like causing a scene everywhere she went. Mom said when she was in hospital in labor with my brother, that she had to walk for hours to help her labor progress. Keep in mind this is almost 40 yrs ago ;) Well she was walking with my great aunt to the cafeteria. Mom said it was really loud in there but within a minute of them walking in the entire place was quiet. Mom said that my great aunt dropped to her knees and said something snarky about if a tall woman makes you that uncomfortable then here! And she shuffled through the entire cafeteria line on her knees! My mom said between the contractions and the embarrassment she was sure she would die. :haha: 

Ok totally off topic but that's one of my childhood favorite stories about my great aunt, bless her. She's a character. Btw I was reminded by her with a firm grasp that it's rude to ask a lady her age, her weight, or her height. I almost peed my pants. I was about 10 :haha:


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## Feathers

Hi ladies sorry to vanish off, I've been a bit under the weather myself and getting bigger now so been taking it easy ;) 

Hope all is young well with your LOs! I'm enjoying the slight break from all the appointments we've had of late! Next major appointment for her is early September which is a nice break from going to clinics and assessments! Because LO is off nursery right now she gets a little break too, but it all kicks back in come September!

We're working on makaton signing with her still that has been emailed to us, and she seems to be picking up a few more words as well which is fantastic! However being off work we've seen lots of her friends and it's a little disheartening to hear them chattering away in ways that she can't. Not that anyone judges her for it but still...everyone wants their child to be normal don't they XD And it's far more apparent when we are with her peers that she has some problems. 

Good luck to you with your hopeful BFP Sequeena! And welcome to the new Mums who popped in here also. RachA- you sound as though you are in a similar place to us with what's going on for LO! We're waiting on portage but have been told it wouldn't be long. Anyway enough waffle, just thought I'd pop in and update :)


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## RachA

Wow all your family are tall Essie. 
I'm only 5ft 1! And OH is 6ft 1-gives me a good excuse to wear heels! Our eldest just turned 6 and he's already up to my boob level so he's definitely going to be tall. Esther is short though but don't think she'll be as short as me. 


Talking about appointments-it is nice having a bit of a break from appointments during the holidays. I do still have a few to attend-mainly ones at our Child Development Centre where a play specialist is working with Esther. They have been really good at working on her concentration.


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## essie0828

RachA my sis in law is 5'1" :) I love seeing her and my brother dance, their height difference becomes very apparent :haha: She's a 4th grade teacher and I like hearing her talk about trying to be stern with kids bigger than her :rofl:

Hi feathers :hi: Congrats on the blue bundle! One of each! You lucky girl ;) And yay for new words! Go Olivia! I got to Google this makaton signing. DD is starting to use gestures more and this may be a way to get her to express more words. Thanks! Hope you feel better :hugs:

Sequeena any BFP news????? :dust: 

Hayleys neurology appointment is Monday. I'm a nervous wreck about it. I go from being wound up about it and wanting answers to just wanting to run and hide from it :nope: I think they will want to send her to get a MRI. She will have to be sedated for that and I don't like it :nope: I hope I don't break down into a blubbering mess in there. I hate crying in front of doctors but when it comes to my baby girl I just can't hold it in.


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## sequeena

Great news Feathers :hugs:

And I agree, yes it is lovely to have a break from appointments! I for sure know he needs to go back to ENT in November and he'll see his paediatrician around then but I'm not sure when his op will be or when he'll get his new hv, portage etc.

Essie :hugs: it's hard. She will be ok though. It'll be over before you know it.

Thomas said mummy!! I am so happy! :happydance:


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## annanouska

:happydance: bet you are so chuffed with being called mummy :hugs: 

Appointments are fun here I still have weekly physio from my broken pelvis and nerve damage in labour with nobody to watch lo so its just a nightmare he gets so agitated. Then add n his appointments too :nope: 

Hope the neurology appointment goes ok :flower: xxx


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## RachA

Essie-hope the appointment goes ok. 
Re the MRI-yes you'll cry but it is over fairly quickly and lo won't remember anything about it. 
Esther had one last year and it was awful-for me that it. I was with her when the put the mask over her mouth and she looked so confused, then she just went to sleep and I burst out crying!! The lady said that pretty much every parent cries. 
After that the worst thing was that it took ages for her to decide to wee (they like them to wee before they let them out of hospital). We were waiting for hours!!


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## Feathers

Did she go fully to sleep for the MRI or just sedated? Her consultant told us she would just be sedated? I suppose...it needs to be done though.


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## essie0828

Hi ladies. 

Well our fears and suspicions were confirmed today. My beautiful baby girl has diplegic cerebral palsy :cry: We have an option to get an MRI but it won't change the diagnosis, it will only help me prove a malpractice claim should we choose to go that route. The neurologist diagnosed it very quickly. I have always suspected that these doctors knew what was wrong but wouldn't tell me. :nope: She had X-rays taken of her skull today and we are waiting on an appointment with the plastic surgeon for a helmet to help with the plagiocephaly.


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## sequeena

essie0828 said:


> Hi ladies.
> 
> Well our fears and suspicions were confirmed today. My beautiful baby girl has diplegic cerebral palsy :cry: We have an option to get an MRI but it won't change the diagnosis, it will only help me prove a malpractice claim should we choose to go that route. The neurologist diagnosed it very quickly. I have always suspected that these doctors knew what was wrong but wouldn't tell me. :nope: She had X-rays taken of her skull today and we are waiting on an appointment with the plastic surgeon for a helmet to help with the plagiocephaly.

Oh honey. I am so sorry, I don't know what to say :cry: did they explain what can be done to help (apart from the helmet)? I am so angry for you that it's taken this long to get a diagnosis and a straight answer!! :hugs:


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## sequeena

Who has facebook? We could keep in touch more that way I think/offer more support. This is mine if anyone wants to add me; https://www.facebook.com/sarah.woolcock?ref=tn_tnmn


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## essie0828

Sequeena thanks for the support dear. :hugs: 

The neurologist said the helmet probably wouldn't improve her symptoms. It's an aesthetic thing mostly. The treatment for CP is basically what we have already started doing on our own with the First Steps program. Therapy to improve her cognitive function and motor skills is our best bet. The more the better. CP is basically brain damage but children have an amazing ability to "rewire" their brains. The damage will always be there though. Since she is now technically disabled :cry: we qualify for more help and have access to more programs. That's a good thing but it's sooooo hard to even say that my daughter is disabled :cry: That word literally chokes me. Seequena I have Facebook I will add you soon. Btw. None of my family except my mom know Hayleys diagnosis yet. We are kinda keeping it on the down low for a while.


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## essie0828

You should be getting a friend request from Hayley soon ;).


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## Feathers

Oh I'm sorry to hear that :( I suppose the only bright side is that you have a diagnosis and hopefully they can move towards helping your LO properly now. Early intervention can be a massive help with these things so hopefully they support all falls into place for her and can make as much difference as possible in these early years. 

I'll send you an add on FB Sequeena so you'll get one from Ariana soon.


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## sequeena

:hugs: OK you cry, hit pillows whatever. Tomorrow is a new day. Now you know what the problem is you know how to combat it. She will still lead a good, full life :hugs:

Hi Hayley :wave: Don't worry I don't comment on fb unless someone mentions it themselves x


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## RachA

Feathers said:


> Did she go fully to sleep for the MRI or just sedated? Her consultant told us she would just be sedated? I suppose...it needs to be done though.

Esther went fully to sleep for hers. Tbh I think I'd rather that than the sedation. Esther came round pretty quickly afterwards. There was a little boy who had one done and he was sedated. Because the sedation is for x number of hours-I think usually around 4-he was out of it for ages. He went down before Esther and was still sedated for about 2 1/2 hours after we got back and when he came round he was really doppy still.


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## RachA

So sorry Essie :( 
Honestly don't know what else to say.


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## RachA

I tried the link you posted sequeena but it didn't work.

Eta-done it now. There should be a request from Rachel


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## essie0828

annanouska said:


> :happydance: bet you are so chuffed with being called mummy :hugs:
> 
> Appointments are fun here I still have weekly physio from my broken pelvis and nerve damage in labour with nobody to watch lo so its just a nightmare he gets so agitated. Then add n his appointments too :nope:
> 
> Hope the neurology appointment goes ok :flower: xxx

Broken pelvis! Omg you poor thing. :( I had physio when I was younger, I can't imagine adding in DDs appointments on top of that. Most of your days would be spent in a car :wacko:


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## essie0828

Sequeena loving the pics of Thomas. He really is a doll! When he takes off running from you in the park I :rofl: then ran in and showed DH. Ha! I love that.


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## sequeena

He's a flipping loon!

Today we had a new sort of tantrum. Screeching, going really stiff (but standing up) and digging his fingers into his palms :dohh:


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## essie0828

Aww. He must of been pretty agitated over something. Hayley does something similar if I don't let her have my phone :haha: 

The last few days she has taken to biting :nope: I have no idea how to make her understand that it's wrong. Although I'm probably encouraging her by laughing hysterically when she gets DH . Man she can leave a nasty mark if she gets angry though. Ouch! She played with a beautiful little boy at the X-ray place yesterday :cloud9: She tried to pet him like she pets our dog though :haha: That's an improvement though, she usually ignores other little ones.


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## bumpin2012

Following

My little guy is showing signs of delays. He's only 15 months, so they wont see him for "official assessments" until he's 2.

He's been consistently behind his peers by about 3-6 months with the most significant delays in speech and communication. I managed to get him seen for a hearing assessment at 13 months, which he 'failed' We are waiting for auditory brain response test which is scheduled for September. 

At almost 16 months, he doesn't have any words. In the past 2 weeks he's started babbling "da da" but never in context. He doesn't know his name, or have the ability to follow any simple commands.

I am hopeful that his hearing test will reveal something to blame his delays on, but I am prepared to hear his hearing is normal.

DH, on the other hand, is not prepared for any of this. He's still trying to ignore the signs. 

Does anyone have tips for getting DH to take his blinders off?


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## essie0828

:hugs: bumpin and welcome. That's horrible that they won't assess him until 2. How's his walking/ crawling? If he's coming along nicely with those it could just be his hearing :hugs: I'm sorry you are so worried without answers. Been there. Horrible feeling :nope: I posted a website quite a few pages back. I think it's Teachmetotalk.org. I could be a .com tho. But that site is great! I used stickers and taught Hayley to point to my nose in no time :happydance: The site was given to me by a speech language pathologist friend of my sister in law. She said it was the best online resource for speech therapy she knew. It's a little technical and there's TONS of info there. Btw I found out that stickers are magical toddler currency for speech therapy from that site ;) There are tons of things you can do with your little man at home that will help loads! Hayley has developed a couple new words in just a few weeks of me implementing what I have learned from this site. But honestly her gross motor and fine motor skills are her worst areas. She's definitely GDD from the CP but speech is improving. She's also over a dreadful ear infection so Im sure her ears were playing a roll in her speech delay. Keep seeking treatment for his ears as adamantly as you can. That may really be an issue.


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## essie0828

Oh and as for your OH. Oh lord hunny, men freakin baffle me :haha: I had to just let my OH start asking questions and then we researched it together. If he's totally refusing to see an obvious problem, it's probably denial...best leave him to it. That's a part of the grief process dear, which means he Does see something is wrong. :hugs:


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## sequeena

T is a biter too. It's really frustrating. He will bite me even when he's not angry. I have a lot of bruises! :dohh:

Hello bumpin, welcome to the thread x sorry to hear your LO failed his hearing test :( hope it improves by his next test! Keep pushing for testing if you can. T had his GDD diagnosis before he was 2 as he was delayed in everything and also has eye problems/genetic abnormality problems.


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## bumpin2012

thank you so much, ladies. it's so nice to have someone to talk to. dh just isn't in the same page as I am.

Gabriel sat at 9 months, crawled at 11.5 months and is currently standing for several minutes unaided. he's attempted a few steps, but falls after the first. socially, he's a flirt, and he was seen for an initial assessment at 10 months. he's being followed, but the wait list for a developmental pediatrician is over a year. if his abr comes back perfectly normal, w e will likely be pushed ahead for assessment.

I feel like we're in limbo. I don't know how to help him along, I keep doing the normal stuff wondering if I should be doing something else, but have no idea where to begin

thank you, Essie, for the webpage. I'll have a look at it, maybe it will help me learn a few ways to maximise his communication. 

what kind of testing did you ladies have to diagnose GDD? I don't even know what's coming down the road beyond this hea ring test. were any of the tests painful?


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## _Vicky_

bumpin2012 said:


> thank you so much, ladies. it's so nice to have someone to talk to. dh just isn't in the same page as I am.
> 
> Gabriel sat at 9 months, crawled at 11.5 months and is currently standing for several minutes unaided. he's attempted a few steps, but falls after the first. socially, he's a flirt, and he was seen for an initial assessment at 10 months. he's being followed, but the wait list for a developmental pediatrician is over a year. if his abr comes back perfectly normal, w e will likely be pushed ahead for assessment.
> 
> I feel like we're in limbo. I don't know how to help him along, I keep doing the normal stuff wondering if I should be doing something else, but have no idea where to begin
> 
> thank you, Essie, for the webpage. I'll have a look at it, maybe it will help me learn a few ways to maximise his communication.
> 
> what kind of testing did you ladies have to diagnose GDD? I don't even know what's coming down the road beyond this hea ring test. were any of the tests painful?

Just wanted to jump in - my son was about 6-12 months behind they did nothing but watch and wait he had a bit of Physio as he had double jointed ankles but other than that nothing. Sam is now 3.5 and behind in gross motor still (he didn't walk till just over two) but everything else he has caught up. He is fine - so sometimes they are just taking their time. 

Sam has had assessments called a schedule of growing skills which if you are in the UK your LO should get - these cover nine areas and give you an overall picture they are all play based and not invasive at all let alone painful (like stacking blocks, drawing a picture, doing a puzzle etc)

Xx


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## bumpin2012

we're in Canada. :)

when we were initially seen, she did say that they would wait and see. we've been keeping an eye on his progress using the ages and stages questionnaires which ifs likely very similar to the assessment tool you mentioned. he's always scored low, across the board. she did say that most kids identified as being behind, will catch up by age 3, and it's considered a normal variation in a development schedule, as long as he continues to progress. 

he's progressing in all areas except for language and communication, he's now fallen from being 3 months behind, to about 10 months.


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## nearlythere38

Hello everyone

Sequeena i recognise your bnb name from when i had my son!! He was born 31st aug 2011 but was due i sept so we probably were in different groups.

I now have another child, Ava is 15 weeks so a bit early for development delays but she is having some problems. She has low tone in her neck and upper body, which is resulting in head lag and flopping backwards/forwards. She protrudes her tongue, which is unknown why as yet. Weve also just found out she has a vision problem, possibly linked to a brain problem and are awaiting further tests. She just smiled for the first time at 15 weeks, is not followin things, grasping or batting at objects etc. All ot which my other children were doing by now. Its a very scary time and such a slow process waiting for tests and rsults. X


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## sequeena

Oh congrats nearlythere yes I remember you :hugs: I hope they're able to give you answers soon. It must be scary especially in such a young baby.

Well af arrived!! Very disappointed but what can you do?


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## RachA

bumpin2012 said:


> we're in Canada. :)
> 
> when we were initially seen, she did say that they would wait and see. we've been keeping an eye on his progress using the ages and stages questionnaires which ifs likely very similar to the assessment tool you mentioned. he's always scored low, across the board. she did say that most kids identified as being behind, will catch up by age 3, and it's considered a normal variation in a development schedule, as long as he continues to progress.
> 
> he's progressing in all areas except for language and communication, he's now fallen from being 3 months behind, to about 10 months.

I know it's hard not to worry but can I just say that your lo is still young. At your sons age my son also wasn't talking. He didn't babble at all but by the time he was 2 he was a right chatterbox. My daughter on the other hand has always babbled a lot but she's just never really transposed the babble into words until recently. 
Obviously you have other concerns as well but communication is really sure a diverse thing-some children seem to talk really early yet it's still within the normal range for them to only have a few words at 2 years.


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## bumpin2012

Thanks RachA, your experience definitely makes me feel less worried. I really do hear what you are saying, I've said it to myself countless times. Worried is definitely how I am feeling, but I am trying not to panic.

He's my only child, and until I had him, I really hadn't much interaction with children. I joined a mom/baby group with all the babies around the same age. I started noticing him falling behind, but I always chalked it up to him being one of the youngest. It wasn't until I started seeing babies that were much younger doing things Gabriel had yet to do, hence getting him seen.

Nearlythere :hugs: Im sure everyone here understands the feeling of having a sense that something isn't right and waiting. Im in the same state, waiting for tests, and its soooo frustrating!


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## essie0828

Sorry AF got ya sequeena.


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## bumpin2012

sorry af arrived Sequeena. how long have you been ttcing?


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## essie0828

I need a rant. Sorry in advance ladies.

So I have been pouring over LOs medical records and I'm just depressed really. Her birth records are really inaccurate :nope: I'm really confused as to why. Her nurses notes say her initial apgar was 2, but the obgyn delivery/surgical notes say her initial apgar was normal. 2 is not normal. The surgical notes say she was delivered in vertex position, but she was not. I was there. That baby came out butt first and her her head was stuck. I am so disgusted at these discrepancies. I feel so guilty. I should have done a thousand things differently :cry: I should have went to a different hospital :cry: A different OB :cry: I should have been healthier :cry:


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## essie0828

Hi ladies :hi:

Lol came on here earlier to rant, got halfway through and my phone ate it.:dohh: That's so frustrating. 

So long story shorter. I'm depressed tonight from pouring over LOs birth records :cry: They are so inaccurate. :nope: I feel so guilty. I should have done so many things different. I shouldn't have went to that hospital. I should have been healthier when I was pregnant :cry: Don't get me wrong, I never drank, smoked, did drugs, but I'm a fatty:cry: This has just been a tough week. Thanks for listening.


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## essie0828

Omg my phone didn't eat my original rant :dohh: :rofl:


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## bumpin2012

oh, Essie...Rant away. I know I have many of the same guilty feelings. Im not sure if it helps at all, but your weight likely has/had nothing to do with LO's complications, both during delivery, or as a result of an "unhealthy" pregnancy. Babies are literally mini parasites and suck all the good out of us, regardless of much of the junk we put in.

Major :hugs: regardless. I dont know about the discrepancies. Perhaps its just a discrepancy in wording? Perhaps they used the word vertex and meant vertical. I am guessing that it would be far too late to get that clarified.


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## RachA

Hugs Essie. I agree with bumpin-your weight more than likely didn't factor in your complications. Sometimes you just need to get your frustrations out. And sometimes you can see issues where there are none (not saying that's your case as obviously there are discrepancies in your notes) - when it became obvious that Esther was behind and she was started to be looked at my mum felt so guilty. I'd gad a totally normal pregnancy and my labour was how it was supposed to be. I was freaked out due to the complications I'd had during my labour with my son but I was doing everything I was supposed to. After the birth my mum said that she didn't think Esther cried for ages and so she worried that this was what caused her delay (ie lack of oxygen) but all the notes tally and her apgar etc were totally normal too. I guess what I'm saying is that even when things went to plan you can still manage to blame yourself for your child's lack if development etc. 


I was having a crisis yesterday too-Esther is doing well at adding new words but she only seems to be saying one word. She has a couple of sentences (2 or 3 words) but that's it and I was worrying last night that she's only going to be able to communicate in one word sentences.


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## sequeena

Essie, it sucks but you did nothing wrong. Seriously, how would your weight affect what happened? The doctors discrepancies are that - theirs! You were in labour which is hard enough without trying to predict what will happen and trying to make sure things are absolutely perfect. Give yourself a break.


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## annanouska

:flower:bumpin our lows are similar ages and its amazing how quickly they can bounce along. 

Essie, I was 99.9% certainly bigger than you in pregnancy, I was told I WOULD have a huge or tiny baby, I WOULD get high bp and pre eclampsia. I didn't get anything, I had a really easy pregnancy but very hard birth due to moo getting wedge, pelvis breaking and I think my pcos somehow prevents me from responding to labour hormones coz I didn't at all!ni don't think any of this in my case co tributes to how he is, I think he is just not eager to develop too quick! 

What are your main concerns for her at the minute? She is still quite young I've every faith things will get better :hugs: 

How are the other children and parents doing? 

Rach, a family friend's lo is dyspraxic and didn't talk at all until he was almost 4. It improved bit by bit and now as a young teen you wold never know. 

I think a lot of it is thE guilt and frustration as parents. It's upsetting seeing other children, other people asking what's wrong or looking at you like your baby has 5 heads and is neon blue :dohh: 

Xxx 

Things are ok for us right now, his speech is non existent but babbles a lot. Today he sat up and said dude. Cear as day, no idea how he got to that as its not a word we use but it made me laugh. We are working hard on behaviours and things look a bit better. The feet....different story. Still waiting on his referral. He can stand and semi cruise but those ankles can't stabilise enough for him. I have him bare foot but dunno if he would benefit from boots, still waiting to fi d out. Xxxx


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## essie0828

Thanks ladies. The morning light makes things look better. Her records are still a mess but who cares. She's here, she is who she is, and I love her :cloud9: 

RachA on days that they stall out with their development it's hard. :hugs: I'm sure Ester will gain her sentences. It just may take a little while longer. Hayley had a "floppy" day yesterday :nope: Those days bother me. Those are the days I can really see the CP shining through. I think another cold or ear infection is coming on. Her development always lags if she is unwell. Maybe Ester is coming down with something to?? Or probably just having an off day. 

Thanks bumpin :hugs: How's your little man doing?? I love the pic of him going after that leaf! Ha! He looks so determined. :haha:

Sequeena how's T doing today?? Is his sleep better?? Has he caught a swan yet?? :haha: In his pics you can tell he wants to get his hands on one :) He's too cute.


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## essie0828

Anna I think my biggest concern is DD's prognosis. It's so varied. She could be slightly affected or she could be quite impaired. I worry if she is having pain or if she will have pain from this in the future. Ugh just not knowing really. 

Anna I was concerned with DD's ankles when she was about 12 months. We saw an orthopaedic specialist who told us that at her age shoes or boots didn't matter. That the young kiddos just need to build their muscles and learn where to put their feet. That being said, I still bought DD a pricey set of high tops hoping it would help. It didn't. Your little man may be different. But I do know that there's no harm in trying them if you want ;)


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## essie0828

He said dude. :haha: love it! DD has spontaneous words sometimes. I'm sure she said "bullshit" in the car a few months back. I would have totally chocked it up to my imagination if DH hadn't been sitting with her. He heard it to. Plainest word I ever heard her speak :dohh: I'm blaming DH for that one. :haha:

We have yet to hear it again. I'm kinda thankful for that.


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## bumpin2012

hahaha, I love hearing random words. I babysit my friend's 19 month old girl, and I randomly hear " oh shit" when something isn't going her way.  

Essie, my Sil was close to 400 lbs, ate like crap, did some pretty selfish things during her pregnancy, and her little girl is perfectly normal. her only issue is having idiot parents. ( but that's a WHOLE other rant)

It seems like things would be easier to cope with, if we had something to point to and say " this. this is why my child is struggling" I remember a convo my best friend had with a chi worker, whose son was born with downs. I remember her saying that " God only gives special children to the people who are special enough to earn them" and I really do think that's true.


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## essie0828

Aww bumpin that's really sweet. Ty :hugs: 

I was 270 when I fell pregnant with DD. I am 6ft tall and I have always been big but healthy. Had a full athletic scholarship to college, always been able to do physically demanding jobs but always classified as obese. It just sucks. I've always been uncomfortable in my own skin and this makes it worse. And stories like your SIL are everywhere. My husbands little cousin was born addicted to all sorts of drugs and had to be removed from her mother yet developmentally she's normal. I wouldn't even take my antidepressant or anti nausea meds :nope: Ughhh. You have to be right. She was born to me and DH because we needed her and she needed us. ;)


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## essie0828

Anna it will take me a bit but I will put up some pics of Hayleys feet and ankles when she stands. Also I will try to add a video of her "gait". She has the classic diplegic cerebral palsy walk. You can compare what you are seeing in your little one. He's still very young and likely to just be gaining his strength so you have to use your best judgement. But you are obviously concerned. I diagnosed DD myself at around 15 months by Googling, watching you tube videos and watching for other little kids that did what Hayley did.


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## annanouska

I got him some "cruisers" today, not that inthinkntheynwill help his feet but I'm fd up of the cuts and muck when at the park! He actually kept them on and can still crawl and stand. Tbh I think it is what you say he needs to learn where to put his feet...he can do it but doesn't always. It looks far worse in shoes tho seems to make it stand out! 

Essie I think it's going to be a wait and see journey and watching her blossom along the way. There's not much age difference between our Los and she is dpi g so very well. 

Sorry to bring this up but I read on the news here today about a family in Canada who got a letter being abusive over their autistic child and he should live in the wild etc :nope: couldn't actually believe that!! Drunken weirdos can go live in the wild for me :shrug: 

Hope nobody minds me popping in here? I feel a bit bad as lo is quite lucky compared to the other children in that I'm sure it's not a major problem but still its nice to talk with people who understand the delay frustrations xxx


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## essie0828

Anna I'm sure no one minds :)


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## bumpin2012

Anna, I feel a bit the same. I am hopeful that he will continue to progress, and that his delays wont impact him later on in life. I do feel though, that you ladies can understand the worry and frustration that comes along with waiting.

We had some of G's "friends" )really, my mommy friends with boys close in age to G) and he is officially the only non walker of the group. The youngest of the group, who just had his birthday has been walking for a few weeks now... sigh. I know having him walk wont magically change anything, but it just saddens me to see.


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## sequeena

Hi ladies, sorry I'm not replying, I'm exhausted at the moment!

Anyone is welcome here :)


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## sequeena

I just realised I don't know where Thomas' glasses are... annoying.


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## Feathers

Any delay problems are worrying though aren't they.

We had a drop in visit from the woman overseeing Olivia's multidisciplinary care today along with a doctor to drop us off reports and her play plan that has been written for her at nursery. It's basically a play IEP with small targets and what she needs to do to achieve them to help her in her areas of weakness.
Signed the paperwork today to refer her to Inclusion properly for nursery support and they were talking about various training and courses they are going to run for her key workers as well as her one to one support.
Apparently portage is a 3 month wait which will put me right on top of baby #2's birth XD typical. At least I'll be at home LOL. 
Anyway its all very supportive and positive and they were talking about baby #2 and how hopefully with a planned c-section we will avoid the problems Olivia has which her consultants strongly suspect were caused by the traumatic birth we had. Have to admit I'm nervous just because...well I love her to bits and I wouldn't change her for the world, but I don't want to go through it a second time really. 

Enough waffle. Hello to the new ladies in here! We're busy preparing for her second birthday! Cannot believe my little baby is going to be 2! She's learnt two new words :D Shoe and juice. (although she doesnt say them properly yet but still...progress!)


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## bumpin2012

Progress is wonderful!

Gabriel continues to confuse me. He can't look at us when we say his name, or look at the appropriate person when we say "where is mama/dada" but he can point to his nose if you ask him to. not 100% consistently, but consistent enough.

Sequeena, did you find T's glasses?


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## Jencocoa

Hugs.

My son was/is delayed and he has been getting early intervention services since just past 1 year old. They have helped a ton! We also made dietary and lifestyle changes which has helped. He was diagnosed with Pervasive Developmental Disorder at 2 and we were told he meets the criteria for mild to moderate autism. He is mostly non-verbal. He has caught up physically and tested as no cognitive delays a year later. We are still working on some motor skills, social skills, and of course language.


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## sequeena

Hey everyone, seems we're all moving forward slowly. Progress is a great thing!

Bumpin yes I found them they were on one of T's bedroom shelves :haha:

So things are good here too. T still says uh oh quite a lot and his understanding is really coming on. He can follow more commands which is great and he's babbling a lot. Hoping for an explosion in speech soon.

He spent today with my aunt and cousin's. They took him to a soft play and he had lots of fun!


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## essie0828

Hi ladies :hi: 

Feathers that's wonderful progress Olivia is making. :happydance: You will be a very busy lady in 3 months. Lol, portage may become a welcome break. I understand what you mean about not going through it a second time :hugs: Im really nervous about even committing to ttc #2 because of Hayleys birth. My mom tried to watch the video of my c-section again and couldn't. At the time I didn't realize it was that bad. I was in shock or something. But I suppose there is a reason I haven't watched it since a week or so after her birth :(

Anna how's your LO doing in the cruisers?? My LO took a little while to get used to hers. It was like the weight of them threw her off. She would drag the toe a lot. After a few days of lots of activity in them she was able to bring them up way higher. Still did the toe walking every step though :nope: I was SO hoping high tops would stop that. :(

Bumpin how's your LO doing? The nose pointing is a good thing. Hayley has only done that for few weeks now. 

Jencocoa :hi: My SIL is a Hoosier! Crimson and cream through and through and she married a true blue Wildcat. Let me tell you that house is divided during basketball season :haha: My DD is starting First Steps next week. Is that the same early intervention program your LO uses?

:hi: sequeena. Loving the pics of Thomas :) He's adorable! I show Hayley his pics and she smiles. I'm working on getting her to say boy but so far she just smiles at him and occasionally tries to lick the phone :rofl: I think the more babbling the better. Hayleys doc actually said that today! He will probably pick up some new words soon. :happydance: 

So things are going warp speed for us. Hayley had her checkup today with her regular pediatricians and I had to inform them of her CP diagnosis. They were really great about it. Let me ask some questions and were very candid. It was nice but made me sad some. Her chances of becoming ******* are high. Depending on the severity of that she may have lots of muscle pain and problems with tight ligaments. I just don't want her to hurt :( We got her referred to the plastic surgeon for a helmet, her doc thinks her plagio case is mild but thinks she may still need a little time in a helmet. 
First Steps evaluation next week. Tubes in on the 18th and then we start all over with the ophthalmologist, and the orthopaedic specialist. Whew. Im tired just from typing it.


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## essie0828

Wow I have no idea why it blocked that word. S*p*astic Cerebral palsy is a dirty word??


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## bumpin2012

Wow, Essie, you have been busy! that all sounds so overwhelming. :hugs: ( and I don't get how [email protected] is a bad word either, bnb is weird somedays)

We are ttcing #2, despite Gabriel's issues. I know they are not the extent that Haley has, but I figure being home with a newborn won't be half as busy as we are now, I work full time, and I also take in my friends 18 month old on my days off ( we are both shift workers on opposite schedules, she takes Gabriel when I'm working.) newborns are tiring, but nothing like 2 tornado toddlers... Lol. the idea of 2 scares me, wondering if the second will have constant issues like Gabriel had (not just developmental). I've always felt 2 was the magic number, shoo we are jumping in and hoping for the best. :)


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## essie0828

Awesome news bumpin! I think almost everyone here is ttc or pregnant :haha: Well ready or not I'm in the tww :wacko:


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## bumpin2012

I don't think anyone can be truly ready for another baby, so here we go. Af due in 6 days... :coffee:


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## essie0828

Lol. Bumpin, that's very true. Good luck dear.


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## sequeena

We're all nuts :)


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## essie0828

sequeena said:


> We're all nuts :)

Absolutely! :rofl:


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## annanouska

I'm not ttc jus yet but only as dh isn't on board yet!!! 

I wrote a huge post the other day and iPad ate it :growlmad: 

Bumpin, Marcus can't point to his nose or actually anything u ask hi to and wouldn't point to mum or dad etc either :shrug: 

There is a 3 month wait for physion :dohh: but they got a cancellation today so he's going to be assessed atleast. He's good at standing now but his left foot is very wonky. Will see what happens later :hugs:


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## sequeena

Hope they see him quickly annanoushka. For what it's worth Thomas has only just learned where his belly button is. He doesn't know any other body parts.

I am getting frustrated with Thomas' lack of sleep again. He didn't sleep until gone midnight then woke crying at 5am. I am just so exhausted :( he doesn't seem to notice that he's not getting enough sleep!!


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## essie0828

Aww poor T and poor mum :hugs: DD's sleep is just now getting better. It's hard when they won't sleep. Do you have any idea what is waking him? Think mabey he's having dreams or nightmares waking him? Or mabey something uncomfortable? Hope you find out why he's waking and can get him to sleep more. 

Anna its good marcus is standing better. :) My kiddo is just starting to point as well. She can point to some things you ask her to but not reliably yet. He may pick it up soon. I got to speak with DDs orthopaedic specialist yesterday and he said that they don't like to do braces or supports for the really young kiddos because they need to build their strength and balance without help. Will he walk if you support him? Will he try to do stairs with help? Going up stairs helped DD a lot with building strength and stamina. She still needs me for balance but she bares all her weight. ;) Hope your DH gets on board with the ttc thing. It's my DH that's ready and me that's saying wait :haha: But honestly DD was a nightmare as a newborn. God love her it was probably from the CP but she never settled on her own. Wouldn't sleep and if she did it was on me or dh for 3 months! I thought sure she would break me but we made it through baby bootcamp ;) I'm just afraid of round 2 :haha:
,
Bumpin your closing in on testing time. ;) eeek exciting!


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## bumpin2012

we always planned on having babies close together, we planned to start in April/ May, but I had s few iud issues, and it had to come out, even though we had thought to wait until September. after a long discussion we felt it would be best to let it happen. if it's meant to be, it will be. 

I'm pretty excited for testing. this is the first month I feel pregnant, but I'm not sure if it's just having my hopes up, or if I actually am. I think I'm actually going to test, rather than the usual wait to see if she shows, so we will see what Sunday brings :)

anna: Gabriel only started identifying his nose, and many babies that have no " issues" didn't start that until about 15 months... it's the only thing Gabriel has done " on schedule" so I wouldn't worry about that just yet :hugs:


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## bumpin2012

sequeena: Gabriel hasn't been sleeping well either. he's written up several times very sweaty and upset. I think he's got another ear infection brewing, so Tylenol and Advil have been a staple at bedtime. doesn't give us a full night, but limits the waking to maybe twice.

could he be having a bit of a growth spurt, or teeth?


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## annanouska

:thumbup: good news on his appointment. He is hyper mobile in his joints explaining his feet. They want to leave him until he walks thn review if he needs insoles in his shoes or any aid. She was pleased with his movement and how expressive he is with his eyes and random noises. She couldn't get over how active and hyper he is and her face dropped when I said this is all day everyday!


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## sequeena

Oh good news annanoushka!!

bumpin good luck with testing! :D

As for T's sleeping, he's always been like this. It's just the way he is :(


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## bumpin2012

oh that's exhausting. :hugs: Gabriel is up at least once, but he usually just plays (very loudly) and doesn't need us to go in, he will generally fall back to sleep by himself. the nights that he's up frequently Im just shattered from, and I remember the days where up all night was the norm.


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## essie0828

Anna thats great! :happydance: :happydance: 

Sequeena you poor thing. :hugs: Hope he gets tuckered out and lets you rest some. 

Bumpin I love your little mans name. It's on our short list for a boys name and Gabriella for a girl :haha: Dh says he wants to name a son Gabriel or Jr. God I hope he picks Gabriel :rofl:


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## bumpin2012

Thanks! Gabriel/Gabriella were the ONLY names we agreed on :) We are SO SCREWED with the next one. We could not be farther apart on name choices...lol...in the end, though, I usually win! :haha:


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## RachA

It's all busy in here lol

We're definitely not pregnant or ttc. We've decided on just the two-well OH has and given that before we had DS he didn't want any I'm not going to push my luck lol. 

Feeling frustrated today - Esther is due another block of speech therapy. Her last lots was April/May time and at the end if the course the therapist said she wanted to see Esther as soon as she could-we still haven't had the dates come through. I've chased them up twice now!!


Re the pointing etc-Esther has only been pointing to her nose etc for less than a year. When she had her first proper assessment she was just over 3 and she couldn't do it. Once she picked ionise she got the rest fairly quickly. 

She goes back to Playschool next Tues and I'm wondering how she's going to cope with bring one if the oldest there but developmentally being one of the youngest!! Last year she was very quiet for the first two terms and then during the last term she made friends with a couple of girls who played with her even though they didn't understand what she was saying. This coming term though they have gone to school so there is only her peers and younger there. Younger children don't know how to play with her as if she doesn't talk to them do they can understand they get bored easily. I know that her worker there won't let her get pushed to one side but it will be an interesting situation for her! 
We've also got to pick a school for her and put our choices in by Jan/Feb. struggling to know what to do as the most obvious choice would be the same school as our son but we could choose a different school. Soooo many decisions to make lol


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## bumpin2012

Rach: would going to a different school from your son benefit her learning? if not, ( depending on the relationship between your 2) wouln't being in the same school with her older brother be beneficial? I mean at the very least, he is someone she will know, and she will have someone to back her up, especially when she meets a mean kid.

Hopefully a clear choice becomes apparent :)


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## RachA

There are pros and cons to both. 
Daniel already knows that we may not send Esther to his schools due to her speech difficulties so its not an issue for him. Esther tends to go with the flow so will accept whatever school we choose for her. 
It wouldn't be such an issue for us if it wasn't for the fact that we found out recently that the senior school we want them to attend will be opening a primary school in Sept 2014 (the year that Esther starts). This school is really hard to get into (its a specific type if church school) but by attending the new primary school Esther would get automatic entry into the senior school. 
If it wasn't for this new school then we would either send Esther to the same school as her brother or else to the school that our education department recommend (if different).


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## essie0828

That is a complicated decision RachA. Will you be able to get your DS into Esters school later?? That is if you put her in the new primary school? Btw, job well done getting two kiddos out of a man that didn't want ANY! :haha: I think I will be done with 2 as well. DH would have a litter if we could afford it :wacko:


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## RachA

No that's not a possibility Essie-the new school will expand each year but basically the Reception class of 2014 will always be the eldest in the school iyswim. Hopefully when Daniel goes to the senior school he will go there though. 

Lol. I know. Daniel was basically pretty much unplanned. Although having said that our main method of contraception was me keeping tabs on ovulation and using condoms when I was at my most fertile. I did tell him it wasn't anything like 100% effective lol. To be fair though we'd been doing a lot if travelling so my cycle was a bit wrecked - it was our chosen method for nearly 3 1/2 years before I fell pregnant so something was working well with it. We had been talking about children and he'd conceded that in the new year (2007) we'd talk about things seriously-so it probably happened a year before OH wanted it to really. It was pretty funny at the time-I thought I was suffering from major jet-lag and then realised I was pregnant. I couldn't tell OH for a week after my positive test as I really didn't know what he was going to say. Then after I told him be basically didn't talk to me for a week-not because he was angry or anything-he was literally in shock!
Then second time around we said that we'd start trying as we wanted a gap of somewhere between 2 & 3 years. I literally got pregnant the first time we dtd!


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## moggymay

Is she likely to have any help in class when she joins reception next year? Is the provision for support going to be better at one school than the other? Apart from that if you like both schools then I guess you trust your gut. :hugs:

My youngest will join his big brother at the same school next year and his pre-school is on-site so he would find it wierd to go elsewhere after I think. Luckily we are pretty much guaranteed a place as we live VERY close by and we have an older sibling there already. Will your DD get priority due to her SEN's?


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## sequeena

That sounds quite stressful Rach, I'm not looking forward to navigating the school thing for Thomas. I don't even know when I should apply or if I should keep him home another year. Who knows, I'll speak to my HV but it depends on if he's potty trained (feeling the pressure now as it's only a year until he's meant to start school).

Thomas is walking on his tiptoes again. He alternates between that and walking properly (though he's flat footed). I know it's common in children who are developmentally behind. Drives me mad though. It's just another 'symptom' and when these appear it takes me a while to accept them because I just want him to wake up and be 'normal'. I am done with appointments, I'm done with worrying, I'm done with stares and questions :(


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## Feathers

You apply for school the December before the year they start. If Inclusion is already involved in your LO then they will be heavily involved in transition into the reception classes (this is obviously for UK). Does your LO attend nursery? If so and he has an IEP then that will go with him. Obviously children in mainstream primary schools do not get a great deal of extra support without an IEP, and in order to get proper one to one support you need a Statement of SEN which states this and they will be allocated however many hours one to one seems appropriate when the statement is given. Unfortunately with government cuts it is so hard to get one of these due to lack of funding! It's work looking into Statements etc before school if possible...if Inclusion Team are involved now then do speak to them about it! Hope that helps ;)

Edit: I should add I am a primary teacher currently in early years so I see a lot of SEN children coming through ;)


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## sequeena

Thanks Feathers. He's not in nursery but we are waiting for portage if that's any help? His developmental report got sent to the top man in our county who deals with disabled children in schools (not met him yet so not 100% sure what he does, think he decides what support you get).


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## essie0828

:hugs: sequeena, I know exactly how you feel hun. It sucks. If anyone sees DD try to walk they stare :( I suppose as she gets older it will get worse. I'm a little afraid of how I will handle it to tell you the truth.


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## bumpin2012

:hugs: sequeena and essie. it's so unfair to watch your child struggle. I don't know anything about your system, hell, I'm unfamiliar with my own here in Canada. Hopefully you guys have someone to help guide you through those decisions. 

I don't think holding Thomas back a year will hurt him. it might give him so time to catch up a bit, and make school a bit less overwhelming for you both. I think I would be inclined to wait a year, but I'm not anywhere close to the same situation.


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## essie0828

On a lighter note :) DD peed in her frog potty this morning :happydance: :happydance: We're no where near trained but :happydance:


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## bumpin2012

YAY!!! so very exciting!


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## essie0828

Debbie Downer Alert! :haha: So I have a bit of an off topic rant....... my brother is getting a divorce :( I absolutely love my SIL. She's great and it really sucks:( My brother is a prick. :nope: And on top of all that DDs walking is really "off" the last couple days. I don't know what to think of it really. She's dragging her toes like her feet are heavy and she's even more unsteady than usual. I'm a little worried. Is this just the CP? Or is something else causing her to get worse? She's eating sleeping and playing fairly normal and doesn't have a fever. I'm stumped ladies.


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## bumpin2012

Essie: will it be possible to maintain a relationship with her? we still talk to dhs  brothers ex wife, on a regular basis.


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## essie0828

Yeah bumpin, I think so. She lives about 3 hrs away but keeps in touch. They have been married over 10 yrs :(. I hope we can continue to keep up with each other. I'm still a little angry at my brother but I suppose he has his reasons. Blah! I hate change :haha:


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## bumpin2012

well I *think* we have some major changes coming our way - Got a faint :bfp: this morning!


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## nearlythere38

bumpin2012 said:


> well I *think* we have some major changes coming our way - Got a faint :bfp: this morning!

Congratulations:hugs:


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## essie0828

Congrats bumpin!!!!! :happydance:


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## essie0828

I will be testing next Sunday myself.


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## essie0828

Sequeena are you in the tww yet?


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## bumpin2012

good luck Essie! I'm testing with a Frer in the morning. I had a dollar store one that was a very faint line, so hopefully it's still 2 lines in the morning :)


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## moggymay

Congrats and FX'd :hugs:


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## bumpin2012

yup - Definitely a bfp :happydance:
 



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## moggymay

:wohoo: :dust:


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## sequeena

Oh congratulations bumpin, our first group :bfp: :happydance: we should name ourselves - psycho mamas wanting more perhaps :rofl:

I am still waiting to ovulate. It's odd since my period stopped I've been having a lot of belly aches... maybe I just need to clear out my bowels :blush:

Sorry I've not been around much. Sean has started 2 weeks of night shifts so it's just me and T. Last night was our first night. Thomas had his first night terror at 8:30pm and wouldn't go back to sleep until 1am so I'm pretty tired. Sean woke a few hours ago (it's 4pm) so him and Thomas are watching Thomas the tank enginge upstairs whilst I've been cleaning. Off for a shower soon I feel all icky.

Not much going on here developmental wise, think I'll rename the thread 'developmental support and chat' so people don't get confused when they see us talking about :bfp:s and whatever happens in our lives :haha:


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## sequeena

Also, would you ladies like me to keep a list on the front page? Something about us, our kids, how old they are, what they're behind in, if we're TTC, PG, WTT etc?

Like this;

sequeena - Thomas is 2, has Global Developmental Delay, glue ear and a hypoplastic thumb. Waiting for surgery. TTC#2


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## RachA

Sorry I've not been around much-been trying to enjoy the last few days before school starts again so we've been at the beach nearly every wakjng hour!!

Sequeena-yes that sounds like a good idea re the front page. 


To those who were asking about Esther re schools etc-we are working on getting her statemented-once she goes back to Playschool this week her SenCo is going to start pushing for it as the lady who works in education that is linked to us and comes to TAC (Talk Around the Child) meetings suggested that its better to have it in place before we need to choose a school for her. Also the statement will help us to be pushed to the top of the list so that we fall into the top category. 
Once she has her statement, in theory, it won't matter what school she attends as they will have to provide her with the stated help. 



Congratulations on the positive pregnancy tests :) safe to say that I won't be joining in with you guys on that one lol.


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## bumpin2012

sequeena: you can add us :) Gabriel is 1, with undiagnosed delay and preggo with #2


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## essie0828

Hayley 18 months Global Developmental Delay and Diplegic Cerebral Palsy ;). Ntnp#2


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## sun

Wow this thread has really gotten speedy! :haha: 
B starts his first day of real school tomorrow. Full day (9:15-3:45) and he's only 3y9mo! He is right before the cutoff so will be the youngest. The cutoff is December here, so the youngest kids aren't 4 when they start. So that just adds to my stress about his readiness. His speech is already not as good as most 3yos - so when he's around 4.5yos the difference is even more obvious! So scared. Hopefully the school has lots of support. Wish us luck!


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## RachA

Hope B gets on ok at school Sun. He seems far too young to start-my son was 4years 1month when he started and I really feel he was too young-he didn't gave any delays. 
Is there any support in place for B? 



Sequeena-add Esther please. She's 3y (nearly 4) with a severe (can't spell that!) speech delay


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## moggymay

Good luck to all the little ones starting pre-school/school this week :)

Meeting with J's keyperson this morning....see how she thinks yesterday went after the holidays and what the plan is for him for this term....

Front page info Jack, just turned 3 and speech delayed. No more babies for us either Rach


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## Peanut78

Hi All, can I join you :flower:

My 4 year old son has delayed myelination which manifests as dyspraxia (motor planning difficulty) - this has caused GDD. He is in OT and ST and is catching up in all areas except speech where he still has a severe speech delay. 

He just started at a new school (we recently re-located). I've held him back a year as his birthday is mid-July and I don't think he will ever benefit from being one of the youngest kids in the class (he's only 5 weeks off being in the younger year anyway!). 

We are ttc, but I've had loads of issues since giving birth to my second son 2 years ago including hormonal imbalances, excessive scarring on the inside of my uterus (c-section) etc. I'm on clomid this cycle, if nothing comes of this month I plan to put ttc on the shelf for a bit - possibly permanently :shrug:


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## sequeena

Oh my, we are moving along aren't we?

Hey Peanut, of course you can join. I should have thought of you earlier actually :dohh: Do you want me to put you on the front page?

Good luck for the kiddos starting school this week :hugs: my 4 year old cousin (who coincidentally also has speech delay!) started reception today. He's such a big boy now! Hard to believe that when Thomas was born he'd just turned 2 :wacko:

Rach good luck with the statement, hope you get it soon!!

Bad night again. Thomas cannot get past sleeping 3 hours in his bed then he's up. He woke at 11pm, back to sleep around 1:30am. I am so knackered he stayed in my bed :dohh: but it meant I slept until 8am.

I will go update the page :thumbup:


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## moggymay

Good news here :) 

They (pre-school) are thinking we have made progress - confirms what we hoped. SLT assessment in October to see what happens next. They are confident we don't need to go down the statementing route which is positive, SLT will confirm this after assessment but they don't do anything in our area until January next year unless it is parent requested statement...

Scary thought, we can make our school application next week! :shock: My baby is growing up. He starts swimming lessons next week...


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## essie0828

Hi Ladies :hi: 

First Steps will be here tomorrow at 930! I'm nervous and excited. And running around like mad trying to clean with a toddler in tow. That part's not working out so well :nope: I really hope this program helps DD some. 

I saw my cousin and her little cute man today. :). He is 3 months younger than Hayley and is doing so much more than her. It was a bitter sweet day. I loved seeing my little cousin doing so well but my heart sank at the difference between him and DD. 

Sequeena ty for doing up a front page. Makes keeping up with you lovely ladies much easier! :clap: 
Poor T and mum :hugs: night terrors and sleep issues suck. Hope you guys have some lovely days and some sleep ;)

I hope everyone's back to school, or off to school adventures go smoothly. :hugs: to all the big brave kiddos


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## essie0828

Girls I need some honest opinions on a Facebook/mil issue. So I have a FB page in Hayleys name to share photos and stuff with the family that lives away from us. I shared some photos of DDs 9 month checkup( pre CP diagnosis) with her length, weight and a caption that said "A happy, healthy lil girl." Well my MIL re posted this same pic a day or 2 ago EXCLUDING the caption "A happy healthy lil girl." Am I right in saying that she would have to physically change the caption before reposting it in order to exclude that? And why do that? Especially knowing she is recently diagnosed? I'm livid! Hayley is a happy, healthy lil girl that just so happens to have CP! Am I being over sensitive? This is all still pretty fresh and raw but damn. That just seems like a low blow. :nope:


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## essie0828

And of course I did something stupid in replying to the post in the comments section that it was sad that she would re post that pic without it saying "A happy healthy lil girl" and then I re posted it the way its supposed to look. Some days I think I should just delete our FB :(


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## sequeena

I think when you share something on FB it doesn't always copy the writing underneath so it could have been FBs fault, not hers. You should speak to her hun but I understand the automatic anger and becoming defensive.

And yes she is a happy healthy girl! :hugs:

Hope the first steps appointment goes well :hugs:

moggy that's great news!! Our kids are growing way too fast I really don't want him to go to nursery next year (though by then I may be bald and ready to send him :haha:)

Thomas was sleep before 7pm then woke an hour later because my OH decided to use the upstairs loo :growlmad: we have a downstairs bathroom too, use that one!! Anyway, he screamed like a banshee. He'd been a little bugger all day, crying whining and head butting everything :( OH left for work oh god it was awful I've not heard screams like it for a long time.

Got him to sleep at midnight and he woke at 8am. I was up 2-3 times for a wee too :dohh:

We're going to softplay this afternoon though I'm really looking forward to it :)

Tomorrow morning welfare rights is coming to the house to help us fill in the DLA forms. I need to find T's developmental report, SALT report and ENT report. HV said she'd write a letter of support too so I need to get on that.


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## AP

I always forget to drop in here!

Yeah I'm in for the front page - Alex is 4, ASD, developmental delay and non verbal
No more for me. Not for at least 5 years if anything

Tori is 2 and has speech and gross motor skills delay


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## sequeena

Hi AP :wave: Will add you :thumbup:


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## Peanut78

Moggy - that's all very exciting! What does the statementing actually mean - I've heard a few people from the UK refer to it...? My hubby is British, but we don't live in the UK...

Essie, I don't know anything about how FB works and whether your MiL would have removed the text intentionally - but I can totally see why this upset you :hugs::hugs::hugs: If she did remove it then you have every right to be upset! I am very sensitive in terms of comments that are made about my T and can be very defensive (perhaps overly so :dohh:)... :hugs:


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## RachA

Peanut-to answer your question re the statement. Basically it's a statement of educational needs. If you get a statement it means that the school have to provide x number of hours per week for the child to have one to one support. So a child is in school for roughly 30hrs per week and they may have a statement for 20hrs. For that 20hrs someone will either work totally 1-1 or else it could be a case of the person watching and intervening if needed etc. I'm torn between wanting Esther statemented or not. I think part of me wants to believe that when she starts school next year that she won't need any extra support.


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## essie0828

You girls rock! Thanks sequeena for letting me know FB may have caused it. I removed my comment and then uninstalled my FB app:haha: I'm a little to defensive and really just need a FB break. I'll miss seeing little Ts cute face but I'll be back around im sure. ;) 

Peanut glad to know I'm not the only one that gets a little bent out of shape ;) And God knows I don't need another reason to be angry. 

Well my Hayley pulled a chair over onto her face this morning. It hit her pretty square on the cheek and she may have a black eye :( I feel horrible. And the saddest part is she was trying to dance but got a little tooo jiggy with it and pulled the chair over on top of her as she fell. I hope it don't scare her off dancing forever :cry: 

The First Steps evaluation went over ok. Hayley warmed up to the ladies pretty fast and was nice but I'm afraid of how advanced the eval was. Hayley couldn't do half the stuff :( not really looking forward to getting the results but ready or not Monday is the day. I will meet with her therapist then. They will focus mainly on PT according to the service coordinator. But that's all subject to change based on the evaluation. Although I doubt it.

And my baby crawled up a step all on her own for the first time today :happydance: And in general she has done really good today. She's into everything and I can barely keep up! I Love it! :happydance:

Girls how about a story!?? Something your kiddos have done today. Annoying, cute, scary, whatever. Just a snippet of your lives. Lol. I just realized this no FB thing may be affecting me in some strange way. I rarely ASK people about their lives....I just check FB :rofl:


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## essie0828

RachA said:


> Peanut-to answer your question re the statement. Basically it's a statement of educational needs. If you get a statement it means that the school have to provide x number of hours per week for the child to have one to one support. So a child is in school for roughly 30hrs per week and they may have a statement for 20hrs. For that 20hrs someone will either work totally 1-1 or else it could be a case of the person watching and intervening if needed etc. I'm torn between wanting Esther statemented or not. I think part of me wants to believe that when she starts school next year that she won't need any extra support.

Thank you! I was so confused to. How much longer till Esther starts school? A full year?? She may very well be able to start on her own. If she does, but then needs help will they still give her support??


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## sequeena

Don't worry essie, I am the same :) I'm a proper mama bear when it comes to Thomas' disability.

Poor Hayley! She's ok I'm sure, T has also pulled a chair on himself in the past. I think it's a toddler rite of passage :thumbup:

Glad the evaluation went ok. Sounds like it was a similar test to what T had. You know it's probably not going to be great so don't feel down just accept what's wrong and make a plan to change it :thumbup:

Hmm... well today I took Thomas to a local soft play for a meet up with other mums and children off a local facebook group. The women were nice, 1 of them I already know as her LO is 1 day younger than Thomas and we were at the same PND group together. The soft play was awful. £3.50 for less than an hour because they were closing at 3pm for a private party. £1.40 for a fruit shoot and a bowl of greasy chips (fries) :sick: the toys were dirty and some were broken. We won't be going back. T didn't enjoy it either he stuck by my side for most of it, didn't interact and only pushed round a pram or a ride on toy.


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## sun

Hi all! B had his first day of school yesterday and it went pretty well. We got there to a sea of sobbing children though so it was a bit stressful. B wasn't really sure what was going on. But he saw a lightning mcqueen car in the toy area so went right in and got the car and was instantly at home :haha: I just hope they see/understand and let him carry a car around. I think they did yesterday because it was the first day, but I'm not sure if they realize that he gets very agitated without one. When I tried to explain some things, they said "Oh yes, they're all like that". They don't really take into consideration assessments from the treatment centre he was at - they like to make their own based on how he does. So he's kind of starting from scratch. Also he's very passive and distant in this kind of situation, so he's easy to overlook or ignore since he doesn't make a fuss. 
Anyway - I thought I would give a little update. I can't believe how stressed I am about him in school. I feel like the day drags on until 3:45 when I can get him :nope:


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## essie0828

Toddler rite of passage :rofl: I suppose your right. And she's fine. I checked her cheek bones and she didn't break anything. She calmed quickly and played on. It still makes me feel a little guilty though. 

Eeeww. Sorry the soft play sucked. That really does sound unappealing :haha: But the group play sounds like a great idea! Hmmm, maybe meet somewhere else?? I really need to find something like that for DD. And a CP support group close by would be great!


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## RachA

Essie-glad the evaluation went ok. I think they are always a little scary-Esther can never do half if what they want either! 
I'm sure her face will be ok-both of mine have done awful things and they never look as bad as I think they will. 
Yeah-Esther starts school Sept 14. The trouble is that if she starts off without a statement and then they decide she needs help it can sometimes be really hard to get one. I've a friend whose daughter is dyspraix and it took most of primary school to get the statement! 


Sequeena-I've been to soft plays like that. Tbh I tend to stay away from them as I find them too stressful. I'm not a paranoid parent at all but I can never relax as I want to know where Esther is lol

Sun-I'm sure the school will understand about the car thing. 


Well a story about Esther-from yesterday not today. We were at the beach and she jumped off something 3 times in a row! She was holding my hands but she jumped without me pulling her and she did it with her two feet together rather than one at a time. To most people us sounds stupid that I'm really excited about that but for us it's a huge thing :)


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## essie0828

Sun, I dread the day DD starts school. She's very much the same in that she is easy to over look. She's very passive and quite but can throw one hell of a tantrum if you don't do things "her" way so to speak. It worries me that someone will be mean to her because of that. Hopefully though your school really is that experienced with dealing with little ones like yours. Mabey they can teach him to calm himself without the car? But honestly I say let the little dear have a car and maybe his teachers will to. I'm about 75% sure I will have to send Hayley off with her blanket :haha:


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## essie0828

RachA, I would be tempted to have her statemented if I thought she may need it later in the year as the curriculum progressed. It would be better to have it in place if she needs it. Mabey if she does very well they will let her go solo some?? 

Aww hun if Hayley jumped in anyway Id probably crap my pants with excitement. Hunny you celebrate that! Go Esther! :happydance: 

Uh oh.... and the bear stirs in its den.... nap time is over :haha: Ttyl.


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## RachA

Yeah we will push for the statement - it feels kind of bittersweet tbh. I'd rather it be in place but it makes me feel like she's then going to be 'labeled'. I know that there isn't really a stigma anymore but sometimes I think that getting the statement will make her go from being 'Esther, the cheeky monkey, to 'you know, Esther with that development problem'. I know that the statement doesn't change who she is to us but it will to other people. Very few people know that she has a developmental problem-only those people that need to know. 
And gosh, there's me feeling sorry for myself now when I don't need to lol.


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## moggymay

Rach we were advised to go for it because you never can tell what might happen, as they say plan for the worst and hope for the best...

Impressed wit the two footed jumping :) Quite a skill to land a two footer onto sand as well, even more to repeat it as it is a funny landing no hard no soft. I would be proud too :)

Funny story....Pickle did a whole day in pre-school today came home happy if a little stripy with blue paint :dohh: Saw another mum at school pick up who had the same colour pain on her....would seem my little man was decorating her :haha: They both thought it was very funny though and she said he was much chattier today with her than he was last term :cloud9: So proud of him, it islike a little switch has been flicked. Dreading the SLT seeing him as worry she wont see it.

Loving the improvements in all the little folk...well done mummies!


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## essie0828

Moggy it's good he's liking school and making friends. And wtg kiddo for the improvement since last year :happydance:


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## bumpin2012

yep. right of passage. Gabriel has split his chin so badly, he probably should have gone in for a stitch or 2... 

Gabriel has decided hee needs to kiss everyone... regardless of whether or not they WANT to be kissed. he was at the sitters today, and kept trying to kiss her 19 month old ( who is a very non cuddly girl) she shoved him away repeatedly, but he wouldn't give up... poor monkey. shot down by his first love at 16 months...


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## essie0828

Aww. That's so cute. Poor guy. Hope he's not too heartbroken ;) 

DD planted a big random smooch on me today. :haha: cutest thing ever! Baby kisses are the best. Even if they are a little wet.


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## RachA

Ah poor Gabriel-at least he's young enough not to remember the rejection of his first love lol. 
Toddler kisses are the best. Just dropped Esther off at Playschool and she planted a lovely big kiss on my lips-she's finally got the hang of proper kisses and not just opening her mouth and slobbering lol.


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## essie0828

Lol. Awww how sweet of her. Hope she has a great day in playschool :)


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## sequeena

I need to vent :cry: we had a letter from Welfare Rights last week saying someone was coming to see us this morning. I've had a rough night again with T trying to get him to sleep just so I could get some sleep myself (waking every 10 minutes, screaming etc.). Sean got home from his night shift and stayed up too. He's just rung them to be told we won't be seen today as the woman is off work and they didn't even know she was coming to see us.

Thanks a lot!! We're all tired and irritable :growlmad: They couldn't even tell us when we would be seen so we're taking the forms to citizens advice. FFS this has really upset me (but only because I'm so tired you know?)


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## essie0828

:hugs: sorry hun. Sleep deprivation is horrible, but them just not showing up would annoy anyone. Mabey ask your DH to let you nap some today while he's home? I know it's hard to go to work on little sleep but it's hard to be a mum on little sleep to :hugs: Especially consecutive nights of no sleep. I hate it. Things always seem negative when you are sleep deprived.


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## sequeena

essie0828 said:


> :hugs: sorry hun. Sleep deprivation is horrible, but them just not showing up would annoy anyone. Mabey ask your DH to let you nap some today while he's home? I know it's hard to go to work on little sleep but it's hard to be a mum on little sleep to :hugs: Especially consecutive nights of no sleep. I hate it. Things always seem negative when you are sleep deprived.

I can't do that to him he works 12 hour night shifts :( so I just have to suck it up. I'm feeling run down though and have an ulcer in my mouth :(


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## essie0828

Aww goodness:nope: Hun I know exactly how you feel. My DH is a postman during the day and delivers newspapers at night. It works out to about 12-14 hrs work a day. He's usually so beat that he can't help with sleep either. Hayley was up at 430 am today with teething pain (canine teeth have been such a nuisance) after going to bed at midnight. But it's not so bad so far. If she does this a few nights in a row I'll be ready to pull my hair out. :haha: Wish we lived closer, Id offer to watch the fast little monkey. This momma needs a good jog :haha: Hayley is fairly immobile so I don't get to run after her too much.


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## bumpin2012

Oh sequeena, I would be furious, and not just because I was tired! That's so unprofessional to have an appointment set up, and they aren't even aware of it. Will he nap during the day? Maybe you can get a bit of sleep while he sleeps? :hugs:

Rach: Yay for the jumping! oh, and thanks for explaining the "statement" I was starting to get confused! Could she get her assessment for it and not use it if she doesn't need it when she goes to school? Might not be a bad thing to have in place if she does need it?

Sun: I hope the school is able to understand your little guy.


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## RachA

That's rubbish-frustrating even when you've gad a good nights sleep. 

I would see if your OH can have T - even an hour would help you.


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## RachA

Bumpin: thanks-I was pretty impressed with her :)
That's no problem-thankfully all the people we have working with us are so good plus I have the friend with a daughter who's SEN so I've had a lot of people helping me out. Unless Esther improves dramatically in the next 2 months (her next assessment is the beginning of Nov) then we will push ahead for the statement. It'd be much better to have it in place and then her not need it. 
Are you starting to feel the effects of being pregnant yet?


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## bumpin2012

Not any of the bad ones :haha: Im tired, but Gabriel is probably mostly to blame for that. He's not a great sleeper most nights. Im STARVING these days, which is so unlike my last pregnancy. I feel like im eating constantly and im still hungry. I don't thinks its quite real yet, that Im going to have TWO kids next year!


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## sequeena

:rofl: Thomas would really give you a run for your money. Since he got his glasses he's got so fast!

Thanks girls, I took T to the park (had a bit of fun then whinged) and to our local coffee shop. £4.65 for a massive tuna and mayo sandwich, salad and crisps (the bread was a wedge! So nice though), a banana and a glass bottle of coke. T had some squash and they didn't charge me for that :) Thank God it was in a plastic cup and he doesn't know what to do with that so he tried to suck from it like his beaker and it went all over him and the mock leather chair he was sat in :dohh: he ate some sandwich, refused the banana then whinged at me. Luckily they had a box of toys so he was distracted by those for a while.

The coffee shop is part of a new community church and I found out they have a free playgroup from 9-12 on a Thursday. I missed it today but we'll go next week. Hardly anywhere does free playgroups especially so close to home (I live on a mountain). I'll deal with the sleep deprivation for that!

T got home and ate 2 small bowls of grapes :dohh: I've stripped him because he was soaked from the squash and he's parked on my lap watching TV :blush:

Rach good luck with the statement xx bumpin yes you'll have 2 kids. EEK!!


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## essie0828

Lol. I can tell he's fast from that video of him in the park :haha: I love that! I'm sure I would have to wear running shoes. And im sure I would be knackered (as y'all say) after just a few hours :haha: It sounds like you have had a lovely day out with him. Is he still getting really upset when he sees your DH leave? I'm lucky that DD is asleep when her papa leaves or I'm afraid I would have to peel her off him. 

DD took another wee in her potty this morning :happydance: Our bathroom was freezing and I had to pee really bad myself. So I go packing DD in one arm, hurrying so she don't pee on me, and plugging up the space heater with the other. After a min of fumbling around I finally bent down to place DD on her potty and I'll be damned if I didn't pee my pants :rofl: I just love this post pregnancy bladder :dohh:


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## essie0828

Bumpin :haha: that realization is a bit scary huh? TWO!


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## bumpin2012

I'm suddenly terrified... Lol... I can do this, right?


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## essie0828

You got this. No worries;)


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## AP

You CAN do this :haha:
I was proper terrified because Alex had no idenpendance of any sort, could even feed herself or anything and was still vomiting at a huge rate :dohh:
Everything fits together, it just.....works!


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## essie0828

AP that's good to hear :hugs: TY. I worry about having 2 since DD isn't independent either.


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## bumpin2012

thanks ladies. Gabriel is pretty easy going, but like sequeena's little guy, he's everywhere. I'm hoping ( perhaps stupidly) to breastfeed, but it seems so impossible to do while chasing a 2 year old. my first go at breastfeeding was a nightmare, with a lot of guilt and resentment for 6 very long weeks. hubby doesn't want me to try again because of it. but I'm getting ahead of myself... Lol... I got 8 months to worry about this little person arrival


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## sun

bumpin2012 said:


> I'm suddenly terrified... Lol... I can do this, right?

You'll do it! :thumbup: Things will work out and you'll get into a routine. Also for us our fearless girl has really gotten B to try new things and break from what he's comfortable with. So there's been alot of positives!


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## sun

bumpin2012 said:


> thanks ladies. Gabriel is pretty easy going, but like sequeena's little guy, he's everywhere. I'm hoping ( perhaps stupidly) to breastfeed, but it seems so impossible to do while chasing a 2 year old. my first go at breastfeeding was a nightmare, with a lot of guilt and resentment for 6 very long weeks. hubby doesn't want me to try again because of it. but I'm getting ahead of myself... Lol... I got 8 months to worry about this little person arrival

Just because last time didn't work out doesn't mean this time will be as difficult. If you really want to BF, then I would get a good support system behind you in case of issues. Especially your hubs! He's the most important support system there is! I BF my daughter with my son running around and it was easier than bottles I suspect - just pull out my boob whenever she's hungry lol :haha: I'm still BF my daughter now actually and 9w pregnant with #3 - YIKES! Freaking out a little


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## bumpin2012

congrats Sun!

hubby was super supportive the first time. but the experience had left him a bit traumatized, I think. I'm sure he will support me no matter what, but he's very afraid of going through that again ( as am I) I'm hoping it will work easily, or at least have something to work on. Gabriel refused to latch for 5 days, then did nothing but use me as as pacifier, we tried a shield, the sns, herbs, domperidone, pumping, marathon nursing... everything. I was devastated when he went back to refusing and nothing I did changed his mind.


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## sequeena

Aw congrats sun!

I have a feeling my OH won't want me to BF again. I had to stop at 2 weeks with T because he got very ill with a blood infection but he wasn't a great feeder anyway. Hard to latch, wouldn't go on for long enough, always crying. I was a wreck and OH kept telling me to put him on formula. In the end I didn't have a choice. Formula or die.


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## RachA

Congrats Sun :)


Having a new addition is always daunting regardless of what the first child is like. I got pregnant and Daniel turned into a monster!! I wondered what I'd done lol. 
I also didn't have an easy time bf first time round-I struggled with it for 8 months but I didn't enjoy it! Second time around Esther was a natural and a joy to feed. Daniel was 2 and 2mths when she was born and all over the place but feeding Esther just happened. I could do it walking around following after Daniel etc. 
it all does all into place. I know a lot of people find the move from 1 to 2 hard but I found it really easy.


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## moggymay

I second the feeding on the go after a toddler....I BF my first until he was 23 months and then when I had Pickle I realised how easy it could be! He was a natural and just latched on and had his fill, he fed quicker than his big brother and was willing to feed from all angles :shock: I hear folk say they think BF will be difficult with a toddler as well and think that surely it isnt any harder than making bottles and having to worry about sterilising/warming etc plus it is on tap whenever wherever. I am a freak though as have never bottle fed, have fed other peoples babies a bottle but wouldnt know how to make it without following the side of the packet!

The big thing about having a second is that you do start to believe you know what you are doing :)


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## bumpin2012

thanks ladies! Hopefully it's an easy transition. I babysit my friends 19 month old ( she babysits mine) on my days off, and I can manage 2 of 12m, so a newborn can't be that much more right?

sequeena, that sounds stressful! but you are right. the choice of death or formula makes it an easy decision.


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## essie0828

My kiddo was a nightmare to feed as well. At the time I thought it was all my fault but I think she was just too weak. Hoping to get a second chance at it sometime. ;)


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## essie0828

Bottles are a hassle I think. We used the doctor browns bottles and omg were they a pain to clean! 6 pieces to each bottle that had to be scrubbed and DD took up to 12 bottles a day! I spent my life holding a baby and scrubbing bottles. Horrible.


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## AP

Got home tonight and the girls were on fire :rofl: Alex signed mum, bag and light and Tori shouted "feet"

There's a story to that all that I won't bore you with lol!


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## RachA

Ah AP - that's so cool :) 

I had to do bottles for DS - managed to feed him myself for 3 months then he had me plus 1 bottle a day for a couple of months. And then the bottles gradually increased until at 8 months he was purely on bottles. He seemed to have so many. At 18mths he was still having 4 full bottles a day. I found it such a hassle. Although he was a nightmare to feed myself I found that easier than messing about with bottles. It was such a breeze when I then fed Esther so easily. She fed until 18 months and was in a routine so I just felt great.


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## AP

I remember Alex was about to come home so we were rooming in at 3 months at the hospital and they gave us a steriliser. 

And I'm like....what am I meant to do here :rofl: she had always been tube fed, or presterile bottle with expressed BM or formula.

With Tori we used MAM self sterilsing - oh what a god send, they were so quick we only needed about 2/3 bottles and the teats were easy (Tori was breastfed for 8 months, but had the odd bottle). My steriliser just collected dust!


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## RachA

Esther's gone to Playschool this morning and it feels really odd. She's been doing Tues, Wed and Thurs anyway but Fri is an extra day so I'm used to having her around.


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## essie0828

AP when did you start the Makaton with Alex? I'm wondering if signing may be something for Hayley to help her communicate better. She wants to communicate so bad sometimes and she ends up using gestures most of the time. And so far it seems her arms and hands are the least affected.


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## bumpin2012

well...back from his hearing test. his ears are, fine. They didn't even need to do the ABR test, because he passed the standard test.

so we're back at square 1...


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## RachA

Essie-we started doing Makaton with Esther at around 2-2 1/2. She really didn't start picking any up until she was around 3. To start off with she didn't have enough understanding to pick it up. Because she is picking words up I'm not pushing it as much as I would be otherwise but I am still tying to teach her the odd word. 


Bumpin: I know that it must be somewhere in the thread but I'm being lazy ATM! What signs are there pointing towards your lo having a delay?


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## bumpin2012

he's always been behind his peers in everything, by at least 3 months. he's now 16 months, and only beginning to babble "da" sounds. doesn't respond to or know his name, rarely seems to hear anything. he fall a hearing assessment in June, leading up to today's appointment for further assessment.


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## essie0828

:hugs: bumpin. That has to be frustrating hun. I'm glad he can hear well but I know you were hoping that would explain his speech delay. Any early intervention programs where you can have him tested for developmental delay? I have no clue how things work up there hun. Finding the correct services is like navigating a maze here in the States. I hope you guys get some answers soon. And above that I hope little Gabe is just being stubborn and taking his sweet time ;)


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## essie0828

RachA thanks! I googled some of the signs and I think it may be a little hard for her just yet. She doesn't have the understanding either or the fine motor skills. 

I think we may be getting put on the waiting list for OT, PT, and speech therapy at a nearby rehabilitation hospital :happydance: That is if our insurance agrees that it's "medically necessary". Omg I hope this works! First Steps is only going to provide a PT :( and she really needs speech and OT as well.


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## sequeena

Of course it will be medically necessary, don't panic :hugs:

bumpin great news there's nothing wrong with his ears! It may be he's just taking his own time :hugs:

Nothing going on here, been buying more Christmas gifts. Almost done now!


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## bumpin2012

thanks ladies

Essie, he was seen by early intervention @ 10 months. he was identified then as being delayed, but minor. he's on a Watchlist and the assessor checks in every month or so to talk about his progress. the hearing test was the first thing to look at because communication was the area with the most significant delay. he's really only at the level of a 7 or 8 month old, although in all other areas he's about 12 months.


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## bumpin2012

Hopefully your insurance works out. it sounds so frustrating to have to rely on them for things like this.


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## essie0828

You are Christmas shopping already!? Girl you're making me bad, I haven't even thought of Christmas :haha:

I really hope you are right. This hospital has a huge warm pool for therapy and really amazing facilities. Camps for disabled kids and support groups for parents. That would be great for us.

Had a lawyer contact me again today about the hospital where I had DD. She really thinks we have a case for medical malpractice. I don't even know how to come to a decision on this. The medical records are a big fat lie compared to the birth video and they are obviously trying to hide something. I just hate getting involved in legal stuff but it could mean a better life for DD...... honest opinions, what would you ladies do??


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## essie0828

Bumpin if they are monitoring him monthly that's a good thing. It's great that you guys are watching him so close. If they don't feel the need for him to have interventions yet that has to be a good thing ;)


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## sequeena

Go for it. I'm suing our council because I fell with T at 5 months (over a loose paving stone which they fixed then denied it was even broken). We think this is a possible cause of his delay as he took a bad knock to the head. Well really he slammed the back of his head on concrete.

I've been buying for months :haha: Just need to do other people now.


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## essie0828

Omg they fixed it and lied!! That's horrible! I was shocked at the lies in our medical records :nope: Thank God we took video or we wouldn't have any proof at all and they won't volunteer the truth. Do you have to provide a MRI to sue?


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## essie0828

Have you been able to get your appointment for the pediatric neurologist yet?


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## essie0828

Bumpin after his hearing test they may re do his evaluation. Here the hearing test is the first thing early intervention programs want in their files as well.


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## sequeena

No not yet! It's a real pain!

I didn't have to provide anything, just told them what happened then gave them access to mine and T's medical records and it went from there x


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## Peanut78

Yikes, this thread moves fast! :dohh:

Essie, if there is a possibility to impact the outcome for your DD i.e. compensation which would enable you to provide further support I would definitely consider this - early intervention can make such a difference for longer term prospects :hugs: 

I would be surprised if your insurance doesn't agree to OT, ST, PT etc. - surely CP itself would be covered. 

My Theo had an MRI to rule out anything neurological because of his delays (standard procedure in private healthcare in South Africa where we were at the time) - low and behold we found out he had delayed myelination - this made a HUGE difference for our ability to claim from our insurance company. We now have 4 sessions a week (fully covered) and are eligible for any in-school support he may need from OH's employer.


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## Peanut78

Also Essie, wanted to add we started signing around 20 months and introduced it through some fun DVD's (Baby Signing Time - not makaton per se, but very similar). T really took to this, and it kind of laid the foundation - from there it was easier to introduce makaton/ signing in general :thumbup:


----------



## essie0828

Thanks peanut! The nurse that was working on the referrals seemed positive about it but said it may take her a few days. How did your lo do with the MRI?

Sequeena that has got to be frustrating. Any way to get them to hurry up, lol. It took 3.5 months for us to see the neurologist and that seemed like forever.


----------



## bumpin2012

Essie, I would pursue legal action without question. compensation would mean that she is taken care of four the rest of her life. you wouldn't need to worry about whether your insurance would cover something she would benefit from. it will likely be a long battle, hospitals have great lawyers, but you have video, and they just might choose to settle.


----------



## bumpin2012

oh, and I believe a referral to a developmental pediatrician is now on the table.


----------



## essie0828

Yay bumpin! Glad you got your referral :happydance:


----------



## RachA

Bumpin: thanks for that. As disheartening as the result of the hearing test is, in respect of hoping that a hearing problem could be the cause of the delay, at least it's something that can be ruled out. We were kind of hoping that Esther was her hearing as at least that was easy to rectify! But it wasn't. Hopefully Gabriel is just taking his time. I know that my son didn't look like he was doing much and then all if a sudden somewhere between 18 & 24 months he improved so quickly. 

Essie: re the legal action. It would totally depend on how likely if us that you'd get something out if it. My mum had a very serious car accident 13/14 years ago. It was clearly the other drivers fault as he was driving on the wrong side of the road. It took over 8 years to get the settlement and the amount covered the amount of earnings that both my parents lost as they both had to give up work (my mum still can't work now) and just s small amount more. They are worse off now than they were before really as they can't use the money they got for general living expenses as my mum will more than likely have to go in a home at some point and do the money needs to be there to pay for that. 
I've been well and truly put off suing because if my mums experience, and actually other people I know. For the whole time the claim was going on the should family lived and breathed the claim and life didn't really progress.


----------



## essie0828

RachA your familys' experience is exactly what I worry about if I do persue legal action. More than likely it will drag on for years and I'm sure the lawyers' cut will be huge. Depending on the amount of involvement needed from us it could get quite miserable along with all DDs' therapy. And there's always the chance that nothing will come out of it..... but there's also a chance they will settle out of court after some pressure. Girls this video is graphic. You would think you are watching a still birth. I'm sure that it will make any cold blooded lawyer cringe. And you can clearly hear the techs saying that the suction unit had failed. Lord who knows what will happen :(. I'm hoping the right lawyer can take all the hassle out of things. I still haven't decided to sue, but I have decided to meet with a lawyer. She will have to be damn convincing that our involvement will be minimal. And then if I decide we have a chance I have to interview a couple other lawyers to make sure I choose the right one. I have lots of homework to do :haha:

AF is on her way. Due tomorrow and I'm spotting now so I'm sure our little accident didn't take.


----------



## bumpin2012

Essie, I can see why you would worry, and I think your plan to really weigh you options after interviewing a few lawyers will certainly give you some sense of whether or not it is something you wish to pursue. I only know 1 person (I worked in the nursing home he lives in) that has pursued legal action for something major. He was awarded a VERY large settlement, plus ALL of his medical expenses for the remainder of his life. He was only 35 and will require life long care in a nursing home because of a car accident that left him a technical quad. I have to assume with video indicating medical malpractice you may have a very strong case.

Sorry to hear AF will be making an appearance...How long have you been NTNP? 

Sequeena, I guess its up to you to join me in first tri!


----------



## essie0828

We've been ntnp since last December but mainly NOT trying. I want another but I think I need to wait a few months. DDs' therapy is just starting and it's going to be intensive. Plus surgery for tubes on the 18th and the helmet thing on the 25th....... It's going to be a busy month.


----------



## bumpin2012

fair enough. Im still thinking im nuts for doing this so soon, and Gabriel does not have the gameplan that Hailey does (sorry if I spelled that wrong :S)


----------



## sequeena

I won't be joining you this month. OH working nights means no time for any naughty stuff.

Thomas picked up a toy car earlier and said car. Could he coincidence but I think he knows the word :cloud9:


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## essie0828

Bumpin I'm sure you will be great with 2. You have experience already on your side ;) DH said tonight that if we get to have a boy he has to name him Gabriel. He said that every guy he meets that has that name is a nice, interesting guy :haha: I was thinking, "Thank God!" I'm just not down with the whole Jr thing :rofl:

Yay Thomas! Clever little man. Lets do the new word dance :happydance: Oh Yeah! :happydance: Little boys and cars, inseparable :haha: Hayley is trying to say "book" now. She can't do the oo sound though so it sounds a little odd. But bless'em they are trying. :hugs: 

So I found a place close by that does hippotherapy! Horse therapy basically. I'm so excited. They work through the rehab hospital that I'm trying to get Hayley into :happydance: Physical, Speech and Occupational therapy using equine therapists. Yay! What little girl doesn't love a pony ;)


----------



## sequeena

Essie that sounds awesome, Hayley will definitely love that!

Go Hayley trying to say book! :dance:


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## essie0828

That sucks about the night shifts sequeena. How long will he be on nights?


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## essie0828

https://www.ckrh.org/overview.htm

Here's the website to the hippotherapy place if you got some time to burn. It looks really nice.


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## sequeena

essie0828 said:


> That sucks about the night shifts sequeena. How long will he be on nights?

This is his last week thankfully :) He'll be off Friday and Saturday then days Sunday. He has to do nights periodically though. He runs the department and needs to cover shifts when night guys are on holiday.


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## essie0828

Oh man. Switching over from nights to days, days to nights is rough. I used to have to do that a lot when I was a 911 dispatcher. It got so bad that I couldn't sleep at all and had to take Ambien. Poor guy.


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## essie0828

Is T sleeping any better?


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## sequeena

Oh he has no trouble switching don't worry, he sleeps as long as he likes which is pretty damn annoying!

Nope, he's awake, lying quietly beside me though which is a relief.


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## essie0828

:rofl: How can men do that!? DH is like that to. He can sleep anywhere, anytime. Wtf! 

Aww little night owl :). Give him a cuddle for me.


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## bumpin2012

I don't mind working night shifts ( I'm actually working one now) :haha: just waiting for my patient to arrive from another icu.

Essie: the hippotherapy sounds awesome!

oh, and I love the name Gabriel ( obviously) it was the ONLY name we could agree on while I was pregnant. we have already disagreed on every suggested name for this bean, other than to call it " bug" until it's birth... I don't think that's a realistic first name though...


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## essie0828

Bumpin what do you do? Job wise :) I used to work nights exclusively when I was pregnant with DD. I liked it a lot. But that switching shifts stuff gets me down.


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## sequeena

Night owl indeed! It's almost midnight here!


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## essie0828

How's little Gabe doing?


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## essie0828

I thought so sequeena. Y'all are 5hrs ahead of us here. Hayley starts winding down at 10 ish and is usually asleep by 11. 

She just said "book" almost perfect! :happydance: She said it real slow, like "booook" HA! A new word! Put that on your "evaluation" First Step ladies. :p


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## sequeena

Well done Hayley :happydance:


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## essie0828

I knew she understood the word book because she will look at her books when I say it. She adores cardboard books. And bath. She will jump up and down if I ask if she wants to get in the bath. I'm so proud of her. She's working so hard on new stuff :cloud9: 

I'm dreading this helmet stuff. She hates to have her head messed with. Not to mention with the way she head butts I'm afraid we are basically giving her a weapon :haha: I really hope she tolerates it.


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## essie0828

https://growingupwithadisability.blogspot.com/2008/02/for-parents-my-cerebral-palsy.html?m=1

Found this blog done by a young man with CP. I love his point of view. He talks about therapy being boring when he got older and how his parents kept him interested in working at it. It's worth a read if anyone has an extra min.


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## essie0828

www.artzooka.com

Does anyone watch this show?? The stuff this guy makes is great. Check out the artzookas tab, I especially like the magnetic town. Great crafts for the kiddos.


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## bumpin2012

I work in a cardiac surgery icu as an RN. it's been my favorite nursing job, and I've been here for 3 years now.


got a picture texted to me this evening - some little monkey is figuring out how to get into a stand by himself. @[email protected]


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## essie0828

Awww go Gabriel!!! :happydance: I thought you were a nurse ;).


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## bumpin2012

All I am thinking is "crap" Hes soooo fast now with crawling, I can only imagine how fast he is going to get when he can RUN. Sigh.


Its a good thing I have a new one coming...lol... My baby is growing up


----------



## Feathers

Hi ladies!

Sorry about my on and off-ness. SPD/PGP has kicked in big time so I dont get as much time online as I'd like anymore lol! Hope all is well with you all!

Olivia had her consultant appointment again today. Signed the permission slips for her MRI scan and she's being referred to a geneticist. We've been told it is a long waiting list as one only visits up here twice a year! However her Consultant thinks it is worth doing so I guess we wait and see. We don't have any family genetic conditions that I know about which is comforting at least!


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## sequeena

Poor you Feathers :(

Well done on getting the referral for MRI/geneticist. Can't believe it can only happen twice a year, that's ridiculous!

We took Thomas to a new playgroup today and we both enjoyed. We'll be going back :D

I rang T's speech therapist today as I've not heard anything for a while. He's on a group list but they don't know when the group will start :dohh:

T is breaking his heart when Sean is leaving for work :( Actually he's breaking his heart when any of us leave. I don't know what to do about it :(


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## RachA

Feathers: we're also having to have Esther's genetics looked at. At the moment we are having to provide a blood sample from each of us as Esther's blood showed an abnormality. Tbh not sure what happens once the results are in. 
Can't believe that your place can only see you infrequently.


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## sun

bumpin - Awesome Gabriel! They do grow up so fast! 

Feathers and Rach - We did the regular genetic testing with B, but then they recommended the more invasive testing and we declined. 

essie - B loves Artzooka lol! And so do I lol. I like the guy that hosts it here as well (there's a different host for every country). Ours is in French.


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## bumpin2012

might be a dense question: what are you hoping to learn from genetics testing? Will it help with treatment? Or determine likelihood of issues with future children?


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## essie0828

Bumpin he will run your feet off when he figures out the running thing. :haha: You are gonna be one tired pregnant lady. Oh well, full hands, full heart ;) 

Speaking of genetic testing....we were offered it as well but the neurologist said that it wasn't important unless DD was regressing? And she then proceeded to ask some uncomfortable questions about if DH and I were related. God, all I could think was we are from the same small town but his family moved there when his dad was born. They were from another state. My ancestors had settled the land, literally. I told her this and told her that we had some limited genetic testing done on 2 babies I had lost before DD and they were normal. After that she pretty much took the genetic testing out of the equation and focused on CP. But honestly I still wonder...... history of miscarriage, DD with CP...? Makes me worry about trying for #2, medically speaking, but I know I'll love and care for my child/children (if I'm lucky) no matter what.


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## essie0828

Feathers I think we will be doing an MRI when DD is a little older as well. Hopefully you will get some answers that will help your LO. :hugs: It's a lot to deal with especially when you're uncomfortably pregnant. :haha: 

Sequeena :happydance: for the new playgroup. It's great that both of you had fun :) Poor little T. That sounds like super separation anxiety. DD will do this especially if she is tired or sick. Is he feeling well? How long does it take to calm him after someone leaves? I wish I had a good solution for you. With DD it's distraction after distraction until she tuckers out but she's easy compared to her little cousin. He cries and screams and searches for his dad for hours :(

RachA I hope the testing comes out well :hugs: Esther is making progress with her therapies and I believe that is a great indicator that her genetic issues will not be so severe. It's all so scary though. Getting a diagnosis of any kind really hits hard :hugs: 

Sun how invasive were the tests?? I have no clue how they do them. How's B doing? Ha! I didn't know each country had a different Artzooka host. That's neat! It would be fun to watch it in french and see how much I could remember from high school :haha: I took it as a elective language but can't remember a fraction of it as no one around here speaks it and I stopped practicing long ago.


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## essie0828

Well DD took a couple steps on her own today. She had a checkup today and was trying so hard to walk over to a hyperactive little 3yro blonde boy. :cloud9: He was ALL OVER THE PLACE. His poor mum was trying to tend a tiny infant and chase after him :haha: She was a bit frazzled. He was delayed in speech and his mom said he had no clear words yet. He made sounds so similar to DD. It was kinda odd and neat to watch them together. She pulled out all the stops to try and communicate with him. She did her "come here" gesture holding out her hand, palm up and flexing her fingers back and forth. Then she tried babbling some and in the mean time he was doing acrobatics and putting on a great show for DD. She loved it! Then she grabbed my finger, pulled herself up to a stand and proceeds to pull me to him. She was barely using me for balance so I snuck my finger out of her hand and before she realized that she took a few wobbly steps on her own :cloud9: It was a good day. DH got to be there to :)


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## essie0828

And I have to gush some more about her new potty skills :haha: She's going on her potty at different times of the day now. :cloud9: We were only consistently getting her to pee on the potty first thing in the morning, now she goes after naps to :happydance: She's learning to hold it when she first wakes up. Yay!


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## RachA

Yay-really good progress Essie. :)


Re the genetic testing: I'm not actually sure what we are hoping to get out of it if I'm honest. My OH is very much the type of guy who wants answers if possible so he wanted to go ahead with the testing. I wasn't too bothered. I guess at the end of the day if neither of us show up the same abnormality that Esther has then it means this abnormality is what's causing her delay.


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## bumpin2012

Essie: Wow that sounds like some amazing progress! That interaction between her and the little boy sounds like it was super cute :)

Sequeena: Poor little guy. I have heard that separation anxiety can come and go with varying intensities, so maybe its just something to wait out?


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## essie0828

RachA the whole genetic testing thing confuses me some. I know they look for some syndromes and things in genetics but honestly its pretty much like another language to me. I have some limited understanding but nothing helpful :( 

In DDs' case it probably won't help us find out anything more than we know now but I may follow up with it later.


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## sequeena

Hey girls just a flying visit for me. T is spending the day with my aunt and cousin's but I'm pretty busy food shopping, cleaning, sorting stuff etc.

Well done Hayley! She's doing so well Essie, seriously. T is nowhere near potty training!

As for T's separation anxiety it's not so bad that he screams all night but he will cry for a good 10-20 minutes after Sean leaves for work. At playgroup I was only gone for 5 minutes at most and when I came back he was just calming down.

He went this morning with my aunt and cousin's and didn't look back haha! He blew me a kiss when I was waving to him :cloud9:


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## essie0828

Thanks sequeena! Hayley is no where near trained either. It's more of me making a mad dash to the potty with her after naps and first thing in the morning. But if I get her there she will pee pee and then we celebrate :haha: I've never potty trained a kid before, only puppies :rofl:

Aww what a sweet little man blowing kisses. That's adorable! God what will we do when we're sending them off to school :nope: Hope you have a great day and get some relax time done along with your chores. ;)


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## essie0828

Sequeena Hayley will cry that long for her dad sometimes :( Usually if she is very tired though. Most of the time I can get her calmed down after about 5 min. If she's really upset the little thing will cry herself to sleep on my shoulder :nope: It breaks DHs' heart so bad he tries sneaking off whenever possible. 

She had a finger stick done yesterday and he got so antsy while she was crying. :haha: He scooped her up and took off to the play area before the nurse could even give her a sticker :rofl: He said he couldn't help he had to get her outta there. Men!?


----------



## RachA

essie0828 said:


> RachA the whole genetic testing thing confuses me some. I know they look for some syndromes and things in genetics but honestly its pretty much like another language to me. I have some limited understanding but nothing helpful :(
> 
> In DDs' case it probably won't help us find out anything more than we know now but I may follow up with it later.

It kind if is a bit something and nothing. I don't think that it's going to give us answers. Thankfully Esther is really good at blood tests as she's had quite a few.


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## sequeena

What's a finger stick? x


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## essie0828

sequeena said:


> What's a finger stick? x

They were testing her hemoglobin. It's where they poke their little finger with a needle to get a couple drops of blood. :haha: I have no clue what the proper name for it is. What is it called where you are? 

First Steps Coordinator, a speech therapist and a physical therapist will be here tomorrow at 1130am to meet with us and explain what therapies we will be doing for the next 6 months :happydance:

How's T doing with the separation anxiety? Any better?


----------



## essie0828

Hayley kept me up almost all night last night. She's not self settling at all and her gums are a mess from her canine teeth coming in. Really hope tonight is better.


----------



## sequeena

Poor Hayley :( :hugs: how did the appointment go?

Oh, I guess we just call it a finger prick or something :haha:

T is ok, not sure how the anxiety is as I've not had to leave him. We were out before Sean went to work (family birthday meal) so he didn't notice. He did pout a bit when Sean dropped into the restaurant and left a few minutes later but he loves my family so forgot about it pretty quickly.

Pretty sure he tried to say Percy today. He was showing me his train and I said 'his name is Percy. Can you say Percy' and he made a noise I've never heard before.


----------



## essie0828

:happydance: Go T, go! That's awesome. Aww bless him I like Percy the best ;) I've only watched the show with Hayley a couple times but she LOVES the song. Ha! You should hear a redneck trying to put on that accent :rofl: The way he acts when his dad leaves sounds very normal. He just loves and misses his dad, how sweet. 

Still have 1 hr 45 min till "The meeting" :haha: I'm nervous. They tell how far behind DD is today and I'm trying to work out how to keep my reaction under control. I cry at everything. Ugh, it's sooo embarrassing!


----------



## sequeena

You've had the worst news, you'll be fine. I'm sure she's not that bad either, when they said T was 10 months mentally I felt sick but it's just a number.

Thomas is his favourite ;)


----------



## essie0828

Well that wasn't bad as I thought. The physical therapist was nice and Hayley liked her. The speech therapist couldn't make it :(. We will be doing physical therapy once a week for an hr and speech therapy twice a month with the First Steps program. We will also be doing outpatient therapy at Cardnil Hill (if they will hurry up with the freakin referrals) :dohh: This is going to be a scheduling nightmare. Oh well my baby girl is getting the help she needs, finally! :happydance: 

As far as the assessment goes, the type Hayley took doesn't give a developmental age like what T got. They said this is because Hayley already has an established risk with the CP diagnosis. Also the lady didn't bring the copy of the report but said mine was in the mail. Grr. And hubby has the keys to the dang post box so I can't check the mail till he gets home. :wacko: I want that report! She said it will show things Hayley is doing and what her peers are doing so we know what to work on.


----------



## essie0828

It's quiet in here laddies. I suppose everyone is busy with their kiddos :hugs: 

My referrals went through to get Hayley into outpatient therapy at a nearby rehabilitation hospital :happydance: Warm water pools, horse therapy, and awesome facilities here we come :happydance: there is a waiting list for some services though. I'll be calling today to schedule ;)


----------



## RachA

That sounds really great Essie. 


It has gone really quiet-we're busy with being back at school. 

We are still waiting for Esther's next lot of speech therapy. It's really annoying me now. How can their be any continuity if there is 4 or 5 months between sessions!!!
Esther's settled into having an extra session at Playschool. The only issue we have with her is that the SENco has another girl (she is autistic) now. She's only just started so is clingy. Esther is feeling a bit pushed out. She'll be fine though, once she's used to the new girl. It's not as if she's not had the share the SENco before but last year all the children with special needs started at the same time so she didn't know any different!


----------



## moggymay

Back to school here too. Jack is loving pre-school though and it really helps that they are both at the same school. Speech is progressing but seems to be stalling again, next assessment due 9th October and no SLT until then :( We too are in the "6 week block ages off" scenario too Rach...just want him to seem to have someone else prioritising him too, surely they could be better organised?


----------



## bumpin2012

morning sickness is kicking my ass... and Gabriel insists on doing everything he's not supposed to. like trying to climb my curtains, throw the laptop on the floor, empty the garbage on the floor, get into the cat box/ toilet/etc... where did my ready going toddler go? it's been about a week of non stop tantrums.

we also decided to list our Condo for sale in a week or so. we have to do a major clutter removal, and a super clean...


----------



## Feathers

Sorry been quiet. Im suffering with PGP pain so badly now. My work has been asked to make reasonable adjustments but it looks likely I'll just be off work entirely soon which has been hard on DD who just wants Mummy to play on the floor with her like usual and doesnt understand why a leg kicking competition laying on my back isn't filling me with joy as it is for her ;)

She's growing so fast and her understanding is really coming on. She said her first 4 word sentence a couple of days ago! (Say byebye to Jojo) In the correct context etc. And now she's learnt the sign for food she's signing for it all the time. Youd think she was starving lol!

Hope the morning sickness isn't going too badly bumpin2012! It's hard with a little one isn't it!


----------



## sequeena

essie0828 said:


> Well that wasn't bad as I thought. The physical therapist was nice and Hayley liked her. The speech therapist couldn't make it :(. We will be doing physical therapy once a week for an hr and speech therapy twice a month with the First Steps program. We will also be doing outpatient therapy at Cardnil Hill (if they will hurry up with the freakin referrals) :dohh: This is going to be a scheduling nightmare. Oh well my baby girl is getting the help she needs, finally! :happydance:
> 
> As far as the assessment goes, the type Hayley took doesn't give a developmental age like what T got. They said this is because Hayley already has an established risk with the CP diagnosis. Also the lady didn't bring the copy of the report but said mine was in the mail. Grr. And hubby has the keys to the dang post box so I can't check the mail till he gets home. :wacko: I want that report! She said it will show things Hayley is doing and what her peers are doing so we know what to work on.

Oh dear about the speech therapist :( Glad the rest went ok though. Did you get the report?



essie0828 said:


> It's quiet in here laddies. I suppose everyone is busy with their kiddos :hugs:
> 
> My referrals went through to get Hayley into outpatient therapy at a nearby rehabilitation hospital :happydance: Warm water pools, horse therapy, and awesome facilities here we come :happydance: there is a waiting list for some services though. I'll be calling today to schedule ;)

That sounds awesome! Did you get a date set up?



RachA said:


> That sounds really great Essie.
> 
> 
> It has gone really quiet-we're busy with being back at school.
> 
> We are still waiting for Esther's next lot of speech therapy. It's really annoying me now. How can their be any continuity if there is 4 or 5 months between sessions!!!
> Esther's settled into having an extra session at Playschool. The only issue we have with her is that the SENco has another girl (she is autistic) now. She's only just started so is clingy. Esther is feeling a bit pushed out. She'll be fine though, once she's used to the new girl. It's not as if she's not had the share the SENco before but last year all the children with special needs started at the same time so she didn't know any different!

I so understand!! Thomas had his last SALT appointment on June 18th. They then decided he's go into non signing group session. I rang them to see what's going on and they don't know when they'll start these sessions??? Really? It's been 3 months now and TBH I'd be surprised if we get a date before Christmas!

Bless Esther :hugs: I hope she's not feeling pushed out now.



moggymay said:


> Back to school here too. Jack is loving pre-school though and it really helps that they are both at the same school. Speech is progressing but seems to be stalling again, next assessment due 9th October and no SLT until then :( We too are in the "6 week block ages off" scenario too Rach...just want him to seem to have someone else prioritising him too, surely they could be better organised?

Glad he's enjoying pre-school :hugs: Hope the assessment goes well, seems so far away doesn't it.



bumpin2012 said:


> morning sickness is kicking my ass... and Gabriel insists on doing everything he's not supposed to. like trying to climb my curtains, throw the laptop on the floor, empty the garbage on the floor, get into the cat box/ toilet/etc... where did my ready going toddler go? it's been about a week of non stop tantrums.
> 
> we also decided to list our Condo for sale in a week or so. we have to do a major clutter removal, and a super clean...

Poor you :hugs: MS with a toddler ust be hard :( Good luck with selling your Condo... though I don't even know what that is :haha: is it a house on the beach



Feathers said:


> Sorry been quiet. Im suffering with PGP pain so badly now. My work has been asked to make reasonable adjustments but it looks likely I'll just be off work entirely soon which has been hard on DD who just wants Mummy to play on the floor with her like usual and doesnt understand why a leg kicking competition laying on my back isn't filling me with joy as it is for her ;)
> 
> She's growing so fast and her understanding is really coming on. She said her first 4 word sentence a couple of days ago! (Say byebye to Jojo) In the correct context etc. And now she's learnt the sign for food she's signing for it all the time. Youd think she was starving lol!
> 
> Hope the morning sickness isn't going too badly bumpin2012! It's hard with a little one isn't it!

Oh poor you Feathers! That sounds really painful :( Well done DD that's fab that she has a 4 word sentence! The signing is great too, is she a bottomless pit or is it just the excitement of learning something new?

I've been AWOL too, sorry. Been a bit busy and now I have a cold :( yesterday was really rough. Feeling a bit more human today though.

Welfare Rights came to the house yesterday and now we're in the process of collecting all the evidence we need for the DLA claim. I'm nervous, I know it will be a no first time round.

T has lost all his words including the favourite uh oh... I'll be honest girls I do worry he has autism.


----------



## bumpin2012

Sequeena: a condo is an apartment that you own, you pay a small monthly fee that takes care of all maintenance, and future repairs. basically hubby and I own 1/50 of an apartment building... Lol. it's a great set up without kids, but now that we're going to have 2, we need a yard!

Could he be just going through a phase? Like he just doesn't want to and is exerting his toddler right to be stubborn?

Feathers: yay for a full sentence! that's fantastic!


----------



## sequeena

Ohhh I see, yes I can see why you're selling it!

I don't know what's up with him, I can't help but worry :( whatever happens though I know it'll be fine, I just hate the unknown.

T is watching disney junior now. I want to get him out but I'm still recovering and don't have much energy :(


----------



## essie0828

Hi ladies. 

In pre op with DD getting ready for surgery :( I really don't want to let her go........... Ugh. This is hard.


----------



## essie0828

Girls :hugs: to everyone. Will reply in length soon. Sequeena it's hard not to worry. And your right it will be ok ;)


----------



## sequeena

essie0828 said:


> Hi ladies.
> 
> In pre op with DD getting ready for surgery :( I really don't want to let her go........... Ugh. This is hard.

She's getting her tubes today? Good luck, she'll be fine :hugs: you will worry though but don't sit around. Go to the canteen, get a coffee and something to eat.


----------



## essie0828

Yeah she's getting tubes in her ears today. In about 20 min to be exact. :wacko: Can't wait to get my baby home.


----------



## sequeena

essie0828 said:


> Yeah she's getting tubes in her ears today. In about 20 min to be exact. :wacko: Can't wait to get my baby home.

It's a simple op it'll be over before you know it :thumbup:


----------



## essie0828

Well she went with the nurse without crying and I can't stop. :( Thanks sequeena :hugs: Ts' thumb surgery is coming up soon to??


----------



## sequeena

It's hard when you hand them over :hugs:

Yes, T's is soon. Though no idea when as I've still not had a date.


----------



## moggymay

Hope all went to plan for her :hugs: GA is hard to watch especially when they dont really understand what is happening, plenty of cuddles after will help her though.


----------



## Tiff

Hello!  I just noticed this thread now. :blush: I'm so bad with actually visiting the forum of things... I tend to just look in my CP. 

My daughter has ASD and is developmentally behind in gross/fine motor skills, emotional needs and speech. Am I able to join in? :flower:

Essie - I bawled the entire walk home on Claire's first day of school, even though she was happy to go. Its SO hard to give them to someone else who doesn't know/love them like we do. :)


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## sequeena

Hello tiff yes you can join! :hugs:

What would you like me to put on the front page?


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## bumpin2012

:hugs: Essie. I hope everything went well 

we have very clumsy steps! he's determined to go, but just lacks the balance. he can manage close to 10 steps, but usually falls after 4... he's so Fricken cute when he's doing it. so proud of himself


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## sequeena

Aww well done little man!


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## Tiff

sequeena said:


> Hello tiff yes you can join! :hugs:
> 
> What would you like me to put on the front page?


Claire is turning 5 in December, she's diagnosed with Autism Spectrum Disorder. She has developmental delays with fine/gross motor skills, and is a flight risk.


Well done little man!!! It is SO cute to see them try and figure out how to walk then they actually do. :cloud9:

Rough day today. Claire was excited for school, now hates it. We live close to her school but they send a van to come get her as when she doesn't want to do something she'll flop on the ground and refuse to move. In talking to her teacher I found they were putting extra expectations on her in the afternoon - hence the morning meltdowns to get her to go in the first place. Her teacher is going to back off on that but its heartbreaking to see her so upset and agitated to go. Its a fight to even get her in the van!!

Heartbreaking to watch her little face sob as it drives away too. :(


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## sequeena

Oh no poor Claire :( Stupid teacher!!


----------



## sequeena

I had a letter this morning to say that Thomas is now on the waiting list for his op... so it's been 6 weeks since his appointment and he's only just gone on. So much for getting it done ASAP :growlmad:

My HV is coming round on Monday too.

Also, Sean had a message on his phone about a child disability team. No idea who they are so will have to ring them tomorrow. It may be his specialist HV but I am not sure...


----------



## sequeena

Actually scratch that, I just found out who they are. https://www.npt.gov.uk/default.aspx?page=583

And I just started crying reading it. I don't know why I'm crying!!!!


----------



## essie0828

sequeena said:


> I had a letter this morning to say that Thomas is now on the waiting list for his op... so it's been 6 weeks since his appointment and he's only just gone on. So much for getting it done ASAP :growlmad:
> 
> My HV is coming round on Monday too.
> 
> Also, Sean had a message on his phone about a child disability team. No idea who they are so will have to ring them tomorrow. It may be his specialist HV but I am not sure...

Just now on the waiting list!? That's crazy. I hope you guys can get it done soon and his little thumb gets better. Is he still not talking?? Sweet little guy, I hope he's just being a little stubborn. I still worry about ASD with Hayley. It's an associated disorder that can sometimes come along with CP because of the neurological nature. :hugs: I hope you feel better soon. Cuddle that cute little golden haired angle for me a few times. Let us know how the visit from the HV goes.


----------



## sequeena

He's lost all his words, that's the worrying thing. He's gone back to babbling and it scares me.


----------



## essie0828

:hugs: It's ok hun. It's that word that gets ya. Disabled. It was for me. Hayleys doctor said it 4 times and I heard nothing else he said. All I could think is "She can't really be Disabled." Just remember its just a word, T is and will always be his marvelous self despite that word. It's ok to be sad and grieve. I had to grieve for the future I thought we would have before the diagnosis and accept the new future we will have. It ain't easy. Be good to yourself and take your time. :hugs:


----------



## sequeena

Thanks hun, I thought I was over it by now :shrug:


----------



## essie0828

I see why you are worried. I would mention it to everyone working with him. It may change how they work with him. Hayley has had some regression in language that lasted a couple months then she picked up a bit but she's not a talker. She's a babbler. 

Im sorry you're worried about him. I hope this new disability team can get him into lots of programs abd services that will help both of you. It really sounds like our First Steps program here. Except theres no continuity between health and therapy. I bridge the gap there. Picking her specialists and medical treatments.


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## essie0828

sequeena said:


> Thanks hun, I thought I was over it by now :shrug:

It will never be over hun. That pain will always stab at us. :hugs: But eventually it will dull some. Our kiddos are still so young and this is still a learning/ adjustment phase.


----------



## essie0828

moggymay said:


> Hope all went to plan for her :hugs: GA is hard to watch especially when they dont really understand what is happening, plenty of cuddles after will help her though.

Everything went well. Longest 30 min of my life but she's forgotten all about it now. Worst thing was I wanted to cuddle her something awful when she woke up but she only wanted her papa. :dohh:


----------



## sequeena

Thanks :hugs:

How is Hayley doing after her op?


----------



## essie0828

Tiff said:


> Hello! I just noticed this thread now. :blush: I'm so bad with actually visiting the forum of things... I tend to just look in my CP.
> 
> My daughter has ASD and is developmentally behind in gross/fine motor skills, emotional needs and speech. Am I able to join in? :flower:
> 
> Essie - I bawled the entire walk home on Claire's first day of school, even though she was happy to go. Its SO hard to give them to someone else who doesn't know/love them like we do. :)

Tiff, her being out of my sight for 30 min was torture. I can't even fathom how I will handle her going to school by herself. :nope: I will probably be stalking around the school grounds like a nutter just trying to make sure she's ok :wacko: 

I hope the teacher gets a better feel for Claires' pace and the meltdowns stop. It's so hard to force them to do something. :( It breaks my heart.


----------



## essie0828

sequeena said:


> Thanks :hugs:
> 
> How is Hayley doing after her op?

She's doing really good! Last night after we took the cotton out of her ears she was babbling up a storm. Lots of new sounds coming from her and that really gets me excited :happydance: Hopefully once she heals fully her speech will take off. 

How are Ts' ears doing? Do you think that could be part of his regression? It's probably not the whole answer but it may help him some to be evaluated for his hearing again?


----------



## sequeena

essie0828 said:


> sequeena said:
> 
> 
> Thanks :hugs:
> 
> How is Hayley doing after her op?
> 
> She's doing really good! Last night after we took the cotton out of her ears she was babbling up a storm. Lots of new sounds coming from her and that really gets me excited :happydance: Hopefully once she heals fully her speech will take off.
> 
> How are Ts' ears doing? Do you think that could be part of his regression? It's probably not the whole answer but it may help him some to be evaluated for his hearing again?Click to expand...

Oh wow, that's really great and encouraging! He won't see the ENT doctor again until November but yes I think he still has glue ear. Did Hayley's affect the wax in her ear? As Thomas has loads, it over spills onto his face :wacko:


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## essie0828

bumpin2012 said:


> :hugs: Essie. I hope everything went well
> 
> we have very clumsy steps! he's determined to go, but just lacks the balance. he can manage close to 10 steps, but usually falls after 4... he's so Fricken cute when he's doing it. so proud of himself

Bumpin she did great. Lots of gunk came out of her ears and she really seems to enjoy hearing her voice now :cloud9: lots of babbling and trying to talk. Except for in speech therapy today, she was quiet as a mouse. :dohh: Figures! 

:happydance: Go Gabe Go! :happydance: Oh yeah! Move those feet little buddy. Hehe. Pregnant mama and a mobile little man :haha: Good luck! That's such good news bumpin. He really may just be taking his time developmentally ;)


----------



## essie0828

sequeena said:


> essie0828 said:
> 
> 
> 
> 
> 
> sequeena said:
> 
> 
> Thanks :hugs:
> 
> How is Hayley doing after her op?
> 
> She's doing really good! Last night after we took the cotton out of her ears she was babbling up a storm. Lots of new sounds coming from her and that really gets me excited :happydance: Hopefully once she heals fully her speech will take off.
> 
> How are Ts' ears doing? Do you think that could be part of his regression? It's probably not the whole answer but it may help him some to be evaluated for his hearing again?Click to expand...
> 
> Oh wow, that's really great and encouraging! He won't see the ENT doctor again until November but yes I think he still has glue ear. Did Hayley's affect the wax in her ear? As Thomas has loads, it over spills onto his face :wacko:Click to expand...

No she never really had any drainage from her ears. Waxy or runny. And when she did have wax it was usually clumpy and kind of fell out. If he is having enough drainage to leak onto his face it kind of sounds like his ear drum has a hole in it already. :shrug:
All of Hayleys' docs would ask about how much drainage she was having from her ears and would tell me that sometimes that's how ear infections would resolve themselves. The pressure and bacteria activity eventually puncture the ear drum to drain the ears naturally. Problem is the drain doesn't stay open and the process repeats itself.


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## essie0828

Her ear drums were always bulging out from the pressure but no fluid would drain. Hence the tubes. Now all kinds of gunk is coming out.


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## essie0828

Now if we can just keep them dry and keep from introducing new bacteria into the tubes I think we will be good to go.


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## essie0828

Feathers said:


> Sorry been quiet. Im suffering with PGP pain so badly now. My work has been asked to make reasonable adjustments but it looks likely I'll just be off work entirely soon which has been hard on DD who just wants Mummy to play on the floor with her like usual and doesnt understand why a leg kicking competition laying on my back isn't filling me with joy as it is for her ;)
> 
> She's growing so fast and her understanding is really coming on. She said her first 4 word sentence a couple of days ago! (Say byebye to Jojo) In the correct context etc. And now she's learnt the sign for food she's signing for it all the time. Youd think she was starving lol!
> 
> Hope the morning sickness isn't going too badly bumpin2012! It's hard with a little one isn't it!

You poor dear :hugs: Work, raising a bun and baking one! Whew! I get sore just reading about it. I hope your work arranges something for you, or heck, if you can afford it I hope they put you off. Go home and rest! 
:happydance:
:happydance: For new words, yeah! Lol, it's funny she likes the sign for food. My DD said cookie all the time after she learned it. But then again who wouldn't if you got a yummy cookie every time. :rofl: She went through a whole box of teddy grahams in no time!


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## sequeena

Ears are confusing :dohh:


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## essie0828

sequeena said:


> Ears are confusing :dohh:

:rofl: yes they are! I had no clue a childs ear could do that. Or an adults for that matter. And I have had a couple semesters of Anatomy and Physiology :haha:


----------



## essie0828

sequeena said:


> Ears are confusing :dohh:

:rofl: yes they are! I had no clue a childs ear could do that. Or an adults for that matter. And I have had a couple semesters of Anatomy and Physiology :haha:


----------



## essie0828

Ok this is a little off topic but....

DDs new Speech Therapist is female and taller than me. She's about 6'2" in tennis shoes! And she's gorgeous. I seriously thought I was going to have to shut DHs' mouth myself :haha: Asshole! But I understand. Lol, the reason I knew a little about ear infections and surgery and blah blah....was because the tech explaining all of it was a super handsome man. Like movie star handsome and I may have asked a few extra questions just to keep him talking longer. :rofl: Don't get me wrong we don't cheat, but come on, who don't window shop? :rofl:


----------



## essie0828

So DD's therapy schedule is starting to explode. We now have therapies scheduled for Monday (speech), Tuesday (physical), Wednesday is free for now, Thursday (speech), Friday (occupational). 
Whew! And we still have another PT slot to schedule :wacko: She's a busy, almost 19 month old, little girl.


----------



## SammieGrace

My little boy, age 2 now, did about 8 months of PT and now that he is walking well he is on to speech. Cullen can say "hi" "dada" and "uh oh". We took him off of gluten about three weeks ago and he has recently started saying "shoe" and "cookie"! I am so proud of him starting to talk more and he seems to be doing better off of gluten. He is in speech one day per week and in a fulltime daycare class with about 4 other kids ages 16 months to 2 and a half. The speech therapist says he has verbal apraxia, or trouble making the mouth movements needed for speech.

We have an appointment with a pediatric neurologist in October, which I am hoping will provide some answers about what is going on with him.

We are also thinking of taking him to the Autism and Communication Disorders Clinic at Georgetown for an updated assessment.


----------



## Tiff

:haha: Essie, I very much wish that any of Claire's therapists were hotties! Would make it that much more interesting ha ha. :blush:

Sammie - Well done on your little man's progress! We've looked into the gluten free diet, but luckily Claire is a good eater and we were told not to mess with that. 

We've done our home study for ABA therapy and we're now waiting for them to actually start with her. This will be the first form of therapy that Claire will have since getting her diagnosis last October. Looking forward to it!


----------



## sequeena

Hey girls sorry I've been MIA, how are we all?

I took Thomas to Thomas Land on Saturday, he loved it :) it took him a while to warm up as he was so overwhelmed but I managed to get him on a few rides and we had a lot of fun. I can't wait to take him back sometime next year!

Yesterday I had my health visitor and a social worker from the child disability team at the house. Things are really moving now and I'm feeling a bit overwhelmed myself.

They're applying for all sorts of grants - for driving lessons, sensory equipment, a carrier (ergo/mei tai etc), a nursery placement and more. My head is spinning. I am grateful for all the support and so glad T is having this opportunity but it just hammers home how much support he does need and that is hard to deal with :cry:

The social worker will be back to tell me the results of the assessment then portage will be out in a few weeks to start working with Thomas. We're still in the process of getting him DLA. We've gathered together the reports from his doctors and my HV has written a letter of support. The social worker is also going to write one. I pray we get it. It would enhance Thomas' life so much.

I am just very emotional at the moment :cry: everything seems so much more real now and it's so hard to swallow.


----------



## sun

Hugs sequeena :hugs:

I remember that feeling from one of our earlier appointments where they gave us the list of appointments and therapies. Then we went to a support group (also recommended) and I realized that this thing I had feared most really was our reality. But that was at first. The great thing though is that the therapies and groups are SO helpful and seeing him progress and learn and socialize just makes me so proud. 

B has now been in regular kindergarten for 3 weeks and it's going ok. I still worry so much though, because the other kids are older (4-4.5) and they are social in a way that he doesn't understand. They're loud, and they can taunt each other or do things he doesn't get (nothing bad - just things 4yo kids do). So he doesn't get it and is a bit scared of them so watches from afar. The teacher has sent notes saying he's shy and why doesn't he talk, but I'm hoping she'll figure out that he actually is probably baffled by these kids. Because he's not shy when he can find another person that speaks his language! :haha: And speaking of language, he has yet to say anything at school - but I'm hoping with time he'll start chatting away as he gets more comfortable.


----------



## bumpin2012

sequeena, that sounds so overwhelming! :hugs: glad hee had a good time at Thomas land :)

sun: hopefully he settles in. is his teacher aware of his delays?

afm: had a very rough weekend. was feeling super ill up until Friday, and Saturday felt a bit of, and by Sunday I felt 100% not pregnant. called my OB in a bit of a panic, as I've never felt good while pregnant. was is for a scan today, and bug is measuring exactly 7 weeks, with a healthy little heartbeat flickering away. I'm baffled because I just feel normal, after 2 weeks of non stop nausea. but everything looks good

G has been refusing to try walking again. seems to offer the safety and speed of crawling. won't even walk holding our hands at this point. but I'm sure he'll get it eventually


----------



## sequeena

:hugs: Thank you, I feel better now. I went through the whole 'why us, why him' thing last night. It's good to let these emotions out though. I try to avoid speaking about it with OH as I think he has trouble with it too. All he ever says is he's fine, he'll get help.

Oh well done B. He'll get there, it can be very daunting but I bet he'll come on leaps and bounds :thumbup:

Glad you're ok bumpin! Don't worry G will be off again soon!


----------



## AP

essie0828 said:


> Ok this is a little off topic but....
> 
> DDs new Speech Therapist is female and taller than me. She's about 6'2" in tennis shoes! And she's gorgeous. I seriously thought I was going to have to shut DHs' mouth myself :haha: Asshole! But I understand. Lol, the reason I knew a little about ear infections and surgery and blah blah....was because the tech explaining all of it was a super handsome man. Like movie star handsome and I may have asked a few extra questions just to keep him talking longer. :rofl: Don't get me wrong we don't cheat, but come on, who don't window shop? :rofl:

Haha similar happened here, yet he won't admit it. There was this home teaching assistant that I had never met and DH started going on about how much she was like me, blah blah blah, and actually sounded like they had had a good chit chat, to the point he knew where her OH worked, I was like er, wtf?!?!?! Shes not on the scene thankfully!



Today we had Alexs ASD development worker up and she told us the results of alexs psychoeducational assessment, it came out at 2 years old rather than the 4 years old she is. Sigh. I hate hearing all that. :( I knew that though, shes on par with her sister.

Tori had a good day though, we had her speech class today and she was a joy. Later the ASD development worker had said she had never seen such a relaxed and compliant 2 year old. 

I dunno what they are meant to be like lol

They've gave us a list of suggested activities that her nursery have also been given. All very simple things for us to try.


----------



## Tiff

:hugs: Squeena. We were SO lucky that the early intervention services resource teacher did most of that stuff for us. She filled out all our info, applied for all the grants and just had us sign each of them and gave a brief explanation of what we were signing. Less stressful that way, and I would have felt like I was drowning if I had to do that on my own!

We were overwhelmed too with how much support Claire needs. Because she's our only, I forget that other parents don't have to deal with this sort of thing.

Sun - I had those same fears! Does B have an EA? I can't remember though I'm sure you've mentioned it before. Claire's EA really helps her to be interactive with her classmates, which I'm grateful for. :) 

Bumpin - I'm glad everything is okay with your bean!!! :hugs: :hugs:

Sandi - Ahh, those reports are definitely a kick in the gut. Even though you already knew it (I was the same with Claire) having someone else actually TELL us as much really freaking hurts! 


As for us, we had Claire's meet the teacher social last night at her school. We've already met the teacher a bunch of times with all the meetings and whatnot we had to have to prep Claire for school entry, but it was nice to look around her classroom. Some of the other kids even said hi to her while we were waiting for the teacher to unlock the door which warmed my heart. Claire loves other kiddos but has a difficult time interactively playing with them.


----------



## sequeena

AP :hugs: Also, happy belated birthday to Alex! :birthday: hope she had a lovely day!

Tiff we're lucky, the SW is doing it for us thankfully!

Bless those other kids :cloud9: it always makes me tear up a bit when other children willingly interact with Thomas. It's so sad, I know they are only children too but it breaks my heart when T just wants to play and they ignore him :cry:

All we've had today is a crying/whinging/throwing himself to the ground child. :growlmad: and he won't even go to bed.


----------



## AP

That ticket is confusing- it was her due date birthday this week :rofl: weird to think she was four in June and it should have been September. It seems ages ago!

Snap with the behaviour though. She's been on the floor screaming because she can't get an iphone...this has gone on all day


----------



## sequeena

Haha omg :haha: oh dear :blush:


----------



## essie0828

sequeena said:


> Hey girls sorry I've been MIA, how are we all?
> 
> I took Thomas to Thomas Land on Saturday, he loved it :) it took him a while to warm up as he was so overwhelmed but I managed to get him on a few rides and we had a lot of fun. I can't wait to take him back sometime next year!
> 
> Yesterday I had my health visitor and a social worker from the child disability team at the house. Things are really moving now and I'm feeling a bit overwhelmed myself.
> 
> They're applying for all sorts of grants - for driving lessons, sensory equipment, a carrier (ergo/mei tai etc), a nursery placement and more. My head is spinning. I am grateful for all the support and so glad T is having this opportunity but it just hammers home how much support he does need and that is hard to deal with :cry:
> 
> The social worker will be back to tell me the results of the assessment then portage will be out in a few weeks to start working with Thomas. We're still in the process of getting him DLA. We've gathered together the reports from his doctors and my HV has written a letter of support. The social worker is also going to write one. I pray we get it. It would enhance Thomas' life so much.
> 
> I am just very emotional at the moment :cry: everything seems so much more real now and it's so hard to swallow.


You poor dear. :hugs: It's harder when your DH is not on the same page as you. :nope:
DH and I had a stage like that, it lasted several months to. Ughh. Miserable times. :growlmad: I knew DD was different. I knew she had a neurological problem. But No One else in the family or her Dr.s would admit it yet. Even DH. It was very frustrating. He will see eventually but he's right to. T's gonna be just fine with help ;) I'm sure he will be. They will help him communicate. They will help him adjust. They will show him how to help himself. All the therapies and aids this child disability team will help you access will help you guys loads. It's sad but really good to :hugs: he's an amazing lil guy!


----------



## essie0828

Omg dito on the difficult child. Hayley just screamed and swatted at every nurse and dr today. All they did was gently touch her head. Then cranky all day. Trying to swat the dog, the cat, me.....ugh.... im hid in the bathroom while dh feeds her grapes and watches cartoons.


----------



## essie0828

I get a little upset that DD can't interact with other little kids but for other reasons. They just can't sit still and she can't move fast enough to follow :( Hopefully the braces her new pt is ordering will help with that. :happydance: Bless them. They have really did their homework to help us for free. Its great.


----------



## essie0828

SammieGrace said:


> My little boy, age 2 now, did about 8 months of PT and now that he is walking well he is on to speech. Cullen can say "hi" "dada" and "uh oh". We took him off of gluten about three weeks ago and he has recently started saying "shoe" and "cookie"! I am so proud of him starting to talk more and he seems to be doing better off of gluten. He is in speech one day per week and in a fulltime daycare class with about 4 other kids ages 16 months to 2 and a half. The speech therapist says he has verbal apraxia, or trouble making the mouth movements needed for speech.
> 
> We have an appointment with a pediatric neurologist in October, which I am hoping will provide some answers about what is going on with him.
> 
> We are also thinking of taking him to the Autism and Communication Disorders Clinic at Georgetown for an updated assessment.

Hope your neurologist appointment goes well. :hugs: I was really happy to get to talk to a pediatric neurologist finally. She was very thorough and knowledgeable. I hope they give you some insight.


----------



## essie0828

Tiff I'm glad seeing Claires' teacher and classroom helped put you at ease some. Wtg Claire for having a few little mates evidently :happydance:


----------



## essie0828

Bumpin glad you got to see your little bean and that all is ok
Seeing that first flicker is the best :cloud9:


----------



## Peanut78

Big hugs Sequeena :hugs::hugs::hugs: It's a process for sure, I still find I am on an emotional roller coaster with it all. I'll be fine for weeks and then have a week where I feel really down about it all. As Essie says, it also took my OH a while to really accept the extent of T's issues as well.

Tiff, that is wonderful you are feeling more reassured about school :thumbup:

Happy due date birthday Alex!

This week is a downer for me. I had a meeting with the SEN department and T's teacher yesterday. The meeting actually went well, but all morning I just had that sinking feeling of why does the need for this meeting even have to exist :cry: Why can't we just be one of those families that doesn't have to deal with SEN? 

I was a bit irritated with the guy from SEN. I made it very clear that I don't want T to have a shadow teacher. We have been consistently advised this from his therapists and nursery teachers over the years, as he does not have behavioral issues and he actually benefits more from being pushed to get on with doing things himself. Anyway twice the SEN guy tried to indicate that T has behavioral issues based on what I was saying (basically so they can push a shadow teacher on us which they financially benefit from and makes the teachers life easier as she doesn't need to focus on T as well). Once it was because he's had a few accidents at school this last week- for which I quickly said there were numerous children who were having more accidents than him in the class - and how is that a behavioral issue? Secondly, when I was trying to tell them that I am pretty stern with T that there is no opting out even when something is difficult/ boring etc. - so I told them that at home if he is refusing to follow the rules he has the option to sit in the naughty corner or do as he is asked. The SEN guy jumped on this saying "that's interesting how often are you needing to do this?" - again trying to imply that T has a behavioral issue :growlmad::dohh: What because he throws a wobbly or doesn't want to finish his dinner sometimes, just like all children do?!?!? This makes me so irate as it couldn't be further from the truth - T is such a well balanced, happy, emotionally intuitive and generally extremely compliant child - please don't add problems that don't exist to all the issues we are already facing. If anything it's his little brother who doesn't have any developmental issues who acts up and spends a lot of time in the naughty corner! His teacher agreed with me that he doesn't have any behavioral issues.

Anyway in the end he will not have a shadow teacher, he will receive ST at school :thumbup: and he will be part of a group that has sessions which work specifically on motor skills :thumbup: I have to have another meeting with the SEN guy, T's teacher and his OTs/ ST in 6 weeks time to see if there is anymore support we can tailor for T (great now I can have a lump in my stomach for the next 6 weeks :dohh:). I wouldn't mind if T had extra learning support for certain sessions that are especially challenging for him such as hand-writing, I just don't want someone helping him specifically with everything consistently all day. 

Ok, sorry that was long...


----------



## bumpin2012

that sounds stressful, peanut @[email protected]

it's 4am. Have just managed to get a difficult child to sleep. and I have to be up in an hour for work. needless to say, I'm using a sick day.


----------



## essie0828

Peanut I understand why you don't want T to have a shadow teacher. Especially if his regular teacher agrees that he doesn't have behavior issues. Wtg momma for standing up to them :happydance: You know him better and know what benefits him more. My DD is starting to show us that she responds better to a bit of a challenge as well. I have to admit though, I'm a bit of a pushover when it comes to her. Her new PT is a tough cookie though and DD loves her! She will be so much more patient with Miss Margret and she will work so hard for her. I think I need to get a little tougher :haha:

Bumpin my DD isn't sleeping well tonight either. Good idea on taking a sick day hun. You need one.


----------



## essie0828

Well ladies I have to brag on DD some. She's doing all kinds of new stuff, and I'm really proud of her and hopeful that her cognitive abilities will improve with time. She's starting to copy lots of our behavior, standing on her own for up to a minute (heels down!), and babbling all the time. :haha: She's figuring out the cabinet doors and I saw her celebrate to herself by clapping her hands when she got into a junk drawer I thought she couldn't open. Sneaky little girl. She originally rolled her ball in the kitchen and followed it in there...well when we heard her snooping around we snuck around the fridge and watched her without her seeing us. Up she stood and pulled open the drawer and chose a match book to play with :wacko: I gotta clean out that drawer. :dohh: It's such a change. But along with learning all sorts of new stuff she's having more tantrums and is hitting a lot when she's frustrated. She can land some rough knocks on us. Whew..... I hope this is just a phase because she's having trouble expressing herself. She's going to be a big girl, and she will be able to really do damage soon. She's almost 3ft tall already! 35 inches and 25 lbs at 18 months...... I have to get a hold on this hitting stuff or she could floor a therapist soon :wacko:


----------



## bumpin2012

Essie, I would almost say the hitting is very normal. My friends little girl is 19 months and has been hitting for about 2 months now. Particularly when she's frustrated, or not getting her way :)

G let me sleep until almost 10! He had better sleep tonight. I don't mind his night wakings as he usually settles pretty quick, but last night there was no settling him.


----------



## bumpin2012

Needing to vent a little.

G has been backtracking lately. In August we had an emergence of more actual sounds "da", "ma", Ba", "Na" and less shrieks and grunts. He was responding to his name, could identify his nose and his tummy, and could clap his hands when you asked him to. Early September he passed his hearing assessment.

Now he is back to the odd "da" sound, but 90% of the sounds he makes are just grunts. He doesn't respond to his name, or identify his nose/tummy. He doesn't follow a single simple command. When he does make sounds, they sound odd, almost garbled.

Ive called the ENT department at our children's hospital and they will see him for reassessment in October. I just cant get rid of the sense that there is SOMETHING wrong with his ears. No professionals seem to believe me that something is not right with him. a 16 month old doesn't choose to completely ignore his parents. They may choose to ignore the request, but there is still an indication that the request was heard.

Hubby fully believes that there is something wrong, but will not accept that it may not be his ears, but a developmental issue. The mention of a developmental pediatrician assessment has been broached, but he refuses to go down that avenue.

I feel so discouraged because I feel that something is not right, but I cant explain it well enough that his dr's will listen to me, and I feel that I am letting my son down because I cant get them to see what I see.

Sorry for the long moan, I just needed to get that off my chest.


----------



## sequeena

Trying to catch up so bear with me :haha:



essie0828 said:


> sequeena said:
> 
> 
> Hey girls sorry I've been MIA, how are we all?
> 
> I took Thomas to Thomas Land on Saturday, he loved it :) it took him a while to warm up as he was so overwhelmed but I managed to get him on a few rides and we had a lot of fun. I can't wait to take him back sometime next year!
> 
> Yesterday I had my health visitor and a social worker from the child disability team at the house. Things are really moving now and I'm feeling a bit overwhelmed myself.
> 
> They're applying for all sorts of grants - for driving lessons, sensory equipment, a carrier (ergo/mei tai etc), a nursery placement and more. My head is spinning. I am grateful for all the support and so glad T is having this opportunity but it just hammers home how much support he does need and that is hard to deal with :cry:
> 
> The social worker will be back to tell me the results of the assessment then portage will be out in a few weeks to start working with Thomas. We're still in the process of getting him DLA. We've gathered together the reports from his doctors and my HV has written a letter of support. The social worker is also going to write one. I pray we get it. It would enhance Thomas' life so much.
> 
> I am just very emotional at the moment :cry: everything seems so much more real now and it's so hard to swallow.
> 
> 
> You poor dear. :hugs: It's harder when your DH is not on the same page as you. :nope:
> DH and I had a stage like that, it lasted several months to. Ughh. Miserable times. :growlmad: I knew DD was different. I knew she had a neurological problem. But No One else in the family or her Dr.s would admit it yet. Even DH. It was very frustrating. He will see eventually but he's right to. T's gonna be just fine with help ;) I'm sure he will be. They will help him communicate. They will help him adjust. They will show him how to help himself. All the therapies and aids this child disability team will help you access will help you guys loads. It's sad but really good to :hugs: he's an amazing lil guy!Click to expand...

Thanks hun. Sean is getting better with T's disability but he's still stuck on the 'he's fine' mindset. He does say about getting him sensory stuff/DLA etc so he's getting there.



essie0828 said:


> Omg dito on the difficult child. Hayley just screamed and swatted at every nurse and dr today. All they did was gently touch her head. Then cranky all day. Trying to swat the dog, the cat, me.....ugh.... im hid in the bathroom while dh feeds her grapes and watches cartoons.

T kept randomly dropping to the floor whilst we were out today. Embarrassing but I just leave him to get on with it. Ugh can't wait for this phase to be over!



essie0828 said:


> I get a little upset that DD can't interact with other little kids but for other reasons. They just can't sit still and she can't move fast enough to follow :( Hopefully the braces her new pt is ordering will help with that. :happydance: Bless them. They have really did their homework to help us for free. Its great.

Isn't it so sad when they can't/won't interact :cry: it hits me more when he tries and other kids want nothing to do with him :cry:



Peanut78 said:


> Big hugs Sequeena :hugs::hugs::hugs: It's a process for sure, I still find I am on an emotional roller coaster with it all. I'll be fine for weeks and then have a week where I feel really down about it all. As Essie says, it also took my OH a while to really accept the extent of T's issues as well.
> 
> Tiff, that is wonderful you are feeling more reassured about school :thumbup:
> 
> Happy due date birthday Alex!
> 
> This week is a downer for me. I had a meeting with the SEN department and T's teacher yesterday. The meeting actually went well, but all morning I just had that sinking feeling of why does the need for this meeting even have to exist :cry: Why can't we just be one of those families that doesn't have to deal with SEN?
> 
> I was a bit irritated with the guy from SEN. I made it very clear that I don't want T to have a shadow teacher. We have been consistently advised this from his therapists and nursery teachers over the years, as he does not have behavioral issues and he actually benefits more from being pushed to get on with doing things himself. Anyway twice the SEN guy tried to indicate that T has behavioral issues based on what I was saying (basically so they can push a shadow teacher on us which they financially benefit from and makes the teachers life easier as she doesn't need to focus on T as well). Once it was because he's had a few accidents at school this last week- for which I quickly said there were numerous children who were having more accidents than him in the class - and how is that a behavioral issue? Secondly, when I was trying to tell them that I am pretty stern with T that there is no opting out even when something is difficult/ boring etc. - so I told them that at home if he is refusing to follow the rules he has the option to sit in the naughty corner or do as he is asked. The SEN guy jumped on this saying "that's interesting how often are you needing to do this?" - again trying to imply that T has a behavioral issue :growlmad::dohh: What because he throws a wobbly or doesn't want to finish his dinner sometimes, just like all children do?!?!? This makes me so irate as it couldn't be further from the truth - T is such a well balanced, happy, emotionally intuitive and generally extremely compliant child - please don't add problems that don't exist to all the issues we are already facing. If anything it's his little brother who doesn't have any developmental issues who acts up and spends a lot of time in the naughty corner! His teacher agreed with me that he doesn't have any behavioral issues.
> 
> Anyway in the end he will not have a shadow teacher, he will receive ST at school :thumbup: and he will be part of a group that has sessions which work specifically on motor skills :thumbup: I have to have another meeting with the SEN guy, T's teacher and his OTs/ ST in 6 weeks time to see if there is anymore support we can tailor for T (great now I can have a lump in my stomach for the next 6 weeks :dohh:). I wouldn't mind if T had extra learning support for certain sessions that are especially challenging for him such as hand-writing, I just don't want someone helping him specifically with everything consistently all day.
> 
> Ok, sorry that was long...

Well done for sticking to your guns hun. You know your boy best!! Try not to worry too much, the 6 weeks will fly by and whatever happens happens. Us mums just pick ourselves up, dust ourselves off and keep going.



bumpin2012 said:


> that sounds stressful, peanut @[email protected]
> 
> it's 4am. Have just managed to get a difficult child to sleep. and I have to be up in an hour for work. needless to say, I'm using a sick day.

Oh bless, how are you now? Did you manage any sleep?



essie0828 said:


> Peanut I understand why you don't want T to have a shadow teacher. Especially if his regular teacher agrees that he doesn't have behavior issues. Wtg momma for standing up to them :happydance: You know him better and know what benefits him more. My DD is starting to show us that she responds better to a bit of a challenge as well. I have to admit though, I'm a bit of a pushover when it comes to her. Her new PT is a tough cookie though and DD loves her! She will be so much more patient with Miss Margret and she will work so hard for her. I think I need to get a little tougher :haha:
> 
> Bumpin my DD isn't sleeping well tonight either. Good idea on taking a sick day hun. You need one.

Did Hayley sleep?



essie0828 said:


> Well ladies I have to brag on DD some. She's doing all kinds of new stuff, and I'm really proud of her and hopeful that her cognitive abilities will improve with time. She's starting to copy lots of our behavior, standing on her own for up to a minute (heels down!), and babbling all the time. :haha: She's figuring out the cabinet doors and I saw her celebrate to herself by clapping her hands when she got into a junk drawer I thought she couldn't open. Sneaky little girl. She originally rolled her ball in the kitchen and followed it in there...well when we heard her snooping around we snuck around the fridge and watched her without her seeing us. Up she stood and pulled open the drawer and chose a match book to play with :wacko: I gotta clean out that drawer. :dohh: It's such a change. But along with learning all sorts of new stuff she's having more tantrums and is hitting a lot when she's frustrated. She can land some rough knocks on us. Whew..... I hope this is just a phase because she's having trouble expressing herself. She's going to be a big girl, and she will be able to really do damage soon. She's almost 3ft tall already! 35 inches and 25 lbs at 18 months...... I have to get a hold on this hitting stuff or she could floor a therapist soon :wacko:

Oh I'm so pleased, what a clever girl!! :D LOL T is about her height and 26lbs and he has had me over several times :rofl:



bumpin2012 said:


> Essie, I would almost say the hitting is very normal. My friends little girl is 19 months and has been hitting for about 2 months now. Particularly when she's frustrated, or not getting her way :)
> 
> G let me sleep until almost 10! He had better sleep tonight. I don't mind his night wakings as he usually settles pretty quick, but last night there was no settling him.

Uh oh I hate it when they sleep late it always means a bad night... but I always have a bad night anyway :dohh:



bumpin2012 said:


> Needing to vent a little.
> 
> G has been backtracking lately. In August we had an emergence of more actual sounds "da", "ma", Ba", "Na" and less shrieks and grunts. He was responding to his name, could identify his nose and his tummy, and could clap his hands when you asked him to. Early September he passed his hearing assessment.
> 
> Now he is back to the odd "da" sound, but 90% of the sounds he makes are just grunts. He doesn't respond to his name, or identify his nose/tummy. He doesn't follow a single simple command. When he does make sounds, they sound odd, almost garbled.
> 
> Ive called the ENT department at our children's hospital and they will see him for reassessment in October. I just cant get rid of the sense that there is SOMETHING wrong with his ears. No professionals seem to believe me that something is not right with him. a 16 month old doesn't choose to completely ignore his parents. They may choose to ignore the request, but there is still an indication that the request was heard.
> 
> Hubby fully believes that there is something wrong, but will not accept that it may not be his ears, but a developmental issue. The mention of a developmental pediatrician assessment has been broached, but he refuses to go down that avenue.
> 
> I feel so discouraged because I feel that something is not right, but I cant explain it well enough that his dr's will listen to me, and I feel that I am letting my son down because I cant get them to see what I see.
> 
> Sorry for the long moan, I just needed to get that off my chest.

:hugs: hope they listen to you. It's hard when you have that gut instinct and no-one will listen. Thomas has only just started hiya again after losing all his speech!

I am feeling much more positive today girls. It's been a good day! When I got up Thomas' new slippers had been delivered along with a support letter from the social worker :happydance: and even better when I checked my emails I realised I've won a competition. I've won a HTC Windows Phone!! :D


----------



## essie0828

Sequeena you lucky girl. Yay for winning stuff! My DH had an HTC Windows phone and loved it, I think you will be pleased. Hayley didn't sleep hardly any last night :wacko: Poor kid woke up with a low fever and stuffy nose and has been so super grumpy. I guess being around new people she has caught a bug. Dh is off work and being really helpful though so I got to nap today :happydance: I'm glad T is starting to speak again. I hope he picks up all his old words and more :hugs: 

Bumpin I hope you don't need a developmental pediatrician :hugs: I hope he is just slowing down maybe because he feels a little under the weather. Hope you guys get some answers soon.


----------



## essie0828

Well here's to another night of cranky, whining, teething, non-sleeping toddler with a cold. Think I will make some tea and just give up on the idea of sleep. Poor kiddo isn't having fun either :nope:


----------



## Peanut78

Bumpin, is it possible that he is having a developmental spurt in other areas? My T has regularly mastered a new sound or movement etc, then suddenly in goes only to crop up again a couple of weeks later - it's usually always associated with learning some other new skill, or focusing on perfecting a very specific skill at the expense of others. I've never experienced them not coming back, although I have always felt worried during those times. As Essie mentions, maybe he is just a little under the weather :shrug:

I know you said he doesn't necessarily respond to you and your hubby, but does he respond to noise in general?

I am much, much better today. I totally had one of those moment, as Sequeena put it - what will be will be - we'll just have to deal with it and get on with it. 

Essie, hope you all manage to get some sleep and that LO feels better :hugs:


----------



## bumpin2012

Peanut, I haven't noticed anything new. Maybe he is just not feeling well, but he seems to be acting fine. He slept fairly well last night, but Im worried. I've contacted our early intervention coordinator to see what her thoughts are. My MIL has hinted that she thinks he may be autistic, but I don't think that is it. He tries to initiate play with our dogs, and he has back and forth copying of gestures with the little girl I babysit. He also initiates hugs. 

I think my hormones are overtaking my brain. Im so tired of not knowing what to do.

Essie, ugh. hopefully its a short lived bug. Hope you guys get some sleep soon!


----------



## essie0828

Thanks peanut :hugs: 

Bumpin im kinda curious about Gabe to. So he will completely ignore you and your DH, consistently? Even if you have something he wants? Does he ignore everyone? If you get a chance explain some more of his behavior that alarms you. There's a chance someone will recognize those behaviors and say hey my kid did that and............ I love these forums for that. I've happened across lots of good advice that way. Maybe look into trying to get him into speech therapy, some places are self referred. You just call and say I'm worried about my son not speaking... I don't know anything about your heatlh system but Speech Therapists (a good one) can spot all sorts of developmental problems. He's still young and you're likely to hear that but I'm sure a good speech therapist would tell you if they were concerned about ASD or anything as a cause. They can't diagnose, I don't think but can definitely point you in a direction. Hayleys ST was amazing, I told her I was concerned about ASD in Hayley because it can be an associated disorder. She immediately said this child doesn't have ASD and this is why....... She was very very knowledgeable about any disorder that impacts speech and communication, even the very rare ones. It's very much just an hour of playtime to, I think it's fun :haha:


----------



## essie0828

Hayley is a snot machine! Goodness it's everywhere. She barely slept again but seems to be in good spirits, got her in a steamy bath and just letting everything drain :haha: I didn't know someone so little could produce this much mucus!


----------



## Peanut78

Poor Hayley, hope she feels better soon :hugs:

Bumpin, I wouldn't always notice that his development would be "focusing" on another area - in fact during those times he would sometimes seem overall a bit worse - poor balance, not being his clear on his sounds etc. Often seemed quite tired as well. But then all of a sudden he would come out of it for example with overall improved gross motor control and the usual clarity in his sounds. Other times it would be obvious he was focusing on a certain area. I guess my point is I couldn't always tell until after. 

I realize and so understand your husband's reluctance to see the developmental paed - my husband was exactly the same, but it may give you some answers and solutions for addressing them, may also rule out some of your fears. I also like Essie's suggestion of trying to get some feedback from a therapist as well. We have actually found that they are in some ways better at identifying and understanding developmental issues. 

It's hard dealing with the worry and anxiety at the best times - but even harder when you're also pregnant! :hugs::hugs::hugs:

:hugs::hugs::hugs:


----------



## bumpin2012

thanks ladies.

Essie, He doesn't ignore our presence, just when we say his name, he doesn't look at us. If he getting into something I don't want him in, and I call his name, he just keeps on going, no matter the volume/tone used. This is consistent. With M (the little girl I babysit who is 19 months old, and I've been watching her since 12 months) when she is about to get into something and we say her name she looks at us immediately. If she chooses to ignore the request, she watches for your reaction the whole time she is "disobeying" 
If we are eating something, or have something he wants, he has no problem crawling up to us and tries to get it from us. He is quite the food mooch. All of my concerns are really centered on his speech and communication. I've done a few of the ASQ forms, and its the major area that his progression has been minimal to non existent. Everywhere else, he is "behind" but has stayed consistently about 3 months behind, which I don't think is a big deal.


I really don't think he is autistic, but im really not an expert. (or anywhere close!) Our EI Coordinator has told me she will make a referral to the autism team if I want it, but I am thinking a dev. ped. would better serve him. Here the wait list for Speech is about 9 months. I had him put on the list at 11 months, so it will likely be a few more months before he is seen.


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## essie0828

Omg that is an unreasonable wait! 9 mos for speech! When Hayley is getting into something she shouldn't have and I call her name she moves faster to get whatever :haha: I thought forever she was ignoring us but nope, just using the time it takes mom to get to her to do whatever it is she wants. Lol. Mabey Gabe is ignoring you so he can get on with the fun stuff :haha: If he likes food use that to get him talking or signing. The signs for "more" and "eat" may particularly interest him.


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## essie0828

Hi :hi: y'all! 

Hope everyone had a good weekend:)


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## sequeena

Hiya, bad weekend here. T slept barely any so we're trying to get him some melatonin to help him sleep.


----------



## sun

bumpin - Your son sounds like mine, except way younger LOL :haha: I actually thought your LO was a year older than he is this entire time - I didn't realize he was so young! What is he under special consultants for if you don't mind me asking? My son responds to his name now but it's really hard to get his attention - often I have to touch his face. And if there are distractions (TV, etc) then there's no chance he'll notice me calling. His hearing is perfect though. Whereabouts are you in Canada? We went through speech super early (18mo!) because he was unable to make sounds with his mouth. It is getting better though and now he can make 75% of sounds at almost 4.


----------



## bumpin2012

Sun - He's younger than most in the system because his mother is a nut! :haha: I noticed when he was really young that he wasn't quite on par with his peers, and contacted our early intervention center for some information. He was 10 months when we were first seen. At that time it was suggested that we put ourselves o the list for both hearing and speech so that if we felt that it was needed when they got to us, then we wouldn't have to wait. At this point all we are being seen for is hearing/speech, but it has been suggested that we see a developmental pediatrician, and that we been put on the list for an autism assessment, but neither have been done yet. We are going for ANOTHER hearing assessment at the end of next week. If he passes, then we may be going down the autism route. 

We are in Halifax, so the wait times are farily long, but because we were on them so early, we will still be seen at a young age. Our EI coordinator is going to call them and see where we are on the list, and see if we can get bumped up a bit.


----------



## essie0828

sequeena said:


> Hiya, bad weekend here. T slept barely any so we're trying to get him some melatonin to help him sleep.

Oh no. You poor things :hugs: I have heard that melatonin drops and exposure to early sunlight or a uv lamp can help him to sleep more consistently. My sources are an old psychology professor, Dr. Oz and Google :rofl: So mabey not the much help but anything that's not harmful is worth a shot. I'm lucky. Hayley sleeps well for the most part but just won't self settle. Hope he rests well for you tonight and isn't a grumpy T all day :hugs:


----------



## essie0828

Lol bumpin :haha: better to be a nut than not ;). How's little Gabe doing today? Is he still standing and cruising, and attempting to walk? I bet he's honing that last muscle control in order to take off. ;) He's to busy trying to get moving to talk about it :haha: Your on the right track mama. Your being proactive and concerned. That little man will be just fine :hugs:


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## essie0828

Hayley is having a tough day today. She is tight and didn't want to do much in pt. She's been a little "off" with this cold, her tone is high in her legs and lower trunk is stiff :cry: These days make me worry for the future.


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## Peanut78

Sun - congrats on the pregnancy! :happydance:

Bumpin, great you started looking into things so early. I also knew from quite early on something wasn't quite right and by 20 months or so we had reached a diagnosis which has helped hugely in getting T the support he needs. Is there a particular reason they suspect autism?

Essie - I have always found with T that if he is not feeling well or very tired his physical abilities are definitely affected - for us it manifests in especially poor balance and coordination. :hugs:

Sequeena - as you already know - big hugs :hugs:


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## bumpin2012

thanks ladies. I don't mind being a bit nutty ( or a lot) if it means he gets the help he needs. He's still cruising along the furniture, but had no inclination to go anywhere on his own. Im sure on that skull he'll get there eventually, I figure around 18/19 months. he's consistently 3/4 months behind the average.

peanut, an autism assessment had been suggested, I think, to rule it out. he has a few of the minor flags, but Idon't think that is what is going on. We will see what the speech therapist thinks when we see them. I'm also making an appointment with our GP to get him on the wait list for a developmental pediatrician. Hopefully that workload isn't too long.

Essie and sequeena, sorry you guys are having some rough days. Hopefully you get a good day soon. maybe the change in weather is to blame?


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## sequeena

Poor Hayley hope she's feeling better soon! :hugs:

Today I bought lavender oil for his bath and bed clothes and vervain to put in his drinks. Hopefully aromatherapy works.


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## essie0828

Sequeena I hope the lavender and vervain works. :hugs:


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## sun

bumpin2012 said:


> Sun - He's younger than most in the system because his mother is a nut! :haha: I noticed when he was really young that he wasn't quite on par with his peers, and contacted our early intervention center for some information. He was 10 months when we were first seen. At that time it was suggested that we put ourselves o the list for both hearing and speech so that if we felt that it was needed when they got to us, then we wouldn't have to wait. At this point all we are being seen for is hearing/speech, but it has been suggested that we see a developmental pediatrician, and that we been put on the list for an autism assessment, but neither have been done yet. We are going for ANOTHER hearing assessment at the end of next week. If he passes, then we may be going down the autism route.
> 
> We are in Halifax, so the wait times are farily long, but because we were on them so early, we will still be seen at a young age. Our EI coordinator is going to call them and see where we are on the list, and see if we can get bumped up a bit.

What skills is he delayed with and what are you concerned about? It's really hard to diagnose autism that early unless it is severe and very obvious - most 16mo kids display at least some of the classic signs. My son has been flagged for it for years, but they develop so quickly and differently that it's hard to tell. My son has hypotonia and hypermobility, so was late with his gross motor skill milestones. He started rolling, crawling and getting himself into sitting at around 13 months old. But he did so well after that and walked within the "normal" range (just before 18mo) - even though he couldn't walk on uneven surfaces until around 2. And he started talking at around 2.5 and now is doing so well. He started school and is learning so much. I'm just so proud of him. At a year when he couldn't move from lying on his back I was terrified about his future - but omg I wish I could have had a little window into the future to see him running for the school bus with his backpack and lunch box :cloud9:


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## sun

sequeena said:


> Poor Hayley hope she's feeling better soon! :hugs:
> 
> Today I bought lavender oil for his bath and bed clothes and vervain to put in his drinks. Hopefully aromatherapy works.

Did the melatonin help at all? I know some mums who swear by it. xo


----------



## AP

Where can you get melatonin? Who do you have to ask?

Pish day here? DH is on the Hanen More Than Words course and they come round and video Alex. Today went completely pear shaped apparantly, she had a meltdown and tantrum session, kicked off because she wanted to hide away with her ipad and ended up being sick as per. :(

Facebook ssetting me off as well - everyone seems to be on the "look at my advanced toddler" train. I mean, piss off. :cry: Why do typical kids get the head start :(


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## sequeena

No we haven't got the melatonin yet it can't be bought over the counter in the UK. Only T's paediayrician can prescribe it x


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## essie0828

Hayley got fitted for her AFO's today :happydance: They are a new 2 stage design that she can wear crawling and walking. Its kind of like a tiny boot that snaps inside another taller boot. I'm really hopeful these will help her walk. We will see in 2 to 4 weeks if they help.;) 

Sequeena how did aromatherapy work?? My kiddo has lavender and vanilla lotion that seems to help calm her. But I am usually giving her a massage after a warm bath when I use it so who knows if its the smells or the massage :haha: 

Hi ladies :hi: 

AP sorry you guys had an off day :hugs: hope tomorrow is better.


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## essie0828

Melatonin drops are sold over the counter here. But DD sleeps well if she's not sick so I haven't used them.


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## sequeena

Sorry for the crap day AP :(

Go Hayley, hope those boots help her!! :dance:

I only started the aromatherapy yesterday so haven't seen a difference yet. T is staying the night at my cousin's to give me and Sean a break so I've given her the vervain and told her what to do. FX we'll see a change in the next few weeks.


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## essie0828

sequeena said:


> Sorry for the crap day AP :(
> 
> Go Hayley, hope those boots help her!! :dance:
> 
> I only started the aromatherapy yesterday so haven't seen a difference yet. T is staying the night at my cousin's to give me and Sean a break so I've given her the vervain and told her what to do. FX we'll see a change in the next few weeks.

Glad you are getting a break dear. Hope you guys have a good night:thumbup:


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## bumpin2012

ap: sorry to hear your having a rough day. it's hard to see how well every one else's kids seem to be doing, especially when it's an extra rough day

sequeena, glad you guys are getting a bit of a break. hopefully you get some sleep!

Essie, hope the boots help!

peanut, Gabriel is delayed by 3-4 months in every area, but has progressed staying within 4 months of his peers. except with communication. he's still at the level of a 6 month old. he doesn't have the major flags for autism, but he doesn't babble, use gestures, or try to show us anything. he doesn't interact the same as other kids. Our EI coordinator suggested it, not because she thinks he's autistic, but he may fall on the spectrum somewhere. 


ugh. morning sickness seems to be coming back in full force. thankful for the 10 day break, but man, this feels awful... only a 4 more weeks until 2nd trimester. hoping for an easy pregnancy this time around...


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## sequeena

Thomas was sick twice at my cousin's so he's home. He's been a terror since, there's nothing wrong with him!! :growlmad:


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## essie0828

Bumpin I hope the pregnancy hormones ease up on you. I was sick almost my whole pregnancy with DD. No Fun. :nope: :hugs: for the lil man

Oh goodness sequeena. T just wasn't going to be away from mama tonight huh. :hugs: I hope he calms for you and you can just chill.


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## lindblum

Hi everyone, I hope you don't mind me dropping in. I was just looking around for anyone with older (school?) kids with delays. My 5 year old(6 next month) is speech delayed. She finally had a proper assessment in Feb 2013 and scored very low falling in the 8th percentile for her age group. The average range is 16-85% so they concluded she is severely delayed.

She is in year one now and they are going to start spelling tests next week and i'm feeling nervous about it. She is doing pretty good with reading and last week she was reader of the week in her class. It was great to see an achievement like that as we have put in a lot of work at home into reading. I don't know where she stands with her age group now and I'm happier that way. With the spellings, if she does badly I'm going to feel like we've gone back to square one. We had put so much work into getting her to talk and was over the moon when she was speaking in sentences at last and then to get that report was like bit of a knock back, I had hoped it wasn't that bad.

sorry for the long moan. hope everyone else is having a good day x


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## sequeena

Well, he's woken up today and seems fine but he's quieter than usual and paler. He's eating/playing so maybe he just feels a bit off. I won't give him any vervain today but I doubt that is what made him sick as it's used regularly to calm children. I'm disappointed but he comes first and I can have a night off another time.

Hi lindblum, we don't mind at all. Would you like to have something put on the first page?

My 4 year old cousin has speech delay too. He can talk but you can barely understand him so he goes to speech therapy. So sorry to hear your DD is severely speech delayed :( is there a reason why it's only just been picked up or perhaps is just one of those things? She'll come on I'm sure with some help and wow reader of the class!! That's awesome, well done her! I'm sure she'll be ok in school, she might not do as well right now but she will definitely catch up to her peers.


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## lindblum

Yes, I don't mind. I had asked for help with her speech since she was 3 but it's just taken a long time to get any help. She's not actually had any professional help with speech, just assessments. it's very frustrating. She didn't start speaking in sentences until well after she turned 4. I can understand most of what she says now though. She's always been behind but she is catching up as she gets older, from what i can see.

I'm sorry your child is feeling poorly x


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## annanouska

:flower: hi everyone. I've been reading along about all the bumps and babies, toddlers and children. Not to forget their long suffering parents. 

I've not posted as I think I'm in a bit of denial and frustrated. We are still at the stage of " he's ok just taking a bit longer" but I keep nightlong away there is "something". 

Things he can do at 15 ( next week) months: 
Climb the stairs, get back down them ( tho he's stopped doing this??), crawl, cruise, hiya and dadda and waves. He can swim very well. Sort of tries a shape sorter, puts things in things- like a toy in a box, free flowing sippy cup finger food and tries to use cutlery. 

His interaction with other children is not good, like t he gets soooo over excited he bites or grabs at them. He is on review for biting at nursery. He has begun mega tantrums. 

I'm really working hard playing with him praising good behaviours and ignore bites or strops. He seems very high needs constsntly needing something different to work on. 

Xxxx


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## sequeena

Hi annanoushka :hugs: FX he is just high needs and will soon go through a developmental leap :thumbup: How did your LO get down the stairs, bum shuffling? Thomas can't do it yet, I've been trying with him but he just can't.


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## essie0828

Anna, your LO is doing more than DD does at 19 mos. :hugs: 

Ughhh. Crap day in speech therapy today. DD didn't want to do anything but cry at the therapist and run to her dad. Lol. It was so bad that dad has been banished from the next session:haha: He's horrible about giving her whatever she wants without making her work for it :dohh: He's off work, thanks government shutdown :nope:, and is spoiling her rotten. She was also just grumpy today, still has a cold and must have been hungry. When we left she ate a huge lunch like she was starving, poor thing. Momma is the enemy today to :( she has cried at me a bunch, and won't give me hugs. I can't figure out for the life of me why she's mad at me. Giving her medicine and suctioning her nose mabey....


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## sequeena

Poor Hayley! Thomas has been like that with me today, kids are so fickle.

Hope her next session goes better!!


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## essie0828

Lol. Yes they are. Thanks hun. :hugs:


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## annanouska

:nope: men! My dh is the same and also gives in to things very quick. I love my son dearly but after observing and trial and error I really think u need to be "firm" with him. By that I mean, here's your dinner, oh u don't want it ok u can have fruit in an hour or two not...here's dinner, oh I don't eat it il do toast them u can have pudding with me! Also not giving in to his strops. He runs rings round you if you do. 

I've been working really hard these past few days :haha: (I make it sound such hard work) no dummy except nap and sleep, praising th good, ignoring the stops etc. he actually seems a bit better :shrug: I'm sure he is interacting a bit more with me and ha sheen waving and saying hiya to strangers. Normally he just moans for his dummy th eats it (he puts the whole thing in his mouth and chews) I can't buy bigger ones. 

He goes down stairs and gets off things backward, so from the landing he will crawl backward to the edge of the first step then reverse on to it and so on. He would get off the sofa and bed the same way but has stopped? He just sits and screams at you or tries to lunge forwards :shrug: I keep worrying he's done something tonhisnbrain by keep banging his head and he's forgotten. I know that sound s so ridiculous but I do! He's also started crawling with his head down on the floor and charging like a bull or something :wacko: I'm hoping its just a phase. 

I bet they would all get on so well. We saw a nice lad with Down's syndrome he was 8 but they actually played together :hugs: I think the downs boy was happy my lo enjoyed him being gentle and showering him with attention and my lo liked the fact he didn't run off with the occasional shove! Was cute x


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## sun

annanouska said:


> :flower: hi everyone. I've been reading along about all the bumps and babies, toddlers and children. Not to forget their long suffering parents.
> 
> I've not posted as I think I'm in a bit of denial and frustrated. We are still at the stage of " he's ok just taking a bit longer" but I keep nightlong away there is "something".
> 
> Things he can do at 15 ( next week) months:
> Climb the stairs, get back down them ( tho he's stopped doing this??), crawl, cruise, hiya and dadda and waves. He can swim very well. Sort of tries a shape sorter, puts things in things- like a toy in a box, free flowing sippy cup finger food and tries to use cutlery.
> 
> His interaction with other children is not good, like t he gets soooo over excited he bites or grabs at them. He is on review for biting at nursery. He has begun mega tantrums.
> 
> I'm really working hard playing with him praising good behaviours and ignore bites or strops. He seems very high needs constsntly needing something different to work on.
> 
> Xxxx

What areas are you concerned about specifically? Because your LO seems pretty typical for a 15mo. He is using gestures (even starting to talk!), good gross motor (swimming, cruising, stairs), and plays with toys/eats with cutlery. Some of these are ahead of other kids his own age (my typically developing daughter started talking at 20mo). The grabbing and biting is definitely an age thing. Are you comparing him with friends kids who are doing more? Because all kiddos are very different in their development - just because they hit a "milestone" a month late doesn't mean they're delayed at all. That said, if there's something you really feel is wrong I would definitely get it checked - just based on what you wrote i can't even see a single "red flag" for something. Does he play with you or include you in his playing?


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## essie0828

Anna your little man sounds like a bruiser! :haha: A rough, tough lil boy ;) The crawling with his head down sounds pretty normal. My lil cousin does this and he's 11 weeks younger than Hayley. Hayley tries to do this to but the poor dear doesn't have the balance. :hugs: Sorry you are worried about him dear. I hope all is well. 

No therapy today! :happydance: We were rescheduled to start next week because the insurance papers hadn't come in yet. I really didn't want to go today, I feel horrible, I think I have a cold or something. And super pms! :haha: A lady was rude to me on the phone and it just got to me so bad. Trivial thing had me going mad. Ugh. Better to spend the day feeding ducks and fish with my family in the park. Schools in so No one will be there. Nice :)


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## AP

I caught this from Alex on camera last night - shes trying to say "row row row" :cloud9:
https://www.facebook.com/photo.php?v=10151864565294318&l=4642676176673133162


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## sequeena

Oh bless her and doing the actions too! Just sent you a request I'm Sarah xx

Nothing to report here. T is his usual non sleeping, violent self.


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## annanouska

Tbh it's the violence that has me worried most. He's better at home now but can't cope with other children often . Today he was with the one friend he has ( the others aren't allowedvtomplay due to violence) got all excited crawled over and bit her :cry: I managed to intervene :thumbup: he does like other children but gets so hyped or something and just bits or pushes. We can't go anywhere with other children, they are monitoring him with the senco at nursery and near enough isolate him :cry:


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## bumpin2012

sorry sequeena. I so hope you and dh are able to get a break one night.

annanouska: it sounds frustrating. I hope this is a phase that he will grow out of. boys can be very rough, have you had him assessed by a professional, like your gp? They may be able to get you set up with a psychological arrangement ( not because I think he's crazy) and they might be able to give you some tools in helping him. Its tough to have concerns and no answers.


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## sun

AtomicPink said:


> I caught this from Alex on camera last night - shes trying to say "row row row" :cloud9:
> https://www.facebook.com/photo.php?v=10151864565294318&l=4642676176673133162

Oh that's fantastic!! xo :cloud9:


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## essie0828

Awww I can't get the link to work :( But well done Alex :happydance:


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## Peanut78

I'm sitting in the airport with really sporadic internet access - but Anna just wanted to quickly say there was a thread on dealing with violence here on the Special Needs board not so long ago - have a look for it. 

Sequeena, hugs on the sleep :hugs:

AP, can't wait to view the video! :thumbup:


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## annanouska

Thank you peanut I've had a look and picked up some good advice :thumbup: 

It's is going to sound very in pc but.... Lo seriously only seems to get along with children with additional needs. Today we met a deaf boy with developmental delays he was 6 and he and lo did great together. I think it's because some children with additional needs are not phased by pain so if lo grabs ( not to hurt just grabs he's moved off) it doesn't seem to frighten them. 

Sequeena, a soft play cater near us is running autism nights. May be Roth seeg. If one near you does it for T. The lady said non autistic children who have 'autistic like' needs are also welcome, basically its to keep the hyper usual kiddos out but if your lo has some markers or displays similar behaviour traits its ok to go. Thought was nice of them to ru. It . 

How is everyone? 

X


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## essie0828

Peanut I read that dealing with violence thread to! Useful info for us as well. Thanks :) 

Anna my DD isn't put off by pain at all as well. It's a constant struggle to keep her from getting scuffed up. She never cries at pain. She burned her right thumb pretty bad at my moms on the stove there and never indicated pain at all. I didn't even see it till we got home hours later! She never favored it or cried or anything. I felt terrible when I did find it :(. Her brain just doesn't process pain like ours. Personally I would have whined for days :haha: And like your little one she can get grabby with other kids and not realize that pinch hurts. It's kinda frustrating. DD usually ends up playing with adults only :(


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## essie0828

Off topic but I made cottage pie for the first time yesterday. It was really good! DH and DD really put it away :happydance:


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## sequeena

Thomas doesn't feel pain often either. He has scratches, cuts, bruises etc and never whinges. Sometimes though he'll go mental over something small, like when he falls over but doesn't break the skin. Madness :wacko:

Woo for cottage pie :dance: a proper british dish. Mmmm love it :)

T had a MASSIVE meltdown going to and from the shop. It's quiet where I live so him screaming and screaming in the front garden whilst I was opening the front door was mortifying.


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## annanouska

:hugs: I don't think Marcus has a meltdown as bad as others but it seems it to me sometimes I just hate doing anything. 

Have u tried him with now and then cards etc to prepare him. I know he's not been diagnosed with ASD but you said a few flags for him. We used these a lot in the special needs school i worked in. I don't know why I didn't think of it before but I've made some now for lo and one flashcard more as his speech is poor and struggles with frustration of it. 

He is still very young I kno but I think he is quite *bright* in one ways and can't express it o it helps. His delays in walking contribute s lot I think xxx


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## sequeena

We have flash cards but unfortunately Thomas only recognises pictures of cats, dogs, cars and trains. He doesn't understand what shop, park etc. He does know that if I say where are your shoes that it means we're going out but that's it. The understanding will come in time so I'm sure we'll get there.

As for the disability group we have a SNAC where we can take disabled children it's the only one in South Wales. There's also a soft play that does special needs days. Problem is T doesn't sleep so we can't make it to their morning sessions :( hopefully once we get a handle on the sleep we can do more together.


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## sun

annanouska said:


> :hugs: I don't think Marcus has a meltdown as bad as others but it seems it to me sometimes I just hate doing anything.
> 
> Have u tried him with now and then cards etc to prepare him. I know he's not been diagnosed with ASD but you said a few flags for him. We used these a lot in the special needs school i worked in. I don't know why I didn't think of it before but I've made some now for lo and one flashcard more as his speech is poor and struggles with frustration of it.
> 
> He is still very young I kno but I think he is quite *bright* in one ways and can't express it o it helps. His delays in walking contribute s lot I think xxx

Is he cruising/crawling yet? If your LO isn't even 15mo he's not delayed with walking at all yet - here 18+ months walking is considered delayed. Loads of children I know started walking between 14-16 months and are totally typical in their development. And with flashcards - I don't think any non-delayed kiddos I know would have been able to do flashcards so young. Have you tried signing with him? We were just at a birthday party and lots of the kids under 18mo did most of their communication via signing. It is a great way to bridge that gap until they start talking. Lots of the time they want to communicate, but can't yet so it really adds to their frustration and tantrums/acting out. Before my daughter started talking at 20mo she had 10 signs she used regularly and it really helped us. Now at 23mo, she has about 100 words.


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## sun

sequeena said:


> We have flash cards but unfortunately Thomas only recognises pictures of cats, dogs, cars and trains. He doesn't understand what shop, park etc. He does know that if I say where are your shoes that it means we're going out but that's it. The understanding will come in time so I'm sure we'll get there.
> 
> As for the disability group we have a SNAC where we can take disabled children it's the only one in South Wales. There's also a soft play that does special needs days. Problem is T doesn't sleep so we can't make it to their morning sessions :( hopefully once we get a handle on the sleep we can do more together.

I did flash cards with my son and I started by making them myself with photos and cutouts (like cut out the picture he recognized on the cereal box or a pic of his favourite car because he didn't associate a pic of a generic car with his own toy). I found that pics of things we actually owned or places around us were way more effective than stock pics on cards you buy. I used them in addition to signing. Also my son didn't always associate certain images with certain things the way I did. His favourite museum is the aviation museum and I would try and show a pic of the museum or the sign or big planes, but what really resonated was a pic of the little toy ride-on planes they have there. That really signified the museum and made the association for him. Same with parks - the park no, but a pic of his toy car on the slide, yes. A little trial and error, but made a big difference. Hugs! xo


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## annanouska

I have a book on signing because the groups are so expensive but nursery won't use sign so wondered how he would do. 

He was flagged as delayed because at 13 months he couldn't physically put his feet on the floor, if you tried to get him up to stand he couldn't/wouldn't he would cry and lift his feet or go to his knees instantly. He randomly then started pulling to stand and on the same day cruising down tHe sofa which was so odd as he couldn't even put his feet on the floor :shrug: . Wen he stood tho his feet wouldn't be almost pointing backwards and bent in funny. This was due to his hyper mobility in his knees and ankles. His physio has helped a lot along with his swimming and in 2 months he's standing a lot more "normal". He may still need special boots when he walks but we can't check that until he does :hugs: 

Hope everyone is ok :flower: 

X


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## essie0828

Sun that's fantastic thinking to take pics of things your lo actually has. And the heart of the museum being the kiddie rides in his perspective :cloud9: Ahhh kids are so sweet. Bless him. :hugs: I'm going to do this with DD. 

Sequeena :hugs: for you and little T. It has to be a strain when he won't sleep. How much does he actually sleep in a 24 hr period? On a typical day? And a bad day? Here an occupational therapist will help with sleep issues. I didn't know that until DDs first session. He said some kids need deep pressure and other sensory processing aids to sleep. There were weighted teddy bears, a large swing hanging from the ceiling that's supposed to be slept in, different textured surfaces to lay on........all kinds of different tools to create the perfect environment for each child. It's really awesome! Could your try for an occupational therapy referral because of Ts lack of sleep? It may help you to find that perfect storm of events that will get T sleeping. :hugs: 

Anna :hugs:


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## sun

annanouska said:


> I have a book on signing because the groups are so expensive but nursery won't use sign so wondered how he would do.
> 
> He was flagged as delayed because at 13 months he couldn't physically put his feet on the floor, if you tried to get him up to stand he couldn't/wouldn't he would cry and lift his feet or go to his knees instantly. He randomly then started pulling to stand and on the same day cruising down tHe sofa which was so odd as he couldn't even put his feet on the floor :shrug: . Wen he stood tho his feet wouldn't be almost pointing backwards and bent in funny. This was due to his hyper mobility in his knees and ankles. His physio has helped a lot along with his swimming and in 2 months he's standing a lot more "normal". He may still need special boots when he walks but we can't check that until he does :hugs:
> 
> Hope everyone is ok :flower:
> 
> X

My son also has hypermobility in his knees and ankles and took longer to walk. I've found with hypermobile kiddos that the joints stabilize with time. My son's foot used to bend right up and touch his calf, but now at 4 it doesn't and he is much more solid with his footing. Once he was walking he had a very hard time on uneven surfaces due to the hypermobility (he also has hypotonia which added to it), but again that improved and now he is doing so well. Hugs! x


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## sequeena

A weighted blanket is what I'm looking into :)

In 24 hours? If he naps he'll sleep about 7 hours that's if he does his usual pattern of 1 hour nap bed at 8 up at 9 awake until 1am and up at 8am (with waking if he's in his bed without waking if he's in ours)? If he doesn't nap then its usually 6. He does sometimes go a bit more but it's pretty horrific especially as he's only 2.

He did go only 5 hours in a 24 hour period. That was really tough. It's ehy I always say a newborn is easier for me to handle.


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## sun

Sequeena - Lots of mamas I know have had loads of success with weighted blankets! I really hope you find something that works. xo


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## sequeena

If I could keep co sleeping I would but I've really had enough. Almost 2 years of it full time is enough. I'm feeling trapped now and miss cuddling up to oh. It's impacted on our relationship and as T is so difficult I just need space. That's probably a bad thing to say but it's how I feel.


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## essie0828

sequeena said:


> A weighted blanket is what I'm looking into :)
> 
> In 24 hours? If he naps he'll sleep about 7 hours that's if he does his usual pattern of 1 hour nap bed at 8 up at 9 awake until 1am and up at 8am (with waking if he's in his bed without waking if he's in ours)? If he doesn't nap then its usually 6. He does sometimes go a bit more but it's pretty horrific especially as he's only 2.
> 
> He did go only 5 hours in a 24 hour period. That was really tough. It's ehy I always say a newborn is easier for me to handle.

Oh dear! That's definitely not a lot of sleep for a guy so little. The weighted blanket may be a good idea for us as well. DD doesn't self settle and we still co sleep.


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## essie0828

sequeena said:


> If I could keep co sleeping I would but I've really had enough. Almost 2 years of it full time is enough. I'm feeling trapped now and miss cuddling up to oh. It's impacted on our relationship and as T is so difficult I just need space. That's probably a bad thing to say but it's how I feel.

It's not bad to say. I feel the same. Sometimes mama needs a break, no shame in that at all hun. We all feel like that from time to time. :hugs:


----------



## Peanut78

essie0828 said:


> sequeena said:
> 
> 
> If I could keep co sleeping I would but I've really had enough. Almost 2 years of it full time is enough. I'm feeling trapped now and miss cuddling up to oh. It's impacted on our relationship and as T is so difficult I just need space. That's probably a bad thing to say but it's how I feel.
> 
> It's not bad to say. I feel the same. Sometimes mama needs a break, no shame in that at all hun. We all feel like that from time to time. :hugs:Click to expand...

WSS

Sequeena, you amaze me - I don't know how you have managed with the lack of sleep for so long. You are one of the toughest and best mama's I know. :thumbup:

Don't ever feel bad about needing space - I sure as heck do too! :hugs:


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## AP

sequeena said:


> If I could keep co sleeping I would but I've really had enough. Almost 2 years of it full time is enough. I'm feeling trapped now and miss cuddling up to oh. It's impacted on our relationship and as T is so difficult I just need space. That's probably a bad thing to say but it's how I feel.

It's not a bad thing to say! :hugs: Jeez me and DH havent slept in the same bed for almost 2 years , (except the odd night here and there) and our relationship was in bits. Stay strong, both of you! :hugs: You can get through this! Tori is still in our bedroom as Alex getting up every night will only wake her up, when she does this DH goes straight through and has to sleep on the floor for the rest of the night. You do what you have to do in order to function. xxx


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## essie0828

Managed to get DD to sleep in her crib most of the night :happydance: A loose diaper foiled my plans for a late morning though, she woke up at 6 soaking wet and angry.


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## sequeena

Thanks girls :)

Essie thats great that hayley slept in her bed, shame she wok early though x

I put thomas in his bed at about 1am this morning. He woke about 2 hours later and sean brought him into bed with us. I was so tired I could barely open my eyes.

Today we're picking up Thomas' new glasses :D I also need to rig ophthalmology as I misplaced his appointment letter and I need to ring his speech therapist as there are now appointments available. Not sure why I have to do all the running *grumble*

I also need to go to mothercare to get 2-3 vests (onesies). Thomas isn't ready to move on yet.


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## essie0828

We still use onesies for DD most of the time. She's a wee little flasher if we don't. :haha: 

DD did excellent in PT today :happydance: Her therapist is really excited that she will walk on her own with the AFOs. She's standing more and more on her own and catching her balance a lot better. She says "up" and stands up and will put her heels down when I ask her to. :cloud9: I'm so proud of her progress, she's coming along so well. :) 

Hope everyone is well. :hugs: Sequeena I hope you got a chance to sleep a little.


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## bumpin2012

Yay Hayley! that's fantastic

sequeena, nothing wrong with wanting alone time. hubby works 12 hours shifts and there are many days he gets home and gets a toddler ( or 2! if we have M) dumped on him, because I am touched out. you still need alone time, and time alone with hubby.


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## sequeena

Well done Hayley, she's coming on really well :)

Thanks girls. We're doing 'sleepover part 2' tonight. T is at my aunt's. Fingers crossed it goes well :)


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## essie0828

MmmmHmmm! We see your ticker sequeena :winkwink: LO gone and DH home:sex:..............are you ttc this month? :blush:


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## essie0828

I'm a bit nosey. I apologize. But wanted to wish you luck ;)


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## sequeena

:rofl: I think I may have ov'd already so if I'm right we've missed the boat :) honestly we've not dtd in months. Ts sleep has taken a toll on every aspect of our life. That ticker just tracks cycles now :( I'm not certain I'd cope anyway with him as he is and a newborn. I'd be naive thinking he'd change his habits before the birth of a baby.


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## essie0828

bumpin2012 said:


> Yay Hayley! that's fantastic
> 
> sequeena, nothing wrong with wanting alone time. hubby works 12 hours shifts and there are many days he gets home and gets a toddler ( or 2! if we have M) dumped on him, because I am touched out. you still need alone time, and time alone with hubby.

Soon enough it will 2 babies all the time :haha: congrats on 9 weeks :hugs:


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## essie0828

sequeena said:


> :rofl: I think I may have ov'd already so if I'm right we've missed the boat :) honestly we've not dtd in months. Ts sleep has taken a toll on every aspect of our life. That ticker just tracks cycles now :( I'm not certain I'd cope anyway with him as he is and a newborn. I'd be naive thinking he'd change his habits before the birth of a baby.

Your not alone there hun. Before DH was put off work we hadn't been able to dtd much at all. And hell when we had the chance it was like who the hell wants to. This month was a close call again and I have pretty much threatened his life if he gets me pregnant :haha: I'm not ready just yet either.


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## essie0828

Have you heard anything about the melatonin prescription for T? I hope you guys can find a sleep solution soon:hugs:


----------



## RachA

Hi all

Sorry I've not been around much recently. Seem to of been really busy. 
There's kind of too much to catch up with so I hope everyone is going ok. 

We (or rather pre-school) have just started the process to get a Statement for Esther. There is no guarantee that she'll get one but would rather try. We've also booked visits to 3 schools and we're taking the development officer from the education dept with us so we can find out what provision they can provide for us. 


I was also wondering if anyone here does PECs? We are kind of starting it with Esther. I'm struggling to find decent pictures though so wondered if anyone could recommend anything. I've seen various things on Amazon but they are do expensive. As this is just a trial I don't really want to spend huge amounts of money on things for them to be no use in a few weeks time.


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## moggymay

there is a seller on ebay who does them....they have a special needs child and found they couldnt get the cards they wanted unless they spent a small fortune so they started making their own and now they sell some on ebay....we looked into it a few months back, will try to find a link for you.

Bit of an update for us, he has progressed well since his last assessment and has gone from about a year behind his peers to around 6-7 months behind. They are pleased with how he is doing and we now need to work on "hard consonants" which are missing from his speech. They say he will need support at school when he starts next year, but they haven't elaborated any more so I am unsure how we make sure he will get the help they believe he will need? It is literally just speech so not sure if I am in the wrong place as our issues seem almost trivial in comparison to others (they aren't to us but I hope you understand what I mean)


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## RachA

moggymay said:


> there is a seller on ebay who does them....they have a special needs child and found they couldnt get the cards they wanted unless they spent a small fortune so they started making their own and now they sell some on ebay....we looked into it a few months back, will try to find a link for you.
> 
> Bit of an update for us, he has progressed well since his last assessment and has gone from about a year behind his peers to around 6-7 months behind. They are pleased with how he is doing and we now need to work on "hard consonants" which are missing from his speech. They say he will need support at school when he starts next year, but they haven't elaborated any more so I am unsure how we make sure he will get the help they believe he will need? It is literally just speech so not sure if I am in the wrong place as our issues seem almost trivial in comparison to others (they aren't to us but I hope you understand what I mean)

Thanks-the link would be useful if you can find it. 

Iro the help your lo may need at school-I would arrange to talk to the SENco at the school/s you are considering sending him to. They can tell you what help will be put in place for him if he does need it.


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## essie0828

What are PEC's?


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## RachA

It's Picture Exchange Communication system. You effectively use flash cards for communications but rather than just showing a card for milk the child has to build a sentance showing 'I want' and then 'milk'. The idea is that they have a book with lots if pictures and they bring the 'sentence' to you to ask for things or say things. 
For Esther it should only be a short term thing until she can talk properly (hopefully anyway). Other children may always need it.


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## moggymay

https://stores.ebay.co.uk/extra-special-friends?_trksid=p2047675.l2563


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## RachA

Thanks, that's great :)


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## sun

RachA said:


> It's Picture Exchange Communication system. You effectively use flash cards for communications but rather than just showing a card for milk the child has to build a sentance showing 'I want' and then 'milk'. The idea is that they have a book with lots if pictures and they bring the 'sentence' to you to ask for things or say things.
> For Esther it should only be a short term thing until she can talk properly (hopefully anyway). Other children may always need it.

How is Esther coming along with the speech? B's speech is coming along so well and they are thinking now that the delay is 70% a mechanical/muscle problem.


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## essie0828

RachA said:


> It's Picture Exchange Communication system. You effectively use flash cards for communications but rather than just showing a card for milk the child has to build a sentance showing 'I want' and then 'milk'. The idea is that they have a book with lots if pictures and they bring the 'sentence' to you to ask for things or say things.
> For Esther it should only be a short term thing until she can talk properly (hopefully anyway). Other children may always need it.

Oh I see! Hayley does this in speech therapy to. So far she just likes to try and eat the pics but she will choose ball, or bubbles to play with sometimes. Hope Esther is doing good :hugs:


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## essie0828

Was told today that DD was about 10 months behind in gross motor. That was a little hard to swallow especially since she's only 19 months old :(. She's making progress but I guess she has a long way to go still. One day at a time I suppose.


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## essie0828

Moggy thanks for the link. :). I had a look as well. I'm going to buy a laminating machine and start on my own set. Hayley isn't working so well with the stock pictures, I need to take pics of her things and try that way.


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## moggymay

on the "two and not talking" thread there is a link to a site you can download free pics from to make your own cards...there are others on there you have to pay for but the free ones get you a good start :)

Another thing to try, well the one thing that has helped us the most it the use of the "bag", we have a couple but the basic premise is you have a theme eg a phonetic sound or a book and the items in the bag match....Jacks favourites are "The Very Busy Spider" and "Dear Zoo" we have the animals to pull out when they appear in the book and he either signs or now says the animal and what they say, the phonetic sound is like a lucky dip whereby if they say what they get they get another go.....we have a "b" and a "c" bag at the moment b = bear, ball, bag, bubbles, book, bowl, bat, banana etc c = cup, car, kangaroo, cat, key, cap, cow, clap etc He loves doing them and we rotate them every few weeks. Not sure what our next exercises to aid him will be but they all help :)


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## moggymay

essie0828 said:


> Moggy thanks for the link. :). I had a look as well. I'm going to buy a laminating machine and start on my own set. Hayley isn't working so well with the stock pictures, I need to take pics of her things and try that way.

That is exactly how the seller on ebay started :) Hope they help:flower:


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## sun

essie0828 said:


> Was told today that DD was about 10 months behind in gross motor. That was a little hard to swallow especially since she's only 19 months old :(. She's making progress but I guess she has a long way to go still. One day at a time I suppose.

I know our LOs don't have the same issues (my son has hypotonia/hypermobility), but I found that the biggest hurdle was the initial gross motor skills. My son started rolling at 13 months (so very far behind considering his age) and then could get himself into sitting, then started slowly crawling. But I found that once he got that initial mobility then he really improved so much faster. He was the farthest behind at about 14-18mo and has been slowly catching up since. I know it may not be the same with your LO, but I have found with most kiddos at our treatment centre that the more they do, the more they can do - so often it is earlier when they are first learning to use and work the muscles that it seems like they are progressing slower. I have no idea if what I wrote makes any sense to you, but lots of hugs xoxox


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## essie0828

Moggy the "bag" idea is great! Thanks! I think DD may like this as well. Thanks so much for the info :happydance" I'm going to take pics of food she likes and put them on the fridge and see if she will start choosing what she wants via pointing. Gosh I have a lot of homework to do :haha: and shopping ;)


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## essie0828

Sun DD has hypotonia/hypermobility as well. Especially in her feet and ankles. And I understand what you mean about the more you do the more you can do. DD's recent progress has proved that for me :) despite how behind she is now she really has came a long way lately. Thanks hun :hugs: It's nice to hear from people who have been there.


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## sun

essie0828 said:


> Sun DD has hypotonia/hypermobility as well. Especially in her feet and ankles. And I understand what you mean about the more you do the more you can do. DD's recent progress has proved that for me :) despite how behind she is now she really has came a long way lately. Thanks hun :hugs: It's nice to hear from people who have been there.

Oops I got your LO mixed up with another LO on the thread! I forgot we already discussed the hypotonia sorry :dohh: Well at least the rest of my post made sense :haha: I noticed the most improvement from my son at around 2yo. That's when he started walking comfortably without holding my hand and it really gave him confidence to try more. He's always been very very cautious (probably because he was more unsteady). Once he could manage we started jumping on trampolines (though jumping took quite a while longer). hugs!


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## RachA

sun said:


> RachA said:
> 
> 
> It's Picture Exchange Communication system. You effectively use flash cards for communications but rather than just showing a card for milk the child has to build a sentance showing 'I want' and then 'milk'. The idea is that they have a book with lots if pictures and they bring the 'sentence' to you to ask for things or say things.
> For Esther it should only be a short term thing until she can talk properly (hopefully anyway). Other children may always need it.
> 
> How is Esther coming along with the speech? B's speech is coming along so well and they are thinking now that the delay is 70% a mechanical/muscle problem.Click to expand...

Esther's doing ok. She's still not talking properly but the number of words she has is increasing. She does struggle to put words together though. She seems to be able to put 3 or 4 words together if they are in a song for example but she can't (or won't!) put them together in order to make a sentence in just general conversation. It's almost as if when she hears the line of a song she thinks thats one word. Hope that makes sense!

Glad B's speech is coming along well and from your other posts it seems like it's all improving, even if it is slow going


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## sequeena

Sorry I've not been around, busy few days, no energy etc :dohh: hope you're all ok

Thomas had an eye appointment yesterday. His eyes have got better by 25% since June 2012 and they think he may not need glasses in a few years :D


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## essie0828

Yay Esther for learning new words! Even if putting them together is still pretty tough, new words are amazing :happydance: 

Yay for Thomas as well! It's great his sight is improving :happydance: Go little man. Sooo are you in the tww???? ;) I'm being a nosy pants again:haha:


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## sequeena

No, we didn't get to bd in time x


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## essie0828

Fx'd for ya hun. There's always next cycle


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## essie0828

I didn't know that T had Raynauds. I just Googled it for the first time. Does he have a lot of trouble with it? Does it mostly happen in his hands??


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## bumpin2012

Hi ladies, been a hectic/ rough few days here. either I've picked up a flu bug, or my ms is kicking into high gear these past 3 days. barely been able to hold down water, constant nausea/ dizziness. thank goodness my hubby can function without me! we've been trying to get our place ready to sell, we will officially be on the market tomorrow!

great news on the G man front. he's been back to responding for a few days, so I really thought Fridays appointment would be a waste of time. the ENT Dr was a bit of an ass. when he came into the room to see us, his exact words were " this is most certainly not a hearing issue. this is a global delay, and you should be seeing a pediatrician about this". I'm sure he only actually LOOKED in Gabriel's ears to be prove his point. shockingly ( to him, I'm sure) there is fluid on his left ear. his right is clear SO... we are to wait until his hearing seems to be gone again, and go back that day. the ENT Dr finally believes that he has intermittent fluid buildup affecting his hearing. once he confirms that theory, Gabriel will be getting tubes in his ears. score 1 for crazy mama!

yay for new words and improving eyes! great to see some improvements on here :)

I'm going back to bed to wallow in my misery. I hire this moves along soon. I seriously feel like I'm dying :cry: I really am a terrible sick person


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## essie0828

Bumpin yay for getting your point across to the ENT! What a prick. I think tubes have helped Hayley a lot. She's standing better, better balance, wider range of sounds she can make and generally better health. Every time she would catch a cold she would get a secondary infection in her ears. Systemic antibiotics never drained all the fluid even if the infection passed. Now, her first cold since the tubes she was a different kiddo. Super snot machine, we're talking gag mama kind of mucus but no fever or ear pain. It's like switching the pressure or vacuum in the Eustachian tubes and letting nasty stuff flow out her nose.


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## essie0828

Hope the MS eases up soon :hugs: I really like sniffing and nibbling lemons when im nauseous. Lemon zest in a ziploc bag to sniff and a quartered lemon to nibble really helped me when random smells would trigger my MS. And lemon ginger tea with sugar.


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## essie0828

So I've been reading some about ginkgo biloba (sp?) and it seems that there is reason to believe that the increase in blood flow caused by it has been used to treat Alzheimer's and multiple ischemic event dementia. It's also been used to treat Raynauds disease. I'm thinking that the damage to DDs brain would have to be somewhat similar to someone who has dementia caused by stroke, maybe just a different area. I'm wondering if there would be any benefit/ risks????


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## sequeena

Hope you are feeling better soon bumpin :hugs: yay for getting through to someone! T will most likely need tubes too so that's 3 kids including Hayley.

essie it's a condition that runs in my family, mostly on the male side. The tips of his fingers go red, then white, his lips turn blue and he shivers uncontrollably. The first time he did it we thought he was having a fit and rushed him in. I did not realise anything could help (bar making sure he was always wrapped up) so I'd be interested to know about that ginkgo stuff.

Now the weather is turning kids are wearing coats but T is in his winter hat, gloves, winter coat and heavy blanket (if he's in the pram as I cannot find the bloody footmuff). Even in the summer I carry a light blanket. If I do all this he has no problems but back in may we went to folly farm with my family. He had lots of fun all day then suddenly started shivering and his lips went blue so he had to have his coat, a hat and 3 blankets on him - in may!! I do worry about him in the winter (he's sleeping more in our bed at the moment so he has our body heat too) but I just have to remember to keep everything with me.

Sorry for the essay :haha:


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## essie0828

No apologies needed, I was curious. ;) That would have scared me to death if Hayley did that! Poor lil guy :hugs: So he has a vascular reaction to the cold that causes the shivering, white fingers, and blue lips? That's my understanding from skimming Dr. Google anyway :haha: Supposedly ginkgo (an herbal supplement here in the States) has some properties that cause dilatation of blood vessels, particularly the tiny ones in the brain, fingers, toes ect...... but who knows really if it helps? In theory it seems it would. 

Goodness you will have to get creative with keeping him warm in the winter. Our winters are pretty mild, we haven't seen a good snow in ages! We do get ice storms/ freezing rain quite a bit. Those are useless, destructive, and miserable. Ugh! Hate em. I miss a proper snow :( DD has never seen a snow man :nope:


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## sequeena

Sorry I've not updated for a while, how are we all?

Thomas had the nasal flu spray on Tuesday. He was great. He was eating as they did it :haha:

I've finally been able to sort his speech therapy. He starts group sessions on november 7th and will go weekly until december 12th.

His sleep actually wasn't too bad last night. I took him for a walk in the pram around 8pm. He fell asleep at 9pm woke an hour later then slept until about 2:30am. Sean brought him to our bed and he slept until 8am :) I think the fresh air helped.


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## sun

Sequeena - Wow that sounds like a great night! When he wakes is it for a long time? My daughter goes through phases of waking for an hour or 2 in the middle of the night zzzzz She normally sleeps from 10-7am waking twice - but usually it isn't for too long so it's fine. The occasional phase of waking for hours definitely isn't though.


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## sequeena

These wakings were only for a few minutes usually it lasts 3-4 hours


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## sun

sequeena said:


> These wakings were only for a few minutes usually it lasts 3-4 hours

Wow that's great! I really really hope it continues. Hours-long night wakings are awful and make it so hard to function. With my daughter they are usually a phase so I really hope this is the start of better sleep patterns for T! :hugs:


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## essie0828

Hi Ladies :hi: 

Sequeena I hope T is changing his sleep patterns for the better :hugs: and :happydance: I saw a little boy that looks so much like T at the rehabilitation hospital today. He was Ts' American doppelganger for sure! 

I think that every female that works at this place is pregnant! Honestly there are 6 ladies including Hayleys therapist that are pregnant. Today she told me she was having a boy and he's due on the same day Hayley was. Girls I got babies on the brain or something :wacko:


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## bumpin2012

I officially have a drunk walker! he's falling every 10 steps, but getting back up and continuing on his way... holy crap, I have a toddler!


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## bumpin2012

hopefully this is the start of better nights for everyone in your house sequeena!


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## sequeena

He's back to normal now :(

Ah how cute another T :D

So glad he's walking bumpin x


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## sun

sequeena said:


> He's back to normal now :(
> 
> Ah how cute another T :D
> 
> So glad he's walking bumpin x

I might have missed it, but has anything happened with the melatonin? I know some kiddos it has worked really well for xoxo


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## essie0828

Go Gabe Go! :happydance: 

Sorry sequeena :hugs: I was really hoping the aromatherapy was working for you guys. I'm curious about melatonin to. Has his pediatrician prescribed it or are they wanting to wait to give it to him?


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## sequeena

We won't see hispaed until sometime in November which sucks :(


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## RachA

We finally got a letter through today for Esther's next lot if speech therapy :) it starts next week for 6 weeks. Unfortunately we are away for the second one so I've called to tell the this-they've said they'll add another session on to the end but they've said that every time and it never happened. So hope it does this time. 


It was Esther's birthday today. It's days like this that I realise how different she can be. She's 4 but still had no real idea of what was going on other than getting birthday cake. Most of her presents are clothes because there is no point in getting toys for her!


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## sequeena

Happy birthday Esther I hope she's had a lovely day :hugs:


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## RachA

Thanks-I think she had a good day. She's celebrating over 3 days as OH hasnt been around today. So she is having our presents tomorrow along with my in-laws things. Then she'll have my parents on Sunday as they aren't available tomorrow. It also means she gets two cakes (1 big cake that I've cut in half and decorated seperatly) :)


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## bumpin2012

happy birthday Esther!


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## essie0828

Happy Birthday Esther!


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## sun

Happy Birthday Esther!! :hugs: 
B turns 4 in November and we're trying to plan a party but it's tough as he still doesn't really get them either. When we go to one, he just does his own thing and doesn't really do group activities or play with the other kids. He does like presents though!


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## aliss

:sick: I just sunk $3000 into private fees because the waitlist here is 18-24 months. Brutal. OH is transferring his job and we will be putting the house up for sale to move to another province with better support. This really sucks :cry:


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## sequeena

Oh no aliss that's awful :( it's ridiculous how long things can take.

So Thomas has just dropped off. It's 1:30am. Yawn!! He did sleep 7-8pm but that was it.


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## sun

aliss said:


> :sick: I just sunk $3000 into private fees because the waitlist here is 18-24 months. Brutal. OH is transferring his job and we will be putting the house up for sale to move to another province with better support. This really sucks :cry:

So sorry you have to go through all that :( Where are you looking to move?


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## bumpin2012

Yikes! Aliss, that's crazy! Where are you looking to go? Will you stay in Quebec?


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## RachA

sun said:


> Happy Birthday Esther!! :hugs:
> B turns 4 in November and we're trying to plan a party but it's tough as he still doesn't really get them either. When we go to one, he just does his own thing and doesn't really do group activities or play with the other kids. He does like presents though!

They always like presents :haha:


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## aliss

Ah Sequeena I'm sorry you had a rough night :(

We're hoping for Alberta (wishful due to OH's job) as they provide $60k/year support until age 19 for children with autism, or if not that, then possibly Fredericton NB (maybe Saint John). B/C of OH's government job (he's the token Quebecois) we need to go wherever they require a bilingual guy. 

I've been chatting with the New Brunswick Autism Mom's Group and they've given me a lot of great advice, it's hopeful, and housing is a lot cheaper. But still would love to go out west, I miss it. But housing is so expensive there now. I remember people moving to Calgary b/c it was cheap! lol! What happened?!?!


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## Peanut78

Bumpin - go Gabe! :happydance:

Happy birthday Esther! :happydance:

Aliss, that is tough - I hope you find a base that you want to live in and has all the accessible services you need :hugs: We are lucky in that our private health insurance through OH's job covers all our therapy and we receive a grant from his employer for any additional services which may be required in school. OH and I have an agreement that at least one of us needs to stay on a permanent contract in order to maintain this set-up (once upon a time we had dreams of building a house in Cape Town and both doing private consulting :dohh:). On the other hand where T's needs have really affected us is which countries we can live in given availability of quality services - we both work in the humanitarian/ development sector so much of where our work is in developing countries.


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## essie0828

Omg aliss that is brutal :hugs: and a 2 yr wait for support is horrible :nope: 

If they weren't covered DDs' therapy sessions would cost 1000$ a week! Its 200$ an hour and she has 5 hours of 1to1 therapy a week. I'm so very thankful we have this much support. 

Sequeena would his pediatrician prescribe him melatonin drops if you rang them? His sleep patterns are more than disruptive. Hun I don't know how you do it all the time :hugs: Hayley has just had a rough night, one rough nite in ages, and im worn out.


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## essie0828

Hi :hi: peanut!


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## essie0828

Girls I'm going to have a whine. DD will not sleep anywhere but on me or DH. It started yesterday and has carried over into today. She has just cried and cried at me when I lay her down. I sorta think she is getting sick or something. No fever just really crabby baby, and that's not her style if everything is ok. We see the ENT tomorrow for follow up on the tubes so I will let him know. She doesn't have drainage from her ears so I can't tell if she has an infection or not. And I've strained my back with DD and doing some housework over the weekend. Ibuprofen is barely taking the edge off it and I'm sat on a heating pad trying to loosen it up :wacko: Ok whine over ;) I know all you ladies can relate. Lol, I told DH that it sucks when your favorite person to hang out with is under 3ft tall. It's a killer on your back :haha:


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## essie0828

Oh and btw she's just Barely under 3ft tall. 35 inches tall at just shy of 20 months! I'm going to have to put a brick on this kids head :haha:


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## Peanut78

Whine away Essie! :kiss: Does sound like she is coming down with something - be interested to see what the ENT says. :shrug:


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## sequeena

Oh poor Hartley hope she's back to her normal self soon.

i have news. Thomas is having his operation tomorrow morning. I found out an hour ago. I am so scared for him :(


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## aliss

Good luck for tomorrow :hugs


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## aliss

There is a little boy in my mom's group who has Global Development Delay too and he always reminds me of Thomas!


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## sequeena

Hayley! Oh man auto correct isa bitch.

Ah that's so sweetaliss, is he very happy too?


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## aliss

sequeena said:


> Hayley! Oh man auto correct isa bitch.
> 
> Ah that's so sweetaliss, is he very happy too?

He is such a doll, very sweet little boy. He has actually just moved away because his mother was finding it too hard here (she doesn't speak French), and having a child with special needs plus a delay?? It's too much, it really is. She was only 20 too. I hope they are happier closer to family. He was always smiling! :)


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## sun

Aliss - Yes when we were looking into programs for GDD and autism we also saw that Alberta has loads of resources. We ended up staying in ON though as we also wanted the support of being close to family. In case you're considering moving to ON, the place just down from us is for sale lol. Our kiddos could hang out! :haha:


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## essie0828

sequeena said:


> Oh poor Hartley hope she's back to her normal self soon.
> 
> i have news. Thomas is having his operation tomorrow morning. I found out an hour ago. I am so scared for him :(

Is this for his thumb?? Aww poor you just finding out :hugs: I know you have to be so scared and worried :hugs: Will be praying for him. He will be just fine. Give him cuddles and kisses from all his B&B buddies ;)


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## sequeena

Yes it is :(


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## RachA

Essie-moan away :) 
It sounds like she's coming down with something-hope she gets over it quickly if she does. 

Sequeena-hope it all goes well for your little man tomorrow :)

Esther starts her next block of speech therapy on Thurs. part of me is glad it's only for 6 weeks as I seem to be running here, there and everywhere anyway!!


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## bumpin2012

Aw, Hope everything goes well for the little man tomorrow

Hugs to mama!


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## essie0828

Itching for news about Ts surgery. :hugs: Hope all is well sequeena.


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## sequeena

We were on the ward by 7am and T went for his operation at 10am. I went with him to theatre and held him. They put local anaesthetic cream on his hand then seconds later inserted a cannila and he felt everything. It was horrific he screamed so much I could barely hold onto him. Theyngave him general soon after and he was gone within seconds. 

In his op they were meant to do 1. Muscle transfer 2. Stabalise his thumb 3. Lengthen the distance between his hand and thumb that bit of skin between your thumb and index finger. They didn't need to do the muscle transfer as his grip has got better :D so the op took 2 hours.

There is a risk he'll out grow what they've done and he'll need another operation but I hope not.

He's had 2 full beakers of squash and a slice of jam on toast. He's peed and walked.

He's asleepp now after medicine.


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## essie0828

Awww bless him. :hugs: So glad he got to skip the muscle transfer. The general anesthetic procedure sounds horrid :(. God I really hope I don't have to do that with DD, but I probably will sometime in the future. Sigh. It's been a hard day mama, try and get some rest :hugs:


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## Peanut78

That's brilliant they didn't have to do the muscle transfer! :happydance::happydance::happydance:

It's horrible watching them go under - I cried my eyes out with both of mine :cry: For my two they used gas to put them under and then inserted the canulla - I'm sorry T had to experience that pain :hugs:

Will T be spending the night or are you headed home later?


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## moggymay

Same here with the canula Peanut....Mogster was distraught when they tried to remove the plaster covering the local anaesthetic cream so after three of us holding him down to do the canula they used gas and did the canula once he was out....ask him now and despite being 5 at the time all he remembers of the experience is that they had a room full of toys and little dvd players for all the children :) T will soon forget what happened, you will take longer to file it away...I know I did. Saying that to see the change once they have had their op is fab. What happens next for T...is he in a cast/sling?


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## sequeena

He definitely remembered because when they took the cannula out he went ballistic screamed, kicked and almost caught a nurse in the genitals. My poor boy. We will be here for a few more hours for them to keep an eye on him then we're going home :) Thomas is still asleep as is Sean. 


The occupational therapist has just been round to tell me what to do. We're back in 4 weeks to get his cast off.


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## essie0828

Poor little man. Cannulas hurt! I hate them. I understand why he would want to kick someone in the junk :haha: A cast for 4 weeks? Poor you and Sean :hugs: someone will be getting whacked with that. ;). I know DD would use it as a weapon :haha:


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## sequeena

We still co sleep too!!

My boy :cloud9:


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## moggymay

Give it a few months and he will forget and his thumb will be strong and cast free :) Hope you are managing some rest...


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## essie0828

Awww goodness...That pic makes me wanna cuddle him so much. Poor little guy. And all that tape! I hope that comes off easier than it looks like it will :hugs: Oh my! We still co-sleep to so I understand. That's gonna be a dangerous little bed fellow :haha:


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## sequeena

Thanks both he will need further surgery but when he's older :)

There's so much tape because toddler arms are cylindrical and it would fall off without the tape. The tape dissolves so we need to cling film his arm when he's in the shower.


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## sequeena

Also he has been diagnosed with hyper mobility syndrome :(


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## essie0828

sequeena said:


> Also he has been diagnosed with hyper mobility syndrome :(

What is this?? DD is hyper mobile in her ankles and feet but I've never heard of it as a syndrome. :dohh:


----------



## sequeena

I've yet to research it essie but this is what the nhs website hss written
https://www.nhs.uk/Conditions/Joint-hypermobility/Pages/Introduction.aspx


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## essie0828

I did a quick google. Do you have very flexible joints? Or Sean? Is it just Ts' thumb or does he have other joints involved? 

DD has very flexible joints due to the hypo/ hyper tone of CP. Keeping her from getting injured is a bit of a chore.


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## sequeena

I have problems with my knee the joint isn't connected properly and dislocates. All of Ts joints are affected I thought he was clumsy and lazy for not walking very far.


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## essie0828

I found this https://www.medicinenet.com/script/main/mobileart.asp?articlekey=390

Have the docs mentioned Ehlers-Danlos syndrome?


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## essie0828

sequeena said:


> I have problems with my knee the joint isn't connected properly and dislocates. All of Ts joints are affected I thought he was clumsy and lazy for not walking very far.

Awww sweetie :hugs: It's probably because his muscles aren't strong enough to stabilize his loose joints. PT will help him i think. The things I've read say hypermobility syndrome runs in families (genetic). If you have issues with it then he probably will to. I hope its not severe and he can grow out of it with some strengthening :hugs:


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## essie0828

Sequeena Ive only seen the little guy in pictures but his skin looks very delicate. Does he bruise easy or have loose/ stretchy skin?


----------



## essie0828

I really hope I'm not terrifying you with this Ehlers-Danlos stuff. But I would ask a doctor about it if he has any other symptoms besides the hyper mobility. I'm so sorry if I am :hugs:


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## sequeena

Yes essie his skin is like that x


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## essie0828

I feel like a mean witch for worrying you, but he has a few symptoms of Ehlers-Danlos. Don't panic. It's a connective tissue disorder that involves how your body produces connective tissue. Most involvement is in the joints. It can be very mild. And please understand I'm no doc, but I would have given anything before DD was diagnosed to know Why she is the way she is. And I got kinda good at matching up symptoms to hundreds of diseases and disorders and syndromes........yada yada. I would mention it by name and tell his pediatrician he has been diagnosed with hyper mobility syndrome and has delicate skin.


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## essie0828

https://www.nhs.uk/conditions/ehlers-danlos-syndrome/Pages/Introduction.aspx


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## bumpin2012

aww, poor little man. thanks for the update sequeena, I've been thinking of you guys all day. hope you and hubby got some rest too


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## essie0828

Ok, for T to have EDS either you or Sean would have to have it. It's directly passed from one parent to the child. If you are suspicious that he has it, you can save him the testing (skin biopsy) by talking to your personal doc and asking for testing for yourself. If you or Sean don't have it, T can't have it.


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## sequeena

Thanks girls I'm finding it difficult to take in.

Essie only I have problems with my joints, honestly not sure I have ED syndrome though.


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## essie0828

Hun Ive been known to be a bit overzealous. And am more than likely barking up the wrong tree. I honestly have good intentions, just to pass on info I stumble on. :hugs: Take it with a grain of salt hun and sort it out when you can do it best :hugs:


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## essie0828

And I to think if you had it you would know by now. I don't see how it could go undiagnosed in an adult


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## sequeena

Oh no not you hun just everything that's happened today x I think he just has hms nothing more


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## essie0828

I'm sure you are right. You know him best. :hugs: I get all worked up looking into this genetic stuff. So sorry, really. Hope you guys get a good rest, and you have our prayers.


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## Peanut78

Hi Sequeena, I'm so happy to hear T's surgery went well, but sorry about the hypermobility. I think Sun's LO on this thread also has hypermobility - maybe she can offer some advice and assurances. 

This may explain some of his delays tho - for example delays in his gross motor development i.e. walking etc. I know that hypotonia can also impact speech delays as well - this may well be the case for hypermobility also. So in some ways although disheartening it may be bringing you one step closer to understanding some of the challenges T faces and why he may be delayed in certain areas.

Sending you major :hugs::hugs::hugs:


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## RachA

Sequeena-how is T today?


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## sequeena

Thomas is doing really well thanks he's back to his normal self x

How is everyone?


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## annanouska

Hi ladies :flower: 

Sequeena I saw your pic when you boosted on something in toddlers and saw T had his op. Just wanted to pop in to see how he's doing, hopes got some rest while he was sleeping well too :hugs: 

Not sure if you remember my LO has hms too. His is mainly his ankles but shows some degree in knees and elbows. I can't remember if you have said before but can you go swimming? It helps quite a lot and I have noticed a big difference but seeing him walk with a pushalong today they looked quite bad again, he goes back in a few weeks. 

I have a friend who has hms and she said it could get a bit achey growing up but mostly hasn't caused too many huge issues. Walking and other exercises are the main ways to mprove it but consequently it is much harder to walk/exercise/move more. 

Nothing new here, his feet are still an issue, still cruising, he is struggling with not being sle to communicate I think at the minute but we will go there x


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## sun

sequeena said:


> I have problems with my knee the joint isn't connected properly and dislocates. All of Ts joints are affected I thought he was clumsy and lazy for not walking very far.

B also has hypermobility (paired with hypotonia) and he was very very clumsy for a long time. He needed my hand to walk on uneven ground (grass, sand, etc) until around 2yo or so. He is doing great now, but still not as coordinated or strong as other kiddos his age. He also has very shaky balance and due to his low muscle tone when he falls, he often falls hard and hits his head. I also have hypermobile joints (shoulders, ankles, hips) so I'm not sure if it's something genetic that he just happens to have in addition to other things, or if it is part of his GDD.


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## sequeena

From what I've read hypermobility is genetic but it is definitely s factor of GDD as obviously they find it harder to do things. Our poor kiddos :( it is amazing how similar their problems are

Thanks annanoushka I can't go swimming but my oh will be able to.


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## wantabean2

hi ladies :hi:

I was wondering if I could join?

Right where do I start? This is gonna be a long one :blush:

My pregnancy with Cameron was rocky at best, I had a lot of ups and downs and he wasn't the best mover. The morning of the 18th Nov 2010 at 38weeks I hadn't felt him move so decided to go get checked out (this happened regularly) After an hour monitoring they weren't happy so decided to burst my waters. This is where everything went downhill. 20 mins after getting my waters burst I was rushed into theatre without a clue what was going on. I got knocked out and Cameron was born. He was rushed into the neonatal intensive care and when I woke I got told that they didn't think he would make it through the night and if by some miracle he did he would be severely mentally and physically disabled. Everything went wrong. He was born with virtually no blood so had to have 5 transfusions, his organs were failing, he had bleeding on the brain, his bloodwork was completely off, he needed ventilated and he was having a lot of seizure. We got him christened the next day and believe it or not he came home 10 days later. His medical team and I couldn't believe it. He truly was a miracle. 

so that was his birth but since we have had nothing but problem after problem after problem.

He has missed every milestone except walking ( he had hypertonic muscle tone so I think that's why he walked because he had to be upright ALL the time) 

He is definitely not physically disabled so that's one thing off the list :happydance:

He is still under the neonatal paediatric consultant care team and they have queried loads of stuff. first it was autism as he wouldn't look at you while feeding but he was only about 8 months old so I thought that was way to young to diagnose anything. then it was cp due to his hypertonic muscle tone but that corrected itself luckily. He also took seizures, ranging from absence seizures to tonic clonic seizures, until he was 16months but have stopped now. :happydance:

As I said he has been delayed with everything but until recently I never knew that it was an official diagnosis. I actually only found out as he started nursery early because the health visitor thought it would help and I seen her letter she wrote and it said he had development delays along with other problems. 

He was always an exceptionally quiet baby. He didn't babble at all but started saying mum about 14months. that was it until just before he turned 2. he seen a speech therapist twice. the first time he was only saying about 7 words and then two months later was saying about 20 words :) he uses makaton a lot and that has dramatically improved his speech so he got discharged but I was told to contact them if I had any further worries. 

I have noticed a lot of changes recently. 

I feel completely lost so I will list them :blush:

* He has started to have extremely violent episodes towards his younger brother (punching him full force in the face, really battering him around the head with a kids metal garden trowel :cry: just because Adam (little bro) wanted to play) 
* He refuses point blank to interact with any children in his nursery class to the point of when they are doing group things he will sit himself and refuse or will sit in the group but sits with his back to everyone ignoring them.
* Getting him into nursery is starting to take its toll, he throws himself to the ground and starts screaming extremely loudly the minute we walk in the door every day :nope:
* He doesn't have the best eye contact
* He hates people he doesn't know talking to him
* He doesn't seem to be anywhere near reaching the milestones for a three year old eg he cant dress or undress etc
* He hasn't grown in over a year and a half :/ He is proper tiny. He wears 12-18month clothes (and they are really quite big on him) even though he is nearly 3.
* His speech seems to have completely stalled
* He hates loud noises like the hand dryer or more than a few people singing eg Happy Birthday (he drops to the floor and screams hysterically)
* He doesn't respond whatsoever to discipline, naughty step etc or if you take something away for him being naughty or even bribery. He genuinely is completely unfazed.

I don't know there is a lot more but Im really starting to get down about it. He has a meeting with his consultant on the 14th Nov (4 days before he is 3 :nope: ) so Im gonna bring this all upto him but I just feel like I need to know whats going on yesterday. 

I have contacted an early intervention programme but it is really quite pricey and to be honest we are comfortable but far from flush. I am willing to pay so that he can have the extra help but if I could get help with that then all the better. I really don't know where to turn. I am gonna try set up a meeting with the nursery as my questions are being answered with very very vague answers and its frustrating and I am considering speaking with his Gp and /or HV next week to see what they can recommend. 

Sorry for the essay but its been building up for a while and I feel that you girls prob understand the frustration and helplessness Im feeling.

If you read all that well done :) 

and again :hi: lol

One last this thing lol I am frustrated but I would take every disability other than lose him, I just need to know how best to help him iykwim 

xxx


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## sequeena

Hi wantabean you have certainly been through a lot :hugs: could your lo be autistic? It's hard to think about but it certainly sounds like he has some markers xx

Have you had a ruth griffith test done to see where he is developmentally. If not request it then portage can grt involved xx


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## essie0828

Hi girls :hi:

Long weekend here, my fur baby is really sick. She's a 5yo Jack Russel and is Hayleys best friend. Off to the vet again today and hoping for the best. 

DD is doing pretty well. Speech therapy is not coming aling like I had hoped but OT and PT she is doing really good in. She has managed to say "bubbub" (bubbles) a few times this week. ;) That's a whole new word for her. And we have finally got her drinking from a straw. :happydance: 

How's T doing sequeena? Hope he is doing well :hugs: 

:hi: wantabean. Welcome :hugs:

:hugs: to all the other special needs moms out there struggling.


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## sequeena

Oh dear. Hope your dog is better soon! 

Well done Hayley that's awesome!

Anyone want to see Thomas do the actions to the wheels on the bus? This should work
https://www.facebook.com/photo.php?v=10202684037247258&set=vb.1388356992&type=3&theater

Thomas is ok thanks, I had his appointment to take the cast off through the door this morning. It's on 19th November. I can't wait for it to come off. This morning he spilt milk on it :sick:


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## wantabean2

Thanks for the warm welcome :D the only rests he has had to date was an MRI and an EEG but that was the seizures. His consultant has had a very "wait and see" approach though he has said from the start that he expects Cam to have problems. Cam was ment to be discharged from his care at 2 but they decided to keep him on untill he is 3 due to his delays. I would put money on him being on the spectrum but i don't want to label him untill it has been diagnosed. I am however suck if waiting and i feel personally that I need help in how to teach him so that he can progress. I spoke with his nursery today and told them i would like to have a sit down to discuss my concerns and ways to help him. His worker immediately agreed and the head of the nursery would like to join aswell so i think they have noticed too. Fingers crossed they listen because i am sick if medical people treating me like im a child that is over reacting. I have never yet been wrong about Cameron.

Essie that's rubbish about your wee doggy, hope she feels better soon. bubbles us a great word congrats. My youngest is obsessed with bubbles, makes me laugh :D

Sequeena that is gonna be one smelly cast lol hope T recovers quickly :D 

How gas everyone been today? I had a rough one :( I sat this morning trying my best to get Cameron to dress himself while is younger brother who us 14 months younger and was 2 months premature dressed himself. It definitely makes things mire obvious now that Adam is flying past Cameron developmentally :( Don't get me wrong, i an so proud of Adam but it makes me feel bad for Cameron :(

Xxxcxxx


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## wantabean2

Sorry about all the errors, using my phone lol xxx


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## essie0828

Love the video of Thomas! 

Our dog has pancreatitis. :( Hayley likes to share her food with her and it has made her ill. :nope: Have to be more diligent about keeping people food out of the dogs reach.


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## bumpin2012

yikes! Essie, hope the poor dog feels better soon! Pancreatitis sounds rotten! And yay for a new Word! Go Hayley!

Welcome Wantbean2. Sounds like a rough go for your little guy. Hopefully you guys start to get the assessments and help you need.

Glad to hear Thomas is doing well... That is gonna be one smelly cast... I don't think I could stomach it at this point... my sense of smell has become superhuman these days!

G is doing well. Walking (drunkly) pretty much everywhere. His balance is terrible. I think his ears are starting to fill up again, so hoping we get a conclusive answer soon! Apparently we will be starting Speech Therapy sometime in December.

"Bug" is doing well - 12 weeks tomorrow! I cant believe how fast this pregnancy is going! I got a Doppler the other day. Took a few days, but I managed to find the heartbeat yesterday. MS is easing off, except during/after night shifts. It takes me a day or 2 to recover from them. Shift work SUCKS while preggo!


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## wantabean2

Thanks bumpin :D im definitely ready for the challenge. Reading through this thread helped loads :) congrats on bug and thank goodness ms is easing off. Congrats in finding heartbeat, that's my favourite noise ever lol xxxx


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## sequeena

Evening all :hugs:

How is your dog now essie?

Can't believe you're already 12 weeks bumpin that's amazing :hugs:

I am so exhausted today :( Thomas slept 7-8pm and 8-9pm last night with a waking in between then was up for the night at 10pm :( he didn't go to sleep until 2am but before that he managed to pull gauze from inside his cast and he was in agony :cry: I gave him some painkillers and he calmed down then went to sleep. I was woken at 7am by my OH who forgot his damn house key :dohh: and couldn't get back to sleep :(

I took him to baby clinic and he was weighed. He's 28lbs exactly at 26 months :) the doctor checked his thumb (well, what he could see by shining a light down the cast anyway) and it doesn't look infected which is good news. He's also been referred to physiotherapy. Another one to add to the list. I feel like tearing my head out my calendar is just full of appointments, some clashing and need to be sorted. I've not spoken to my solicitor since June because so much has gone on I feel awful for it but this is much more important than chasing up legal stuff. My OH isn't much help either.

Thomas has been so cheeky today. Climbing everything, dancing, running, jumping etc. he found his hide n squeak eggs and every time he fit them into a hole he'd say 'eeeeeeeeeeeeeeeeeeeeeeh'. Even when they didn't fit :rofl: do you think I praise him too much?? :haha:

Tomorrow his portage worker is coming, family are visiting and I have a food shop being delivered. I'm not stepping foot out my door!!


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## essie0828

Hi ladies :hi: 

Sequeena :hugs: Poor Thomas. Tired boy and mum today, good you don't have to go out. I'm so envious that you get groceries delivered to your home! No grocery stores that I know of deliver. Thomas did "Wheels on the bus" so well! His speech therapist will have loads to work with, his receptive language is looking good mama. Good work. DD can't do that yet. 

Oh my goodness. I had a very similar night with DD except snot is the culprit. Colds suck. :( Tizzy evidently does not have pancreatitis (had her to vet AGAIN) but a sore back. I really thought it waz her tummy she was painful in but seems she eithet has a pulled muscle or an inflamed disk. Pain meds and rest for 10 days. No running, no jumping and no climbing. This is an 8lb Jack Russel. Keeping her still is freaking impossible. She's lightning fast and can climb better than any cat. So have been sitting in the bathroom with her in my lap keeping her asleep. Lol. This HAS to be what having 2 babies is like. :haha: 

Ladies have you ever ran over a parking curb? Be honest. I completely smashed one today with DH, DD in the car. I was so frustrated and distracted that I just plowed right over one in my MOMS' car! Oi! I bent a cross member and punched a small whole in the exhaust. Now her Caddy sounds like a log truck. Today was a total fail. Have a photography session booked tomorrow but I am so thinking of canceling. I can re book anytime. Just want to sit in, cook, and play with DD. Thursday is Halloween pagent at the rehabilitation hospital and taking car to the garage. I'm just burnt on driving. And DH has not shut up about it! We stay pissed off at one another anymore....sigh. That's a whole other post though and my thumbs don't have it in them. One highlight of the day, found some adorable clothes for DD today. Lots of sparkle and stars. ;) brightened my day right up.


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## annanouska

:hugs: sequeeena I've seen those eggs I really want to get them but dh thought they look rubbish :nope:

:flower: hope fur baby soon recovers. 

It does sound like you like your lo may be on the spectrum somewhere, I hope you get the answers you need. Have you tried the then and now boards for him to t and help him follow his routine? 

Bumpin 12 weeks has flown by. :hugs: 

Nothing new her except lo has managed 5 weeks at nursery without attacking anyone :flower: he has started using a push along walker I'm very proud of that x


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## sequeena

Annanoushka what great news I'd be proud too :)

Essie I don't drive :haha:

The eggs are a pain as he keeps losing them but they are good as they make noises and it's a shape sorter :)

Thomas' hand/arm is itching in the cast so he's having piriton liquid twice s day. Part of me hopes he will sleep but it doesn't seem to help him like that.

How was Halloween for you all? Thomas didn't like trick or treating.


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## annanouska

Awwww how cute does he look?! We hardly had anyone knock and I had loads!! Will take him next year if he's walking . Poor thing being so itchy. Hopefully it's healing up nice for you. I used to use a ruler on my leg cast. I hadn't had surgery tho so wasn't really dangerous. 

X


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## essie0828

Love T's costume! He's so stinking cute! How's his arm doing? 

Well the in-laws visited and brought Hayley loads of goodies. We didn't trick or treat but we dressed DD and the dog up like little bumble bees and handed out candy. We had quite a few kids show up. Everyone loved the baby bee and her lil bee friend :cloud9:

I let everyone feed her candy so it's past midnight and she's just now starting to wear down. She has been signing "more" like a little candy junkie. :haha:


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## nicki01

Hi every one! I think I posted in here a long time ago!
Will give a brief run down!
I've been concerned about my little girlie Charlie since she hit 2 in December last year, well its taken bloody ages and lots of pushing on mine and nurserys part.
She had her ears checked, all clear, had an assessment with salt, confirmed she needs therapy as she doesn't talk, seen a pediatrician who said all she could see was a very difficult child and that I really had my work cut out so refered us to CDC for assessments (she told me this info the day before my 2nd baby was due! Lovely lady lol).
Anyway we are now 2 assessments down with 3 more to go! I will meet with a different paediatrician on Wednesday next week to give her all my info. 
We should get a diagnosis or at least a plan of action on the 20th nov when we meet the team for the summary!
Hope that makes sense as I'm on my phone!
My concerns with Charlie are: speech, behaviour, no eye contact at all, very very anti social, wants to be on her own all the time. Appears vacant at times, ignores us when we talk to her, hates loud noises. Gets distressed if made to join social activities. 
There is lots more to that list, that's just a fraction of the bits I've noticed!


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## sequeena

Hi nick, yes I remember you :) glad things are finally moving it can be a real nightmare getting the right help for our children especially when you can't tell straight away what the problem is. Assessments aside how is your lo doing? Congrats on your second lo too :)

Did you get a pic of hayley and the dog in their costumes essie? Sounds like a fun night :D

Today has been real tough for me :( T hasn't been completely out of control - head butting and biting but the biting happens every single time he hugs me. I don't know why he's doing it but it's really upset me :(


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## essie0828

sequeena said:


> Hi nick, yes I remember you :) glad things are finally moving it can be a real nightmare getting the right help for our children especially when you can't tell straight away what the problem is. Assessments aside how is your lo doing? Congrats on your second lo too :)
> 
> Did you get a pic of hayley and the dog in their costumes essie? Sounds like a fun night :D
> 
> Today has been real tough for me :( T hasn't been completely out of control - head butting and biting but the biting happens every single time he hugs me. I don't know why he's doing it but it's really upset me :(

We did get pics. Some are on FB. I can't post them on here from my phone, grr. We had the exact same problem with Hayley biting. Just like that to, here she would come in for a cuddle and bam. She broke the skin on my chest. Her speech therapists have recommended we do chewy tubes with her. They are on Amazon. We have an assortment of safe teething toys in a special box (oral box) that I give her access to all the time while discouraging her from biting anything or anyone else. The STs give her chew breaks during therapy and anytime she's a little to squirmy and cranky I give her the box. She hasn't bit me or DH in weeks.


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## essie0828

Oh and added bonus for Hayley is it strengthens her "talking" muscles as well. Helping her learn to coordinate her muscles for speech and saving mama from pain. Her bite is like an alligators because high tone engages when she's excited or angry. Her jaw muscles can clench with massive strength and not let go for several seconds.


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## essie0828

www.chewytubes.com


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## essie0828

Well I went on Amazon.com to get a link to a few toys we got DD and found them intermingled with sex vibrators and dog toys :rofl: oh my! I typed oral stimulation toys in the search box, maybe try rewording that :haha:


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## essie0828

Hi nick :hi: hope you get good news on the 20th dear. :hugs:


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## nicki01

Thank you, fingers crossed I get some answers. Each day is becoming more of a battle, if I new how to help her I would. I don't want to label her with what I think untill we know for sure!
My 14 week is still snoozing in her bed but me & Charlie have been awake since 4, it does make me laugh, I never for 1 minute thought it would be the toddler who had me up whilst the newborn slept!
Was kinda hoping she would crash again so I could get another hour but its not looking to hopefull now times getting on!
Hope everyone has a nice Sunday, my partner is off
Out so its me and the girls; we are going to Have a DVD and duvet day I think!


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## nicki01

Essie I love your 2 little bumble bees! So cute also am v jealous of Thomas's fancy dress, he looks adorable!


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## sequeena

Lmao essie!! Let's hope your hubby doesn't look at your searches he'll think he's in for some fun in the bedroom :rofl: they sound great though I'll definitely look into it for Thomas x
Oh no nick did you get anymore sleep?


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## essie0828

Good thing the baby is a good sleeper nick :hugs: I hope you have a lovely day cuddled up with your girls :)

Hayley has slept 4 full nights in her crib, in a row! :happydance: That's a record for us. I have to admit though, I've slept terribly without her. She's still in our room and I hear every movement she makes when she is settling herself back to sleep. Almost like being hyper aware. I still cuddle her to sleep then put her in her crib. She won't fall asleep without me but we're making progress.


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## essie0828

Hayleys ST also recommended us to give her a vibrating toothbrush to play with. She drools quite a bit and the toothbrush helps them to learn to swallow more often. It has helped some but if her nose is stuffy all progress is lost.


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## nicki01

No I didn't get any more sleep, the worst part is tori still feeds 2 hourly but this morning was the first ever morning she has gone longer so had Charlie not woken I could have had longer than an hour solid for the first time in ages!! Lol.
Had a nice duvet day with the girls tho! I've shown Charlie how to make a den using sheets and blankets so she has had me doing that all day, nice to have an easy going positive day with her today!


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## essie0828

Aww blanket dens are the best :cloud9:


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## nicki01

Hope everyone is ok! 
We had a bad day today, was supposed to be going to sing & grow this morning but Charlie was up grizzling and crying all night, couldn't figure out why! Getting up this morning realised she had at some point after I put her to bed has a none smelling poop and as it had been in her nappy all night has given her really nasty nappy rash! :-( I feel awfull, I had to put her in a cool bath as I couldn't wipe her she just squeeled in pain! Had her nappy free for most part of the day and sent her to bed tonight covered in nappy cream! Also treated us to fish and chips at lunch time but whilst bringing both girls in from the car I put them on the stairs and the dog ran of and ate them!!!
Hoping Charlie's butt is better tomorrow as the poor little mite could hardly move today! Will be checking her nappy when I'm up feeding tori tonight to check she hasn't pooped again!!


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## essie0828

Aww nikki that does sound like a rough day. :hugs:


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## Peanut78

Hi all, 

I've been travelling and not had time to catch up on posts!

I wanted to post this link (which I've already shared with Sarah) 

https://www.huffingtonpost.com/maria-lin/special-needs-parenting_b_1314348.html

A friend shared it with me who also has a child with special needs. Look beyond the very specific intro to her son/ issues and what it means to be a parent to a child with special needs - it really, really struck a cord with me - made me cry, but also feel better in that I am not alone. 

Will catch up with posts soon! :hugs:


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## sequeena

That really got to me, thanks P. I am so angry and bitter at times :(


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## essie0828

Same here :( It's hard not to be angry and bitter. :hugs:


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## Feathers

Hi ladies apologies for a longer absence. Sequeena I'm pleased to see Thomas doing so well after his operation! I have been trying to follow on FB when I've had internet access and fingers crossed his hand heals up well! I also read that article earlier and it's so true isn't it. I think feeling angry and bitter is just one of those things that goes along with children who maybe aren't quite the imagined norm! At least that's what I tell myself. That I am lucky compared to some people and it's okay to be bitter about things sometimes.

Portage has been going really well for her, we have a large list of targets but they are so relevant to her I can't help but feel hopeful that if she can achieve these things she will at least be a little closer to being caught up! Unfortunately we've had a few weeks of illness again. A UTI followed by another hospital stay whilst they tried to work out what was wrong (tonsillitis this time it turns out) which came on top of being in myself for possible early labour (it never rains it pours doesn't it!). It meant we missed halloween so little Miss had to dress up later when she was recovered and back at home, but she still had a good time. We seem to be hitting the point where she's getting frustrated now at not being able to communicate as well as most of her peers and it's resulting in more tantrums and some violent behavior (hitting, pinching, scratching, biting) which is difficult to deal with although fortunately it's mostly been aimed at me and her Dad so far. 

On the up side we have her MRI scan in 2 weeks! I'm a little nervous about the sedation for her, but I know it will probably be harder for me than for her and it's for the best as there is no way she can lie still for that!

I have to admit I'm at the point of pregnancy now where I'm starting to worry a little about baby #2. I mean my DD is perfect and I love her so very much, but there is no denying she was difficult from birth with feeding and breathing difficulties etc and I'm so hoping that this time is easier. Her being in hospital again really made me worry about how I will cope when her brother is here too. I guess all we can do is take it one step at a time. Anyway sorry for the rambling update! Hope all is well with everyone here!


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## nicki01

That post is so true, whilst me and Charlie don't face some of the challenges other mums and children do, we have our own challenges daily and I can still relate! 
I am blessed with a truely amazing little person but I do feel jealous and bitter alot of the time! Only last night I got into bed and cried for the first time since I've begun this journey, just a fear of the unknown at the moment, I have no answers, I don't know what the future will hold for Charlie, and what battles she will face daily and I guess its knowing what a cruel world we live in! I'm yet to see a different side as I've not long started along this road!


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## nicki01

Bit quiet in here! :wave:

Well my little Charlie bear is in nursery this afternoon so I went to see a bf counsellor about my worries with tori! 
Wasn't expecting to come out with a list :dohh:
She needs to see a chiropractor as she was a shoulder dystocia birth and apparently that could be the reason for her screams on feeding, also is 25% tongue tied, and has suspected cmpa/soya sensitivity, so ive to cut all that out of my diet :haha: that's going to be a whole load of funh!!

Oh and I have a slow let down and low supply! :dohh:

Lots of work to be started and more appointments to made over here!! :sleep:

Hope everyone is well, and just busy having fun with there little monsters! :cloud9:


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## sequeena

Oh man that is a lot, hopefully it will help though!

Finally got T's paediatrician appointment, it's on November 20th :) his first group speech therapy was yesterday. I was disappointed. It only lasted half an hour and the place has no pram access. The location is quite a distance away so I have to use the pram. I don't know, I just don't have a good feeling about this.


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## nicki01

Good news about the appointment! How silly about the speech therapy tho! You would think they would have access for wheelchairs etc! What did you do with the pushchair today?


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## sequeena

Oh nothing his appointment is once a week. I had to bump it up and down the steps, there's not a lot thankfully.


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## essie0828

:hugs: nikki. Hope breast feeding improves for you hun. Hope Charlie is well. :hugs: 

Sequeena the therapy sounds a bit short to me. Half hour with a group? It doesn't sound ideal but it is at least some time with other little ones and a therapist. Do you get to stay with him and the other moms during the session? I hope as the therapy gets along it helps and is worth the hassle. :hugs:


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## essie0828

Feathers you poor dear :hugs: Hope your lo is feeling better and hope bean decides to stay put for a little while longer.


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## sequeena

It's meant to be one hour but they cut it this week. There's 3 kids T is the youngest. We stay with them and getIinvolved. They have a theme each week and this week's was body parts x


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## essie0828

That actually sounds nice despite the absence of pram access. I learn TONS at DDs' sessions. I love it! She's picking up new words now and has started speaking to the therapist after about the 5th session:dohh: I kept telling them she was saying this and that at home but never any proof. FINALLY, last week she spoke and said "mo bub bub" (more bubbles) in front of just about everyone. Granny's included ;)


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## essie0828

Feathers said:


> Hi ladies apologies for a longer absence. Sequeena I'm pleased to see Thomas doing so well after his operation! I have been trying to follow on FB when I've had internet access and fingers crossed his hand heals up well! I also read that article earlier and it's so true isn't it. I think feeling angry and bitter is just one of those things that goes along with children who maybe aren't quite the imagined norm! At least that's what I tell myself. That I am lucky compared to some people and it's okay to be bitter about things sometimes.
> 
> Portage has been going really well for her, we have a large list of targets but they are so relevant to her I can't help but feel hopeful that if she can achieve these things she will at least be a little closer to being caught up! Unfortunately we've had a few weeks of illness again. A UTI followed by another hospital stay whilst they tried to work out what was wrong (tonsillitis this time it turns out) which came on top of being in myself for possible early labour (it never rains it pours doesn't it!). It meant we missed halloween so little Miss had to dress up later when she was recovered and back at home, but she still had a good time. We seem to be hitting the point where she's getting frustrated now at not being able to communicate as well as most of her peers and it's resulting in more tantrums and some violent behavior (hitting, pinching, scratching, biting) which is difficult to deal with although fortunately it's mostly been aimed at me and her Dad so far.
> 
> On the up side we have her MRI scan in 2 weeks! I'm a little nervous about the sedation for her, but I know it will probably be harder for me than for her and it's for the best as there is no way she can lie still for that!
> 
> I have to admit I'm at the point of pregnancy now where I'm starting to worry a little about baby #2. I mean my DD is perfect and I love her so very much, but there is no denying she was difficult from birth with feeding and breathing difficulties etc and I'm so hoping that this time is easier. Her being in hospital again really made me worry about how I will cope when her brother is here too. I guess all we can do is take it one step at a time. Anyway sorry for the rambling update! Hope all is well with everyone here!

Hope the MRI goes well. I'm sure to have questions 
or you afterwards. ;) We are thinking about going ahead with the MRI for Hayley sometime next year. The sedation is a concern, but DD was fine with the short sedation she had during the ear tube surgery. 

Hun I can understand being worried about coping with 2, Im still to chicken to go ahead and try for 2:haha: Hayley was difficult. Every newborn is for a bit, some for longer, but you got this :hugs: Honestly though hun, I would be crapping myself : scared if I were 35weeks pregnant right now. You're not alone there:haha:


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## Feathers

Oh well anything you want to know afterwards Essie just ask! I'm really hoping it doesn't show any brain damage I mean whilst it would be nice to have definite answers or labels or reasons for things, I think if they find anything it will be hard to accept particularly given this is pretty much the hospital's fault for their treatment during labour. 
Apparently having my c-section sometime week beginning 2nd December so under a month left!! I'm nervous about that too given what happened last time but at least I won't have the labour part this time around.


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## moggymay

Sequeena that sounds similar to something we did at T's age. The group sessions we to help the SLT's to get to know the children before they begin 1:1 sessions. Definitely worth it because with the limited funding these days it saves the 1:1 sessions for when he will get more out of them....you may find the group sessions help a little, they did for us, especially in realising we weren't alone and that there were plenty of folk rooting for my son to start to speak. The 1:1 sessions when we got them brought him on further, since then we have had to keep going with the techniques and games she played with him/taught him and us. His speech is now quite wide and varied, his pronunciation is weak as he doesn't use the hard consonants correctly when they're at the end of a word.....to hear him say Bee/Beak/Bean etc all sound the same Bee....we are working on it but he is progressing. The thing they say about turning 3 and turning the speech tap has been true for us....


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## sun

Sorry I haven't been popped in for a week! I miss so much - now I have to read back and catch up. Hope everyone is doing well. Both my kiddos have birthdays around now (daughter was last week and son is this week) so it's been busy. And so exciting that over the past week my daughter REALLY started copying words and trying to talk more. She is asking me what everything is! She isn't SN, but thought I would share as it's so exciting. My son never really went through a phase like that. Now to catch up on everyone and their LOs! xo


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## sequeena

Thanks moggy. Thomas has had 1:1 sessions so I don't see the point of these group sessions other than there not being enough money in the pot.

Happy birthday to both your kids sun!

Hope everyone is ok. Thomas fell a few days ago and broke his glasses so the optician is ordering him new lenses. 

He's been quite well behaved lately, he's still demanding but at least I'm not dealing with head banging tantrums 10+ times a day. He was so good when we went food shopping that I bought him a Thomas the tank engine magazine. 

Tomorrow I need to ring the hospital and get them to look at his cast. It smells so bad I think he's been putting food down there.


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## wantabean2

hey ladies sorry I haven't posted in a while.

so Cameron had an appointment today and after quick assessment he is waaay behind on his development and pretty sure he is on the AS. Finally gonna start to get some answers and support. pretty excited to get started tbh :) 

Cameron has had MRI and EEG so if anyone needs to ask any questions I can help :) 

hope your all well and happy birthday to all the little dudes and dudettes that have birthdays around now :) Camerons 3rd birthday is on Monday :0 how did that happen? lol 


xxx


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## RachA

I seem to be struggling to come in here at the moment. 

Hope everyone is ok. 

We had Esther's 6 monthly review last week. The good news is that she hadn't slipped any further behind :) so she is developing at the correct rate but she is still 18 months behind in her speech and understanding and around 12 months in her motor skills and social skills. We are pleased with this. It would if been nice if she'd of caught up a bit but that was a hope rather than a realistic aim. 
The other thing that came up from her review was the results of her genetic testing. Her tests showed that she is missing a bit of a cromosome (#2) and has an extra bit on her x cromosome. In view of those results oh and I agreed to be tested and apparently I have the same bit missing. This means that it's unlikely that this defective cromosome is what's causing Esthers delay as I developed 'normally'. We are being referred to a geneticist as we now need to find out if there are any long term issues resultant from her odd cromosomes. Apparently if we didn't get referred now at some point we'd have to go as Esther will have to be told there is an 'issue' with her cromosomes. 

Steps have also been started to get her statement underway. 

Generally she's doing well. She's adding new words daily but she still doesn't really use them which I find frustrating!


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## bumpin2012

Hi ladies, just checking in :)

nothing new to report, really. G is walking, still not talking, but making sounds. we have a pediatrician assessment on the 29th, and hopefully speech therapy in about a month.

May have good non child related news. hubby is military and we found out yesterday that he is probably being posted in June ( they are waiting for baby to be born) but it's looking like we're being posted to the prairies, within a 3 hour drive from my mama! Right now it's a 7-9 hour flight to visit, so I'm ecstatic, but worried how this will affect Gs progress.

bug is doing well too :)

hope everything is well.

Rach: hope your appointment with the geneticist brings some answers/ insight. I'm happy to read that she's continuing to progress :)

feathers: I'm starting to freak out about managing 2 also, and I've got until May! we can do this! ( Right?)


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## RachA

That's great news bumpin-when you are a long distance flight away then a 3 hour drive feels like nothing :)
You may find that moving doesn't hamper his progress at all. 


We have started looking a schools for Esther as we need to decide by the middle of January. We went to our first one yesterday. It's our catchment area school and we know that it is a good school anyway. It was interesting as we met with the head teacher and also the deputy who is also the special needs coordinator. We had to give a potted history if Esther and what needs she has. One thing that came out of the meeting was that Esther likes to watch other people/children and learns from that rather than being told what to do. She is a very visual person. Because of this we've realised that putting her in a school surrounded by children who don't use words to communicat really wouldn't help her at all. Sending her to a 'special needs' school wasn't something that I wanted to do anyway but it's something my mil has bought up on several occasions citing that if she goes to main stream schools she will be picked on!!!! I'm glad my gut instinct has been proved right. I'm not against 'special needs' schools as there are definitely children who need them but I've never felt this option to be one we should seriously look into. Whichever main stream school we pick will teach her in many different ways-sometimes as part if the class, sometimes on a total 1:1 and sometimes in a small group :)


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## sun

Rach - My son started at mainstream school in September and so far our experience has been mostly good. My son learns visually as well and really gets alot out of the interactions with the other kids at school. He also takes the school bus and LOVES it. The only issues we're having is that he can be very sensitive to things he sees and I (and the teachers) can't always figure out what is upsetting him. I know from experience that it could be something simple that he saw and interpreted a specific way, but he usually isn't able to verbalize or communicate the experience. But that would be a problem regardless of where he was. Mostly I am happy and he is learning so much. He even sang a song (the tune, not the words) which is something he never has done. Very exciting! :thumbup:

Also has anyone had their child assessed by a child psychologist? We just got a call for a referral next month and the appointment is 2h long! :shock: Not sure what they will be assessing or doing there.


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## sequeena

Hi everyone, sorry I've not been around I've been really busy. 

Sun Thomas hasn't been referred but he has just had a 2 hour appointment with his paediatrician and he was having exhausted. Good luck!

Thomas' cast came off yesterday :) he has a splint now for boisterous play which he'll wear for 3 weeks. His thumb looks good. He saw his paediatrician today. No melatonin :( he's being referred to a geneticist and another occupational therapist amongst other things. 

Thomas will start a sleep clinic in December.


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## sun

That's too bad about the melatonin - I know a few mums who find it really helpful (though their kids are older like 5 or 6)
Glad to hear he's starting a sleep study though - hopefully they'll be able to help. And yay to having the cast off! :D


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## bumpin2012

hopefully a sleep study will help you all get some sleep

we start speech therapy December 5th :)


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## sun

bumpin2012 said:


> hopefully a sleep study will help you all get some sleep
> 
> we start speech therapy December 5th :)

Wow at only 18mo! Can I ask what province you're in? Where I am it's a pretty long wait (like 9-12mo) from the point where they are first concerned, so most people we know started at 2.5 or so. We were in at 20mo, but B couldn't move his mouth properly or make sounds.


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## sequeena

Thomas was referred for speech therapy at 17 months and started at about 20 months. Good luck bumping x

We were also told he has hearing loss in both ears alongside glue ear. Why didn't anyone tell me!


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## sun

sequeena said:


> Thomas was referred for speech therapy at 17 months and started at about 20 months. Good luck bumping x
> 
> We were also told he has hearing loss in both ears alongside glue ear. Why didn't anyone tell me!

Did they recommend aids or treatment for him? Hearing properly might really make a difference. It can affect so many things - my friends 6yo was diagnosed with a learning delay/disability and after a year they found that his hearing was severely affected on one side and moderately on the other. He made HUGE improvements in several areas once it was treated. Seems crazy that they didn't mention it!


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## sequeena

We didn't get to finish as she had other appointments so I'll ask when i go back to audiology. She must have got it wrong surely they'd have told me.


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## bumpin2012

sun said:


> bumpin2012 said:
> 
> 
> hopefully a sleep study will help you all get some sleep
> 
> we start speech therapy December 5th :)
> 
> Wow at only 18mo! Can I ask what province you're in? Where I am it's a pretty long wait (like 9-12mo) from the point where they are first concerned, so most people we know started at 2.5 or so. We were in at 20mo, but B couldn't move his mouth properly or make sounds.Click to expand...


the wait list here is about 9 months. I had him put on the list before we had an identified issue. ( because I'm one of those crazy mama's) I had him assessed at 10 months because I was concerned about his development and our early intervention coordinator suggested getting him on the list, just in case. so I'm really glad I did it back then :) I'm in nova Scotia!


sequeena, I would think she has T confused with someone else. it seems odd that no one has mentioned this to you before...


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## essie0828

sun said:


> sequeena said:
> 
> 
> Thomas was referred for speech therapy at 17 months and started at about 20 months. Good luck bumping x
> 
> We were also told he has hearing loss in both ears alongside glue ear. Why didn't anyone tell me!
> 
> Did they recommend aids or treatment for him? Hearing properly might really make a difference. It can affect so many things - my friends 6yo was diagnosed with a learning delay/disability and after a year they found that his hearing was severely affected on one side and moderately on the other. He made HUGE improvements in several areas once it was treated. Seems crazy that they didn't mention it!Click to expand...

I second this. Hayley has made a vast improvement in her hearing and speech since getting the fluid drained from her ears and tubes put in. She also had moderate to severe hearing loss on her right side and inconclusive results on her left. The doctors told us that the ear will most likely repair itself over the next year and her hearing will continue to improve. Thomas is still young, it's so very likely that they can restore his hearing. Then be prepared for the new sounds and words ;).


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## essie0828

Hi to everyone! :hi: 

Lots going on here as well. My uncle is having open heart surgery Friday, Hayley isn't sleeping and it's general chaos. Blah. Hayleys therapies are getting demanding, each has it's own set of goals for us to accomplish each week. She sees 5 therapists! It's a lot some days. Ok that's my mini update. Hope to have a proper positive one soon ;).

Loving reading everyone's posts. :hugs: to all. Ok I'm exhausted and its nap time. See ya :)


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## aliss

sun said:


> Also has anyone had their child assessed by a child psychologist? We just got a call for a referral next month and the appointment is 2h long! :shock: Not sure what they will be assessing or doing there.

We had one two weeks ago here in QC, it was over two hours and basically we went through a million questions (from the DSM) and many questions they asked for elaboration. We actually just went me and OH, and then the follow-up is Monday with Alex. :shrug:

Bill was $525 :dohh:


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## sequeena

Ouch that's a big bill :(

Good luck to your uncle essie :hugs: poor hayley :( tThomas has had a lot this week - hv and sleep clinic consultation monday, cast off Tuesday, paediatrician yesterday, speech therapy and a blood test today and portage tomorrow and it's a lot for him.

Sean had his endoscopies today. They didn't sedate him so he wasn't happy. Turns out he has a n acid reflux disease and a valve in his intestines/bowels won't close fully and it lets gas out. Doctor says IBS.

We waited at the hospital for Sean and I had a phone call from Thomas' paediatrician. She was going to send the blood test forms in the post but as I was there I picked them up and Thomas had his blood test. He didn't feel the needle thankfully but did cry at the end as his arm took a while to stop bleeding. I also need to get a urine sample from him lol.

One thing my paediatrician did say is that Thomas' ears are lower than is normal and his eyes are deep set. She was reluctant to say more though. Sigh :(


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## Tiff

:hugs: Aliss! You know you can get reimbursed for that, right? :hugs:

Sorry I haven't been in here much lately. :blush: I find it hard at times, I love the support but when I feel overwhelmed with all of Claire's issues its hard for me to come on here and give support to other people... I also don't want to be that person that just comes on and whines about my own life and not bother with anyone elses. :blush:

But I think of all you ladies often and your gorgeous little kiddos. :cloud9:


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## Tiff

bumpin2012 said:


> sun said:
> 
> 
> 
> 
> 
> bumpin2012 said:
> 
> 
> hopefully a sleep study will help you all get some sleep
> 
> we start speech therapy December 5th :)
> 
> Wow at only 18mo! Can I ask what province you're in? Where I am it's a pretty long wait (like 9-12mo) from the point where they are first concerned, so most people we know started at 2.5 or so. We were in at 20mo, but B couldn't move his mouth properly or make sounds.Click to expand...
> 
> 
> the wait list here is about 9 months. I had him put on the list before we had an identified issue. ( because I'm one of those crazy mama's) I had him assessed at 10 months because I was concerned about his development and our early intervention coordinator suggested getting him on the list, just in case. so I'm really glad I did it back then :) I'm in nova Scotia!
> 
> 
> sequeena, I would think she has T confused with someone else. it seems odd that no one has mentioned this to you before...Click to expand...

You must not be in Ontario! :rofl:

Claire was flagged at her 2 year well baby check up. She got diagnosed (with help from our early intervention team) a month before she turned 3. We've been on the waitlist for ABA therapy/Speech Therapy since she was 2 and it'll start in February at the latest. She'll be FIVE in December. :wacko:

I cannot believe the waitimes for this province. :nope:


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## sun

Aliss - OUCH! $525! Yes I hope as Tiff says you can get reimbursed! Our appointment isn't private so we won't be paying. Not sure how it works in PQ though.

Tiff - What?? That is a HUGE wait! Absolutely the longest I've heard of by at least double! :shock: Completely unacceptable :nope: I've heard 1-2years, but never that long. That's so crappy that you've had to wait so long. Now I feel extra lucky we got in when we did. 

Sequeena - That sounds like a long week for poor T! Also I hate it when the docs are cryptic about their questions and comments :growlmad: I would much rather get an idea for what they're thinking than come home and google everything and freak out! xox


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## aliss

Yup we can thanks!!! But it's still a hard hit until the paperwork goes through :( private insurance. We are skipping the public system as the wait is still 24 months here in QC, I need an English-speaking team and they are very rare where we live :(


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## sun

aliss said:


> Yup we can thanks!!! But it's still a hard hit until the paperwork goes through :( private insurance. We are skipping the public system as the wait is still 24 months here in QC, I need an English-speaking team and they are very rare where we live :(

Are you still planning a move out west?


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## aliss

sun said:


> aliss said:
> 
> 
> Yup we can thanks!!! But it's still a hard hit until the paperwork goes through :( private insurance. We are skipping the public system as the wait is still 24 months here in QC, I need an English-speaking team and they are very rare where we live :(
> 
> Are you still planning a move out west?Click to expand...

I wish I wish, but it's quite a wait as OH has a gov't job and they are so reluctant to transfer him out of here as he speaks English very well :dohh: Friggin politics. I'm off to go join the PQ or Bloc and start my own referendum, then we'll get pulled out! The first Anglo in the Bloc!!!!


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## sun

aliss said:


> sun said:
> 
> 
> 
> 
> 
> aliss said:
> 
> 
> Yup we can thanks!!! But it's still a hard hit until the paperwork goes through :( private insurance. We are skipping the public system as the wait is still 24 months here in QC, I need an English-speaking team and they are very rare where we live :(
> 
> Are you still planning a move out west?Click to expand...
> 
> I wish I wish, but it's quite a wait as OH has a gov't job and they are so reluctant to transfer him out of here as he speaks English very well :dohh: Friggin politics. I'm off to go join the PQ or Bloc and start my own referendum, then we'll get pulled out! The first Anglo in the Bloc!!!!Click to expand...

:haha:


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## bumpin2012

Tiff said:


> bumpin2012 said:
> 
> 
> 
> 
> 
> sun said:
> 
> 
> 
> 
> 
> bumpin2012 said:
> 
> 
> hopefully a sleep study will help you all get some sleep
> 
> we start speech therapy December 5th :)
> 
> Wow at only 18mo! Can I ask what province you're in? Where I am it's a pretty long wait (like 9-12mo) from the point where they are first concerned, so most people we know started at 2.5 or so. We were in at 20mo, but B couldn't move his mouth properly or make sounds.Click to expand...
> 
> 
> the wait list here is about 9 months. I had him put on the list before we had an identified issue. ( because I'm one of those crazy mama's) I had him assessed at 10 months because I was concerned about his development and our early intervention coordinator suggested getting him on the list, just in case. so I'm really glad I did it back then :) I'm in nova Scotia!
> 
> 
> sequeena, I would think she has T confused with someone else. it seems odd that no one has mentioned this to you before...Click to expand...
> 
> You must not be in Ontario! :rofl:
> 
> Claire was flagged at her 2 year well baby check up. She got diagnosed (with help from our early intervention team) a month before she turned 3. We've been on the waitlist for ABA therapy/Speech Therapy since she was 2 and it'll start in February at the latest. She'll be FIVE in December. :wacko:
> 
> I cannot believe the waitimes for this province. :nope:Click to expand...


I have no doubt that if I had listened to our GP when she insisted I had nothing to worry about that we wouldn't be seen until closer to age 3. I made all my own referrals where I could, before we had a clear issue. we still don't have a definitive diagnosis, only a theory to explain his delays. because I have us seeing an ENT Dr at the children's hospital, I got him too make the pediatric referral, getting us in MUCH faster than if I pressed my gp.

it's insane how long the wait times are. it's about a full year for a developmental assessment here!


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## Tiff

Sun - I know, right? To be fair, the city I live in has exploded population wise... when I moved here in '99 it was 90,000 people... in 5 years it became 125,000 people and now its 135,000 people. It just grew far too fast for the services to keep up. There's a doctor shortage and most you speak to don't have a family physician. So it makes sense, but sucks for my poor kiddo. :/

I watched this video on FB and waittimes for children with Autism to get supports/therapies in place, I believe the shortest wait is actually in Alberta... 2 months!! :shock: Crazy and unheard of here!


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## essie0828

Tiff even here in the States the wait times for autistic kids seem longer. They are diagnosed later and treated later. At the outpatient therapy we attend a lot of the new kids are autistic and they are much older than DD. The youngest I have personally seen there being treated for autism was 3. That's a shame I think. :nope:


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## RachA

Sun-Esther's been referred to a psychologist (can't remember the type you said but it's the same type that Esther's referred to). I don't know anything about the process though. Esther's having to see them as part of the process to get a statement of educational needs. 



We've been to see all the schools for Esther now and we're still no clearer on where she should go. They all have good and bad points. I just wish the decision didn't lie with us. But then if it didn't I'd probably wish it did lol.


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## essie0828

Hooray for Esther going to mainstream school :happydance: I really hope she enjoys it and they offer her any help she needs. I'm sure you will make the right decision for her. :hugs:


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## essie0828

I just got Hayleys appointment in for a large regional children's hospital in a neighboring state. January 27th we will go to the CP Clinic there. It will be a long distance to travel but she will only have to go there a few times a yr. They will coordinate all her care remotely, working with her current therapists, and give us access to state of the art adaptive equipment. :happydance: There are no pediatric CP specialists in our state! Grr. But this place is the #3 children's hospital in the nation and they have 3 :happydance: And my uncle made it out of surgery and is off the ventilator.He's grumpy and groggy but himself enough to tell everyone to go home and sleep. My mom and grandma have been there for 2 days. They are exhausted. He had a heart defect and 36 years ago to save his life they put in a mechanical valve. You could hear it if you stood close to him, sounded like a clock ticking but it was his heart. He won't tick anymore as he now has a quiet animal valve. :haha: Besides being wore out it's been a good day. :)


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## sequeena

Oh that is such great news for hayley and your uncle! :dance:

Sean and I have decided against attending sleep clinic. We don't feel it's going to help seeing as Thomas has additional needs.


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## essie0828

sequeena said:


> Oh that is such great news for hayley and your uncle! :dance:
> 
> Sean and I have decided against attending sleep clinic. We don't feel it's going to help seeing as Thomas has additional needs.

What would they even be doing at sleep clinic?? Here the OTs work on sleep behavior with special needs kids and T already has OT. I think if you address his sleep issues with the OT they will help tons.


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## sequeena

It will be CIO based. He wouldn't have any comforts because they don't use 'props'. 

We will be going down the OT route. I don't know why it wasn't suggested to us before to be honest :dohh:


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## essie0828

I'm pretty excited about going to the CP clinic. I hope it becomes our home base of operation, lol. It feels like we are so scattered about with her specialists. 

Her receptive language has really blossomed recently and I'm hopeful for her cognitive abilities. She is coming along with the picture communication and chooses the toys she wants to play with in outpatient therapy by pointing at them. It's always bubbles first :haha: Her OT is helping us address feeding and biting issues, along with helping us to reach independence goals like self soothing, helping to dress herself, brush her hair, ect. They really break it down and go at each goal a step at a time. Love it! Hayley is starting to move her arms to help get into her shirts and coats. :cloud9: She stands independently with her heals down for up to a min. Her walking in a gait trainer is getting better and she has a good chance of walking on her own. She may need crutches and braces or a walker but the ability to step is there :cloud9: I'm proud of her :) She trys so hard.


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## essie0828

sequeena said:


> It will be CIO based. He wouldn't have any comforts because they don't use 'props'.
> 
> We will be going down the OT route. I don't know why it wasn't suggested to us before to be honest :dohh:

Oh no! I'm not a fan of CIO. I wouldn't do it either. OT will be much more relaxed, it's all about finding what stimulus does comfort him. Well besides sleeping on mom:haha: And reducing sensitivity to stimulus that bothers him or wakes him.


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## RachA

essie0828 said:


> Hooray for Esther going to mainstream school :happydance: I really hope she enjoys it and they offer her any help she needs. I'm sure you will make the right decision for her. :hugs:

Thanks. It kind of is but kind of isn't mainstream depending on the school. 2 that we looked at are 100% main stream but she would do a lot of small group work. The 3rd school we looked at has a special speech class that she would be in. This would be small group most of the time and then mix with the 'normal' classes sometimes. 

Really hope we make the right decision-it's so hard lol


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## RachA

It all sounds really good Essie :)


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## bumpin2012

Essie: that's fantastic progress! 

RachA: it sounds like the decision was made with a lot of consideration. I think you've made the right one :)


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## essie0828

Bumpin when you finding out if Gabe's getting a baby brother or a baby sister? You're getting so close to half way. :happydance:


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## essie0828

RachA the school I went to had smaller special needs classes that mixed in depending on the childs needs. There was very little bullying and the special needs kids integrated very well. I think, if we get the chance, I would like to do something like that for Hayley. I like the idea that if she gets overwhelmed with the social aspects that she can retreat into a smaller part of the population. I know that there will be days she's tired or sore and may want the comfort of a small class and more one on one attention.


----------



## bumpin2012

Essie, our ultrasound is booked for December 19th. they won't tell us during, but the radiologist forwards the report to my OB. She'll probably see the report on the 23rd. so we're getting it written down in a sealed envelope to open on Christmas day together :)

I was hoping hubby would want to stay team yellow, but he's pretty adamant that we find out.

it's insane how fast this pregnancy is going!


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## aliss

2nd is always fast, you don't get to sit around and daydream!! :) Plus you think more about the reality than nursery colours


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## essie0828

aliss said:


> 2nd is always fast, you don't get to sit around and daydream!! :) Plus you think more about the reality than nursery colours

:haha:


----------



## essie0828

bumpin2012 said:


> Essie, our ultrasound is booked for December 19th. they won't tell us during, but the radiologist forwards the report to my OB. She'll probably see the report on the 23rd. so we're getting it written down in a sealed envelope to open on Christmas day together :)
> 
> I was hoping hubby would want to stay team yellow, but he's pretty adamant that we find out.
> 
> it's insane how fast this pregnancy is going!

Lol, you better close your eyes during the ultrasound! That sounds like an amazing Christmas present. ;)


----------



## RachA

I really can't imagine finding out the sec at any time other than the birth. We were team yellow for both. Finding out wouldn't if changed anything as the nursery was always going to be bright primary colours. 
We very nearly wavered with our first and I'm so glad we didn't as I was dead set against having a boy. Then when we had him I was just glad he was ok cos I had a very dodgy birth and was close to loosing him. So knowing he was a boy when he was born didn't bother me lol. 


I think opening the envelope if Christmas Day is a really cool thing to do :)


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## bumpin2012

thanks :)

the reality of having 2 is certainly on my mind often... and I really wish it wasn't... Lol


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## aliss

I find two so much easier than one. Obviously in the beginning it's harder but it's well worth it. Sometimes emotionally it is difficult when you realize that your developmentally normal child can do things easier/better than their older sibling (they both said mama within 2 weeks of each other) but at the same time it is relieving that they can help each other out with things, such as physical or language development. 

Philippe is advanced beyond other kids physically and verbally while Alex is very behind due to autism but for some reason they are like a ying and yang to each other, it's hard to describe. I know you are probably nervous moreso than any other 2nd time mom, but I promise it is actually an amazing thing.


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## sun

I had the opposite experience as my son had a really hard time with his sister once she became mobile at 6mo. He balances towers of things around the house and organizes things very specifically, and she would crawl by and knock it over or destroy it. It was a huge issue for us and they still fight alot because of it as he wants everything just so and she couldn't care less. But it has gotten much better and they will now play together occasionally! He even started letting her touch him a few months back though it's still rare. The first 6mo were a breeze though as he just ignored her.


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## bumpin2012

lol..oh dear Sun! That sounds like a frustrating thing!


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## essie0828

Sun have you found out the sex #3 yet??? :). 

RachA there's no way I could wait to find out. I am too impatient. :haha: I knew with DD at 14weeks!


----------



## sequeena

Does anyone feel like they put people on a downer? I see threads on here about what's normal at what age, what our kids are doing at a certain age etc and I reply to them but I do worry that people don't like when I comment because of T's problems.

I dunno, just seems to be a vibe I'm getting recently :(


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## aliss

Maybe we are the pink elephants in the room and people just don't know what to say.

All I want to yell is DON'T PITY US!!!!!!!!! Seriously, not bitter. Just because my 3.5 year old can't talk doesn't mean you should be ashamed if your 2 year old does!


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## sequeena

aliss said:


> Maybe we are the pink elephants in the room and people just don't know what to say.
> 
> All I want to yell is DON'T PITY US!!!!!!!!! Seriously, not bitter. Just because my 3.5 year old can't talk doesn't mean you should be ashamed if your 2 year old does!

Yes exactly :thumbup:

Though I'm not ashamed to admit I have gotten very upset (irrationally) that kids younger than Thomas are doing things he is nowhere near to doing. I just have to remember that he is getting the extra help he needs and there is a light at the end of the tunnel.

As I type this he is pretending to unlock our living room door with our house keys so he does pick stuff up :)


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## sun

essie0828 said:


> Sun have you found out the sex #3 yet??? :).
> 
> RachA there's no way I could wait to find out. I am too impatient. :haha: I knew with DD at 14weeks!

Yes we found out it's a boy! :thumbup: Thanks for asking xo
My son is soooooooo excited about a little brother :D


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## sequeena

Thomas has been awarded DLA :) what a weight off my shoulders! !


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## Feathers

Hi ladies! Might be the last time I check in for a few weeks as baby is due next week! We have our c-section a week Friday!

Awaiting the results of the MRI! Scan day was a nightmare. We went in just fine at lunch after fasting, Olivia was given her sedative and...fought it. Cue two and a half hours of screaming! She missed her scan slow and was literally in the last ten minutes before no scan that she finally dropped off to sleep. And...woke up as soon as she was placed in the scanner! Luckily she laid still and her Dad held her hand (couldn't go in there as pregnant) and they managed to get the scan done! Anyway I'm glad it's over and they said by the time we see the consultant next the report will be in!

I'm currently in the process of changing her nursery to one where they are more equipped to deal with development delays and speech issues. She was so excited when we visited and didn't want to leave so I'm hoping this will be for the best for her so she gets the best support she can on her nursery days. Portage has been going...variably. She's so up and down that the twice daily homework is sometimes such hard going! But the portage targets themselves are fantastic and she enjoys it lots. I've seen some improvements too! She can now do a form board jigsaw on her own and is beginning to match a couple of colours! Any progress is good progress! We seem to be having a little speech plateau though, she's not trying to talk as much at the minute which is a shame. 

Congratulations to the other expectant Mums and Sequeena that's great news! I'll catch you all post baby #2! Fingers crossed for a smoother delivery and start this time!


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## bumpin2012

Sun: congrats on a boy!

Sequeena: Yay!!! (PS - whats DLA?)

Feathers: glad you got the scan done! and good luck with your section next week. Post some pics for us when you get a chance :)


We just got home from a VERY long afternoon at the childrens hospital. We saw a pediatrician today for a complete history and exam. While she is happy to see that there has been some progression in his development over the past few months, she still wants us to go for a complete developmental assessment, and also to be assessed by a geneticist. She had some concerns over his "overly friendly personality, lack of stranger awareness, and that his forehead is wider than his face." Which is fine, I don't mind going for the assessments, but we are moving in 7 months, and the wait list for those services is more like 9-12 months. Hoping that they will be able to squeeze us in before we move, and if they feel that G needs to be followed they can facilitate a referral to someone in Regina.

So little man missed his nap, then had to have some bloodwork done, and on our way out, the elevator got stuck and we were stuck in there for half an hour. Have I mentioned that hubby is claustrophobic? Or that my toddler was EXTREMELY cranky?

Mama needs a drink! (which I wont be having...sigh)


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## sequeena

Feather good luck with the MRI and c section!! Can't wait to see baby pics on facebook :D

Bumpin DLA is Disability Living Allowance, a disability benefit in the UK. It's so silly but now he has this I feel like he's finally been recognised as disabled. It's stupid really.

Ah what a nightmare with the lift :( I'm claustrophobic too. I've got better since having Thomas as you have to get in lifts more often but man I am always anxious until the door opens.

Good luck with the assessment and geneticist. Your LO is similar to mine. He is way over friendly with no stranger danger - something his OT (for his thumb, we've been referred to another OT too) pointed out could be a sensory issue. It's like he's not getting enough sensory output or satisfaction so he goes way overboard to feel things you know? Same as with his violence. T also has abnormal facial features and a large forehead. I do believe he has a genetic condition because of family history but I'm hoping for the all clear!


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## bananabump

Hi Sarah! I came on here today for a read and this thread was the first on the list so I've had a good read! Really happy for you that your DLA claim was accepted. I don't really know where to start with describing Leo! I'm feeling so overwhelmed by everything at the moment that being able to pop on here for support would be great. To cut a long story short he is 27 months old and was born with something called Symbrachydactyly which means the fingers on his right hand didn't develop properly and the palm of his hand aswell as his arm are shorter than his left. We weren't aware of this during pregnancy so it was a big shock and we have had a LOT of hospital appts in the last couple of years. First of all we had genetics testing which came back clear. Then he had two operations to help his hand function better. Then he was referred to the craniofacial team because he had a big head and plagiocephaly. At 10 months old he developed a skin infection called staphylococcus scalded skin which was horrific and he was in hospital for 8 days (not including the week before that we were in and out of a+e because they kept saying it was just a virus until it got to the point where he looked sunburnt all over his body and his skin was sliding off in sheets!). While he was in hospital they picked up a heart murmur so we were then referred to have his heart checked out. They found an abnormality in the way his heart was beating and said it would either correct itself or he would need an operation. Thankfully when he had his check up 9 months later his heart was absolutely fine! He's also had two febrile convulsions so had to see a paed at the childrens hospital in case it was linked to an underlying condition which they don't think it is. We had a few months where everything seemed 'normal' but we've recently found out he's got to have another operation in his hand in Jan because there's a bit of bone where there shouldn't be and it could be causing him pain! And after our two year review a couple of weeks ago with the HV, Leo has now been referred for a hearing test and developmental assesement with early intervention because he's not talking, can only say a handful of words and is showing autistic traits and signs of verbal apraxia! Ok so I may have rambled on and not cut a long story short but it feels good getting it all off my chest lol We've been on such an emotional rollercoaster in a short amount time that I feel totally drained but I know one thing for sure... I would NO WAY change my gorgeous little Leo cub. He's the best thing that's ever happened to me and if people want to stare, make nasty comments and judge him/me/my husband then I pity them and feel sorry for then.. not Leo! 

I hope everyone is well. Apologies for the lack of paragraphs lol xx


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## sequeena

Hello Emma!! Leo is a gorgeous boy!!

Me and Emma actually met up at the end of September with a few other mums at Thomas Land. It was a great day and our boys got on so well. It was so nice to meet someone who is going through similar (Thomas had polydactyly that wasn't picked up).

I hope you get lots of support here hun I have. Are you able to go down the DLA route with Leo? x


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## essie0828

Feathers :hugs: Good luck next week hun! Looking forward to seeing a few pics of the new addition ;). It's so crazy that it's time already! 

Sun that's so sweet that your kiddo is excited about a little brother. I bet they will be best friends. 

Sequeena Yay for DLA! I still haven't submitted Hayleys' paperwork :dohh: I'm so glad to see that he's getting extra OT. It's awesome! I love how much it's helping DD and I think T will keep surprising you as he works out his sensory issues. :happydance: Smart boy for taking keys to unlock the door! He will be locking you out soon :haha: Hayley opened a bedroom door at my moms today. That's a first for us :cloud9:

Hayleys braces are here!!! She's having to go slow at getting used to them but I am so very hopeful she will walk. They are SMO/AFO combination and they are really multi purpose. Finding shoes to fit over them is a hassle though. We've ordered Hatchbacks but they are on back order for Hayleys size :( Also I've read that Hatchbacks are quite heavy and clunky. I'm afraid DD isn't strong enough to move well with all that extra weight. Going to some shops later to try and find a good fit, any of you ladies have some suggestions for a good shoe to go over AFOs?


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## essie0828

Hi bananabump :hi: Leo is a doll!


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## essie0828

Feathers said:


> Hi ladies! Might be the last time I check in for a few weeks as baby is due next week! We have our c-section a week Friday!
> 
> Awaiting the results of the MRI! Scan day was a nightmare. We went in just fine at lunch after fasting, Olivia was given her sedative and...fought it. Cue two and a half hours of screaming! She missed her scan slow and was literally in the last ten minutes before no scan that she finally dropped off to sleep. And...woke up as soon as she was placed in the scanner! Luckily she laid still and her Dad held her hand (couldn't go in there as pregnant) and they managed to get the scan done! Anyway I'm glad it's over and they said by the time we see the consultant next the report will be in!
> 
> I'm currently in the process of changing her nursery to one where they are more equipped to deal with development delays and speech issues. She was so excited when we visited and didn't want to leave so I'm hoping this will be for the best for her so she gets the best support she can on her nursery days. Portage has been going...variably. She's so up and down that the twice daily homework is sometimes such hard going! But the portage targets themselves are fantastic and she enjoys it lots. I've seen some improvements too! She can now do a form board jigsaw on her own and is beginning to match a couple of colours! Any progress is good progress! We seem to be having a little speech plateau though, she's not trying to talk as much at the minute which is a shame.
> 
> Congratulations to the other expectant Mums and Sequeena that's great news! I'll catch you all post baby #2! Fingers crossed for a smoother delivery and start this time!

Sorry she had a rough time with the MRI :hugs: I'm afraid DDs reaction will be similar. After getting tubes in her ears she cried hysterically for what seemed like forever. I'm almost sure she wasn't in pain(had been given pain meds), so I think that was just her reaction to the sedative. That's still months away for us though. 

Yay for puzzle solving! :happydance: That's great! I hope she loves her new nursery and learns tons of new things:happydance: Btw Hayley will stall out with her speech at times that she is progressing in motor skills. Like now she is really concentrating on getting around and she's been quiet for a few days. Mabey your DD is just honing those fine motor and problem solving skills ;) :happydance: And oooh, oooh not to mention there will be a new squishy little man hanging out with you guys!:yipee: What's the princesses take on getting a baby bro so soon?


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## essie0828

7 days!


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## 24/7

Thought I would dip in here, so :wave:

Sam my 2yo is very behind with his speech although making progress now. He has been assessed by a developmental paed following a request from SALT as he showed some ASD markers, and they have discharged him for now, but sometimes I still wonder if they made the right choice...

Sun, Sam is exactly the same with Abigail and in the last six months has never willingly touched Abigail. I sense life will get much harder once she is on the move as she adores him, and although up to now he has ignored her, he wont be able to when she is following him around!


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## RachA

Wow such a lot goes on in here in such a short amount of time lol


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## essie0828

:hi: Ladies

Cold and flu season has found us :( DD and I have been sick for almost a week now. Blah. I spent the night in the bathroom throwing up and DD barely slept. Rough night! Cancelled therapy, fully intend to watch movies, eat chicken soup, and cuddle with the sweetest baby girl in the world.


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## essie0828

RachA said:


> Wow such a lot goes on in here in such a short amount of time lol

:haha: It has been quiet.


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## essie0828

24/7 said:


> Thought I would dip in here, so :wave:
> 
> Sam my 2yo is very behind with his speech although making progress now. He has been assessed by a developmental paed following a request from SALT as he showed some ASD markers, and they have discharged him for now, but sometimes I still wonder if they made the right choice...
> 
> Sun, Sam is exactly the same with Abigail and in the last six months has never willingly touched Abigail. I sense life will get much harder once she is on the move as she adores him, and although up to now he has ignored her, he wont be able to when she is following him around!

Hello dear :hugs: Welcome :hi:


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## sun

24/7 said:


> Thought I would dip in here, so :wave:
> 
> Sam my 2yo is very behind with his speech although making progress now. He has been assessed by a developmental paed following a request from SALT as he showed some ASD markers, and they have discharged him for now, but sometimes I still wonder if they made the right choice...
> 
> Sun, Sam is exactly the same with Abigail and in the last six months has never willingly touched Abigail. I sense life will get much harder once she is on the move as she adores him, and although up to now he has ignored her, he wont be able to when she is following him around!

Hello! :hugs:
Yes I have had lots of issues with him and his sister, but things are better now than they have been. He doesn't like her too close (especially touching or hugs which she loves), but they actually play together almost daily for short periods. Their shared interest is running around the house pushing something and yelling 1-2-3-go! Race! :haha: We hit a tough period when she became mobile and got into his stuff (which he organizes very carefully). Then it got better for a bit. Then it got worse again when she hit a tantrum age and would get mad at him for not sharing and hit at him or yell or try and grab at what he's playing with. Or she likes to make him mad by chasing him trying to give him a hug lol. It is still like this, but they also play together which makes me so so happy!

So happy to hear Sam is making progress with the speech! :thumbup: We still see our dev.ped. every 9mo to check in and reassess possible ASD, but we don't have any formal diagnosis other than the initial GDD. I think for us that's good, as 50% of the time I'm not sure that he isn't just a quirky kid. I'm sure that 30 years ago he wouldn't have been flagged for anything but the initial delay. But then we have those ongoing meltdown/totally irrational behaviour days that have me rethinking everything. Hugs to you!


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## sun

RachA said:


> Wow such a lot goes on in here in such a short amount of time lol

I feel the same way! If I'm gone 3 or 4 days I feel like I can't catch up at all! :haha:


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## 24/7

Sam and bun sound virtually identical! When we have good days I feel sure he is fine, then on a bad day I worry a lot. His pre school have no real concerns at the moment though, aside from his speech, so that's positive. He is very quirky, and plays just like bun. xx


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## bumpin2012

welcome 24/7

Essie: hope you feel better soon... I'm the sickie in my house, and G won't cuddle! he's too darn busy

we have our initial appointment with the geneticist tomorrow... more bloodwork :( and I'm hoping nothing shows up. or at least if there is something, it's really minor. it's strange, but I feel very uneasy about all this testing.


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## sun

bumpin2012 said:


> welcome 24/7
> 
> Essie: hope you feel better soon... I'm the sickie in my house, and G won't cuddle! he's too darn busy
> 
> we have our initial appointment with the geneticist tomorrow... more bloodwork :( and I'm hoping nothing shows up. or at least if there is something, it's really minor. it's strange, but I feel very uneasy about all this testing.

Yes we declined the genetic blood work after the initial testing (for things like fragileX, etc). The tests were very stressful for him and if they had by chance found something (but they were pretty sure they wouldn't) then it wouldn't really change anything. So we decided not to do it.


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## sequeena

I am the opposite, I am keen to see what, if anything to shows up in the genetic tests. I wonder how long it will take for this blood test to come back. I still can't get a urine sample from him and the hospital have stopped giving out the pads and syringes :(


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## bananabump

When Leo had his genetics blood work done it took about 3-4 months before we got the results x


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## sequeena

bananabump said:


> When Leo had his genetics blood work done it took about 3-4 months before we got the results x

Oh typical, there was me thinking a week or 2 :rofl:


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## bumpin2012

I wonder what the wait time here in canada will be. that will be something that I will be asking about tomorrow. hubby is also very keen... strange, because its be a struggle to get him on board with every other assessment. :shrug: it worries me, because if there is something there, im going to worry about the impact on the baby thats baking, as well as G's future. it never occured to me that Bug may also have the issues that G has.


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## bumpin2012

sequeena: how long have gou been waiting?


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## sequeena

About a week and a half :)


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## sun

bumpin2012 said:


> I wonder what the wait time here in canada will be. that will be something that I will be asking about tomorrow. hubby is also very keen... strange, because its be a struggle to get him on board with every other assessment. :shrug: it worries me, because if there is something there, im going to worry about the impact on the baby thats baking, as well as G's future. it never occured to me that Bug may also have the issues that G has.

Our standard genetic testing came back in about a month. The more intensive testing (that was to test for rare genetic issues/deletions etc - which I think is what you're referring to) would have taken a few months.


----------



## justhoping

myself, my 18 yr old daughter and my son...

I am in the autism spectrum..

I used to rocked back and forth and flap my hands for hours on end. I forgot about the flapping hands..my mom just reminded me.i wouldnt let anyone touch me and till this day have to remind myself that its ok, I had problems looking in peoples eyes and to this day still have problems doing that at times. Texture where hard for me as well and still are...I would be in a dream world and literally have to be shaken out of it..not normal day dreaming and i was several speech delayed but not speech therapy back the, im nearly 42..i did have alot of therapists working with me...an school worked with me..

I am now with alot of work a nurse :) Damn proud of it as well...:)
Just telling you because i know you all worry what will the future bring for my little one..
well with support it can bring wondrous things :hugs:

my daughter speech delayed, wouldnt look into eyes, always preferred not to interact and delayed with learning..
couldnt explain what she was thinking in order when she did speak and you really had to break stuff down for her to get it...textures and loud places where hard for her....and most kids felt how awkward she was...i used to cry so much over that....
she did get left back one yr but has finally graduated high school and is now in college as disabled so she is allowed certain help that most dont use and has an aide as well..she also has repeated words since about 2..still does at times.

my 6 yrs old.....was talking 18 words at 1 yr and then all the sudden stopped talking...couldnt express himself....so he had speech and ot therapy and he also doesnt like alot of interaction..doesnt like to be touched much..but is not as severe as myself and my older daughter..

its a long road but anything is possible and these kids are the most loving kind hearted kids around...
to me nothing is really wrong :)

xx


----------



## essie0828

Bumpin hope the tests go well :hugs: and hope you feel better to hun. Hope you get good news FX'd. 

Sequeena hope the wait isn't long for you and T. FX'd for good news. 

We have Hayleys eye check up tomorrow to see how the patching has helped. Hopefully surgery is still off the table and her eye muscles have gotten stronger.


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## essie0828

justhoping said:


> myself, my 18 yr old daughter and my son...
> 
> I am in the autism spectrum..
> 
> I used to rocked back and forth and flap my hands for hours on end. I forgot about the flapping hands..my mom just reminded me.i wouldnt let anyone touch me and till this day have to remind myself that its ok, I had problems looking in peoples eyes and to this day still have problems doing that at times. Texture where hard for me as well and still are...I would be in a dream world and literally have to be shaken out of it..not normal day dreaming and i was several speech delayed but not speech therapy back the, im nearly 42..i did have alot of therapists working with me...an school worked with me..
> 
> I am now with alot of work a nurse :) Damn proud of it as well...:)
> Just telling you because i know you all worry what will the future bring for my little one..
> well with support it can bring wondrous things :hugs:
> 
> my daughter speech delayed, wouldnt look into eyes, always preferred not to interact and delayed with learning..
> couldnt explain what she was thinking in order when she did speak and you really had to break stuff down for her to get it...textures and loud places where hard for her....and most kids felt how awkward she was...i used to cry so much over that....
> she did get left back one yr but has finally graduated high school and is now in college as disabled so she is allowed certain help that most dont use and has an aide as well..she also has repeated words since about 2..still does at times.
> 
> my 6 yrs old.....was talking 18 words at 1 yr and then all the sudden stopped talking...couldnt express himself....so he had speech and ot therapy and he also doesnt like alot of interaction..doesnt like to be touched much..but is not as severe as myself and my older daughter..
> 
> its a long road but anything is possible and these kids are the most loving kind hearted kids around...
> to me nothing is really wrong :)
> 
> xx

Hi :hi: Welcome and thanks for sharing your story.


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## bumpin2012

Thanks Essie :) poor little guy Hayes being blood drawn. he's a 4 person job! I'm amazed at how strong he can be... they figure it's going to be a few months before we have any results, and if anything comes up they will be referring us to a geneticist in Saskatchewan when we move. 

hope things go well for Hayley's checkup. :)


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## Peanut78

Deleted


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## justhoping

oh wow, sounds like they know what is wrong but cant be bothered...shame on them!!

why shouldnt he be in mainstream, expecially if he does to all those things in the other school and at home, to me it sounds like there letting him go aimlessly cause they couldnt give a rats ass to give him a gentle nudge of love...

i would be complaining to whomever it is that needs it as this is her child, he deserves what all other children get..

can she sit in on some classes and see what is exactly going on? Maybe then show them how to deal with it or if she is in the class it will make them deal with it..


my heart goes out to her <3

I know she doesnt know me but please send my hugs


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## essie0828

:hugs: peanut 

I agree with justhoping. I would be asking to sit in and see what exactly is happening as his behaviour is uncharacteristic. Hopefully someone at the school will take up the job of helping him adjust. Mabey try getting a teacher to take special intrest in him. I know it's easier said than done but it may be worth a shot. I hope you both find a place that Theo is comfortable and prospers. :hugs:


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## sequeena

Hey sweetie I'm glad you posted here too :hugs: I would be demanding to know what they're going to do to resolve this. If he's fine at home I doubt it is your problem tbh. It's their responsibility to look after every child in their care and make allowances for their 'differences'.

I hate that a lot of attitude towards our children will be to just give up on them as they'll never 'learn'. Well no. We're there fighting their corners :thumbup:


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## sun

Peanut :hugs: 
I have found that amazing programs and teachers and assistants exist out there, but also that there are huge holes in some areas where our kids can get lost. Even within the same school where one year it is fabulous and next the teacher just has no idea what to do or sees the child as a "problem child" and basically just tolerates them until the year is over. So sorry you are dealing with a school like this. Have you spoken to the directors of the school, or the people in charge of special needs for the school or board? I can't quite remember the details of what I read last night (didn't have time to respond) but I would definitely start there. We've only been in full time school for 3 months now and already I can see how much of an effect a positive (or negative) school experience can have on a child. I recently took my son out of school for the afternoons because the full days were too much and the afternoons with so many kids was just overwhelming. It's only been 4 days and he's already happier. The school doesn't like us "making our own hours" but they are talking from an overall policy and group organization point of view, whereas I am only focused on providing my son with the best experience possible. So I have decided I will do what is necessary and be one of "those" mothers if I have to. Please don't think it is your son's or your fault! You all have to work together and if they aren't willing to do their part then it won't work. Hugs to you xox :hugs:


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## justhoping

^^ definitely what she just said...

I wouldn't be where I was if everyone didnt work together..they maybe telling you there working together but obviously there a link in the chain missing. my daughter also wouldnt be where she is now if we all didnt work together..She got left back BECAUSE a teacher kept saying she would be doing what she was supposed to be doing with her but later found out, that was not true at all. 

(hug)


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## RachA

bumpin2012 said:


> welcome 24/7
> 
> Essie: hope you feel better soon... I'm the sickie in my house, and G won't cuddle! he's too darn busy
> 
> we have our initial appointment with the geneticist tomorrow... more bloodwork :( and I'm hoping nothing shows up. or at least if there is something, it's really minor. it's strange, but I feel very uneasy about all this testing.

Esther had a blood test done for the geneticist and it came back showing something odd. I wasn't 100% happy her having it done but now the results have come back (oh and I were tested and I show the same abnormalities) I feel ok with it. We have been referred to the geneticist to talk through the results but the waiting list is huge so the talk won't happen for 12 months +


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## bumpin2012

wow! 12 months to TALK about the results! my mind can't even process that! 


peanut, I didn't get to read your post before it was deleted, so I have no advice, but still sending virtual :hugs:


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## sequeena

Welcome to the world of the NHS :) it's wonderful but the waiting list can be astronomical.


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## xprincessx

thought i'd dip my toe in here...

callum has autism, severe speech delay, severe sensory issues and anxiety (especially about cleanliness!)


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## essie0828

:hi: princess. Welcome :)

Got good news from the eye doctor. The patching has helped Hayleys' eyes and she doesn't need glasses so far. The doc did say she was a tiny bit far sighted but she wants to try 4 more months of patching. Lord knows I could do without that fight every day :wacko: but it's working and we will keep at it. DD impressed me and her ST today. Her receptive language is getting way better and she is following directions, when she wants:haha: She picked out all of the household objects correctly in her game today. Chair, table, clock, phone, fan, and lamp. I didn't know that she knew these words. The little eavesdropper :). So she is picking up new words but she still can't say them. She's trying so hard though, I'm proud of her.


----------



## RachA

bumpin2012 said:


> wow! 12 months to TALK about the results! my mind can't even process that!
> 
> 
> peanut, I didn't get to read your post before it was deleted, so I have no advice, but still sending virtual :hugs:

I know - it's ridiculous. But the results don't mean there is anything the matter with her so I think that's why they aren't rushing. If the results showed up some syndrome or other than we'd see someone sooner.


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## sequeena

Essie that's fab!!

Hi Princess :wave:

So we finally started portage on Wednesday. His worker left a basic shapes puzzle and some lacing stuff for him as 'homework'. He can confidently do the shape puzzle :thumbup: when he first started he was using the process of elimination to fit the shapes in but he remembers them now and points them out to me before he puts it in :) he still has trouble fitting the diamond and moon though. He can't quite figure out that he needs to turn it.

The lacing he's not been so great at but today he did really well. I'm really pleased with his progress :)


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## RachA

That's great Sequeena, glad it's working well for you :)


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## essie0828

Yay for Thomas! Wtg for working out his shape sorter:thumbup: DD can only do the circle so far. 

RachA 12months is a crazy wait but I think you are right, if it was something really bad they would have you in right away.


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## bumpin2012

Sequeena! Thats great that he's doing so well with shapes! G has ZERO interest in that box of shapes...lol... my dogs, however, LOVE to chew them to bits (grrrrr.....)

Essie: Sounds like some good progress overall!

Welcome princess :hi:


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## sequeena

My boy is a lot older than your children so he has time on his side, they'll soon get there.

Also, Thomas signed more last night:dance:


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## essie0828

sequeena said:


> My boy is a lot older than your children so he has time on his side, they'll soon get there.
> 
> Also, Thomas signed more last night:dance:

Yay!! Go T! :happydance: Just wait he will be wanting "more" of everything:haha:

When DD first started using more sign we would reinforce it with whatever she wanted to get her to stick with it. So she would see me with the tablet, she would look at the tablet and sign more, mom would hand over the tablet. Well she threw a super tantrum in the kitchen because mom wouldn't hand over the butcher knife even though little princess signed more. :haha: There's no reasoning with that girl if she really wants it. We're working on "I want", "play" and "all done" now. No real success with those yet. It's so lovely to read about all this progress. All the little guys and gals are coming along. :thumbup:


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## essie0828

Peanut how is your situation going?? Have you been able to speak to his teachers? I hope things are getting better :hugs:


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## essie0828

Had DD at the doctor again today and she has a sinus infection. Poor thing. She did something really cute while we were there. She kept going to the door with her dad and saying "bye, bye". I swear she was telling us she wanted OUT of there :haha: Poor kid has been poked and prodded so much she can spot a white coat and scrubs from a mile away and tries to escape. I don't blame her either. Hopefully the meds will fix her up and she will feel well enough to sleep through in her crib. Mama is tired! Off topic but my phone informed me my period is late and I can't even remember the days we dtd :wacko: I was thinking we abstained during the fertile week but I really cant remember! Gonna wait it out a little bit and see what happens. I'm a little too freaked out to poas. :wacko:


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## justhoping

SORRY UR WEE ONE is sick.....and i hope you get the answer you wish about the late period hun

xx


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## bumpin2012

ooops... Essie! Are your cycles generally bang on? If they are, I'd POAS!

Hope little one starts to feel better quick!


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## essie0828

Yeah my cycles are regular now but I have had irregular periods in the past. I'm hoping I'm just a little late because I've been sick and stressed out. Wouldn't mind having another baby but I want to wait a few more months for health reasons. I have to start keeping track of this stuff. :dohh:


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## essie0828

Lol. DH brought home tests! He's a little worried to it seems:wacko:


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## essie0828

BFN this morning and still no AF :wacko:


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## bumpin2012

Hopefully it's just stress related... Lol... af being late probably isn't helping


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## sequeena

Good luck Essie, hope you get the result you want :)

Poor Hayley :( 

A good turned into a nightmare. We went to a playgroup Christmas party and Thomas had so much fun in the bouncy castle and he LOVES the gift 'Santa' gave him! The only blip was that he didn't like the feel of the sponge the face painter there was using so instead of being a tiger he has a rather large orange blob on his forehead :) However, a 40 minute for a bus (which never arrived) made him hysterical. Nothing I did would calm him :(


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## essie0828

Aww T's a trooper. If someone were to try painting Hayleys face, with anything she, would have busted the doors down :haha: Sounds like a horribly stressful time for mun though. 40 min straight of a toddler tantrum would unnerve a saint! I'm sure T will grow from the experience though, even if it tested his boundaries some. 

Well girls still perplexed on this no AF situation. BFN this am with FMU. Thinking AF my come in a little while.................and off in limbo land I go. Pffftt.


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## aliss

What do you do on those days you are always seeing kids the same age as yours who are walking and talking and sitting and laughing and.......... normal??? Kinda feeling bummed today. Got some good news at least, apparently now that we have our formal autism diagnosis, we get retroactive disability from birth (which is great b/c I haven't been able to work as the daycares kept booting him out, they couldn't cope).


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## sequeena

Aliss I'm having one of those days. I smile rather forcefully and have a cry when I'm alone.

I'm so glad you're getting disability, does that mean you'll have a rather large back dated payment? Bet that extra money will help SO much.


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## aliss

sequeena said:


> Aliss I'm having one of those days. I smile rather forcefully and have a cry when I'm alone.
> 
> I'm so glad you're getting disability, does that mean you'll have a rather large back dated payment? Bet that extra money will help SO much.

I'm sorry you are having one of those days :hugs: If only you weren't so far away I'd have a coffee with ya :dohh:

Yeah I have no idea how much $ it is but it's about 42 months....!!!!!! holy cow!!!


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## sequeena

I'm amazed they're actually back dating it that far but how great!!

It is a real shame none of us are closer, I don't know anyone in real life who has a child similar to mine.


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## aliss

sequeena said:


> I'm amazed they're actually back dating it that far but how great!!
> 
> It is a real shame none of us are closer, I don't know anyone in real life who has a child similar to mine.

Yeah pissing myself, totally unexpected eh?!?!

I do ironically know a girl whose son is just like Thomas but she lived by me, and not you :rofl: Oh dear. She moved away back home.

Having a disabled child + expat = SUCKS

I can't wait to leave. I spent 2 hours with a psychologist today and understood maybe 10 sentences. FML.


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## sequeena

I have no idea how you deal with the language barrier, I'd be tearing my hair out. Do you have a date for when you move?

Ah yes I remember you saying before, what a shame :( I need to get to the disability play groups but with his therapies and the cost of travel I can't afford to be going here there and every where :(


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## essie0828

sequeena said:


> I'm amazed they're actually back dating it that far but how great!!
> 
> It is a real shame none of us are closer, I don't know anyone in real life who has a child similar to mine.

Hayley is the only confirmed CP case at the rehabilitation hospital we go to and I don't know anyone else with a child similar in development either. It's really isolating sometime


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## essie0828

Aliss yay for backdated disability. Crossing my fingers for the same thing but certainly not holding out any hope. Our system is quite different and difficult.


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## bumpin2012

:happydance: we have a word!!! "doggie" hes following the dogs saying it over and over... Lol

ultrasound today was good. We're finding out gender in Christmas day :) weirdly, baby measures 19+4 ( I'm 19+2) and weighs 11 oz. G also measured 19+4 (I was 20+0) and weighed 11 oz! baby was very reluctant to show the sonographer anything she was looking for. my scan lasted almost an hour because I kept having to stand up and jump around trying to make baby shift position. s/he kept moving in a way that stopped the sonographer from getting the picture. someone is trouble already !

hope everyone's having a good build up to Christmas/ whatever you celebrate :)


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## sequeena

Bumpin that's amazing and I think quite a complicated word for his first word. You must be so proud :)

I'm sorry I've not been around girls, Thomas has a respiratory infection when he passed onto me and he's been really unwell since Sunday. He's stopped running a fever now but is coughing loads, very congested, refuses to eat and isn't drinking very much. He spends most of the days asleep... which is a complete change from usual and I don't like it. To top it off I've just broke out in a coldsore!! We missed his portage and speech therapy and his very important audiology appointment :cry:

If I don't get a chance to say this before the day, Merry Christmas to you all from my family to yous, I hope you all have a wonderful time together and receive wonderful gifts :hugs: :xmas9: Thank you all for the support xx


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## essie0828

Merry Christmas! Happy Holidays! :)



Sequeena hope T gets better so very soon :hugs: Hope he is in form to enjoy his new presents!

Bumpin I'm thinking G has a baby brother in there ;) Hope the gender reveal is awesome and you get a very lovely Christmas surprise. 

Aliss hope your holiday rocks! 

Rach :hi: Merry Christmas hun. 

And everyone else I missed because I totally suck at remembering screen names.......:hugs: and Merry Christmas/ Happy Holidays hope your families are safe and well.


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## essie0828

Well it seems that some of the things we got DD for Christmas require an engineering degree to assemble. "Some assembly required" my ass. Seems to me the only thing I'm not doing is moulding the plastic!


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## sequeena

We've not started assembling yet. I say we I mean OH obviously :rofl: He has a wooden kitchen and a wooden push along toy box to assemble... and that's before Thomas opens his wooden garage and other bits :rofl:

Thomas is slowly getting there thanks. He's not got a fever anymore and hasn't for 2 days. He's not been sick again. He is drinking a little more but he still won't eat :dohh: I can feel that he's lost loads of weight. He wasn't a big boy anyway and always had his ribs and spine sticking out but now he just looks... well malnourished. He's still congested (it's disgusting honestly poor boy :() and he has a terrible cough. He's sleeping loads though (and won't use the dummy so I hope we are now FREE of it as I've stopped offering it). Last night he even started playing with some toys so I know he'll be ok for Christmas.

We got Thomas' speech therapy report today. I'm encouraged by what it says. Also, he's at the top of the list for physio so I just have to ring and make an appointment.

Objectives
- Support parents and carers in developing their child's language and social communication skills
- Develop early attention and listening skills
- Develop early social interaction skills of looking and taking turns and choosing
- Develop understanding at 1-2 word level
- Develop vocabulary of early words and signs

Outcomes
- Thomas was eager to participate in all group activities. Though he could be quite distracted he is easily re-directed to the activity at hand and generally appears to 'want' to attend to the activity but his attention and listening skills are not yet sufficiently developed to support this.
- Thomas enjoyed large doll play, though he was noted to struggle to complete an inset puzzle *(to be fair he's only just learned how to do them and it was one he hadn't seen and he didn't have the luxury of playing with it several times by himself!*
- Thomas is a very social child who showed great interest in the other group members. He found waiting for his turn somewhat challenging but was not distressed when the therapist or his mother indicated that it was another child's turn. Thomas is also able to indicate his choice between two objects by pointing.
- Thomas' ability to follow one key word level instructions is developing. He appears to find it easier to identify named pictures as objects or toys can distract him.
- Thomas was not heard to use any spoken words during the sessions. Instead he communicated using gesture and facial expression. By the last session Thomas was observed to use the signalong sign for 'more' independently.

Recommendations
- Further therapy

Thomas is a social child who participated fully in all sessions. His file will bereturned to his referring therapist on the PSSN team for further input.

Thomas would benefit from adults in his environment using gesture and modified sign to support his communication *I'm just about to pay £50 for a 10 week course in sing and sign*


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## essie0828

That sounds so very encouraging sequeena. Signing has been the best thing to happen to us. DD has 3 consistent signs now and its so amazing how she's communicating with them. Love it! We didn't take a course but the speech therapists have left lovely handouts and showed us new signs. We're working on "help", "play", and "open" for now. It took some getting used to for me but it's well worth learning. HA! We got DD a kitchen as well and it's a terrible headache to put together. I'm not even going to attempt the princess truck or the y pewi bike:haha: Making OH do those as wheels are "his thing". DD has been poorly as well, just had her to the doc yesterday for a terrible cough. Its horrible when they won't eat. All you can do is keep trying calorie rich drinks and foods he usually likes. Swallowing all that mucus makes it hard to have an appetite, I've been chasing DD around with rich milkshakes and cool juicy fruits. Still shes lost a pound in a week....for a tall thin girl thats a lot. It's worrisome. Pedia Sure milkshakes are good, although those may be an American thing... they are fortified and can be used as complete nutrition if he refuses solids.


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## sequeena

The only thing he will have right now is diluted high juice and manuka honey for his sore throat :( he's always been the same though once he's ill he won't eat anything and drops about 2lbs :dohh: Poor hayley how is her cough now?

Apparently this 10 week course will teach around 150 signs :wacko: I don't think Thomas will get anywhere near close to that number but anything will help AND it's extra socialisation for him!


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## essie0828

Lol. I was thinking it was a class for you and not T :dohh: That will be perfect for him. Putting signs with songs and play sounds like a fun learning experience. You may be surprised at what he learns. What's high juice? DD is a milk lover, it's a struggle to get her to drink juice. Weird huh?


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## essie0828

Sequeena DD's neurologist and developmental pediatrician both told me the more the better when it comes to therapy and learning experience for developmentally delayed kids. They encouraged me to get DD into as much activity as she can stand. I think what you are doing with T is exactly that. Wtg mum!


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## sequeena

Thanks hun :hugs: it means a lot, it's hard getting T to interact with other kids :( he loves them, they're not interested.

High juice is this, I'm not sure you have this. We call it squash here but squash usually has aspartame in it. This doesn't. You dilute a small amount with water. 1 bottle lasts well over a month. He refuses milk now.

https://img.tesco.com/Groceries/pi/182%5C5018374175182%5CIDShot_225x225.jpg


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## essie0828

She's still coughing but no fever. Doc says wait and see. She's never had a chest cold before and she has low tone when it comes to her breathing muscles. Worries me she can't clear her chest as well as she needs. Doc says she's doing well so far and praised me for encouraging her to continue breathing exercises. Blowing through noise makers, straws, panting like the dog, anything to get her lungs working hard. All that is stuff we do for speech therapy anyway but evidently it helps with illness.


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## essie0828

Lol. I've never had it but I got thirsty looking at that bottle :haha: If it won't cause him an upset stomach I say up the strength a little so he's getting extra calories. Ummmm. Gimme a sec, there are juice boxes made over here that have protein and vitamins and they are pretty high calorie. I'm thinking they can be ordered from anywhere. DD hates juice and will actually drink one of these on occasion.


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## sequeena

I'll have to keep an eye out for them x bless Hayley I hope she's better soon and can enjoy Christmas xx


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## essie0828

Kiddo woke up and I had to run. Those drinks are Pediasure Sidekicks. They are a supplement so not really for everyday but nice to have on those sick days.


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## bumpin2012

Sequeena: That sounds like a really promising report!

I may or may not be on before Christmas. The inlaws arrive on Monday, and im working, so if I don't

Merry Christmas!


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## RachA

The report sounds good Sequeena :)


We are wrapping everything unassembled as if we put things together I wouldn't be able to wrap them lol


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## essie0828

I couldn't be bothered with wrapping this yr. :haha: We just bought a big bow! She will have tons of wrapped stuff at the family dinner. Shew last yr it was so hard to keep her from EATING it, and from the looks of the confetti diaper the next day I did a terrible job. :rofl: 

She has oral issues and is still putting everything in her mouth. We have to do oral desensitization stuff with her to kind of help her get over that need for oral input and to help with drooling/swallowing. BTW ladies, any of you that have kiddos with oral sensitivities, or weakness, feeding issues, ect. Here is a website for reasonably priced therapy aids. www.arktherapeutic.com
I think they have tactile stuff to. I'm not affiliated with them or anything. We just ordered a bunch of stuff from there that our OT and ST friends recommended to help Hayley.


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## sequeena

Thanks essie I'll take a look. Thomas is still puts everything in his mouth and dribbles like no tomorrow!


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## essie0828

Hayley dribbles a lot as well. Her OT and ST both recommended the z-vibe. I got the customized kit and 3 extra batteries for $66 shipped. We do an oral protocol with her where we touch all her teeth, the gums, cheek pockets and tongue with various tips. She hates having her teeth brushed and this is helping.


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## essie0828

Btw our ST said a good vibrating toothbrush will do if in a pinch. We tried it with DD and she pulls out the bristles and swallows them. She will do the same to a regular bristle toothbrush if given half the chance so we brush her teeth with a rubber tip on the z-vibe. Helps loads!


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## essie0828

Does T grind his teeth?


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## sequeena

Oh that's interesting. T isn't too bad having his teeth brushed... as long as he's the one brushing them (insert 'sucking the toothpaste off the brush' instead of brushing). I'll get a vibrating toothbrush and see how he is.

No he's not a grinder, he wiggles his tongue a lot instead.


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## essie0828

sequeena said:


> Oh that's interesting. T isn't too bad having his teeth brushed... as long as he's the one brushing them (insert 'sucking the toothpaste off the brush' instead of brushing). I'll get a vibrating toothbrush and see how he is.
> 
> No he's not a grinder, he wiggles his tongue a lot instead.

:rofl: that's some tasty toothpaste mum! Too cute. Hayley will not brush her own teeth, she will eat the toothpaste and pull out the bristles. It's a battle every time. Rubber type toothbrushs though, she likes a tiny bit better.


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## essie0828

The tongue wiggling thing may be a blessing in disguise when it comes time for speech. Hayleys ST is always trying to get her to move her tongue to different positions in her mouth. We actually have a small tube we put pudding and other yummy stuff on that we put inside her cheeks to encourage her to move her tongue over there. There's a lot to it really, her oral issues are pretty bad.


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## essie0828

One of her therapists suggested a barium swallow test when we were discussing the drooling issue. I'm not really thrilled to do it just over her drooling. If she were choking on it or her food I would but I don't think it's time for that just yet. The mouth and breathing exercises are helping her swallow some and bless her she has started wiping her mouth when she feels it.


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## essie0828

bumpin2012 said:


> Sequeena: That sounds like a really promising report!
> 
> I may or may not be on before Christmas. The inlaws arrive on Monday, and im working, so if I don't
> 
> Merry Christmas!

Merry Christmas dear! Don't work too hard and please update us with the gender news when you can.


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## RachA

Merry Christmas to all you lovely ladies. 
:)


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## justhoping

my 18 yr old daughter just picked this kind of toothbrush up..its sings for two minutes while u brush..lol yea i know..
but my little one likes it now so maybe try that for teeth brushing..lol


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## Feathers

Hi ladies! Just a quick update as my net time is limited with a little one. Our little boy Paris was born just fine by c-section on the 6th and is doing well :) Had a skull issue at birth which looks to be resolving but we've been referred to the outpatients paediatrics to keep an eye on it. I'm trying not to worry but after Olivia I guess I overreact a little.

Olivia is fine, her MRI came back clear which is amazing news though they are retesting when she is three and on another good note, she has her Geneticist appointment for early January which is far sooner than we thought it would be! She's adjusting to having a new brother and going to a new nursery which specialises in speech development issues and should be much better for her!

Wishing you all a very happy Christmas and hopefully I'll be able to read properly and catch up soon. Hope all is well with you all ladies!


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## AP

Afternoon lovelies. Just wishing you all a merry christmas and I hope you all have an exciting time. :hugs:


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## essie0828

justhoping said:


> my 18 yr old daughter just picked this kind of toothbrush up..its sings for two minutes while u brush..lol yea i know..
> but my little one likes it now so maybe try that for teeth brushing..lol

I have resorted to singing anything and everything to get her to cooperate with brushing her teeth...if there's a toothbrush that will do the singing part I'm game! :haha:


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## essie0828

Feathers said:


> Hi ladies! Just a quick update as my net time is limited with a little one. Our little boy Paris was born just fine by c-section on the 6th and is doing well :) Had a skull issue at birth which looks to be resolving but we've been referred to the outpatients paediatrics to keep an eye on it. I'm trying not to worry but after Olivia I guess I overreact a little.
> 
> Olivia is fine, her MRI came back clear which is amazing news though they are retesting when she is three and on another good note, she has her Geneticist appointment for early January which is far sooner than we thought it would be! She's adjusting to having a new brother and going to a new nursery which specialises in speech development issues and should be much better for her!
> 
> Wishing you all a very happy Christmas and hopefully I'll be able to read properly and catch up soon. Hope all is well with you all ladies!

Congrats! Welcome home baby Paris! Fab news about Olivia as well. Merry Christmas and enjoy your little ones. :hugs:


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## essie0828

AtomicPink said:


> Afternoon lovelies. Just wishing you all a merry christmas and I hope you all have an exciting time. :hugs:

Merry Christmas AP!


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## bumpin2012

Well ladies :)
 



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## sequeena

Ah congratulations!! :hugs: :pink:

How's Christmas going for everyone? Thomas refused to open anything until gone 12pm. He did get into the swing of things eventually. He LOVES his remote controlled Thomas train as well as his leapfrog leaptop :thumbup: however, all his toys and all he wants to play with now is the cbeebies app on Sean's phone :(

In the middle of cooking Christmas dinner. Yum yum!!

I'm sick :( so I'm going to have to cancel going to my cousin's tomorrow. Boo.


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## justhoping

merry x mas everyone and congrats bumpin2012


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## essie0828

Congratulations on your little lady bumpin! :happydance: She will have you guys wrapped around her tiny little finger ;)

Hope you feel better sequena :hugs: T sounds like he had a good Christmas. DD was a little overwhelmed at first to :haha: 

It looks like a toy store threw up in my house :wacko: DD is totally spoiled. My brother gets the loudest most obnoxious toys for her and our dog just to torture me I'm sure :haha: Squeaky toys + Jack Russel + excited toddler = Headache. Christmas was a total blast :)


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## essie0828

I woke up to a brand new GE oven and range installed. Momma is Happy!


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## sequeena

Oh wow esssie im so jealous!!

so here's something I discovered. Thomas' play food is made out of wood but can come apart and stick back together because it has velcro on it. Thomas spent the majority of the day rubbing the velcro up and down his face. He really loved the sensation. Bit odd but it made him happy :haha:

family are coming to us soon to exchange gifts seeing as we cant go anywhere x


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## essie0828

Hun you should have seen the old stove. It was a wreck we hobbled along with till 2 days before Christmas when I opened the oven and the heating element was welding itself to the inside. Crazyness! 

That's so interesting about T rubbing Velcro on his face! Hayley does this with a few different things on her face and palms. Tell his OT about it. They will probably integrate tactile stuff into his therapy. Especially if its calming. Ask T if he wants a piece of Velcro on a lovey he likes. It may end up being a wonderful distraction during tantrums or just a calming influence.


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## essie0828

Hayley has to have a blanket with corners that is a certain texture to rub on her lips and face. She folds the corner a special way and flips it with her fingers. She's like Linus from Charlie Brown. We go everywhere with a blanket.


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## essie0828

My baby girl turned 22 months today and she took her first 2 wobbly steps all on her own. :cloud9: She did it in therapy today and we recreated it for her Dad when he got home. Grammy got to see it as well and she broke down into tears. Super happy day. More hopeful than ever that she will walk independently even if its just for short distances. :cloud9: :happydance:


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## bumpin2012

Essie, that's wonderful! GO HAYLEY!!!


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## bumpin2012

Just found out my GP's office will be closing in a few months. My GP works in a clinic with a few other physicians, and has recently been off due to illness. I guess she's told the office she won't be returning, and the owner of the clinic has decided to close.

So now birth myself and G are left without a Dr. He's being followed by a pediatrician for his development, but not general health. I can't make appointments if he's sick or something seems off. Myself, is not overly an issue as I'm being seen by an OB until we move. When we move back here, though, we may not be ableto find a new GP. I was hoping to be kept on, but not seen until our return... Now i have idea what to do...


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## sequeena

You know... I'm very pleased Thomas isn't sick anymore but I really don't appreciate him bothering me for food at 3am :rofl:

Well done Hayley, that's really great :hugs:

Can you not just register with another doctor bumpin? I guess things are done differently in Canada x here we'd just go to a gp, register and that's it.


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## essie0828

Lol. He's a hungry boy after fighting off that sickness. But being up at 3am for anything sucks :haha: glad the little guy is feeling better. It's past midnight here and Hayley is just now winding down :dohh: I may see 3am tonight myself. 

Bumpin what exactly are GPs? General Physician? What about phoning Gabes pediatrician and asking what to do if he needs non emergency immediate care? Mabey they can put you in touch with someone. Hayleys pediatrician when she was 4 months old just up and left our local clinic without saying a word. She was the only doc we had seen with Hayley and I called to bring her in for her 4 month check and they just said Dr. E doesn't work here anymore. :nope: It's such a pain to go through finding a new doc.


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## essie0828

So evidently wide strips of velcro are hard to find. Thinking about T liking it made me want to get a few pieces for hanging a couple of Hayleys puzzles up on the wall. 2" wide strips are the biggest I've found so far. Surely is made wider.


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## bumpin2012

There is such a shortage for Drs here, it's really hard to find one accepting new patients, let alone a good one. I've gotten a few recommendations from friends, so I'm going to be calling around during the week. I would like to have one before we move. I think it will be easier to find one for me and G first, because they will generally take on new baby without hassle. Coming back, I need a GP to take on 3 new patients...

GP is general practitioner - your family Dr. Here you need one for basic health care, vaccines, referrals etc. I'm sure ours similar to your system in the UK. We sees G's pediatrician at the end of January and I'll ask her for help if I haven't found someone then. She only runs a clinic twice a month, and she fills up really fast. She's a specialist pediatrician, not a general one...


----------



## sequeena

Yes we have GPs here x it's where you go if you have a chest infection to get antibiotics etc. they also have nurses at the surgery who give vaccinations, smear tests and the like etc. Children don't automatically see Paediatrician's here. We have health visitors instead who are assigned to the child from birth to 5 years old. Thomas has a Paediatrician but only because of his problems. Paediatrician's are specialist doctors here.


----------



## essie0828

bumpin2012 said:


> There is such a shortage for Drs here, it's really hard to find one accepting new patients, let alone a good one. I've gotten a few recommendations from friends, so I'm going to be calling around during the week. I would like to have one before we move. I think it will be easier to find one for me and G first, because they will generally take on new baby without hassle. Coming back, I need a GP to take on 3 new patients...
> 
> GP is general practitioner - your family Dr. Here you need one for basic health care, vaccines, referrals etc. I'm sure ours similar to your system in the UK. We sees G's pediatrician at the end of January and I'll ask her for help if I haven't found someone then. She only runs a clinic twice a month, and she fills up really fast. She's a specialist pediatrician, not a general one...

Ok I see :dohh: That's very similar to the US, but there are plenty doctors. Here the trick is sorting through the crappy ones. To see a specialist pediatrician here is similar. Some you can only see once a yr unless it's an emergency. Like the neurologist and CP specialist. A GP sounds like a Family Physician here. They treat all ages for common stuff and they do referrals for the rest.


----------



## essie0828

sequeena said:


> Yes we have GPs here x it's where you go if you have a chest infection to get antibiotics etc. they also have nurses at the surgery who give vaccinations, smear tests and the like etc. Children don't automatically see Paediatrician's here. We have health visitors instead who are assigned to the child from birth to 5 years old. Thomas has a Paediatrician but only because of his problems. Paediatrician's are specialist doctors here.

That's quite different from here. You have to choose which type of doctor you are most comfortable with, Family Physician or Pediatrician, when the child is born. And your choices are based on the type of insurance you have, in network or outta network........it's a freaking maze. Honestly. I grew up with one Doc who treated my whole family, and now with Hayley we've seen over a dozen :( We have recently joined a Continuity Clinic where DD will see one of three resident docs supervised by one experienced Pediatrician. DD has been treated by this lady doc 5 times and she really likes Hayley. She has helped us with referrals and early intervention stuff because she has a special needs child. We've been waiting and searching for a smart, experienced doc to bond with Hayley and show genuine interest. I'm really hoping we've found the right person.


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## bumpin2012

Sorry, Essie. For some reason I thought you were in the UK 

Canada is similar to you, just without the maze of insurance. Everyone sees a GP (or family Dr) and the pediatrician is only by referral.

I could not live in the US because of the health care issues. Even with the shortage here, it just means I have to go to a walk in for basic care until I find a new Dr to take us on. Sometimes when you go to the same walk in for a while, the clinic will take you on when they get an opening, it's just a pain listening to the "why don't you have a GP yet" spiel every time you go in...


----------



## essie0828

We have the walk in clinics here to. They are usually called urgent care clinics. We have used them with DD during the transition period between her first pediatrician (that I didn't trust) up until just a few weeks ago when we joined the Continuity Clinic with Dr. C. The walk ins/ urgent care give out antibiotics pretty easily and the regular pediatricians hate that. :haha:


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## essie0828

It's a hassle most of the time. All the good docs are sooooo overworked here. Most places have teaching obligations, any bigger hospitals or clinics affiliated with a University. So 9/10 times you see a student first then the doc will come re examine and everyone discusses treatment....to get "special attention" or thorough care, you basically have to pull someones heartstrings and hope they actually give a shit.


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## bumpin2012

happy New Years Ladies! Hope every one has a safe and happy end to 2013, and all the best for 2014


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## sequeena

Happy New Year! I'm a little hungover :dohh:


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## essie0828

:wine: I did it to :dohh: 


Happy New Years girls!


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## RachA

Happy New Year. 
Hope 2014 is good for everyone; babies safely delivered; questions answered; schools successfully allocated; etc.


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## moggymay

Velcro comes in 4 inch wide rolls here, I find ebay the cheapest place so maybe it is the same in the States...


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## sequeena

Oh ladies I am so excited... we've put a deposit down for our first family holiday (butlins minehead) and we go at the end of march!! We're going with 2 friends and their son so it will be a wonderful time. I'm making lists and lists and buying luggage and all sorts :rofl:


----------



## aliss

sooooooooooo... my MIL bought my 14 month old a walkie-talkie for Christmas to 'teach' Alex to speak and cure his autism.

LOVELY eh. A bit flabbergasted, didn't know what to say.


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## sequeena

:dohh:


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## bumpin2012

Alert the medical community! A cure for autism! Seriously!


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## RachA

sequeena said:


> Oh ladies I am so excited... we've put a deposit down for our first family holiday (butlins minehead) and we go at the end of march!! We're going with 2 friends and their son so it will be a wonderful time. I'm making lists and lists and buying luggage and all sorts :rofl:

Very exciting :)

I've been to Minehead. If Thomas likes trains make sure you take him on the steam train that goes from Minehead. I took Daniel a couple of years ago-it wasn't too bad a price and he loved it.


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## sequeena

I tried to pre book it online but the week we go the steam railway isn't running :(


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## RachA

Oh that's a shame :( 
I didn't know you could pre book the tickets. 


Well today Esther counted from 1-8 a couple of times without getting any mixed up. She also then said numbers 9-20 (not clearly!) by repeating them after me. She then 'counted' the berries on a bush although she pointed at the same one a couple of times so I don't think she's quite got the concept of what counting really means yet. 
I find it really odd that she can say 1-8 but when she's talking she can't put more than 2 or 3 words together.


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## moggymay

When do you go Sarah? I am sure we had a flyer through about a gala the last weekend of March and they run stuff every weekend. This is the timetable we were emailed a few weeks back (my Dad is a volunteer on another steam railway so we get timetables for them all!)https://westsomersetrailway.vticket.co.uk/calendar.php


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## sequeena

Thanks Moggy. We go on the week commencing the 31st March and the trains aren't running. Unfortunately we'll have just missed the gala.


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## moggymay

If you are there the Saturday they run then...there is a turntable too where they turn the engine and you can watch, my boys were fascinated :)


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## sequeena

Unfortunately we won't be going up until Monday and coming back on Friday - sucks! We are going to Bristol Zoo on the way back though :)


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## AP

Ahhhh I'd LOVE to go to Butlins, I used to go there as a child!
I always forget to pop in here, sorry i missed the xmas wishes :rofl:
Happy new year ladies, I hope it is one full of new milestones for us all. 

Christmas has been pretty bizarre for us. We decided to give Alex the chance to potty train over Xmas. I didn't expect her to do so well. A few accident over the big days and now she has cracked it. Thing is we are pretty much house bound at the moment and it's not doing any of us favours. We have managed a trip to my grans and in laws but she stayed dry the whole time. I know 100% its impossible to take a trip anywhere without a meltdown at the public bathrooms. We could barely get her in the toilets to change her nappy without an all out nightmare, we'd try changing in the car where we could. 

So we are stumped really. Lack of speech in that department. 

However she is vocalising more. I can sometimes get her to copy a word, although it might come out utterly different to what the word actually is. Othertimes I hear her mumble jibberish and then hear a word in amongst that

I've heard her try and count to 20, I've heard her try count to 10 before (the words again arent always the same as English or anywhere near it but I know what they are) and then one day she just went into the teens and I was like, er.......what? :rofl:

Theres progress. And thats amazeballs. Theres echolalia there too, but sod it, thats amazeballs as well , we can work with that.

As for the sound machine we're using I dont think its made much difference :( Shes putting her hands over her ears a lot still, nothings changed. i have booked Cbeebies Live and typically - its theme is Big Band :dohh: 

Even if we just get to see Mr Tumble I'd be happy, but the closer it comes in the more likely I just wanna sell the tickets. I'm frightened it'll terrify her. I've never ever taken the girls to a show, even at the Fringe, its been too scary (for me:rofl:)


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## sequeena

OMG well done Alex! That's a serious milestone I bet you're so proud :D

I'd be afraid to go to cbeebies too, I suppose the upside is at least you can leave if it goes wrong.


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## AP

sequeena said:


> OMG well done Alex! That's a serious milestone I bet you're so proud :D
> 
> I'd be afraid to go to cbeebies too, I suppose the upside is at least you can leave if it goes wrong.

Thats the plan. I'm thinking ipad and headphones ... hmm!

The thing is she literally wont sit down. I actually cant insist on how bad it is. There isnt even a dinner time where she doesnt get up every 1-2 minutes. I'm honestly thinking she has ADHD but i dunno where to start with that! To be fair i'm sure they will soon find out when its time for school!


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## sequeena

Good idea, or maybe those industrial ear muff type things? I know you can get them for babies so there must be toddler versions too x


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## RachA

AtomicPink said:


> sequeena said:
> 
> 
> OMG well done Alex! That's a serious milestone I bet you're so proud :D
> 
> I'd be afraid to go to cbeebies too, I suppose the upside is at least you can leave if it goes wrong.
> 
> Thats the plan. I'm thinking ipad and headphones ... hmm!
> 
> The thing is she literally wont sit down. I actually cant insist on how bad it is. There isnt even a dinner time where she doesnt get up every 1-2 minutes. I'm honestly thinking she has ADHD but i dunno where to start with that! To be fair i'm sure they will soon find out when its time for school!Click to expand...

My son was like that. We didn't bother taking him anywhere where we knew he'd have to sit down for ages until he was about 5. Meal times were ok- as long as he had food he'd be find. It's only since he started school that he's been abod to sit and watch things. We took him to see the Gruffalo when he was just over 5. It only lasted 60 min but after about 30 he just couldn't sit still-and he loved anything Gruffalo at that point. 

He definitely isn't ADHD-he just prefers to be active.


----------



## justhoping

sequeena said:


> Good idea, or maybe those industrial ear muff type things? I know you can get them for babies so there must be toddler versions too x

i actually just saw and picked up for my little one there headphones for kids..
may sound weird but you can put settings on them that the kids cant play with so they dont harm there ears or break the headphones.. there also break proof and very comfy looking so your little ones may like these better then ordinary ones..

im thinking if they have them in walmart they have them in asda maybe?


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## justhoping

asking an opinion for me, not my two kids who have this..

im finding it hard to communicate latley. People take me wrong, they think im cold and Im not cold. On here and in real life. I try very hard to think before I talk or write because I know I sounds factual and cold. Even when im writing something heartfelt. anyone else have this problem or have older kids with this problem..

Any suggestions...I have Aspergers, Im also a tad OCD with a few other stuff mixed in ,but i think it comes with the territory...lol


----------



## sequeena

I don't have advice, just hugs :hugs: it must be frustrating communicating at times.


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## sequeena

I have to share Thomas' milestone... today was the first time he did finger painting without drinking the paint :)


----------



## justhoping

sequeena said:


> I have to share Thomas' milestone... today was the first time he did finger painting without drinking the paint :)

that is really good....:):happydance:


----------



## Tor

Hi ladies hope all the LO's are doing well :)

DS1 has GDD and most likely autism, he doesn't understand or respond to his name, spinning is getting worse, arm flapping getting worse etc etc.

Sorry deleted my rant, just fed up of people spouting rubbish about how people can just outgrow autism and such really winding me up as ive only just accepted there is something wrong (and its very obvious there is now, you would only have to meet him for 5 minutes to know he had special needs) and maybe he will lead a normal life but maybe he wont improve that much I don't need people telling me really inaccurate things about autism!


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## sequeena

Tor :hugs: rant away :)


----------



## Tor

Thanks hun, the full version was all the things my mil has said but I deleted it as knowing my luck she would be googling away and it would come up haha! 

Feel better now as OH has just got home and I've let it all out and breathe...

I hope you don't mind me joining in on here, ive been stalking for a while but really struggling lately and just feeling a bit disheartened/frustrated with it all, I think its as his 3rd birthday gets nearer I always said by then he would probably catch up and if he didn't then you would know there was definitely something wrong and hes got worse really so I think its just got me down :( 

Do you ever feel frustrated when all your trying to do is simple things that they should be able to do at their age and its just impossible? I know its not his fault and I feel terrible but I cant help it lately.


----------



## bumpin2012

welcome to our little group :)

special needs kiddos are frustrating for sure. I think every one of us in here have had a period in time where it all is too much to deal with, and all you want to do is scream. rant away. we're all here to listen :hugs:


----------



## Peanut78

Hi All, 

Thanks so much for your supportive posts a few weeks ago, it meant a lot :hugs: I'm sorry I didn't reply sooner, I was just finding it so difficult even writing about it felt overwhelming. I'm feeling a bit better now and have put lots of wheels in motion to try and make his school environment better more productive. More on all that later. 

Tor, I often feel very frustrated with my son. I feel so guilty about it too, I know he can't help it, but sometimes neither can I. I too am tired of people telling me that everything is fine: "once he starts talking, his speech will come very quickly" - no in all likelihood it won't and those comments which are intended to be helpful and comforting are anything but. :nope: To me it just highlights the fact that I have to manage everyone else's expectations - which I find equally exhausting. 

I've actually reached the stage where I think I need to go see someone - a counselor perhaps with all the pent up emotions I have - I'm so angry, resentful, afraid, frustrated, overwhelmed etc. the list just goes on...


----------



## Peanut78

Also btw, anyone read/ heard of this book...?

https://www.amazon.com/The-Elephant-Playroom-Extraordinary-Heartbreaking/dp/1594630356


----------



## bananabump

Has anyone's toddler had a hearing test recently? Leo has got one on Thursday and I've heard mixed reviews about how accurate they are at this age x


----------



## sequeena

Peanut I'm glad things are being sorted :hugs: and yes I agree counselling would be good - if I'd known how things would go with T I would have stayed in counselling for longer.

I've never seen that book before it looks like it would be a helpful (and emotional read) though.

Emma Thomas had one last year, July time I think. He's having another on the 21st. Has he ever had one before? Thomas was fine for his he didn't like the stuff being put on his head though. Whether it's accurate or not I can't really say as my paediatrician seems to think he has hearing loss along with glue ear but I was only told glue ear.... so frustrating.

Also, what the hell congratulations!!


----------



## bumpin2012

congrats bananabump!

G had had hearing tests done in June and September. I would say they were fairly accurate, as symptom wise, the tests confirmed his symptoms :)


----------



## annanouska

:hugs: I just wanted to say hello ladies:flower: 

I still see a few of you "out and about" the forum so wanted to say hello :thumbup: 

I stopped posting in here as I felt a bit guilty moaning about my Los "delays" as I know they are nothing compared to what you are all going through /been through so I didn't ant anyone to think I was trying to be a bit obnoxious ( the my 1 yr old can only say 50 odd words is that behind thread spring to mind :haha: * that wasn't me who made that thread just I case anyone did think that! *) 

Just a little update... We are 18 months now. He still suffers with his hyper mobility tho it doesn't look quite as horrific now. He has just started walking now at long last :happydance: but it is on his terms and not very often I think it hurts his feet at times :shrug:he says nothing ( used to say hiya mummy and dad not a word for 4 months now) he doesn't appear to understand words. Or commands either.hearing is top notch :thumbup: he likes stacking g cups ATM, he doesn't stack but likes to order them into one another. Behaviour is horrific far worse than others hs age I think mainly due to communication :shrug: 

Xxx


----------



## Tor

Peanut- Its good to know im not alone, sometimes I feel like im just not cut out for this, im always the flustered looking Mummy lately! We will cope of course we have to so just do I guess but counselling definitely sounds like a good idea, I will keep that in mind for myself if things don't start to improve soon.

The book looks really interesting, it would be nice to read others experiences as I don't really talk in real life to other special needs parents, I am always invited to the local support group but I find it so upsetting being there I don't go.

Annanoushka- I saw the thread, I try not to be too oversensitive to things like that though jut because my child cant I don't want everyone else to hide their childs accomplishments even if it does sting slightly sometimes!
Is your son being seen by anyone or does he have to wait til 2? We are in the Uk and first saw someone at 21 months but heard also that you normally wait until 2 for most things.

Bananabump- My DS1 had a hearing test a while ago they played different noises and when they looked in that direction a puppet in a box started going off, he definitely looked in the different directions for each noise so I could tell he could hear it, im not realy sure exactly how accurate it is but you would know if there was quite significant hear loss for sure.


----------



## sun

Hugs everyone! Hope everyone had a good holiday - I've been away for a while and as usual missed so much! Update from us - I pulled my son out of school completely last Friday and we're looking at other options. Things were getting out of control and just much too difficult for him at school and us at home. 

Tor - Welcome and please feel free to rant away. That's what this thread is for!


----------



## Peanut78

sun said:


> Hugs everyone! Hope everyone had a good holiday - I've been away for a while and as usual missed so much! Update from us - I pulled my son out of school completely last Friday and we're looking at other options. Things were getting out of control and just much too difficult for him at school and us at home.
> 
> Tor - Welcome and please feel free to rant away. That's what this thread is for!

Happy New Year Sun! 

I'm sorry to hear about school :nope: What happened (sorry if I've missed something on this thread!)? What kind of options are you looking at?

As you know, I'm not in a happy place regarding school either :nope:


----------



## RachA

Well I've finally submitted Esther's school application. We've no idea if we've made the right choice tbh but given that it has to be in by the end of this Wednesday we thought we'd better get it in. 
We've gone for the school that our son goes to. It'll be do much easier iro getting them to school etc. I just really hope that they step up to the make iro the help they can give her. There's pretty much no question that she'll get in so we don't have to worry about that (she'll either get in as a child with a statement or as a sibling). 
There are just big question marks overthe other school we looked after as they have a large number of children with additional needs and therefore have a lot of experience. The thing that made up my mind was that the school we have gone for is much more play based for reception and year 1 and Esther learns better that way. The other school us very very formal right from when they start. Esther just doesn't learn well in that way at the moment. 

Anyway-sorry for the long-winded post just to say we've applied!!


----------



## essie0828

Hi ladies! :hi:

Congrats bananabump :happydance: I was skeptical about DDs hearing test in September. She just got so upset, I worried if the results were accurate. 

Sun, peanut :hugs: I hope you guys get things worked out with schooling soon. I really dread the day DD is old enough :nope: 

Hey sequeena :hi: hows T? Saw some of his pics on FB. He's flippin adorable! Bath pics hilarious, perfect placement of the boat :rofl: He always looks so happy :hugs: Congrats on the upcoming vacation :happydance: 

Rach hope Esther likes her new school. I bet she will love going to the same school as her brother. 

Tor :hi: you'll fit in just fine here ;) I love it! 

We have had a tough go of things lately. Some setbacks but we're still in the game ;) Hayley has started showing some tone related movements and tightness in her wrists and arms. She was fitted for splints Friday :(. They cover her thumb and wrist and are flexible. I was really hoping this wouldn't happen and it's sent me spinning. I think this changes her diagnosis. This along with some other set backs in her oral sensitivity and oral motor function. As well as her right side becoming increasingly more stiff and her ROM on that side decreasing. She also shows tactile sensitivity on that side as well as increased pain tolerance. I'm bracing myself for a more complicated CP diagnosis come the 27. Hoping I'm wrong but I think something else is going on, something more than diplegia :(


----------



## sequeena

Well done on applying Rach, I hope you get the statement without too much of a problem xx

How is she doing with the splints Essie? Thomas hated his at first but did get used to it. Good luck for the 27th :hugs:

We had T's second Ruth Griffith report yesterday. They've placed him under 1st centile developmentally and it really sucks. There was quite a lot in the report, too much for me to take in really but he's hyperflexible pretty much everywhere and the paed believe he has hypotonia too (which really would not surprise me). He DOES have hearing loss in both ears along with glue ear on BOTH sides. I'm very upset about it all, he's got worse, not better and seeing everything written so coldly is awful. It seems the older he gets the more pronounced his delays become. He is at least, walking with a normal gait now.

Oh and to top it off the squint in his left eye has come back.


----------



## essie0828

sequeena said:


> Well done on applying Rach, I hope you get the statement without too much of a problem xx
> 
> How is she doing with the splints Essie? Thomas hated his at first but did get used to it. Good luck for the 27th :hugs:
> 
> We had T's second Ruth Griffith report yesterday. They've placed him under 1st centile developmentally and it really sucks. There was quite a lot in the report, too much for me to take in really but he's hyperflexible pretty much everywhere and the paed believe he has hypotonia too (which really would not surprise me). He DOES have hearing loss in both ears along with glue ear on BOTH sides. I'm very upset about it all, he's got worse, not better and seeing everything written so coldly is awful. It seems the older he gets the more pronounced his delays become. He is at least, walking with a normal gait now.
> 
> Oh and to top it off the squint in his left eye has come back.

Still waiting on her splints. We should have them in a week or so. They had to be sent off for sizing. I know she will hate them, I just hope she won't hate them for long. This will most likely be an indefinite thing. Getting her stretched, dressed and in her braces is going to take forever. It's already almost impossible to get out the door on time. :nope:

It's hard to see those reports :hugs: He will get there hun, just at his own pace. He's a beautiful, smiley, happy little guy and he's already came so far since you started this thread. Is he going to have to get grommets for the glue ear? The hypotonia will be helped with the PT. He will improve dear, you do so well with him. :hugs: 

DD has hypotonia in her trunk and her PT is always wanting her to sit on uneven, wobbly surfaces to strengthen her abs and back. I just sit her on my fat belly while I lay flat on the floor and tighten what abs I do have. She rocks around and has to tighten her muscles to keep her balance. She giggles the whole time and we both get an ab workout. :haha:


----------



## bananabump

sequeena said:


> Peanut I'm glad things are being sorted :hugs: and yes I agree counselling would be good - if I'd known how things would go with T I would have stayed in counselling for longer.
> 
> I've never seen that book before it looks like it would be a helpful (and emotional read) though.
> 
> Emma Thomas had one last year, July time I think. He's having another on the 21st. Has he ever had one before? Thomas was fine for his he didn't like the stuff being put on his head though. Whether it's accurate or not I can't really say as my paediatrician seems to think he has hearing loss along with glue ear but I was only told glue ear.... so frustrating.
> 
> Also, what the hell congratulations!!

Thank you! Still early days yet :)

No he hadn't had one before.. he handled it really well though. They said he's got mild hearing loss in his right ear but he's got a bit of a cold so that could be causing it or it could also be glue ear so we've got to go back in 3 months for a re test xx


----------



## bananabump

bumpin2012 said:


> congrats bananabump!
> 
> G had had hearing tests done in June and September. I would say they were fairly accurate, as symptom wise, the tests confirmed his symptoms :)

Thanks :) Yeh he's had it done now and it seemed pretty accurate! X


----------



## bananabump

Tor said:


> Peanut- Its good to know im not alone, sometimes I feel like im just not cut out for this, im always the flustered looking Mummy lately! We will cope of course we have to so just do I guess but counselling definitely sounds like a good idea, I will keep that in mind for myself if things don't start to improve soon.
> 
> The book looks really interesting, it would be nice to read others experiences as I don't really talk in real life to other special needs parents, I am always invited to the local support group but I find it so upsetting being there I don't go.
> 
> Annanoushka- I saw the thread, I try not to be too oversensitive to things like that though jut because my child cant I don't want everyone else to hide their childs accomplishments even if it does sting slightly sometimes!
> Is your son being seen by anyone or does he have to wait til 2? We are in the Uk and first saw someone at 21 months but heard also that you normally wait until 2 for most things.
> 
> Bananabump- My DS1 had a hearing test a while ago they played different noises and when they looked in that direction a puppet in a box started going off, he definitely looked in the different directions for each noise so I could tell he could hear it, im not realy sure exactly how accurate it is but you would know if there was quite significant hear loss for sure.

That was exactly the same as what Leo had.. it definitely seemed to work thankfully :) x


----------



## JASMAK

Hi, I am Tina. My daughter was born via emergency section, general anaesthetic at 37 weeks. Was hospitalised at 6 days with jaundice, three weeks with RSV which was quite severe. The first year she also had rsv, pneumonia and intussusseption, severe anaemia and constant illnesses. We were referred very early as she was clearly behind. To give you a good idea, at age 2, she was assessed as a 9 month old baby. We knew quite early that Makena was behind as my twin sister also gave birth to a girl the same year, and it was VERY clear that Makena was not close to reaching many milestones. She did walk at 10 months though. She was extremely hard to sooth and she rarely slept the night, if ever. We were referred to specialist at 12 months and My daughter Makena was diagnosed with PDD-NOS (a form of autism) at age two. She is now 9.


----------



## sequeena

Oh my gosh one of the worst night's with T for a while and it started off sowell. I'm twitching likea squirrel today as I've resorted to drinking an energy drink. A friend offered to have T for a few hours. I'm so embarrassed but I can't take her up on the offer. It's not that I don't trust her, she has a 2 year old boy too. I just find it very hard to accept help. Sean can't help, he's just got off night shifts and had T for 2 hours this morning so I could sleep (I got 4 hours in total).

Hi Jasmak, welcome xxx


----------



## essie0828

:hugs: girl. Twitching like a squirrel eh? :rofl: Im about to load up on some strong coffee myself. Kiddo slept fine but arguing with DH kept me up. I'm at my wits end with his ADHD, I can't handle him and Hayley. He's agreed to see a doctor and that's progress but that won't be until April. I'll surely be bald before then. I need more patience, where do ya find that crap?


----------



## RachA

Hi Jasmak :) 

Really hoping you get a better night tonight Sequeena. 


If you find out where you can buy that patience Essie can you tell me lol


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## bumpin2012

I could also use a top up on patience... particularly with DH... 

G is good, continuing slow progress. I'm thrilled to say he has words, ( doggie, Dada, hockey, kitty, and yesterday juice) still won't say mama. I'm sure he's hearing much better, and hopefully won't need tubes. so far so good... sleep has become problematic here. he's developed this habit of waking at midnight and refusing to go back to sleep until about 6. makes for very long days between working, babysitting etc. he's up for the day at 7, and only naps for about an hour in the afternoon... one day this kid will sleep...

hope everyone's doing well :)


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## nicki01

Hiya, been a while since I popped in here!
Hope everyone had a lovely Xmas! 
Well where to start, will try and keep it short!
Charlie is doing well, since we got her autism diagnosis she has learnt a good few words, daddy, Chelle (her auntie), car, tree, car, dog, house, shop, sweeties, crisps and biscuits! She sometimes calls me mum instead of dar!
Things have gotten slightly easier since she had picked up them words as she is ever so proud of herself when she uses them.
Her meltdowns have gotten harder as time passes, she is also becoming a little more obsessive with routine and now has started with directions when we are in the car, if we don't go the way she points we are in for a hard few hours! 
She has also gotten quite violent and is hitting and kicking out, pushes and claws at your face too!
On nursery days I arrive to collect her to hear 'we have a good day today Charlie only hit one child' most days she hits out at anyone who gets near her or tries to play.
On leaving I hear the other children say to their mums, that's Charlie the one who hits me. It's breaks my heart, I think I'm going to have to have a chat with them and explain as I don't think try are aware! 
I always tell her at home that we don't hit, its not nice but she just hits me again! :-(
Not sure how to try and get her to stop, reward charts don't work, time out doesn't happen as she will not sit.
She has also become obsessed with being a dog! She spends 90% of the day on all fours barking! It's amusing when out as people do look puzzled but she enjoys doing it!! Bless her! 
On the patience topic, could do with some of that and some sleep if any is going spare! Night times are feed times for my baby and play times for Charlie! Charlie also thought it would be a good idea to stop napping at Xmas :-/ 
Hope you ladies are all well and enjoying the new year.


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## nicki01

Ha ha! Try and keep it short I said! Oops!


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## RachA

Hi Nicki

Seems like you're having a tough time of it at the moment. Unfortunately I can't give any specific advice as Esther's issues aren't autism related.


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## sequeena

Oh hun it's so hard :( I swear I spend most of my day apologising to people because of T's behaviour.


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## JenNeil

Hi girlies i hope you dont mind me joining??

My 3.5 year old finley has special needs, it all started when he was around 18 months when he wasnt talking and had funny habits, and got referred at two, 

he is now 3.5 and his speech is stil the same, he has a severe impairment and cannot say words or communicate properly. He also still has ocds and funny habits, dosent sleep well, and is behind in motor skills and self help. he also has severe webbed toes his left foot is most affected and its isnt the common webbing that people get, hes had genetic testing last year which came back ok.

he has a LOT of autisitc traits, however after his recent 3 day assessment at the child development unit, the report says he is a very complex little boy the main issue being his speech and motor delays. myself im still not convinced about ASD as he has soooo many signs of it, but they say because he is social he dosent have it which confuses me as ive read groups where several children with autism are social, its such a big spectrum!!!! he dosent eat well, likes sensory things (esp colours), dosent sleep well, hates change and often has meltdowns over walking a different way home from school etc. he dosent understand behviour charts or anything like that. Hes not potty trained yet we are trying but its not going very well atm :(

i struggle most days with him having meltdowns often over change and funny little things im constantly on edge. i just want some support really and to chat to others going through the same, its hard. i get so upset for him when hes trying to tell me something and i dont understand :( :( 

everyone stares when hes having a meltdown too which makes it worse!!!! and the most horrendous thing happened last week, hes still in a pram, as he cant walk far still due to his behaviour and toes, he was kicking off because we were going a different way home and this absolute moron shouted from their car "shud be out of a pram at his age!!!!!!!!!" i honestly coouldnt believe it, how dare people judge when they dont know the full story!!!!! i nearly cried on the pavement it was awful :( 

he starts school in september too and i just feel like hes so little and with his little problems, hes not even 4 til june :( and i just hope it goes ok. 

sorry for going on, just need to vent a bit sending hugs xxxxxx


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## nicki01

Hiya. My LO was diagnosed with autism at 2yrs 11months. She has alot of traits, what you mention and more, she also isn't social but like you say that doesn't always count for something. We done our assessments over a 5 week period so they could get a good view of her.
It's hard, so hard and like you say on edge, I'm like that when we have to do anything, we have appointments coming up and I'm dreading them. They are not for another week but I'm trying to mentally prepare myself and plan my journey etc. even tho its only a 15 min drive away I have to be prepared for meltdowns, leaky nappies, refusal to Leave the house which then turns into a wrestle! Spilt drinks, throwing shoes, trying to run off, the list is endless! I normally leave an hour before as with Charlie things are so unpredictable!
Feel free to vent and moan, we need somewhere to air out frustration and concerns!


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## RachA

Hi JenNeil :)

Re the autism-I would say that other than the sensory issues your lo shows the same traits that my son had at that age. I found age 3-4 much harder than 2-3 due to the traits that you said about. My son definitely isn't autistic. By the time he started Year 1 at school he was much better. But if I'd pushed it I think I'd of been able to of hit an autism diagnosis which I would now regret. It's really hard treading the fine line between which us actually very normal toddler behaviour and that which is a sign of something else. 

People need to mind their own business-I've had funny looks with both of mine still being in buggies and it really bugs me.


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## sequeena

I'm so sorry everyone I've been incredibly neglectful of this page. Welcome everyone, I hope you can get some valuable support here :hugs:

Jen you're not alone :hugs: I've had so many snide comments, looks, tutting, muttering under their breath etc about my son. It hurts but as time goes on I learn to just ignore these people.

Thomas' glue ear has gone for now :happydance: he's still has hearing loss but they want to see him again in 3 months before they decide what to do. He wasn't very co-operative. He found the hearing test quite stressful.

His physio appointment went well. We had it confirmed that T does have hypermobility (quite severely actually) and hypotonia. There's really not much they can do it's just how his body is. The physio is going to send me exercises to hopefully help with the hypotonia then I can just take him back if things get worse. She explained that he's not aware of where is his body is so it explains why he can bend so much further (if you look up the beighton scale Thomas does everything on it). It also explains his constant diarrheoa despite a good diet (it causes an overgrowth of bacteria in his bowels), his flat feet and his hernia. We're taking him to podiatry tomorrow to see if he needs some insole type things to create an arch. I was also told he needs to stay in good shoes (obviously) and for them to be as tight as possibly. Essie I know your LO has hypotonia too my physio said lace up shoes are better than velcro ones as you can get them much tighter. I'd rush out and get lace ones now but I only just paid £34 for Thomas' shoes I really don't have the money to go out and get another pair.

Portage is going well and Thomas has been referred to a disability nursery where he will have his own 1:1 worker. Fingers crossed he will get a place :)

Overall I'm feeling better about his development. Yes he's in the lowest possible scale but he can only go up from here :)


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## aliss

Hi Jen,

My son is the same age (June 8 too!)

I don't live in the UK so I do not go through the same processes as you, but is there a possibility of seeking a private diagnosis? I live in Canada and we are also public health, but I paid $1800 for a private diagnosis with a team of child psychologist/psychiatrist/speech therapist/pediatricians etc. Our waiting list was 2 years and we deal with a language barrier so I had no choice but to beg a relative for the cash.

RE: social

My son goes up to random strangers all day and calls them mommy/daddy and takes their hand, babbling afterwards. He is diagnosed PDD-NOS (pervasive developmental disorder, not otherwise specified) which is the spectrum of autism. He is the most sociable boy in the world, despite not really being able to speak. 

Your son really reminds me of mine. As for the attitude from others, been there done that too, I just remind myself how sad those people are and how they have no idea how blessed they are. I have another baby boy who is by all means 'NORMAL' and holy moly the difference. You have no idea how amazing special needs mothers are until you realize what they actually deal with. "normal' kids are... dare I say, a piece of cake. Whenever my little one throws a fit, I just laugh at him and tell him that he can't challenge me, I have a kid with autism and I can handle anything!! :rofl:



JenNeil said:


> Hi girlies i hope you dont mind me joining??
> 
> My 3.5 year old finley has special needs, it all started when he was around 18 months when he wasnt talking and had funny habits, and got referred at two,
> 
> he is now 3.5 and his speech is stil the same, he has a severe impairment and cannot say words or communicate properly. He also still has ocds and funny habits, dosent sleep well, and is behind in motor skills and self help. he also has severe webbed toes his left foot is most affected and its isnt the common webbing that people get, hes had genetic testing last year which came back ok.
> 
> he has a LOT of autisitc traits, however after his recent 3 day assessment at the child development unit, the report says he is a very complex little boy the main issue being his speech and motor delays. myself im still not convinced about ASD as he has soooo many signs of it, but they say because he is social he dosent have it which confuses me as ive read groups where several children with autism are social, its such a big spectrum!!!! he dosent eat well, likes sensory things (esp colours), dosent sleep well, hates change and often has meltdowns over walking a different way home from school etc. he dosent understand behviour charts or anything like that. Hes not potty trained yet we are trying but its not going very well atm :(
> 
> i struggle most days with him having meltdowns often over change and funny little things im constantly on edge. i just want some support really and to chat to others going through the same, its hard. i get so upset for him when hes trying to tell me something and i dont understand :( :(
> 
> everyone stares when hes having a meltdown too which makes it worse!!!! and the most horrendous thing happened last week, hes still in a pram, as he cant walk far still due to his behaviour and toes, he was kicking off because we were going a different way home and this absolute moron shouted from their car "shud be out of a pram at his age!!!!!!!!!" i honestly coouldnt believe it, how dare people judge when they dont know the full story!!!!! i nearly cried on the pavement it was awful :(
> 
> he starts school in september too and i just feel like hes so little and with his little problems, hes not even 4 til june :( and i just hope it goes ok.
> 
> sorry for going on, just need to vent a bit sending hugs xxxxxx


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## RachA

Yay for all of Thomas' improvements etc. you sound much more positive about it all Sequeena :)
There's nothing really new with Esther-she's just pootling along as she usually does.


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## bumpin2012

wow, sequeena. that's a lot of stuff happening. hopefully having a placement will help. glad to see your staying positive. you are right, he can only improve from here :)


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## nicki01

Nice to see you are feeling positive regarding Ts development! 
I finally recieved our report from Charlie's diagnosis today its only taken 2 months and 2 calls to chase it up! :-o
We have an appointment tomorrow morning with pediatrician not sure what its about, I'm guessing just a catch up or discussion on what happens now? I'm going to ask how to go about getting Charlie's eyes tested as an everyday optition is not going to be appropriate! Charlie would have a whirl in somewhere so formal and there would a glasses tornado!! 
Also need to ask about a dentist, she has one and has been a few times but they are not understanding only ever give us a 10 min slot and everything with Charlie takes alot of time and reasoning and begging and bribery!!! 10 minutes with someone who says open your mouth and let me poke sticks in is not long enough! Charlie screams and cries and kicks and squeels! 
Going to see if they know of any signing courses/classes I can attend! 
I've been teaching Charlie the signs for more, stop, please, milk and thank you for 6 months now with no luck however in just one day last week she used them all in context! And today she told me had done a poo! I was made up, she said 'dar (mum), poo, yuk' and pointed at her nappy! I asked her if I should take it out and she said 'ess peas!' I'm a happy mummy!


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## RachA

Are you seeing someone at the child development centre in Poole?
Also-are you NHS or private dentist? We have a really good dentist that doesn't push our children at all to have their teeth looked at. 

Not sure how much joy you'll have looking for signing classes-I looked a year it so ago and there didn't seem to be anything available. 

I can recommend Singing Hands dvd's though. If you do look into signing classes you'll need sign-a-long as that's what they seem to be teaching children now. Esther gets signing at Playschool and they switched from Makaton based to sign-a-long in September.


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## moggymay

Our dentist just asks them if he can look in their mouths, my youngest is scared of the chair moving with him on it so the dentist gets him to help press the buttons to move the chair then he climbs on.....the dentist doesn't touch unless they are willing, last visit he got him to open his mouth to RAH in a mirror and he counted teeth that way. A good dentist should be understanding of a little fear - I still hate going but it is a necessary evil.

Excellent work Charlie telling you she had done a poo and such a polite response to whether you could move it :)

We are in limbo now until we hear about a confirmed school place, pre-school are thrilled with his progress and he is finally starting to progress with some of the sounds we are missing but he will need support in Reception for the learning aspects, socially and toileting etc are fab, physically and understanding are bang on if not ahead just the speech still lagging....frustrating to think that had he been born 3 weeks later he would be ok as far as school as he would have a whole extra year to prepare and catch up :( Plan at the moment is I believe to have a support person in place for phonics elements of the day so potentially just an hour a day....the school we want has this facility already with staff who work with the current Y2, the children will move to the junior school in Sept and the staff then are free for reallocation to new children if needs be....really really want to get our first choice school, why do we have to wait so long!


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## JenNeil

hi everyone thank you for the replies sorry i havent replied sooner :hugs::hugs::hugs:

moggymay im getting the same with fin, he starts full time school in september, i do worry about him, with all his little issues and toileting and everything else, but he has the suport in place, 

aliss - thank you hun. theres no way i could afford private here, its very expensive, im lucky that ive had the support in place from him being 18 months. im not happy at all with the speech and language therapists though, he got referred at 2 and is now 3.5 and has still had NO speech sessions, they have messed around and said they need to work on his attention skills first and that came to nothing, now he has to go to a group thing for 6 weeks, so by the time he has "proper" therapy hes going to be near 4! i think its disgusting!!! :growlmad::growlmad::growlmad:

sequeena - im glad things are going well for Thomas :) :) 

thank you everyone else for the replies, im just getting used to it on here.

regarding dentists, mine are going to where im going from next month - and ive got an emergency appointment for tomorrow as im in severe pain and cant tolerate it anymore, im not registered anywhere and cant get in due to all been private so had to ring 111 this morning :cry::cry::cry::cry: so im not a happy bunny today. from next month ive found a practice we are all going to where we can pay monthly but boys are free so we going there.. i think lewis will be ok its just fin, it will be getting him on the chair and his mouth looked at :( so wish me luck for tomorrow as im a nervous wreck :( :( :(


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## RachA

Jen - i know its so frustrating but the speech therapists can't doing anything until their attention is a certain level. Esther has been seeing a SALT on and off since she was 2y 4m and they spent well over a year working on attention levels. When she goes for her next block there will be more speech involved. Now her attention is better she is actually picking up words and just starting to put small sentences together. I really feel your frustration. I'm another one who's lo starts school in sept and i do worry. Esther still hasn't got formal help in place yet either as we are waiting on a statement and we are not guaranteed it.


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## sequeena

I agree, unless they have the attention skills it won't work. Thomas had a block of 6 weeks group therapy at the end of last year and whilst he did try very hard he just didn't have any patience/attention to really focus. He's going to go into 1:1 therapy because group therapy clearly doesn't work for him. When that will happen though I don't know!


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## Feathers

Hi ladies apologies for my long absence, life with 2 children is very hectic! Mostly because of Olivia rather than my little boy who tends to just go with the flow!
We've had a few developments on the support front which is great :)
In the next few weeks our samples will be sent off for the full DNA gene testing in which they map out Olivia/Mum/Dad's genes in full so they can see anything that isn't quite right. We've been invited as part of a medical study as it's not available on the NHS yet, but either way if they find anything it's a good thing! Her clinical genetics doctor saw her and said that she has a few specific features that are similar to certain conditions although hasn't offered a diagnosis yet, we need more tests. (She has very almond eyes and a smooth philtrum plus flat feet) but she took lots of photos to discuss with other doctors also.

We actually booked to see a private speech therapist (bored of waiting for the NHS) who came out to see her and offered some support, it was definitely worth it! But typically then the NHS team came through and are visiting nursery and home. I've been offered a 6 week course but it's on portage afternoons so no can do! HOpefully the next time it runs it will be on a different day. Portage have also gone into nursery to offer some support there.

And on a good financial note, her 2 year old funding is going through for 15 hours of nursery care free based on her special needs! Should free up some of our money to pay for other things for her.

Olivia is being very difficult at the minute, hitting, biting, throwing things...she keeps trying to stamp on her brother. I can't leave him for a moment. She really hurts as well when she does it! We've been trying time out, telling her it hurts and makes mummy sad etc but she just laughs. Anyone else have experience with this and have any ideas? As she gets older her behaviour is getting harder and harder to manage and more worrying to me. She's just very hard work and I feel bad when I get frustrated with her :( Sorry just moaning more than anything. 

On a more worrying note, portage and I think she has some sensory issues as she doesn't seem to feel any pain! She burnt her hand last week on the iron (don't ask) but doesn't feel it, doesn't register when she has fallen over and hurt herself. Seems a little worrying to me. I'll definitely be bringing it up with the paed! 

Hope all is well with you all and your little ones!


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## sequeena

Hey Feathers good to hear from you (though I do have you on fb haha). Glad to hear things are moving forward. That's great, through probably feels like a whirlwind right now :haha:

Good luck with the DNA testing. It's an odd situation to be in. We're not that far on the genetics journey yet but I find myself looking forward to the day we (possibly) get a diagnosis. I don't want anything to be wrong with his genes but at the same time at least it's a clear answer and this long journey wasn't for nothing? :shrug:

Sorry to hear Olivia is difficult right now - I hear you. Thomas also doesn't feel pain. He's forever head butting, falling over, cutting himself etc and not feeling the pain. I'm always finding new bruises and most recently a cut on his knee and I just wonder when he did it?! We're waiting for an occupational therapist to help us out with that.


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## nicki01

Thanks for the reply rach, yes it is CDC in Poole, seen the paediatrician and she has referred us to a dietician as Charlie's diet is beyond appalling, also bournemouth eye hospital for eye test and a dentist that works along side poole hospital and deals in special needs children! So got a few bits sorted there which was nice.
Went to our first salt today, it was a group of just 3 of them. We left the room and watched them through a one way window. It was just getting details etc today but will be really interested to see how it goes next week, met 2 nice mums there also who's children are also asd. I have been put on the waiting list to do a signing class but she said its super long so I'm not holding out hope, think she said it was called sign a long. Could be wrong tho, will have to find out. Will have a look into the DVD, really want to help her with this as she seems to be picking it up quickly now she has started, she learnt to sign biscuit today after being offered one at salt, came home and asked for one!


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## aliss

Is it just me or are we getting ripped off at everyone chance?


We live in Quebec which most of you know, is a francophone region. My psychologist's diagnosis is in French. We're moving away to an anglophone region and they require the report in English. The psychologist/team is refusing to write the report in English b/c they say their English isn't good enough, and the translators here are demanding $1000 for the TRANSLATION. It cost $1800 to get from a team of six medical doctors, and they want more than half that cost to re-write it in English??

FFS I HATE CANADA AND OUR LANGUAGE CRAP

"troubles du spectre de l'autisme" now I know that isn't in English but it is bloody well obvious what it means, why can't I just translate it myself and have them sign it???

My head hurts.
Sorry........... I'm pissed.


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## sequeena

What a bunch of b*stards. That's daylight robbery.


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## nicki01

That's is really out of order, hope you can get something sorted because that is a rip off. As if its not hard enough dealing with it all as it is without crap like that.


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## RachA

nicki01 said:


> Thanks for the reply rach, yes it is CDC in Poole, seen the paediatrician and she has referred us to a dietician as Charlie's diet is beyond appalling, also bournemouth eye hospital for eye test and a dentist that works along side poole hospital and deals in special needs children! So got a few bits sorted there which was nice.
> Went to our first salt today, it was a group of just 3 of them. We left the room and watched them through a one way window. It was just getting details etc today but will be really interested to see how it goes next week, met 2 nice mums there also who's children are also asd. I have been put on the waiting list to do a signing class but she said its super long so I'm not holding out hope, think she said it was called sign a long. Could be wrong tho, will have to find out. Will have a look into the DVD, really want to help her with this as she seems to be picking it up quickly now she has started, she learnt to sign biscuit today after being offered one at salt, came home and asked for one!

Not sure if you realised but i'm in Bournemouth too. Would be willing to meet up if you want to.


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## essie0828

Hi girls

I've tried to post in here a million times and keep deleating it accidently or having to run off after the kiddo. Ugh. 

Omg Aliss don't pay that. I know there are translators somewhere that are qualified, and surely translating a written won't cost 1000$. Check a university. College kids are smart and work cheap.


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## essie0828

That's just plain wrong to do to people. Aliss I really hope that you don't have to pay that hun. 

Sequeena how's little T? Hope he is liking his PT exercises.

Feathers sorry to hear Charlie is acting up on you. We are having a bit of an issue with that as well. DD is getting to be rough, I'd be a nervous wreck if there was a little baby in the house. :hugs:

We've been to see the CP team at CCH and got some new info on DD. It's kind of good news really, the CP docs think she is primarily hypotonic. Meaning we may not have serious issues with tone related tightness, so we get to avoid baclofen and botox for now. When I asked the doc if she would get high tone later he said it's not likely. We would have seen it by now :happydance: We've been given an order for a swallow study and reccomendations for hippotherapy and warm water therapy pool, :happydance: Hopefully we will have her riding horses come warm weather :happydance: I also spoke with a social worker who has given us tons of info on lots of services avaliable to us. Her medical expenses will always be covered, no matter our income, after we apply for a government waiver :happydance: And we qualify for respite care and daycare at a medically supervised facility:happydance: Girls I'm thinking about going back to work soon. DH and I can manage our schedules where she would be in daycare 3 to 4 hrs a day at a facility qualified to give her therapies. It's so tempting and so scary. DD can't communicate properly and we have our own little language other people don't understand, even DH. I feel terrible just thinking about leaving her somewhere but I can make enough money to put us in a house in the country with a big garden. As opposed to a small townhouse in the city with a mostly concrete, tiny garden. Its a huge decision with tons of scheduling nightmares. Not to mention DH is struggling and I am a little worried about him being responsible for getting DD up and ready for a whole day. Grrr. Making life changing decisions sucks!


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## essie0828

Feathers I'm so sorry. I mixed you and nikki up. I ment to say Olivia dear. :dohh:


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## nicki01

Oh wow, small world! I didn't realise as i usually use my phone to come on here so can't see locations etc! 
Would be really nice to meet, we don't get out much these days since I'm only little and look so young and Charlie can be such a little monster I feel like I'm constantly being judged by everyone! I just bottle it and stay in doors as its easier! 
Where abouts in bournemouth are you? I've always lived in southbourne but have been in Kinson for the past 2 years, although moving in the next few weeks if we can find somewhere! 

Not sure if Charlie caught a little bug from one of the Lo's at SALT but since Wednesday night we have been fighting a temperature, she gets to 39.9 during the night which is errr fun! :-/ only other symptom is a cold, she won't eat, I really have to push to get her to drink, went the docs but he said couldnt check her chest or ears as she was causing to much fuss! She was screaming, kicking, biting, dribbling, crying and anything else you can think off so I think he was a bit scared! Lol. Although it doesn't help me find out what could be wrong! Hoping she gets over it by next week.


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## RachA

I'm not sure my location shows up to be honest. Small world-I was brought up in Winton and now live nearish to Southbourne (top of Castle Lane basically) so we kind of swapped areas lol. Are you planning on moving back to this side of town. 
I'll PM you to arrange meeting etc. 

I don't blame you for staying in-I didn't take Esther out to anywhere I didn't have to for a while cos she was such a nightmare. 

Hopefully she'll be feeling better soon :)


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## essie0828

We stay in lots because of DD as well. If she don't want to do something she cries and screams till she pukes. Or if she is close enough she will pinch, slap, kick, or level ya with a headbutt. Thank God most of the time she's quite agreeable but for example today we got kicked out of therapy 15 min early because she was all done and just fliped out until I got her in the car. I was so nervous I had boob sweat marks on my shirt :nope: Tough day. Whew.


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## bumpin2012

Essie: Yay for thinking about returning to work! Will you return full time, or is there a part time option? Would the child care be able to care for her effectively? That's such a huge step!

G is Good, Baby is good - 26 weeks on Tuesday!


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## essie0828

Hey bumpin. Can't believe your getting so close to having#2. Crazyness! Its like a time warp. I would probably have to return to full time, so it would be DD at daycare 3 to 5 days a week. Thats a lot. If shes not ready or the facility isn't up to par with my standards then we can wait a little longer. I miss working and I miss the $.


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## bumpin2012

don't remind me! :haha: panic is starting to set in. G is SOOOOO busy these days. Im exhausted by naptime, and he's just recharging batteries!

I hope your return to work ends up being a positive change for you! I love working, and being home on mat leave was so lonely and isolating, even with a multitude of appointments. I need to adult social interaction


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## JenNeil

hi everyone Im sorry for not replying until now, I agree with the SALT thing aswell its just frustrating as I feel like ive not got anywhere with him :( 

Im with you there, I often stay in because of fins behaviour, and it seems to be getting worse especially if he gets overwhelmed by things :cry::cry:

this weekend, we had a christening to go to. I was supposed to be going with my OH on our own but due to his ex messing him about with having his three children, I ended up going with my mum and lewis and fin (5 and 3). During the service they were both good, even fin he sat with my mum.

however when we got to the party afterwards, he started. there was some toys on the dancefloor for kids to play with and he kept growling at all the other children and raising his hand if anyone came near. going up to them and screaming in their face.i couldn't relax all afternoon and I had to sit him away and keep giving him time out. he then stood at the table lining his cars up which id taken with us to play with, im glad I took them.

then today, I took him to a playgym, the same thing happened, it was quiet then these other parents and kids turned up and he went up to them growling and shouting like roaring in their face, them mums just looked at me and I said sorry and just moved him away, he then came and sat at the table with me and kept shaking his head and tapping his hands on the table, really concerning behaviour :cry::cry::cry:

on the way back we called at the post office and it was busy, and we were in the queue and this man only looked at fin and smiled and fin just roared at him, everyone looked, 

ive rung the HV up this afternoon as its really worrying me now and stressing me out so much :( :( :(


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## sequeena

Hi everyone, just popping through with hugs :hugs: Really nervous about T's plastics and burns and OT app on Wednesday :(


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## nicki01

Thanks for the pm rach, I keep trying to reply but for some odd reason it won't send! I've just put a deposit on a house in bearwood so once I've got the go ahead for that I will contact you about meeting if that's ok, got so much happening over the next 2 weeks its madness! 
Hope returning back to work goes nice and smooth Essie, be nice to give yourself a little break even if it is to work!

Sorry to hear things are a little tough at the moment Jenneil, did you have any luck with the hv?

Sequeena - how did the appointment go?

I've had 2 poorly children for almost 2 weeks now, had them to the docs twice, first time was awful, second was just as bad although it was Sunday out of hours doc and I wasn't taking any crap, got both girls anti biotics as they have an infection of the ear I think although the doc didn't check??! Been up for a week as Charlie has been hitting 40.3 and tori 39.9 its tough at night when I'm just so tired! They both also have dhiorhea (spelling) from the medicine so I've washing coming out my ears!
However Charlie went back to nursery yesterday and seems to be ok, just a cold now. Tori is still, temperature and bad tummy and is really having it hard at night! She is due to finish her medicine today so I think teething is kicking in! :-/

My little trooper Charlie went to her salt on Wednesday even though she wasnt feeling great and done well, they say she is understanding 2 word commands, like give the bone to the dog, and that she found it easy so they are going to move further with that, they were shocked as they didn't think she would. Of course I'm very pleased and am going to keep on working on them at home!


----------



## sequeena

Jen did you manage to get hold of your HV? I can imagine you're so stressed :(

nick I hope both your girls are better soon. It's great she did so well at SALT :D

T's appointment wasn't great. The surgery wasn't successful. His thumb joint is too loose and the actual thumb is too stiff. He can barely bend the tip. We've declined further surgery as they can't guarantee success and we don't want him going through all that pain again. I'm upset, but we knew this may happen. We tried and it didn't work.


----------



## RachA

Nicki that's fine. Things are a bit manic here for me at the moment too. 
Hope the girls are 100% soon-it's awful when they are I'll like that. 
Great about the SALT though-Charlie did really well :)


Sorry to hear about the news re Thomas Sequeena. 

Not much us happening with Esther at the moment. She's got the Educationsl Psycologist going in the Playschool next Wed to get the ball rolling for a Statement.


----------



## essie0828

bumpin2012 said:


> don't remind me! :haha: panic is starting to set in. G is SOOOOO busy these days. Im exhausted by naptime, and he's just recharging batteries!
> 
> I hope your return to work ends up being a positive change for you! I love working, and being home on mat leave was so lonely and isolating, even with a multitude of appointments. I need to adult social interaction

I'm so excited that Hayley is starting to get around better but I'm with you. Its making for some long days and sore bones. But no pain, no gain right? Kiddo is getting so mobile we are needing to outfit our place with handrails and make it easier for her to navigate in her walker.She a freaking Champ in that thing! Omg it's amazing. With the development of her new gross and fine motor skills she is gaining Words. I may delay going back to work for a few months but if she continues this progress and I can continue her therapies on the same scale I'm doing it. Eeeeek so scary and exciting. I love being competative and work fullfills that for me. And I miss the cash and exercise. I can take or leave the social interaction :haha:


----------



## essie0828

sequeena said:


> Jen did you manage to get hold of your HV? I can imagine you're so stressed :(
> 
> nick I hope both your girls are better soon. It's great she did so well at SALT :D
> 
> T's appointment wasn't great. The surgery wasn't successful. His thumb joint is too loose and the actual thumb is too stiff. He can barely bend the tip. We've declined further surgery as they can't guarantee success and we don't want him going through all that pain again. I'm upset, but we knew this may happen. We tried and it didn't work.

Oh no hun, that sux. What happens now? Bracing or splints? This doesn't mean he will lose function in it, right?


----------



## sequeena

Nothing happens now. He's adapted to use it in his own way. He uses the base to move it about and just pressed buttons without bending his thumb.


----------



## essie0828

That's great. He's a little trooper! Sorry the surgery didnt go well :(


----------



## bumpin2012

ah, Sequeena, So sorry that he went through all that for nothing :( Poor little guy is such a trooper!


----------



## sequeena

How is everyone? Hope you've had a lovely Valentine's Day :)

Well, I don't know if I mentioned it here but Thomas is now sleeping 10-12 hours a night :dance: it's already had an impact. He's not so difficult in the day and any meltdowns he does have I'm better prepared for. He still isn't eating meals (and if he is he has a tiny amount) but he's snacking a lot so I make sure he has easy access to crackers, fruit, cheese etc. cereal bars are a favourite for him. I'm going to make a homemade flap jack type thing so I can control the ingredients.

We had Portage this week. His 3rd session since November. She kept cancelling and I was getting really fed up. It went well though. This is his 'homework'



He loves the shape sorter. It plays music :) I make sure he sorts all the shapes before I put the music on for him. The puzzle is more difficult. It's the hardest one yet. The other one only had around 6 pieces and they were shapes. Even the ones he does with me are basic animal/vehicle/number shapes.

We are slowly getting somewhere with crafts though it is still a battle. I bought a glue stick instead of using PVA glue and he thought it was a crayon. He just wanted to 'colour' with it. I couldn't get him to understand that it wasn't a crayon and when I took it away there was tears, his table was thrown across the room etc. Anyway this is what he did;



I mostly stuck the gems on for him. I also opened the chunky chalks we got him for Christmas and he enjoys drawing on paper with them.

He has an appointment in Ophthalmology on Monday. That's usually good news. Fingers crossed his eyesight hasn't got any worse.

And oh my gosh congratulations Essie :hugs:


----------



## essie0828

Thanks hun :hugs: It's still a bit of a shock really. I was getting bfps for 3 days and calling them evaps :haha: 

Awesome news about T!!!! He's such a handsom lil guy. Love the picture he made for you. Lol I'm sure DD would just eat the glue. She already had a sample and seemed to like it. All our crafts have to pretty much be edible :wacko: How did you get him sleeping??


----------



## sequeena

Oh trust me that glue went in his mouth a fair few times. We still have quite a problem with him still eating things AND he's started to dribble loads again :(

I didn't do anything, he literally just did it. It took us completely by surprise. He's solidly going down between 9-10pm and will be up at 9:30am.


----------



## essie0828

sequeena said:


> Oh trust me that glue went in his mouth a fair few times. We still have quite a problem with him still eating things AND he's started to dribble loads again :(
> 
> I didn't do anything, he literally just did it. It took us completely by surprise. He's solidly going down between 9-10pm and will be up at 9:30am.

Holy crap! That's better than Hayley sleeps. She has been dribbling a lot to, teething is making it worse. Good to hear he's sleeping well, I bet he will do loads better with everything. Who ain't cranky when they are wore out:haha:


----------



## emyandpotato

Hi :blush: I was wondering if I could join? 

My LO is very delayed developmentally in most areas, always has been. His speech is the worst. It's the level of a nine month old, though he understands well. It gets pretty lonely and I feel awful about it a lot of the time, like I've messed up. I hope I'm okay posting here? I'm sorry if I'm not!

Rory is two and a half :)


----------



## sequeena

Of course you're welcome to post here emy :hugs: Are you getting any support? Is rory having any therapies?

We had a good appointment for once :rofl: Thomas' eye sight has improved again :dance: he at least didn't inherit his eye problems from me, I gave him that small mercy :rofl: we're back again on March 25th to see the actual optician. I'm hoping they'll say he doesn't need glasses anymore.


----------



## essie0828

Hi emy :hi: and welcome. My DD is severely behind in speach as well, along with being behind in pretty much everything. :hugs: It's a tough road to walk somedays. :hugs:


----------



## essie0828

Yay for T's good appointment :happydance: He's doing so well, WTG momma :happydance:


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## emyandpotato

Sequeena that's fantastic! Fingers crossed for him :) 

Nope, no treatment as of yet! He was about to get SALT and be assessed in his development at 18 months but we moved areas and around here the resources are quite limited and we're still waiting. It worries me a little as I see children younger and far more advanced getting SALT in other areas so it makes me think something awful is wrong and he's being ignored, but that's hopefully just my paranoid mama side coming out!


----------



## sequeena

SALT can take a while to set up, they see school aged children too it's just a case of first come first served really. I'm sure they've not forgotten but give your HV a poke if you're worried that they've forgotten.

You may not get anywhere with SALT for a while. T has been in their books for... err, coming up to a year maybe I can't remember but they've not really done anything. He has to learn patience and attention first which he does NOT have.


----------



## JASMAK

We requested Makena have a speech language assessment. We got the results today. They are always so heartbreaking even though we know her struggles I guess reading about her struggles breaks my heart. She really does struggle. She is very behind in speech and understanding. She needs pictures to help explain her day and for her to understand and remember what is requested. Its hard to hear that she is in the 2% for speech and this is am improvement! Sigh! Anyways, at least she is improving. Her interaction with peers was mostly asking people their names, How old they were, Where they were born. .. that kind of thing. She is starting to ask questions when she realizes she doesn't understand things. That's good too. Overall though very behind. I wish I could make things easier for her.


----------



## Peanut78

Congrats Essie! :happydance:

Welcome Emy, it's a tough journey without a doubt there will be ups and downs :hugs::hugs::hugs: Keep pushing for the SALT, as Sequeena says it's a pretty slow moving process. :hugs:

Sequeena, great news on the eye appointment :happydance: and SLEEP :cloud9::happydance::cloud9::happydance:I was thinking about what you mentioned about the dribbling - could it be teething? Also, as you probably know low tone also impacts the mouth muscles (which ultimately leads to drooling and makes speech harder). We were advised to encourage T to exercise his mouth muscles as much as possible for example through drinking through an assortment of straws with increasing resistance (we bought some online from Talk Tools), or eating things that really required him to use his muscles both in chewing or moving things around in his mouth (like sticky peanut butter). Did you also say that Thomas still puts a lot in his mouth (I think it was you)... You can try chewy tubes (your SALT can show how to use them) they can helo with the sensory stimulation he may be seeking by still putting things in his mouth while also exercising his mouth muscles. The drooling does get better :thumbup:

We've actually been doing better. I got an e-mail from T's teacher last week saying he was doing much, much better in many areas :thumbup: I've also managed to find someone with an OT background support him for certain sessions at school. At least I feel like now his teacher has actually seen that he CAN and is able even if he doesn't see it next week she can't come back to me with this lack of ability malarkey. He's been doing really well in his therapy sessions too. Although we are a long way off on the speech he is really trying to put the sounds together :happydance:


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## aliss

Our move to Alberta has been approved thank god and we're on the market next week. I can't wait to leave this shithole. I couldn't even understand the cow at the medical centre this morning for a bloodtest. So tired of raising a disabled child in a place I can't even communicate with medical staff. Every day feels like hell here. That being said, my boy is doing well on his own (no services, of course, typical) and now using 3 word sentences (let's go car)!!


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## Tiff

I'm so crap at keeping up with this thread. :blush: I find I get overwhelmed and get so sad for everyone who's struggling and at times I need a break from it. I'm sorry :( 

Squeena - Glad that T's appointment went well! <3 

Jasmak - I get it, totally. It kicks you right in the "feels" even when you know they struggle. I'm not sure why reading it on paper hurts more. :nope: I find I'm the same when I see so many of my friend's kiddos doing so well where Claire is stagnant at where she is right now. Its so tough, sending you lots of love. <3 

Peanut - Wonderful update! :happydance: Glad that people are seeing that he can.

Emyandpotato - :wave: hi!

We've been okay here. Claire's not sleeping which is typical of ASD kids but its really affecting her. Finally threw in the towel not long ago and spoke to our doctor about Melatonin. Its really been helping her sleep, which is helping her mood. We're seeing quite a reduction in meltdowns which is awesome. However, when she does meltdown now its far more EPIC than the other ones.

She's speaking better and I do feel kindergarten is helping her in that. We're finally picked up for ABA therapy so I'm charting how quickly she cries etc so hopefully we can get on trying to help her regulate her emotions. :)


----------



## RachA

Congrats Essie :)

Really pleased to hear T is sleeping much better Sequeena. When they are sleeping properly it makes everything so much easier. 

Welcome Emy. Really push the SALT. It's worth contacting the HV to see what's happening. If nothing else you should be able to find out where in the list you are. 


Esther's having a tough week this week. I'm helping out at a club run by our church which means I am out of the house from around 8.30am until 2pm (it was 10am til 8pm in Monday). She's used to me being around as I don't work so she's finding it really tough. It seems to be affecting her sleep which is making her grumpy and more likely to kick off. I'm feeling kind of bad as she's usually the one out if my two who goes with the flow more I'm guessing that it's because she's developmentally got to the 2 1/2 age point and is aware when I'm around (or not!) more than she used to. Wer're going away in about 3 weeks and Eather wasn't the one I was worried about but now I am :(


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## essie0828

Thanks ladies. We had pregnancy confirmed yesterday but no scan yet :( probably getting referred on to a high risk ob which is fine by me. I like the extra monitoring after our history. Still doesn't feel real though :wacko:

Aliss :happydance: glad ur getting out of there hun. I hope Alberta opens all sorts of doors for you and your family :hugs:

Rach I still haven't been able to leave DD for long either. I was wanting to get back to work but just leaving her with DH for a few hours is throwing her off. I am her translator and she has started to rely on me for her communication. 

Hi Tiff :hi: Glad to see ya around and good to hear your DD had some relief from the melatonin. Mabey her meltdowns are more epic because she's holding in the little ones? Sounds like tiny steps in the right direction to me. :hugs: mama.

DD met her new PT today and did really well. She spent a fair amount of time stroking the woman's hair and smiling at her so I think they hit it off. She got a little grumpy in the end but that's normal if she's tired of working. And she said, out loud, no signs "more bubbles". This kid is a freak for bubbles :rofl:


----------



## Tiff

Claire loves bubbles too! :cloud9: My work has these virtually indestructible bubbles and she LOVES when I blow them for her. :)


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## essie0828

I NEED me some indestructible bubbles. :haha: We have the scented ones and some days I think I'm testing fate, DD seems to want a drink of them sooo badly:rofl:


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## emyandpotato

Essie you can get touchable bubble mix and a bubble machine quite cheaply- might be an idea! 

Jasmak sorry to hear that about Makena. How is she doing with it all? Is she in mainstream school? 

Rory has his 2 year assessment next week after so hopefully we might begin to get some answers! By the way, does anyone have any experience of LOs beginning nursery when quite far behind? Rory's due to start in September but I'm worried that he doesn't meet any of the requirements.


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## essie0828

Touchable bubble mix, is that a UK thing or is it sold in American stores? Thanks for the info emy I'm gonna google it to see if we can order it online. I found colored bubbles at Meijer that are really neat. When they pop they leave a little red circle that fades away like magic ink. Totally cool. 

Got DDs braces refitted today and I hope that she feels more stable in them. She has been rocking her feet and loosing her balance and her PTs recommended a strap to hold her toes down a bit. She has super strong, hypermobile, monkey feet that are an orthotist worst nightmare:haha:


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## essie0828

Tiff said:


> Claire loves bubbles too! :cloud9: My work has these virtually indestructible bubbles and she LOVES when I blow them for her. :)

Lucky girl! Any job that involves bubbles has to rock, I'm jealous:haha:


----------



## emyandpotato

I'm not sure but I got Rory some for about £3 this Christmas, it's surely an international thing as it's so simple?!


----------



## bumpin2012

UMMM.... ESSIE!!!! Congratulations! Thats amazing news. I hope you get in to see the specialist you want. :wine: (thats some grape juice for both of us!) Cheers to an easy, uneventful pregnancy!


Sequeena: Soooo glad to hear you guys are getting some sleep! Hopefully this continues for you guys. Its certainly about time!

Aliss: Im sooooooo happy to hear that you guys are getting your transfer to Alberta. I can only imagine how frustrating it is to be in a system where you cant even understand what they are telling you and vice versa


I leave on vacation and this thread moves FAST! :dohh:


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## sequeena

Hi ladies I'm just quickly popping in with hugs. Thomas fell asleep too early and is now awake - nightmare! Unless he goes to sleep after 9:30pm he will have a wake up. It's better than it was I suppose.

He has been really grumpy today. I think I've had a constant headache because of his whining. It's just one of those days where you wish everyone would shut up and give you some peace.

I think I'll get us out tomorrow I can't cope anymore. Screw this shitty weather.


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## sequeena

Oh and something to hopefully make you smile. A selfie Thomas took today :haha: yes the dribble is back with a vengeance.


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## emyandpotato

He has the most beautiful eyes.


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## sequeena

Thank you :) I love his eye lashes especially they're so long x


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## essie0828

Awww what a cutie. I didn't know his eyes were so brown, adorable!


----------



## essie0828

bumpin2012 said:


> UMMM.... ESSIE!!!! Congratulations! Thats amazing news. I hope you get in to see the specialist you want. :wine: (thats some grape juice for both of us!) Cheers to an easy, uneventful pregnancy!
> 
> 
> Sequeena: Soooo glad to hear you guys are getting some sleep! Hopefully this continues for you guys. Its certainly about time!
> 
> Aliss: Im sooooooo happy to hear that you guys are getting your transfer to Alberta. I can only imagine how frustrating it is to be in a system where you cant even understand what they are telling you and vice versa
> 
> 
> I leave on vacation and this thread moves FAST! :dohh:

Lol, Cheers! Thanks hun. Our little valentines day suprise ;) Pretty sure:wine: is what caused all this :haha: can't believe your 28 weeks already, little lady will be here so soon:happydance:


----------



## JASMAK

emyandpotato said:


> Essie you can get touchable bubble mix and a bubble machine quite cheaply- might be an idea!
> 
> Jasmak sorry to hear that about Makena. How is she doing with it all? Is she in mainstream school?
> 
> Rory has his 2 year assessment next week after so hopefully we might begin to get some answers! By the way, does anyone have any experience of LOs beginning nursery when quite far behind? Rory's due to start in September but I'm worried that he doesn't meet any of the requirements.

Thanks...yes, mainstream school with a full time aid. Well, she does okay. I have her in 2.5 hours of tutoring a week on top of school. She struggles, socially. She tells me this. She runs back and forth during recess breaks talking to herself. I try to encourage her to play with peers, but she doesn't ask. I am trying to get her in a social play lesson, but it seems next to impossible. There just isn't anything here.


----------



## Tiff

essie0828 said:


> Tiff said:
> 
> 
> Claire loves bubbles too! :cloud9: My work has these virtually indestructible bubbles and she LOVES when I blow them for her. :)
> 
> Lucky girl! Any job that involves bubbles has to rock, I'm jealous:haha:Click to expand...

I work at Gymboree, its a kids clothing store over here. :flower: Their "bubbles oodles" are amazing! They're expensive to buy bubble wise, but I get an employee discount and the bottle lasts forever. :thumbup:

We'll blow them for kiddos who are getting bored with their parents shopping. Other stores in the mall have mentioned that they've found bubbles in their stores halfway across the mall ha ha.

Congrats, btw on your pregnancy!

Squeena - T is such a cutie! :cloud9:


----------



## bumpin2012

Essie: wine always seems to be involved in surprise pregnancies!

And 28 weeks is really freaking me out! With an impending move across the country, and NOTHING ready for this baby, I'm wondering wtf we are doing... She can stay put for quite a while!


----------



## essie0828

Oooh we have a Gymboree about 30min north of us. I have never been, but I think we will go soon. DD is turning 2 next week and some super bubbles sound like a good gift idea. Still jealous of your job Tiff, it sounds like a blast. 

Omg bumpin that sounds like a full plate. Are you switching OB's in late pregnancy? Its a nightmare to do that here. When will you take maternity leave?

Well got an assesment in today about DDs gross motor skills and it broke my heart some. She's at the level of a 13month old in gross motor. Her origional assesment put her at the 10month old level, so in just about 5 months we've progressed 3months of development. It's progress and I'm thankful but it's hard to hear she's a year behind even after intense therapy. We have another review of her overall development in mid March and I'm nervous. Like you ladies have said before, it's hard to see it in black and white.:cry:


----------



## essie0828

bumpin2012 said:


> Essie: wine always seems to be involved in surprise pregnancies!
> 
> And 28 weeks is really freaking me out! With an impending move across the country, and NOTHING ready for this baby, I'm wondering wtf we are doing... She can stay put for quite a while!

Lol. I've been wondering wtf we are doing since valentines day. When DD is being especially difficult I really think I'm in over my head and how in the hell am I going to manage 2:wacko: Most days denial is my best friend:haha:


----------



## Tiff

Definitely go! Its pricey but if you shop sales (they have a different one each week) its actually very cost effective! Not to mention, their clothes last for-ev-er! :haha:

Its all Claire wears. Awesome because she has textile difficulties and they have a 'basics' table that is all the jersey (t shirt fabric) material, leggings, shirts, shorts. We live off of that stuff ha ha. :)


----------



## JASMAK

essie0828 said:


> Oooh we have a Gymboree about 30min north of us. I have never been, but I think we will go soon. DD is turning 2 next week and some super bubbles sound like a good gift idea. Still jealous of your job Tiff, it sounds like a blast.
> 
> Omg bumpin that sounds like a full plate. Are you switching OB's in late pregnancy? Its a nightmare to do that here. When will you take maternity leave?
> 
> Well got an assesment in today about DDs gross motor skills and it broke my heart some. She's at the level of a 13month old in gross motor. Her origional assesment put her at the 10month old level, so in just about 5 months we've progressed 3months of development. It's progress and I'm thankful but it's hard to hear she's a year behind even after intense therapy. We have another review of her overall development in mid March and I'm nervous. Like you ladies have said before, it's hard to see it in black and white.:cry:

Oh, it is SO hard, but three months of progress in five months is pretty darn awesome! I always get emotional after each assessment too....even after all these years. I have learned to try not to compare with other, on track, children...it is very hard tho.:hugs:


----------



## essie0828

Tiff said:


> Definitely go! Its pricey but if you shop sales (they have a different one each week) its actually very cost effective! Not to mention, their clothes last for-ev-er! :haha:
> 
> Its all Claire wears. Awesome because she has textile difficulties and they have a 'basics' table that is all the jersey (t shirt fabric) material, leggings, shirts, shorts. We live off of that stuff ha ha. :)

That's awesome! DD is a knee walker and her pants suffer:haha: Tough clothes and tough bubbles, I am so going there Sunday! Btw totally pictured the movie "The Sandlot" when I read for-ev-er:haha: If you haven't seen it you gotta find it. Best movie ever!


----------



## essie0828

JASMAK said:


> essie0828 said:
> 
> 
> Oooh we have a Gymboree about 30min north of us. I have never been, but I think we will go soon. DD is turning 2 next week and some super bubbles sound like a good gift idea. Still jealous of your job Tiff, it sounds like a blast.
> 
> Omg bumpin that sounds like a full plate. Are you switching OB's in late pregnancy? Its a nightmare to do that here. When will you take maternity leave?
> 
> Well got an assesment in today about DDs gross motor skills and it broke my heart some. She's at the level of a 13month old in gross motor. Her origional assesment put her at the 10month old level, so in just about 5 months we've progressed 3months of development. It's progress and I'm thankful but it's hard to hear she's a year behind even after intense therapy. We have another review of her overall development in mid March and I'm nervous. Like you ladies have said before, it's hard to see it in black and white.:cry:
> 
> Oh, it is SO hard, but three months of progress in five months is pretty darn awesome! I always get emotional after each assessment too....even after all these years. I have learned to try not to compare with other, on track, children...it is very hard tho.:hugs:Click to expand...

Thank you so much hun :hugs: We've only been at this whole therapy/assesment stuff since August of last year and my skin isn't thick enough yet. My perspective of DD is so different than the world's perspective of her and when those two clash I have trouble. To me she's the most amazing thing I've ever witnessed and I can't believe she made it after all our troubles. To others she seems damaged and they want to fix her.


----------



## sequeena

oh essie that is fab :) truly. The gap may be big still but she is closing it xxx

We had a report through the door too. Thomas' first Ruth Griffith report :wacko: it said amended copy on it and to refer to the highlighted section. So I did. The only bit highlighted was GQ centile: 54, under 1st centile. When I had the report originally it only said 54. I looked on the back and it was only sent to us so I guess his paediatrician was trying to make it easier for us to understand.

Except it's upset me further. I knew Thomas was behind on his first one but it was the second report that told me he's under first. Basically there was no change is 7 months.

it's pissed me off. Why send me the first one why not send me an explanation of the second report?! FFS.


----------



## JASMAK

essie0828 said:


> JASMAK said:
> 
> 
> 
> 
> 
> essie0828 said:
> 
> 
> Oooh we have a Gymboree about 30min north of us. I have never been, but I think we will go soon. DD is turning 2 next week and some super bubbles sound like a good gift idea. Still jealous of your job Tiff, it sounds like a blast.
> 
> Omg bumpin that sounds like a full plate. Are you switching OB's in late pregnancy? Its a nightmare to do that here. When will you take maternity leave?
> 
> Well got an assesment in today about DDs gross motor skills and it broke my heart some. She's at the level of a 13month old in gross motor. Her origional assesment put her at the 10month old level, so in just about 5 months we've progressed 3months of development. It's progress and I'm thankful but it's hard to hear she's a year behind even after intense therapy. We have another review of her overall development in mid March and I'm nervous. Like you ladies have said before, it's hard to see it in black and white.:cry:
> 
> Oh, it is SO hard, but three months of progress in five months is pretty darn awesome! I always get emotional after each assessment too....even after all these years. I have learned to try not to compare with other, on track, children...it is very hard tho.:hugs:Click to expand...
> 
> Thank you so much hun :hugs: We've only been at this whole therapy/assesment stuff since August of last year and my skin isn't thick enough yet. My perspective of DD is so different than the world's perspective of her and when those two clash I have trouble. To me she's the most amazing thing I've ever witnessed and I can't believe she made it after all our troubles. To others she seems damaged and they want to fix her.Click to expand...


That's exactly it isn't it. You hit the nail on the head. It's not that we don't know their behind, it's how they act like they are damaged or wrong and need fixing. Dissecting every weakness and bringing it to our close attention while forgetting all the wonderfulness they truly are. So much more than their struggles are these perfect little people.


----------



## essie0828

sequeena said:


> oh essie that is fab :) truly. The gap may be big still but she is closing it xxx
> 
> We had a report through the door too. Thomas' first Ruth Griffith report :wacko: it said amended copy on it and to refer to the highlighted section. So I did. The only bit highlighted was GQ centile: 54, under 1st centile. When I had the report originally it only said 54. I looked on the back and it was only sent to us so I guess his paediatrician was trying to make it easier for us to understand.
> 
> Except it's upset me further. I knew Thomas was behind on his first one but it was the second report that told me he's under first. Basically there was no change is 7 months.
> 
> it's pissed me off. Why send me the first one why not send me an explanation of the second report?! FFS.

Thanks hun :hugs: Surely it can't mean he hasn't made any progress because he has. I don't think Hayley has had a Ruth Griffin test and the results are confusing. Mabey it was amended just to show the percentile ranking but was the same results? I understand why you are upset about it though. He is doing a lot better since you started this thread, and he's about the cutest thing I've ever seen. I know it's hard but don't be upset mama, that paediatrician can piss off with his papers;)


----------



## emyandpotato

Rory had his 2 year check this morning and he's finally being referred for speech therapy! And the lovely HV has said that he's eligible for special needs support at nursery but that he should have no problem with starting in September and they can't turn him down because of his delay, which is fantastic.


----------



## bumpin2012

Sequeena: big hugs. You know he's made some progress, he's doing things he want the last time. I hope your next report is more encouraging


----------



## sequeena

Thanks girls :)

Emy that's great. Does your LO attend a nursery now? You should inquire about Portage - they're therapists who come to the house once a week for an hour to work with the child. It's a very good service.


----------



## sequeena

Found out today that if I get a medical professional (HV, pediatrician etc) to refer Thomas to the wheelchair services in Cardiff we can get a disability pushchair. So we don't need to go through OT at all (though T still needs to see an OT). FFS :growlmad: I wish I'd been told sooner I've been waiting since November!!!


----------



## emyandpotato

Sequeena I'm so sorry about the report. What's a GQ centile? Sorry to sound dumb! Wonderful news about the pushchair though- well that you know now at least- will it make a big difference for him? 

Yes he has a nursery place to help with his speech, and it had actually helped as since September he has said mama, dada, joo (juice), bo (no), and a few other things so huge improvement. HV actually marked his speech at 12 months today which is way higher than I would have expected, though I do think she was generous as he has sign language. I've not heard of Portage, is it a private thing or on the NHS?


----------



## sequeena

A GQ centile is basically a.centile for development. T is <1st so he's be the most severely delayed in a group of 100 children (or however a centile works).

Portage is NHS. I'm in Wales so it may only be available here I'll google it now x

eta yes it'll make a massive difference he cant walk far because of his hypermobility and hypotonia and he is almost out of a normal pushchair. He's just too tall. We cant afford another so this is our only option :( and its likely he'll rely on a pushchair for years so this is the best way to go


----------



## sequeena

Here you go xx

https://www.portage.org.uk/


----------



## emyandpotato

Thanks hun xx

I can't believe you haven't gotten a special needs pushchair earlier, that's disgraceful! So glad you're getting one now :flower:


----------



## essie0828

emyandpotato said:


> Rory had his 2 year check this morning and he's finally being referred for speech therapy! And the lovely HV has said that he's eligible for special needs support at nursery but that he should have no problem with starting in September and they can't turn him down because of his delay, which is fantastic.

Awesome news! :happydance: We love our speech therapy, I think I have as much fun at it as DD. You will like it and your little man will to, I'm sure. :thumbup:


----------



## essie0828

Sequeena glad to hear you are getting a new pushchair for T. Sucks that you've been waiting so long. I'm in a similar situation with DD now that we may be having another kiddo. I usually just pack her if she tuckers out but that may become impossible. And she's so tall that finding a good fit will be hard. She's 36inches already:wacko:

Its been a big week for us. DD took 14 independant steps during physical therapy Wednesday. She was very pleased with herself and me and her dad cried. Ugh big babies we are :haha: Thursday she turned 2 and again I cried like a baby :haha: She made out like a bandit in the gifts department and got to eat more sugar than any child should. We were up till 2am because of that:dohh: And today we saw little bean with a flickering HB:cloud9: I'm too worked up to sleep even though DD and DH are snoring away. I will pay for it tomorrow but for now its nice to be too excited to sleep:cloud9:


----------



## bumpin2012

Sequeena: Yay! Glad your getting a good push chair for T!

Essie: 14 steps! She'll be on her way soon (and into more trouble than you can dream)

Congrats on that tiny heartbeat... so glad to have some preggo company!


----------



## sequeena

Ah I love your post essie it's cheered me up :cloud9: well done Hayley. She's coming on so fast now!!

Nightmare day. Thomas' ankle gave out whilst we were out and he smashed the back of his head on a metal window frame. He's dented his skull a bit and bled under the skin. 2 hours in A&E and he's OK but OMG what a panic :( he's sleeping now he's exhausted. Just further proves we desperately need this pushchair... I am in bits thinking when his joints will give out next.


----------



## Tiff

That's how I understood percentiles to work too. Whatever percentile they're at, that was on par with the 100 or so other kids who took whatever the same thing that T did.

So if he ranked 1, that means 99 of the other kiddos did better at it than he did. Its such a kick in the teeth eh? Claire was listed like that as well, and it broke my heart. There's so many people who tell you that it "doesn't matter" and that they'll do well and you'll help them etc etc... but if I'm honest that didn't overly help me. :blush:

Of course she's going to do well, I wouldn't have it any other way. Sometimes though, just the validation of someone saying "you know, that really does suck and I'm sorry you have to go through that" means a lot more.

That's just me though! :flower:

Sorry about the wait for the wheelchair. How annoying! :growlmad:


----------



## sequeena

Tiff you've written what I feel. I want people to acknowledge our struggles. We deal with a lot and its hard. There's only so much oh he's fine that I can take.


----------



## emyandpotato

essie0828 said:


> emyandpotato said:
> 
> 
> Rory had his 2 year check this morning and he's finally being referred for speech therapy! And the lovely HV has said that he's eligible for special needs support at nursery but that he should have no problem with starting in September and they can't turn him down because of his delay, which is fantastic.
> 
> Awesome news! :happydance: We love our speech therapy, I think I have as much fun at it as DD. You will like it and your little man will to, I'm sure. :thumbup:Click to expand...

What is it like? I have no idea what SALT is or does really!


----------



## emyandpotato

essie0828 said:


> Sequeena glad to hear you are getting a new pushchair for T. Sucks that you've been waiting so long. I'm in a similar situation with DD now that we may be having another kiddo. I usually just pack her if she tuckers out but that may become impossible. And she's so tall that finding a good fit will be hard. She's 36inches already:wacko:
> 
> Its been a big week for us. DD took 14 independant steps during physical therapy Wednesday. She was very pleased with herself and me and her dad cried. Ugh big babies we are :haha: Thursday she turned 2 and again I cried like a baby :haha: She made out like a bandit in the gifts department and got to eat more sugar than any child should. We were up till 2am because of that:dohh: And today we saw little bean with a flickering HB:cloud9: I'm too worked up to sleep even though DD and DH are snoring away. I will pay for it tomorrow but for now its nice to be too excited to sleep:cloud9:

That's so wonderful! Are they her first steps?


----------



## emyandpotato

Tiff said:


> That's how I understood percentiles to work too. Whatever percentile they're at, that was on par with the 100 or so other kids who took whatever the same thing that T did.
> 
> So if he ranked 1, that means 99 of the other kiddos did better at it than he did. Its such a kick in the teeth eh? Claire was listed like that as well, and it broke my heart. There's so many people who tell you that it "doesn't matter" and that they'll do well and you'll help them etc etc... but if I'm honest that didn't overly help me. :blush:
> 
> Of course she's going to do well, I wouldn't have it any other way. Sometimes though, just the validation of someone saying "you know, that really does suck and I'm sorry you have to go through that" means a lot more.

I agree. I know Rory isn't in a wheelchair or anything so I can't really complain, but sometimes when you're so worried that they can do nothing that others their age can do you feel like you can't complain because people will think you don't adore them, or that they're not good enough, but of course it's not that it's just sometimes you're so desperate to experience everything and not worry and not feel guilt when you hear about the 'clever' little boys and girls walking/talking/driving at six months. It's so silly but it's like a kick in the gut when I read threads on the toddler board about children's memories, or funny pronunciations, or singing, cos it's like, will we ever have that? Sorry for my rant, bed time I think :blush:


----------



## bananabump

emyandpotato said:


> Tiff said:
> 
> 
> That's how I understood percentiles to work too. Whatever percentile they're at, that was on par with the 100 or so other kids who took whatever the same thing that T did.
> 
> So if he ranked 1, that means 99 of the other kiddos did better at it than he did. Its such a kick in there teeth eh? Claire was listed like that as well, and it broke my heart. There's so many people who tell you that it "doesn't matter" and that they'll do well and you'll help them etc etc... but if I'm honest that didn't overly help me. :blush:
> 
> Of course she's going to do well, I wouldn't have it any other way. Sometimes though, just the validation of someone saying "you know, that really does suck and I'm sorry you have to go through that" means a lot more.
> 
> I agree. I know Rory isn't in a wheelchair or anything so I can't really complain, but sometimes when you're so worried that they can do nothing that others their age can do you feel like you can't complain because people will think you don't adore them, or that they're not good enough, but of course it's not that it's just sometimes you're so desperate to experience everything and not worry and not feel guilt when you hear about the 'clever' little boys and girls walking/talking/driving at six months. It's so silly but it's like a kick in the gut when I read threads on the toddler board about children's memories, or funny pronunciations, or singing, cos it's like, will we ever have that? Sorry for my rant, bed time I think :blush:Click to expand...

I totally agree Emyandpotato. I don't think my pregnancy hormones are helping at the moment either because everytime I think of Leos struggles I cry. I'm feeling really down about it all at the moment x


----------



## Tiff

I get tired of when people ask about her, and I explain and I get "oh, that's just normal kiddo behaviour" IT ISN'T! And no matter what I say I get that smile and nod, and then I feel like I'm trying to sell my kid out with what she struggles with to make people understand. So I stopped, if they don't understand than that's their issue not mine. Not like they have to live with it daily.

I will say though, she's been LOADS better since we started her on Melatonin. Like a night and day difference! We were actually able to go somewhere last night with her, have her play downstairs with the kiddos when it would have normally been her bedtime and she didn't yell, scream or cry. :cloud9: I've never been able to do that before and definitely not something we'll be making a habit of. But it was a nice change of pace.

I feel like we're shut ins because everyone else who has kiddos can do that and we never were able to. So unless we had people over here while she's asleep we kind of just don't do anything. :haha:


I agree too, its so hard to see my child's report card from school which is basically bottom of the barrel and my friend's kiddos who all have glowing report cards. I'm obviously happy for them, their kiddos work hard and they deserve it! But it does kick me in the teeth to see Claire and while I know her report was amazing for her, the fact that I need to add "FOR HER" to it bugs the crap outta me. :blush:


----------



## sequeena

I'm just really bitter in general in having to go through this with Thomas. O dread the future to be honest.


----------



## essie0828

emyandpotato said:


> essie0828 said:
> 
> 
> 
> 
> 
> emyandpotato said:
> 
> 
> Rory had his 2 year check this morning and he's finally being referred for speech therapy! And the lovely HV has said that he's eligible for special needs support at nursery but that he should have no problem with starting in September and they can't turn him down because of his delay, which is fantastic.
> 
> Awesome news! :happydance: We love our speech therapy, I think I have as much fun at it as DD. You will like it and your little man will to, I'm sure. :thumbup:Click to expand...
> 
> What is it like? I have no idea what SALT is or does really!Click to expand...

I'm in the US so our programs may be a little different but it's all very play based. Lots of naming objects like farm animals and making their sounds. Lots of forced choice between 2 or 3 objects, like having a cow figure in one hand and a duck in the other and asking DD to get the duck. When she reaches out, even if she picks the wrong one, we give her the duck and say very animated "duck!" And we do lots of quacking and waddling like a duck. Every choice becomes a game. It's very simple but in 5 months DD's receptive language has expanded to about 50 objects or more. She knows about every farm animal there is because of the toys we use. Also simple books with one object per page and we ask her to point to each object. Like a fish on one page anf monkey on the other we say or sing 'where is monkey?' If she chooses correctly we do a little song and dance as reinforcement. It's also very much about classical conditioning, as in a reward or positive reinforcement the very moment she gets something right. We also do sign language teaching basic ones like "more" and "want". Now the words she learned to sign a few months ago she speaks. Signing and picture choice eventually turns into a language all their own. I love that she can communicate with me about things she likes now.


----------



## sequeena

It's play based here too they also use sign language :)


----------



## emyandpotato

essie0828 said:


> emyandpotato said:
> 
> 
> 
> 
> 
> essie0828 said:
> 
> 
> 
> 
> 
> emyandpotato said:
> 
> 
> Rory had his 2 year check this morning and he's finally being referred for speech therapy! And the lovely HV has said that he's eligible for special needs support at nursery but that he should have no problem with starting in September and they can't turn him down because of his delay, which is fantastic.
> 
> Awesome news! :happydance: We love our speech therapy, I think I have as much fun at it as DD. You will like it and your little man will to, I'm sure. :thumbup:Click to expand...
> 
> What is it like? I have no idea what SALT is or does really!Click to expand...
> 
> I'm in the US so our programs may be a little different but it's all very play based. Lots of naming objects like farm animals and making their sounds. Lots of forced choice between 2 or 3 objects, like having a cow figure in one hand and a duck in the other and asking DD to get the duck. When she reaches out, even if she picks the wrong one, we give her the duck and say very animated "duck!" And we do lots of quacking and waddling like a duck. Every choice becomes a game. It's very simple but in 5 months DD's receptive language has expanded to about 50 objects or more. She knows about every farm animal there is because of the toys we use. Also simple books with one object per page and we ask her to point to each object. Like a fish on one page anf monkey on the other we say or sing 'where is monkey?' If she chooses correctly we do a little song and dance as reinforcement. It's also very much about classical conditioning, as in a reward or positive reinforcement the very moment she gets something right. We also do sign language teaching basic ones like "more" and "want". Now the words she learned to sign a few months ago she speaks. Signing and picture choice eventually turns into a language all their own. I love that she can communicate with me about things she likes now.Click to expand...

I think Rory's may be a little different as he understands so many words- all his animals, shapes, body parts etc- but he really struggles to make the sounds. Verbal apraxia has been thrown about as an idea. I just hope that it's something that can be fixed ASAP as I'd love for him to be able to talk to the other children when he starts at nursery in September because he'd love some friends.


----------



## emyandpotato

sequeena said:


> It's play based here too they also use sign language :)

I wish he'd bother with his signs! He's so lazy. Like he has not once in 2 years bothered to sign 'mummy' but he learnt the signs for biscuit, car, TV, more, and chocolate in three seconds flat and uses them every other minute! :haha: :dohh:


----------



## bananabump

emyandpotato said:


> essie0828 said:
> 
> 
> 
> 
> 
> emyandpotato said:
> 
> 
> 
> 
> 
> essie0828 said:
> 
> 
> 
> 
> 
> emyandpotato said:
> 
> 
> Rory had his 2 year check this morning and he's finally being referred for speech therapy! And the lovely HV has said that he's eligible for special needs support at nursery but that he should have no problem with starting in September and they can't turn him down because of his delay, which is fantastic.
> 
> Awesome news! :happydance: We love our speech therapy, I think I have as much fun at it as DD. You will like it and your little man will to, I'm sure. :thumbup:Click to expand...
> 
> What is it like? I have no idea what SALT is or does really!Click to expand...
> 
> I'm in the US so our programs may be a little different but it's all very play based. Lots of naming objects like farm animals and making their sounds. Lots of forced choice between 2 or 3 objects, like having a cow figure in one hand and a duck in the other and asking DD to get the duck. When she reaches out, even if she picks the wrong one, we give her the duck and say very animated "duck!" And we do lots of quacking and waddling like a duck. Every choice becomes a game. It's very simple but in 5 months DD's receptive language has expanded to about 50 objects or more. She knows about every farm animal there is because of the toys we use. Also simple books with one object per page and we ask her to point to each object. Like a fish on one page anf monkey on the other we say or sing 'where is monkey?' If she chooses correctly we do a little song and dance as reinforcement. It's also very much about classical conditioning, as in a reward or positive reinforcement the very moment she gets something right. We also do sign language teaching basic ones like "more" and "want". Now the words she learned to sign a few months ago she speaks. Signing and picture choice eventually turns into a language all their own. I love that she can communicate with me about things she likes now.Click to expand...
> 
> I think Rory's may be a little different as he understands so many words- all his animals, shapes, body parts etc- but he really struggles to make the sounds. Verbal apraxia has been thrown about as an idea. I just hope that it's something that can be fixed ASAP as I'd love for him to be able to talk to the other children when he starts at nursery in September because he'd love some friends.Click to expand...

That's what they think Leo has aswell. We've been referred for some tests which should be before the end of this month hopefully. Sounds like our LOs are really similar xx


----------



## essie0828

emyandpotato said:


> essie0828 said:
> 
> 
> Sequeena glad to hear you are getting a new pushchair for T. Sucks that you've been waiting so long. I'm in a similar situation with DD now that we may be having another kiddo. I usually just pack her if she tuckers out but that may become impossible. And she's so tall that finding a good fit will be hard. She's 36inches already:wacko:
> 
> Its been a big week for us. DD took 14 independant steps during physical therapy Wednesday. She was very pleased with herself and me and her dad cried. Ugh big babies we are :haha: Thursday she turned 2 and again I cried like a baby :haha: She made out like a bandit in the gifts department and got to eat more sugar than any child should. We were up till 2am because of that:dohh: And today we saw little bean with a flickering HB:cloud9: I'm too worked up to sleep even though DD and DH are snoring away. I will pay for it tomorrow but for now its nice to be too excited to sleep:cloud9:
> 
> That's so wonderful! Are they her first steps?Click to expand...

Not her very first, she managed 2 independant steps for the first time on December 22 :cloud9: Although she has been getting around in a kaye walker for a few months now. She has to wear braces to support her ankles or she can't walk as they are very hypermobile and she falls.


----------



## emyandpotato

Bananabump: Does Leo have any words at all? Fingers crossed you get some answers soon! Is he behind in anything else?

Essie: Two to fourteen is a huge leap! I bet she was really pleased with herself :)


----------



## essie0828

Emy we also do lots of oral exercises with some therapy tools like tounge lateralization and elevation. Like if DD is watching my mouth as I'm saying Love I will show her to put her tounge behind her front teeth then I have a little rubber tool that I push her tounge up to her teeth with and say la la la Love. I use a vibrating tool with a small precise point and make her 'chase' it with her tounge. It teaches her to move her mouth in ways to produce speech. But DD is a little different due to her diagnosis being CP. But if your little one has any oral aversions oral exercises and using biting toys helps loads.


----------



## essie0828

Sequeena how's little T after his fall?? Poor little guy:hugs: I bet you were scared to death! So glad he's ok. Has his HV or PT mentioned bracing his ankles because of the hypermobility and hypotonia? DD has some soft plastic ankle braces that help so much. They aren't to restrictive and they offer just enough support to keep her ankles from giving out.


----------



## emyandpotato

essie0828 said:


> Emy we also do lots of oral exercises with some therapy tools like tounge lateralization and elevation. Like if DD is watching my mouth as I'm saying Love I will show her to put her tounge behind her front teeth then I have a little rubber tool that I push her tounge up to her teeth with and say la la la Love. I use a vibrating tool with a small precise point and make her 'chase' it with her tounge. It teaches her to move her mouth in ways to produce speech. But DD is a little different due to her diagnosis being CP. But if your little one has any oral aversions oral exercises and using biting toys helps loads.

That all sounds very high tech :haha: Yeah I think that's what Rory will be doing. He's always had trouble with his mouth, and only in the last few months learnt to actually chew his food and not suck it!


----------



## essie0828

emyandpotato said:


> sequeena said:
> 
> 
> It's play based here too they also use sign language :)
> 
> I wish he'd bother with his signs! He's so lazy. Like he has not once in 2 years bothered to sign 'mummy' but he learnt the signs for biscuit, car, TV, more, and chocolate in three seconds flat and uses them every other minute! :haha: :dohh:Click to expand...

Awww that's too cute. Lol. Toddlers are so funny, they really know how to ask for the fun stuff. :haha:


----------



## essie0828

Emy they will do lots of oral stuff with him then. Lots of getting him to chew on different texture chews and touching his mouth and lips and teeth. DD has trouble chewing sometimes as well and the chew toys and z vibe have helped so much. The improvement in teeth brushing has been amazing. Before DD would cry and scream if I forced her to brush her teeth. It was a nightmare every time, but now she tolerates it as long as I let her brush mine in turn. She's pretty rough at it though, it's an adventure to keep her from gagging me or chipping off a tooth:haha:


----------



## sequeena

essie0828 said:


> Sequeena how's little T after his fall?? Poor little guy:hugs: I bet you were scared to death! So glad he's ok. Has his HV or PT mentioned bracing his ankles because of the hypermobility and hypotonia? DD has some soft plastic ankle braces that help so much. They aren't to restrictive and they offer just enough support to keep her ankles from giving out.

He's ok. the lump/indent has gone now so he just has the gash. Bless him. The hospital said he'd need calpol but because he doesn't feel pain normally we've not had to bother... which is a bit freaky but I'm not going to give it to him when he's not complaining.

I was speaking to Sean earlier about the exact same thing. His ankles are getting worse and I'm really scared of what will happen the next time they give out. I'm going to ring the children's centre tomorrow to speak to the physio therapist and I'll need to speak to my health visitor to get her to refer him to wheelchair services so I may mention it then. I think braces even for a short while would be extremely helpful for him.


----------



## essie0828

Here is a website that has lots of info about apraxia and different speech issues related to autism. DD's speech therapist actually takes her training from the lady that runs this site. Its amazing and you don't have to buy anything. Its a little hard to navigate but at the top in the yellow bar you will see 'apraxia' and other links. Also the archives have tons of free info.

www.teachmetotalk.com


----------



## essie0828

Here is a website that has lots of info about apraxia and different speech issues related to autism. DD's speech therapist actually takes her training from the lady that runs this site. Its amazing and you don't have to buy anything. Its a little hard to navigate but at the top in the yellow bar you will see 'apraxia' and other links. Also the archives have tons of free info.

www.teachmetotalk.com


----------



## essie0828

Ugh sorry for the double post. And here's a website for some of the tools/ toys we use. www.arktherapeutic.com


----------



## essie0828

sequeena said:


> essie0828 said:
> 
> 
> Sequeena how's little T after his fall?? Poor little guy:hugs: I bet you were scared to death! So glad he's ok. Has his HV or PT mentioned bracing his ankles because of the hypermobility and hypotonia? DD has some soft plastic ankle braces that help so much. They aren't to restrictive and they offer just enough support to keep her ankles from giving out.
> 
> He's ok. the lump/indent has gone now so he just has the gash. Bless him. The hospital said he'd need calpol but because he doesn't feel pain normally we've not had to bother... which is a bit freaky but I'm not going to give it to him when he's not complaining.
> 
> I was speaking to Sean earlier about the exact same thing. His ankles are getting worse and I'm really scared of what will happen the next time they give out. I'm going to ring the children's centre tomorrow to speak to the physio therapist and I'll need to speak to my health visitor to get her to refer him to wheelchair services so I may mention it then. I think braces even for a short while would be extremely helpful for him.Click to expand...

Aww, what a trooper. DD is exactly the same, her pain tolerance is plain freaky. Never cries if she has to have a blood test or injection, never cries if she falls, and once she burned her thumb at my moms house and we didn't even know until I saw it in the bath later that night. Same way if she's sick, poor thing will be wiped out before we can tell she's sick sometimes. It's scary sometimes.


----------



## essie0828

The braces will help him I'm sure. T and DD are similar in having hypermobility and hypotonia. I think DDs hypotonia may be more severe but without the bracing she couldn't walk at all.


----------



## essie0828

Banannabump :hi: Congrats on being in second trimester:happydance: just spotted the ticker ;) Can't wait to get there myself.


----------



## bananabump

emyandpotato said:


> Bananabump: Does Leo have any words at all? Fingers crossed you get some answers soon! Is he behind in anything else?
> 
> Essie: Two to fourteen is a huge leap! I bet she was really pleased with herself :)

He did learn a few words months ago but nowhere near the correct pronunciation and now he can't say them again. The only consistent ones he uses are 'ma' for mummy, 'dee' for daddy and car. He's only said ma and dee for about 8 weeks though. The rest of the time he just makes noises and knows exactly what he's saying so gets frustrated when we can't understand him. It's really upsetting :( The only other concern about him is his social skills but the paed said she doesn't think he's showing any signs for autism (whih she was considering at one point) so we're in limbo really and only time will tell I suppose. After he's had the official diagnosis of verbal dyspraxia then he's starting speech therapy 3 times a week xx


----------



## bananabump

essie0828 said:


> Here is a website that has lots of info about apraxia and different speech issues related to autism. DD's speech therapist actually takes her training from the lady that runs this site. Its amazing and you don't have to buy anything. Its a little hard to navigate but at the top in the yellow bar you will see 'apraxia' and other links. Also the archives have tons of free info.
> 
> www.teachmetotalk.com

That's fab thank you xx


----------



## bananabump

essie0828 said:


> Banannabump :hi: Congrats on being in second trimester:happydance: just spotted the ticker ;) Can't wait to get there myself.

Congratulations :) Ahh yeh it's a nice feeling to be in second tri, especially as my MS has stopped and we've got a gender scan in 2 weeks! You'll be there soon xx


----------



## bumpin2012

bananabump said:


> emyandpotato said:
> 
> 
> Bananabump: Does Leo have any words at all? Fingers crossed you get some answers soon! Is he behind in anything else?
> 
> Essie: Two to fourteen is a huge leap! I bet she was really pleased with herself :)
> 
> He did learn a few words months ago but nowhere near the correct pronunciation and now he can't say them again. The only consistent ones he uses are 'ma' for mummy, 'dee' for daddy and car. He's only said ma and dee for about 8 weeks though. The rest of the time he just makes noises and knows exactly what he's saying so gets frustrated when we can't understand him. It's really upsetting :( The only other concern about him is his social skills but the paed said she doesn't think he's showing any signs for autism (whih she was considering at one point) so we're in limbo really and only time will tell I suppose. After he's had the official diagnosis of verbal dyspraxia then he's starting speech therapy 3 times a week xxClick to expand...


Limbo is the worst... we've been in limbo for months as the wait lists are so long here, and DS is young, so it seems he gets brushed aside. He's starting to understand us, and his words are sporadic. One week he seemed to have quite a few new words, then back to not using them again.


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## bumpin2012

We finally have an appointment in the developmental clinic... April 1st. Hopefully it will be a good appointment. G has come so far in the past few months. Really hoping they will tell us that he will eventually catch up.


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## nicki01

Hi all, hope we all ok, I've not been on just lately as been mega busy. Sorry to hear of T's fall. I will catch up on everyone one evening this week hopefully! 
Preparing to move and very little sleep is taking its toll. Been really poorly just lately but hopefully getting over it now. 
Having an emotionally tough day today, I'm angry at the world, its stupid but I just want the very very best for my girlie and after a chat at salt today I feel like I've been kicked in teeth and had my heart pounded! It's all things I already new but to have it broken down and explained has really gotten to me. 
Having a rant and feel sorry for myself day!


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## sequeena

Hugs nick we all have our down days. Sometimes it does just get too much.

bumpin that's fab I hope his appointment goes well :)

I got hold of my physio today and Thomas will be assessed for soft ankle braces :dance:


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## essie0828

Awesome news bumpin! I hope his assesment goes well hun. He seems to be doing great:hugs: Hows little lady doing in there?? Kicking up a fuss much? Just over 2 months left and you will be a busy momma of 2! 

Nikki :hugs: I understand how you feel hun. We have had our 6month review through our early intervention services and, well it's hard to swallow. DD communication level is around that of a 12 month old and her gross motor skills are around the level of a 15 to 18month old. Its an improvement but she still has so much more to catch up on. I worry that she won't be able to function well in a school setting:nope: 

Sequeena glad to hear that T will be getting checked out for braces. I think you will be amazed at the stability it will give him in his entire body. Hope you can get them soon :happydance: Lol the downside is he will be super fast now. He will probably run you silly:haha: 

We got good news Friday, our DLA was approved! Its actually called SSI over here but we got it! The full benefit! And backpay from January of this year. We start her full therapy schedule back up next week with the addition of hippotherapy soon:happydance: Now if I can just quit throwing up all will be well:haha: MS is kicking my butt in a major way. I was really sick with DD as well and hoping it's a good sign. :pray:


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## sequeena

Oh that's fab news essie it will make such a difference :D Sorry to hear about the MS though!

Thomas had a bad day yesterday joints wise. He face planted the floor more times than I can count but has been better today. He always goes through these patterns, 1 good day = 2 bad days.


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## essie0828

My kiddo does the same. One day she will be all over the place walking in her walker, cruising, and taking a few independant steps and the next day is a struggle to get her up off her knees. She has had a couple falls lately that have dampered her confidence in walking on her own:(


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## Peanut78

Big hugs Nick :hugs::hugs::hugs:

Bumpin good luck at the appointment, it sounds as tho things are going well :thumbup:

Sequeena/ Essie - our Theo falls over a lot as well. For him his issues with motor planning mean he has poor control over his movements and coordination. We also have the "good" and "bad" days. I've come to realize for Theo as well that he gets so exhausted because he literally has to expend double the amount of energy on trying to balance and coordinate his movements :nope: It does get better all the time tho and OT really helps him :thumbup:


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## bumpin2012

Thanks ladies :) he scored well on his last assessment, so I'm hopeful. He's really coming along. Very hit and miss on his words, one week he's got so many words, then weeks of nothing... 

Essie, little miss is becoming an active little monkey... she's still transverse, and persistently so. My Dr isn't worried yet, but I sure am!

YAY for back pay! I guess going back to work is on hold for a bit?


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## essie0828

bumpin2012 said:


> Thanks ladies :) he scored well on his last assessment, so I'm hopeful. He's really coming along. Very hit and miss on his words, one week he's got so many words, then weeks of nothing...
> 
> Essie, little miss is becoming an active little monkey... she's still transverse, and persistently so. My Dr isn't worried yet, but I sure am!
> 
> YAY for back pay! I guess going back to work is on hold for a bit?

I bet she will turn soon. She's still got some wiggle room left for a few weeks. ;) And yes mam work is on hold:haha: DH is going after a better position at another company and he has told me he would prefer if I stayed with DD a little longer. I still miss the interaction but I may be able to get back into online classes and finish up a degree in the meantime. If the new bean makes it I'll probably be a SAHM and student a little longer. There's a great OT program in our town and I already have a lot of credits that will transfer. I have met most of the psychology credit requirements and have 2 semesters of anatomy and physiology that will transfer. Still need quite a few math credits though.


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## essie0828

Peanut my kiddo has motor planning problems as well. And she is definitely more wobbly on days she's tired. She has to really think hard about every movement so after just a few hours of regular activities she's brain drained and tired.


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## sequeena

How is everyone?

I am becoming increasingly frustrated. You know the issues with Portage she's very unreliable. Last week she was meant to come at 11:30am. I rang at 12pm and was told she wasn't working that week :wacko: I was told she'd ring me about this week's session and she hasn't. Today is the day she's meant to come and of course she didn't turn up. I rang her office and can't get hold of anyone so I've left a voicemail. This is a waste of both mine and Thomas's time I could do other things to help his development.

I finally FINALLY got a urine sample from Thomas. It wasn't easy and I've no doubt they'll want another (it wasn't 'fresh' I kept it in the fridge overnight) but it was the best I could do. Thomas is terrified of having anything near his genitals and it's been so stressful trying to get the sample from him.

My SIL gave birth to a gorgeous little boy 2 weeks ago. His name is Noah Thomas :D Sean loves him and seriously wants another child. I am torn. What would you do in our situation? There's a possibility Thomas's problems may be genetic. I admit I am very broody and all my friends are now pregnant or just had their second children but I am very wary of passing on a possible genetic condition to another child :(

Thomas is his usual self. The falling has been less frequent recently which is good news. He's started parroting 'love you' which is so incredibly sweet. He can only say uh oh and ready steady go independently. I hope he starts saying other words by himself very soon :)

He has an ophthalmology appointment next week and the week after we're on holiday!! :D :dance:


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## bumpin2012

Im assuming that T has had he genetic testing started? Any idea on how much longer the results will take?

TBH, I think in light of the genetic component, I would be inclined to wait until I had those results before TTCing. Had we been seen by a pediatrician and had known there *might* be a genetic issue with G BEFORE we were pregnant, we would have waited. 

On the flip side, If this were to be a genetic issue, would you and Hubby be content with having an only? Would the risk be worth having another? That's something only you and hubby can truly decide. Would adoption be something you would consider?

Im sorry your in such a tough place.

As for the portage, I'd be beyond irate.


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## Peanut78

Portage are such a joke - I mean this is getting ridiculous! Please tell me you are going to file a harsh complaint! :wacko:

Yay for the "I love you" :happydance::happydance::happydance:

Ya, the whole genetic thing is a big question on my mind as well. Three times I've raised it was various doctors. First the paed who said he didn't think it would lead us anywhere and that genetic does not necessarily translate to hereditary (not so helpful perhaps!). Secondly I asked two independent paediatric neurologists who equally both said they didn't think it would lead anywhere and that you have to know what you are looking for in the genetic test and in our case we simply don't know. The last paediatric neurologist we saw said she DID think he should have some genetic testing (but to be honest I didn't have much faith in her or how competent she is...). We'll be trying to see a private paediatric neurologist when we visit the UK this summer - will be interesting to hear what they say. 

I was already 26 weeks pg when we had confirmed through an MRI that T had a neurological condition. It was awful I spent the rest of pg petrified our second baby would too. I also spent the first year of K's life on "milestone watch" constantly. The day he sat and crawled within the time-frames he was supposed I began to breath. I was all set to go ahead and ttc number 3 without a genetic test, but am now leaning more and more towards having genetic testing done (especially if we indeed do go ahead and TTC - not decided on that one). I guess you need to ask yourself whether you would ttc anyway depending on the outcome...? You also don't want to spend your entire pregnancy with mega anxiety about potential outcomes. How soon do you expect to have some answers?

Bring the holiday :happydance::happydance::happydance:


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## RachA

It's a really hard one to work out Sequeena. Part of me would be tempted to wait but then you could be waiting ages and then the gap would be so big between the two that they don't get on etc. I guess i would have to look at if i could cope with two children with the same issues.
I know it isn't quite the same but to some extend most parents go through the issues of 'can we cope with another one' even if their children don't have any other health issues. I know that we did because DS was such a nightmare with his behaviour from being 18 months old. I was already pregnant at that point on wondered what on earth we'd done. However if we'd of waited before TTC in order for his behaviour to get better than we'd of more than likely ended up with in excess of a 5 year age gap which i wouldn't of liked at all.




Things with Esther are just drifting along. We've just been away for 5 days and left the children with family - both of them coped well although apparently Esther was a little more clingy at playschool that she usually is. Her speech is improving. I've noticed since we've been back that she is using the odd linking word here and there :)

I don't know if i should be reading anything into it but this morning when i dropped her off at playschool i had a chat with her key worker to find out where we are with regards to the reports we need for her Statement. We are still waiting on the one from the Educational Psychologist but apparently the Inclusion Officer person has said that it's looking hopeful that a Statement will be in place by the time she starts school in September. To me that sounds like they think she will be given a Statement but i don't know if i'm reading too much into it.


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## essie0828

Congrats on your new lil nephew sequeena :happydance: It's a hard decision that you face in adding to your family but I do want to say that genetic conditions are so complex. Depending on the gene, what chromosome its expressed on and other factors another child born to you and Sean could be totally normal. There will always be that risk though. And it may have nothing to do with your or Seans genetics, sone genetic syndroms are caused by environmental influences. Also I don't think that all of T's issues are genetic, has he had a brain MRI? Since he was a pprom baby and he had a head injury as an infant I'm inclined to believe some of his problems are from those events. It's a hard choice and being newly pregnant myself I can tell you that it is stressful and I worry that something may go wrong with this baby. But I look at DD and our lives, we're different than most but we love this life. Being parents is what we have decided to be, even if that means our kiddos are special or different, they are ours and I know we can cope. I'm actually a bit worried about how to deal with a typically developing child as all my experience comes from DD :wacko:


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## essie0828

Girls I am exausted and the bed is calling. Want to catch up with everyone soon. Rach, peanut, bumpin, :hi: Been reading about the kiddos and keeping up with them but just too busy to really reply. Hope all you ladies have a wonderful weekend and upcoming week :hugs:


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## essie0828

Btw, about the urine sample, did they give you one of the bags to try? He may not allow it but they have sticky tape that holds them around the genitals until he pees in it. You may be able to trick him into thinking its a part of his normal diaper change by trying it a few times. It tucks into a diaper nicely. Other than that they may want to do a cath on him. That really sucks. Hope you don't have to go that route.


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## sequeena

Thanks for the advice everyone. It really hurts that we can't just decide to have a baby and have all the fun/frustration of TTC :cry: I am so annoyed with myself, I am so thankful to have Thomas, he should be enough but we want another and I desperately want him to have a sibling close in age to him. I remember when TTC him that people who moaned about having more when they already had children were nuts and ungrateful. I have to eat my words!! :(

His pediatrician has said that his head injury at 5 months has had no affect on him. It may have done at the time but it's had no lasting effect and certainly hasn't caused the problems he has now. I'm not so sure she can confidently say that when he's not had an MRI but who knows she may be right.

Adoption is something I would consider but I know we wouldn't be accepted for various reasons - my history of depression, self harm and overdose for one. It's completely behind me now (unless I ever get PND again) but that puts us straight out of the running because of the stigma. My aunt's SIL is fostering 3 of her nephews with the hope of adopting them and they are having to jump through so many hoops it's unreal.

Genetics wise his pediatrician has warned it will take a long time. We've not even met the geneticist yet we've just had the initial tests. I've not heard anything back. I am really hoping it's not genetic and all this worry is for nothing but there's that part of me that thinks there's just too much coincidence for it to not be genetic and since finding out Sean's nephew has autism it makes me wonder are the problems even on my side of the family? It's a coincidence... maybe too much of one for both grandchildren to have such similar disabilities and they're only 5-6 weeks apart in age. They haven't seen each other for a year so it's certainly not learned behaviour (not that I think you could 'learn' these sorts of things anyway).

It's just so confusing :( I feel ok right now but I have days where all I can think about is having another child. I know exactly when I'm ovulating (I get pains) and also get loads of EWCM and it just feels like we're constantly losing the chance to have another child.

And then of course there's the worry I'd PPROM again.. I don't believe we'd be so lucky I still can't believe we have him here and for the most part healthy.

Basically I can't win either way :dohh:

I'm so glad Esther's speech is getting better! It's so wonderful when they master a new word.

Oh the urine sample - no I got nothing for it. It's so frustrating everyone I asked said they don't have the pads or bags anymore. Eventually I got it by plonking him in the shower for 45 minutes and catching it with a bowl. It was diluted and had to be stored in the fridge overnight but I am NOT doing it again without some sort of aide. I'll tape a bag to his genitals myself if I have to. The moment he saw the bowl he started screaming but thankfully I managed to catch some urine (and shower water!).

Almost 1 week until we go away. Woo!


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## bumpin2012

That's tough hun. I would think, the best thing to do would be a discussion about how you would handle another baby like Thomas. In a way, it would be easier as you are ARE handling his difficulties. But having 2 could be very difficult to juggle. A developmental normal baby might be more of a challenge... 

I think I would be inclined to wait, but I might be a bad example as I DIDN'T wait, knowing that G was having difficulties...Lol.


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## nicki01

Haven't had time to catch up with everyone. Although I have been reading the posts just no chance to reply! 
Sorry your havin a tough time sequeena, my 2 have a 31 month age gap, had I have known Charlie is autistic I think I would have waited, I struggled alot at the begining as for the first 6 months Charlie hated tori, she would scream an hysterically cry every time tori did which was alot as tori is a high needs baby! She is clingy and cries alot! We also had feeding difficulties at 4 months when she was loosing weight and that was hard managing them both, however having said all of that, I'm so glad to have tori. They love each other so much now, tori smiles and giggles at her all the time and Charlie wants to give her lots of cuddles which is normally a no go! 
I think my mind says I would have waited but in reality I had an ectopic of twins and 2 Miscarraiges before tori and had I not have got pregnant when I did I probably would have even knowing Charlie has her problems! Its a hard one! 
Neither of my girls get left out, they do have to wait a little whilst I sort one or the other and as hard as it was I managed and still do! When you don't know any different you just do it, Charlie's bad days are a battle and I'm exhausted by the end of them but what's a bit of hard work! I'm super scared as to whether tori is autistic as i have declined a blood test for charlie and do find myself milestone spotting and questioning every little thing she does but no matter what age gap I would be doing that anyway! I will worry about that when the time comes. 
I hope you make the decision you are comfortable with for you and your family! Xx


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## rebrrr

Hi. I'm not totally sure if I belong here or not. My daughter is 23 months and recently been labelled as having mild general development delay. I have had concerns about her for the last year, and we have been seeing a paediatrician since she was a few weeks old due to feeding issues. As she still wasn't walking in Dec she was referred to the community paediatrician.

So we had a Ruth griffiths assessment a couple of weeks ago. On the day I was told my daughter was developmentally normal but just a late walker. So no further referrals or assessments, even though I was concerned about her understanding. But then I got the report in the post which painted a completely different picture. It put my daughter in the bottom 1%of children her age in all areas of development apart from one, where she was bottom 5%.

So worried call to the comm paed who said they hadn't realised how the scoring would come out and they want to see us in a couple of weeks. If my daughter still is 't walking there will be a physio at the appointment too.

I don't really agree with the results of the assessment. Not be because I think my daughter is on track, but because I think she is ok in some areas and she actually scored her best mark on language and hearing, which is an area I have concerns about!

I took it upon myself to print out the early years outcomes document from the department from education and did my own assessment. Generally speaking my daughter seemed to fit within the 'normal' range in the majority of areas. Her nursery have no concerns bout her development other than not walking. But I'm not sure if I am 100% convinced about their assessment either!

I'm not sure whether to just go with the comm paeds view and push for referrals for support in all areas. Everything I've read suggests the earlier the intervention the better. I've also downloaded some SALT toolkit stuff to start doing some work at home. I've also got massive guilt about working full time with all of this going on!

I really don't know whether I'm a fraud for posting here or whether I am just in denial! What would you push for in my situation? Like everyone here, I just want to help my daughter as much as possible and help to get her any support she might need. X

Thanks for reading that epic message!


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## essie0828

If you are concerned there is no harm in pushing for early intervention. If she is indeed on track the therapists will be able to tell after working with her for a bit. Honestly it can only help and being a working mom, the extra help will be good for you both. I would try for whatever services she qualified for under the Ruth Griffin test. Even if it's wrong, that test will help get her more therapies and more people for you to speak with about her development. Good luck dear, and welcome :hugs:


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## bumpin2012

No need too feel like a fraud :) everyone here has babies with varying degrees of delay. My little guy has shown signs of delay since he was extra tiny (and I fully admit I'm a nutty mama) I pushed for early intervention assessments when he was 9 months old. I fully believe that it's better to have the assessments and supports in place as early as possible, because if you have a concern, they are there to help you and your little one. My little guy has benefited from being seen very early, and is starting to progress and catch up. He'll be 2 in may :)


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## Peanut78

Hey Rebrrr, we're a mixed bunch in here - all are welcome :flower:

I would get as much support as possible - can't do any harm. To be honest it is the therapists who seem to have the best handle on assessing child development and where your child should be. One thing I've learned is that paed's know the medical stuff, but when it comes to the development stuff often get it wrong. 

If your LO doesn't end up needing the additional support at least you can rule it out and probably learn some nifty exercises to do with LO at home to speed things along. :thumbup:

Good luck :hugs:


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## rebrrr

Thanks everyone. I have the next appointment with the community paed and physio in just under three weeks, so not too long to wait. 

Have been trying some vocabulary exercises with my daughter and she is very good at attempting a lot of words. Only limited success with putting out two objects and getting her to identify one, or giving an instruction to select one thing and put it somewhere. But maybe I'm trying too much and should just stick with broadening the words she knows. Have been working on ball and brush as these were used in the assessment and because we don't have them at home we don't really say those words! 

My daughter has also been taking a few independent steps but she can't manage more than a couple before falling. But she is trying and that is reassuring!


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## sequeena

Welcome rebrrr :) I agree with the others even if it turns out to be nothing it's worth having everything checked out. You're welcome to post whatever you like :thumbup:

Thomas had his eye appointment this afternoon. Putting the drops in to dilate his pupils was a nightmare and he's been difficult ever since. His prescription has changed. One eye is better, one eye is worse. I'd completely forgotten this, I really should take notes but Thomas has an astigmatism.

Anyway, he's getting new glasses next Saturday. His eye doctor recommended Harry Potter style ones as he hasn't developed a nose bridge yet and the ones he has keep slipping down. We went for these lego ones :)

https://dqqzjdqmiszdy.cloudfront.net/sites/default/files/content_designer_images/frame_side_lego4.jpg

Only a few days until we go away no I have loads to do I feel stressed. Not heard from portage I assume she's still sick. I'm not waiting in I have a lot of things to do.


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## 4 boys

sequeena said:


> Welcome rebrrr :) I agree with the others even if it turns out to be nothing it's worth having everything checked out. You're welcome to post whatever you like :thumbup:
> 
> Thomas had his eye appointment this afternoon. Putting the drops in to dilate his pupils was a nightmare and he's been difficult ever since. His prescription has changed. One eye is better, one eye is worse. I'd completely forgotten this, I really should take notes but Thomas has an astigmatism.
> 
> Anyway, he's getting new glasses next Saturday. His eye doctor recommended Harry Potter style ones as he hasn't developed a nose bridge yet and the ones he has keep slipping down. We went for these lego ones :)
> 
> 
> 
> https://dqqzjdqmiszdy.cloudfront.net/sites/default/files/content_designer_images/frame_side_lego4.jpg
> 
> Only a few days until we go away no I have loads to do I feel stressed. Not heard from portage I assume she's still sick. I'm not waiting in I have a lot of things to do.

Love the glasses, spoke to you last time as I was struggling to get my son to wear his well he's got them on all the time :happydance:
He wanted fancy glasses when we chose his last pair but no we still need the thick plastic ones with rubber back so they not fall off.:nope:
His face is too thin and small nose so maybe next year :shrug:
Hope your keeping we'll take care :hugs:


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## sequeena

Aww that's a shame :( Thomas outgrew his very quick hopefully your LO will outgrow them soon too x so glad he's wearing them!


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## emyandpotato

sequeena said:


> Welcome rebrrr :) I agree with the others even if it turns out to be nothing it's worth having everything checked out. You're welcome to post whatever you like :thumbup:
> 
> Thomas had his eye appointment this afternoon. Putting the drops in to dilate his pupils was a nightmare and he's been difficult ever since. His prescription has changed. One eye is better, one eye is worse. I'd completely forgotten this, I really should take notes but Thomas has an astigmatism.
> 
> Anyway, he's getting new glasses next Saturday. His eye doctor recommended Harry Potter style ones as he hasn't developed a nose bridge yet and the ones he has keep slipping down. We went for these lego ones :)
> 
> https://dqqzjdqmiszdy.cloudfront.net/sites/default/files/content_designer_images/frame_side_lego4.jpg
> 
> Only a few days until we go away no I have loads to do I feel stressed. Not heard from portage I assume she's still sick. I'm not waiting in I have a lot of things to do.

Those are so cool! Where are you going?


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## emyandpotato

rebrrr said:


> Hi. I'm not totally sure if I belong here or not. My daughter is 23 months and recently been labelled as having mild general development delay. I have had concerns about her for the last year, and we have been seeing a paediatrician since she was a few weeks old due to feeding issues. As she still wasn't walking in Dec she was referred to the community paediatrician.
> 
> So we had a Ruth griffiths assessment a couple of weeks ago. On the day I was told my daughter was developmentally normal but just a late walker. So no further referrals or assessments, even though I was concerned about her understanding. But then I got the report in the post which painted a completely different picture. It put my daughter in the bottom 1%of children her age in all areas of development apart from one, where she was bottom 5%.
> 
> So worried call to the comm paed who said they hadn't realised how the scoring would come out and they want to see us in a couple of weeks. If my daughter still is 't walking there will be a physio at the appointment too.
> 
> I don't really agree with the results of the assessment. Not be because I think my daughter is on track, but because I think she is ok in some areas and she actually scored her best mark on language and hearing, which is an area I have concerns about!
> 
> I took it upon myself to print out the early years outcomes document from the department from education and did my own assessment. Generally speaking my daughter seemed to fit within the 'normal' range in the majority of areas. Her nursery have no concerns bout her development other than not walking. But I'm not sure if I am 100% convinced about their assessment either!
> 
> I'm not sure whether to just go with the comm paeds view and push for referrals for support in all areas. Everything I've read suggests the earlier the intervention the better. I've also downloaded some SALT toolkit stuff to start doing some work at home. I've also got massive guilt about working full time with all of this going on!
> 
> I really don't know whether I'm a fraud for posting here or whether I am just in denial! What would you push for in my situation? Like everyone here, I just want to help my daughter as much as possible and help to get her any support she might need. X
> 
> Thanks for reading that epic message!

I felt like a fraud too but everyone is so welcoming :hugs: I feel a bit melodramatic sometimes about Rory's delay because it isn't as if he has something like brain damage but the guilt and loneliness you feel as a parent is still there and it's so helpful to be able to talk to people in a similar boat. I don't know what to suggest you do with your daughter but what is best is probably to go with what your gut instinct tells you is best. If you think she needs extra help then push for it!


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## bumpin2012

Happy Mother's day to you UK ladies (I know its a bit late on your side, but its 1030 here!)


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## essie0828

Awww I didn't even realize it was mothers day across the pond ;) Happy Mothers Day Ladies!!


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## bumpin2012

So we had our big developmental assessment today. Overall, it was positive. Diagnosed with a mild Global development delay with significant speech language delays. Receptive Language was estimated at the level of a 13 month old, but his expressive language is better at around 16 months. At this point it's being recommended that he be followed by a pediatrician rather than a GP to monitor his progress and to continue with Speech therapy. 

That's us in a nutshell :)

Hope everyone is doing well!


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## essie0828

:hugs: bumpin. Getting the numbers sucks but now you know what to focus on. He will do great, I'm sure. It will just be a little extra work;) Bring on the speech therapy!!! I love going to DD's speech therapy, we do two sessions a week and I really look forward to them. Does he like sign language?? Lots of kiddos will start to speak words that they first learn to sign. Has anyone said if he has oral motor issues? Like does he chew well? Does he stick out his tounge? Does he touch the insides of his cheeks with his tounge? I know tons of exercises to help with that stuff, and some of them involve candy;) I'm happy to share anything I've been taught by DD's therapists in the last 6months :hugs:


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## bumpin2012

Thanks! Other than the 13 month part, I'm happy with it. It was a bit of a blow, but it could have been worse.

I don't think he has oral issues, he is a good eater, and can stick out his tongue. He doesn't seem to have issues with texture or anything. I'm calling the SALT center tomorrow to find out when we are being seen. They said 6 weeks, back in January. It seems that they have forgotten about us :( 

How are you feeling Essie?


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## essie0828

I hope they get to him soon. Waiting is crappy. 

I'm feeling pretty good which is worrying the hell out of me. Haven't been able to find a heartbeat on my doppler and my pregnancy symptoms are faint. Scan tomorrow at 1pm to see how things are going. Hoping for the best but prepared for the worst.


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## essie0828

Has little lady turned yet?


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## bumpin2012

Aww, honey. It might be ok still! I couldn't find little miss until 12 weeks! Keep us updated! 

Nope. She's insistent on remaining transverse... brat!


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## essie0828

Saw a wiggly lil babe with a strong heartbeat today :happydance: Lil thing was moving all over the place :)


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## bumpin2012

YAY! Sooooo happy to hear!


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## emyandpotato

Massive congratulations Essie!


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## RachA

Bumpin - that isn't too bad at all really. There's more of a chance that he'll catch up sooner as he's not too far behind :) 
Hearing the numbers is really hard-even if they don't come out as bad as you think they might be it always leaves you feeling a bit odd. You've got something to work with now which always helps. 


I've had to go through and sign the request for Esther to have a statement for her for school. It was pretty bleak reading really. Even though I know it all it just seems worse seeing it written down.


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## bumpin2012

Thanks RachA :) I think the number bothered me, because I want expecting it. But when I think about where he was 8 months ago, he was understanding nothing. Not even his name, so to me, 13 months sounds reasonable. The important thing is he IS progressing. 

Still waiting too hear from the SLP office. I called today, they told me he hasn't even been assigned to anyone yet. The last group session (in JANUARY) they told me 4-6 weeks. It's been 10. Hopefully they will get to him soon. I'm anxious to get things moving for him


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## RachA

That is the really important that-the fact he is progressing :) 
We have Esther's next 6 monthly review next week and although I know she has progressed I'm still nervous that she hasn't progressed enough.


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## bumpin2012

slow progression is better than no progression or even regression right? Hopefully it will be good news!


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## RachA

Thanks :)
Slow progression would potentially mean that over time she will get further and further behind. So while it's better than no progression, it still wouldn't be great. Up until now she's progressed at the correct rate so is consistently 18months behind her actual age.


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## bananabump

Congratulations Essie! Xx


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## essie0828

Thanks bananna bump! Just a couple months behind you;)

Rach I hope Esthers report goes well. :hugs:


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## emyandpotato

Sorry to be totally OT but I was just wondering, for those who's LOs have problems with gross motor skills, particularly walking and jumping etc, are there any shoes you could recommend as a sort of trainer type shoe? He has wellies but when we go out on walks he often trips in them but his other shoes are a smarter brogue style and probably not right for walking either. He's also in to climbing at the moment so a good grip would be ideal.


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## sequeena

That's the problem with slow progression :( T is a slow progressor too and it's meant his delays have jumped from 12 months to 15 months behind. FX he's got a little better.

emy Thomas is delayed with gross motor skills and he only wears clarks shoes. Currently he's wearing Clarks trainers. They have grip but not a massive amount I think. Wish I was more help but no-one has mentioned shoes to me before (except physio but that's different).

Butlins was wonderful. This picture sums up how much fun Thomas had.



Thomas' rash still hasn't shifted. I took him to the doctor yesterday who said it's perioral dematitis. He gave us an antibiotic but Thomas only had one dose as he had a reaction. Not a bad one as such but for around 15-20 minutes afterwards his saliva was working overtime. We were changing bibs every minute, eventually he was soaked and our floor was covered in puddles of saliva. It stopped very suddenly but it was a little worrying. He's been prescribed another antibiotic now. It's one he's had before so hopefully he won't react.

I hope everyone is ok :) we have a busy few weeks ahead. Soft play tomorrow, portage, Folly farm next week (my cousin's birthday), a family meal (mine and my cousin's birthday) and we're hoping to get away for 1 night sometime after my birthday (it's easter sunday), sometime around the 25th I think :) oh and he has a birthday party to go to on the 19th. He also has an audiology appointment on the 23rd.


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## moggymay

My eldest has weak ankle ligaments, perk of being prem for him but his hips were ok, he was a later walker but we were advised to stick with the shoes that were a cross between boots and shoes, effectively shoes with the higher sides like these https://www.charlesclinkard.co.uk/boys-c15/shoes-c16/geox-crush-boys-school-shoes-p1617?attribute[1]=1283 obviously these aren't ones you would go for as they are school shoes but they show the higher bit around the ankle compared to a standard shoe but less than an actual boot if that makes sense?

We are due to see the SLT again in a fortnight or so and are hoping to be able to confirm the plan for when J starts reception in September. Places are confirmed next week so getting nervous! Good news is that all his development is now within the correct range although that range is 30-50 months :wacko: his physical skills reach the 40-60 month range easily and his "self help" skills are going from strength to strength. 

I feel a little uneasy as to whether this is it and he is now catching up himself and the support should be withdrawn or not? I dreamt of the point where he was within the correct range for speech, now he is in it albeit potentially still 10 months or so behind worst case scenario I am worrying what happens now. I don't know what to expect when we meet her, can you guys help me with any questions you think are important to ask and have answered? At the moment we are just wanting to make sure the level of support he gets from his keyworker at pre-school can be maintained in school, he doesn't need statementing but he does need support which school have indicated they will be able to offer assuming he gets a place.... 

His speech is unrecognisable these days to the little boy who barely uttered a word, we had the speech explosion as more of a trickle that started a few weeks after his 3rd birthday, now he is learning new words and phrases all the time and he loves to sing, I was reminded how delayed the speech was though today when we were looking after a friends little girl, she was 2 last month and was copycatting me and trying to say what I said, Pickle never did that :( He is now making up for it though and am so proud of his progress, the SLT's have given us some fab tools to help him and his key worker has been AMAZING!!!

Looks like Butlins was fun Sarah :) Thomas looks likes he had great fun!

Do you hear about school next week too Rach?


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## sequeena

Hey Moggy that's great news! I would be honest, tell them your worries about support being withdrawn now he's catching up happydance:). I'm sure they won't all pull out at once it will be a gradual thing and it might not even be for a long while yet xx


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## emyandpotato

Thanks, I will look for ankle supporting shoes! I think I'll ask the paediatrician about shoes when we go. Sequeena, I don't like Clarks shoes as I feel I can't trust them to measure him correctly. Every time I go in his size apparently jumps up or down a size or two, even if it's a day later. My MIL basically thinks I lied about LO's shoe size cos he got measured as a 5 and then a month later the same place measured him as a 4...

A little update on us: Rory had a nursery assessment and got 0-9 months for speech, and 8-14 months on everything else. I practically had a break down because I thought that, apart from speech, he was much higher than this, and I was just really depressed for about a week and convincing myself I'd given him foetal alcohol syndrome and brain damage (I got drunk on NYE because I found out I was pregnant). Then he lost weight and that was the final straw and I took him to the doctors and basically broke down in the office and the doctor said that actually he looked fine, but he's given us a referral to the paediatrician, and a follow up GP appointment to check his progress. Which is such a huge relief I can't even put it in to words! So we're waiting on that, and still waiting on SALT, but at least things are moving! Also, we're getting attempts at new words, which is fantastic! Must say though, dealing with the terrible twos with a child that doesn't understand as much as others might, and can't express himself, is bloody killing me!


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## bumpin2012

I hear ya Emmy. G gets sooooo frustrated because he can't understand/express what is frustrating him! He's an extremely stubborn little guy too, and will continue to try and make something do what he wants, regardless of whether its possible. Nothing will make him happy, and I am having to take things away and move them to another room. (not easy to move furniture at this stage of pregnancy either!)


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## emyandpotato

bumpin2012 said:


> I hear ya Emmy. G gets sooooo frustrated because he can't understand/express what is frustrating him! He's an extremely stubborn little guy too, and will continue to try and make something do what he wants, regardless of whether its possible. Nothing will make him happy, and I am having to take things away and move them to another room. (not easy to move furniture at this stage of pregnancy either!)

Oh gosh I couldn't imagine being pregnant too! I am just at breaking point at the moment. He hasn't been well in about two weeks, and neither have I, and this just makes him in a worse mood. Literally all I hear is whine, cry, scream, full on tantrum, and repeat. He's driving me insane! And half the time it's because of something really basic like he wants something else to eat but he can't explain it to me and it's just so grating day after day after day!


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## sequeena

It is very hard when they can't tell you what they want.


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## bumpin2012

I think that's the worst. They KNOW what they want, but just cant tell you :( It makes me sad. G has started biting with frustration. Usually its his own hand, but this week, he's started biting my hand.


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## sequeena

Thomas is a biter too :( I have no tips other than putting him down and telling him he can't do that.


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## bumpin2012

that's what we're trying to do, as well as trying to give him the word. Right now we're working on help. :shrug: hopefully it wont last too long.


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## essie0828

Love the pic of Thomas! He looks like he's having a blast. Makes me smile. 

We have a swallow study next Wed for Hayley. Her eating has improved greatly but she will still hold food in her mouth and forget about it then choke. Kind of worried about the test as they use xray to watch her food go down and I cant be in there. Afraid she wont eat what they offer her and that her dad wont be able to get her to eat either. Her drooling is pretty bad as well and she's starting to spit in frustration. That's pretty embarassing. Her mouth will get full and insted of swallowing she will just kind of blow it all out. :dohh: Telling her "No!" makes her laugh her lil tail off. So I basically just have to cover her mouth and say "Don't spit!" Hasn't helped much yet. She's a biter to. We curbed it with her chews for a while but she bit her dad twice this last week. One was severe enough to bruise and break the skin. Ouch!

Her walking has kind of stalled out and she's refusing to walk without holding my hand when she was taking some independant steps. Wondering if her braces are in need of adjustment. Ordered a bigger size shoe (8!) hoping the extra room will help. She's getting kinesiotape done every Friday on her tummy. It's helping to give her some feedback about her tummy muscles and she's picking her legs up higher. She was able to get her toe in her mouth :haha: She seemed so happy to get to nibble on them, like she had been wanting to forever.


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## essie0828

Bumpin has lil lady turned yet?


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## essie0828

Love the pic of Thomas! He looks like he's having a blast. Makes me smile. 

We have a swallow study next Wed for Hayley. Her eating has improved greatly but she will still hold food in her mouth and forget about it then choke. Kind of worried about the test as they use xray to watch her food go down and I cant be in there. Afraid she wont eat what they offer her and that her dad wont be able to get her to eat either. Her drooling is pretty bad as well and she's starting to spit in frustration. That's pretty embarassing. Her mouth will get full and insted of swallowing she will just kind of blow it all out. :dohh: Telling her "No!" makes her laugh her lil tail off. So I basically just have to cover her mouth and say "Don't spit!" Hasn't helped much yet. She's a biter to. We curbed it with her chews for a while but she bit her dad twice this last week. One was severe enough to bruise and break the skin. Ouch!

Her walking has kind of stalled out and she's refusing to walk without holding my hand when she was taking some independant steps. Wondering if her braces are in need of adjustment. Ordered a bigger size shoe (8!) hoping the extra room will help. She's getting kinesiotape done every Friday on her tummy. It's helping to give her some feedback about her tummy muscles and she's picking her legs up higher. She was able to get her toe in her mouth :haha: She seemed so happy to get to nibble on them, like she had been wanting to forever.


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## essie0828

Emy I hope you and Rory find a middle ground soon. I've been there with DD a few times and it's super tough. :hugs: When she's not feeling well she is a terror.


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## essie0828

Ugh ignore the double post :dohh: Don't even know how I did that.


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## bumpin2012

Not as of last week. Her movements still feel like she's transverse. We're going to be talking ECV on Tuesday as I will be 36 weeks. I'm also seeing my chiro, and doing the spinning babies suggestions... NOT READY as this stage...Lol.


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## sequeena

Thomas does the same thing essie he thinks it's hilarious to let the drool out and it seems to be kicking up a notch too I guess I'll have to buy more bibs :(


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## essie0828

bumpin2012 said:


> Not as of last week. Her movements still feel like she's transverse. We're going to be talking ECV on Tuesday as I will be 36 weeks. I'm also seeing my chiro, and doing the spinning babies suggestions... NOT READY as this stage...Lol.

ECV? Is that where they try to turn her by hand. I've seen that before and well it looks kinda painful. So basically your standing on your head lots these days :haha: Stubborn lil miss. Really hope she turns soon and you don't need any interventions. Have you been able to do the pool thing yet. Does your hospital have a warm water therapy pool?


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## essie0828

sequeena said:


> Thomas does the same thing essie he thinks it's hilarious to let the drool out and it seems to be kicking up a notch too I guess I'll have to buy more bibs :(

Hayley can get some distance with hers. Was at her nutritionist appointment and she spit out about 3ft across the ladys desk. :dohh: So embarassed, but kiddo doesn't understand. The lady was very nice about it thankfully. If her swallow study comes back with anything abnormal we will start a new feeding class with her OT. He thinks its mostly her awareness of what's in her mouth. That she cant feel things in there like we do. So we will have to do things to give her brain feedback about what's in her mouth.


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## bumpin2012

Not been to the pool, I can't hold my breath underwater long enough to hold the position. No pool at the hospital either, but I am doing the inversion attempts for both transverse and breech babies... so not easy...

Egg is where they try and turn baby by hand. It's apparently 60-65% effective.


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## essie0828

Lol. I kind of forget that at 36 weeks you don't have much lung room left:haha: And being upside down has to make that worse. C-cection if she doesn't turn?


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## moggymay

Moxibustion to turn her?


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## bumpin2012

Moggy, I'm not sure what that is...lol.

Essie, csection will be my only option if she doesn't turn, even beech would be better at this point, as there is a Dr here that is old school enough and well trained/experienced in breech births. But, clearly, I don't get the choice of how she's going to sit...lol... she's proving to be a stubborn lass, just like her brother (and parents, for that matter)


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## moggymay

it is alternative therapy I think based on chinese medicine...my friend had a breech baby and didn't want ECV but tried moxibustion and successfully turned baby and had vaginal birth - he was a 10lb + baby too! Have a google and see if anyone near you does it?


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## emyandpotato

I'm sure you've probably tried it but Rory was sitting funny and I did an awful lot of walking and he budged round in the end!


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## bumpin2012

thanks ladies! at this point, im open to trying pretty much ANYTHING. I would really rather not have a Csection...

Oh, and I finally heard from Speech Therapy. Not only did they LOSE our paperwork, but when they called, the appointment that the offered me was May 13th... sigh. my flipping DUE DATE! Then she could fit him on May 7th...which is his birthday. I couldn't believe it. Finally, she 'found' him an appointment on Monday... I had to tell her that there was no way I could do appointments in May. That's just too close to my due date for comfort, and I didn't want to be dealing with cancelling appointments if the baby decides to make her entrance.


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## JASMAK

I hope you dont need a section, but if you do, read up on it. I have had three and there is still options to be a little in control, such as waiting for the baby exam and holding right away. You can still do a birth plan. I am sure its not the same as a vaginal, but I still found two births wonderful, even though one of those two were emergency. The other emergency one I was put under. And, I was in the pool swimming three weeks later, still breastfed. Try not to listen to horror stories. There are good ones out there. But, hopefully lo decides to cooperate!!


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## bumpin2012

I'm only adverse to a section because of the recovery time. Were moving across the country shortly after she is born, with a toddler, 2 dogs and a cat. I just don't have the time for a comfy recovery...Lol. she has to come out somehow! I'm fairly relaxed with birth plans in general. I don't think there is ever a birth that goes according to plan, and when they really don't, I find people feel more disappointed and heartbroken over their birth experience.


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## JASMAK

You know, everyone is different, of course, but I was out shopping 2 days later with my sections. Within a week I was pretty good....three weeks...normal. But, you are right...very few births go 'as planned'. ...and yes, def has to come out!!! Haha!


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## RachA

Moggy-yes we hear about schools for Esther next week too. Although she should get into our first choice as our son already goes there. 

The level of care your son has at the moment should carry on in school. I've been told that statement or not we will meet with the school a couple of times and go through what the preschool have been doing with her so that the same things will be done in school.


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## moggymay

We heard about school this morning :) We got our first choice so it means should be an easy transition. We are meeting with them a fortnight today to discuss :happydance:

Are you happy with the choice you were allocated Rach?


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## RachA

moggymay said:


> We heard about school this morning :) We got our first choice so it means should be an easy transition. We are meeting with them a fortnight today to discuss :happydance:
> 
> Are you happy with the choice you were allocated Rach?


Thats great :)
Yes we got our first choice which we are pleased with. There is still the slight chance that we may change our mind when we have to allocate a school on the statement but i think we will go with our first choice school because it makes more sense to have both children at the same school :thumbup:


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## essie0828

Racha and Moggy good to hear about your schooling situation. Glad you were both able to get schools of your choosing. :happydance: Hope the kiddos do well in their schools. 

Bumpin less than a month left...... little lady still sideways? I hope she has flipped for you. Had an ob appointment today myself and the wee bean is growing and doing good. My thyroid levels are slightly out of range so an increase in meds. That's a little concerning but the tests were just slightly out of whack and the baby is growing well so doc says no worries. 

Had DD's MBS (swallow study) today and news was good and bad. No reflux but it takes her several times swallowing to clear her mouth of even very small bites of food. Basically her muscles are weak and she is a very slow eater. Not really news to me as it takes FOREVER for her to eat more than a morsel. Always has. So we start the new feeding classes at the rehab hospital. I really hope they have some tricks to help her. She has been eating a lot better lately so some of the oral therapies are working we just have to up our game so to speak. This means more appointments on top of my ob appointments though. Struggling for balance with it all:wacko:


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## bumpin2012

yeppers. Still being stubborn. I'm booked for an ECV at 38 weeks if she hasn't turned. My dr is likely going to be doing a growth scan at that time as well, little miss seems to be experiencing the same growth issues that G had in utero :( Its early, but the pattern has been identical so far. So we wait and see.

Glad to hear things seem to be going well with your pregnancy Essie

Moggy and RachA: glad things are going well with school placements! that must be a huge relief :)


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## sequeena

:hugs: glad she's not got reflux essie good luck with the therapy!

T starts rebound therapy soon. Basically he gets to jump on a massive trampoline to strengthen his joints and muscles :)

Today I'm glad Thomas is delayed. We had our eldest dog put to sleep and before we got to the vet she was fitting in the house. He doesn't know what's happened so I've not had to explain. He's not even noticed she's not here anymore.


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## essie0828

Sorry to hear about your dog hun :hugs: I've got a little Jack Russell mix and she's very much a part of the family. It's hard to lose em :hugs: I don't think DD would notice if Tizz was gone either. She will pat her and play with her from time to time but to really understand if she was gone, I don't think she could. Really sorry for your loss dear :hugs:


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## essie0828

Bumpin has her growth stalled out or something? I hope everything is ok with her:hugs: Sometimes near the end the placenta doesn't do such a good job anymore. We had similar issues with DD. Her growth slowed down near 38 weeks. She had caught up by the time I had my c-section though and I think she would have been fine if she hadn't gotten stuck during the operation. It's hard not to worry, even after they are born:hugs:


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## bumpin2012

I'm not sure what's she's going to do. I'm hoping the issues G had were isolated to him. I stopped gaining any weight with him around 32 weeks, and then at 36 weeks my fundal height was 35, by 41 weeks, it was only. 36.5. We always thought that it was because I was so sick. I had a BPP done at 39 weeks and it seemed fine, only that he was going to be small.

This pregnancy had been so different, but I haven't gained weight since 32 weeks, despite my best efforts (I'm eating a TON) and last week (36 weeks) my fundal height was 35... if it wasn't due to my previous experience, I wouldn't think anything of it. I see my Dr again next week, if my fundal height is not at least 37, she's going to do another BPP, and check her growth. My Dr thinks that I might just be a woman who grows small babies (less than 7 lbs) and that it doesn't mean this baby will be sick like G was, or have the developmental/feeding issues that he had.



Sorry about your dog Sequeena. Pets are family members too, and it's hard to lose them. :hugs:


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## bumpin2012

Oooh, Essie, congrats on second trimester! How are you feeling?


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## nicki01

Sorry I've been away ladies! Been stressfully moving house! We are in now but still lots of sorting to do and Charlie has gotten very violent! She is purposely hurting us and her baby sister, she keeps hitting her with things :-( lots of bruises!

Quick question! I'm in a dilemma! Charlie still needs a pushchair all the time, she won't walk! She just drops and rolls however only 9 months ago I purchased a £600 double oyster max pushchair that is perfect! However today I noticed that she is over the weight limit for toddler seat and have read one story of someone's seat unit snapping as the toddler was to heavy! 
I need a double that will take a 2 1/2 stone toddler and a baby?? Tandem, not side by side and she won't sit on the bottom seat?
Anyone shed some light? I'm worried to use mine which leaves us stranded!


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## moggymay

fairly sure the Phil and Teds used to carry a 25kg child in the front seat and a smaller one in the rear....saying that I think they were bringing out a 20kg front and 20kg back version when we bought ours....that was 4 years ago though.


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## JASMAK

bumpin2012 said:


> yeppers. Still being stubborn. I'm booked for an ECV at 38 weeks if she hasn't turned. My dr is likely going to be doing a growth scan at that time as well, little miss seems to be experiencing the same growth issues that G had in utero :( Its early, but the pattern has been identical so far. So we wait and see.
> 
> Glad to hear things seem to be going well with your pregnancy Essie
> 
> Moggy and RachA: glad things are going well with school placements! that must be a huge relief :)

Hope things go well for you at the ECV. :flower:


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## JASMAK

Just popped in here to say we got our daughter into a social group. Its going to be a bit inconvenient, but hopefully worth it! Sounds like there is one more girl her age in it. I am a bit concerned about her being introduced to more germs, but, she has done pretty good these past two years, so I am trying to stress less. Who knew she could go a whole year without being admitted to the hospital?!


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## Peanut78

That's fantastic Jasmak!!! :happydance::happydance::happydance:

Bumpin, hope all goes well with the ECV :hugs::hugs::hugs:


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## bumpin2012

Thanks ladies. I *think* she may have flipped... had a night of super painful movements, and now I seem to be feeling most of her movements by my ribs. We will find out on Tuesday if it's needed :)


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## RachA

Jasmak-that sounds good :)

Bumpin-hoping that she has turned for you. Without sounding too dense-what's an ECV?


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## bumpin2012

It's called external cephalic version. Basically they try and manually move and turn the baby from the outside. They do an ultrasound during, to make sure baby is safe. It's apparently effective 2/3 attempts. I've heard it's rather painful, so I'm hoping to avoid it. It had to be done in the operating room, in case something goes wrong and baby is distressed, they will do an emergent csection. (Very rare)

It's not something you'd hear about unless you are facing one! I really feel like she's head down now... so here's hoping I'm right :)


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## RachA

Thanks-I've heard of it but didn't know it had a proper name. 
Hope you get to avoid it though :)


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## sun

bumpin2012 said:


> Thanks ladies. I *think* she may have flipped... had a night of super painful movements, and now I seem to be feeling most of her movements by my ribs. We will find out on Tuesday if it's needed :)

Good luck! I was booked for an ECV (in midwife's office), but in the end I didn't need one as baby flipped the night before! Fingers crossed yours flips before the ECV too. If baby was frank breech we would have had a natural birth, but he was footling so very glad he flipped!

Jasmak - Great news! xo


----------



## sequeena

:wave: hello everyone I hope you're all well :D

Thomas started a pre school disability project today and I am bursting with pride! He did cry and fell over a lot but he did it :D it's 2 hours every Monday and the nursery workers are so good with him. I am so excited to see where this takes us!


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## essie0828

Awesome news about Ts therapy sequeena. He will do great :hugs:

We lost our bean today and I narrowly avoided a hysterectomy. I had to have 2 units of blood and was intubated and have incisions in my abdomen from a laproscopy. DH is freaked out and says no more babies, it's too dangerous to try. For now, I agree. Hate to rain bad news on everyone but I figure you guys should know since I chat in here often. I'm pretty numb about it and just ready to heal up and focus on DD.


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## sequeena

OMG essie I am so so sorry. What an awful time for you both. What you've gone through sounds horrific :( so sorry for the loss of bean :( xxxx


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## RachA

Really really sorry about your news Essie:hugs::hugs:


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## bumpin2012

Oh, Essie. I'm so sorry hun. What an awful experience. Massive :hugs:


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## bumpin2012

Admitted to hospital for induction. Baby's measurements dropped off drastically, and on ultrasound she's measuring less than 5th percentile. Cervidil in at 2 pm, but she's having decelerations, and they aren't sure she's going to tolerate active labour. Hopefully baby decides to cooperate and make things ready on her mama.


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## JASMAK

essie0828 said:


> Awesome news about Ts therapy sequeena. He will do great :hugs:
> 
> We lost our bean today and I narrowly avoided a hysterectomy. I had to have 2 units of blood and was intubated and have incisions in my abdomen from a laproscopy. DH is freaked out and says no more babies, it's too dangerous to try. For now, I agree. Hate to rain bad news on everyone but I figure you guys should know since I chat in here often. I'm pretty numb about it and just ready to heal up and focus on DD.

I am very sorry for your loss. Please rest up and take care. :cry:


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## JASMAK

bumpin2012 said:


> Admitted to hospital for induction. Baby's measurements dropped off drastically, and on ultrasound she's measuring less than 5th percentile. Cervidil in at 2 pm, but she's having decelerations, and they aren't sure she's going to tolerate active labour. Hopefully baby decides to cooperate and make things ready on her mama.

Good luck to you. Has she turned then? Did I miss the update? Hopefully a smooth labour for you. Thinking of you.:hugs:


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## essie0828

bumpin2012 said:


> Admitted to hospital for induction. Baby's measurements dropped off drastically, and on ultrasound she's measuring less than 5th percentile. Cervidil in at 2 pm, but she's having decelerations, and they aren't sure she's going to tolerate active labour. Hopefully baby decides to cooperate and make things ready on her mama.

Oh no hun I hope you two are ok:hugs: Good luck hun. Let us know how things are going when you can.


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## sequeena

Good luck bumpin! Hope everything is going (or has gone) well xx


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## sequeena

I've posted this everywhere I can think of and of course it should go here too :)

Today is May 1st. It's the first ever Global Developmental Awareness Day. Here is Thomas' story.

We always knew Thomas was a little 'different'. After a traumatic pregnancy and a less than easy start to life how could he not be? He was a beautiful baby, always full of smiles and giggles for him mum and dad. When other babies his age started sitting at 5-6 months (some even 4 months) we didn't panic. He was our first child and we knew it could take a little longer. He did it at 8 months and we were so happy. He crawled 2 weeks before his first birthday. He never commando crawled or crawled backwards. He just upped and went and we were so proud. After he turned 1 year we started noticing he was that bit more different to other children. I worried a lot but told myself that he would be fine and he would catch up when he was ready.

January 2013 at 17 months old Thomas took his first few tentative steps. Within hours he was walking the length of the living room. Within days he was outside. We were shocked that he'd done it so fast but we were ecstatic and boy was Thomas proud of himself! My health visitor completed a 18-24 month check that same month and noted significant delays so referred him to a pediatrician. We were shocked. We knew he was a little behind but surely it wasn't that bad? 

At 20 months Thomas had his first Ruth Griffiths Assessment. A very in-depth developmental test. I wanted to cry during the test. He didn't understand what the pediatrician was saying. He couldn't do what she showed him. It was a long, stressful and upsetting test and she told us that Thomas had something called Global Developmental Delay. What is it? This is the definition of GDD:

A child may be described as having global developmental delay (GDD) if they have not reached two or more milestones in all areas of development (called developmental domains). These areas are:

- motor skills - either gross motor skills like sitting up or rolling over and fine motor skills, for example picking up small objects
- speech and language - which also includes babbling, imitating speech and identifying sounds, as well as understanding what other people are trying to communicate to them
- cognitive skills - the ability to learn new things, process information, organise their thoughts and remember things
- social and emotional skills - interacting with others and development of personal traits and feelings, as well as starting to understanding and respond to the needs and feelings of others.

Thomas, as it turned out was behind in every area of developmental. The developmental ages differed (as opposed to his chronological or true age) but overall he was 12 months behind. We were devastated and blamed ourselves. Did we not do enough with him? Did my pregnancy cause it? Or his start in life? His pediatrician assured us that we'd done nothing wrong. So what did this GDD mean? Would he catch up? We were told he would progress but he would never truly catch up with other children his age. That opened up so many questions and more heartache. Would he ever be able to go mainstream school, have friends, form relationships, live independently, have a family? We can't answer those questions right now but we live in hope that Thomas will be able to do all of these things and more.

GDD is not an official diagnosis. It is an umbrella term. Currently my child is a SWAN child (Syndrome Without A Name). We do not know what is causing his delays. However the RG tests have opened up a new world for us. We found out that Thomas has eye issues - long sightedness, astigmatism and a turn in the eye. He has bilateral conductive hearing loss (and is still undergoing tests to find out how bad it is). He has extreme hypermobility and hypotonia. It's not all bad news. He has some amazing therapists. Physio (and is due to start rebound therapy), a wonderful plastic surgeon and occupational therapist for his thumb (did I mention he was born with 3 thumbs?), Portage and he's just started an Action For Children pre school project where he gets to spend 2 hours every week in a nursery type setting with other children who have problems similar to him. We have just joined SWAN UK which is turning out to be a wealth of support and information and we will be meeting other SWAN children and their families this summer.

We have had tons of terrific support from our friends and family. They have been there for my horrific pregnancy, when Thomas was seriously ill, his surgeries, his other tests. They've been a shoulder to cry on when the responsibility of being a mum to a disabled child has rested heavily on my shoulders. They have sat with me at 3am and given me encouragement when Thomas refused to sleep. They continue to be a source of enouragement and inspiration - some are going through worse than us and still find it in their heart to give. We cannot thank you enough for everything you have done and know you will be there on the next leg of our journey - genetic testing. I don't need to name anyone, you know who you are. And thank you everyone for supporting GDD awareness day in your own special way. It means so much to us.

Thomas is currently 15 months behind in his development but he continues to surprise us every day. He is our beautiful soldier who has been through so much and keeps going with the biggest smile on his face. We love you little man.

https://i798.photobucket.com/albums/yy267/sequeena1/DSCF1088.jpg


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## aliss

I've enjoyed seeing Thomas grow up :)


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## sequeena

aliss said:


> I've enjoyed seeing Thomas grow up :)

:hugs: Well, it is never boring with him around :haha:


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## bumpin2012

Sequeena, lovely story!

Baby girl is here! She's tiny, but healthy. Jillian Nicole, 5 lbs 14 oz. She has a FULL head of dark hair and is quite the snuggle bum :)


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## RachA

Bumpin - hope everything goes really well. Looking forward to a good update from you.

Thanks for sharing Sequeena :)


We've finally had Esther's next lot of speech therapy sessions through, after waiting nearly 6 months!! It's at 10.30 on a Thursday morning. This is so annoying on so many different levels. It's a preschool day and is right in the middle of the session - depending on if i have our car and how long the sessions last for then it's possible that she won't even get into preschool for any of the 6 sessions. It's also pretty much the one day a week that i actually have something that i do each week so i've had to do a load of rearranging. But i've not been able to rearrange a couple of things - mainly, i am working at a polling station for the european elections one of the weeks and it's our wedding anniversary the next week and i had plans for that. I know i shouldn't complain but i find it all so frustrating. At the end of the last block i specifically asked for the sessions not to be on a Tues or Thurs am. I tried rearranging and basically if i cancel those sessions we go back on the waiting list and by the time another block become available she may well be at school and therefore the speech therapy is different. I just wish that her ST had been much more consistent - she's been having it since she was 2 1/2 and there has been a 6 month gap between each block. I'm sure that over the course of 2 years she should of had more than what equates to 15hours of therapy.

Sorry rant over!


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## RachA

bumpin2012 said:


> Sequeena, lovely story!
> 
> Baby girl is here! She's tiny, but healthy. Jillian Nicole, 5 lbs 14 oz. She has a FULL head of dark hair and is quite the snuggle bum :)


Congratulations. Glad you are both ok :happydance:


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## essie0828

Super congrats bumpin. I'm so glad she's here and healthy:happydance: Enjoy the little darling, and I love her name. Beautiful! 

Sequeena T is such a handsome lil guy, he's coming along so well. You guys have done great with him. The rebound therapy and nursery group will be great I'm sure. 

DD is making progress with her walking. She doesn't need a kaye walker anymore but she still isn't walking long distances just yet. She will begin additional OT and feeding classes soon to help with her oral motor issues and hopefully with the drooling. She's getting much better with it and the drooling is down to a minimum since we have been doing the tummy strengthening exercises and kinesiotape. She's still a GDD child but she's getting much better and the therapies are the key. The more we do the better she does although it's at her pace. I'm very proud of her. :hugs: to all you mamas that are raising kiddos with delays.


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## essie0828

Racha that sucks that there isn't more times avaliable for her ST. And 15 hrs total seems pretty minimal. I hope they can open up some more slots for her. How's she doing with preschool? She like it?


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## RachA

essie0828 said:


> Racha that sucks that there isn't more times avaliable for her ST. And 15 hrs total seems pretty minimal. I hope they can open up some more slots for her. How's she doing with preschool? She like it?

Thanks. 

I was quite shocked when i realised that she'll of only had 15 hours ST by the time she starts school in Sept - it really doesn't seem much. Once she's had this next 6 week block she won't be offered any more sessions before starting school. Once she's at school however there is a high possibility of us paying privately for a ST to go into school each week if we think she needs it.

She loves her preschool - in fact from what we can tell she isn't too fussed on the idea that she'll be moving to school in Sept. Although once she's started at school and has made a connection with 1 adult then she'll be fine. She kind of gets quite dependant on an adult in settings like that - she forms an attachment and they are almost like a mummy substitute when i'm not there. Thankfully she's able to move about the room and play but she likes to check in with her chosen adult every 5 - 10 min or so!


And it sounds like your DD is doing well :thumbup:


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## sequeena

Oh congratulations bumpin I'm so happy for you!

Rach I so understand. T last had speech therapy in November/December so we're at the 5 month mark. I had to make a point of asking when his next block would be when I was in the playgroup on Monday. It'll be 'soon' apparently. Another 2 months then :coffee:

Essie I'm so pleased she's doing well. It's definitely about going at their pace. Thomas was on one shape sorter for about 6 weeks but we wouldn't swap it until he managed to complete it fully.

I actually... have no hospital appointments!! :happydance: aside from portage and playgroup I am hospital free for now. WOOHOO!!!


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## nearlythere38

Hello ladies, Im sorry I havent been on for a while. We had a very busy few weeks caring for Ava, visiting hospices and in and out of hospital.

Sadly Ava passed away on the 30th April, peacefully in my arms at the hospice. Heartbroken :cry:


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## Tor

Oh no nearlythere. Im so sorry to read your news about Ava, I cant imagine how you are feeling or what you are going through right now :hugs: RIP beautiful little lady xxx


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## maisie78

Oh nearlythere I am so sorry for your loss :'(


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## sequeena

Nearlythere I am so sorry for the loss of your precious daughter. I cannot imagine what you are going through. Please know that we are here for you if you need to talk :hugs:


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## RachA

So so sorry to hear about Ava. Words aren't enough so sending hugs your way :hugs:


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## nicki01

I'm so sorry to hear about Ava. My heart breaks, sending much love. 

Love your picture of Thomas sequeena. He looks really impressed with the top!you have come so far with him, he is doing great! 

Congrats bumpin, can we see a pic when you have time! I just love teeny weeny babies!! Mines huge now at almost 10 months!! Lol.

Sorry for your loss Essie, hope your resting up and taking it easy. As much as your little lady lets you! ;-)

Sorry if I missed anyone but my brain is frazzled with toy story right now! I've been made to watch 1,2 & 3 every day for nearly a week now! I'm lucky if I can get the little monkey in the garden for half an hour! She is obsessed with buzz and woody!

Started the early bird last week (its a 3 month course about autism ran by the national autism society) got session 2 tomorrow and i can't wait! Met 4 other mums there who are all lovely and learnt lots of info in just one session! Its great, I got homework too! Its ran in a school in a class room so it really is like being at school again. I never ever thought I would want to go to school, how things change when you grow up!
What's everyone been up to this sunny weekend? 
We bought a sandpit that Charlie likes and watched LOTS of toy story!


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## sequeena

:hugs: for everyone. How are we?


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## Peanut78

Nearlythere, I am so terribly sorry for the loss of your precious daughter Ava :hugs::hugs::hugs:


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## annanouska

So sorry the hear about baby Ava :hugs: 

Hope you don't mind me dropping in again its been a long time though I have still seen a few of you about.

I think the time has come to accept we belong here now :thumbup:

I think my post is still on the page from a couple of weeks back. Basically my lo had a speech regression and coupled with his oth quirks it may be autism. They are running an EEG hearing and vision tests too plus had his bloods done. 

He starts salt next week or rather goes for his assessment :haha: 

I'm a bit up and down about it all ATM mainly as its all so waffles still I don't. Ally knw what is happening and what I can do to help him. 

He can say hiya daddy and oh no now ( he went from about 15 words to 0 now back to these). He doesn't play with other children, doesn't communicate at all other than screaming and points now too. He has behaviour quirks and little things but il not bore you now. 

Thanks for listening didn't really feel right time to jump in with all the sad news in here so apologies for not great timing girls :hugs: :flower: x


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## bumpin2012

Here she is ladies :)

She's wonderful. G adores her, he's very loving towards her. He's acting out a bit and testing boundaries, but overall adjusting very well
 



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## essie0828

Bumpin she is Beautiful! What a beautiful family :hugs: Thanks for sharing your pics. I'm sure G will adjust very well. Congrats mama! 

Thanks again to everyone for the well wishes. Doing much better and getting back to our routine. DH goes back to work today and I am solo with DD. Really looking forward to it because I have missed being her primary care giver. Got some fun stuff planned for us after her PT. She has gotten to watch way too much tv over the last week and I am going to try to keep us both busy as possible. If I see Elmo one more time I think I'm going to go :wacko: She is a complete freak for Elmo. Weather is nice here today and we are going to play in the sun as much as we can. :hugs: to everyone.


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## essie0828

Anna it's tough to accept a diagnosis but it will help you to help your LO. Good luck with Salt, hope you guys can get started on therapies soon. :hugs:


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## sequeena

Ann :hugs: it is a roller coaster of emotions and appointments. You're welcome to come and talk to us whenever :)

Bumpin beautiful pictures xx

essie :hugs:

Thomas is getting a new set of wheels in a few weeks. Wheelchair services rang today and said they're giving us a wheelchair for him :)


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## Peanut78

Bumpin congrats - thanks for sharing those beautiful photo's :cloud9:

Essie, as you know I'm sorry for what you have been through, happy you are feeling better :hugs:

Sequeena, friggin ecstatic you have some of the support you need (on some level anyway!) :happydance::happydance::happydance:

Anna - agree with what was said earlier - so hard to accept a "diagnosis" (in many ways I'm still not there 3 years on!), but it does mean you are able to access services :hugs:

Nearlythere, you are in my thoughts :hugs::hugs::hugs:


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## sequeena

Yes nearly there thinking of you and Ava :kiss:


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## bananabump

nearlythere38 said:


> Hello ladies, Im sorry I havent been on for a while. We had a very busy few weeks caring for Ava, visiting hospices and in and out of hospital.
> 
> Sadly Ava passed away on the 30th April, peacefully in my arms at the hospice. Heartbroken :cry:

I didn't realise you were in this thread too Em. The lanterns last night looked fab from the the pics.. I hope tomorrow goes well. Always thinking of you xxxx


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## bananabump

Congratulations Bumpin.. she's beautiful!! Xx


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## maisie78

bananabump said:


> nearlythere38 said:
> 
> 
> Hello ladies, Im sorry I havent been on for a while. We had a very busy few weeks caring for Ava, visiting hospices and in and out of hospital.
> 
> Sadly Ava passed away on the 30th April, peacefully in my arms at the hospice. Heartbroken :cry:
> 
> I didn't realise you were in this thread too Em. The lanterns last night looked fab from the the pics.. I hope tomorrow goes well. Always thinking of you xxxxClick to expand...

I take from this that Ava's funeral is tomorrow :( Sending big hugs and strength to you nearlythere that you get through the day xxxxxc


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## Misstrouble19

we had a meeting about my son yesterday and the SEN person put it down to global delay.. delayed in all areas and again my partner is so calm about it and i do all the worrying about it. he will be having a medical have not got a date but its really nice to know that theres so much support on it... ''parents with kids who are so clever'' have not got a clue at all.. none of my friends are in the same situation as me. no matter what he is always my little boy anyway special needs or not... Rhys is currently nearly 3... and hes just started to say 2 word sentences.. but should be saying 3 or 4 apparently? im doing everything i can but tried the flash cards last night and they are great


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## RachA

Hi and welcome to this thread :)

Sequeena has given you loads of advice so i don't think there is anything to add there.

Is Rhys having regular assessments? With Esther we've been having 6 monthly assessments and for us the benchmark is whether or not she has stayed at the 18 months behind and not if that gap has closed at all. At the end of the day we figure that if she is still 18 months behind at 18 is it really that big a deal. Obviously an 8 month delay does seem a huge amount when they are only 3 but in a few years time it won't be so bad. 

It's awful when you first get told about the delay as so many things go through your head. I think i am the fairly calm one out of me and OH (although the day we got told about her delay i did burst into tears on the HV's shoulder!). OH tends to think the total worst scenario so i feel like i have to be the strong one. So on the outside i'm dealing with it fine but on the inside i have says that i am a total wreck. Maybe your OH is like that?



Well Esther's SENco is going to a panel meeting on 21st May to see if she is going to be assessed for a statement. All the paperwork has been done so if we are given the go ahead the result will be out pretty quickly. We've also spoken to the school and have set up another meeting with the SENco at the school, the headmaster, the yearly years inclusion person, her current SENco and us parents. 
She's also back at speech therapy for 6 weeks from this thursday and has other meetings to do with school so we are back to feeling like life is all about meetings to do with Esther being a 'problem' rather than Esther just being a child!!!


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## bananabump

Misstrouble19 said:


> we had a meeting about my son yesterday and the SEN person put it down to global delay.. delayed in all areas and again my partner is so calm about it and i do all the worrying about it. he will be having a medical have not got a date but its really nice to know that theres so much support on it... ''parents with kids who are so clever'' have not got a clue at all.. none of my friends are in the same situation as me. no matter what he is always my little boy anyway special needs or not... Rhys is currently nearly 3... and hes just started to say 2 word sentences.. but should be saying 3 or 4 apparently? im doing everything i can but tried the flash cards last night and they are great

Leo has only just started saying 2 word sentences aswell.. big followed by one of the words he can say : tee for tree, car, pah for plane or ball. He'll be 3 in August so it sounds like he's quite similar to Rhys? I'm here if you want to talk xx


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## Misstrouble19

thank you for your support... Rhys has currently been on the school action plan.. but that wasn't for him so they are going to get him on school action plus... i do think he may be statemented.. he can say car, shell (my name).. (phil) for his daddy... but he has been saying 3 word sentences today so hard to tell where he actually is at... i dont know alot about special needs. luckily enough he has a cousin that he is close too who is just a year older than him.. have you both got facebook or anything so i can have a chat xx


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## sequeena

This is my FB you should be able to add me


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## bananabump

Deleted


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## moggymay

Ho hum I feel a little of a fraud still being here now :-k Pickle was assessed a week or so ago by SLT and they are mega impressed with how he has come on, the explosion of words since he turned 3 has been amazing and they now assess him to be "at an acceptable range for his chronological age" which means were he assessed today for the first time they would deem him to be ok to leave with no specific SLT support. Due to the fact they have been working with him for nigh on 2 years they are keeping him on their lists but not giving any specific therapy or support only monitoring.

I feela fraud asking this because I know we are lucky to have seen the improvement and for the fact he is catching up and is level with his chronological aged peers. However my concern remains because he is only 22 days short of the next school year....were he younger by those few days he wouldn't be starting school in September, if this were the case I would have no worries or concerns regarding him catching up and being able to learn and cope with phonics etc and learning to read. I am full of what ifs but SLT say it isn't a worry until he can't do it....surely once that happens we then will be waiting again for our turn for help. I know and accept the list is long but I am really worried all the good work we and he have done mean he will struggle if the support of his key worker is withdrawn (SLT don't really do much other than support his pre-school key worker and SENCO as it is they who carry the load and work with him and us).

I am not expressing myself very well here but is it ok that he is with his chronological peers an ok point to cease support given his school group peers are 95% older than him....I know this will always be the case in terms of age but these years are vital in establishing his basic learning blocks.

What would you do? I have asked at the school if it is possible to meet with school/pre-school/ourselves to discuss and as they know us (we have an older child already at the school in the SENCO's class) they have agreed. Do I push for the SLT to attend the meeting if we get one?

To go from being behind to level is amazing and I am so proud of him just I worry if we take the support and bring about the change of pre-school to Reception will the momentum drop and he fall behind again.....I am finding it hard to just watch and wait and see :help:


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## RachA

I can understand your worries as I too wouldn't want my child to drop behind sgain. You obviously know the school so know how they work. I know with my sons school they do a lot of small group work based on ability and they really support those that really need it. 
I'm not sure if SLT really need to be involved once he's at school but it would be worth setting up a meeting with the relevant people in the SLT just for your peace of mind. You should be able to keep things that are in place now in place in the school setting. I know that in our area all schools use the first half term to assess each child and see what help they need. You will of raised flags already so they should keep an extra eye on him. I don't know for sure but my assumption would be that if she's caught up he shouldn't fall back again. 

He starts this Sept doesn't he? 

My son wasn't behind but he was also an Aug birthday and when he started he basically knew nothing - he's just about on target now but then he is a slow learner.


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## Misstrouble19

my son is also a slow learner.. but then again so am i so that may explain the way my son is... but yeah good to hear your sons in front now but if your concerned then go back to SALT and explain to them they can't refuse to help you or mention to your health visitor x


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## sequeena

Moggy I agree with everything Rach has said. I'm so so pleased for you you must be so proud!

Thomas got a magnetic fishing game from portage today :thumbup: still working on a 3 piece puzzle and shape sorter. We're getting there slowly :)


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## Tiff

Claire has a late birthday too (Dec 19th) and we opted to keep her out of JK as she was en route to a diagnosis and we didn't want her to start the school year without an IEP in place. We instead sent her to an inclusion pre-school for two afternoons a week.

I can understand your worries though hun! RachA gave some great advice. :hugs:


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## moggymay

Aw thanks ladies. A lot of his progress has come from the mystery story bags and the alphabet bags that our initial group SLT/portage lady put us on to whilst we were on the waiting list for 1-2-1 sessions. We still do them for the letters he is less clear on; and for words of animals he needs to say better if that makes sense?

My older son is a July baby and has had no real issues with school, but I know other children who weren't able to get the phonics thing and fell behind in the beginning are still that little bit behind in the literacy areas now in Y2....but what of that is due to parents not putting in the time reading with them I don't know :wacko: We were set a number challenge with school ages ago whereby they would give the child a certificate for every 25 reads they did at home so effectively it meant 1 certificate a month provided the children read most days of the week - a read is 10 minutes reading aloud an age a reading level appropriate book - certificates are being issue to children today who have reached 200 reads and there are still others who are yet to reach 25 :( Sadly school can only do so much. Makes me realise how lucky all our babies are in this group because they have parents who realise and accept we have to help our babies and to fight for outside support when they and we need it.

In a way I am hoping to be able to post in 6 months time that we don't need SLT support anymore even in the nominal sense. Wish it was made more aware that the "averages" of when and how many words a child has means some won't get those words until the very end of the age range as Jack's speech literally exploded after his 3rd birthday but since 18 months I was stressing he wasn't speaking enough as he had done the "average" thing from the get go with everything else.

My little boy who when I first posted was delayed in speech and still in nappies and asking to be fed is now chatty, toilet trained day and night and can ride a bike on his own....just need to teach him better brake control :dohh: 

Thanks you for being here ladies :hugs:


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## annanouska

:flower: 

Salt assessment went a little worse than anticipated. Based on his regressed level where has Been for some months he is between 12-14 months behind for speech and communication :wacko: 

The salt lady suggested his play was behind too but not sur that's her remit to advise really? 

She wants to leave him under care of his paediatrician and a speech lady will be coming to our house. We are on a waiting list for sign a long which may be around September. I'd like to start sooner but can't find much about it. 

Somebody will be going to his nursery to see how they can help :thumbup: 

Autism was mentioned again, I'm frightened tbh. Although he's behind he's still funny and animated I'm afraid he will loose it all and become distant and vacant but I've not masses of experience with autism so I know it does vary :shrug: 

She gave us leaflets they were very pointless as ey all had activities that need the child to have atleast some words, nothing to help him who can say daddy and hiya :dohh:


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## sequeena

Moggy you must be so proud of how far he's come I'm so pleased for you both x please keep popping in to let us know how he's doing :)

Ann :hugs: 12-14 months sounds like a big gap but try not to panic. T is somewhere around 15 months behind (probably a little more now) but with the right support they can rapidly catch up.

As for autism being mentioned try not to worry until they are seriously considering it. For now work on building up his vocabulary and signing. I learn makaton signs off the internet and teach them and it's obvious but keep talking. It hasn't really helped Thomas with new words but I live in hope. I don't think he'll suddenly become withdrawn as you say there's a huge spectrum.

AFM I had a random letter this morning from the child disability team saying they're doing a visit this Wednesday :shrug: I rang them and found out that the community nurse and disability health visitor will be coming out. I had no idea why... then she said the referral was from July 2013 :dohh: :rofl: 

Honestly I don't think they can do much for us but it's good to meet everyone involved with Thomas. I think I saw the HV at nursery on Monday but she was there to speak to another mother. The HV said she can help with things like sleep and oh is your son potty trained? No... Well we can help with that too. Yes good luck with that he's not even aware of his bowel movements :thumbup: oh they do make me laugh at times!!

If I'm ranting here on Wednesday you know why :rofl:


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## bumpin2012

:hugs: Annanouska. Its a scary diagnosis (G was evaluated) but remember that the spectrum is huge, and many kids who fall on the spectrum are funny and animated.

We were finally seen by Speech, and will be seen monthly for assessment and strategy planning. We are also looking into a pediatrician to follow G's progress. We are being seen at the clinic at the hospital, but I can't just make an appointment outside of the monthly clinic. Our GP office closed and left both myself and G without a dr. Because of Miss J, I was able to find a GP to take her and I on, but still have no one for G.


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## nicki01

Annanouska Try not to dwell on whether its autism, it sounds scary and to read about is hard but as someone already said the spectrum os huge, my daughter was diagnosed as autistic in November but she is still the cheeky little devil I had before!
It hasn't changed her, she is still a massive drama queen, the funniest person I will ever meet and has THE biggest character. Whilst she does have distant/vacant moments these are minor when you look past them and instead at how wonderful she is.
Its just a word, a label, an explanation of there quirks and struggles. 
I'm still scared of the future but your little one will always have that character, because you know its there, you will see it.
Sorry I've rambled on a bit there! Just hate to see people afraid of autism, whilst it is hard going at times and very unpredictable its just a word really, the diagnosis changes nothing really, it puts support and help in place.
Hope that's a little bit of reassurance if you got to the end!


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## sequeena

What can your child say/do/massive brag threads... hate them but I'm always drawn to them.

I must really like torturing myself :dohh:


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## annanouska

Me too sequeena it's hard esp when they moan at 18 months they only have 40 words!! 

What has everyone's children done recently? 

M tried to wave today. He also coped in a crowd better. He got upset and distressed but not a complete meltdown. X


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## sequeena

Well done M :thumbup:

I can't think of anything specific that Thomas has done recently :wacko: my brain is feeling a bit fried it's been so hot today.

Today was my cousin's 5th birthday. When asked what he wanted to do he said he wanted to eat out so we went to our local family friendly restaurant. Thomas always enjoys being round his cousin's but now they're getting older they don't really want to play with Thomas :( Thomas doesn't care and I know they're only children but it upset me :cry:

Also today was the first day that I had to explain to a child that Thomas is a little different. It was.... interesting.


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## annanouska

:hugs: shame about the others not wanting to play with him. It does happen with all children but hard when you know it's harder for your child to gt along anyway :flower: 

I've had to explain to parents but never another child. Children lack the awkwardness so ask a lot more questions but tend to be more accepting on the whole i would imagine. 

It is sooo warm isn't it? We have been playing in the water tub in the garden, he loves water.

Do any mummies here have bed issues? I know t struggles with sleep we seem to be alright Ish once asleep but seems so over stimulated to drop off its a big fight. We wind down have quiet time etc dark room but nothing really works then its up at crack of dawn again :shrug:


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## sequeena

OMG yes T is like the duracell bunny :rofl: there was a period of time where he got better but now he's back to being a shit. The other day he was up for 16 hours.

The weirdest part is by 8pm T is ready for bed. WOOHOO! However an hour later he's up... then he's up again... and again... and by the time 10pm rolls round I'm ready to chuck myself out the window because T thinks it's play time. I can get him back down between 12-1am which is better than 3am but my God I am so freaking ready for this kid to sleep through. I know now his separation anxiety probably has a lot to do with his horrific sleep but I do think that he needs melatonin... not just for sleep but to just calm him down as he looks like he's on crack 24/7 :shrug: next time we see his pediatrician I'm going to ask. She only refused last time because of his age. I am not doing sleep clinic. I don't believe in CIO and T reacts very badly to it.


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## RachA

We started Esther's next block of ST last Thursday. She is consistently understanding on a 2 word level now and they are going to check her 3 word level this week. 
I'm really frustrated though. Since she was 2 & 3 months her ST has been 6 weeks then a gap of 5/6 months then another 6 weeks etc. they are now changing it and are offering children 6 weeks in then 6 weeks off etc. it would of been so much better if Esther could of had it like that from the start!!! The good news is that they will keep offering her the ST at the clinic even when she's at school :) 


Been feeling really down about everything for the last 4 or 5 days. It's getting closer to her starting school and I just don't know how's she's going to do it. All I can see is that by the end of reception the majority of the other children will be able to read a bit and write a bit. And unless a miracle happens there is no way she'll be able to do that. The only thing she can draw at the moment are scribbles and the odd circle! And she doesn't recognise any numbers/letters. 
So many things are becoming obvious to us-she'll be entitled to the free hot dinners but I can't out her down for them at the moment because unless she has an adult there to help her she won't be able to eat it. We've had to fill in a load of forms to take to the school-we've signed them but we are going to have to talk to the teachers about some though. There are things like school trips-if she doesn't have someone with her she will just walk into the road or run off! And we has to sign a form to say she's allowed to use the school computers etc and she'll take care of them-she wouldn't have a clue how to take care but if we don't sign the form she won't be able to do any computer stuff. 

I guess I'm just feeling sorry for myself at the moment and worried about the gap getting bigger. I'm worried that she's going to be seen as the 'odd' kid who doesn't get invited to any parties because she can't talk to the other children and who wants a child at their party that doesn't talk etc. 

The only good thing at the moment is that she's been approved for being considered for a Statement and her SENco isn't having to go to panel to fight for this which means they consider her 'bad' enough and do a statement is more likely.

ETA: also took her passport form to the post office today to do a check and send and they said they might not accept her photo as she's smiling in it. Pre 4/5 they don't mind but as they get older they don't allow smiles. I had to say that there is no way I can get her to do a neutral face because she just doesn't understand - it was hard enough getting a picture as it was as she wouldn't look at the camera. So I've had to use my 'she has special needs' card for the first time and it's made me feel awful.


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## moggymay

Rach there is a child in DS1's class who has a full time TA just for him and to support him in school, he is statemented (I am not sure exactly what for) he is in class with them and plays with them at breaktimes, eats with them at lunchtime he just has support just for him throughout the day. At lunch there is a person to cover his TA and they are there to support him with whatever he needs. 

He is one of the most popular children in the class purely because the children see him as "X" to them X is their friend who likes shapes (obessively likes shapes) he is prone to meltdowns but they accept him and the meltdowns and don't stigmatise him for it as to them it is just how X has always been. There is a little girl with a lazy eye, she sometimes wears a patch but the kids don't even notice. Whereas to an adult we notice ginger hair, skin colour, glasses, mismatched clothing etc a child of 4/5 doesn't know to do this unless they learn the behaviour from someone else, bullies are rarely born that way they learn the behaviour from someone or somewhere. 

Esther will have your support and love 100% and so long as she is happy in school she will learn and she will cope, your job is to ensure she has the support she needs to make her happy and then she will start to learn. I am sure you found with your son that the key thing is parental support - be it reading to them and with them, drawing and practising shapes and lines and later letters and numbers with then, you have to be there and behind her. It is my biggest bigbear at school when parents don't support their children in their schooling, she has you so she is already on a winning path :hugs:

As for school meals the consensus amongst many of DS2s peers is that they will be having packed lunches as we aren't sure they would eat the meal options except on a friday when it is fish fingers! A friend of mine is a dinner lady at school and if you notify the school that your child is a slow eater or needs assistance with cutting up food or similar then they will go out of their way to help - there is even a slower eaters table at our school, DS1 isn't aware of it but staff and dinnerladies have confirmed it is there. 

In terms of the school computers, I doubt they will be too complex or valuable, they are quite hardy and letting her join in will help her. So long as they know she is respecting them as much as she can they can accomodate and adjust their expectations and supervision accordingly. Have you got a meeting date with the school to discuss your worries before she starts? Maybe even before the traditional meet the teacher just a meet the school head/deputy head/senco to help you get your head around how best to work together to help Esther.


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## annanouska

:hugs: don't think I could add anything to what has been said :flower: 

I did write lots but it didn't seem very helpful :dohh::hugs:


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## RachA

Thank you both. That was so helpful. 

We've already had one meeting with the school. She has her stay and play in something like 2nd July and then we have another meeting on the 9th or 11th July (too many dates to remember so it's a good job I have them written down). I'm really hoping that we know by then if she's getting a statement. If it's looking like she won't get a statement then after the 9/11th we'll be having at least 1 more meeting with the school to discuss things.


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## bumpin2012

rachA, that sounds very stressful! :hugs: I can't add anything that will be helpful, but I hope everything works out for your girl


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## sequeena

Oh Rach good luck. I was actually discussing a statement with T's community nurse and disability HV today. It sounds so stressful and takes at least 6 months. Then you're not even guaranteed to get one! :(


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## RachA

They are changing how they do them and from september they aren't going to be called statements. I think that once you get to the point that they are definitely going to assess for a statement then they are saying the child definitely needs help. The criteria then is how much help. Schools, in theory, have the resources to provide the first 17 hours of 1:1 and if its more than 17 hours then a statement is more likely to be issued. 

We have slightly bypassed the system as when we sent the request in for the la to consider assessing for a statement we also sent in all the evidence needed (we were advised to do this by the la). So although we should only be at week 6 of the process we are actually at week 12 so we should know in 6 weeks if she is going to get one or not. I actually takes a maximum of 6 months - by week 18 of that you will know if one is being issued and if not then you appeal.

It is stressful but i can cope with that as it's definitely something that she needs. The thing i found the hardest was writing our report on Esther as it was so bleak.


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## annanouska

:hugs: rach you wait until she's in the Christmas play :flower: I had the hv with us yesterday and we got on to school. She said the children are so accommodating with children with additional needs and there's not the same awkwardness you get with adults. 

We had a play date with m's little friend today, he struggled a bit more than usual for some reason but he ended uploading peekaboo with her arou d a curtain.

No idea why he likes her and can tolerate her where as can't others. He did gt a bit rough tho and tried to run her over with a ride on car:dohh:


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## Tiff

:hugs: RachA... you sound exactly how I did last year when I thought of all the things NT kids could do but Claire could not. :hugs:

I'm not the beacon for all things Autism parents or anything, or what kids with SN can do vs NT kids. I found that the comparing to things drove me CRAZY and I just had to stop focusing on what other kids could do, and on what Claire was doing and her own individual progress.

It is SO tough. SO SO SO SO SO tough. I see the reports, cards, drawings, letters, notes that my friends kiddos write for their parents, I saw them at Claire's birthday party where pretty much every card was a homemade card from one of her classmates. It broke my heart. Claire can barely write her name, she has a tough time holding a pen/pencil and she's just not there.

I struggle with what to say to parents who are in the same boat, but maybe a bit later on than what Claire did. We're not the guideline, iykwim? But I hand on heart believe that she will find her path. And no, she may not be on par with what the other kids can do but she will progress, and she will learn things. <3 

If there's anything I can suggest, is to keep in constant contact with her teachers when she gets to school. Don't be afraid to be "that parent" (something I struggle with) and question things if they don't feel right, ask for clarification on things and be involved as much as you can. :flower:

Claire gets a communication book sent home with her, and I caught her teachers in glossing things over with her. We had new neighbours move in, and their son is a year ahead of Claire. He was quite distressed one day coming home from school as he saw Claire sitting out in the hallway with her EA crying. He didn't understand why she was upset. Her note for the day? "A good day!!!!". :nope:

So when I questioned it, I found out that her crying out in the hallways is a normal thing! She's been in school since September and only at the end of April I was finding out that "A good day!!!!" meant her crying alone in the hallways? :growlmad:

Now they're more forthcoming with her having a rough day, and the teacher ended up calling me and explaining things. But still. 

Ugh. I hope I am not scaring you more for an already scary time!!!! :nope: Just don't be afraid to say things and whatnot and don't be afraid to question things either. :flower:

For what it is worth: I was worried about Claire being the "odd" kid as well. But at this age for the most part kids don't pick up on how different they can be. :hugs: When I pick her up from school, she's got about 5 different friends yelling "bye" to her and that they'll see her tomorrow. :flower: 

It is SO tough being a SN parent. :hugs:

Sorry for the novel :blush:


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## RachA

TIFF-thank you so much. Your reply nearly brought me to tears in my local coffee shop (as have the other replies). 
When I first started posting on her I felt I was a bit if a fraud because my daughter was *just* speech delayed. But you've all been so wonderful and supportive and so helpful. 

I think it's just the whole unknown thing you know?! Once she's at school I'm hoping it won't be quite so up in the air. 

I've never wanted to be THAT parent either but I know from the past 2 years of Esther being at preschool that I need to be. I regularly chat to her key-worker for 19-15min at the start it end if the day and I also talk to her in the phone to catch up with things. I don't think in going to get that kind if service when she's at school! 

Tiff, I think that's awful that you've only just found out Claire is crying at school. I hope they are being much more honest with you now. That scares me about school because I know the teachers aren't 100% honest about what goes on although in some instances it's because they find actually know!

Thanks again :)


And Tiff, just noticed that you live in Ontario. My sister who's been my support for the last few years has recently moved to Ontario!


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## annanouska

:hugs: rach I felt a fraud too but now I realise all of us in here want the best for our children and face similar struggles due to their delays and disabilities etc. 

My hv suggested picture cards for us whilst on the list for sign language? I'm presuming along the lines of PECS but they won't send us to any training and the proper pecs guides are very dear. I've noticed he's pushing and grabbing more recently out of frustration to try
And tell us something. Any experience on here of how to go?

There was a girl at the park today. The girl seemed ok but :blush: :wacko: her mummy was shall we say disengaged :dohh: she was there on her iPad not even watching the girl ( about 3 Ish?) she was following my lo so close behind him then chasing him as he tried to get away. He was getting really distressed so I took him well away nd tried to calm him but she kept following then shouting at him :dohh: this was breaking point and he bit all his fingers keeps spinning sound in a circle then crumpled in a corner upset :growlmad: the mum started shouting at her girl to leave him alone so I just calmly told her he has some additional needs and does t play quite the same,d to which she tutted and told me not to bring him to the park! 

Sorry for the rant, just upset me and irritated me!


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## sequeena

OMG! I am furious for the ann! What did you say to her? 

Well fuck me, heaven forbid that a PUBLIC park be used by an additional needs child. Heaven forbid that the mother put her ipad down for 30 minutes and play with her own daughter?!

Things like this make me so angry. Today someone on a FB group said that if we decide to keep our disabled children then we should be prepared to pay everything for them. I went into a massive rant. Our children deserve to live on this earth as do all other children.

People who hold these ignorant and prejudiced views disgust me.


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## nicki01

Wow them comments I've just read are awful!
I hope your not to down Ann, that's so nasty. And I'm glad you had a rant on fb sequeena.

Things like this make me very relieved that I have a child with additional needs and not someone like that, although I'm sure there attitude would swiftly change! Sad really.

Rach I haven't forgotten about you!! My appointments are just starting to slow down a bit and I'm a bit more settled in the new house (although not completely and not very happy here but that's a whole different story lol) 

Would your LO be happy to go to a park?
Thinking when we have nice weather back maybe we could meet at a toddler friendly park one quiet morning? Or a quiet cafe somewhere?

I can't do ball pits or anything noisy and major busy as it sends Charlie loopy! Lol. Unless she is in her pushchair being fed ha ha!


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## RachA

Ann-that's terrible, I can't believe people can be so ignorant. 

Iro the pecs type stuff-I haven't done the formal training for it because Esther was really passed the point of being able to do it properly. I would suggest doing a communication board to start off with. Basically use an a4 sheet of paper (landscape). Write/type 'communication board' across the top and have 6 box outlines. Inside these out some Velcro. The print off 6 little pictures of things that you know he likes having/playing with/doing (I chose strawberries, milk, bed, bath, jigsaws & Duplo). Then if she wanted any of those she had to go and get the picture and being it to me and I would say something like 'Esther's wants...?' Once he is doing that well (even if he's not saying the words) you can progress to a book. Once you get to that point you can ask me the. How to set it up. Esther didn't respond well to the book. 


Nicki-I know what you mean about people like that. My mum said that really special people have children the have special needs. I that kind of sounds like it's saying that 'normal' kids aren't special but that's not how it's meant. I guess it's saying that it takes a special kind of person to deal with children that have additional needs. 

We could definitely do a meet up at a park. I would suggest after half term as it'll be busy over half term. There are a couple of nice parks in Christchurch and one on the cliff top. I tend to avoid Littledown as it's too big and unless I literally trail after Esther I can too easily loose sight of her. I don't tend to do soft play areas as I pay and Edther ends up not playing!!


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## annanouska

:growlmad: sequeena your comment made me more mad! How rude!! 

Thanks for the tips Rach going to give that a go, glad you told me to have 6 rather than loads of them!

Interesting about soft play, mine just wonders around but really seems to like it! He will climb and o down the slide. He loves the ball pit. If its busy tho or noisy he can't cope. 

He doesn't like crowds and loud noises. But it's certain noises, the Hoover is ok :thumbup:

My hv is calling in each month? Is that normal? She said its just to chat and offer support. She's quite nice tbh and got him his referral when he lost all his speech really quick.

X


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## sequeena

Yes it's normal I had monthly visits for a long time then it went to 3 months. I've not had one for a long while as my HV left and I've yet to meet my new one... though T now has a disability HV too :wacko:

T also isn't massively keen on soft play. He loves it in the sense that there are a lot of children there but he doesn't like the actual jungle gyms so I pay for him to run round really :haha:


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## moggymay

jealous of you guys getting to meet up....we went to a fab park when we were on hols in Bournemouth when DS1 was small....on the Poole side and it had a train that went around too :)


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## RachA

annanouska said:


> :growlmad: sequeena your comment made me more mad! How rude!!
> 
> Thanks for the tips Rach going to give that a go, glad you told me to have 6 rather than loads of them!
> 
> Interesting about soft play, mine just wonders around but really seems to like it! He will climb and o down the slide. He loves the ball pit. If its busy tho or noisy he can't cope.
> 
> He doesn't like crowds and loud noises. But it's certain noises, the Hoover is ok :thumbup:
> 
> My hv is calling in each month? Is that normal? She said its just to chat and offer support. She's quite nice tbh and got him his referral when he lost all his speech really quick.
> 
> X

Yeah too many will confuse him. Get him solid on those first 6 then introduce the book. 

We've never had the HV call each month but she does attend the meetings that we have roughly every 8 weeks to talk about Esther's progress. She's nice though so I wouldn't have a problem if she did check up every month.


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## RachA

moggymay said:


> jealous of you guys getting to meet up....we went to a fab park when we were on hols in Bournemouth when DS1 was small....on the Poole side and it had a train that went around too :)

I assume that was probably at Poole Park. Was there a lake too? 
We're quite a distance from there but I have been to the park a few times. The hospital where Esther has her check ups is in Poole.


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## moggymay

Yes, we fed the ducks :)


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## RachA

:) 
It's lovely there-takes about 30min for us to drive there though so don't often go.


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## Blueberri

I feel like the only adult with a disability or two!


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## moggymay

I love having a park like that, far enough away to make it a treat but close enough to be a looked forward to yet relatively cheap afternoon out :) The relief of having the space to let them be free when they don't quite understand danger is lovely - and enough time to catch them up should they leg it!


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## annanouska

:flower:

Hi everyone. Hope everyone is well, we are ok nothing new going on. We have our pecs cards sorted trying little and often but he doesn't seem to get it just yet :haha: 

Is it normal to feel on a complete emotional roller coaster? I'm ok with things, I still love my ds obv and know he loves us too tho he rarely will hug or kiss etc. I just feel like its my fault right now. I don't know why I just think I should be doing more, playing with him more reading more etc to him but he doesn't like it. Very rare will he let you play with him, he can't sit still for a book. I just feel I'm not doing enough to help him :dohh: 

Pointless but have any if the little ones stopped playing with toys? My little guy mostly wonders around opening and closing doors or doing random things. He's not completely in a bubble he does play at tines just seems totally uninterested in toys. His fave thing ATM is a cd in a cd case :haha:


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## moggymay

Have you tried a drawstring bag with a few different toys inside....some animals or some random items starting with the same sound....a book, a ball, some bubbles, something blue, a bowl etc so he can hear the sound but they are all different, leave the bubbles to the end and after say 5 mins of him playing if he is getting bored or losing interest let him help blow the bubbles, its good for the muscles that help with speech :)

We used to sing with ours..."What is in the bag today, what is in the bag today, what is in the bag today, what's in the bag today NAME" You can learn the signs for what and bag and today and sign as you sing.

I miss doing it now as it was fun making the bags for the different letters and stories. We only have a few now to accompany a couple of stories.


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## RachA

annanouska said:


> :flower:
> 
> Hi everyone. Hope everyone is well, we are ok nothing new going on. We have our pecs cards sorted trying little and often but he doesn't seem to get it just yet :haha:
> 
> Is it normal to feel on a complete emotional roller coaster? I'm ok with things, I still love my ds obv and know he loves us too tho he rarely will hug or kiss etc. I just feel like its my fault right now. I don't know why I just think I should be doing more, playing with him more reading more etc to him but he doesn't like it. Very rare will he let you play with him, he can't sit still for a book. I just feel I'm not doing enough to help him :dohh:
> 
> Pointless but have any if the little ones stopped playing with toys? My little guy mostly wonders around opening and closing doors or doing random things. He's not completely in a bubble he does play at tines just seems totally uninterested in toys. His fave thing ATM is a cd in a cd case :haha:

I totally get the emotional roller coaster thing! 


Out if interest does you son have lots if toys that he has easy access to? If so thus could be the reason why he wanders around and doesn't actually play with anything. We found this with E-we had loads of toys (both hers and her brothers) and she rarely played with anything. We were advised to put most away and leave maybe two different things out for her to choose from. We left out the Duplo and a box of jigsaws. She then started playing with either 1 or those two things.


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## RachA

We have a meeting tomorrow (later today I guess!) with someone to discus the results of E's genetics test. Not worried about it but think it should be quite interesting. At the moment they don't think her delay is anything genetic as u have the same abnormalities that E's got and I wasn't delayed at all.


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## annanouska

:flower: good luck for today rach. 

I will try the bag idea with him, he probably will get angry that I'm not doing it right then try and throw it all! 

We have a little stack of three boxes with toys in in corner of room. He can only get the top items out so I do the put a few things out for him, eg trucks or books or a happy land thing. He still doesn't rally do anything :shrug: I've tried to play with him to show him but he prefers to throw things ( unless its a ball :dohh:) or drive over them with his ride on BMW :haha: think I will raise it with his next clinic in July.

His favourite activity is being outside, honestly he just loves being out, he likes running up and down hills too...how I'm still fat amazes me hehehe

We have hearing test Wednesday and EEG Friday :wacko: I do wonder if he has glue ear at times as his ear looks quite funky and he gets really irritated by it if it gets wet but his hearing seems to be really good. 

Hope everyone is ok a few familiar faces missing recently :hugs:


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## bumpin2012

how did your meeting go Rach?

life is crazy here! Everyone is doing well though :)


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## sequeena

Hello everyone sorry I'm not around. A little swamped right now.

hope it went well rach x

T's doctors had a ecs meeting (educational care something I think). He's being put onto a pathway which is when he will see an OT. From what i was told this is also how they'll do statements from september so it seems to be a good thing that he will be on it.


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## sequeena

They use a box at SALT - tap tap box tap tap box tap tap 'name' what's in the box?


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## annanouska

:hugs: glad you are ok sequeena and bumpin, hope Essie is ok an don't had any more complications :flower: 

I've seen you say before sequeena they do patience first at salt, I can see him being totally un helpful with the box or bag just yet :rofl: I'm going to try them, right now he would just either gt up and walk off, try and steal the box and descend into chaos if he can't or open it and gasp :haha: he's so funny so expressive with gasping when he wants but makes no attempt for any more. I'm trying to tackle his routine thing ATM we have little visuals he likes :flower: x


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## essie0828

Hi ladies :hi: 

Thanks anna :hugs: all is well here. Finished my last course of antibiotics and had thyroid meds upped. Starting to feel a little more energetic. 

DD and DH are battling seasonal allergies. Pollen counts are really high and even I have had itchy eyes lately. Other than that DD has been making wonderful progress. All of her therapists have noted her improvements and complemented us on our work. She actually said "Hi" to her First Steps speech therapist for the first time. We've been working with this lady for 8 months :haha: Everyone was thrilled though. DD does ok with the pecs but will prefer to point to the actual object and sign want. She's signing want and go a lot more. Kid loves to go places or to just be outside. Ordered her a sand and water table for the patio. Mabey we get lots of standing play out of it.


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## sequeena

oooh we have a sand and water table for Thomas he adores it. It's even better if you can get hold of coloured sand! Large marbles are good too (obviously supervised).


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## RachA

Thanks all. 

It was an interesting appointment which has left me feeling a bit odd if I'm honest. 

We were told it was an info meeting and didn't have Esther with us and we should if taken her lol. So we have to take her again!
The genetics dr went through everything with us. Basically E (and me) has an extra bit on either her x or Y chromosome (can't remember which girls have lol). This extra bit isn't effecting anything. Then she has a bit missing (again so do I) on chromosome 2. This missing bit could well be causing her speech delay but at present they can't say 100%. All they know is that all the children they test with delays have this bit missing. But obviously people can have it missing and not have any issues-like me. If you have it missing then you are at a much higher risk of having a delay. 
Also if she has a child with someone else and they gave the same bit missing then that child has a 1in4 chance if no delays, a 2 in 4 chance of minor delays and a 1in4 chance of the child being very seriously delayed. :(
The bit that left me feeling rubbish was that external factors will of played a part in her delay. So basically a certain part of her delay is down to how she's been parented. I know it's not as simple as that and I don't think that's what she was saying but that's how it made me feel. 
I'm feeling ok about it now though.


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## bumpin2012

bah. I dont believe in the "if its not genetics its parenting" thought. G had nothing different on his genetic testing. He's just delayed. I will say its 'parenting' if Miss J has the same delays, and so far, she's doing things on schedule (as much as can be done at 1 month old!)

Your not a bad parent because your girl has issues. Your an awesome parent, because you recognise the issues and are getting her the help she needs.


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## RachA

Thanks for that bumpin. 
I guess it's not as simple as it being down to parenting and I don't think that's what she was saying. More than external factors effect how prevalent the issues are. So if she was the first born rather than 2nd that MAY change things ever so slightly. There are probably a million little things that could of effected her. 
I do however know that there are things I should of done differently but I know there is no use thinking and worrying about it. I was very anxious to make sure my son didn't feel pushed out so for the first 8 months I would feed E and then put her down in the cot/in her bouncy chair/on the play mat-so the interaction between us was really so minimal. She was a very easy baby and very content so I just enjoyed the fact she didn't whinge when I put her down. However I did carry her a lot-rather than use the pram I quite often carried her and when I was at home without D I would arty her around most of the time. I didn't talk to her much though-D progressed well even though I didn't talk all the time to him so I didn't see the need.

I do think a major stumbling block for her has been the infrequency of her speech therapy. She's has 4-6 months between her blocks of sessions and her sessions were just for 6 weeks-a total of 3 hours each block. I think had she been given it more frequently then she would of progressed more.


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## sequeena

Rach massive hugs. As already said it is not your parenting. Anyone can see you dote on your children and do everything you can for them. Just because they can't find something right now doesn't mean that there is not a specific reason :hugs:

I'm starting to think SALT is a joke. I know they expect us to carry on the work at home which is fine but when you see a therapist a handful of times a year how are you meant to carry on for the rest of the year?

It is HARD trying to get a child to speak. I see children all around us coming out with new words with seemingly no input from their parents yet I sit with my son daily and sing songs, make up games, repeat the names for things over and over and it seems to go in one ear and out the other. How the hell do other parents manage to teach their children how to speak?!

But you're damned if you do damned if you don't your son has progressed fine of course you'd do the same with Esther. Honestly I think this would have happened no matter how much or little you spoke to her.

How is everyone doing?

Thomas has oral thrush :( he's had 5 courses of antibiotics in about 2 months so I guess it was a matter of time.

He also has sores/ulcers on the insides of his cheeks because he's been biting them :( I'm hoping it's a habit thing and he's not noticed he's doing it but honestly I think it's another form of him hurting himself. He's recently started biting his lip when he's upset so it's possible he's biting his cheek too. I didn't know he was doing it he seems to feel no pain at all and they look very sore. So I'm alternating thrush gel and bonjela. He is not happy about my finger being in his mouth and neither am I!!

Monday morning Thomas' portage worker and I (and of course Thomas) are checking out the nursery that O gam i gam (charity that provides support workers) has suggested. They veto'd another one we picked because they couldn't put a support worker in there. Anyway, fingers crossed it goes well. It will mean Thomas will get another 5 hours a week in nursery so 7 hours in total. I think that is possibly his limit. He struggles with 2 so we will need to go very slowly.


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## essie0828

Sequeena I second the thought thst it's damn hard to teach a child language. It's very hard and without the extra therapy it has to be harder. Salt seems so minimal :nope: I think they should offer you guys more than 6 week blocks. Racha you to. That's ridiculous to offer such little support and then say the kiddos development was affected by parenting. Hayley gets 2 one hour speech sessions a week along with 2 one hr physical therapy sessions and one occupational therapy session. That's 5 hrs a week not in blocks through out the year. If we didn't have that I would be lost.


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## bumpin2012

ideally, yes, all the interaction we give our children helps them. G was a fussy " don't even think of putting me down" kind of child. the only way he got any tummy time was on my chest. that boy had constant interaction, and he's still delayed. I really don't believe that there is anything you did our didn't do that has you on this road :hugs: E is exactly who she is meant to be.


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## bumpin2012

we're all good here. miss J is gaining weight like a champ. I was getting worried because she seemed so unsatisfied with breastfeeding. well I head nothing to worry about, she is up over 2 lbs since birth... G is doing so good as a big brother. he adores his sister to the point of being a bit over bearing...


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## Feathers

Hi ladies apologies for the long absence, trying to read and catch up with you all! I agree Speech and Language is so hard! I'm on the Hanen course right now which is all about how to communicate with your child (honestly do they think we don't?) and it's been...well it's very up and down. Whilst I'll take any and all advice on how to help DD, they turned up to film on a day when Olivia was pretty sick, she wasn't communicating at all, just sat there holding her bear and ignoring everything. Of course we tried our best to get any communication from her (signing, body signals, sounds) and then we got told we were talking too much and we should wait for her. I honestly felt really cross because if we waited for her on a day like that she would just sit there and we'd be waiting ALL day. Surely we should create opportunities for her to communicate rather than just waiting for her to make one when it's clear she isn't going to. Frustrating! I don't think they know how hard it is to try and make everything into a positive communication opportunity when (like a PP said) other children around them just pick it up naturally. 

Equally frustrating is the fact we have a fantastic centre for helping children with Speech and Language delays. Sounds great we thought, we know lots of the children whose parents are on Hanen attend the nursery there where they get specialist help for 6-8 months, they have fantastic success rates with children who don't speak at all. Then comes the stinger, Olivia cannot go because they will only take children who JUST have speech difficulties. Because she has other development delays (even though her speech is the worst one) she cannot go and misses out on a service that really could make a difference for her :( Im just really annoyed about it but there's nothing I can do.

We've had a horrid time with constipation and fecal impaction (honestly its been one of the worst things yet) and it's led to some toileting issues. She is now terribly upset at nappy change times despite the fact we've cleared the impaction, obviously it's sticking in her mind which isn't good because toilet training isn't going well as it is.

Our positive news is we were successful in our application for DLA for her which means we'll be getting some extra money to buy things she needs and take her more places :) I'm torn between being pleased about her getting something to help her and sad because she needs it. But then isn't life always like that with children with extra needs?


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## annanouska

:hugs: feathers the dla is fab news, it can help I get resources and activities to help your child which is brill :thumbup: I've never applied or thought of doing so just yet I don't think my LB is " disabled" enough yet :wacko: 

Rach :hugs: I felt really angry for you reading that. How wold it be different if she was the sole child etc? My boy is the only one and still has difficulties. I'm well educated enthusiastic and engaging with him, he's still a zombie quite often :haha:. I also did the feel out down not carry around constantly baby phase. Maybe I should have been more of an attachment style mummy maybe that would have helped but he hated it. He hated hugs he hated being rocked and held etc so I can't force him.

Essie nice to see you, you always brighten the place up :flower: 

I second the language discussion. On our assessment I was told to make him ask with words for things not point....no tip on actually getting him to say a word! He periodically parrots now but very rare and will oly parrot go and no. 

His hearing test was all clean no issues. We have the early years team coming to our house next week, no idea why to be fair :haha:xxx


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## RachA

Feathers-that's great re the dla. We've got to fill our form in. I used to deal with benefits before having my kids and I'm so not looking forward to it. 



Had a total meltdown with my OH earlier. We've got building work going on that's been ongoing since Oct last year and it's really getting to me and along with E's stuff I think it all just built up. I usually try to make sure I don't shout at OH in front of the kids but I was just so upset that I lost it. E was there and was laughing at me shouting. When I gave her a cuddle after age was looking at me wondering why in earth I was crying!!! 
Think I need to draw a line under today and start again tomorrow!!


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## emmi26

Hi 
Can I join in ? My little boy Harry is 3 he has autism, global development delay, hypermobility, and hypotonia he's non verbal and we have just gone through the ehc plan process and Harry's plan will be finalised in august he will start at special school part time in September :) we are in the pilot area for ehc plans if anyone goes through this new process and needs a hand I'm happy to help if I can we have found it actually ok and had wonderful help from Harry's specialist early years lady :) 
Onto Harry he's the cutest little man always happy and he constantly flaps at everything he loves water and water spray give him a sprinkler in summer and that's it you won't get him out again that's for sure !! 
He's non verbal but babbles constantly wee wee and woo woo are his favourite noises lol he's in nappies he has no idea what any toilet stuff means and he doesn't understand hardly anything he has to be shown which is hard cause he doesn't make eye contact either. Harry also still eats baby food he can't cope with lumps his low muscle tone means his suck swallow isn't that good and his autism means textures make him sick if it's not something he likes too . 

Anyway nice to meet you all :) Harry's newest thing is to throw things and he's just chucked an empty bottle at me which I'm taking means he wants a drink of milk lol 

Emma


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## annanouska

:hugs: Harry sounds great! You sound very upbeat too :flower: I'm quite new to the group my son is 2 soon and on assessments for autism, epilepsy and " learning difficulties" . He is non verbal too as lost all his speech months back. He does have great eye contact tho and very animated. 

Pointless excitement but today he held any empty cup to my mouth fr me to play drink, most interaction ever from hm x


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## emmi26

That's brilliant !! It's the tiny things you really notice and that are big achievements :) Harry could say a few words before his second birthday but he stopped as well but he regressed and stopped speaking. 
I've just been up to find Harry no longer wearing his pyjama bottoms or his nappy I have no idea why lol but Harry found it funny lol 

Sometimes you have to laugh 

My other half has nocturnal epilepsy he fits in his sleep so I know that's scary too hope your little one is doing ok with that at the minute :) 

Emma


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## sequeena

Hi emmi your son is similar to mine he has GDD, hypermobility and hypotonia and a few other problems. My son isn't non verbal, he has some words and signs but he is nowhere near he should be at this age. He's around 15 months behind.

Can I ask what a EHC plan is? It rings a bell. My son is going through something similar he's being put onto a pathway which from September is how they'll do statements for school. He's not going this year but it's good to know we will have the appropriate steps in place for when he does go.

Ann that's great news about your LO I am so pleased.

AFM Thomas has been doing quite well recently but his walking is suffering. He can bounce on the trampoline for a while and potter round in the garden but trying to get him to walk anywhere is a struggle. Fingers crossed he'll have his wheelchair by the end of the month :)

His understanding seems to be getting better too which is a massive help. Today he has passed me the TV remote when asked, nodded when he wanted a drink or something to eat and shook his head when I told him it was bath time :rofl:

He can also now sign 4 nursery rhymes. Not perfectly but my God it's amazing to watch him.

Sleep is still a massive issue. I feel like he will never sleep through.


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## emmi26

Hi 
Aww he does sound like Harry :) Harry walks like a little drunk man his low tone and hypermobility make him wobbly :) 
Your little man sounds like he's making some big steps bless him :) Harry's also getting his wheelchair by the end of this month he was measured up for it a few weeks ago .
Ehc plan is the new statement from September all statements will be an ehc plan it stands for education health and care plan they last for 25 years once awarded. The plan is a legal document written by your council all the people involved in your child's life are asked to fill in a section stating what help support and care the child needs so Harry's has had statements from his early years specialist his consultant his physio his speech and language therapist it all goes onto the plan and then the council state how much support your child must receive in school so if your child is going to mainstream school the council might award full support meaning your child would need their own carer in school. Harry's needs are high level so his plan states he needs specialist education meaning special school which is what I wanted for him anyway. 
It's all to protect them and so that all their needs are met Harry's plan states he needs 4 hours physio a week this will be provided in school if they didn't they would be in serious trouble it's a legal requirement for them to follow the plan and give the support stated it protects your child by making sure they get the right support. 
Definitely worth thinking about the plan can be altered so some children have one and get 6 hours a week support meaning for certain lessons like our little ones would need support in pe even if they were perfectly ok in every other area. 
Hope that made sense lol 

Your little man signing nursery rhymes sounds amazing ! Bless him what a clever little man :) Harry's early years lady tried to teach him a basic sign but he doesn't understand his autism means he finds most things hard to understand poor little man was terrified by this mornings thunder storm :( found him quivering in his cot screaming :( 

Hope your little man keeps up the good work :) 

Emma


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## emmi26

I've just been upstairs to find Harry has managed to rip down his curtain wrap it round himself and fall asleep I'm not even sure how he reached it !! 
Sometimes I wish I knew what goes through his mind he's been full of it today pulling on anything and everything and laughing least he's happy :) 

Emma


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## annanouska

:haha: Harry sounds really funny. I've just got curtains for Los room as even with a blackout blind its bright. I can see this happening to us too :dohh:

Emmi we have to back back for another EEG this time a sleep one. No idea why they wouldn't tell me anything but I'm thinking its odd to be recalled? It needs doing so that's that maybe its to check like your OH that its not a sleep fit thing? 

I just presumed it would be normal or not normal and wed go from there. All they said on phone was dr looked at it today and wants us back for a sleep one. 

Language...we lost all speech but I've managed to get 4 words back of a sorts but only if I say them to him. Eg I will say daddy he will copy daddy. He will never volunteer these words or say like he understands what they mean? Not sure if this is a developmental thing or a sign of echolalia tho I think he's a bit too small to notice that? Ill mention it to the development team coming on Wednesday.

I got told today by somebody he's defiantly not autistic as he is so smiley and looks so normal ( evidently ALL autistic people are meant to look,like aliens!) :wacko: this is true, he does seem very happy but I never mentioned the autism possibilities his neurology paediatrician did kind of thought it was a stupid point :dohh:

How is everyone doing? I'm excited to see if either Harry or Thomas get those groovy wheelchairs with patterns on the wheels! X


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## sequeena

Breaking my heart here I'm struggling with T's violence he managed to cut my cheek open yesterday. It's not deep but it hurts. I almost broke down to the nursery manager today and she's promised to get onto OT. I know it's not my fault but I feel a complete failure I am losing control of him but I'm not sure I had any control in the first place.

I'm also excited for his wheelchair no news yet though. FX it'll be here by the end of June.

What dumbass told you that :rofl: don't they know that autism has a SPECTRUM :rofl:

Yay for the words! No idea if it is echolalia but at least he is saying them. Almost all of T's words are only said if I say them first xx


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## sequeena

Also the repeat EEG is a bit wtf :shrug: why don't they ever tell us anything?


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## annanouska

:hugs: oh sequeena if it helps I shut his stair gate on his room and walked off yesterday and made a cup of tea :blush:

I have the worst bite he's done on my arm its broke skin its horrid plus a bite on the cheek too and several pinch and grab marks on the arm :cry: I was so angry ( know its not his fault) and sore that I had to walk away.

It's not your fault nore his its just how it is :flower: I don't really know how to deal with it. I just say I won't let u bite me and try to redirect but doesn't always work.

Its annoying we don't get told stuff do they not think we then worry?! X


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## nicki01

Sorry not been around much lately. Hope your doing ok with school bits and bobs rach. Welcome to the new names around! 

I've been struck down with tonsilitus all week, just started to eat again 2 days ago as the 10 day course of anti biotics have started to work and I've woken up today with my eye swollen half shut and a really bad head ache! Don't know whether to go back the doctors or not.
On a better note, Charlie sang the whole hello song today with the other children at nursery and was the train driver on the sound train, no idea what that is, but its social and she has never done it before 

She has just tipped a bag of sausage rolls on the carpet as their is pastry everywhere, debating whether to put the Hoover on before it gets trodden in but tori has JUST gone asleep and it will wake her up! Hmmm.... Decisions! Lol.


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## rebrrr

Hi everyone. Sorry that I didn't post again after introducing myself before. Not even sure when that would have been now. March I think after I got the results of the Ruth griffiths test. I have been stalking this group!

Things are still up and down here. My beautiful girl started walking a few days after her 2nd birthday in April. She was just so pleased with herself! We actually had a follow up with the comm paed and a physio in the Monday afterwards. It turns out that my daughter is slightly hypermobile, and has particularly bendy ankles. So she has now got some supportive boots and has physio every 6 weeks to try and catch her up on the gross motor side of things.

The comm paed wanted a genetics blood test to rule anything out there. Waiting for end July for the results. My daughter is also on the waiting list for a three half-day assessment nursery for a more in depth assessment of where she is.

In the meantime nursery still don't seem to think there are any areas for concern particularly, and she has just moved into the 2-3 year olds room. I still keep checking her against the early years outcomes document, as age wise she has moved up a bracket in some things.

I think it is great that they are checking her out further, but I am getting frustrated that the waiting for this assessment alone is taking many months. I really think she would benefit from SALT. Her speech and understanding really isn't on par with her peers in my opinion and I don't see the point is waiting for the other assessment when the first one indicated she was 7 months behind.

I have a follow up with the hospital paed this Friday, who Refered us to the comm paed. I'm hoping she will agree with me and help to push for SALT.

This is all so exhausting. How do you lovely ladies find the energy for this? Especially those of you have more than one child - I'm in awe! Xx


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## aliss

REBRR
You get used to a new normal, but it's okay to cry in a pillow when you need to. Supportive friends mean the world to me. I have friends with "normal" kids but who are so understanding and kind - even if they don't really understand, they are good to have around. 

My boy is improving so much, he has 1:1 behavioural therapist and has been in an inclusive preschool full-time for 2 months now. I have so much freedom with just one typical kid (his baby brother) to care for. Wow. It's amazing how easy life is with that break. He is making massive progress, turned 4 a few days ago and is now able to speak in mostly full sentences (still struggling with articles and pronouns). He is learning to respond to questions better and to let us know what he wants. We are moving across the country in a few weeks, and I hope that doesn't disrupt him too much. Still nowhere near potty training but I'm happy overall.


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## annanouska

:flower: pointless moan but I can't cope with the violence. I've so many bruises and now a huge cut down my cheek where he scratched me.

He has been so good with his one little friend he tolerates for a while now but today she was in the car ( little tykes) he gripped her arm dug his nails in pulled her hair and bit her :happydance:. I left in tears I feel awfully that's when he went for me when I picked him up.

I don't know where to even get advice or help. I see the hv again in a couple of weeks I can ask her and this out reach person next week who is coming :shrug: any tips? I know Thomas is violent any others or advice? I'm gonna have no friends at all now, they all don't bother with me as little guy has been so unpredictable and then he does this again today to the one he and I do have.

He's been fab with other children recently just keeps his distance, this was all over the car. I moved the car away and it got better but obv went for me again. I look like a battered wife. 

The salt and early years people, who came yday seemed quite dismissive about the asd ( raised by the paed) and that he has lots of positives with his communication which he does. They are all very recent that he points and interacts with u, but I've been here before then he looses it all again.

Feel generally fed up I think. Is like we are seeing all these people who say different things and u go in circles and nobody really " helps" tbh unjust get fragments of input x


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## nicki01

Sorry your having a tough time Anna. I don't have any answers really, Charlie gets violent, she punches me in the face and just generally attacks me, I have 2 false teeth that I had fitted as a teenager and in the last year she has knocked them out twice! 
I've asked for advice and help with her behaviour as she is so powerful at just 3.5 yrs and I can barely hold her/restrain her but all I get is suggestions like trying time out, reward charts etc. its all useless, she doesn't understand any of it and doesn't care that she hurts me and doesn't care about rewards etc! 
Its hard so hard! Wish I could help but your not on your own. Xx


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## sequeena

Massive hugs for everyone. How are we? How are our kids doing?

Thomas is up and down. Still suffering with major separation anxiety and his sensory issues seems to have gone into overdrive. He is also choking every day now. It's got to the point where I don't even panic it's happening that much :wacko:

We have picked a nursery for Thomas :thumbup: it's more of a flying start play group that takes private children. It's 2.5 hours every morning but Thomas will be going on a Wednesday and Friday. He will also have his support worker :happydance: I'm so pleased. It's lovely there but they can have up to 30 children at 1 time and their ratio for staff to children is 1:4. He should start in a few weeks.

Still waiting on his wheelchair, getting very excited now though. Still waiting on OT :growlmad: and the longer we wait the worse his meltdowns are becoming. He is chewing more and more on the inside of his cheek and now has 4 ulcers.


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## bumpin2012

:hugs: ladies. Im still here reading the thread. Don't have a lot of time to comment these days though! 

G is good, progress is continuing every day. We found out that we are not moving, (we were told we were being posted across country 8 months ago) so having to contact all our supports to get him back on their lists is getting annoying. 

Our condo is back on the market, hoping to be in a house by the end of summer/early fall. Not easy with a tornado of a toddler and a newborn. (who is already 6 weeks old!)


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## Plex

:hi: heya everyone - can i join too? 

My little boy is nearly 3yrs old - 2yrs 11 months and 7 days to be exact :haha: 

He had a review just after he turned 2 and the HV said that she was extremely concerned about his understanding, speech and language. I disagreed, and did for some time until this friday just gone. I feel awful about that. :cry: 

In the mean time he has attended reviews with the speech and language nurse and attended a block of chatter matters courses - both of which he enjoyed.

I got him in a nursery asap after the assessment and he's been very happy there, the staff said how good he was and his understanding, speech and language were advanced for his age (they were saying this in april this year) The nursery decided to move him into preschool in May (he should have moved in sept). Obviously with these comments I felt confident in my feelings that I shouldnt worry about him.

Anyway just over a week ago he had his 3yr assessment and the HV assessed him to be delayed in 5 areas, his cognitive skills being the worst - that of a 2yr old :( He co-operated fully and completed all the tasks, I was happy for him to be referred just in case. Hes going for vision check this thur, STILL waiting for speech and language specialists referral (since feb!) a couple of other im not sure with the names but i know ones for autism and the other is from the disability team. Im going to call HV and insist on a hearing check too - dont know why that one was left off? 

I speak with his nursery after EVERY session and all has been well until friday when they told me that they wanted to refer him to the disability team!! That was a shocker but the manager did discuss why and i agreed, apparently when asking other to play games he askes himself ie-wanna play ball Samuel? so the other kids dont understand him, he plays by himself alot because of this - it breaks my heart :cry:

At home hes fine, his understanding is good and he carries out complex tasks. 

Sorry im really rambling here - theres so much more to write but dont know how to put it :( 

Im so so glad ive found this page, ive been reading through your journeys and your all an inspiration! xx


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## RachA

Esther went to bed without her dummy tonight-I'm soooo pleased. I just hope that if doesn't get harder as this evening was so easy. She's slept a couple of times at my parents without it during the afternoon and then last Sunday night she slept there over night and my mum forgot about it and said she slept fine. So this evening I thought I'd give it a go. She did chatter in bed for about an hour and randomly called out for me. But she does chatter most nights-just not usually for as long as she did tonight. 

I'm going to be so pleased if this works tonight and for the next few nights :)


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## annanouska

:hugs:sorry if this sounds funny but I'm glad to know E still had a sleep dummy as M can't cope without it for sleep and the hv makes me feel terrible about it.

I'm pleased it went so well for her fi gets crossed it carries on x

Sleep deprive EEG today wooooo


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## RachA

That doesn't sound funny. I never imagined I'd have a 4 1/2 year old with a dummy but up until now I've found it impossible to get rid of it. I came to conclusion with my son that it's better to get rid of it once they can understand properly what's going on. For D that was at just shy of 2 1/2 years. 
E does understand now so it's the right time for us. 
I'm just hoping she'll be as good tonight. She did wake up at 6sm this morning and I wondered what on earth we were going to do. But then we left her, she called out to me a couple of times (if she was really that bothered about getting up she'd could of as her door was open slightly) and then went back to sleep for another hour and half!!

Don't let thd HV make you feel bad. If you time it right you should be able to get rid if it with minimal hassle.


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## moggymay

Well done E!!! Hope you managed last night too :)


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## annanouska

:hugs:I always said I'd never have a toddler with a dummy :haha: he doesn't u der stand either. He just looks for it or finds something else eg. Toy to use in place. He doesn't really have it of a day time just naps and bed. Only think is he can get the whole thing in his mouth. 

EEG was ok they saw abnormalities last time but think it may have been stress. Just of t to wait til review in July for results x


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## RachA

annanouska said:


> :hugs:I always said I'd never have a toddler with a dummy :haha: he doesn't u der stand either. He just looks for it or finds something else eg. Toy to use in place. He doesn't really have it of a day time just naps and bed. Only think is he can get the whole thing in his mouth.
> 
> EEG was ok they saw abnormalities last time but think it may have been stress. Just of t to wait til review in July for results x

I always said I wanted it gone by 3 years at the latest. Esther's 4 1/2 but as she's actually 18 months behind that makes her developmentally a little over 3 years so about the right time :) 

Hope the results show what you want.


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## essie0828

Hi ladies :hi:

Been mega busy here lately, kiddo has a sinus infection and fluid on her ears. Makes for one cranky, non sleeping toddler. She has puzzled us for 2 weeks now with her behavior and stall in progress. Hopefully knocking out this infection will fix things. 

For the ladies that have kiddos that bite and have sensory issues. They could be seeking oral sensory input and may benefit from chewing or biting therapy chews. They've helped us tons. DD will still bite sometimes but its been dampened some. 

Been gathering up a therapy kit for my lil cousin. He has scored low in three areas of his early intervention tests and will begin OT and speech soon. Found the coolest thing for kiddos that are sensitive to water, Water Beads. I can't stop playing in them. They are very enticing and feel wet but look like little marbles. Not for eating but non toxic and supervised of course but fun fun.


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## essie0828

Girls I have not kept up with the reading on this thread lately but I've skimmed enough to know there are new ladies :hi: Welcome :hi: 

We've started quite a few new OT techniques with kiddo and I am waiting to see how they do. Got a tactile sensory brush and have started tactile sensory input on DD 3xday. The brush is super soft and I do a specific pattern on her body avoiding face, neck, abdomen, groin and feet. So far she's loving it, it calms her down if she's close to nap time or bedtime. Sometimes she throws it....and we back off a bit, skip a time or two and she loves it again. I have no clue if this will lessen her waking in the night but her OT seems to think so. We shall see. He thinks she's being woke up by the feeling of her clothes and bedding because she likes to sleep without anything covering her. I can barely keep her in a shirt and if its not her crib she don't sleep. Overnight trips are a sleepless mess. She will sleep in the carseat tho. Speaking of sleep, its 430am here and I'm wiped out. DD has been up half the night and is finally sleeping soundly, :hi: bye ladies. I'll try to catch up properly later.


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## annanouska

:growlmad: I'm angry!!

Went to library today and the lady looked very misserable when I went up to her to ask a question. Enquired about u5 story time and if he could go. I explained his needs and said he will be better to wonder at edge of circle as wont join in/ sit still. He's not noisy just can't sit in a circle. She felt he would be too disruptive for story time and " can't u take him to a disabled group"? Wtf?! If he was being disruptive I'd remove him anyway. He's still on his journey so not officially "disabled" anyway. Just really seriously annoyed me x

Essie. I think that brush sou ds relating x


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## RachA

I would of been annoyed too Anna. 

I took Esther to see a chiropractor today. She's the wife of someone OH works with and she wasn't interested in seeing Esther to see if any of her development issues could be sorted out with a few sessions. She not charging us as she's using it as an opportunity to develop her skills as well as see if it has any impact. I'm guessing any improvement will be in her motor skills. 
She has established that Esther doesn't have the full range of movements that she should so she's going to give us some exercises to do with her :)


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## RachA

So my wonderful (!) mil really knows how to twist the knife! She's just informed me that there's a boy starting at Esther's school in sept with her who also has speech problems but (and to quote) 'he's just got speech problems and is very intelligent'. So yeah thanks for making me feel like my child is stupid as well as delayed :cry:


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## Plex

:hugs: Rach - well ur mil certainly isnt thinking before she speaks :( Something like that would make me feel so churned up inside with anger, upset and stress, to the point I wouldnt know what to say - did you say anything back to her? :hugs: xx


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## RachA

Thanks. No I didn't say anything. I was just too amazed that she'd actually said it. The trouble is she thinks being academic is the most important thing. She's asked me so many times if I think my 6 year old is grammar school material and I'm like 'haven't got a clue and don't actually care as long as he enjoys himself and works to the best of his ability' 
So neither of my children fit into the right box for her and Esther even less so. As she doesn't have an official diagnosis other that delayed she can't say things like 'well if course my grand-daughter has special needs' to her that is better than saying 'she's not talking yet and ages nearly 5'

Sorry am going off on one tonight-had a rough couple of days.


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## Boo44

RachA said:


> So my wonderful (!) mil really knows how to twist the knife! She's just informed me that there's a boy starting at Esther's school in sept with her who also has speech problems but (and to quote) 'he's just got speech problems and is very intelligent'. So yeah thanks for making me feel like my child is stupid as well as delayed :cry:

Ah :( do you think maybe she was in some way trying to be reassuring like, oh there's a little boy he's intelligent but also has speech problems like E? Not sure why I'm trying to make what she said sound better, but I know that sometimes they open their mouths without thinking xxx


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## RachA

Boo44 said:


> RachA said:
> 
> 
> So my wonderful (!) mil really knows how to twist the knife! She's just informed me that there's a boy starting at Esther's school in sept with her who also has speech problems but (and to quote) 'he's just got speech problems and is very intelligent'. So yeah thanks for making me feel like my child is stupid as well as delayed :cry:
> 
> Ah :( do you think maybe she was in some way trying to be reassuring like, oh there's a little boy he's intelligent but also has speech problems like E? Not sure why I'm trying to make what she said sound better, but I know that sometimes they open their mouths without thinking xxxClick to expand...

Thanks. I did think that myself but it was then followed by other stuff along the lines of 'he'll be ok because he is intelligent so when he starts speaking it won't be an issue' It definitely wasn't meant to mean E will be ok cos this lad is similar.


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## annanouska

That's just weird and tbh something my mil would say! This sounds terrible but I'd imagine it's quite hard to assess intelligence 1. So young and 2. With speech issues. A child may be very clever but can express it in sign or pictures etc . What does it matter anyway she's still your little girl and it's sad she can't see that. X sorry not got anything helpful to say x


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## RachA

That was helpful :) 

It'd be nice if she accepted both of the children for who they are. More than likely they'll be her only grandchildren. 

Like you say-I don't know how you can assess intelligence that early on. I know some children shine but tbh I'd rather mine were happy rather than being forced to do extra work just to prove they can do stuff. 

She's so frustrating!!!!


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## essie0828

Wow! What a witch. :hugs: Rach your babies are just that, yours, and they are perfect. Who cares if a 5yo can't solve the mysteries of life. Esther will find her way to communicate with help. Your MIL needs to be grateful for what she has in the beautiful grandchildren you provided her.


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## sequeena

Hi everyone I'm sorry I'm not around I'm quite busy right now. Life has ramped up by 100%. Thomas is starting another nursery tomorrow morning with a support worker.

:hugs for everyone xx


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## essie0828

sequeena said:


> Hi everyone I'm sorry I'm not around I'm quite busy right now. Life has ramped up by 100%. Thomas is starting another nursery tomorrow morning with a support worker.
> 
> :hugs for everyone xx

Awesome news! I hope he has a great time tomorrow. :happydance:


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## essie0828

Awesome news! Hope he has a great time tomorrow. :happydance:


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## emyandpotato

sequeena said:


> Hi everyone I'm sorry I'm not around I'm quite busy right now. Life has ramped up by 100%. Thomas is starting another nursery tomorrow morning with a support worker.
> 
> :hugs for everyone xx

I hope he enjoys it! 

BTW you look way different to how I imagined! I mean that in a way less creepy way than it sounds :haha:


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## sequeena

Uh scratch that T has gone downhill again (diarrhea, with added coughing) and I'm starting to feel all stuffy :(

:haha: what did you think I'd look like?


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## emyandpotato

To be honest like a tall Thomas with long hair :blush: :haha: But I kind of imagine everyone to be big versions of their kids for some weird reason!


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## sequeena

LMAO! Do you think we look alike or different? Everyone says he's more like me now but the blonde is all his dad (though I was blonde as a child).


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## emyandpotato

Actually I think you have quite similar features. You can definitely tell you're related. You have the same eyes and nose I think!


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## bananabump

Hi everyone.. Just thought I'd let you all know that I've set up a speech delay/disorder group on Facebook. I've added some of you already but if anyone else wants to join then just send me a message with your fb name and profile pic so I can add you xx


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## emyandpotato

bananabump said:


> Hi everyone.. Just thought I'd let you all know that I've set up a speech delay/disorder group on Facebook. I've added some of you already but if anyone else wants to join then just send me a message with your fb name and profile pic so I can add you xx

Oh me please! My FB is: https://www.facebook.com/amyk.hampshire


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## annanouska

:flower: you do look alike he looks cheeky in that pic.

Marcus is doing this weird thing where he sort of has his mouth open and tongue out a bit the rubs hand up and down it, can't explain top well. Hs been doin it a while tbh.

He randomly says go and look ATM...funny neither were words he had before the regression :haha:

Hope t is feeling better x


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## sequeena

Thomas does exactly the same as Marcus! X


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## essie0828

DD does that as well but with the back of her hand!


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## sequeena

Must just be a sensory thing


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## annanouska

:rofl: that's ok a least I'm not alone. It's so bizarre with him, one minute he can seem so " standard" then runs about in circles strumming away on his tongue like some guitar.

Our hv has suggested a quiet coffee morning she knows for additional needs mummies and their lo's,il prob go so e point but I feel how rach describes in that he's currently not diagnosed with anything. I sort of feel like a fraud :dohh: i currently in joking refer to him as having Sheldon cooper ( Big Bang theory ) syndrome..,he's just a regular person just really rather quirky! X


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## RachA

annanouska said:


> :rofl: that's ok a least I'm not alone. It's so bizarre with him, one minute he can seem so " standard" then runs about in circles strumming away on his tongue like some guitar.
> 
> Our hv has suggested a quiet coffee morning she knows for additional needs mummies and their lo's,il prob go so e point but I feel how rach describes in that he's currently not diagnosed with anything. I sort of feel like a fraud :dohh: i currently in joking refer to him as having Sheldon cooper ( Big Bang theory ) syndrome..,he's just a regular person just really rather quirky! X

Go along and see what it's like. Although i'm a good one to talk because i probably wouldn't lol.



I'm currently have a bit of a 'i don't want to do this' moment. Esther has her stay and play session at school next Wednesday afternoon. I want to go and meet her teachers but other than that i really don't want to go. I don't want to have to keep explaining to the other parents that yes my child is the one that doesn't talk and that will be taking up half of the TA'a time (if she doesn't get a statement). Having to explain that when she gets invited to a party or to play at someone's house (assuming she does) that she won't actually be able to talk to the child/parent properly to communicate anything. Agh!!!!!!!


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## essie0828

Sequeena I think it's that exactly. DDs OT thinks so to, he's seen her do it several times now. If it's kinda bothersome you can try a redirect with a chew necklace or something else that gives calming sensory input and is less gross. I cringe when we've been in a medical center somewhere and after DD has handled something thats probably infested with germs, she rubs her tongue. Yuck! Probably why we're having issues with her ears and sinus infection now. The grossness she puts in her mouth and the gobs of pollen everywhere. 

Hehe Rach, I'm like you. The rehab hospital DD goes to was starting a support group and I won't go either. There are only 3 cp kiddo's that i know of there. It would probably do me good but I don't really do good in groups :haha:


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## annanouska

:flower: I went to the group, it was great tbh. The children had downs and were absolutely adoreable, my lo tolerated it well for him too. It was useful as the parents had lots of numbers and things for stuff to help.

Had his play therapy today, she's referring to OT. Was good as she saw 2 absences , him going fom happy to hysterical, him attacking me etc. all of which u don't always see :thumbup:

Rach, I hope the school visit goes ok. I hope Esther does get a statement to give her the right support :hugs: I know its different as m is only two but he was the only one at the party the other week who didn't talk or interact. He did ok and had fun just in a different way :dohh: xxx


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## essie0828

Hi ladies. 

Im having stroller drama:dohh: I'm needing a new stroller for DD and had bought the Joovy Zoom 360 because it says it fits a child up to 5yo or 75lbs. DD is 28months old and is 28lbs and is too tall! Her head is above the seatback. So i mentioned it to her PT and she said the early intervention programs have loaner special needs strollers and she would measure kiddo then go see what theyhave. Well what they have is very medical looking. It has leg positioners and has way more positioning aids than DD needs. And its huge. Anyone have any ideas on good jogging type strollers that will fit a tall child. Shes almost 39in tall.


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## moggymay

My DS2 is a bit taller than that and he sits comfortably in our B-agile still (very rare for him to want the buggy but ample space if he does)

This is a link to the US Britax site and the buggy we have (ours is black). It says coming soon so not sure when that means tho as the 3 wheel version doesn't look as big???

https://www.britaxusa.com/strollers/b-agile-4


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## moggymay

their BOB strollers are the specific jogging ones, my friend Lydia has one for her daughters and goes running with them in a double BOB - her girls are nearly 4 and 21 months


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## emyandpotato

We have the Mamas and Papas Sola and Rory's head isn't near the top yet. Not a brilliant pram otherwise though. Also those three wheel jogging ones are quite big.


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## essie0828

Moggy ty for the link! I really like the look of that stroller :) We looked at a bunch of reviews of the BOB series of strollers and after some digging found out the seat back height on those are shorter than the Joovy. Huge bummer. I need to look into their other styles. I mainly looked at the 3 wheeled ones. I've yet to find a website that posts seat back heights for their products! It's usually hid in the reviews. I think I need to go to some shops and try some displayed models out. 

Emy how tall is Rory? If he's taller than DD your buggy may work for us. 

Ladies thanks for the info. We really need something that fits in a small car but is long enough for DD to use for a while until her walking gets better. Dh and I are both 6ft tall so handle height is also an issue for us.


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## emyandpotato

He's around 90cm but not certain exactly? I think our GP said he was just under 90 at his last check.


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## nicki01

I'm to having a buggy problem! I spend £700 on a brand new double 11 months ago! Only Charlie has outgrown the weight limit!! I've now got to sell it for half the price and buy another double only problem it needs to be big enough for her as she is tall, have a high weight limit as the current one is 15kg max but needs to have a low handle as I'm only 5ft and I need to be able to lift it up kerbs with Charlie in the main seat as she won't sit in the back, also needs to be a double tandem not a side by side!
I've haven't actually found anything that suits all my needs lol! 
Its such a nightmare. I'm at a total loss.


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## moggymay

essie0828 said:


> Moggy ty for the link! I really like the look of that stroller :) We looked at a bunch of reviews of the BOB series of strollers and after some digging found out the seat back height on those are shorter than the Joovy. Huge bummer. I need to look into their other styles. I mainly looked at the 3 wheeled ones. I've yet to find a website that posts seat back heights for their products! It's usually hid in the reviews. I think I need to go to some shops and try some displayed models out.
> 
> Emy how tall is Rory? If he's taller than DD your buggy may work for us.
> 
> Ladies thanks for the info. We really need something that fits in a small car but is long enough for DD to use for a while until her walking gets better. Dh and I are both 6ft tall so handle height is also an issue for us.

DH is over 6ft and he can comfortably push the agile, it also fits in the boot of a micra, the rear wheels come off really easily too, last holiday we had it stored in the rearseat footwell under DS2's feet :)

I have loved ours, would recommend purchasing the optional bumper bar as we tend to use the lap portion of the harness and not the shoulder ones and he used to sit in and lean on the bar to watch what was going on around him.

What measurement are you looking for as happy to measure our buggies...


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## essie0828

Awesome! Yes please measure the seat back. From where their lil bottoms sit up until the seat ends. DD has a long torso so she's very tall when sitting up and most strollers with a shorter seat and canopy won't work for us. That's awesome news that your DH can push it and be comfy. Most strollers, especially umbrella style, are back breakers for us. Can I get that at a costco? Lol. That's the only store here that I have heard some of you UK ladies reference. There is a new one about 20mins drive from us and it's on the way to DD therapy, be a good excuse to check it out ;)


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## essie0828

Emy, DD is a bit bigger than your little guy. She's about 99cm if I did the conversion right. She's so tall and thin that finding anything to fit her is a nightmare.


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## essie0828

nicki01 said:


> I'm to having a buggy problem! I spend £700 on a brand new double 11 months ago! Only Charlie has outgrown the weight limit!! I've now got to sell it for half the price and buy another double only problem it needs to be big enough for her as she is tall, have a high weight limit as the current one is 15kg max but needs to have a low handle as I'm only 5ft and I need to be able to lift it up kerbs with Charlie in the main seat as she won't sit in the back, also needs to be a double tandem not a side by side!
> I've haven't actually found anything that suits all my needs lol!
> Its such a nightmare. I'm at a total loss.

What about umbrella style strollers? I can't remember seeing a tandem double but this style usually fits DD well but is so low to the ground that Dh and I practically have to push it bent over. I've seen some that are pretty nice, some really nice side by sides but I am clueless on the tandem. 

Im like you, I have yet to find a stroller that meets all our needs. I have 4 sitting in the spare room and one awaiting shipment back to the seller. Btw I had to take a burn on that. Buyer to pay return shipping :dohh: I hate internet shopping.


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## RachA

Essie-I've been using a Bebe Confort Loola and Loola Up for Esther. She's too tall for it now to lay back comfortably. Have just checked when she would of measured 39in and it was back when she was 3 1/2 or 4 and I know she could lay down in it then and she was fine. 


Nicki-not really much help for you as you don't want a side by side but I had the same problem-Daniel was tall and over the 15kg weight limit and I couldn't find a tandum one so ended up with a side by side which I did actually prefer. 
One thing to consider though is that the 15kg weight limit is how much they test the buggy to here in the UK. I've heard some of the mums on here saying that in the US the exact same buggy is tested to a higher limit that 15kg.


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## moggymay

B Agile seat back is about 21 inches (it is a little more but then the hood becomes a factor)

Rach our other buggy is a loola :) Defo agree about it fitting a taller child, ours is now almost 7 years old and still looks ok, new pair of wheels and new hood and it would pass for a year old! (Hood is faded from sun and wheels worn through years of walking!)

How go the school socialising sessions for you guys? Can't believe we have just 12 more days of pre school left :shock:


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## RachA

moggymay said:


> B Agile seat back is about 21 inches (it is a little more but then the hood becomes a factor)
> 
> Rach our other buggy is a loola :) Defo agree about it fitting a taller child, ours is now almost 7 years old and still looks ok, new pair of wheels and new hood and it would pass for a year old! (Hood is faded from sun and wheels worn through years of walking!)
> 
> How go the school socialising sessions for you guys? Can't believe we have just 12 more days of pre school left :shock:

I totally knackered my first Loola - the wheels got shredded lol. So we then got the Loola Up. Even though E doesn't use it that much now I'm glad we've got it. 

We've got E's stay n play session tomorrow from 1.15-2.15. I don't want to go!!!! I'm fine with the fact she's going to be starting school even though a lot of things are still up in the air. I'm just dreading tomorrow because all the other parents are going to be there. OH is in Copenhagen for the day so I haven't even got his support (although to be fair to him he did say he'd stay if i wanted him to)


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## annanouska

:hugs: rach it's going to be fine. Your children are old enough for you to know some parents are just idiots in general :rofl: you might meet some nice ones but more importantly Esther can get to meet her peers :flower:

It is hard being the parent of "that child" the one just a little different and it's hard to not feel all eyes are on you like you are an alien family :hugs: Im sure there will be other children there who have their own quirks and challenges. I know that won't help you but im sure other parents are worried too. I'm often the one with the biter, hair puller,grabbing crazy one....being non verbal ATM just adds to it :haha:

Itvwont belong before it's the Christmas play and she's taking part :flower:


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## sequeena

It's hard finding pushchairs for taller children T is around 98cm.

Sorry I've not been round I've been fundraising the last few days and raised over £250.

Thomas starts nursery.tomorrow I'm nervous :( rach good luck xx


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## annanouska

:flower: how did Thomas do at nursery and Esther at school ladies? X


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## sequeena

He did pretty well thanks. Leaving was hard he kept blocking my way. He did have fun though.


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## nicki01

Hope everyone is ok? I've got 2 grumpy hot girlies today! Charlie's new word is no way! Everything I ask her "get dressed no way, have lunch no way, bedtime no way" its driving me mad!! 
I've sold my oyster pram and bought a phil and teds dot.
The max weight limit is 20kg and Charlie is 17.7 so hoping it will last us till the end of the year and then I've no idea what to do!
Currently waiting for it to be delivered


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## sequeena

Thomas is also saying a lot of no way he is cracking me up!!

Apply for a maclaren through wheelchair services x


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## bananabump

Hi everyone, I'm sure I've seen someone posting on this thread before about their son/daughter having seizures? I'm just looking for some guidance really. My son had an EEG today as he's had 4 in the last month so they think he could be epileptic. I'm trying to find other parents of epileptic children or children who have seizures with an unknown cause to share our journeys xx


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## annanouska

:hugs: its me and Marcus!

I think one of the ladies hubby has night seizures too. 

I always mean to ask does Leo have proper jerky type fits? My uncle had that type of epilepsy, my sister had juvenile epilepsy but she's ok now at 21. She's dyspraxic and dyslexic but can function brill and just finished her degree.interestingly tho it did affect her speech which I know you a struggling with ( again its fine now she never shuts up ). Her seizures are a lot of what I see in Marcus, he just sort of stops and completely zones off, you can't bring him around you have to ride it out. 

I've noticed he seems to get more around developmental milestones and also when tired.

I know his first EEG was abnormal but the second I don't know yet, as you know they sit in and watch it and do the computer but won't tell you anything even tho they can prob see!!!

Sequeena, I wish I'd got a maclaren buggy, if he's asleep in his his head falls a bit off back :dohh: I can't afford another now and when he's away he pulls forward and sits upright so its ok, plus he rarely sleeps anyway lol x


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## nicki01

That's my next step, we are seeing the paediatrician at the end of the month so I'm going to ask to be referred to the wheelchair company, I won't be able to use it on my own but when out with my partner we can have a pushchair each!

Breakfast seems to be a battle just lately! Think its a power trip as she knows I want her to eat breakfast before we do anything whereas other meals I'm more laid back and don't mind if it takes her 2 hours to pick at it. 
Every time she excels with something I find another battle somewhere else! She has come out with a little attitude now she has more words! She is like a stroppy teenager its so funny!


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## sequeena

Popping in with hugs for everyone. How are we?

Thomas is doing well at his new nursery which is a relief. His other nursery breaks up for summer on Monday. 

He is very sensitive right now and seems to be afraid of everything. I hope he feels better soon I don't really know how to help him :(

I am just so keen to get him to see the OT his sensory issues are so out of control and his behaviour is just getting worse. He's actually on 2 waiting lists for a pediatric OT. One at the children's centre and one at a different hospital. I'm not taking him off either having him on both means he shouldn't be waiting too much longer!


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## sequeena

Also T had another frigging growth spurt and has hit the 100cm mark :wacko:


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## annanouska

M seems tiny he's only 88 cm but was 2 today. 

He had a nice day but it was overwhelming for him so we had sine if his weird quirks pop out. 

We are on the ot list I think it's long. I've got him some chewlery from chewi gem he's not grasped it yet!

We got a workbench for his bday he loves playing with the doors. He us door obsessed!!

He babbled to a child today, the boy took his toy and m was ranting at him was hillarious. He never interacts so that was a start.


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## sequeena

Ah happy birthday to M!! :hugs:

Bless him!


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## RachA

Went into Esther's school today for a TAC meeting and handover from preschool to school. All went well - the school are employing for another teaching assistant to assist with reception year - they are doing this off their own back and out of their budget so that even if Esther doesn't get a statement she will have have support - yay to that :) And they are also sending one of the TA's on a speech course to assist with children with speech problems - yay to that too :)
The big downer (although thankfully the lady who's been observing E in preschool etc has given good advice and is prepared to fight the school over this) is that we have been told that they have no nappy changing facilities in the school and therefore if E's nappy needs changing then either myself or OH will be called in to do it!!! There is no way this is feasible - OH works a 30min cycle away and cycles to work most days. Although i don't work at the moment in a looking into what in can do in september plus also i do some voluntary work in another town which is a 30min drive away. I would have to stop that and not find work for the duration of E still being in nappies!! If we'd known this was going to be an issue then we would of seriously considered sending her to a specialist unit that was able to deal with nappies. It's not for the want of trying either - she just doesn't get it yet. I have a feeling that they can't exclude on the basis of still wearing nappies so they are going to have to deal with it. I am not at all happy about the fact that potentially 3 different members of staff could have to change her nappy but there is only so much that can be done - we are hoping that over the next 8 weeks she might just get it but tbh i'm not holding my breath as she doesn't tell me when she's wet or dirtied her nappy. She is currently wearing just pants - has been since 3.30 and in that times she's done a poo which she hasn't told me about - i just noticed her leg was dirty - and she hasn't wee'd at all. There is a good chance she won't wee now until i put the nappy back on her.

Anyway rant over. Thankfully everything else at the meeting was positive otherwise i think we'd of been seriously considering trying to move her elsewhere.


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## essie0828

Hi ladies :hi:

Sequeena nice work on the fundraising :thumbup: You guys are sweeties for doing it:hugs: Your avatar pic is cute, you both look cheeky :haha: How's nursery going?? Hope the little cutie keeps on liking it. I hope OT comes through for you guys soon. You will love it! 

Rach I hope E picks up the potty training soon. DD is the same, she can't tell me if she's wet. Sometimes she will indicate that she has had a poo but it's always after. I really dread addressing the school issue:nope: 

Happy birthday to M! :happydance: 

DD has shown quite a bit of progress lately, her understanding has gotten loads better. She's following more directions and showing promise with using an Ipad communication device. She got 8 out of 10 verbs correct yesterday in speech and we hadn't even worked on those yet. Not in pecs anyway. We're still doing all done, i want, and more with those. She will use a binder with pictures of different gym apparatuses and tell us where she wants to go play. She will pull the I want picture, then the ball pit picture and hand them to the therapist. Then we go play until she signs or uses pecs to say all done. She can do that with several different objects now. At home she mostly points and signs. Or brings me things and very deliberately places them in my hand. If it's her blanket she wants cuddles and to be rocked to sleep. If its a closed container she wants it open or if its something with a switch she cant work she will use my pointer finger to try and press it. Said uh oh for the first time:happydance: Other people are starting to understand her "language". All brags from all 5 of her therapists as well. Im.very proud of her, she is so tough and works hard. 

:hugs: to everybody


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## annanouska

:thumbup: that's great news essie sounds like she is doing brilliantly right now :hugs: 

Rach, I know its no help but if she doesn't get it she doesn't get it u can not do anything about that :flower: could the TA not be the nappy change person so its consistent? It would be very unsettling for e if mummy and daddy kept turning up for nappy changes even if it was possible :dohh: its quite a ridiculous suggestion tbh as you would have to basically be housebound, you couldn't just run up to school to change a nappy mid the groceries :shrug: 

Hopefully something will be put into place before then, it would be such a shame to have gotten so far then stall :nope: x


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## nicki01

Good news Essie, she is coming along fab!

Rach I'm so sorry your having tough times with the school, I'm also worrying about this! Charlie still has a year till school but right now I can't see her out of nappies!
She gave me all the clues this week, told me need poo on big potty, so I took her up and she had already poo'd, put her on there anyway and then we done pants for 3 days after! It just resulted in me having shed loads of washing and scrubbing the carpet all day, she even refused a nappy for bed but wet in there too!
She will wee all over herself and not even tell me she is wet untill I say Charlie you have weed and then she says oh I need the potty!
She knows how to wee on the potty as if I ask her too once, but after that she just says no and refuses to go on! 
Its hard but I just don't think she gets it!
We have been awarded DLA for care but refused mobility, I reapplied last week! Fingers crossed!
Those of you who get mobility, do you have a blue badge? 
I really really need this, Charlie has kicked our car door into so many cars next to us, I can't park in usual spaces and more through fear of damaging someones car and parent parking is hard to come by! 
She freaks out so bad about getting in the car and will kick and bash anything and anyone on the way in, hence the door hitting others! I just had to drive round tesco for 30 minutes waiting for a parent space, its ridiculous, yet there was 8 disabled ones free the whole time but I'm not allowed to use them! :-(

Sorry for the rant, I'm hot and bothered!!


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## moggymay

Rach could you use pull ups? When DS1 was in reception they couldn't deal with nappies but most days there was one child or another requiring a change of clothes due to a toileting accident. Could she change a wet pullup herself under supervision? I hope you find a solution :hugs: When will you hear re statement?


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## annanouska

:flower: hi everyone. 

Hope I are getting something sorted Rach :hugs:

We saw the consultant today, all genetic bloods were ok. His EEG results are both abnormal but not been properly reviewed by neuro consultant so still waiting of them :dohh: the paediatrician had a look and just said they are abnormal but she doesn't specialise so not entirely sure. They feel he is leaning towards autism with his behaviours and such but can't diagnose yet at 2 so still waiting and seeing. He will be going for an ADOS ( some autism play session thing) to get mor assessment done then a multi discipline team review at somepoint so right now, just keep on trucking! X


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## sequeena

:hugs: sorry I've only just seen this. I'm so annoyed for you and M. My friend's son has just been diagnosed with autism at (as was my nephew) so it is possible! :(


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## RachA

Thanks everyone. 

Sorry for the delay in responding but it's been manic with the end if term plus other stuff happening too. 

We've been trying E with the potty since last Wednesday. She hasn't done anything in the potty yet but she will sometimes tell me she needs to do a wee. This is usually after she's done it or else before and I'll sit her on the potty but she won't do anything!!! 
In response to your comments/questions: she will more than likely have a TA assigned to her but the TA's are part time-one works mornings the other afternoons-so there will definitely be more than one person changing her. 
She can't pull up/down pull-ups but wee isn't really the problem-she wouldn't wee all that much during the day so it's unlikely she'd need a nappy changing due to weeing. 


In other news: she's finished at pre-school now :( Can't believe that she has. It was very sad last Wed in her last day. Now we've got to get her sorted for school. Got some of her uniform-just have to wait to we get back from our family holiday at the beginning if sept to get the last few bits and pieces.


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## sequeena

Wow big girl school. Where does the time go :(

Thomas will be 3 next Thursday. On thee 4th he has his first OT appointment :dance: it only took 9 months to get the appointment! 

Thomas is falling a lot recently his little legs are like jelly.


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## bumpin2012

glad you finally got your appointment sequeena :)


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## sequeena

Thanks bumpin how's things?

Portage just left Thomas was one wriggly distracted boy today.


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## RachA

Glad you've got your appointment though Sequeena :)

They are all growing up far too quickly!! School holidays have barely started and MIL is already asking me if i'm going to find a job at the end of the summer once E is at school!!! Ummm - give me chance to enjoy the summer please and settle E in school and then i'll decide if it's the best thing for my family!!


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## moggymay

We had in laws a week or so ago and they were asking will I be starting work during school hours....um given they do gradual entry and we are still unsure how he will cope, No! I am not. DH and I have kind of agreed to wait a term and see how we feel, there is luckily no need for me to go back financially so we will see how Jack settles and go from there. We are level with chronological age speechwise now so no discharge from SLT but no sessions either, we are at watch and wait which I think is right as he is doing it we just need to ensure the progress keeps coming.

How are your little ones coping with the heat and humidity?


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## moggymay

Sequeena how does T enjoy water/swimming?


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## RachA

I don't know why people think that they minute they start at school then you need to get a job. We are in a similar position where i don't need to work but it would just be easier if i did in order to be able to afford holidays and maybe a second car and meals out etc. E is still under SALT so i'd have to take time off work each week to take her-it wouldn't take long before i'd used up all my annual leave on appointments.

Glad Jack is doing ok though :)

My two are coping ok in the heat. I think it comes from the fact that both OH and myself cope with the heat well too. It also helps that generally we'll go to the beach so it's nicer there plus we go in the sea.


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## moggymay

I want to live close to the beach! Weston is about 40 minute drive away except in the summer when it is about 3 times that due to holiday traffic :( Fortunately we have a big paddling pool the boys can swim in circles in (just about).

I am in two minds about returning to work....part of me thinks it would be nice to have the extra cash but when I think about having to put them into holiday childcare if I can't get something just in term-time I start to go off the idea. I want to be able to be here with my boys whilst they are growing up....I see other children in DS1s class who are increasingly confident and independent as they spend holidays in holiday clubs etc and do after school clubs but DS1 is a happy independent and confident little boy but in a different way. Part of me feels if we are lucky enough to have the choice I should embrace being able to be with my boys now as there will be time when they are older they just don't want to do stuff with me as I will become embarrassing!

What did you do before being a Mummy Rach?


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## RachA

The beach a definitely a perk of where I live-we cycle and it takes about 15min each way. We were there all day today from 11am until a little after 7pm-they didn't get bored at all and I even got to gave a little nap which I'd never get at home!!!

I've always felt that until they don't really need me around I want to be available to them and that to me means working term time only. My mum went back to work when I was about 12 and I hated it when I got back from school and she wasn't there. 
I don't see the need for children to go to holiday clubs etc to have confidence-some of it is their character and some is how they are brought up. 

I used to work for the benefits agency. Hated it for the last 2 years I was there so I was really pleased to get out. My general working background is admin work but I don't want to do that now-I want to do something interesting lol.

What about you Moggy?


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## sequeena

I live a 5 minute drive from the beach it's lovely x


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## bumpin2012

sequeena, busy is an understatement these days. we sold our condo, bought a house with a big yard. we move September 4th. hubby is being deployed next week with the baby for a month, so I'm staying out about managing 2 kiddos solo for a month. we have very little support here right now, and I'm freaking out a bit. 
G is doing pretty good, considering the big change his sister has brought with her arrival. loves her to bits ( sometimes a bit too much!) but he's acting out a lot. the shrieking is what gets me... it's grating on my nerves. his last ASQ results put him 3 months behind ( up from the previous 6 months) and he's gaining more words
J is cuddle bum, and the lightest non sleeper I've ever experienced. she refuses to sleep during the day, fights until she's utterly exhausted. she needs a lot of walking and bouncing to fall asleep and if I dare put her down, she wakes within minutes. I'm REALLY hoping that gets better ASAP... she's a great night time sleeper though. she only wakes once around 5 am to eat, and has done so consistently since 8 weeks old :)


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## bumpin2012

my babies :) :cloud9:
 



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## bumpin2012

my babies :) :cloud9:


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## LalaR

Hi ladies, I don't know if I'm being over anxious and I don't know if this is the right forum to come to. 
My little boy is only 10 weeks old but we have just been referred because of possible developmental delay. I was really shocked as I hadn't thought there was anything wrong. The doctor assessed him twice ( both times during his sleepy time) and feels he is hypotonic with minimal head control and she is worried he can't see because he doesn't blink. He has some reflux and has been slow to gain weight although is growing better now although is petite. The doc thinks this is all related. The baby I see smiles and looks right at me. He kicks on his mat and when held upright does have some control of his head movements. I wonder if he has regressed over the past few weeks with his gross motor skills. 
I'm now imagining all sorts of things. Has anyone had similar concerns raised at this age and what happened from then? Sorry if these are inappropriate questions. X


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## annanouska

:hugs: nothing that young for me. I would record everything you witness in a diary and note any concerns. If there are issues atleast they r being picked up and u can get the right support ASAP :hugs:


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## nicki01

I agree with Anna, I've no experience that young but would definitely record things then you can see progression etc without questioning yourself to much.


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## essie0828

My DD was hypotonic at that age but even though I noticed and brought it to the attention of her pediatric doctor, they told me to wait and see. They anticipated she would get stronger on her own. She had reflux issues and her weight was in the 15th percentile. Her feedings were 2 to 3 oz around the clock still at 3months. Even though she was hypotonic, she wasn't the text book hypotonic, it seemed to come and go. Sometimes she could control her head and was a tummy time champ. Sometimes she would just seem wore out and wouldn't try. I thought she was just tired. Looking back, our doctors were trash. We should have been sent to early intervention well before DDs first birthday. If the docs have noticed hypotonia, definitely keep an eye on it. Track development with videos and show the docs how he does at home. Go ahead with early interventions and PT if referred for it. Does your kiddo have constipation issues? It kinda comes with the hypotonia sometimes. Try not to freak out but be on alert for milestones and keep close track with the developmental pediatrician.


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## essie0828

Bumpin I love the pics! Lil miss is beautiful, and the pic of G looking at her is priceless. :)


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## bumpin2012

thanks Essie! they adore each other right now. I'm trying to take as many pictures as I can. one day I may need proof that they actually do love each other... :haha:

lala: it's never a bad thing to have a professional paying attention. I never did convince our Dr that anything was wrong with G (27 months). I contacted early intervention, I got him seen by our provincial hearing and speech services, and found a way to get him in to a developmental pediatrician all without her help. now that I have a very normal developmental baby, I can see major differences between her and G, even at 12 weeks! 10 weeks is still young, and you may find that catchup happens, but I'm glad someone is keeping on eye on him. Perhaps a visit to a physiotherapist may be helpful?


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## sequeena

Looking back it was obvious that Thomas had (and still has) hypotonia but as a first time mum I really didn't know what to look for and it was really only at 17 months when his other issues became apparent that doctors took an interest. As said record everything even if you think it's irrelevant.


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## LalaR

essie0828 said:


> My DD was hypotonic at that age but even though I noticed and brought it to the attention of her pediatric doctor, they told me to wait and see. They anticipated she would get stronger on her own. She had reflux issues and her weight was in the 15th percentile. Her feedings were 2 to 3 oz around the clock still at 3months. Even though she was hypotonic, she wasn't the text book hypotonic, it seemed to come and go. Sometimes she could control her head and was a tummy time champ. Sometimes she would just seem wore out and wouldn't try. I thought she was just tired. Looking back, our doctors were trash. We should have been sent to early intervention well before DDs first birthday. If the docs have noticed hypotonia, definitely keep an eye on it. Track development with videos and show the docs how he does at home. Go ahead with early interventions and PT if referred for it. Does your kiddo have constipation issues? It kinda comes with the hypotonia sometimes. Try not to freak out but be on alert for milestones and keep close track with the developmental pediatrician.

Thanks for answering. That sounds just like Lewis. His weight is on the 9th centile but he is growing. He has the reflux but not constipation. I'm breastfeeding every 2h during the day but he goes 6h at night. Some of the time his tone seems normal and sometimes he just seems too sleepy. 
I'm in the uk so need to wait for a referral before I can access physio advice. I will get the video camera out and record what he can do when he is alert to try and help the specialists.

What has been the outcome with your little one if you don't mind me asking. Xx


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## DHime

Hi. Im new to this thread. My ds just turned 2 and is on level with an 18 month old. He doesn't talk yet and has a gtube. He is in the 0 percentile on weight. I never knew you could do that. 

He was also 3 months early and has had 4 surgeries and 8 times put under. We nearly lost hi in october dueto cdif.
on top, people seem to expect him to be well behaved but they just don't get that he is delayed and just what that means in regard to his behavior. I do discipline him. If he cries too much, he vomits into his lungs and risks pneumonia. it is very hard toexplain this. I have stoped taking him to most public places since people have zero on tollerance for toddlers. He can't be with other kids because of a compromised immune system.
just makes me want to scream


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## sequeena

Hi DHime. It's very hard trying to explain our children's issues to people who have not been tiuched by special needs. They just assume things :( I hope your LO is ok right now what an awful lot for both of you to deal with x is the vomiting into his lungs something doctors will be able to fix? It must be so hard walking the line of disciplinging and 'giving in' because yoy know he will be ill if you don't x you are welcome to chat to us whenever x my son has/had a delay of 15 months behind chronological age. He is due another ruth griffiths assessment so we don't know where he is developmentally right now but he definitely not where he should be.

I have just got back from his OT appointment. It was worth the 9 month wait. I wanted to cry with relief. The therapist is wonderful he said straight away he can see Thomas has lots of isdues especially hypermobility. In his words his limbs 'go everywhere' lol!! It also helps that the person who will do the therapy is his pre school worker. She knows him so well. It's a massive weight off my mind. Anything behavioural they said they will refer to cahms. He will soon start 5-6 weeks of therapy. I am so happy!


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## minties

That is good news about Thomas xoxo, he's one of my favourite "online people". I wish him all the very best. He's a lovely boy.


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## moggymay

That is fab news about T being able to have therapies with his key worker. Makes a big difference I believe as when they spend a lot of time with them they form a kind of emotional attachment that gives them and extra special interest in wanting to help them if that makes sense?

Jacks pre-school key worker taking on some of his speech therapy made a huge difference for us as it meant he got proper help at home and at school from us and her plus we all got the support and help from SLT. Well done Sequeena, glad you are getting some good support :hugs:


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## essie0828

That's great news sequeena! :hugs: T is so cute. The pics from his 3rd birthday are great. The older he gets the cuter he gets! Love it! 

LalaR my daughter was diagnosed with Cerebral Palsy at around 18 months of age. Even though your little guy is similar don't panic that he has CP. Hypotonia is caused by lots of different things, especially in the little guys. It wasn't clear to me that something was wrong until she was between 9 months and a yr old. By then she was behind in her gross motor skills enough to send up red flags. We always had feeding issues and her latch was too weak to breast feed. Ended up doing bottles despite all my efforts to breast feed her. She would feed every 2hrs sometimes going 4 at night. Rarely. She was just getting too tired trying to suck and swallow. It takes a lot of muscle coordination to do those things and we still have trouble with her getting tired while eating. With almost a yr of intense therapy shes walking, learning to communicate with alternative devices and eating well enough to sustain herself in the 30 to 50th percentile for weight. She's a very tall 39inches and 31 lbs at last weigh in. She is delayed in all areas except for her social emotional skills. Oi is she a charmer! She knows how to make all her therapists melt and give in to her. Not to mention me and her dad. She's done great work and is closing the gap on her delays but she will always have muscle control problems. We do 2 one hour sessions of physical therapy, 2 sessions of speech therapy and one session of occupational therapy a week and she has responded well. At her last appointment with the CP clinic team she was diagnosed with Hypotonic Cerebral Palsy. Originally our diagnosis from the first neurologist was diplegic cp mainly compromising her legs. That was at 18months. Her diagnosis evolved as we discovered during her development she was hypotonic (mild to moderate) all over. There are several various types of CP and various degrees of severity. It's not common. About 2 in 1000 kiddos have it. It can be related to a traumatic birth or brain injury at birth or during pregnancy. Some kiddos have strokes and then develop cp. It's usually diagnosed after a brain MRI but can also be diagnosed based on history and evaluation of motor skills. The give away for us was DDs feet. She never put her heels down when trying to stand. At first there were ballerina jokes and comments and it didn't hit home. Then I realized that something wasn't right. Your little guy is still too young to spot signs like that.


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## sequeena

Thank you everyone! How are we all?

Thomas had his first occupational therapy today I'm so happy!! He already knows his therapist which really helps she just 'knows' him! She helped him play with dry rice and calmed him down when he got panicky. She played sensory games with him showed me how to do deep touch therapy and more. She understood he needed frequent breaks. He can't stay still for more than a few minutes and he needs to run in circles. It was just fab. I have loads of stuff to read and we're doing oral stuff on Wednesday along with rebound therapy. I also ordered a chewy necklace I just need a t bar for him


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## essie0828

Hi DHime. I agree with sequeena. It's hard for "Normal" people to understand kiddos with delays. And I don't know where people get off thinking little kids should be able to sit quietly and control themselves emotionally. Omg people they are not adults. I know hearing a kid cry or whine is irritating but have a little patience for goodness sake. :) Ok rant over. I get the same problem dear. My DD is almost 2 and a half but is mostly on par with an 18 month old. You just gotta think what would an 18 month old do in this situation and tell everyone else to F off ;)


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## essie0828

sequeena said:


> Thank you everyone! How are we all?
> 
> Thomas had his first occupational therapy today I'm so happy!! He already knows his therapist which really helps she just 'knows' him! She helped him play with dry rice and calmed him down when he got panicky. She played sensory games with him showed me how to do deep touch therapy and more. She understood he needed frequent breaks. He can't stay still for more than a few minutes and he needs to run in circles. It was just fab. I have loads of stuff to read and we're doing oral stuff on Wednesday along with rebound therapy. I also ordered a chewy necklace I just need a t bar for him

Omg YAY! I knew u would love it! The chewy necklaces are wonderful for calming and strengthening the mouth. Dry rice, beans, water beads, play dough, shaving cream with hidden bits all that tactile stuff will be amazing. It's hard at first. Baby steps and all that but he's going to respond so well. I just know it.


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## essie0828

Does T like deep pressure?


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## sequeena

Yeah he loves it :) she had a.good grip on his hips earlier whilst half rolling him over a peanut shaped gym ball he freaking loved it and she did the 'brushing' with him too and did it to me I felt all tingly!


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## essie0828

Lol! I love DDs tactile brush. She gets it and brings it to me when she wants to be "tickled" now. She will hand it to me and say "kickle mama". :haha: I've seen some kiddos that like deep pressure use weighted blankets and vests. Also seen OTs use a deep pressure roller that's sort of like a big padded rolling pin that the kiddos squeeze under and they love it. One little guy goes strraight for it every time he gets agitated at the rehab hospital. He's learned to go there to calm himself :cloud9: I think you will see a big reduction in his tantrums as he learns to calm himself with the OT. So excited for you guys!


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## sequeena

Oh we call that the mangler lol!! I'm hoping T will use it his therapist calls him.a tentative explorer xx


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## essie0828

Lmao! That's an appropriate name. First sight of it and I was like, WTH is THAT! Looks like what you would wring out laundry with :haha: It will definitely take some getting used to. I know I wouldn't crawl into it without being sure I could get out. It's intimidating! DD won't get in it but she's not a fan of deep pressure. She's a tickle and vibration kinda gal. Her z-vibe is her go to choice.


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## RachA

Glad T's therapy went well today Sequeena


Essie-just wanted to say wow! Considering your DD has issues eating she's a good weight :) E was weighed and measured today at an appointment: ages nearly 5yrs and is 105cm which is a little over 41inches. But she only weighs 31.9pounds. In so used to how she is but when I see how much others weigh it makes me realise E us just so tiny!


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## essie0828

Rach she was weighed in her full set of afos and shoes :haha: About a pound of that was braces and shoes but shes definitely been improving with her eating. She was 28 lbs with braces and shoes about 6 weeks ago. We've been working hard with her OT and Speech therapist on feeding as she started loosing and only wanting to drink a bottle. I noticed she had the tiniest fat roll on her lower tummy and was so proud. Don't get me wrong I don't want her to be an unhealthy weight but for kiddos with CP it's hard to put on weight. Seeing a tiny chubby belly makes mama relax some. :). Wow E and DD are very close in size! Don't think E is too small though, my kiddo is really tall for her age. She's as tall as most 4yr olds.


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## annanouska

:flower: hi everyone it been about much as been poorly in hospital for a couple of weeks Im home now on the mend. It was hard as I'd never left Marcus and when I came home he wouldn't come near me :cry:hubby tried to bring him in to see me but he got too distressed. Things are back to normal now tho, he even gives me a kiss at times now :sleep:

We are going through one of his phases where he seems a lot better and like everyone else, they don't last tho:dohh: we have his autism assessment around jan apparently. There are also some abnormalities on his brain pattern but not heard back yet. He has sensory room this week and OT next week. 

He's been a lot better with other children recently. Still stands off and keeps a distance but more tolerable.

He's started talking a little, he says no to pretty much anything :haha: he will also copy up and down and points with it. He seems to be babbling a bit more too :thumbup: 

Hello to all the new people x


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## bumpin2012

We're still trucking along here. Ongoing SALT... nothing major. G loves his sister, and she's in love with him. She's a very different baby than G was, a bit of a diva...lol. definitely a girl! She seems to be on a 'normal' developmental course. She sits very sturdy in her bumbo chair, while G as the same age still flopped over, she can push herself up on her arms while on her belly, and G couldn't at this age. She's a chatterbox, constantly cooing and talking. G didn't babble until 15 months!

Hubby deployed last week, so we are all out of sorts adjusting to a new routine. Solo parenting is soooo not fun.

Glad to see everyone is doing well :)


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## RachA

essie0828 said:


> Rach she was weighed in her full set of afos and shoes :haha: About a pound of that was braces and shoes but shes definitely been improving with her eating. She was 28 lbs with braces and shoes about 6 weeks ago. We've been working hard with her OT and Speech therapist on feeding as she started loosing and only wanting to drink a bottle. I noticed she had the tiniest fat roll on her lower tummy and was so proud. Don't get me wrong I don't want her to be an unhealthy weight but for kiddos with CP it's hard to put on weight. Seeing a tiny chubby belly makes mama relax some. :). Wow E and DD are very close in size! Don't think E is too small though, my kiddo is really tall for her age. She's as tall as most 4yr olds.

Aw it's really great she is eating better and I get where you're coming from with the roll of day lol. 
Esther is definitely much lighter than she should be although her height and weight are just about in proportion. I looked at the details on the charts and she's about 25th centile for height and 2nd for weight. If I could feed her up a bit more I would but she only eats if she wants too!! 
What makes me laugh though is that when she was born she was on the 75th centile for her weight and somewhere between 50th and 75th for height. Both just dropped right off though.


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## sequeena

Oh ann I hope you are better now xxx

How is everyone?

Thomas has had an appointment explosion. He has 13 within the next 3 weeks. Crazy. We do however have a date for his wheelchair fitting. 2nd september!! And on the 1st he FINALLY sees his paediatrician! 

I feel like he's had a mini developmental leap lately whether it's enough? I don't think so but we're heading in the right direction.


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## Peanut78

Hi all, I need to do a major catch up in here!!! :dohh:

I just wanted to let you all know that we are on the cusp of some major life changes. We are moving to Kenya (I used to live there so am super excited to be going back!), I have found a sensational small and intimate school where I feel really confident will suit T. 

Part of the reason behind the move is because of how bad we feel the school has been here for Theo, the other is OH got a major promotion :thumbup:

Will catch up and send a longer update later!


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## emyandpotato

That's amazing Peanut! I'm very jealous, what an amazing opportunity for you all!


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## annanouska

:hugs: hi everyone!

Loosing the will a bit here, I'm still off sick and not allowed to drive until I see the neurologist but no appointment yet. I'm finding buses hard with him as its unpredictable :wacko: 

We had ot yesterday I found it the best appointment we have been to yet. He has been diagnosed with sensory processing disorder which explains a lot still waiting on the EEG and also his autism bits x


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## emyandpotato

I got Rory's full paediatric report the other day. About 6 pages. I feel a bit sick really. Loads of stuff was listed- wide gait, hyper-mobility in leg joints, spongey muscle tone, poor reflexes, difficulty with motor skills, obviously speech, global developmental delay, potential soft palate, potential chromosomal problems... Much more than I thought was wrong with him. I never thought he had a problem with fine motor skills. I didn't know anything about his muscle tone or reflexes. The thought of chromosome problems really scares me. He's just started speech therapy through nursery and she thinks he doesn't understand things, but I think he does? I dunno. I feel really shitty and like a total failure. I am convinced I did something in my pregnancy, like it was fumes from painting the nursery, or because I drunk before I found out at 6 weeks, or I didn't eat healthily enough or something. I just feel so shitty. I am so worried for his future, he already struggles making friends because he can't talk and it obviously upsets him. I don't want him always to be left out. Sorry for the ramble, I am feeling really down about it all and unsure about the tests he still has to come.


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## annanouska

:hugs: its not your fault. It's very natural to blame yourself, your job is to protect your son and give him the best and with him struggling its an easy solution to blame ourselves. You are doing the best for him and giving him the best start possible. 

It can seem very bleak written down and when there's more than you realised its harder so. He's still the same boy you just have a better understanding and information :flower:

Hopefully now with the issues getting identified it will help with getting him the support quicker. Regarding understanding, my son understands a lot more at home than nursery, he gets too distracted I think.

Hope everyone is well, we have started epilepsy meds now following his eegs. His sleep has improved like nothing I thought possible. What I thought was night terrors were seizures :nope: he sleeps through at the moment buts never know. We have an MRI soon to check for anything causing the epilepsy or damage to it x


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## Peanut78

emyandpotato said:


> I got Rory's full paediatric report the other day. About 6 pages. I feel a bit sick really. Loads of stuff was listed- wide gait, hyper-mobility in leg joints, spongey muscle tone, poor reflexes, difficulty with motor skills, obviously speech, global developmental delay, potential soft palate, potential chromosomal problems... Much more than I thought was wrong with him. I never thought he had a problem with fine motor skills. I didn't know anything about his muscle tone or reflexes. The thought of chromosome problems really scares me. He's just started speech therapy through nursery and she thinks he doesn't understand things, but I think he does? I dunno. I feel really shitty and like a total failure. I am convinced I did something in my pregnancy, like it was fumes from painting the nursery, or because I drunk before I found out at 6 weeks, or I didn't eat healthily enough or something. I just feel so shitty. I am so worried for his future, he already struggles making friends because he can't talk and it obviously upsets him. I don't want him always to be left out. Sorry for the ramble, I am feeling really down about it all and unsure about the tests he still has to come.

Emy, massive, massive hugs :hugs::hugs:

I know every single thought and emotion you are describing so well. It's like being punched in the gut receiving those reports. Sometimes they literally made me feel like I couldn't see clearly, my heart was pounding and my head spinning. You are NOT a failure!!! :hugs::hugs::hugs:

If he's only just started speech therapy - it would (in my opinion) be very early days to make any assumption on his level of understanding. This can take time for the therapist and your son to build rapport. My son is not an "on demand" person and behaved very differently from the first few sessions with a new therapist to one that he was accustomed to and enjoyed working with. 

Annanouska is very right - these things can sound much more bleak and "condemning" than what they necessarily are in reality. Some things that have sounded awful and shocking to me, were actually not so bad in the grand scheme of things once I had a chance to "unpack" what it was and meant with a therapist (i.e. OT, ST etc.). Now you are armed with more information to get more help for your son. 

Annanouska, great the meds are helping :thumbup:


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## emyandpotato

Thanks girls :hugs: I think just seeing it all written down it's finally a definite issue instead of me being paranoid, or him just being a tiny bit behind. I am getting so worried about his future.


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## sequeena

It's very hard getting reports and very easy to blame yourself. Please don't xxx

Ann I'm glad lo is sleeping but how awful that his terrors were seizures :( the medication seems to be controlling it thoigh fx it keeps working

Thomas has his wheelchair :)


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## RachA

Getting the written reports is awful. I think that's always been the worst times for me. It always looks so stark. I know it's not easy to do but you really shouldn't blame yourself. 


Peanut-how exciting for you. 


We've had a good summer-we got back for a family holiday with a draft statement offering E 27 hours per week 1:1 in school. We were amazed as we really thought we were going to have to fight for the statement. But even before the school knew about the 27 hours they'd already employed someone full time to work along side E :) 
We then got her next lot of speech therapy through so that's also one less thing to fight for. 
And she's started school and looks to of settled in well. That's bit really a surprise though as she's a fairly social person. What's going to be harder is when they start doing phonics etc as she just can't retain that type of info at the moment.


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## sequeena

So my HV has now washed her hands of T and keeps saying ring the disability team :( if only his disability hv was easy to get hold of! Sigh :(

Thomas had pre school boosters today so was very upset and had his dukmy
Some busy body told me to take it out of his mouth. Why is there always one.


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## RachA

I don't get why people have to make comments about dummies. There have been times when I've wondered why a child had one when they were an older child but I'd of never said anything to the parent as it's nothing to do with me. 
Esther had hers until a couple of months ago, so was over 4 1/2 when we stopped using it. I was glad to get rid of it but I have to confess there are still times when one would be useful!


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## emyandpotato

sequeena said:


> So my HV has now washed her hands of T and keeps saying ring the disability team :( if only his disability hv was easy to get hold of! Sigh :(
> 
> Thomas had pre school boosters today so was very upset and had his dukmy
> Some busy body told me to take it out of his mouth. Why is there always one.

Eurghhh I cannot stand this! When Rory was newborn some old woman cornered me in the doctors and started telling me disgraceful it was that another child in there (who was about 2) was playing with a dummy in, right in earshot of his poor mum. And then proceeded to tell me that bottle feeding was bad for my child and I should be ashamed. I was too shell shocked to say anything, or to tell her it was EBM in the bottle. Ridiculous people. 

Also.. preschool boosters? Is this for every child? I've not heard anything and Rory and Thomas are the same age?


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## sequeena

Yes all kids get them. Usually at 3.5 but they were doing it today so we just got it over with. 1 injection and now he's done until he's 14.

It was an old man that cornered me too :(

Thomas is on another ramoage tonight. I should film him he bounced across the beds runs round constantly fidgiting etc I cannot restrain him I don't know what to do. I have to be up at 6am.


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## SammieGrace

sequeena said:


> It was an old man that cornered me too :(

People need to mind their own business! Cullen still has his pacifier and I just know he is not at all ready to give it up. I am sure the speech therapist will have something to say about it though....:(


----------



## nicki01

Having a hard time today.... The EP is going to assess Charlie this morning and I'm meeting her at 12 to start the statement! I've had to list all my concerns about her starting school! I filled 2 sides of a4 paper! 
It horrid writing it down, I'm petrified about the whole thing! I want to keep her at nursery forever. 
Its all becoming to real, the diagnosis didn't hit me, but today I'm struggling. The speech and language therapy, the appointments etc didn't really phase me!
But this statement starting has hit me hard, its real, she is autistic, she will always struggle, will she ever be fully understood, she can't express herself and her speech is so unclear and so limited. I'm so scared of putting my baby into the big wide world of school and her being a little lost soul unable to reach out when she needs someone! Being in trouble for being naughty when actually she is over whelmed and fighting her own battles. 
Wow its all just so much.
That's just a fraction of how I'm feeling right now!
I've barely slept and just keep crying!
I'm dreading going to this meeting, I don't know how I'm going to hold it together and not break down in there. 

Sorry its long! :-(


----------



## sequeena

SammieGrace said:


> sequeena said:
> 
> 
> It was an old man that cornered me too :(
> 
> People need to mind their own business! Cullen still has his pacifier and I just know he is not at all ready to give it up. I am sure the speech therapist will have something to say about it though....:(Click to expand...

T's SALT is fine about it. They understand he needs it. He only has it for sleep and when he's upset.

Nick :hugs: it's going to be ok xxxx


----------



## RachA

nicki01 said:


> Having a hard time today.... The EP is going to assess Charlie this morning and I'm meeting her at 12 to start the statement! I've had to list all my concerns about her starting school! I filled 2 sides of a4 paper!
> It horrid writing it down, I'm petrified about the whole thing! I want to keep her at nursery forever.
> Its all becoming to real, the diagnosis didn't hit me, but today I'm struggling. The speech and language therapy, the appointments etc didn't really phase me!
> But this statement starting has hit me hard, its real, she is autistic, she will always struggle, will she ever be fully understood, she can't express herself and her speech is so unclear and so limited. I'm so scared of putting my baby into the big wide world of school and her being a little lost soul unable to reach out when she needs someone! Being in trouble for being naughty when actually she is over whelmed and fighting her own battles.
> Wow its all just so much.
> That's just a fraction of how I'm feeling right now!
> I've barely slept and just keep crying!
> I'm dreading going to this meeting, I don't know how I'm going to hold it together and not break down in there.
> 
> Sorry its long! :-(

It's horrific writing the parents report. I assume this is for the statement? 
Ours was about 12 sides of printed a4 paper. I did most of it but had to hand the last section over to OH to finish as I was just so upset over it all. 

On a positive note though-I've been dreading E starting school but she's settled really well and it makes such a difference having the help in place.


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## veganmama

rachA

im just curious to how your daughters speech is doing now? i remember you from a while back and was just curious since my son is speech delayed too


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## sequeena

I can't do this anymore. No one wants to help me. I cannot do 4 hours of sleep a day anymore.


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## essie0828

Sequeena are you offered respite services at all? We were offered 160 hrs a year with DD disability waiver. I don't know how things work over there but it may be worth looking into. Sorry I can't offer something more tangible. Too bad we can't e-mail sleep. :hugs:

Hi ladies :hi: 
DD has had another 5 level assessment and it has been a little tough on me. She's scoring between 15 and 18 months for cognition and that has me worried. We met with a Dynavox rep and will be trying DD on the maestro device. It's an augmentative communication device that is based on PECS but will provide a voice with her choices. We are hoping to bridge the gap between her expressive language and receptive language. The device is complicated and I'm a little intimidated by it but we have to try something. I don't want to send her to school until she can communicate her needs somehow. Therapy is still going full blast and we have added more OT to help ready her to use her AC device. I really hope she takes to it. Love to all, especially you ladies struggling :hugs:


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## sequeena

Thanks essie. I looked into it but they don't offer it in my area until the child is 8 :(

Wow that does sound intimidating but also really cool :)


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## RachA

veganmama said:


> rachA
> 
> im just curious to how your daughters speech is doing now? i remember you from a while back and was just curious since my son is speech delayed too

Hiya

Esther's speech has improved a lot over the past 6 months. She is still way behind though. I find it hard to describe really as I obviously understand a lot of what she says whereas the majority of other people don't. 
Having said that her single words are a lot clearer. Her sentence formation is hit and miss. She says long ish sentences but only two or three words are clear. Her linking words are still missing most of the time. But she can get her point across without the need for a whole sentence. 
She really struggles to ask for things-whenever she wants something the conversation goes like this: 

E- what Esther like?
Me-what would you like?
E- like?
Me- what do you want Esther? 
E - want? 
Me - you need to say what you want
E - want? 
Me - use your words
E - words! 
Etc etc

9 X out of 10 I know what she wants as she's usually seen a toy or item of food that she wants. I know she can say the word but she just can't say 'Esther like biscuit' or 'I would like biscuit'


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## essie0828

sequeena said:


> Thanks essie. I looked into it but they don't offer it in my area until the child is 8 :(
> 
> Wow that does sound intimidating but also really cool :)

Well that's total crap huh? Eight years old!? By then he will be able to watch himself and you will be :wacko: from lack of sleep. I hope you can get a break soon hun.


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## essie0828

RachA I totally cracked up reading that conversation between you and Esther. Especially her reply to you telling her to use her words :rofl: My kiddo gets frustrated when I make her use words or signs and she gets cheeky like that. Love it!


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## annanouska

I tried to reply last night but couldn't so I've sent a link to your fb messages hopefully will come through and maybe help. I would defy push for the melatonin. I can't understand why they won't offer for you, not fair at all. Have you a date for the MRI yet? Ours is Tuesday, anyone done the head MRI under sedation? I'm fine with it I had one few weeks ago so I know what it's like just worried if sedation will be enough to keep him asleep as so loud. If not they will repeat under ga.

M is picking. Up a lot of words but can't say mummy or if he wanted a drink or food etc it's weird stuFf like what's that, oh look, right, left up down.

X


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## Boo44

Wow annanouska sounds like M is really coming on in his speech! Slow progress here as usual x


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## RachA

essie0828 said:


> RachA I totally cracked up reading that conversation between you and Esther. Especially her reply to you telling her to use her words :rofl: My kiddo gets frustrated when I make her use words or signs and she gets cheeky like that. Love it!

It is really funny reading it. We can have countless conversations like that each day. She's funny because she isn't really getting frustrated by us not understanding. 


We've had a bit of a break-through with E's potty training too recently. She's been out of nappies during the day since the beginning of the summer hols and she would never tell us until she was doing it. This last few days she's been telling us she needs to go with enough time to get her to the potty/loo before she starts going :) She also did a poo yesterday which was very exciting. She did say she needed to do a wee but when it came out it was a poo! But it was the first time she's done it on the potty so I wasn't bothered what she called it!


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## nicki01

Rach- yay for potty training, hopefully she continues to progress with it. 
We are just starting the statement process, I haven't even got to the parents report yet and I'm already a mess lol. The list I wrote was just my concerns to ask the EP about.

Sorry your lacking sleep sequeena, we have a big issue with sleep too! I don't even know how much I get a night at the moment.
Tori wakes every 2 hours still has done since birth, Charlie spends 1 till 4 or 5am awake reciting numberjacks, tori then gets up for the day at 4:45am while Charlie has an hour before being up for the day too! Its getting ridiculous, all I do if doze all night whilst trying to keep half an eye on them! I keep getting ill where I'm so run down, its horrible!


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## annanouska

We had group speech therapy today, we have been waiting ages.i didn't realise he would pick up a few random words as a result of his epilepsy being treated so obv we are still down for it. I got the cold shoulder and heard " well he's said look and light its just ridiculous wasting a space"?!?! At what point was there a mummy war as to whose child is more disabled?! Complete madness. W are still miles behind but yes made progress since medication. Most of the children were ASD and we are awaiting our assessment but to be honest things are changing a lot with control of seizures now tho we still have a lot of issues. It was discussed in. Brief conversation how it must be easy having a treatable condition like epilepsy as my son can be cured?! I honestly wonder what these people have running through their heads. With potentially being ASD himself I'm well aware of the challenges and difficulties faced. I really wanted to say, yes I just to drug him up so he's sick and passes out as he's so tired from the drugs but its fine as he's cured!!!

Sorry compete rant but I need to vent it out and real,y hoped somebody would understand,I was just trying to help my son just completely go smacked that people get competitive over who is the most behind or disabled :dohh:


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## Boo44

Oh no that sounds awful annanouska I can't believe that either. I'm so happy for you that M is improving so much with his meds including with his speech, that's fantastic!


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## essie0828

Anna that's just ignorance showing on their part. Epilepsy is no picnic and the medications are debilitating some times. I've see my little 2yr old cousin wiped out from having rescue meds. He sleeps so much when he has had them. He is delayed in speech to but not severely. He has also improved greatly since he has been treated for his epilepsy. I don't understand them thinking epilepsy is curable as well. My aunt is in her 50's and still struggles with it, has since childhood. It is manageable in a lot of cases but sometimes it isn't. It's great your little one is coming along with help from his treatment. That's a roll model for the others in the group if anything ;)


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## nicki01

Anna I can't believe you had such rude people with you. That's awfull. Epilepsy is just a walk in the park is it and you only went because you have nothing better to do.... How can people be so judgemental. Really pleased to hear his speech is coming along now and the medication is working. 

I've got tori in nursery this morning for her first full session on her own, if she manages ok. I'm really looking forward to spending the morning with Charlie


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## annanouska

:wacko: im just gob smacked people compete over whose child has less speech! I've got to keep going but I don't like it. He did tho that's the main thing. I think parenting is a big competition, I'm so uncompetitive its unreal so I'd not buy into it. 

I'm expecting him to not be picked up on ASD as he smiles and laughs has eye contact etc so well now, just need to address his OCD car lining up, sorting m issues over change and general dislike of people :haha:

I really never expected such a big change with meds but I know anything can change at any time.

Sequeena any news on t and sleep help?

Hope nursery goes ok, m loves nursery until he's bee upgraded to new room but that will come with time...he doesn't like change. X


----------



## Peanut78

annanouska said:


> We had group speech therapy today, we have been waiting ages.i didn't realise he would pick up a few random words as a result of his epilepsy being treated so obv we are still down for it. I got the cold shoulder and heard " well he's said look and light its just ridiculous wasting a space"?!?! At what point was there a mummy war as to whose child is more disabled?! Complete madness. W are still miles behind but yes made progress since medication. Most of the children were ASD and we are awaiting our assessment but to be honest things are changing a lot with control of seizures now tho we still have a lot of issues. It was discussed in. Brief conversation how it must be easy having a treatable condition like epilepsy as my son can be cured?! I honestly wonder what these people have running through their heads. With potentially being ASD himself I'm well aware of the challenges and difficulties faced. I really wanted to say, yes I just to drug him up so he's sick and passes out as he's so tired from the drugs but its fine as he's cured!!!
> 
> Sorry compete rant but I need to vent it out and real,y hoped somebody would understand,I was just trying to help my son just completely go smacked that people get competitive over who is the most behind or disabled :dohh:

:shock: - unreal!!!

Sequeena - hope you're getting some sleep :hugs::hugs::hugs:


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## sequeena

Jesus christ. Ann that's awful I'm so sorry :( 

Did you send the message to me? I'll have to get on the pc my phone won't let me see messages. No news on the sleep front really other than Thomas spends 2-3 hours in his bed every night it's a massive step forward for him. His bed is right next to ours so he's not feeling completely separated - we've co slept for over 3 years.

I am however really annoyed with wheelchair services. I rang to ask for the head rest that fits on his chair as he keeps hitting his head. When the technician brought the chair he aaid to ring and they'd send it out. It's not that simple. Because of his age I have to get a health care professional to put it in writing. Honestly! 

T has another paediatrician appointment on September 29th.


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## nicki01

Can anyone help me?! Charlie is in size 6 nappies but they are constantly leaking now, everytime we go out she is wet when we get her out the car. I've asked her pediatrician and the health visitor who I contact about getting a bigger size but they just tell me they don't know and I won't get help till she is 4.
That's fine I'm willing to pay for them but I don't know where to get them? I need a size 7, I've read I need to phone the incontinence service but I'm guessing its a different number for area and I can't find a number!!!
I'm going through loads clothes and bedding a week and its driving me nuts!


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## sequeena

Oh dear. I don't know about disposables as Thomas wears a 5 but could you do cloth?


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## sequeena

These are on amazon might be worth a go?

https://www.amazon.co.uk/gp/aw/d/B00CGXLWWE?pc_redir=1409369960&robot_redir=1


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## RachA

Nicki-is it worth trying ones like Drynights rather than just regular nappies? 

If you want to try them I've got a couple of spare packets from when my eldest used them. I don't think I'll need them with Esther.


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## nicki01

Thanks sequeena I've just found the same nappies in eBay for £2 a pack + 2.75 postage!! So may purchase some to try. 

Rach I thought about drynights but my only concern was how much they hold. She wees loads as she drinks like a fish all day also how costly they would be as I'm guessing you don't get many in a pack?

At the moment I use either tesco or aldi and I get 30 nappies for about £5.

I think when I have both girls out of nappies I will be rich lol.


----------



## RachA

nicki01 said:


> Thanks sequeena I've just found the same nappies in eBay for £2 a pack + 2.75 postage!! So may purchase some to try.
> 
> Rach I thought about drynights but my only concern was how much they hold. She wees loads as she drinks like a fish all day also how costly they would be as I'm guessing you don't get many in a pack?
> 
> At the moment I use either tesco or aldi and I get 30 nappies for about £5.
> 
> I think when I have both girls out of nappies I will be rich lol.

yeah i'm not sure how much they hold but you are welcome to try a few of the ones i've got if you want.


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## moggymay

Go for pampers 6+ in the green packaging....DS2 was a huge wetter but never once did he out pee one of those!

Rach how is Reception going for you and Esther? x


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## RachA

moggymay said:


> Go for pampers 6+ in the green packaging....DS2 was a huge wetter but never once did he out pee one of those!
> 
> Rach how is Reception going for you and Esther? x

It seems to be going well thanks. I'm getting a record back each day saying what she's done that day including what she's eaten and if she's been to the loo. She's fine going in and is enjoying playing. I think the big challenge is going to be when they start trying to teach her her phonics etc. she is tired though. 
I'm ok-i don't think my feet have touched the ground since she started as I've been helping my sister out as she's just moved back to the area from Canada. 

She's started her next block of speech therapy today-well she will do at 3pm.


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## nicki01

Thank you rach, that really kind. We will definatly sort out meeting up soon, I'm just muddling through the weeks as we seem to have hit a stage of appointments again! Dentists, dietician etc and now I've started viewing schools too! 

Thanks moggy I will have a go with them. I didn't know there was a 6+ out there! 
Wish I would have come on here last night before I ordered my shopping!! 

Which school did you go for in the end rach? I can't remember if you said?
I've viewed winchelsea special school so far but have another 7 to see over the next few weeks both special and mainstream!


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## essie0828

I second the pampers. We use those and I never get a leak unless she's wiggled out of her diaper somehow. They will fit larger children easy. Try the Pampers Baby Dry diapers, they are a little less expensive than the Cruisers and hold way more.


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## essie0828

We've started looking into preschool here and I'm not very impressed. I'm worried actually. 17 kids per class with one certified teacher, one certified teachers aid and a para educator. All kids are mixed in, normal developing as well as special needs. I don't like those odds. DD is a fall risk, big time, and her protective reflexes are terrible. Im so disappointed. I was really hoping that DD would get an aid that only has a couple kiddos to look after or something. :( I would be so much more comfortable with that if she has to be in a mixed environment. She needs to be in a classroom environment with other kids but I just don't know.


----------



## annanouska

:hugs: I wrote a huge reply last night then the iPad went flat and I lost it all grr.

Hope everyone is ok and glad things are going better than expected at school for E. 

Can I just ask, obv we all have children with additional needs....where do u stand on correcting bad behaviour. Just for the context, group salt one boy in particular is giving my ds a tough time. He's a year older than him and over past two weeks has snatched a toy car, pushed him off a trike, pushed him over to get past him and shoved him for a toy cow :wacko: now I get 100% they all have social communication issues that's why we are all there and I get that kids do these things but what is grating on me is his mum has not once corrected him, she just stands and watched or ignores isn't pretending she's not seen. I do correct ds eg I will say we don't push, or lets share etc as I feel I need to model the right behaviours and if he is confirmed ASD the sooner I do this the better it fits In routine. 

I just wanted to know if I'm being overly sensitive or unrealistic expectations? I dont want to mention it to the salt running it if I'm being ott andy honestly wouldn't mind if she atleast corrected her son :shrug:

It's a very weird place, nobody seems to want to even help their own kids but me :nope: x


----------



## sequeena

Hmm it's quite a tough one as obviously our children have less understanding and/or are more impulsive than a child their age. Thomas isn't particularly 'naughty' (I hate that word). He's quite gentle so he is the one that has toys and such taken off him. Lately he's been quite bold ie at the children's disability centre there is a ball pit and when he's in it with other children he throws balls at them. A lot of these kids are younger and smaller. I tell him no we don't throw balls but if he continues to do it I remove him from the ball pit and give him something else to play with.

I do this with a lot of things but if he ever hits/bites/pushes I remove him from the situation straight away. I have tried time outs but he really just doesn't 'get it'.

I would never not correct him because of his additional needs.


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## annanouska

:thumbup: that's what I would do too. I'd not expect any if them there including my ds to do timeout, none of the, can even sit I. The circle for the whole story time :haha: I would have thought tho u would just explain be gentle or share etc :shrug: I'd have no issues with for example what you explained you do with T, I wouldn't even want her to remove him just acknowledge and try to correct :shrug:

Is very tricky isn't it as I'm sometimes thinking why am I bothering as it must be confusing whe I keep reinforcing a certain behaviour and he only experiences e opposite. Ohhhhh what fun!!!!

Hope U are getting some sleep? Have you had the MRI date yet? The couldn't wake m up after his at all :wacko:


----------



## Peanut78

Hiya!

Rach - great E is doing so well! :happydance:

Essie, I'm sorry to hear about the school situation :hugs: As you know we had a very rough ride with T's school over the last year (for a whole host of reasons - mainly incompetent teachers tho!). It's one of the reasons we decided to move. Are there no other options? Could you bring in learning support for her?

Anna, with regards to the discipline - T understands so I am fairly firm with him. He's pretty well-behaved and gentle for the most part tho (his brother is another story - :winkwink:) Where I try and be a bit more forgiving, but still firm - is when he gets frustrated because he can't communicate something and throws a wobbly. I realise some children with special needs also have behavioral issues, but I would absolutely be expecting the parents to manage that in some way or another :shrug:.


----------



## sequeena

I'm so upset :( I'm putting on a brave face but I'm hurting so much.

I saw T's paediatrician today who had the results of his assessment. He's delayed by 2 years in almost every area of development. Now I knew he wouldn't have made a big leap forward in development despite his progress but this really hurt me a lot.

Some positives have come from it - he's having a blood test to check his blood coagulation because of how he bruises and we FINALLY have a referral to a geneticist. So things are moving forward in some respects.

I just feel so down about it all I'm fed up of constant questions from strangers I don't want to go to groups or nursery seeing other kids just makes me more upset.

I hate this.


----------



## emyandpotato

sequeena said:


> I'm so upset :( I'm putting on a brave face but I'm hurting so much.
> 
> I saw T's paediatrician today who had the results of his assessment. He's delayed by 2 years in almost every area of development. Now I knew he wouldn't have made a big leap forward in development despite his progress but this really hurt me a lot.
> 
> Some positives have come from it - he's having a blood test to check his blood coagulation because of how he bruises and we FINALLY have a referral to a geneticist. So things are moving forward in some respects.
> 
> I just feel so down about it all I'm fed up of constant questions from strangers I don't want to go to groups or nursery seeing other kids just makes me more upset.
> 
> I hate this.

Huge hugs sweetie. Sorry you're going through this.


----------



## nicki01

Sorry your feeling crappy sequeena. 

How long will the blood test and referal take?


----------



## sequeena

Well we're taking him for the blood test this week - I don't know how long it will take though.

The paed said she'd see us in a few months after we've seen the geneticist so I imagine we won't see the geneticist until after Christmas.


----------



## sequeena

Thank you both, it's one of those 'fuck this shit' days.


----------



## emyandpotato

Yep. Just had one of those weekends so get how you feel. My 18 month old niece has more words and is way more mobile than Rory. Didn't realise as hadn't seen her in nearly a year but just saw her this weekend and got a total shock. She can walk further than him too. 

I know there is nothing that can be said to make you feel better right now, and it truly is a shit situation for you and for Thomas, but I honestly think that our children struggling in their various ways at the moment due to the problems they're having with development and health and everything else will make them more loving, compassionate and understanding people later on, whether they catch up or not. They're getting probably more individual care and attention than other children who naturally don't need it as much, and they're also learning to deal with their own frustrations and learning that not everyone is equal. And although the situation is far from ideal I think everyone's LOs will grow up in to amazing young people because of it.


----------



## Feathers

Big hugs to you Sequeena. Assessments can be horrible because it doesn't change who our LOs are but to hear it put as they do hurts for them doesn't it. I'm sure Thomas will slowly get there at his own speed and in his own time. I know it won't make you feel better though. Did they say if there was any other support he could have?

I had my six monthly appointment with Olivia's consultant yesterday. She seemed to think we had seen the Geneticist again (we hadn't) and started talking about Noonans Syndrome as though we knew what she was on about (we didn't) and then told us not to worry and that she'd chase our genetics consultant for the appointment. She didn't want to talk much about what Noonans is despite us asking. Cue google when we get home. It was written in her notes I saw so I guess they are pretty sure it's a possibility to be there. Which means we maybe have a diagnosis coming soon. Trouble is Noonans comes with an 80-90% chance of heart issues as well as explaining her feeding issues and many other things including development delay so obviously now very worried.
Going to chase that appointment myself today. I felt awfully worried last night and upset over there probably being a genetic problem that won't just go away (which is my pipe dream hope as stupid as it is.)
Also being referred to an Autism specialist for assessment due to Olivia's behaviours (apparently Noonans increases chances of having autism too).
Feeling more than a little shell shocked but trying to just get on with it today because...well we just have to don't we.
Portage finishes at Xmas for us as it doesn't continue here past three year old funding. Nursery will apply for Portex which takes place there instead and are working with us on slowly gathering evidence for statementing as well as finally applying for some 1:1 hours for her. We have a new SENCO there and she's much improved on the last one. Her IEP is far better. So some ups and downs as always lol.


----------



## annanouska

Feathers there is another lady on here I know from a diff thread whose son is having ongoing assessment for noonans, he is younger tho about 18 mo I think. They are already aware he has a "small" heart issue but he is doing well. I will direct her tho this thread as she too was finding not many know about noonans. 

Sequeena :hugs: I think with any child who has an additional need its unfair to compare to the averag child. If you have seen changes,improvements, new skills then that's fantastic. It always bewildered who the doctors compare to as for example he is between 12-18 mo developmentally. A "average" child of that age can vary so dramatically in their skills too :shrug: even at 27 months with 5 single words and 3 completely random longs entrances some people tell me that's "normal" for his age :growlmad:

Did you get anywhere about the sleep? Tag would make such a huge difference as to how you cope. Good luck with the blood tests too, hopefully you will,start to get some answers. Have they checked his iron etc? I never knew how much an iron deficiency apparently affects development.

You still need to go to playgroups etc for Thomas, I know its hard and the questions get boring but I try to remind myself I do it for him to show him he is the same as others and can join in just as much (within reason!). 

X hope today is a better day for everyone x


----------



## RachA

nicki01 said:


> Thank you rach, that really kind. We will definatly sort out meeting up soon, I'm just muddling through the weeks as we seem to have hit a stage of appointments again! Dentists, dietician etc and now I've started viewing schools too!
> 
> Thanks moggy I will have a go with them. I didn't know there was a 6+ out there!
> Wish I would have come on here last night before I ordered my shopping!!
> 
> Which school did you go for in the end rach? I can't remember if you said?
> I've viewed winchelsea special school so far but have another 7 to see over the next few weeks both special and mainstream!


We went for the same school that our eldest goes to in the end. At the moment I think it's the right choice. I think it's doing them both good to be at the same school. If she doesn't progress as well as she should we will re-visit the situation. I felt quite strongly that E should be in mainstream school as she needs children who are talking etc around her. 

Which mainstream schools are you looking at? If you'd rather you can PM me with them.


----------



## RachA

Sorry about the assessment Sequeena. I hate how these things make us feel. 

Has T fallen behind or was he at 2 years behind at the last assessment? 
We kept hoping that E would improve a bit at each assessment but she hasn't-she keeps being about 18 months behind. 

I find it so far seeing other children. We met up with OH's wider family in Saturday and there were 14 children there ranging in age from 12 months to about 10/12 years. Apart from the 12 month old they are all further ahead than E. Obviously the older ones would be! 4 of the other children are younger than E and they talk better than her etc. 
But I have to say that E is very precious. She's happy and smiley etc. idk-it seems to me that children that have 'issues' are something special and have a contentment that other children don't.


----------



## sequeena

Thank you everyone. It's definitely been a hard pill to swallow I've been in a bit of a daze most of the day. I'm just so upset about it all and even though things are moving in the right direction i know it will be a long time before we get a real diagnosis, if there is actually one. A friend sent Thomas a wonderful sensory toy via prime (amazon) to cheer us up I'm so grateful.



Rach Thomas started off as 12 months behind. Then it went to 15-18 months and now it's 2 years. I'm so afraid the gap will just keep widening.

Thomas is definitely a content child (when he's not on one). People are forever commenting on his smiley and gentle nature.


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## Quackquack99

Hi girls, i apologise if I'm in the wrong section but has had a speech delay for over a year now. Ive had different speech therapist and gps tell me that there isn't any issue. Now summer has started nursery three weeks ago and yesterday the manager requested a talk as she and others have some niggling concerns about summer and that they wanted me to fill in an IDSS form to allow someone to come and assess summer which i completely welcome. She did say that speech wasn't their only cause for concern. I don't even know what to expect now and feel like an assessment should have been done sooner than now.


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## sequeena

Hi quack welcome :) my son's problems were picked up at 17 months so before nursery but I imagine your LO will be assessed in nursery then referred to a paediatrician if needs be. I'm sure someone else has better advice x


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## Quackquack99

Thank you sequeena, I went and googled IDSS in my local area and its all about offering support to children with additional needs. I feel so down, I thought by three summer would have caught up. The nursery have said they will do all they can to help which is a positive and im pleased.


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## sequeena

Quackquack99 said:


> Thank you sequeena, I went and googled IDSS in my local area and its all about offering support to children with additional needs. I feel so down, I thought by three summer would have caught up. The nursery have said they will do all they can to help which is a positive and im pleased.

Have nursery said what their concerns are other than speech? Often just a speech delay can be tackled very well with therapy :)


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## Quackquack99

They were concerned about her communication, listening and understanding. They have told me she is very difficult to settle when upset and how she has fluff to comfort her. She has had a speech therapist for 14 months and her progress has been slow but i know nursery feel like they have a year to try their best before she starts school. I could always tell a difference between summer and her peers.


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## bumpin2012

:hugs: sequeena. Your little man is just gorgeous though! Hope he's enjoying that new toy.


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## nicki01

Rach- I've looked at winchelsea, and have left to view linwood and springwood campus special needs. My mainstream ones are kingsleigh, bearwood and malmesbury park (they have an autistic unit in the mainstream school)
I start viewing all the others next week!
Nursery have high hopes that she can attend a mainstream and I'm thinking that the direction I will head but am viewing special needs too so I can compare them.

We have been having a real tough time with her since Thursday, she keeps getting so angry and attacking me, she rips my hair out, bites, punches, pinches, kicks me, headbutts, my head is covered in lumps and when I brush my hair the hair brush just fills! Its horrible. She goes for about 20-30 minutes constant and then just breaks down in floods of tears and sobs, if I leave the room to get myself away from her she tries to break and smash things, I've no idea how my tv is still in one piece!
Its was just me she goes for but on Monday she done it to her SENCO at nursery. I warned them but she was still stunned about savage she got.
I've tried everything to stop her and snap her out of it but she continues untill she breaks down.
I hate how its making me feel, I've walked away a few times thinking how much I dislike her, but I know I don't, I just dislike the behaviour but its hard.
I'm on egg shells worried that something will kick her off its just awfull. 
When she is good she is amazing, the most polite loving girl you could meet, obviously has her stuggles and plays up but still she is just fantastic, but when she starts she is awfull, like she isn't there, just a blank angry child that I really can't control! :-(
It must be so horrible for her to get like that but I don't know how to stop it or help her!!


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## lindblum

it's been a long time that i posted on here, hope you don't mind me popping in again.

sequeena, i hope you are feeling better. my child had an assessment at age 5 and was 18 months behind, within the 8th percentile :( It's really a really horrible feeling isn't it, especially when you know how much progress they've made in their own right. It feels like they aren't getting anywhere. 
I know our children don't have the same needs, but i've noticed as mine got older, she started picking up things a lot quicker. I'm really proud of where she is now, she's nearly 7. Although not the same as her peers, she has done amazingly. Last year in year 1, she went up 3 reading book stages. She's a really happy child and she always tries her best. That means a lot to me. The best thing we can do is continued encouragement. 
sorry if i've rambled on but reading your post just brought back the memories of that day. I've kept the report. I plan to show it to her when she brings home her top gcse grades to show her how well she's done :D

nicki01, i used to feel the same way about my oldest. i only ever told my sister out loud about how i much i didn't like her. she's not autistic but she was extremely aggressive and tantrumed a lot. i remember once she pushed my 2nd child, then a year and a half, down the stairs. She couldn't even talk to tell why she did it. I was so furious i wanted to shake and scream at her. I sent her to her room instead. She's better behaved now ever since she started talking. I don't know how it works with autistic children, i hope you are able to find a way to help her deal with expressing herself. I don't know whether it's any use to you, but i used to ask my daughter to point or show me what it was that she wanted to prevent her getting frustrated. x


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## RachA

nicki01 said:


> Rach- I've looked at winchelsea, and have left to view linwood and springwood campus special needs. My mainstream ones are kingsleigh, bearwood and malmesbury park (they have an autistic unit in the mainstream school)
> I start viewing all the others next week!
> Nursery have high hopes that she can attend a mainstream and I'm thinking that the direction I will head but am viewing special needs too so I can compare them.
> 
> We have been having a real tough time with her since Thursday, she keeps getting so angry and attacking me, she rips my hair out, bites, punches, pinches, kicks me, headbutts, my head is covered in lumps and when I brush my hair the hair brush just fills! Its horrible. She goes for about 20-30 minutes constant and then just breaks down in floods of tears and sobs, if I leave the room to get myself away from her she tries to break and smash things, I've no idea how my tv is still in one piece!
> Its was just me she goes for but on Monday she done it to her SENCO at nursery. I warned them but she was still stunned about savage she got.
> I've tried everything to stop her and snap her out of it but she continues untill she breaks down.
> I hate how its making me feel, I've walked away a few times thinking how much I dislike her, but I know I don't, I just dislike the behaviour but its hard.
> I'm on egg shells worried that something will kick her off its just awfull.
> When she is good she is amazing, the most polite loving girl you could meet, obviously has her stuggles and plays up but still she is just fantastic, but when she starts she is awfull, like she isn't there, just a blank angry child that I really can't control! :-(
> It must be so horrible for her to get like that but I don't know how to stop it or help her!!

Malmesbury Park Rigs unit is supposed to be really good-one of Edthers friends from pre-school started this Sept. I think you need a statement to get in there though. 
If you are looking at Bearwood/Kingsley area then look at Christ the King. It's a Roman Catholic school but I don't know how strict they are about entry and it's not in your face RC. It's a really good school though-my nephews went there and did really well. Not sure what your catchment area is (although if you get a statement that doesn't matter as you can request anywhere) but you could also look at Hill View as that's a really good school. 


It's really hard when they behave like that. My eldest isn't autistic but he would have major tantrums that involved getting very nasty and quite violent-in the end we found that leaving him to get it out of his system worked best. Quite often we'd put him in his room as there wasn't as much to break in there. Esther also throws and pulls things when she gets frustrated. I can usually distract her but not always - if I can't I try and leave her if it's safe to do so. 
I remember feeling like you do-I hated my sons behaviour and I didn't like being with him. Now though he has calmed down a lot. I think it's hard got them when they can't express their feelings properly. Also though they find it hard to understand what they are feeling and I think that makes them lash out.


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## nicki01

Lindblum- I do think alot of It is frustration and lack of understanding as it normally happens when its time to come in from the garden, or sit at the table for dinner or bed time. I don't think she gets why she has to do these things and also doesn't want to but with her lack of speech can't communicate 100% to talk to me about it! 

Rach Christ the king is another I need to call.
I did hear good things too about hill view but am not 100% exactly where it is. Will need to look into that this week I think. I think its redhill way but I haven't seen a school round there. 

She had an amazing morning at nursery today, no outburst at all and co operated with everything which is music to my ears. I have been quoting to her 'hurting is finished, now kind hands' religiously, at the dinner table, when I put her to bed and when I drop her off.
When I picked her up I asked her if she had been good and she said 'kind hands mummy' so she must have remembered what I said when I dropped her off! I'm on cloud nine about that lol!


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## essie0828

Nicki that's adorable. "Kind hands mummy" She knew that would make you proud. Beautiful. :)

Sequeena try not to lose heart dear :hugs: Numbers like that are hard to swallow, most definitely, but he's doing so much more now than he was when you started this thread. F the numbers and the gaps. I've seen so much positive change, even from afar. He will get there hun, just in his own way and own time. Keep up good work mama :thumbsup: I understand that it really is a kick in the gut though, I've just been through Hayleys 1 yr reassessment. :hugs:

DD climbed/fell out of her crib for the first time today. Luckily she was unscathed. Little thing didn't even whimper. It's a bit of a happy milestone really. We have always heard people say "Just wait till she can get out of her crib." but that time never came. Then after her diagnosis we understood why. Now it has finally happened :cloud9: Am I a weirdo for being happy that my daughter moved well enough to fall out of her crib? I hate that she fell but I'm so damn proud she climbed up to do it :wacko:


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## Quackquack99

I had a bad day at nursery yesterday. I had a look at an assessment they did of summer and atm they think she is currently in 16-26 months for pretty much every area. How do you ladies stay so strong? I cry just thinking about it.


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## nicki01

We don't stay strong quack, well I don't anyway!! I still crumble all the time, have good days and bad days. Yesterday was a fab day where I could forget about it all, Charlie was on top form, but its was after a week of a massive low.
I'm sat outside the dentist right now, Charlie has an appointment in 30 minutes, fingers crossed she is a little star!!

I can't say it gets any easier to see that they are behind on development you just move on from untill the next time! :-(

Charlie has another parents evening in November where I will see te latest report and I'm hoping it will be much better than the last as I think she has come along way since the begining of the year but I could be shot right back down again I guess!


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## RachA

Essie-I'd of been proud of that too :) 

Nicki-yes Hill View is in Redhill

Quack-as Nicki said we don't really stay strong. Every time I think of Esther at school I want to cry because I just can't see how she's going to learn anything when she can't even talk well. But I don't because if I do I'm scared I won't be able to stop and I've got Daniel to look after too. I think you just get to a point where you cope. I know it seems bleak but the range if 16-26 months covers a lot and what the form doesn't show you is where abouts in that range they are.


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## annanouska

Nicki it was nice toured your post as its reassuring I'm not alone:hugs: Marcus behaves like that with me.he caught me so hard in the wrong bit head butting me in bed the other morning I blacked out :nope: his new one ismtompull my hair then sink his teeth into the top of my skull:cry:

I've been told it may be language/communication frustration, a way of dealing with emotion or a sensory input :shrug: he mainly does it to me tho same as u once he went for key worker. I wonder if that is because she replaces me as such when at nursery.

We have been told he has disordered language ATM. He had his ADOS but he scored well as he has great eye contact but he will still get a team review.

This is the picture so far...
- epilepsy now under control :thumbup: 
-about 10 sing words and 3 random long sentences yet he can't say mummy or drink etc?!
- aggression
-social avoidance but happy to be in same room as other children now
- spins
- licks, Stims and chews ( they say this is his sensory processing) 
-obsessive over routine
- obsessive over lining his things up and you can't touch them or move.

I really feel he is on the spectrum but he does have great eye contact and laughs etc. they don't seem to want to commit to that yet :dohh: xxx


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## nicki01

Our LOs sound very similar, Charlie went for her SENCO on Monday as she is like my replacement in nursery, I think they do go for those closest. 
Charlie started singing and had repetitive sentences before she started to talk, about 6 months before she would sing and pick up nursery rymes really quick yet couldnt talk! And she has only been calling me mummy for about 8-10 weeks now. 
She also avoids social situations but will happily play in nursery where there are other children, only in the last few weeks has she started to acknowledge the other children and that's only on a good day. 
It must have been scary to black out! Charlie is so so strong, I can't keep a hold on her when she flips, and struggle to get away once she has me in her grip.
She decided to show all the expectant mums and snobby turn your nose up mums in mothercare what a meltdown was today!! That was interesting to say the least! Heard the staff say if she doesn't get control of her soon we will have to ask her to leave!! :-(
She wasn't hurting anything or anyone, ok maybe their ears but no damage was being done, I was just standing there holding onto her reins whilst she had a freak out on the floor, I made sure she was away from people and shelves, if I try to stop her it prolongs it so I just have to stand and wait for her to finish herself.


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## sequeena

Thanks for your support everyone. I'm sorry I'm not around but I'm still feeling really sensitive and upset. Hugs for everyone x


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## annanouska

:hugs: sequeena your little Thomas is such happy and beautiful boy. I know its crappy right now but u will get there, look how far you have come. Do ty those sleep people, they sent our "programme" it's so cut he has a social story about sleep and a special digger reward chart etc. it as just nice they really tried to fit around his likes etc.

I would have had to say something in mothercare, that would have really got to me. I try to move him if he's having a meltdown somewhere safe a quieter if I can even just the entrance bit in the corner but that's because he goes on more witht all the hustle around its too much sensory for him xxx


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## DHime

Hi not sure if i introduced myself on here...... i have been following you all. My son has many issues and his asd eval is in 2 weeks. 
He has multiple birth and medical defects so i understand the daily battle to not cry and scream. Many ask me how i do it...... lol i have no choice do i?
What are you all dealing with? Just want to get to know you all.....


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## annanouska

:hugs: your little man is just a couple of weeks older than mine. Hello and welcome. My son has sensory processi g disorder, language disorder, epilepsy and is ongoing monitoring for autism. We are currently I. A really good place but I know how quick that can change. I sometimes feel a bit of a fraud as our needs are not as great as some others on here but everyone is very kind x


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## Vampire Mom

Mind if I join?

Hannelore has seizures from drug exposure in utero (why it took so long to strip parental rights gets me in a lather.....), plus Noonan and Ehler Danos. With all the fun extra disorders that go with NS and EDS.

No intellect delays but some delays in ability to express herself. Verbal was starting to catch up but took a hit with new medication for seizures. But we'll take that over two or three seizures daily. 

Motor delays are about 12-18 months delayed. Not quite walking unassisted yet, getting there slowly. Has KAFO if we're working on standing and walking, wears AFO if I'm just letting her crawl around at home. PT says that's fine, so some days aren't worth fighting. The hypermobility just isn't helping. Starting to think a wheelchair may be needed, but no one has said yes or no really. Right now, she gets around fine at home and stroller or carried out on the town.


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## RachA

Hiya and welcome to our ever expanding little group. Sounds like you have a lot going on with your lo.


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## sequeena

Hello and welcome DHime and Vampire Mom :hugs:

DHime we don't have a choice... this is our norm... imagine our life if we did not have all these extras! It is normal to feel overwhelmed and frustrated :hugs:

Vampire Mom my son got a wheelchair a month ago and I can tell you it has made SUCH a difference to our life. Before the wheelchair we had to carry him everywhere as he is too big for pushchairs and isn't safe in them. The wheelchair has saved my back for one but it also allows him to interact with the outside world safely and he has started deciding himself when he wants to walk and when he needs to rest.

My LO also has hypermobility syndrome (hyperflexible in pretty much every joint), hypotonia, hypoplastic thumb (from polydactyly), Global delay of 2 years, sensory, behavioural and sleep issues. He also has a few other medical things with his eyes and such. He's just been referred to genetics and it's very likely he has EDS joint hypermobility but he also has markers for other syndromes so we're just waiting.

I'm not sure where you are Vampire Mom but this is Thomas' wheelchair just to give you an idea of what your LO may get in the future. We're in the process of getting a head rest for him.

https://www.specialistwheelchairs.co.uk/sites/default/files/2p_k-junior_eu_page_2_image_0006_page_3_image_0004.jpg

Thomas' brakes are on the wheels though not the handle.

Thomas has Portage tomorrow afternoon and as usual he's still wide awake. Honestly child sleep!!!!


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## sequeena

Hahaha I just read one of my first posts in this thread (OMG can you believe we've been chatting for over a year??). I wrote that Thomas' development was the same as a 1 year old.... his development is still that of a 1 year old he just got older chronologically. Not sure what the point of this is but in a really weird way it's made me laugh!!


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## Vampire Mom

We're in the US. The NS means she's a tiny one, so she's easy to carry. But since I'm high risk, I can't carry her. She happily gets into her stroller however and we go with that. Plus if she gets help, she can walk a bit. But the gross motor delays of NS with the joint laxity from EDS means walking will probably be a challenge always. Just got a new van, she crawls to the door, I walk her to the van, she pulls herself up to her seat. Out, she pulls herself to her stroller and we zoom off.

PT is hoping she can get walking since she can stand with support at a table. But we're starting to say that she has limits right now. 

But she's perfect no matter what. Even if she somehow picked up my bad language. Oops.


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## Vampire Mom

Well, the appointment today was interesting. Her walking issues are because her hips over rotate. But she's not a good surgical patient so not much we can do. Need to see Dr F for more advice. She's the one who first suggested a wheelchair. 

Logically, I know if her joints aren't stable enough to support her, she needs a chair. But it sure feels like we're giving up.


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## essie0828

Hi ladies :hi: Hey you new girls ;) Vampmom where are you in the States? 

Well ladies I have a whole bunch of crap on my mind and naturally I come here first ;) So the long and short of it are: I think my husband has EDS. I think this(along with other factors) influences our high miscarriage rate. I am bitter and our relationship is rocky, in part(again other factors) because of this. Wow! There I said it. Brutally honest. I will never say that to him but I really do think it. I have loads of evidence. He matches every diagnostic criteria to be diagnosed with it here in the States. I'll try to post a good link supporting this at the end. He even agreed and demonstrated every damn hyper mobile "stretch". He got the highest score on that, hyper mobile in hands, ankles, especially knees and back. He's Stretch Armstrong! It's crazy! Of course this is not new to me. He's a boy from the same rural town as me, born and raised, went to the same high school. Married as teens, I've seen him do things, bend and stretch. He can pull his skin away from his body in areas like I've never seen anyone else do. His buddys' are always like, " Hey, do that (random gross thing), and everyone loved it. He made it funny. His eyes are almond shaped, very much, and they slant (droop if you will). His medical past is complicated. He was completely disabled as a kid, up until we shacked up. He got a job, got way stronger and had fewer problems. His mother is a strange one. She doesn't like to tell me about his health issues as a kid. I have pushed the issue and got very little. I'm convinced he was misdiagnosed with JRA as a kid and his problems with his joints were from hyper mobility. I do keep in mind that these are relatively new syndromes and genetic testing just didn't happen back then. Yes we are old ;). I think we need to have genetic testing as a family. I have no clue how to go about that. We have been very careful to avoid pregnancy since the mc in April. Blah, that in itself sucks. I kinda want another little one. I think he does to but we are falling apart. DDs issues, his issues, my issues, lol, we are just stretched thin. If you have read all this and not fell asleep I would be suprised. :haha: Thanks for letting me get this crap out in the open. And now for that link.........


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## essie0828

https://taurina.deviantart.com/art/Useful-to-help-diagnose-Ehlers-Danlos-Syndrome-377584559


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## essie0828

His Beighten Score was 8/9. He met both major criteria and several minor criteria, especially when he was younger.


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## Vampire Mom

We are in Nebraska. UNMC is our usual hospital/specialist group. They're really nice, treat Hannelore so gently, and do work with each area. Some NS therapy is contraindicated in EDS for example, so they work to find therapy that helps her versus harm.

But there's only a few EDS experts in the US. Two wouldn't take her as she's got NS. Yet the one with a cardiac background refused her because of NS cardiac risks. Dr F is in Baltimore, so it's quite the trip to see her. I called to set up an appointment, sent pictures and her history. Dr F called me that day and said to let her office know when we could get to Baltimore, she'd get Hannelore in that day no matter what. 

But if it's seen in EDS hypermobility, Hannelore shows it. She's dislocated 9 joints in one seizure. Her upper body is better since she pulls herself around at least. 

But we have an appointment with Dr F in November. So we'll see what she says. I honestly think this may be her limit. She's tiny, 23" and 19 pounds, and can't independently support her weight. She's just going to get bigger, making this worse. Plus, she badly wants more mobility, but has melt downs because she can't. 

But, I still feel like we would be giving up. Doesn't feel like there's any good answer.


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## sequeena

I know some of you have experience with seizures/epilepsy. A nursery nurse at the children's centre thinks Thomas may be having absence seizures. He went into a trance lasting around 10 seconds and she couldn't get his attention. She asked if he does it at home and he does several times a day but I thought he was day dreaming. I'm going to monitor him and ring his paediatrician but does anyone else's child have this? I know that the majority grow out of it but it is managed with medicine.


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## Vampire Mom

Yup, Hannelore has those. Unfortunately we haven't found a medication that controls those without negative side effects.


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## sequeena

Vampire Mom said:


> Yup, Hannelore has those. Unfortunately we haven't found a medication that controls those without negative side effects.

Oh no that's awful :(


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## Vampire Mom

sequeena said:


> Vampire Mom said:
> 
> 
> Yup, Hannelore has those. Unfortunately we haven't found a medication that controls those without negative side effects.
> 
> Oh no that's awful :(Click to expand...

Her new protocol seems to reduce them and they're short (10-15 seconds) and 2-3 a day. 

Tegretol did stop them, but she was extremely violent - husband and I both have scars from her - and we found out the violent fits were seizures. So not worth it.

Cocaine and methadone do not do nice things to developing fetuses. The seizures are from that, so they appear stable and not getting worse. But we haven't yet found whatever is 100% effective for her.

But under 60 seconds of minor seizure activity daily is better than 90 minutes daily and usually one 30+ minute seizure that warranted an ER trip.


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## essie0828

My little cousin has absence seizures as well. We all thought the same about him, that he was daydreaming. They were very short and until he had a really bad one no one knew. That's a bummer that T might have them. Medication for it is tricky, some of it makes kiddos really tired. I do have to say that since starting the meds for epilepsy my little cousins speech improved a lot.


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## Vampire Mom

T has sleep disorders, correct? I want to say it's Keppra that helped Hannelore most with absence seizures, but she's on three drugs (phenobarb and gabbapentin) so I'm not sure which does more. But any of those have helped her to rest at least. Some nights are not sleeping, but she stays in bed.


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## Vampire Mom

Today was pretty decent. I was testifying in court suddenly - supposed to be Monday. Bribed Hannelore to get dressed and moving, then she sat with her honorary grandpa Papa Mike and watch videos on the tablet. But she was quiet and calm for 4 hours. Then dinner with Mike and Sandra, and Hannelore fell asleep on the way home.

I was expecting toddler tantrums, but she didn't have any.


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## annanouska

I would request an EEG though your paediatrician or gp tho id imagine gp may tell U to go to paed!

My sister had them untreated and was ok, just a bit slower learning Marcus has them and obv his night seizures too. The tegretol has been great for him and calmed him a lot but obv didn't work for vampire.ive heard terrible things about keppra but that seemst be helping them so the drugs are so individual.

Absences aren't in general too dangerous so can be managed just waiting them out but the can really impact learning so if offered a treatment it may be worth seeing if it helped Thomas developmentally? U would need to be guided by the EEG and MRI too.

They a terribly hard to pick up on, I hardly always notice half his absences :blush:


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## Vampire Mom

All anti-seizure drugs have the risk of pretty vile side effects. I honestly don't believe any is worse than the rest in a general sense, but based on individuals, some are great and some are dangerous. 

Suspicion on why Hannelore has difficult to manage seizures is because it's from induced epilepsy vs idiopathic. Cocaine exposure is known to induce seizures, but every child is different on how good or bad they respond. We hope she'll outgrow the seizures, but her team feel it's permanent because she does have other disorders which aren't consistent from person to person, so she just has too many things going haywire. 

Yes, we'd love her to be healthy and with fewer issues. But she isn't and she's been ours from the day the nurses let me kangaroo care her at 9 days old to try to soothe this tiny, sick baby who had no one. I broke down during the Tegretol fits because we couldn't handle her, the violence was to the point we were looking very seriously to institutionalize her, but I couldn't stand losing my child. Dr ordered an EEG then, fearing the epilepsy was getting worse, but everything looked like her normal until she started an attack. And then I broke down again because we had let our precious, beloved baby suffer for weeks and not done something sooner.

Today's news - 

Orthopedic doctor voted wheelchair. So we're ordering once Dr F recommends one. 

Vascular system looks good. Yay!

Got a new car seat. She was in a Britax Advocate, but not enough leg room with her braces. The favored US leg room seats were dangerous for her. So went with a Diono Rainier as she can put her legs over the sides comfortably. She loves it. So I love it.

We're moving this weekend, so I'll be away mostly. But yay, fully accessible house vs lots of stairs.

If you're in the US - Zinsser has a no VOC primer and Ace Hardware has Valspar Optimus which uses liquid colorant, yet is a true no VOC paint. It's a godsend! Most true no VOC paints use powder colorant that's horrible to use for even color. These are crazy $$$$$ for paint, but it's safe for me now and Hannelore with her fun. And the colors are GORGEOUS and glow in the light. And the flat works as chalkboard paint!


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## RachA

Can I just say Vampire Mom that your lo's name is do cute :). 
Did you get to choose it? 

Glad about the wheelchair :)


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## Vampire Mom

Move is 75% done. Just need to unpack, but really that's not important. All but two boxes are totes we just had for storage so they can stay. Last two are random stuff I'm not sure we need.

Unpacked only as I am not allowed to move stuff, so got a load dropped off and Hannelore and I unpacked until next load came.

Someone LOVES this house. It's all one floor so she's gone crawling all over. Plus, all solid floor which all of us like better. Some princess didn't like crawling on the rental type carpet, it hurt her hands and was unfortunately permanently dirty. She wears gripper socks inside so she can still pull to stand well and do her shuffle steps around things ok. I like that it's easy to clean.

Her room is very very purple, it's a Valspar color called Hatter's Plush. The lower wall is flat for chalkboard, upper has a beautiful rose damask print metallic stencil from my sweetest mother in law, with a metallic picture rail so someone can change pictures to her desires with some help. Plus, we have a new big girl bed with a canopy. And a fluffy Star Wars rug from Think Geek. She ADORES her room. She drags the rug around to sit on to draw on her walls. She's played happily, alone for 3 hours. 

Yes, we did get to pick her name. It's a family name, which was important to us. DH's family have considered her family from the day we got the call. We were going to lunch with his parents when we got the call about her. We cancelled lunch as such, his parents had a teddy bear for her within an hour. Someone is a bit spoiled by Grandma and Grandpa.


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## RachA

Your post made me smile Vampire Mom. Sounds like she loves her new room :) 
It's a really cute name-it's nice you got to choose it. And it's great that the wider family see her as family because actually she is. It doesn't matter that you didn't carry her or labour with her-you choose her :) 


All fairly uneventful here with us. Esther is getting on well at school. I had a bit of a wobble last week when homework was sent home. Esther didn't get any so I queried it with some of the other mums (we have a Facebook page for the reception children at the school) and some of them posted a picture of the sheet that was sent home. Esther definitely didn't get any because she's just not able to do what they are asking. 
It's also her birthday on Saturday. She's got a party next Monday-I only know 1 of the other parents so I'm going to find it hard. And unless any of the children have said anything then none of the parents know that Esther's got speech problems. I really don't want to have to explain what's going on with her but I expect I'm going to have to. Actually makes me want to cancel the party but I won't because it's not fair on Esther.


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## annanouska

:hugs: rach meeting the parents will be ok the main thing is Esther has a nice time and is happy which im sure she will be :flower: its great to hear how she is doing and settling in, I think we will be in the same dilemma as you were regarding mainstream or special. Right now I feel he's not needy enough for special school but not forward enough for mainstream :dohh: going to play it all by ear I think.

I'm bored of limbo had two meetings today with the inclusion person and hv both agree lots of ASD tendencies and deff has something going on but still can't get a diagnosis. I heard some Info from a mum whose son is quite severely autistic we know from salt and she said they are keen to not diagnose ATM due to funding :shrug:

I'm majorly struggling with this "language disorder" how he can say such long sentences but can't say basic words eg milk toast mummy food etc. he can't verbalise his needs but we had again "oh no where's daddy gone. Oh look there he is" it's not perfectly clear but could be understood by a stranger. I just can't u der stand how its "normal" / just part of disorder not a wider issue. 

I am going back to work next week after my couple months poorly. They said I HAVE to go to a meeting with occ health tomorrow but can't nderstand why its so hard for me to Bring Marcus.they know his issues but they can seem to grasp how he will struggle to cope.ive nobody to have him so I've made a now and then board and I'm embarrassed to say ill be taking an iPad and also sweets.

iPads....the specialist hv inclusion person seems to thinkipads are great for social communication issues? I try to avoid it but he does love it x


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## Boo44

Rach - I feel for you with Esther's party. There have been a lot of times I've felt like not going to things or avoiding J's friends because of glaring differences, but I suppose each time I go I do feel a bit better actually. I think I build it up in my head that he is so far behind, then the reality isn't often as bad. I do really hope Esther has a great party. I'm not sure about school and homework but surely they should speak to you to make sure you're aware of the 'usual' homework and perhaps have some individualised version for Esther?

Annanouska - how exactly does M speak? Sort of day-to-day? Does he have multiple long sentences or just the one? How does he communicate his general needs? 
J loves the iPad too. Our SLT gave us a list of apps that are often used for speech therapy I can copy it out if you like. At the moment J likes to play puzzle games and colouring games on the iPad


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## annanouska

:hugs: I'd love to know about apps! I kind of thought iPads were evil to toddlers so never really offered it before.

:rofl: how does m speak....well....he doesn't really. We are at a point where he does say a few random things now but he does t really talk. He will periodically point to the cat and say cat, door, light. He doesn't ask for anything, the only basic need type word he can say is anna for banana. Then we get to sentences...


Other ones he will say"oh where's it gone. Look there it is" "daddy gone be back soon" "where's dads car" it seems like random learnt phrases rather than an ability to actually put words together. He can say them often in context too as i would normally say things like where's dads car etc when we go on tot eh driveway. It just drives me insane as even nursery say ohhh his speech is coming along he's saying huge big chunks that's great isn't it :dohh:


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## Boo44

So frustrating when nursery etc think they're progressing yet as their mums we can see exactly what they're NOT doing. For ages Jack just seemed to say the same few things and everything else was a noise. Now he will say words but only if I encourage him, not so much on his own. It is so worrying waiting for them to progress isn't it...

Ok so apps...

Articulation station
Talking Ginger
PCS flash cards
Bla Bla Bla

I haven't actually looked at these yet so do let me know if they're any good!


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## Boo44

annanouska said:


> :hugs: I'd love to know about apps! I kind of thought iPads were evil to toddlers so never really offered it before.
> 
> :rofl: how does m speak....well....he doesn't really. We are at a point where he does say a few random things now but he does t really talk. He will periodically point to the cat and say cat, door, light. He doesn't ask for anything, the only basic need type word he can say is anna for banana. Then we get to sentences...
> 
> 
> Other ones he will say"oh where's it gone. Look there it is" "daddy gone be back soon" "where's dads car" it seems like random learnt phrases rather than an ability to actually put words together. He can say them often in context too as i would normally say things like where's dads car etc when we go on tot eh driveway. It just drives me insane as even nursery say ohhh his speech is coming along he's saying huge big chunks that's great isn't it :dohh:

Is that like echolalia possibly? Or not...


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## RachA

Anna-he sounds a lot like Esther with her speech. For the longest time she wouldn't say many single words and we've only had short sentences in the last 6 months. But she would repeat verbatim some songs and nursery rhymes and even some sentences that she learnt but didn't necessarily understand totally.
It's something to do with the way the pathways work in their brain. Children obviously learn by repeating anyway but with children like Esther it just takes longer for things to sink in. She's very visual so if there is a visual clue to the word she is more likely to learn it. Even so lots of things don't sink in (like i can't for the life on me teach her to say 'a, b, c.....'. 


Boo - yes the school are going to be sending us Esther specific homework. The reason i queried it with the other mums was because the folder that her homework is sent home in came home but with nothing it it. But Esther had been playing with it so i wasn't sure if she'd lost it lol. 


Thanks for the comments re the party - i'm sure it will go well. Esther won't be bothered by the fact no-one understands her!! After i'd picked her up from school we were waiting for her big brother to come out and she was playing on some steps near the school office. This little girl comes running out and says hi to Esther, all smily and stuff. Esther just smiled back at her and didn't say anything but the girl wasn't bothered by it - i managed to establish that she's in reception with Esther but not in the same class. I do find it amazing how easily children accept each other - wish adults were more like that.


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## sequeena

Hugs for everyone x

Thomas is a massive fan of Gigi (what he calls our tablet). Unfortunately all he's interested in is Youtube. He watches cartoons, nursery rhymes etc.

Thomas is doing so well with playdoh I'm really pleased. He doesn't like to mix colours though he will only play with one colour at a time.


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## Vampire Mom

Heh, Hannelore calls her tablet Bear. But she likes her apps. 

For speech - she has to have visual learning also. Her brain just can't learn on strictly auditory learning. Thus, tablet. She's really good at mimicking me however. Which gets hilarious on V sounds because I still have my accent. Or because I have a bad potty mouth.

Applied for a seizure and physical assistance dog. It can take a long time, and it's believed she'll need one come school. I know all these are good for her. I know she needs this. But I still feel like we're giving up on her gaining skills.


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## Peanut78

Hi All, 

Rach - I totally hear you on the homework thing and the party :hugs:

Vampire Mom - I loooove the name Hannelore so much! 

T also loves playing games on the ipad. We've been considering getting him the communication tools app as well to use in school. It's not cheap for for something to trial tho :wacko:

We arrives in Kenya last week and had our meeting with the speech and occupational therapists yesterday. I'm already feeling much more confident about the set-up here. T's school is really small and intimate - the teaching staff are keen to find out how to best support T. We plan on getting a qualified special needs teacher who can support T in school a few days a week.


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## RachA

Peanut-it helps so much when you feel that the people around you are committed to helping your child as much as you are :)


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## annanouska

Rach do u find it hard that e doesn't have a diagnosis as such? I'm findi g it so hard trying to explain his troubles but that nothing is yet confirmed. He's got so excited in sign group today the lady had to help get him off as he was pulling my hair so hard. We see consultant in a few weeks but its more epilepsym his general review has no date yet x


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## Peanut78

annanouska said:


> Rach do u find it hard that e doesn't have a diagnosis as such? I'm findi g it so hard trying to explain his troubles but that nothing is yet confirmed. He's got so excited in sign group today the lady had to help get him off as he was pulling my hair so hard. We see consultant in a few weeks but its more epilepsym his general review has no date yet x

Rach, actually I meant to ask you - are E's issues only speech related or also for wider motor skills - sometimes our two sound quite similar. :hugs::flower:


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## lindblum

RachA - My kid is nearly 7 and she still cannot recite the alphabet or sing the abc song. She gets lost after abcde and then goes into 'ffgcd' and other random letters. She can read pretty well though (reading stage 4), she recognises and can sound out all the letters, write and spell quite good. I hope you don't let it get you down x


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## RachA

annanouska said:


> Rach do u find it hard that e doesn't have a diagnosis as such? I'm findi g it so hard trying to explain his troubles but that nothing is yet confirmed. He's got so excited in sign group today the lady had to help get him off as he was pulling my hair so hard. We see consultant in a few weeks but its more epilepsym his general review has no date yet x

Yeah it is hard at times. Usually when trying to explain to someone what's the matter with her. So many people have explanations which don't work because they hear speech problems and think I'm saying she's shy or can talk but can't form the words etc. thankfully I had an amazing member of staff at her preschool who pushed and explained for me. 



Peanut78 said:


> annanouska said:
> 
> 
> Rach do u find it hard that e doesn't have a diagnosis as such? I'm findi g it so hard trying to explain his troubles but that nothing is yet confirmed. He's got so excited in sign group today the lady had to help get him off as he was pulling my hair so hard. We see consultant in a few weeks but its more epilepsym his general review has no date yet x
> 
> Rach, actually I meant to ask you - are E's issues only speech related or also for wider motor skills - sometimes our two sound quite similar. :hugs::flower:Click to expand...

It's mostly speech related. At her last review her speech/language was 18 months behind. Her social skills and motor skills are about 12 months behind. Her social skills being behind are really a direct concequence to her lack of talking. Motor skills level-she can draw and line and circle and she really tries to colour in the lines but fails totally; she can peddle a trike but not a bike with stabilisers; she can jump but chooses not to! But she can climb amazingly and dies jigsaws like a pro! 
I know-it's funny how similar they are. Most people I come across have additional issues to the speech so it's hard to relate sometimes. 


lindblum said:


> RachA - My kid is nearly 7 and she still cannot recite the alphabet or sing the abc song. She gets lost after abcde and then goes into 'ffgcd' and other random letters. She can read pretty well though (reading stage 4), she recognises and can sound out all the letters, write and spell quite good. I hope you don't let it get you down x

Thank you-that's encouraging :)


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## annanouska

:hugs: it can be hard relating and u think it makes you feel pretty crappy then :flower:

I'm 99.9% certain m falls on the spectrum but its still a waiting game. I feel this seeming echolalia, the compulsion to order and line up, certain repetitive behaviours, the sensory processing disorder, preference to alienate himself at nursery etc its all too much to just be a language disorder, not even a delay :haha:

Sadly tho I think he got the need to be generally a square peg in a round world from me! He's always been a bit u usual,he is brick from "the middle,".

He fell at the pool Sunday, blue lights to a and e, knocked himself out and cut his head open. He's recovering well but got a massive egg lump still. They glued his head and steri strips. It's at the back of the head so covered by his hair :thumbup: it wasn't nice seeing so much blood tho it was quite horrific. I felt awful as he had to be rushed though the poolside his least favourite experience x


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## sara15h1986

Hi all. 

Just thought if interest myself. 

I have a son who is 13 months old who is currently going through genetic testing for noonan syndrome. 
He isn't crawling but can drag himself around. 
He also can't sit himself up :(

I find it all very overwhelming and just really sad :(


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## annanouska

:hugs: glad u found your way over Sarah. The ladies here are really kind and I'm certain there's a couple on this thread with noonan children :thumbup:

It's good news he is dragging himself about as he is working those muscles and getting stronger. I think it is a horrible journey dealing with an additional needs child but you meet the most amazing genuine people and you really learn to appreciate your child in a different way. It felt like m had run a marathon to me when he walked :haha: x


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## nicki01

Welcome sara.
I completely agree some lovely people on here and even going to my appointments I've met some real genuine kind hearted people. 
I think having a child with needs changes you as a person for the better, as hard and horrible it can be, you certainly become stronger.


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## sequeena

Welcome Sara :hugs: it's a tough journey to be on but we're very kind here and try to help however we can.

Sorry I've not been around lately. Thomas is refusing to sleep until 3am every night and I think because I'm so exhausted I've come down with a virus and it's kicking my arse.

I've had to pull Thomas out of his nursery which I was so upset about but they're keeping his place (I won't have to pay) until after Christmas. We're going to do the sleep clinic (starts 7th November) and if that doesn't work onto melatonin. I spoke to my aunt and she will be able to drop us to nursery which will be a big help. It just depends on if we can get his sleep under control.

He has a new 'thing' and I don't know what to think of it. He's started curling himself up on his knees and just stares at the floor/bed/sofa whatever surface he's on. He will stay in this position for various lengths of time - the longest I've seen him do it is for half an hour. He's not upset or tired he will just do it 'because'. Is this a sensory thing I've not seen before?? Anyone else's child do this? I'm finding it a little weird TBH.


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## sequeena

This is what he does


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## alibaba24

I don't know what it is but I remember doing that as a child. I grew out of it x


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## annanouska

Shutdown or resting? Marcus sleeps like that and will also do it to sort of rest and calm down a bit. Could it be a retreat thing, eg sensory overload so shuts down for a bit to cope?

Fingers crossed for the sleep clinic. We've gone backwards, the meds had helped and he was sleeping g well last night up at 3 for the day.managed to get him back Down but had to repeat the whole bedtime routine story lights out etc then he accepted it was bed.

X


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## Thurinius

Not having a good morning. We've been told it's likely my son is on the autistic spectrum. Have spent all morning crying. Keep thinking back and wondering whether things we did caused this. I had such a long horrible labour, 88 hours, followed by an emergency c section. My son was in neonatal for a few days. When I got him home, I would not go so far to say I had postnatal depression but I was very down and didn't bond with him. I can remember just wanting my husband to take him away. The when I'd bee. Home only 2 weeks our landlord decided he wanted us out.
My poor sons first few months were full of stress and anxiety and I think he must have picked up on that. I don't know could that cause autism? I know. boost knows what does.


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## nicki01

Thurinius, I know your in a bad place right now but autism isn't the end of the world. While its alot to take in and quite a kick in the teeth you will adjust and it will get easier to accept.
My daughter is autistic and its coming up a year since she was diagnosed. 
What helped me was to get my thinking straight....
Today is no different to yesterday, last week, last month. You just have a word, an explanation for your sons 'different quirky ways'. That's the only thing that has changed. Your son is still your son, he will still be happy funny etc 
Having that diagnosis doesn't change anything about your son, if he has been diagnosed then he has always been autistic, the only change will be for the better, you can get help and support in the areas he has been struggling in.
You have in no way caused him to be autistic, there is nothing you could have done. 
Please don't beat your self up about it. 
Give him a big cuddle and think back, he was autistic when you cuddled him last week, you just didn't know! 

Hope that gives you some thing to think about, I know its hard, really hard to take but there is so many autistic children out there, your son will be just fine


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## RachA

nicki01 said:


> Thurinius, I know your in a bad place right now but autism isn't the end of the world. While its alot to take in and quite a kick in the teeth you will adjust and it will get easier to accept.
> My daughter is autistic and its coming up a year since she was diagnosed.
> What helped me was to get my thinking straight....
> Today is no different to yesterday, last week, last month. You just have a word, an explanation for your sons 'different quirky ways'. That's the only thing that has changed. Your son is still your son, he will still be happy funny etc
> Having that diagnosis doesn't change anything about your son, if he has been diagnosed then he has always been autistic, the only change will be for the better, you can get help and support in the areas he has been struggling in.
> You have in no way caused him to be autistic, there is nothing you could have done.
> Please don't beat your self up about it.
> Give him a big cuddle and think back, he was autistic when you cuddled him last week, you just didn't know!
> 
> Hope that gives you some thing to think about, I know its hard, really hard to take but there is so many autistic children out there, your son will be just fine


Thats a really nice way of putting it :thumbup:


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## annanouska

I kno u have been struggling with this a while from your other posts :hugs:

You haven't caused his autism at all, don't go raking up all that o,d stress it won't help :flower:

As Nikki said, your son is still your son. No different, nothing has changed just an explanation for challenges and quirks he may have. 

We don't have a diagnosis yet he's not quite 2 1/2 but he has been diagnosed with epilepsy sensory processing disorder and language disorder so far. He does display many traits and I now tend to refer to him as having ASD when ppl ask as they find that easie to get than sensory processing and the rest!

I was struggling a little at first but I just get the odd wobble now. Autism is such a huge spectrum and people tend t oly know about the worst bits.

Go and have a look at temple grandin she will be a huge inspiration that u and your son can do this 

"In an ideal world the scientist should find a method to prevent the most severe forms of autism but allow the milder forms to survive. After all, the really social people did not invent the first stone spear. It was probably invented by an Aspie who chipped away at rocks while the other people socialized around the campfire. Without autism traits we might still be living in caves. 
&#8213; Temple Grandin, Thinking in Pictures, Expanded Edition: My Life with Autism

I am different, not less. 
&#8213; Temple Grandin 

Xxx


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## Thurinius

Thank you all. Just had a wobbly morning,,I'm recovering from flu so think I'm probably just a bit down.
Today my lovely autistic son played alphablocks on the iPad and got all the answers right. Spent most the day insisting it was teatime and went down the big curly slide at the playground for the first time. Positives all round. :)


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## Boo44

I love this thread xx


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## sequeena

Thurinius it is so hard when you're ill. I've had a rotten cold and now have a cough that keeps me up at night and makes me vomit. My oh works nights so isn't here to help and Thomas sleeps around 6 hours a night. I've had 9 hours broken sleep in 2 days it sucks!!

I love this thread too I'm so glad I started it. Thomas is currently playing with his car mat. His tank keeps falling over and he keeps signing to me that's what's happening. Well he just signs tank I fill in the rest lol


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## annanouska

Does he use makaton? Apparently my area uses sign a long I've been o. The course. Tbh I find it too complicated for him there's various handshapes and orientations he really struggles with most signs. P,ushe loves mr tumble whom also uses makaton. Very annoying as sign a long is used in all slt, schools etc here

We can sign, stop, pig and rabbit...the most useful signs ever!!


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## sequeena

Yes it's makaton he's quite good. No sentences though just single words. He makes up a lot of signs too.


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## Reid

Hi ladies been reading the thread for a few weeks unsure to join or not but I see there are a few here that I can relate to.
So I'll tell you about us
My son's 3 1/2 he is a beautiful fun loving boy who has totally light up my life in ways I could never have imagined.
It was 1st brought to my attention at his 30 month check with hv that he didn't have as much words most other children his age so we were put on the waiting list for salt (this was in January) we were also sent to audiology for some hearing tests. The hearing test didn't flag up anything so audiology referred us to a children's developmental centre. So we had a specialist hv come and visit us at home she done an assessment that confirmed my son was delayed in speech and understanding was pretty much happy with everything else. We have seen the pedestrian to be honest this appointment left me a little disappointed I don't feel she spent much time on my son here but she did suggest he could be on the spectrum.
Fast forward to now he's been in nursery for a few months 2 hours 3 days a week as they are finding it difficult to deal with him. A few weeks ago they had me up there for a meeting with the manager hus key worker his salt came and an educational psychologist. They didn't really tell me anything I didn't already no but they suggested him going to another nursery which really took me by surprise. I don't really know much about the 2 nursery's other than they are more specialist for children with developmental delays and other disabilitys.
so these nursery's will send someone to observe lo in nursery and they then say if they think they are suited to offer him a place if so we have another of these meetings and we go and visit the nursery.
That's where we are right now waiting again lol after a 8 month wait on salt
sorry if I've banged on a bit therw lol :) xx


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## sequeena

Hi Lynne and welcome :) your LO sounds like mine except that Thomas is globally delayed. Good luck with nursery I bet it was a real shock when they said that. I'm sure they'll be able to help him a bit more in the specialist nursery mainstream nurseries aren't specifically trained for children with delays and such I don't think.


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## Reid

Thanx :) yeah he's not really getting much from nursery at the moment he dose enjoy it but he won't follow instructions like the others and there not really helping much with the potty though he's brilliant in the house will use the potty no problem for 1s and 2s because of his speech delay he doesn't say when he needs he just go's bit at nursery I have to put him in pull ups same as when we go out. They said themselves there just giving him things to keep him happy so he's not learning or growing from it. As far as I'm aware this nursery has had alot of money put into it I'm a little uneasy about it 1 it's been set on fire 3 times 2 it's not in the best of area 3 it's a lot further away from the 1 he's at now (I can see from my window). I guess i won't really no till I've been able to look round it and ask my questions ect. 
I remember you and Thomas from a good while back ;) xx


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## sequeena

It's worth having a look you don't have to make any decisions.

Are you getting any other help? I'd say Portage but I think they only get involved when there's 2+ areas of delay :(

I totally get the not following instructions thing :rofl: Thomas is very gentle and is happy to just get on with his own thing so when I've picked him up other kids will be listening to a story and he'll be playing with trains :haha:


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## Boo44

Hi Lynne - did nursery give you a reason why they couldn't deal with him? Your son sounds gorgeous and you sound like a fab mum x


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## Reid

sequeena said:


> It's worth having a look you don't have to make any decisions.
> 
> Are you getting any other help? I'd say Portage but I think they only get involved when there's 2+ areas of delay :(
> 
> I totally get the not following instructions thing :rofl: Thomas is very gentle and is happy to just get on with his own thing so when I've picked him up other kids will be listening to a story and he'll be playing with trains :haha:

We are getting book bug at home which is good and she's going into nursery to do a few sessions along side his key worker. Shes really seen the improvement in juniors behaviour and listening but she works 1 in 1 with him. only recently started salt she too is going to go into the nursery but she'll just be observing him. He won't see the pedestrian until January xx


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## Reid

Boo44 said:


> Hi Lynne - did nursery give you a reason why they couldn't deal with him? Your son sounds gorgeous and you sound like a fab mum x

Aww thanks it's not always easy as I'm sure you all no lol but I will always try my best where juniors concerned. 
He's actually ment to get 16 hours a week but we started off with 2 hours 3 times a week and never moved off that. They say he needs a smaller group or more 1 to 1 time and they can't offer that. He's very much on his own agenda they ll sit and have a group story or whatever and he won't sit for any great length of time if he doesn't want to :) xx


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## alibaba24

lynne1983 said:


> Boo44 said:
> 
> 
> Hi Lynne - did nursery give you a reason why they couldn't deal with him? Your son sounds gorgeous and you sound like a fab mum x
> 
> Aww thanks it's not always easy as I'm sure you all no lol but I will always try my best where juniors concerned.
> He's actually ment to get 16 hours a week but we started off with 2 hours 3 times a week and never moved off that. They say he needs a smaller group or more 1 to 1 time and they can't offer that. He's very much on his own agenda they ll sit and have a group story or whatever and he won't sit for any great length of time if he doesn't want to :) xxClick to expand...

Sounds like a certain little girl of mine :haha:


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## alibaba24

I think its important to remember stories etc are mind numbing for kids with lanuage . i know I wouldn't want someone reading me a book in French and I imagine that's how it is for my daughter who was significant delay in language . x


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## annanouska

:dohh: I always wondered why he didn't like books too much apart from pop up books or flaps and feely ones.... That must be why!!

I'd go and look at the other nursery to see how's feel but really I can't understand what the issue is with his current one? If he wants to wonder a bit is that a huge issue? My son is like nursery security he just patrols the windows! He tends to play for ages pouring water from one cup to another or sat in the sand pit. He was observed last week in nursery by the salt, OT and play therapist. They saw how he mostly does his own thing but how nursery encourage him to do short bursts as the group then go and have his own time etc.

Surely there is still a ratio of 1-4 or 1-6 depending on age. A small group of 4/6 Ish a d they could be in a quiet area doing an activity?

Also it is such a small time actually in the nursery maybe he needs longer to warm up? I know the first hour my son is just gazing out the window. Monday is worse as he's out the routine a bit. Cold they not do some now and then cards to encourage him? 

Sometimes specialist nursery is deff the way forwards but it seems a lot of them give up very quickly :shrug: xxx


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## Reid

I used story's as an example he doesn't like sitting doing the 1 thing for any length of time. 
I think that's how I was so shocked because he had made some massive improvements take the 1st week at nursery (he started in august) they were playing outdoors they have a lot of cool things out back including juniors favourite thing water so the 2nd day I went to drop him he went to go straight outside but it wasn't time for free play when they are able to go out and the doors were alarmed junior had a mega melt down cause he couldn't get outside. Over the weeks he's done amazingly well he knows now he can't always get out and the past week with the wind and rain they haven't been out at all and he's been fine but had his moments there words.
With the language barrier I've learnt that you just need to give him his own time to accept and learn things. The nursery work on 1 to 8. A lot of the family were really surprised about the suggestion of another nursery ones who have seen him in his nursery environment but it was actually the educational psychologist thay suggested it the day I went up for the meeting she went in and watched him for a little bit. 
Personally now I've had time to think about it and got over the shock I think another nursery could really be the best thing they have access to salt and alot of other resources. They work in smaller groups and he would be with children that were similar with speech delay it's also possible to get 1 to 1 time plus I think they would help engorge him to use the toilet when he's not at home. Where as I've got him from his current nursery and he's wet or pooed . 
It's just the nursery being that bit further away but that's my issue it's me that has to try and get used to that. Xx


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## alibaba24

annanouska said:


> :dohh: I always wondered why he didn't like books too much apart from pop up books or flaps and feely ones.... That must be why!!
> 
> I'd go and look at the other nursery to see how's feel but really I can't understand what the issue is with his current one? If he wants to wonder a bit is that a huge issue? My son is like nursery security he just patrols the windows! He tends to play for ages pouring water from one cup to another or sat in the sand pit. He was observed last week in nursery by the salt, OT and play therapist. They saw how he mostly does his own thing but how nursery encourage him to do short bursts as the group then go and have his own time etc.
> 
> Surely there is still a ratio of 1-4 or 1-6 depending on age. A small group of 4/6 Ish a d they could be in a quiet area doing an activity?
> 
> Also it is such a small time actually in the nursery maybe he needs longer to warm up? I know the first hour my son is just gazing out the window. Monday is worse as he's out the routine a bit. Cold they not do some now and then cards to encourage him?
> 
> Sometimes specialist nursery is deff the way forwards but it seems a lot of them give up very quickly :shrug: xxx

I'm a bit surprised at this too as my daughter was not potty trained when she started she was in pull ups the first week then pants and they helped take her to the toilet until she was independent with it. They have always been very understanding of my daughter who wanders off at storytime etc and although they are pushy to have her observed etc they have never suggested a different pre school to me x


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## sequeena

Wow rough day here T is hypersensitive to everything right now :(

But I got a letter from his disability hv and community nurse talking about continence products. We have an appointment at the end of November. I think they're going to give us free nappies :) I hope so at least they did say we had to wait until he's 4 last time I saw them.


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## Reid

sequeena said:


> Wow rough day here T is hypersensitive to everything right now :(
> 
> But I got a letter from his disability hv and community nurse talking about continence products. We have an appointment at the end of November. I think they're going to give us free nappies :) I hope so at least they did say we had to wait until he's 4 last time I saw them.

That would be great it would save you a fortune if you got them free. 
They days are always soo hard going hope he settles down soon xx


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## Thurinius

lynne1983 said:


> Thanx :) yeah he's not really getting much from nursery at the moment he dose enjoy it but he won't follow instructions like the others and there not really helping much with the potty though he's brilliant in the house will use the potty no problem for 1s and 2s because of his speech delay he doesn't say when he needs he just go's bit at nursery I have to put him in pull ups same as when we go out. They said themselves there just giving him things to keep him happy so he's not learning or growing from it. As far as I'm aware this nursery has had alot of money put into it I'm a little uneasy about it 1 it's been set on fire 3 times 2 it's not in the best of area 3 it's a lot further away from the 1 he's at now (I can see from my window). I guess i won't really no till I've been able to look round it and ask my questions ect.
> I remember you and Thomas from a good while back ;) xx

I'm in exactly the same situation except the nursery my son was in were absolutely horrid to me, describing my son as a health and safety hazard. So he's back at playgroup till we find him somewhere 
What the SENCO's in our borough have said to us is that though my son is bright and learns he needs one to one adult attention to try things and without that he will just wander about - not unhappily but they feel he wouldn't progress and catch up with the others. I can see this, with one to one help at playgroup he gets really into his arts and crafts etc.


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## sequeena

He calmed down by about 3pm thankfully. I've no idea what set him off :(


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## RachA

Hi Lynne-is there no say they can apply for funding to offer 1:1 support for him? 
With Esther, she started at the pre-school at 3years. By the time she'd been there for 4 months they had a good amount of 'proof' that she needed more support (they already knew she had issues but not how much if would affect her). It took them another few weeks to get the support into place. At the time if applying she just did 2 days of 3 hours each so they got funding for 6 hours a week for her. However once we upped her hours the preschool still gave her the 1:1 support for the whole time she was there. 
If the pre-school aren't willing to do the 1:1 then I would look else where. He really needs people that are trained properly to help him otherwise he won't get any benefit from going. 

Funny talking about reading with them-Esther loves books but isn't great when u read to her. However if my dad or OH's dad read to her then she loves it.


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## Reid

RachA said:


> Hi Lynne-is there no say they can apply for funding to offer 1:1 support for him?
> With Esther, she started at the pre-school at 3years. By the time she'd been there for 4 months they had a good amount of 'proof' that she needed more support (they already knew she had issues but not how much if would affect her). It took them another few weeks to get the support into place. At the time if applying she just did 2 days of 3 hours each so they got funding for 6 hours a week for her. However once we upped her hours the preschool still gave her the 1:1 support for the whole time she was there.
> If the pre-school aren't willing to do the 1:1 then I would look else where. He really needs people that are trained properly to help him otherwise he won't get any benefit from going.
> 
> Funny talking about reading with them-Esther loves books but isn't great when u read to her. However if my dad or OH's dad read to her then she loves it.

I asked about getting extra support at the nursery he's at when I was at that meeting they said it isn't possible as the can't get the funding for it. Xx


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## RachA

That's a shame. I'm assuming it's because it's a different council maybe, I don't know. 
It will definitely be beneficial for him to be in a small group though. Esther was technically 1:1 but there was another girl there with autism plus 2 others with minor speech issues so done days she was 1:1 and others 1:2 depending in who was in.


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## sequeena

See if you can find out about a charity that provides funding. In wales we have o gam I gam and when T was at nursery o gam I gam funded a 1:1 support worker for him.

Why am I up at 1.30am when Thomas has been asleep since 10pm??? Well I woke to what smelled like very strong urine. Wtf. Had a feel of T's nappy dry as a bone. Had a quick look using my phone as a light couldn't see anything. Smell bugging the hell out of me. I decided to change his nappy anyway and thank god I did he'd done a ninja poo. His bum was clean but the poo had gone to the side of the nappy so when I looked in I couldn't see it. He's all clean and still asleep but I'm still wide awake and need to be up at 6am.


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## annanouska

I feel very lucky with how good our nursery are being for us. He doesn't have 1 to 1 just yet but they spend a lot of time encouraging him and involving him. Tbh he only goes 2 days and I spend the other 5 with lots of therapy appointments and 1 to 1 at home so I don't mind too much. Consultant this morning woooo x


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## Boo44

Good luck hope it's useful! X


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## Reid

I'm not sure if it's because it's a community nursery so they only get part funding from the local council. I'd quite like to see this other nursery to see exactly what they can offer him and the wheels are in motion for them to come out and observe him not sure how long this kind of thing normally takes but after they've came and seen him they'll call a meeting between. Us all potential nursery current nursery educational psychologist salt then after the meeting I can go and visit the nursery xx


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## annanouska

:wacko:consultant didn't quite go as planned. MRI shows unexplained white matter on brain. This could be quite a normal thing or it may be something quite serious. Got to see another specialist over it. Se feels he has 2.5 of the triad criteria for autism so he may not get that diagnosis :dohh: his epilepsy is well controlled so happy with that part, they may do genetics on him may not. Said ATM he sits in several diff boxes and is a bit complex. It's a pain as its hard accessing all e right helps. He has his team review December so I may know mor then xxx


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## sequeena

:hugs: annanoushka :( I hope it turns out to be nothing serious.

As for everything else - ugh. I hate it when they say that it's so shit :(


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## annanouska

Is funny as I thought of u and t with the fits so much but not enough kind of thing!! I hope its ok a few ppl on his epilepsy forum have same thing so will it and see, think its December time we shild go x


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## sequeena

That would be a massive help thank you. He's had another few 'episodes' today. We were at the eye clinic and the eye nurse there saw him doing it.

I can't get the damn thing on video though as it's so short!!! But his key worker, portage worker, various family members and now eye doctor has seen it so I'm not crazy at least :haha:


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## Boo44

Annanouska what sort of thing can cause abnormal white matter? Sounds confusing.. Also what are the triad of criteria for autism? Sorry the meeting didn't go quite as planned


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## Reid

Sounds like you've had a tough day hun really hope that it isn't anything serious.
Had a really upsetting day yesterday for complete different reasons. I went to pick j up from nursery and the manager came over to talk to me blah blah chit chat then she said that they think it's best j doesn't go to nursery on Friday while the Halloween party is on they think it will be to much for him and sorry to be frank but utter shite I think it's so it's less hassle for them. I used to take him to toddlers he had a wee Halloween party there was fine.
I'll be at work on Friday but I've made him up a wee goodie pumpkin and daddies taking him to his gran and papas there having a wee party there for him got his wee costume in all.
Very disappointed in the nursery though and still no work from the other potential nursery xx


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## annanouska

Complex genetic and metabolic disorders, bleeds to brain, blockages, areas of brain damage, scar tissue, little bits that didn't quite develop right but are harmless, brain infections and diseases and general Old age or one of them random things :shrug: also said sometimes they never find out

She didn't go into too much about the autism on this appointment, they look at social emotional, imagination and language , communication. He fits a lot but not quite all she currently described it as a typical autism but the concern is there's a lot going on with the epilepsy the scan etc to know fully what's really happening so its a long road.

Sequeena what were t's episodes like. Videoing anything is a nightmare, by time I've found my phone and set it up whatever I needed to film has stopped. I did have a diary but tbh I'm exhausted just keeping up with everytuj g its last on my mind x


----------



## sequeena

He just stops like he's been paused. Sometimes his eye lashes flutter. A few times he's gone rigid and once it happened whilst he was on his hands and knees and he fell, but that was due to the position he was in. Literally lasts 10-15 seconds. By the time we've realised it is an episode and not him just ignoring us I don't have enough time to film it. He snaps out of it and just carries on as normal afterwards I don't think he knows it's happening.


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## Boo44

Wow it all sounds very complicated which is hard when as a mummy you just want answers and the right help for your baby x


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## RachA

Sorry about your appointment. 
How soon will it be until you see someone else about the MRI result? Hope they don't leave you waiting too long.


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## annanouska

:flower: December time I think.

He's very happy and being boisterous etc so I'm taki g that as a good thing. 

Sounds very much like seizure activity sequeena. A typical absence tends to be very brief tho Marcus did have many 10-15 seconds and a Couple over a few minutes. It is possible he is having a different type of seizure as well as absences. He won't be aware of what is happening or recall after. Just keep a diary instead if its easier there are some free apps about too seizure log type things. Also feel free to join us on epilepsy in babies toddlers and children on FB they are absolutely amazing. I've had loads of advice and help on there. 

Do you have the MRI and EEG booked yet? They shouldn't be leaving him like this. I know T is complex like M but with the right medication it may make some huge differences for him. 

Random giggle for u, he just chucked his bits of crumpet on the floor. I was about to tell him off but he runs off to get the broom! He's doi g this a lot ATM he spills thighs just to wipe them up :blush:


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## Peanut78

Anna, I can't find your original post on the MRI, so this may not be relevant... My T was found to have "delayed myelination" on a brain MRI when he was 2. It basically meant that parts of his brain hadn't myelinated the way they should at that age. This explains his motor planning difficulties as messages in the brain are not transmitted from one part to the other as effectively as they should be (imagine the plastic around a wire which ensures the electronic pulses stay inside and on course). 

He was also screened for a wide variety of "demyelinating" conditions which is where myelination is degenerative (including metabolic screens). I was told in this scenario's you would be seeing regression not progression in development. 

Lynne, that sucks about the Halloween party - I totally agree that is for their benefit not him :growlmad:

Sequeena, I hope you get to the bottom of the spacing out - whatever it may be :hugs:


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## annanouska

:hugs: thanks peanut. He basically has "unexplained white matter" that's all I know so far like white dots showing on scan. His whole journey started about 13/14 months tho there were signs before then ( a lot of them really) but he regressed massively then, lost all his speech , play regressed, social regression etc. that's when they went down the autism route the whole epilepsy etc has come as a tangent! He has improved hugely now tho, he's not the same as other x2 year olds but he is appears less different to the untrained observer.

Since we went on medication tho he has developed 100 times more than he ever had. He's still behind but every day he does something a little bit new or better.

Your reply means a lot, may not be the same thing but gives hope that others have been given such scary suggestions too and got through it .

Just had a party at special needs play group. He had great fun, didn't join in, wouldn't eat with them ( faced the wall in corner eating like some sort of Oliver Twist homage!) but he had a great dance and giggle and only a minor me.tdowm at the end xxx


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## Peanut78

annanouska said:


> :hugs: thanks peanut. He basically has "unexplained white matter" that's all I know so far like white dots showing on scan. His whole journey started about 13/14 months tho there were signs before then ( a lot of them really) but he regressed massively then, lost all his speech , play regressed, social regression etc. that's when they went down the autism route the whole epilepsy etc has come as a tangent! He has improved hugely now tho, he's not the same as other x2 year olds but he is appears less different to the untrained observer.
> 
> Since we went on medication tho he has developed 100 times more than he ever had. He's still behind but every day he does something a little bit new or better.
> 
> Your reply means a lot, may not be the same thing but gives hope that others have been given such scary suggestions too and got through it .
> 
> Just had a party at special needs play group. He had great fun, didn't join in, wouldn't eat with them ( faced the wall in corner eating like some sort of Oliver Twist homage!) but he had a great dance and giggle and only a minor me.tdowm at the end xxx

Thanks Anna - these scary situations and trials and tribulations are quite something - huh :wacko::hugs:

I mentioned the myelination as this is often also referred to as the "white matter" in the brain (the other is the "grey matter"). 

It's so fantastic to ear how well your son is getting on :thumbup: We are going to a special needs play group next week as well and I'm excited :happydance:


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## sequeena

Love this :)

https://sensoryprocessing.yolasite.com/spd-is--spd-is-not.php

No new news on the EEG front. Not surprising though. Hopefully it won't be long.

We want to get to a SEN playgroup too next week, I can't wait!


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## Thurinius

My son had his first one to one speech therapy this week and it was a real success. We were worried how the guy would get his attention, generally when strangers come to the house he totally ignores them. But we needn't worried as he brought a box of tricks with him including a drum, bubbles and an iPad. He was just assessing him this visit but what came out of various matching games and other stuff is that my ds comprehension is very good, he understands and can follow the rules of a game for instance. So the therapist is going to work on his 'expression' and presumably getting him to string more words together.
Later this month we are looking at a new nursery and meeting their special needs coordinator to discuss, very kindly the manager of ds's playgroup is coming along to to make sure we ask the right questions and we are all sure he will get the one to one help he needs.
So all feeling a bit more positive now. :)


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## Reid

Thurinius said:


> My son had his first one to one speech therapy this week and it was a real success. We were worried how the guy would get his attention, generally when strangers come to the house he totally ignores them. But we needn't worried as he brought a box of tricks with him including a drum, bubbles and an iPad. He was just assessing him this visit but what came out of various matching games and other stuff is that my ds comprehension is very good, he understands and can follow the rules of a game for instance. So the therapist is going to work on his 'expression' and presumably getting him to string more words together.
> Later this month we are looking at a new nursery and meeting their special needs coordinator to discuss, very kindly the manager of ds's playgroup is coming along to to make sure we ask the right questions and we are all sure he will get the one to one help he needs.
> So all feeling a bit more positive now. :)

That's brilliant well done to him you must be mega proud xx


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## Thurinius

lynne1983 said:


> That's brilliant well done to him you must be mega proud xx

I am very happy. His issues seem to be in a group setting. One to one he is quite communicative and expressive. But in a group he needs adult attention to get him to involve himself in anything. It doesn't naturally occur to him to try things but once he's seen an adult do something he'll join in. Also his play is very far behind his peers. He doesn't do much imaginative play, none at all outside the home. He seems to just enjoy taking things in and out of play kitchens etc.


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## annanouska

:rofl: he sounds soooo much like my son. The ADOS wound me up as it was him and the slt woman doing the assessment, that is a strength for him! He too is worse in groups he needs an adult to help keep him e gaged. Funny as we had a chat about this yesterday and it is apparently because as an adult I know what he wants or how to engage him, a child doesn't,a child won't sit for ages lining cars up with him etc that's apparently one of the reasons he struggles with child interaction they don't "get" him.

The appointment sound s really positive. All great signs :thumbup:. My son is behind in play but much improved. He too likes to take things in and out or pour water for ages x


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## sequeena

Fab appointment Thurinius. I love it when things turn out better than expected :)

Went shopping with T by myself today. I did not expect the shopping centre to be so busy and Thomas lost it. He kept head butting walls or laying on the floor and putting his head in his hands so I had to strap him in his wheelchair. Not the best shopping experience I've ever had to be honest.


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## Thurinius

Annanouska exactly, my son thrives in one to one. So much so that the therapist was doubting his autism since he ws really good at this one iPad game where he had to find treasure. The therapist said autistic kids typically think the treasure stays in the same place each game, that things are static whereas my son was actively searching for it.
Had to dash the hopes of my oh who thought maybe he's not got asd after all by pointing out it's when he's with other kids he's age that it's really apparent to all the other health providers etc.


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## RachA

Children with issues like ours find it easier in a 1:1 setting. Esther always takes a back seat when with her peers. She isn't shy at all which is the general assumption of people when they see her like this. 
As others said it's partly because an adults knows what they want and gets them so it's much easier for the child to respond. What you do find is that as children get older they too can preempt what the other child wants. Esther is doing well at school because her peers are now old enough to play with her rather than along side and they ignore the fact she isn't talking like them.


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## annanouska

He may not have autism or he may do. My slt said a lot of very complex language disorders can cause autistic like traits in a child. The main thing Is to get the right support and go from there. Some days I feel Marcus is deff asd then other days I sit and thig. Well maybe he isn't. Right now I'm honestly not bothered I just ant to know what's going on with this scan issue :haha:

Halloween was hilarious i should have videod it ...he coped with the trick or treaters and become super regiments to the point the door went he ran to it going grrrrr open door, gave each child a sweet ( they couldn't pick their own) then practically slammed door In face put the pot back ad sat own. This went on the whole night. He was really happy so I left him to it, think it bewildered the kids a bit but I don't care meant he was involved :haha:

He had a meltdown at the end I think it got too much, he threw a mars bar at this trick or treated lay on floor head in hands crying. I think I felt more sorry for the poor trick or treater. I just muttered oh he's tired! He was in fact as went to bed lol x


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## Boo44

Ohh that's gorgeous I just got a mental image of M doing that with the trick or treaters - classic!!


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## nicki01

Anna that's brilliant! I love that he got involved.

We have been having a busy time!
Lots of appointments, then a sickness bug that Charlie and her dad got, Charlie was a trooper! She was sick and got on with it, still bouncing around like mad, my other half on the other hand, was sick all over my hallway! I'm still trying to get the stains out a week later!
Now tori has Scarlett fever, she suffered for 8 days as the doc misdiagnosed her having an allergic reaction, eventually needing an emergency doc we got some antibiotics so she is on the mend.
Now I have been potty training Charlie for 2 days (we have tried so many times before with no success) she has been doing great, no accidents but only if she is naked from the waist down. If I put trousers on her she wets herself. 
Is this the first steps?? I've not done this before?!!


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## Reid

nicki01 said:


> Anna that's brilliant! I love that he got involved.
> 
> We have been having a busy time!
> Lots of appointments, then a sickness bug that Charlie and her dad got, Charlie was a trooper! She was sick and got on with it, still bouncing around like mad, my other half on the other hand, was sick all over my hallway! I'm still trying to get the stains out a week later!
> Now tori has Scarlett fever, she suffered for 8 days as the doc misdiagnosed her having an allergic reaction, eventually needing an emergency doc we got some antibiotics so she is on the mend.
> Now I have been potty training Charlie for 2 days (we have tried so many times before with no success) she has been doing great, no accidents but only if she is naked from the waist down. If I put trousers on her she wets herself.
> Is this the first steps?? I've not done this before?!!

Definitely the 1st steps that's how my son started off I guess the pants and pull ups feel the same just took him a wee while to get the hang of it he can wear pants fine now. Xx


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## DHime

Hope you ladies are doing well. Sorry have been out. You seem to all be just as busy. We had a fun staycation at the local picu when my son caught a cold. Aft that he was diagnosed with asthma. This week, it was autism spectrum. 
We have been swamped. How is everyone today?


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## sequeena

Oh ladies I've had such a tough day :(

This morning I started sleep clinic. 6 other parents were there. All the kids have autism apart from Thomas. The disability HV and nurse went through sleep patterns, importance of sleep, sleep routines etc. All good. None of the other children have SPD or sensory issues to the degree T has (his meltdowns, self harm, constant need to touch me etc). The HV and nurse had no idea how to combat his SPD?? They will speak to OT but now I'm trying to implement this new routine when it really doesn't work for T. I'm only doing it as I have to (if it doesn't work he can have melatonin). Thomas has spent the day screaming at me, dropping to the floor, head butting, throwing things at me etc he's been a nightmare and a real embarrassment when we're out. I know he doesn't understand and it's not his fault but I'm so frustrated!!!!

This afternoon I had the LEA officer here. They've gone to panel and have decided Thomas should be assessed for a statement so she gave me all the paperwork and it's just so much to take in.

I've not slept and I've not eaten so I've ordered a takeaway. I feel terrible but I've cooked every night this week so far. Thomas won't eat - part of his new routine is to fecking eat before bed!!!! :cry: I feel like such a failure already


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## Reid

sequeena said:


> Oh ladies I've had such a tough day :(
> 
> This morning I started sleep clinic. 6 other parents were there. All the kids have autism apart from Thomas. The disability HV and nurse went through sleep patterns, importance of sleep, sleep routines etc. All good. None of the other children have SPD or sensory issues to the degree T has (his meltdowns, self harm, constant need to touch me etc). The HV and nurse had no idea how to combat his SPD?? They will speak to OT but now I'm trying to implement this new routine when it really doesn't work for T. I'm only doing it as I have to (if it doesn't work he can have melatonin). Thomas has spent the day screaming at me, dropping to the floor, head butting, throwing things at me etc he's been a nightmare and a real embarrassment when we're out. I know he doesn't understand and it's not his fault but I'm so frustrated!!!!
> 
> This afternoon I had the LEA officer here. They've gone to panel and have decided Thomas should be assessed for a statement so she gave me all the paperwork and it's just so much to take in.
> 
> I've not slept and I've not eaten so I've ordered a takeaway. I feel terrible but I've cooked every night this week so far. Thomas won't eat - part of his new routine is to fecking eat before bed!!!! :cry: I feel like such a failure already

Aww hun you really have had a day of it. Your not a failure at all I've read a lot of your posts on Thomas and you do a bloody fantastic job as his mother he's very lucky to have you. I no its easy for me to say but don't stress with the new routine give it time tomorrow's a new day and you can try again 
I think your take away is more than deserved I hope you can get some time to sit and enjoy it
Big hugs to you and Thomas to xxx


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## Thurinius

sequeena said:


> Oh ladies I've had such a tough day :(
> 
> This morning I started sleep clinic. 6 other parents were there. All the kids have autism apart from Thomas. The disability HV and nurse went through sleep patterns, importance of sleep, sleep routines etc. All good. None of the other children have SPD or sensory issues to the degree T has (his meltdowns, self harm, constant need to touch me etc). The HV and nurse had no idea how to combat his SPD?? They will speak to OT but now I'm trying to implement this new routine when it really doesn't work for T. I'm only doing it as I have to (if it doesn't work he can have melatonin). Thomas has spent the day screaming at me, dropping to the floor, head butting, throwing things at me etc he's been a nightmare and a real embarrassment when we're out. I know he doesn't understand and it's not his fault but I'm so frustrated!!!!
> 
> This afternoon I had the LEA officer here. They've gone to panel and have decided Thomas should be assessed for a statement so she gave me all the paperwork and it's just so much to take in.
> 
> I've not slept and I've not eaten so I've ordered a takeaway. I feel terrible but I've cooked every night this week so far. Thomas won't eat - part of his new routine is to fecking eat before bed!!!! :cry: I feel like such a failure already


Big hugs to you. Hope you enjoyed your well deserved takeaway. And in no way are you a failure


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## annanouska

:hugs: I've had way too many take always recently as I can't juggle him and appointments work house and everything. We are on go,Ida nw tow weeks ill get to it after.

The sleep clinic sounds a pain even kids with ASD are all different so its hard in a group setting. Stick with it and just play the game for ur melatonin, only thing one at our group gets to sleep ok on melatonin but can't stay asleep. I really think as part of this sleep stuff u need to chase up your eegs and mris. I know Thomas sleeps far worse than Marcus ever did but if u could have some relief like we have now he's on his tegretol it would help massively. I know u isn't even know if it is epilepsy but he's a little boy who can't switch off and wind down its worth running them jut to see if there's any brain patters causing or aggravating. Is rubbish how lo g they are taking

Had a letter today the new specialist has looked at the white matter changes on MRI also is not sure so requested loads of random bloods and urine and review in December. Can't decide if them not begin sure is a good or bad thing :dohh:

W have team review in December, I think he's not going to get his ASD diagnosis the epilepsy meds have helped so much but I've heard they do have an impact even in non epilepsy people so going to raise that.

The reviews...do u have to take the kiddies? I'd say not but can't reach secretary to ask. There's going to be lots of ppl there he won't cope and then I won't be able to ask stuff :shrug:


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## sequeena

Thanks everyone. We had a bad night but that's nothing new. I wasn't expecting an overnight miracle I'm just stressed is all. I don't think even the HV and nurse expects massive progress.

Sean has taken T out for a haircut and no doubt has popped into SIL and BIL's. I'm stressing now as I wanted to start the bedtime routine by now but they're not back. I feel like I'm the only one doing this he's not even read the sleep stuff I brought home yesterday :(

annanouska I have to go to the GP on Monday to sort out a referral for the EEG since the Paed won't be doing it now.

Poor Marcus more bloods and such it's just not fair is it :(

As for the review if you can leave him with someone I would. I really doubt they will want to specifically see him as it'll be lots of professionals talking about him and what steps they want to take. And as you say he won't cope it won't be fair on him :hugs:


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## sequeena

Thomas still won't bloody eat either I can only hope he'll eat food when he gets home (whenever that is!!!!)


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## annanouska

He's in nursery I'm having to take holiday to go so I'm leaving him there!

Don't stress about tonight, have a chat with OH and explain he needs to read the sleep stuff and start again together tomorrow if need be.

Did they make Thomas a little book like Marcus has? It has all pictured symbols as visual aids forth routine, it may help it may not.

As for the eating is it just the evening meal? If he eats enough during the day maybe just relax a little, could he have formula once a day or pediasure if his diet is terrible all the time? I think unsaid u have seen a dietician?

Whatever u do don't give him a fruit cooler from costa...I did and he's gone hyper beyond all belief.

Hope u get the EEG sorted that's terrible off paed.


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## sequeena

No the paperwork stuff was just for parents. Nothing for the kids.

Eating wise he will eat breakfast but the rest of the day is really hit and miss. I try not to stress but he will inevitably want something at like 11pm which really isn't suitable. Of course I feed him but he has to eat in the day rather than in the night.

Oh dear! No Thomas has never had anything like that the most exciting it gets for him is a fruit shoot :haha:


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## sequeena

I just rang Sean they won't be home until 7pm :dohh:


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## annanouska

He usually gets steamed milk there but it was so loud we too out as he wold have a breakdown and me too prob. I'd try a little book Marcus is basic with pec like pictures of the routine and its jut laminated and clipped together but its nice and works, shows little things like 5 mins playing diggers then light out. He doesn't get time either but the order helps.

I'm guessing you have tried not feeding him of a night or reducing the amou t to try and re set his clock. Poor Thomas he sounds all of a jumble. I've sent Marcus to bed no dinner often but he doesn't wake for it in the night. Is hard when u have an additional needs child who doesn't even fit the mould for different isn't it :rofl: I get frustrated that Marcus doesn't quite fit in boxes as it makes it so wooly explaining x


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## sequeena

I've never thought to ask for milk for Thomas in costa - I bet he'd love the experience!

Yeah he really has no concept of routines and it is so hard to get him into one because he needs things when he needs them. I have sent him to bed without food but the resulting meltdown has left both me and him with injuries so I really can't push these things. I feel people think I'm giving into him and he knows what he's doing but there's no way he would hurt himself the way he does if he was trying it on :(

I so agree SEN kids do not fit into boxes. The HV and nurse said when it comes to sleep put their diagnosis and SEN aside treat them like normal children - are they for real?


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## annanouska

:headspin: errr....right ok. That's the most stupid thing vie heard in a while. It's actually so ridiculous its funny :dohh:if you could treat them the same u wouldn't all be wasting a day at a sleep clinic. 

Ultimately u know your son best, how he reads on paper is very different to the reality. It must be so distressing for him as he must be exhausted and all jumbled up,body clock wise its non wonder he melts down :hugs: i know its then just as hard to try and watch and fix things :flower:

U can ask for cold milk, steamed milk or a plain baby chino which isa bit of steamed milk and lots of frothy stuff on top. Marcus loves them especially with marshmallows too....he really has a marshmallow thing!

Hope everyone's well. X


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## Reid

OMG the next person that says to me 
oh once he starts talking you'll wish he'd shut up
I will actually punch 
why do people say such stupid things 
My son's 3 1/2 with speech delay


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## Thurinius

lynne1983 said:


> OMG the next person that says to me
> oh once he starts talking you'll wish he'd shut up
> I will actually punch
> why do people say such stupid things
> My son's 3 1/2 with speech delay

Oh yes I know that one!


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## mummy3

Can I join back in? Been so so long and I think I fit in here!

Quick run down.

Freja: 10, ADD, EDS1
Ruaridh: 6,mod/sev ASD, EDS1
Anja: 5, EDS1
Eilidh: 3, mod/sev ASD, GDD, EDS1, Complex partial epilepsy
Alasdhair: 16m,GDD, Diplegic CP, EDS1, Eosinophilic esophagitis

Phew!!! I think I remembered all that:wacko:


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## mummy3

Ooh that saying really gets to me too! I don't know what goes through peoples heads sometimes, esp when they know there's a speech delay!! :dohh:


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## mummy3

I see a few posts about EEGs and MRIs.

We are doing sleep deprived EEGs for now but I really want the longer 24 hour one done. The anti seizure meds are having a really good effect:thumbup: 

My little guy is going for his MRI on the 21st finally, its under general and he's supposed to be fasting but its at 12pm:dohh: We know he has some fluid around his brain, and head is on the 98%+ (height 0.78 and weight 60). My 3 year old had an MRI a couple years ago and the main finding then was delayed myelination, she's due a repeat soon.


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## Reid

mummy3 said:


> Can I join back in? Been so so long and I think I fit in here!
> 
> Quick run down.
> 
> Freja: 10, ADD, EDS1
> Ruaridh: 6,mod/sev ASD, EDS1
> Anja: 5, EDS1
> Eilidh: 3, mod/sev ASD, GDD, EDS1, Complex partial epilepsy
> Alasdhair: 16m,GDD, Diplegic CP, EDS1, Eosinophilic esophagitis
> 
> Phew!!! I think I remembered all that:wacko:

I'm kinda new on here but welcome back xx


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## nicki01

Charlie is coming up 4 so I've called the health visitor to ask for the incontenence service to be contacted for our help with nappies. 
She said she will bring the along paediatric nurse to our appointment next week to start the assessment but she can't promise it will happen quickly! 
Does anyone know how this works and how long it takes?


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## RachA

nicki01 said:


> Charlie is coming up 4 so I've called the health visitor to ask for the incontenence service to be contacted for our help with nappies.
> She said she will bring the along paediatric nurse to our appointment next week to start the assessment but she can't promise it will happen quickly!
> Does anyone know how this works and how long it takes?

Nicki-I've been looking to find out info about this for Esther. It seems that most places say it can take up to about 3 months. 
I really can't decide what to do about it for Esther. She's at school now so I don't even know if it's the HV that will be the first contact. Plus she's only in them at night although most nights she has to be changed. She also still needs swim nappies as she always poos in the pool!! 


We have been awarded DLA for Esther-the care part. It was a pleasant surprise really. 
She's getting on ok at school-we have parents evening next week which should be fun. I'm amazed that she's actually picked up 3 letters that she know recognises and she's nearly there with writing the first letter of her name :)


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## nicki01

Thanks rach, maybe worth calling the health visitor and asking, even if its just for night times it all helps. A friend of mine has a 12 year old with global delay and she gets her nappies for night times. 
Good news about the DLA. We only get the care part too. Will need to reapply for mobility when Charlie is 5 they said. 

I'm so pleased she is doing well at school, well done Esther , I viewed my first mainstream yesterday and really liked what I seen! The SENCO I spoke with answered all my questions how I had hoped too, I'm pretty certain we will try mainstream first. 
I'm having a battle trying toget her an OT, they said she can't see one till I've done the parenting through the senses course which is fine however it started today and I can't attend as its afternoons and I can't get childcare. The next one is a morning course which is fab but its January and for 4 weeks so no OT till at least feb and considering I've asked for this since June I'm pretty annoyed with the time scale! I'm hoping its not a referal for OT as then it will be longer than feb!


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## mummy3

You can get help providing nappies in the UK? That's really cool, very helpful!

Why is there so many loops for services like OT? Is there an early intervention programme? Under 3 mine get EI at home and then after 3 its in the school with extra services at home set up through regional center, a state run disability center. The little ones go for an assessment, takes a couple hours and gives a run down of where they are in different areas, then you get services based on that. My 16m old gets OT,PT, ST one hour each a week and then 2 hours with an early intervention teacher. 

What are the schools like? Are there special ed programmes or mixed peer programmes? 

Curious on the difference between places, we are San Diego. Services are on the ball, health insurance for medical stuff is more hit and miss, we have to pay over $1000 each month out of pocket for my little guys elemental diet. Whereas I think that would be covered in the UK.


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## sequeena

Thomas' sleep the last few days have been horrendous. Sigh :( I'm sticking to the routine though.

Waiting lists on the NHS vary depending on where you live. Thomas waited a year for OT then had 6 sessions of it. They do it fast as there are so many children to see but we can go back whenever. We've been waiting since September for a specialist OT who will work on Thomas' hand. The only 'therapy' he has every week is Portage. Portage is a home-visiting educational service for pre-school children with additional support needs and their families.

Your disability centre sounds like our children's centre (not the same in every area). Almost all of Thomas' doctors/therapists etc are based there. We're there once every 2 weeks at least, usually more though. We're there tomorrow for sleep clinic (3 week clinic, been waiting for that for a year too).

Yes once kids turn 4 they're eligible for nappies if they have additional needs. Thomas has an appointment on the 28th about it even though he's not 4 yet so that will be interesting. I think you are given a certain amount of nappies every month.

Every school in the UK is allocated money to provide for additional needs students. Schools are broken into mainstream, mainstream with an SEN unit, or SEN. A lot of children with additional needs are assessed for a statement (now called an Educational Health Care Plan (EHC plan). This takes 26 weeks to complete and it's not guaranteed that a child will get a statement (We're 6 weeks into it).

Yes I believe all specialist formulas are covered by the NHS.


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## sequeena

Can I share a photo of my little guy? He's in the paper today


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## nicki01

They are brilliant pics 

Yes we get portage every week, been having that for 6 weeks now. We also go through the childrens centre for everything but we only go there once every 6 months for an appointment with the pediatrician and then we get a weeks worth of speech and language but again that only a week every 6 months. 
I'm getting fed up of fighting for the OT. I've got home to a leaflet of sensory diet activities for us to do whilst we wait! Not really much help to be honest as I'm not 100% sure on what is sensory for Charlie as we have never seen an OT. Its only what I think may be sensory so without a professional telling me if she is over sensative or under sensitive in what parts ive got concerns about I'm still a bit lost! Hope that makes sense!

We are also a about 3 weeks into our ehcp. I've got to do my part this week which I'm not looking forward to but nursery are going to give me a hand with it. 

I'm fed up of having to find out info myself and go on courses which I again have to find myself as noone tells me anything! 
Charlie is acting up again, yesterday at nursery she got into trouble as she put a cushion on someone's head and was shouting I'm going to hurt you, when she was told to stop she threw the cushion at her teacher and then spat in her face! :-/
Its her new thing, spitting in your face and bitting. We are having a power battle, she refuses to do anything you tell her, brush teeth, get dressed, get in the car, go to bed, I'm so tired.


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## nicki01

Adding to that, we are very very lucky to have the nhs. We don't have to pay for any of Charlie's therapy or paediatrician appts etc. and the help with nappies will help no end once I finally get them! 
Everything just happens very slowly!


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## mummy3

So very mixed really help wise. Is the statement the same as an IEP? My post 3 year old kids have the IEP and the little guy has a family plan.

Those are some really long waits and it sounds like you have to go through an awful lot to get the therapies.

Help with nappies would be a huge blessing, same with knowing they can get the formula!

Thomas looks so cute in the pics!!!


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## RachA

No the statement is different. The statement tells the childcare setting (preschool or school) what help the child needs on a 1:1 basis. Esther has one and it covers the fact that she has to have daily speech therapy. It also gives guidelines that have to be followed like: making sure she understands what the teacher has said; help with toileting; help with eating; encouraging the use of group games that don't need words so she can play with her peers. 
Because of the different things she needs help/encouragement with she needs someone other than the teacher with her all day during school hours to make sure she is ok. 
She also has an IEP which outlines 3 things we are working on with her and what is being done to help her achieve this.


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## Reid

Aww fab pics love his wee hat xx


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## mummy3

RachA, the IEP here covers all the needs for say school, including medical, physical, aid etc as well as the goals. Main thing is getting one, after that its easier to make sure the needs are met. Its interesting the different ways things are done. 

I noticed sleep clinic, whats involved there? 

My son did his school play today, his aid has done us proud, he joined in, did his lines and managed to stay with the other kids for a full 30 mins:happydance: Complete turnaround from last years!
 



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## Thurinius

Good week for us. I have spotted lots of imaginative play, for example he is using a plastic ring as a driving wheel, putting an orange in the middle to be the horn and has just told me it's a tractor.
Plus I brought a toy bus with little figures and he's named them all, not terribly imaginatively admittedly, mummy, daddy, nana.
Also keeps pushing the bus off the table and going "oh dear no seaside" so I guess they've all been on a trio to the seaside!
Second session with speech therapist, again he reckons my sons comprehension is very good and he scores particularly well in maths (not sure where he gets that from!) 
His issue us that he only says the first syllable of words, so he's going to work on that


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## RachA

I wanted to post a picture but whenever I try from my phone it's always too large :( 
But anyway I just wanted to put a picture of the letter 'E'. Esther has been working really hard at school and can now write a reasonable 'E'. I'm so proud of her :)
And it feels really stupid to say that I'm proud of her being able to write 1 letter and to recognise 4 letters when all the other children in her class are doing so much more.


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## annanouska

Rach that's blooming fantastic, go E! Is such a massive achievement to our children and considering how worried u were its a great start :flower:

Thurinius that's great going...my son isn't quite there yet but he has decided he likes a teddy recently :haha:

Yellow to everyone new and rejoining. W were away this week and will be back away next week, hope he copes again.

We are going for blood tests again Then he sees this different consultant in January about the 'unexplained white matter' on MRI, it was meant to be December so I'm hoping its not too serious as we are postponed.

His speech slowly improves but its very much learnt phrases still ' where's daddy gone' etc tho he is identify and naming a few door, keys, shoes etc. still can not say mummy.

One th g I'm noticing he's starting to count :wacko: he sits and does one to ten sometimes missing a few, some are very unclear but I don't think he gets what he's doing its like he's just reciting what they go over all day I. Nursery x tam review in a few weeks tho x


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## Thurinius

Really impressive racha. The joy we parents get out of the smallest steps, because we know how much harder it is for our lo's

Does anyone have other non-educational needs children? I have a younger son who is 18 months now. I am finding it quite hard when he does something new, eg yesterday we were sitting on the floor and he grabbed my hands and went 'row, row' for row, row,the boat. It just made me feel sad because I used to sing so many songs to my eldest and he never, ever joined in. And seeing my younger son developing it's highlighting all the things my elder son should have done and didn't. And then I feel bad because I should,be really excited for my younger sons achievements.


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## annanouska

I do t have any other children but I get what u mean I feel like that when I see younger children out and about. Be proud of both your children, your your youngest is hitting fantastic milestones and celebrate them. Sought your eldest didn't do look how well he is doing now. I know its not the same, from 6 mo until almost 2.5 Marcus was like a feral child who just creamed hit and bit made no interaction, never anted row row etc, now and then he grabs my hands now to do row row, he laughs at peek a boo in a cafe etc. ok it's a bit late but he's doing it (on his terms) now. I wish I'd not spent his infant time trying to force him to enjoy baby massage baby sensory, getting so frustrated at him constantly being different. He's my little Sheldon cooper (big bang) and Sherlock...both very cool and quirky x


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## Feathers

Hi ladies hope everyone and their LOs are well!
That's great news on Thomas's ehcp sequeena! Hopefully it won't be too tricky for you to get the statement!

I definitely get what you mean with younger kids Thurinius, DS is 11 months and he is right on track. It's lovely to see (we had first proper words last week - not just mama/dada) but it does make me a little sad. It makes me all the prouder of DD because she has to work all the harder to get where she is though :) She's a definite fighter!

OUr big news is we have genetics results on Tuesday! I'm really nervous and probably will be upset after for a while but it's a good thing too. DD has blossomed with talking in the last few weeks! She is trying to say so many words, it's fantastic! Portage finishes for us at xmas as they only run until the free 15 hour funding here, but nursery has a new (better) SENCO who is running talk group with her, has improved her IEP and is applying for some 1:1 hours for her to replace portage. Portage will be in and out of nursery for a while too.
Also had some physio development: they noticed her ankle is a little twisted as well as her being hypermobile so she should be going to see another dept about inserts/special shoes to help her walk. She's doing so well with her dance classes though, in a show in a couple of weeks :) They provide a 1:1 support for her at her ballet/tap group so we're really lucky :)


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## Reid

We have some good news to we have quite a few new words 
Baby boy which is what I call him sometimes
Animals along with there sounds 
Duck sheep cow and donkey 
Super proud
I have his salt coming to the house on Monday to talk about her nursery visit xx


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## Thurinius

annanouska said:


> I He's my little Sheldon cooper (big bang) and Sherlock...both very cool and quirky x

Ha! Exactly my fantasy. My son becomes a web developer or programmer, so he doesn't need to interact if he doesn't want to. But he's really popular at work coz he's so good at his job.
Oh and he has some swanky pad in London overlooking tower bridge that his poor of mum can come and stay at.


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## mummy3

Sheldon Cooper :rofl: That's a running joke here too!! Lots of little engineers on the way! My 6 year old is going to this 6 week camp, learning coding and some other computer stuff that goes over my head, 2 hours every sunday and he's totally focused there. Its mine craft themed, which is his go to obsession right now and he is able to be there and cope even though they upped the age to 8-12. Finding them that environment to flourish can do a lot, helps the self esteem as well as developing their interests and gets him socialized!

Good luck at genetics feathers:hugs: What things did they screen for?

Some big achievements coming through, new words and writing skills:happydance:

Thurinus, yeah I get it. Two of my girls are and were advanced, no global delay (did have the EDS impacts but that's different). My eldest was reading chapter books by 3 and her IQ was tested to hit the ceiling at 155 in the WIPPSI test. Big difference from that to full global delay with cognitive impact. :hugs:

Annaouska, I hope you're not waiting too long :hugs: Did they say anything about the white matter and what it could be?

RachA, I hope you can put a pic up, I'd like to see it. Writing a letter is huge:happydance: Does she have hypermobility? 

Seems a lot of the kiddos have hypermobility?

We have a busy couple weeks, my 6 year old has the wheelchair people on monday:happydance: his IEP progress report is in the morning, 5 year olds is on Thursday, perinatology Friday morning and then Alasdhair's MRI Friday, check in at 12!! His scopes are booked for dec 3rd, dreading it because he's had so many reactions the last week or so.

Hope everyones weekends are going well?!


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## sequeena

Sounds like everyone is doing well at the minute!

Good luck for Tuesday feathers!

mummy3 sleep clinic where I am is run by a disability HV and a community nurse. It's a 3 week course I go every Friday (last one this week) for 2.5 hours and they talk through different sleep techniques, tailor a bedtime routine just for your child etc.

They noticed T is waking a lot between 10-11 so we've moved bedtime to 10.30 and it's working so far but he is still waking at about 4am :dohh: once it's sorted we'll roll his bedtime back slowly.

I have HMS too but not to the extent Thomas has it. I sprained my ankle yesterday (it's weak and gives way a lot). I was pushing T in his chair at the time and almost tipped him sideways on the road into the path of an oncoming car :( he's OK though. My ankle is swollen today and very painful :(

I was told SALT are running sessions in January so I should get a letter at some point.

SALT are also doing a get rid of the dummy clinic on December 15th so I'm going to go along.


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## Boo44

Sequeena I would love it if you could tell us what they say at the get rid of the dummy group. That sounds great! I need all the help I can get xx


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## annanouska

Yes I'm on the banish the dummy brigade too BUT I think he's slowly self weaning as he now goes longer periods without will give it to us before nursery etc so I'm not pushing it too much right now. W are on our holidays we pop home tomorrow for blood tests then another x3 nights at a different premier inn. Last week was centre parcs, amazing! He's coping well but here the restaraunt starts service at 6... I takes almost two hours :wacko: great fun with a tired hungry additional needs toddler. We found the wifi and mr tumble has helped massively :haha: x


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## sequeena

I will let you know :) it may not work for us yet but I'd love to be free of the dummy!


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## RachA

Lots of little promising things going on at the moment by the sound of it.

How's Thomas' sleep clinic thing going? Has it helped at all do you think? 

Mummy3 - no she doesn't have hyper mobility - well not as far as i know. She has been seeing a chiropractor though. She's a friend who is looking into chiropractic treatment for children with additional needs so is using Esther as a bit of a guniea pig. She's said that Esther is too bendy. She should of grown out of things by now but she hasn't. I don't know if that means that she is overly mobile but at the moment we aren't taking it any further as she's a lot of deal with now she's at school.

Hopefully this picture will of worked. These are the 'E's that she did the other day. She then did some lower case 'e's yesterday.



I feel weird knowing that the rest of the class know their alphabet and are starting to link the letters together to make short words and Esther doesn't actually realise that the letters she knows can be put together to make words!


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## Reid

Hi everyone I had my son's salt out yesterday she was filling me in on her visit to his nursery a couple of weeks back. She said it wasn't what she expected and was surprised in a good way the only issue he seems to have is at large group time but she explained to the nursery manager why he finds it hard which I was really pleased about. When they start off group time all the nursery kids come together but the staff tell them what to do what songs they'll be singing and his salt said it's to much language for him which is why he will run off or start doing rolly pollys but as soon as they start singing he runs into the middle of the circle and dose all the actions to the songs.
I was told today as well by the nursery manager that the manager from the more specialist nursery is coming out to observe him and see is their nursery would be suitable for him she will be in 2nd Dec then I can go and visit the nursery if they deem it suitable after that we all have a meeting to discuss what's best. :) xx
Hope everyone else is doing well xx


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## Feathers

Well we have an official clinical diagnosis of Noonans Syndrome. I was expecting that so it wasn't too much of a shock. She said they had been considering Williams syndrome but seeing her today she is confident it's Noonans. We had more photos taken and will be seen again when all our DNA results are back (which will be in the next 2 years - wow lots of time) but it's now on her medical record that she has Noonans Syndrome and we're being sent for a heart work up because of the high percentage of children with congenital heart problems with Noonans.

I feel...okay about it. I think I got over my upset in September and I'm more worried about the heart thing than anything else. At least we know and aren't in that undiagnosed group any more which is a relief.


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## Thurinius

That's great lynne1983.
My son used to always run off at playgroup when anyone started singing - quite rude:)
Anytime I start singing now he tells me very crossly 'no sing'
I don't think,he likes lots of noise... Or my singing.


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## mummy3

Ouch sequeena! Hope you're able to rest up your ankle:hugs: HMS/EDS of any form can hurt alot:hugs:

Getting rid of the dummy and sleep clinics are brilliant ideas! We haven't used a dummy but sleep can be hard. 

RachA, bendy would fit hypermobile, there's a lot to deal with though so one thing at a time. Love her pic!!!! Its very clear. I hear you though:hugs:

2 years?! Why so long feathers? What is involved in Noonans? Its always hard to get any dx, but its positive to have an answer and then to get a plan:hugs: My neighbor has identical twin boys with Williams syndrome, they're 10 now and great friends with my bigger boy.

Thurinius, does he do the whole hands over ears when he doesn't want to listen or things are too loud? I cant help laughing when my kids do that!! Same when we're in the car anywhere and at least 2 of them spend the journey hands over ears and humming :rofl:

Ruaridh, my 6 year old had the last step for his electric wheelchair yesterday, he had to get measured and then we had to look through and decide model and colour (red with requested yellow lightening painted on lol). It was the assistive devices specialist from the durable medical equipment part of our insurance that came not a PT. He was really helpful with Alasdhair too, recommended a gait trainer and gave us the name of the right orthopedist to get in with, we go next month:thumbup: 2 positive progress reports from my ASD kids too, so great day!!! Then today I have 2 off school with flu/virus, cant win with kids huh?!:dohh:

Hope everyone is well:hugs:


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## Feathers

mummy3 said:


> 2 years?! Why so long feathers? What is involved in Noonans? Its always hard to get any dx, but its positive to have an answer and then to get a plan:hugs: My neighbor has identical twin boys with Williams syndrome, they're 10 now and great friends with my bigger boy.

We're part of the DDD project so they are mapping out all of mine, OHs and DDs DNA. It will show up every/any genetic issue not just one specific test for one. It takes so long because it's so complex to do I think. They did offer us more specific DNA tests but given Noonans only shows positive for those in 50% of cases we decided it wasn't worth the extra trauma for DD.

Noonans has a few key features, heart abnormalities (DD is going for a scan to check), feeding problems, certain facial characteristics such as ptosis of the eyes, hypermobility, bleeding/clotting issues, lymphodema, speech and hearing issues, delayed development, behaviour and intelligence issues. I could go into more detail but that's the general overview.

It is better to know I think and many people with Noonans live a normal life so the prognosis isn't terrible in the long term, although it's a spectrum disorder so there are no certainties.

Sorry to hear about your flu issues, sick children in the house is awful! Hopefully they'll feel better soon.


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## Thurinius

Good and bad week. The good, I have found a nice nursery for my son. The staff seem really nice, fully clued up (they can all do Makaton signing) and even if we don't get the exceptional needs funding for 1-1 I feel sure the staff there won't ignore him but make sure he is actively engaged.
The medium, Christmas not a good time for my sound sensitive lad. Apparently he got very upset at playgroup as they were practising singing jingle bells - he tried to collect up all the bells to put them away! :) 
The bad. Some of you will be aware of the awful experience I had with my son's old nursery. In his first week they called me to say they were concerned about his behaviour being different to the other kids. Then spent 3 hours bullying me into withdrawing him. After reading their sen policy I could see what they should have done so I complained to the governors.
All I asked for was an explanation as to why given his playgroup had told them of his needs nothing was in place for him, why when it became clear he had issues why they didn't enact their own sen policy which was all about making adjustments to include him. I also asked for an admission he was failed and I wanted assurances it wouldn't happen to anyone else.

Well I got the letter. The governor says she talked to the staff and is happy that a number of options were out to me and that it was entirely my decision to take him out. And also,that they received no information on his needs from playgroup.
I am so shocked by this. Because both counts are utterly untrue, I was at no point given any options bar taking him out. I was so sad that all this was happening in his first week I practically begged the teacher to let him have longer to settle in and she just said 'nursery is not the right place for him'
And playgroup DID tell them, they had two face to face meetings. Feel awful that their professionalism has been called into question when they have down so much for me and my son.
I just cannot believe that they are lying like this!


----------



## Reid

Oh my that's shocking it's like getting let down all over again. Could you ask someone at the playgroup if they kept any paperwork on the meeting with the nursery or ask them to put it in writing and send it on to the governor I'd be fuming could you get a face to face meeting with the governor? If not see if you can put in a complaint above that.
Anyway onto the good news that's fantastic you've found a good nursery for your son and sound likes he'll have a much better time at this nursery.
I'm sort of similar my son is in main stream nursery at the moment but due to his speech delay they find it hard and deem him to need more 1 to 1 support so in Tuesday there's another nursery coming out to observe him and see if he might do better with them in no they have speech therapists on site each day staff are better trained ect so just waiting to see what happens on Tuesday xx


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## Thurinius

lynn the playgroup are fuming because they think their professionalism is being called into question. They have been lovely to us, they have filled in form after form and now are doing all the things that need doing for his exceptional needs funding. It is just not credible that they wouldn't have mentioned it in their meetings with the nursery. They have told me they did.
I think what I might do is go in and talk to the head and say that this is the last chance for them to fess up and apologise etc because I have caught them lying and I can prove that they have lied.

I just don't get it. Where i work if you muck up, you fess up and yes its not nice but the emphasis is always on what we can learn from failure for the next time. If the transition period between playgroup and nursery involves hearing about so many children on one day they zone out and don't catch all the info: then say so for gods sake and they can change that. 

Upsetting re you lo's nursery. I hate change (not as much as my son but I don't like it) I hate the fact in this county we have stupid first, middle and upper schools so my ds will have to go to three different schools. Stupid.
I hope you find a good fit for him. Maybe its good that your nursery is being up front that they cant give him the help he needs. Otherwise they might have tried but not been up to it and he would have ultimately suffered for it. If you find a better fit with a different nursery then he is being given all the right opportunities to flourish. 
:hugs:


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## Reid

It's actually down to the educational psychologist this possible nursery move I must admit I was really taking back when it was 1st brought up I just didn't expect it other than speech delay my son doesn't have any diagnosis. Now I've had some time to think over things and know now what his other nursery can offer I'm really hoping they can offer him a space the only thing I feel uneasy about is the fact it's a bit further away his current nursery I can see from the kitchen this new 1 would be 20 mins or so on a bus or taxi which would be provided free to him he'd be with a member of staff all the time but well because I haven't met them or seen the nursery it's still unknown. You'll need to keep me up dated on how your little man gets on in his new nursery xx


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## annanouska

:hugs: to be honest is say forget it. Right now you have a lot of battles on your hands and this doesn't look like one u will win solid focus on ur son the assessments and moving forwards :thumbup:

I feel so lucky about our mainstream nursery, my sons needs aren't hugely apparent tho. He eats weird things, is OCD with routine and hates change but they have incorporated this to help him s added grou thins etc to his routine.

I wold get some ear defenders if noise is too much,my son now loves woodwork with daddy when before he would meltdown even if dad was I. She'd and he was I doors. We have the edz kids ones x


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## Thurinius

annanouska said:


> :hugs: to be honest is say forget it. Right now you have a lot of battles on your hands and this doesn't look like one u will win solid focus on ur son the assessments and moving forwards x

I can't do that. I really can't because despite the upset and the stress this is causing me there is a point here that I need to make for every other parent with a sen child.
I simply cannot allow them to get away with this bullying behaviour. 

They have all these policies and procedures that aren't worth the paper they are written on. And I won't let them so casually lie and besmirch the reputation of the frankly fabulous playgroup.

I have heard that they have not been particularly nice to the sen kids still in their care, so I am pursuing it for them and all that will follow. 

Steps off soap box :)


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## Reid

Some good news and some bad news today for us.
We had the manager from the more specialist nursery come and observe my ds today to see if they think the nursery could fit his needs good news is they do and they think he would get on great BUT now the bad it's full ni spaces at all :( gutted and it could be august before he can get a place. The manager is going to speak with he relevant 1s to see if they can move it on a bit.
My question is is there anything I can do anyone I can phone to push it on in anyway at all? I was going to call the educational psychologist who had this nursery come out in the 1st place and his salt bit other than that who else can I go to? I'm in Scotland btw xx


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## sequeena

Sorry I'm not around ladies. Bit up and down here. Busy with his statement. Hugs for everyone :hugs:

Thurinius any updates about nursery?

Lynne I really don't know what to suggest :( could he go elsewhere?


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## Reid

sequeena said:


> Sorry I'm not around ladies. Bit up and down here. Busy with his statement. Hugs for everyone :hugs:
> 
> Thurinius any updates about nursery?
> 
> Lynne I really don't know what to suggest :( could he go elsewhere?

Nope other than staying where he is until August guess I'll just need to wait till the meeting a called for us all to get together to see if they can come up with anything I'm guessing it will probably be after Christmas now x

How are you getting on with the new routine Xx


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## Thurinius

sequeena said:


> Thurinius any updates about nursery?
> 
> ehere?

Have a conclusion of sorts with horrible nursery. I told the playgroup leader what the governor had said, that the staff claimed to be given no info on my son re one brief line on his language delay.
She came back to me and said she felt that it was down to her to meet with the nursery teacher, the Headteacher SENCO and county inclusion officer to meet and hash out what went wrong.

Obviously I'm pretty upset and angry still and frankly would like everyone involved sacked or flogged or something. But taking a step back and thinking on what I wanted to achieve by complaining: I wanted to ensure it didn't happen to any other child and that they weren't allowed to get away with forcing my son out merely because he has educational needs.
So I think this meeting will achieve that. They will get a ticking off by the county inclusion officer, be shamed in front of their head and SENCO and the playgroup get to prove that they did everything right.
So I'm letting it lie.

The playgroup leader has ensured me that it's not the end of the matter for her and I feel confident that she will hold them to account. Though an apology might be nice still.

It's a relief to let it go to be honest. Now I can concentrate on preparing my son for his new nursery, and I have a couple of amazing things happening in 2015. So I'm feeling quite positive about it all. 

Lynn so sorry to hear about the nursery, does he definitely have to leave his current one? I suppose you could attend lots of toddler groups to keep his socialisation going. It's very had, don't know what to suggest.
Hugs to all


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## RachA

Thurinius-glad there's been a conclusion of sorts. 

Lynn-I assume that you'll have to wait for the place to come up in august as I don't think they'd be any way they could take him if they are full, no matter how hard you push. I would suggest seeing what help can be put into place at his current nursery-they must be able to employ someone with special needs experience or else someone willing to learn.


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## Reid

RachA said:


> Thurinius-glad there's been a conclusion of sorts.
> 
> Lynn-I assume that you'll have to wait for the place to come up in august as I don't think they'd be any way they could take him if they are full, no matter how hard you push. I would suggest seeing what help can be put into place at his current nursery-they must be able to employ someone with special needs experience or else someone willing to learn.

This is what I said to them if they could get him a key worker with specialist training on speech delay they said if that happens which they doubt they would put that member of staff into the new nursery as they have more resources in there plus they could possibly take another 1 or 2 children with similar issues there 2. It is looking like we're going to have to wait till August but this specialist nursery is going to send someone out to put a programme in place for his current key worker to work on so I mean that's better than nothing just feel so deflected by it they totally hyped up this nursery it's fantastic staff and resources had them àll out to see him think hed do great there but can't offer him a place so why he big song and dance hey ho just got to make the most of the situation were in and I'll have some questions ready for the meeting when they all come together xx


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## annanouska

:hugs: not much going on here. We had the team review. He deff has language disorder alongside his epilepsy and a lot of sad features butntheyndont want to diagnose autism just yet. I feel very frustrated as he's just in this limbo with ability he's not as poorly and behind as so,e but not the same as others. His consultant was absent poorly so just slt hv play worker and me so maybe would have been diff. Our appointment for his brain scan is now feb. it sucks being told he has abnormal white matter patches we don't kno what it is but we will run bloods for horrible things and make u wait 3 months. Grrrrrr


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## RachA

lynne1983 said:


> RachA said:
> 
> 
> Thurinius-glad there's been a conclusion of sorts.
> 
> Lynn-I assume that you'll have to wait for the place to come up in august as I don't think they'd be any way they could take him if they are full, no matter how hard you push. I would suggest seeing what help can be put into place at his current nursery-they must be able to employ someone with special needs experience or else someone willing to learn.
> 
> This is what I said to them if they could get him a key worker with specialist training on speech delay they said if that happens which they doubt they would put that member of staff into the new nursery as they have more resources in there plus they could possibly take another 1 or 2 children with similar issues there 2. It is looking like we're going to have to wait till August but this specialist nursery is going to send someone out to put a programme in place for his current key worker to work on so I mean that's better than nothing just feel so deflected by it they totally hyped up this nursery it's fantastic staff and resources had them àll out to see him think hed do great there but can't offer him a place so why he big song and dance hey ho just got to make the most of the situation were in and I'll have some questions ready for the meeting when they all come together xxClick to expand...

If they can put a program together that his key worker can put in to place then you don't necessarily need a key worker with special needs experience. Esther's key worker had no experience but was amazing with her and took it on herself to learn signing etc to help Esther and a couple if other children at the preschool. 


You must feel very frustrated Anna-good you get some answers soon.


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## Reid

RachA said:


> lynne1983 said:
> 
> 
> 
> 
> 
> RachA said:
> 
> 
> Thurinius-glad there's been a conclusion of sorts.
> 
> Lynn-I assume that you'll have to wait for the place to come up in august as I don't think they'd be any way they could take him if they are full, no matter how hard you push. I would suggest seeing what help can be put into place at his current nursery-they must be able to employ someone with special needs experience or else someone willing to learn.
> 
> This is what I said to them if they could get him a key worker with specialist training on speech delay they said if that happens which they doubt they would put that member of staff into the new nursery as they have more resources in there plus they could possibly take another 1 or 2 children with similar issues there 2. It is looking like we're going to have to wait till August but this specialist nursery is going to send someone out to put a programme in place for his current key worker to work on so I mean that's better than nothing just feel so deflected by it they totally hyped up this nursery it's fantastic staff and resources had them àll out to see him think hed do great there but can't offer him a place so why he big song and dance hey ho just got to make the most of the situation were in and I'll have some questions ready for the meeting when they all come together xxClick to expand...
> 
> If they can put a program together that his key worker can put in to place then you don't necessarily need a key worker with special needs experience. Esther's key worker had no experience but was amazing with her and took it on herself to learn signing etc to help Esther and a couple if other children at the preschool.
> 
> 
> You must feel very frustrated Anna-good you get some answers soon.Click to expand...

Yeah the thing is the nursery he's at just can't give him what he needs which is more 1 to 1 time he's only getting 6 hours a week and alot of the time they phone me to go and pick him up he is ment to get 16 hours. His key worker dose the best she can but she has others In the group she has to care for xx


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## RachA

Would they let you do the 16 hours over 5 days (if you wanted this) do that it doesn't get to the point where they need you to pick him up? It's not fair on you to have to pick him up early from each session. Or else just cut his hours down for now. I know that's a bit like a backward step but maybe he'd be better with less scheduled time at the preschool.


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## Reid

I don't think so they don't really want to take him more than 2 hours at a time they would possibly add another 2 hour session maybe something I can bring up at the next meeting which I think will be after new year but they all attend the meeting salt educational psychologist ect.
When I went to pick him up yesterday I knew they had a christmas jumper day on fri then a party the following fri (they asked me 2 days before the Halloween party not to take him) so I was ready for them saying about it his key worker asked did Marie (manager) speak to you about fri and next? I said no but I no its your jumper day and party so I'll talk to her on my way out obviously didn't want me to send him. So I said to the manager on the way out what his key worker said she asked if I was coming I said I can't I'm working all day but I want junior to come as normal I want him to at least be giving the chance to see if he likes it his papa will be at home if you really need to phone for him to pick him up she didn't look all that pleased lol but I don't give a shit it's not fair when he's being asked not to go to all the fun days when they haven't let him see for himself if he likes it. Xx


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## Reid

annanouska said:


> :hugs: not much going on here. We had the team review. He deff has language disorder alongside his epilepsy and a lot of sad features butntheyndont want to diagnose autism just yet. I feel very frustrated as he's just in this limbo with ability he's not as poorly and behind as so,e but not the same as others. His consultant was absent poorly so just slt hv play worker and me so maybe would have been diff. Our appointment for his brain scan is now feb. it sucks being told he has abnormal white matter patches we don't kno what it is but we will run bloods for horrible things and make u wait 3 months. Grrrrrr

That's a shame you have to wait till Feb :( xx


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## annanouska

Consultant rang today as she missed the review. She is happy him waiting for the other consultant until feb, also got to repeat some of the genetics as not enough blood on some tests grrrrr. She is ok with how his seizures are controlled right now and making progress. If he regresses or any issues I need to see her before feb. she said all these tests are trying to understand if there's a rare syndrome causing his fits and delays etc but didn't mention his scan. She just said I want them to see him as how he looks on paper and how he is are different. That makes me wod er does the scan suggest something terrible and he doesn't come across that way or vice versa?e:shrug: its a minefield. I just keep thinking he's progressing, yes a bit slow but its moving forward that's all that matters. I don't think he will get ASD as there's so much random other stuff going on. Tis language disorder sounds so trivial but it affects him a lot, he is learning new words, house and train yet can not even attempt mummy or bed etc. he still lines stuff up licks things can be very violent run in circles when happy but nobody seems to care :dohh:


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## RachA

We had a report emailed to us from school today - all the children in Reception have been issued one. In one respect its a really nice progress report with loads of pictures in it. I think they are going to be sending them out every term or half term.
It gives the age ranges of where they are at developmentally. So things like drawing a picture of something and they use that to assess motor skills and language iro of if the child can say what they've drawn and give specific details etc.

From the report it looks like Esther is about 50% falling in the 30-50month age range and 50% in the 40-60month. However there are some aspects (mainly maths) where she is in the 22-36month age range. 
It's a shame they can't give a more specific age so that we know if she's closer to the 50 or 60 months or if she's still back at 30-40months. Personally i'd say that she's knocking about at the 36 - 40 months.


It was good reading and was lovely but it did make me shed a tear or two!


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## sequeena

Rach :hugs: how is Esther doing at school? Bless her!

Sorry I've been mia again so much going on with statements and such.

Genetics wrote asking me.to ring and make an appointment which I'll do tomorrow. SALT rang and offered 4 sessions of therapy starting on January 22nd. Last sleep clinic Friday too and also need to ring LEL

Had a big shock this morning T has been awarded HRC and HRM. It's a massive weight off.


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## Thurinius

I have a question, what exactly is a statement?


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## sequeena

https://new.devon.gov.uk/send/send-information/how-is-support-decided/

The link explains what it is x


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## RachA

sequeena said:


> Rach :hugs: how is Esther doing at school? Bless her!
> 
> Sorry I've been mia again so much going on with statements and such.
> 
> Genetics wrote asking me.to ring and make an appointment which I'll do tomorrow. SALT rang and offered 4 sessions of therapy starting on January 22nd. Last sleep clinic Friday too and also need to ring LEL
> 
> Had a big shock this morning T has been awarded HRC and HRM. It's a massive weight off.

Really good about the DLA :) 


Esther's doing well at school in so far as she's settled in really well. She enjoys going and she actually joins in with various things like PE (at preschool she'd enjoy watching them dance etc but wouldn't join in). 
She's very chatty in her own way. She is picking up things but obviously not as quickly as her peers. She is recognising around 6 or so letters and numbers up to 5 but can't put any letters together yet. And the only letter she can write is E and that's a bit hit and miss. Everyone concerned is pleased with the progress she's made even though on the surface it doesn't look like much :)


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## sequeena

Well it might not look like 'much' to outsiders but that really is a big improvement in what, 3 months? Well done Esther! X


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## RachA

Yeah it's a huge improvement and I'm sooo pleased :) 

I just wish my mil would see the improvements and accept she's getting there in her own time.


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## sequeena

:ignore: your MIL. It's very easy to wish they would do things faster (I've been guilty of it at times) but when I think back to where Thomas was just a year ago he's done so much! OK so he's nowhere near kids his own age but he IS progressing and that's the main thing.


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## annanouska

:hugs: my mil thinks everything M does is worthy of world recognition and can't even see where he's behind :dohh: she refuses to accept he's any issues at all tho so...

Is great how well she's doing and Thomas too. I think progress no matter how slow or small is brilliant. This time last year Marcus had no hair, couldn't walk or talk at all screamed pretty much all day and just loved in his own bubble. He now has hair walks and runs, has around 20 ( mostly pointless!) words and interacts a lot more on his own terms.

I think M will be similar to Esther in some ways in that I think not everything will be fully exlained/ have a reason. I do think he is wired up a bit faulty somewhere and that causes things but I've work so very very hard on therapy and things at home special techniques etc i think sometimes the ppl concerned don't see it aside done a lot of the input children usually get referred to. He's been much better the past few days, I'm wondering if he has had a few seizures of a night I've not noticed s he is often upset and hard work then has some then appears a new child!

Is essie ok not heard from her in ages d


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## essie0828

Hey there anna :hi: 

We have been sent on to genetics after DDs MRI showed demylenation inconsistant with CP. Did bloods and met with the genetic dept today. Not much to go on as of yet. Tests will take about 4 weeks and in the mean time we are continuing therapy and hoping this isnt a progressive disorder. :hugs: to all


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## annanouska

:hugs: Essie. Marucs has demyelination too I think , the white spots on mrs? He has several all over his head :growlmad: we too are waiting on a specialist to explain more. He's had bloods but need to repeat some but not had the form yet . X


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## Reid

For those who's kids have speech delay 
When it comes to tidying up and discipline what do you do?
I'm at my wits end here junior understands alot of language like if I tell him no but he doesn't understand if I go into a story of why I'm saying no like of he was running towards the road he wouldn't understand it's for his safety.
One of the main issues is mess I don't deal well with mess at all and yes I no its my issue but right now it's getting out of control I don't mind a few toys lying round or even him playing on the floor with playdoh it's that he wants ever single toy he has in the living room on the floor he tips them out the box then after a while will get something else do the same and so on but if I go to clear by toy 1 it's a screaming match he wants it any advice or anyone in the same boat I'm ready for ripping my hair out lol xx


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## sequeena

Lynne if.you find the answer let me know I have exactly the same problem :)

I hope everyone's Christmas went well. We had a lovely Christmas say but boxing day and the 27th were tough as we were round a lot of people and children.


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## bumpin2012

Hi Ladies. Not been around much, things are busy here with 2 little ones!

Mr G had his genetic consult and blood work review. Nothing identified. His speech/language delays are falling further behind and he is being referred for autism assessment. I am starting to think he is Aspergers, with S/L delays caused by frequent ear infections. Sleep is still an ongoing issue here too.

I limit the toys allowed out. I have separated all the toys into several bins with lids. He gets a new bin to play with each day.


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## Reid

sequeena said:


> Lynne if.you find the answer let me know I have exactly the same problem :)
> 
> I hope everyone's Christmas went well. We had a lovely Christmas say but boxing day and the 27th were tough as we were round a lot of people and children.

Lol my fear Is there is no answer to it xx


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## annanouska

For the story and language...just don't go into a story. Stop danger or stop road etc are all I try with my son. Also he has a picture stop sign and we can sign stop too. He started just the picture then learn the sign and can now even say stop too. His walking is terrible ATM he just runs off anywhere incl roads etc. I have to use a restraint but he kicks off majorly but ive no choice he can't just running into the roads :dohh:

Regarding toys, we had a huge issue with this and he often thrown the tub over his head. Since moving up to the bigger nursery class I think its army drilled in at tidy up time, plus he goes to a song / sign group and she has tidy up song too. He is better at tidying now but will still cause a complete mess in the first place. I do now move thig s slightly, eg a line of cars on sofa I will move to floor in eact same line if we need the sofa to sit etc. I know its a bit cruel and I adapt everything to his needs but he was dictating everything, he is slightly more accepting of these minor moves now.

We are on a bit of an up ATM, he has developed a few new words. U the disorder is very evident. Most hilarious is he has just learn to say mum in last few weeks yet he says giraffe with no effort?! The sorts of words he learns are unusual, he copies things eg Tom for tree fu Tom. They are keeping an eye on him still for ASD but he is a puzzle. I'm sure whatever is wired a bit wrong in his head is causing the epilepsy and other oddities.

X


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## Thurinius

Just wanted to say a happy new year to you all. Hopefully your Christmases were great. We had one minor meltdown taking my ds out with his grandparents for a pub lunch. His little brother wanted to sit on my oh's lap but my son was very determined he should sit in the baby chair.
I think this might be playgroups doing as they insist they all sit down together for snack time and he has applied this to all settings.

Anyhow like many of,you I'm starting 2015 as he mother of a child with a disability, something I never foresaw 12 months back. But after the last few months of shock and stress I am feeling positive about this year.


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## RachA

Lynne-I agree with Anna. You don't need to go into a story about why something should be done or not. If they don't understand there isn't any point. While it's nice for them to know that running into the road is dangerous I don't think they actually need more than 'no, stop, danger' until they can understand. 

With the toys I would limit what they have access to. Usually we don't have many toys downstairs so it's pretty easy to tidy up after them. Preschool/school is pretty good at teaching them to tidy away too. Esther is actually pretty good at tidying up but she us also pretty good at making a huge mess too!!! 

We had a good Christmas period. I travelled to see my brother and family who live abroad. I went on my own with the two kids which is something I've never done before. We had to take two plans and a ferry to get there and the kids were so good especially considering we were delayed at one of the airports for nearly 3 hours and our suitcase with all our clothes in never made it!!! They also dealt with a week of hideously late nights and long lie-ins really well and returned to school no problem :)


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## Boo44

Hi girls I know a few of you have experience with seizures and I wonder if you could advise me on this - a friend of mine's son is 2yrs 3 months and nursery told her that he had a 'funny turn' yesterday where he was playing ok then lay down with his eyes closed and wouldn't respond to them for a minute or so. My friend wasn't too worried as apparently he does this almost every other day, usually when he's grumpy or upset or tired, he will just lie very still with his eyes closed until he's ready to respond again, eg if they tickle his tummy or something he will smile and be ok again.
Also for 2 weeks he's been waking around midnight crying and having like a full blown tantrum kicking his legs and very upset, and refuses to let his parents calm him, it can last for up to 2hrs until he will respond to them trying to comfort him. This is completely new.
Other things are he doesnt like others touching his toys (normal 2 yr old stuff) but will throw his head back and scream. And he is probably speech delayed, although he can speak words he generally chooses not to.

Do you think the lying down and the night 'tantrums' could both be seizures?


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## sequeena

Doesn't sound like it to me. The laying down thing is similar to my son he kneels down and puts his head in hands for as long as 45 minutes. He does it because he needs to reset himself. The night time thing is probably night terrors or nightmares of.some sort.


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## Reid

We had some huge positives the last 2 days. Yesterday I got a call from lo current nursery saying they had just been informed there was a space at the specialist nursery so they have set a meeting up with all involved which will be Wednesday coming to discuss options ect 
Plus yesterday we went to Bruce teeth before bed and I had got new toothpaste with Thomas the tank on it I said to lo look that's Thomas I pointed again and said who's that he said not just Thomas but ats Thomas was super proud and to top it all off I went into the bathroom today to find a poo he done his 1st poo in the big toilet all by himself no steps or anything I never need so happy to walk into the toilet and find poo lol I really feel were off to a good start thus year :) xx

Yeah I'd agree with above 
My son's had a few what I can only guess are really scary nightmares to the point he's shaking crying and he won't leave my side the worse 1 it took about an hour to calm he he was really freaked it's horrible.


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## RachA

It's the small things isn't it Lynne?! You must be really proud of him. 
Really good about the preschool too :) 

Esther's got a review next Monday. She doesn't come under the child development centre anymore as she's at school so her review is at a clinic (where she had her initial assessment which showed she was behind by a lot).


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## Reid

RachA said:


> It's the small things isn't it Lynne?! You must be really proud of him.
> Really good about the preschool too :)
> 
> Esther's got a review next Monday. She doesn't come under the child development centre anymore as she's at school so her review is at a clinic (where she had her initial assessment which showed she was behind by a lot).

It sure is and I am soooo proud of him. 
I'm looking forward to the meeting to see exactly what they can offer him to help with his development
How often do you take Esther for assessments? 
Let us know how she gets on xx


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## RachA

Very exciting. I'm sure they'll be able to do loads. 

Esther was having an assessment every 6 months. She was due one in Oct/Nov but due to starting school she comes under a different team and I'm assuming they didn't have an earlier available date. I think from now on she'll be assessed once a year but we can call for an assessment earlier if we are concerned; the school can too. 
Thanks-I will do.


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## Boo44

Thanks everyone I guess I thought it must be more than that x


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## annanouska

It sounds unlikely to be a seizure as it sounds like he has a degree of control,over the situation, if his speech is delayed maybe it's his way of communicating he needs quiet time. That said the best thing to do would be to video if possible or keep a diary. It does sound night terror ish of a sleep time but everyone thought my son was having night terrors and they were seizures. Is he vacant stares right through U seems in a completely different world kind of thing?

Nothing new going on here, his communication is improving well...a bit weirdly at times but well. His sensory issues are bad tho and nobody is too bothered by them, ot said he doesn't do it permanently so its behavioural not sensory :dohh: no it's because he's not stressed In your controlled environment!nhe sees the specialist feb I hope to get more answers on the brain blobs!


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## sequeena

If only these kids were performing monkeys. I know doctors can only act on what they see but it's so frustrating when they won't accept what we say.

Thomas and yogurt = nightmare but it's the only thing he wants right now. All he does for the first 5 minutes of having a yogurt is cry and screech bbecause he doesn't like the texture - what??????

We did have his yearly appointment with his plastic surgeon come in the post today. His thumb is so loose now. I don't want to do surgery again as the last lot didn't work but I don't know what the options would be? Thomas won't tolerate a splint.


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## annanouska

Does he like frozen yoghurt? I freeze yoghurts in the pot then pop out he seems to like tha! It's very hard isn't it, marcus is so much improved on medications so I think ppl don't see the real him at times. He spent an hour repeating sorry daddy today over and over again for no reason x


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## sequeena

He won't do anything frozen either. He's the only child I know who won't have ice cream in summer. He would sign for it but once he picks it he realises he doesn't like it :dohh:

Poor Marcus. It does make you wonder what goes on in their heads.


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## annanouska

Marcus is like a computer that works ok but sometimes gets stuck on that screen of doom and freezes and no matter what u can't reset it then it randomly works again!

It's not a bad thing he won't have ice cream I guess :haha: after the meltdown will he eat is yoghurt? Really good if he does shows he's challanging himself. Does he find other things like cold custard angel delight type things hard to cope with too? We are going through if he doesn't even like the look of it won't touch it phase. I'm just cooking a roast, I think he may contemplate a potato then meltdown as there's not enough carrots lol x


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## sequeena

He does eventually though sometimes I have to feed him. He won't do custard and the like not even jelly. Bless him he can't even have gravy on a sunday dinner :haha:

These bloody kids.


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## annanouska

:wacko: marcus just had a compete breakdown throwing everything smashing glasses etc...transpires he wanted an apple. A sodding apple :dohh: 

We've been dumped by everyone :cry: hv doesn't see us now the disability HV doesn't either, he doesn't do group slt now as so,embody goes into nursery! He still sees his consultant and hopefully this extra one in feb. Just seems weird that he was doing so much now isn't. I'm continuing to raise him as if he does have ASD alongside his other issues and its healing a lot he responds to the techniques and tools well. His speech is doing very well for him, far from an average child but huge leaps for us. He does still seem to randomly repeat over and over for an hour or two somehting odd. His new phrase is hello, hello, how are u! Wonder who picks up he's a Mr tumble geek lol.


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## sequeena

Oh hugs xxx

The hv dumped us too and the disability hv doesn't seem that bothered so I know how you feel about that :(


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## Reid

Oh that's rotten you've both been dumped by the hv so is that it then no more support??
I had the meeting about my son going to the new nursery was not very happy when I arrived to be told the nursery manager couldn't get out after all the fuss they made I originally told them I couldn't get the day off work 2 staff members were on holiday and 1 had that day for a dental app so she cancelled her app and swapped days with me and then the manager couldn't make it pft.. anyway I learned that there is another child as well as mine in for this 1 space that's come up there will be a big meeting at the end of this month to decide who gets it.
In the meantime there going to arrange for me to go along to the nursery to see it and meet the staff because none of my questions could be answered today a bit miffed but not much I can do xx


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## Thurinius

A positive day for us. The special needs hv came to assess my ds. She was sooo nice and so good with him and I really think she saw the best of him. She saw what I see every day, a really happy smiley clever little boy. She got him interacting with her and playing with her.
She said that she can see that he really wants to communicate but his language isn't good enough. And she can see he really wants to interact and play but can't read the social clues like over four year olds can. Such as at one point she stopped playing and just sat and my ds clearly wanted to play with some more toys and kept peering at her toy bag and shuffling from foot to foot but didn't actually initiate anything until,she finally said 'more toys?' At which point he smiled and said 'more toys'
And the thus afternoon we had his one hour visit to his new nursery, this was so successful that he's going again tomorrow for another hour visit


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## annanouska

:thumbup: with good intervention those things may pick up quickly. If language is an issue sometimes social. Yes and interaction can suffer too. Have u tried to introduce sign at all? It really is amazing. Since signing my son can pick up verbal words much better. We were at the doctor and I Moët repeating Dr to him to prepare him and he just looked blank but I signed stop. Look. Listen. The signed and said doctor to which he copied sign and said doc-a which I was really proud of. It seems to really help him.

We are doing 4 weeks of 1-2-1 play therapy then i think that's it. Hilarious as she said yesterday, I cna deff see where your coming from that he learns things disjointed and is a bit muddled in things....really?! You didn't notice months ago?!!


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## RachA

Thurinius said:


> A positive day for us. The special needs hv came to assess my ds. She was sooo nice and so good with him and I really think she saw the best of him. She saw what I see every day, a really happy smiley clever little boy. She got him interacting with her and playing with her.
> She said that she can see that he really wants to communicate but his language isn't good enough. And she can see he really wants to interact and play but can't read the social clues like over four year olds can. Such as at one point she stopped playing and just sat and my ds clearly wanted to play with some more toys and kept peering at her toy bag and shuffling from foot to foot but didn't actually initiate anything until,she finally said 'more toys?' At which point he smiled and said 'more toys'
> And the thus afternoon we had his one hour visit to his new nursery, this was so successful that he's going again tomorrow for another hour visit

He sounds like Esther. She won't just say what she wants. She will look at what she wants and look back at me or whoever and just keep doing this until she's asked 'would you like this?'. She will also say "what esther want?' and she just repeats it until someone says what it is that she wants. Sometimes i just don't have a clue what she wants and i get an hour of 'What Esther want?' She knows what she wants but she just can't seem to bring the words to her mind.


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## Thurinius

RachA said:


> He sounds like Esther. She won't just say what she wants. She will look at what she wants and look back at me or whoever and just keep doing this until she's asked 'would you like this?'. She will also say "what esther want?' and she just repeats it until someone says what it is that she wants. Sometimes i just don't have a clue what she wants and i get an hour of 'What Esther want?' She knows what she wants but she just can't seem to bring the words to her mind.

Very much the same. Yesterday my son was sitting on his bed smiling away, bouncing up and down and clearly very very happy about something.
So I asked him what was making him happy, but he doesn't have the language to reply so he just smiled and smiled and giggled and giggled.
Would love to know what it was that was so smile inducing.


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## annanouska

Marcus has quite a few words and signs now but he couldn't tell me why he was happy or what he wants most the time. If it's so,ethi g simple that he can say and see eg his dummy he will say "gogo" (dummy) some know but often just depends into guessing.

Any time sequel a or others on eye tests? We had an initial one now the bigger one with drops etc. I'll be on my own and just nervous about the drops as letter says they sting somg thing him still to do it will be fun x


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## annanouska

Just a private rant amongst friends...the current 2-2.5 yo knowledge thread on toddlers....seriously?! sometimes I'm glad he's a bit delayed,I get to enjoy the simple stuff with my son we go to the park for fun we bake we giggle (ok all this is on a good day) and I have no need to compete and show off he can sing the blooming alphabet at two! My son is a keen problem solver can unlock a door with a key near enough now, understands magnetism ( his whole magnet obsession is crazy atm) he knows every magnetic surface and non magnetic in the house. Although he cant explain it or verbalise its there. No real point to this just honestly some ppl need to get a grip...,my two year old only knows 1-10 are they really behind......


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## Thurinius

annanouska said:


> Just a private rant amongst friends...the current 2-2.5 yo knowledge thread on toddlers....seriously?! sometimes I'm glad he's a bit delayed,I get to enjoy the simple stuff with my son we go to the park for fun we bake we giggle (ok all this is on a good day) and I have no need to compete and show off he can sing the blooming alphabet at two! My son is a keen problem solver can unlock a door with a key near enough now, understands magnetism ( his whole magnet obsession is crazy atm) he knows every magnetic surface and non magnetic in the house. Although he cant explain it or verbalise its there. No real point to this just honestly some ppl need to get a grip...,my two year old only knows 1-10 are they really behind......


With you there :)
Even before I knew my son was autistic I was always secretly chuffed that he was so bloody minded that though he could wave, clap etc he wouldn't do it to order but rather in his own time when he felt the moment. 
And knowing now he does have a disability has taken the pressure off a bit. I used to wonder if I was babying him in not introducing cutlery earlier or potty training him but now I know that inside I think I probably knew he wasn't ready. 
And now I'm not going to stress that though he can undress himself he's not able to dress himself.


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## sequeena

Those threads do make me sad. Most of those kids are 1.5 years younger than Thomas and are doing so much more. I don't think about it too much or I start blaming myself.


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## Thurinius

sequeena said:


> Those threads do make me sad. Most of those kids are 1.5 years younger than Thomas and are doing so much more. I don't think about it too much or I start blaming myself.

Hugs to you. I feel the same sometimes seeing my younger son develop. I feel so sad that speech comes so easy to him and I am seeing everything that my older son should have done and didn't.
I feel an idiot for not bloody noticing that my eldest was soooo behind his peers. 
But then I get such joy from his tiny progressions and I try to concentrate on that, the small things.


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## RachA

There are so many things that make Esther happy or sad and she try's to tell us but she just doesn't have the words and it makes me sad to think we'll never know what it was.


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## sequeena

I ended up having a bit of a blow up on that thread. I can't do this to myself anymore I keep trying to interact like Thomas is 'normal' but he's not and I'm just hurting myself more and more reading threads like that. I so wish Thomas could do all that but he can't I don't know when he will :cry:


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## alibaba24

Iv never posted on here before but just wanted to say hope your OK sequeena x


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## Thurinius

I think a thread on what your child can't do at a certain age would be most refreshing and make people, even those with 'normal' children feel distinctly less cr*p about themselves.


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## alibaba24

Thurinius said:


> I think a thread on what your child can't do at a certain age would be most refreshing and make people, even those with 'normal' children feel distinctly less cr*p about themselves.

Good idea. In some ways Im a bit glad I never realised how delayed my daughter was\is I would have just gave myself even more angst dealing with it now I'd bad enough


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## annanouska

:growlmad: I wrote a really long and thought out reply, ran out of batter and. My iPad ate it!!

I backed u up sequeena, not just because your my friend but because I rerally thing it's a bit over the top. Those kids on there seem like Einstein children.marcus is delayed amongst his issues but I'm always advised by nursery the Dr etc it's not by much yet if you compare against those hes like the most behind person ever :haha:

Thomas is normal, all,our children are. We can't think any different as people fight so hard for disability awareness and Inclusion we can't go against it :hugs: Thomas has a gorgeous smile, I love how he sits with his puzzles and books in pictures. I do understand,I feel the same at times. I try to make light of it now, today we went to Costa which he loves...he decided he didn't ant his drink at first and wanted to lick the wall:dohh: he also waded into the sea.., the temp on the car said -2 :nope: this woman was like ohhh he's not right in the head doing that in this cold. She was joking not being rude as he looks like any other child I just laughed and said no he isn't that's why he is in medication and sees lots of drs :haha: she wasn't too sure what to say.

I wish my iPad hadn't died I wrote such a. Nice supportive thing and now I,mio full from profiteroles to remember. X


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## RachA

I know what you all mean. I'm past comparing mine, I never really did anyway, but it still upsets me to read the thread. I sit there and think 'you're querying if your 2.5yo is behind when they can do x, y & z. My 5 yo can't even do any of those things and she's at full time school!' 

More fool them I think tbh that they are that taken in by the comparison game that they don't even seem to enjoy their child just as they are. Everything levels out anyway to some extent. I know children who started school and they had always been well ahead of their peers in everything. By the time they finished primary education they were just average.


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## Reid

Wee update from us 

Things with ds current nursery have taken a huge nose dive since going back after the Xmas break I've been phoned just about every session to go and get him (his sessions btw are 2 hours) Thursday they said they couldn't stop him running about when I went up he was sitting at the audio player listing to a story so I stayed a good 40 mins he went onto the book section then snack table but today really got me 10 mins after I dropped him off I was phoned again to go get him said he was screaming shouting throwing chairs so when I went I watched from the window no one could see me couldn't hear him or see him at 1st then as he was passing a chair he pulled the back of it so it would fall no one reacted to this it was completely ignored I buzzed the door to get in. The nursery manager starting repeating the same crap she said on the phone at this point junior pulled another chair over so I went over to him to tell him no she said I can stay but I was to pisst off to stay so just went home. I just feel they don't want him there he doesn't fit in with there snobby wee nursery and there not even trying and ive decided I'm not sending him back whilst we wait to hear if he's got the place at the other nursery about 2 weeks away 
we've been to visit the new nursery and it's absolutely fantastic really impressed with it and the staff I just really hope he gets that space xx


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## annanouska

The nursery situation doesn't sound great. Ours are so good they are very accepting and tolerant even "if" a child was running around etc they just go with it. Fingers crossed for new one.

Sequeena how was your appointment today? X


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## sequeena

Sorry about the nursery :(

The appointment went well thanks we didn't meet the geneticist it was with a genetic counsellor. We went through all the family history today - suffice to say they were very interested in my family history!

It's a 3-5 month wait to meet the geneticist


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## annanouska

:haha: Andrews would be hilarious as they are such a weird family they don't talk about anything so he would prob answer well I don't know! Them I'd start rambling how I am certain his dad has autism I acutally wonder at times if hubby is slightly aspergers with his general hatred of any social situation not talking. Until 5 and weird obsessions he gets, as a kid it was lego now woodwork! My side would be boring to be fair.

I spoke to an epilepsy specialist and explained how much he has improved and changed since meds apparently it's very common in epilepsy when uncontrolled to regress and basically be a zombie.i never knew that. I think he is a bit of a puzzle but he's come so far in a short time, the play therapist said today how he has a personality now and plays etc when she first met him she said he just stood there refused to play smile engage :thumbup:


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## alibaba24

lynne1983 said:


> Wee update from us
> 
> Things with ds current nursery have taken a huge nose dive since going back after the Xmas break I've been phoned just about every session to go and get him (his sessions btw are 2 hours) Thursday they said they couldn't stop him running about when I went up he was sitting at the audio player listing to a story so I stayed a good 40 mins he went onto the book section then snack table but today really got me 10 mins after I dropped him off I was phoned again to go get him said he was screaming shouting throwing chairs so when I went I watched from the window no one could see me couldn't hear him or see him at 1st then as he was passing a chair he pulled the back of it so it would fall no one reacted to this it was completely ignored I buzzed the door to get in. The nursery manager starting repeating the same crap she said on the phone at this point junior pulled another chair over so I went over to him to tell him no she said I can stay but I was to pisst off to stay so just went home. I just feel they don't want him there he doesn't fit in with there snobby wee nursery and there not even trying and ive decided I'm not sending him back whilst we wait to hear if he's got the place at the other nursery about 2 weeks away
> we've been to visit the new nursery and it's absolutely fantastic really impressed with it and the staff I just really hope he gets that space xx


what nursery is he at? x


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## Reid

alibaba24 said:


> lynne1983 said:
> 
> 
> Wee update from us
> 
> Things with ds current nursery have taken a huge nose dive since going back after the Xmas break I've been phoned just about every session to go and get him (his sessions btw are 2 hours) Thursday they said they couldn't stop him running about when I went up he was sitting at the audio player listing to a story so I stayed a good 40 mins he went onto the book section then snack table but today really got me 10 mins after I dropped him off I was phoned again to go get him said he was screaming shouting throwing chairs so when I went I watched from the window no one could see me couldn't hear him or see him at 1st then as he was passing a chair he pulled the back of it so it would fall no one reacted to this it was completely ignored I buzzed the door to get in. The nursery manager starting repeating the same crap she said on the phone at this point junior pulled another chair over so I went over to him to tell him no she said I can stay but I was to pisst off to stay so just went home. I just feel they don't want him there he doesn't fit in with there snobby wee nursery and there not even trying and ive decided I'm not sending him back whilst we wait to hear if he's got the place at the other nursery about 2 weeks away
> we've been to visit the new nursery and it's absolutely fantastic really impressed with it and the staff I just really hope he gets that space xx
> 
> 
> what nursery is he at? xClick to expand...

It's kilbarchan nursery's (in Scotland) x


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## alibaba24

lynne1983 said:


> alibaba24 said:
> 
> 
> 
> 
> 
> lynne1983 said:
> 
> 
> Wee update from us
> 
> Things with ds current nursery have taken a huge nose dive since going back after the Xmas break I've been phoned just about every session to go and get him (his sessions btw are 2 hours) Thursday they said they couldn't stop him running about when I went up he was sitting at the audio player listing to a story so I stayed a good 40 mins he went onto the book section then snack table but today really got me 10 mins after I dropped him off I was phoned again to go get him said he was screaming shouting throwing chairs so when I went I watched from the window no one could see me couldn't hear him or see him at 1st then as he was passing a chair he pulled the back of it so it would fall no one reacted to this it was completely ignored I buzzed the door to get in. The nursery manager starting repeating the same crap she said on the phone at this point junior pulled another chair over so I went over to him to tell him no she said I can stay but I was to pisst off to stay so just went home. I just feel they don't want him there he doesn't fit in with there snobby wee nursery and there not even trying and ive decided I'm not sending him back whilst we wait to hear if he's got the place at the other nursery about 2 weeks away
> we've been to visit the new nursery and it's absolutely fantastic really impressed with it and the staff I just really hope he gets that space xx
> 
> 
> what nursery is he at? xClick to expand...
> 
> It's kilbarchan nursery's (in Scotland) xClick to expand...

my friend lives there! her wee boy goes to hollybush. to be honest after 10 minutes is a complete joke! I would actually complain about the fact they have not even gave him a chance! my daughter used to throw things in Nursery like properly throw things one time a toy landed on top of the fridge :wacko:

never once have the nursery suggested they cant cope with her. only referring her for speech therapy. and also deferring her from starting school this a completely mainstream nursery too x


----------



## Reid

alibaba24 said:


> lynne1983 said:
> 
> 
> 
> 
> 
> alibaba24 said:
> 
> 
> 
> 
> 
> lynne1983 said:
> 
> 
> Wee update from us
> 
> Things with ds current nursery have taken a huge nose dive since going back after the Xmas break I've been phoned just about every session to go and get him (his sessions btw are 2 hours) Thursday they said they couldn't stop him running about when I went up he was sitting at the audio player listing to a story so I stayed a good 40 mins he went onto the book section then snack table but today really got me 10 mins after I dropped him off I was phoned again to go get him said he was screaming shouting throwing chairs so when I went I watched from the window no one could see me couldn't hear him or see him at 1st then as he was passing a chair he pulled the back of it so it would fall no one reacted to this it was completely ignored I buzzed the door to get in. The nursery manager starting repeating the same crap she said on the phone at this point junior pulled another chair over so I went over to him to tell him no she said I can stay but I was to pisst off to stay so just went home. I just feel they don't want him there he doesn't fit in with there snobby wee nursery and there not even trying and ive decided I'm not sending him back whilst we wait to hear if he's got the place at the other nursery about 2 weeks away
> we've been to visit the new nursery and it's absolutely fantastic really impressed with it and the staff I just really hope he gets that space xx
> 
> 
> what nursery is he at? xClick to expand...
> 
> It's kilbarchan nursery's (in Scotland) xClick to expand...
> 
> my friend lives there! her wee boy goes to hollybush. to be honest after 10 minutes is a complete joke! I would actually complain about the fact they have not even gave him a chance! my daughter used to throw things in Nursery like properly throw things one time a toy landed on top of the fridge :wacko:
> 
> never once have the nursery suggested they cant cope with her. only referring her for speech therapy. and also deferring her from starting school this a completely mainstream nursery too xClick to expand...

Ha small world &#128522;and my boy got the place I just found out today he's going to a nursery that will actually support and encourage him I'm soooo chuffed
I got in touch with the women I met the other week when we had the meeting about putting him forward now I'm not sure what her job title is I just no she was the one putting paper work in for it and works for the local council 
I filled her in on the last few weeks at nursery and then about tue and told her the nursery manager said I'd have to stay for ds sessions she was very shocked and not in the least but happy about it she said they shouldn't have been phoning me and I should not have to stay for his sessions they should have been phoning her so that she could implement additional support for my son and even though my son's not going back to the nursery she will be making a visit to discuss what I've told her xx


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## Thurinius

Fab news Lynn. So glad your boy got the nursery place


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## Reid

Thurinius said:


> Fab news Lynn. So glad your boy got the nursery place

Thanx I'm delighted feels like we're moving in the right direction now :) xx


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## alibaba24

brilliant news you must be relieved x


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## sequeena

:dance: that's awesome!


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## Reid

Yeah its great I'm looking forward to going up there next week and spending some time seeing how things work after such a rotten experience with the 1st nursery xx


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## RachA

Yay that's great news Lynne :) 


Esther has been signed off from her out of school speech therapy now. She's still having it in school though. 
We've got to write a statement for her as she's got her 6months review for her Statement already. I can't believe it's come round already. It's not easy knowing what to say though as she has improved but does still need full time help at school.


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## annanouska

Hi everyone. We've been q bit bonkers so not had to,e for a good catch up. Marcus had a cold with quite q high temp the other week. He went crazy fitting and was rally poorly :wacko: I took him to his last play therapy Wednesday and he just collapsed on me or had a drop seizure don't rally know. The gp wouldnt see him and walk in ent us us to a and e complete waste. Think it was the tail end of his illness he seems quit fine now.

He seems to be sleeping 12hrs at a night and still napping 1/2 of a day. I'm not trying to brag is that a bit excessive? I'm so used to him not sleeping this seems strange been doing it a few weeks.

We have a consultant today, I'm sort of excited and nervous as I'm hoping to get more answers on the brain blobs but deep down I'm thinking it's going to be a pointless appointment of just meeting him etc. I've nev seen this consultant I think she's the head of paediatric neurology in Manchester childrens she only runs this clinic once a month.

You know what it's like u get all these appointments and think they will be really good and useful and most are just pointless :dohh:

I had a meeting with nursery too they are applying for TIS1 funding to see if he can get support at nursery but she said she doesn't think he will and doubts he will get a "statement" / what's the new name ehcp or something for school? I can't understand how he will function without one at school time. I, not bothered for nursery it's two days and I do a lot with him at home but I just worry for school


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## Reid

annanouska that sounds horrible glad he's better now though.
Hope everything went well at consultant today and you got some answers.
We have to see the pedestrian later this week don't really no what to expect from it another hearing test in march to
On a plus he done really really well his 1st day of nursery last week I spent a couple of hours with him then went into the staff room they didn't come and get me at all just popped in every so often to tell me what he was doing and I was soo proud of him
He let his key worker take him to the toilet and used it sat and eat his lunch with all the other kids and got a play in there soft play room which was next to the staff room so I could hear him giggle away so wed will be his 1st day himself but they took my mobile number and will text me to let me know how he go's which I thought was really good xx


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## annanouska

Aw sounds such a nice nursery :thumbup:

I'm so fed up about the appointment. We were last in they were hour twenty behind which I understand but it was so disorganised. She hadn't seen his scan or EEG results and not read his file. I had to repeat everything then she got cross I coildnt remember all details from over two years ago ( specific timescales etc). I've detailed them all befor but by now it's not exactly fresh in my mind. We're there for quota long time but I don't think we gained anything really. We will be referred to a geneticist as apparently the genetics he's running atm are just standard genetics :shrug: saw all his dots, he has a few but they are quite small. I coildnt get answers why they are there they don't know they want to see if it's a condition that will get worse or not. Then was like well he's doing so well atm. In one braht they were happy with his meds in the next breath they may look at others as and when. Then she seemed to be hinting more at the autism type concerns then said he was babbling nicely in his language etc. it just seemed a jumble I've gained nothing. Know nothing! He sees the usual one in about a month so will prob get clarity then :shrug:

Sorry for just ranting I nt straight to work after on,y just got in x


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## Reid

Oh that's very disappointing and unprofessional in my opinion I mean I know there obviously busy but she could have took 5 mins to read through the file before you went in and yeah hopefully his usual one will give you some answers just annoying you have to wait again for it.
My los 1st day at nursery himself today I'm just on my way to work so OH is getting him ready and putting him on the bus he just text to say he's kicking off my boy ain't a morning person at all lol x


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## Thurinius

Wondering your take on this. You'll probably all remember the horrible time my son had at his first nursery. At the time we didn't know he was asd but they picked it up in his first week and bullied me into removing him. I complained and so forth. And had let it go as I'd got nowhere when the equality commission who'd I'd consulted re my ds's treatment, got in touch to see how it was going.
When I told them they said they could write a letter to the school pointing out they were in breach of the equality act but that quite often schools don't reply. I said yeah and thought nothing of it.
Now the equality commission has been back in touch saying the council's legal consul has contacted them.
Do you think it's a negative thing they've got lawyers involved or a positive thing. I can't make it out. The last action by the school was from the governor who claimed all kinds of lies, such as I'd been given many other options other than removing my son from the nursery. And I've never had the written apology they promised me back in September.
I don't know.
Wouldn't it be a dream though if they admitted they'd breached the act and actually said sorry. Think that is a dream though.


----------



## Reid

Thurinius said:


> Wondering your take on this. You'll probably all remember the horrible time my son had at his first nursery. At the time we didn't know he was asd but they picked it up in his first week and bullied me into removing him. I complained and so forth. And had let it go as I'd got nowhere when the equality commission who'd I'd consulted re my ds's treatment, got in touch to see how it was going.
> When I told them they said they could write a letter to the school pointing out they were in breach of the equality act but that quite often schools don't reply. I said yeah and thought nothing of it.
> Now the equality commission has been back in touch saying the council's legal consul has contacted them.
> Do you think it's a negative thing they've got lawyers involved or a positive thing. I can't make it out. The last action by the school was from the governor who claimed all kinds of lies, such as I'd been given many other options other than removing my son from the nursery. And I've never had the written apology they promised me back in September.
> I don't know.
> Wouldn't it be a dream though if they admitted they'd breached the act and actually said sorry. Think that is a dream though.

Hey &#128522; yeah I remember some of your posts about this 
I'd say it's a good thing they bloody well lied and we're found out and if there telling lies on this what else are they lying about.
In the end up we 2 had a bad experience with my son's nursery kind of similar to yourself I feel they just wanted him out every session which were only 2 hours 3 times a week so 6 hours when he entitled to 16 hours. They were constantly phoning me to get him after 30 mins asked me not to bring him to Halloween and christmas party's but the final straw came when they phoned me after 10 mins I hadn't even took my jacket off and they completely exsagurated his behaviour and I caught them out they hadn't realised I was waiting at the door so seen what he doing they told me he was throwing chairs about her words he was in fact pulling the back of the chair so it would fall on the floor big difference anyway once they let me in the manager told me I had to stay for every session from now on I wasn't very happy about the whole situation and we were waiting to see if he'd got the place in the new nursery which was 2 weeks away so I decided I was pulling him out and got in touch with the lady who works with the council (don't no her job title) she'd been to the meeting when we were trying to push for this new nursery I wanted to keep myself right with pulling him out so when I told her why she was not in the least bit happy she said they weren't following the procedures they should have been phoning her as she could implement additional support him it was then she told me he had the place so it was ok that I wasn't sending him but she would be going to discuss what I told her with them 

So now my little boy has started his new nursery I spent a couple of days there and there fantastic I can't believe the difference in the 2 smaller classes more staff 
the nursery bus picked him up at 8:45 amd brought him home at 3:30 they send a wee book home each session to tell me what he's been playing with what's he's eaten when he's went to the toilet. 
He has 2 full days just now come august he can have another day or 2 and they don't close for holidays so his routines kept consistent &#128522;
oh my that's a book I've typed sorry lol xx


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## Thurinius

So glad you've got a good nursery now lynn. We have too and the difference is startling. In the old nursery they complained (after three afternoons) that he didn't join in with the songs and actions.
Well yesterday after eight afternoons my son was taking part in Chinese dance! His teacher always has a nice word and tells me he's been good and joining in with this or that. He's already earned himself two stickers for being helpful. And I just feel so much happier dropping him off because I know they care about him and will look after him. 
And actually at the new nursery the ratio of teacher child is the same as the old, they just give a d*mn for his safety etc!

Talking it over with my OH I see the lawyering up as a good thing. Because now its no longer an internal school matter they've had to go to the council for advice so it's flagged up their treatment of special needs pupils. Even if they deny everything it puts them under a spotlight and means they are going to be extra careful how they treat send children in future. So I'm hoping I've maybe made a difference to some children by pushing this.
Though I keep saying I'd let it go I just can't let go this one thing:
That nursery teacher spotted a child who needed extra help, who clearly was autistic or with developmental needs. Rather than examining what help he would need, rather than assisting him in settling in. She decided that he was a nuisance and should leave.
That is unacceptable in this day and age. Especially like you say Lynn, there are so many good people with long titles at county level there to assist you and we've had so much help at that level.


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## Reid

Sounds just exactly the same as us and with the way things are now being dealt with they sound like they weren't following procedures and you have stopped this happening to other kids. Aww doesn't it make a massive difference when you no your child's happy and getting the care and attention they deserve. He had a fantastic 1st day said he was playing with the sand for outdoors in the soft play ext really lovely getting the wee . report book home each time to with what's he's done I actually no what hrs doing at nursery now
At the pedestrian today they put him forward to see if he dose have autism which I was expecting 
In the 6 months since his last appointment he's came on so much with his general behaviour and toilet trained to which I thought would have been impossible he's an absolute super star &#127775;&#127775; xx


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## sequeena

that is a good thing about the lawyers hopefully everything they lied about will come out I think it's disgusting how your lo was treated. 

Lynne that's wonderful news I'm so pleased he's doing well good luck with the testing xx

Thomas had his last speech therapy today he only got 4 sessions Instead of 5. We had a tiny break through though he said kay whilst holding a piece of cake :thumbup:

I'm at my aunts now babysitting my cousins 5 year old whilst she takes her 2 year old to the doctor. Thomas loves his cousin and hasn't left him alone he keeps laying on him or stroking his hair or trying to get his face as Close to his etc bless my.cousin he's very tolerant of Thomas' spd


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## Reid

sequeena said:


> that is a good thing about the lawyers hopefully everything they lied about will come out I think it's disgusting how your lo was treated.
> 
> Lynne that's wonderful news I'm so pleased he's doing well good luck with the testing xx
> 
> Thomas had his last speech therapy today he only got 4 sessions Instead of 5. We had a tiny break through though he said kay whilst holding a piece of cake :thumbup:
> 
> I'm at my aunts now babysitting my cousins 5 year old whilst she takes her 2 year old to the doctor. Thomas loves his cousin and hasn't left him alone he keeps laying on him or stroking his hair or trying to get his face as Close to his etc bless my.cousin he's very tolerant of Thomas' spd

Thanx xx

And well done Thomas my son's very behind with his speech so I no how massive a new word is &#128518;xx


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## annanouska

We have a ne word and action and it's driving me mad!! Hubby and little one wqtching Sesame Street...now he says "cookie" in this weird low deep monster tone said more like "cooookey" whilst cramming food of any description into his mouth :dohh: some eats toast then exclaims "cooooookey"'and Rams it in like the Cookie Monster :wacko:


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## Reid

annanouska said:


> We have a ne word and action and it's driving me mad!! Hubby and little one wqtching Sesame Street...now he says "cookie" in this weird low deep monster tone said more like "cooookey" whilst cramming food of any description into his mouth :dohh: some eats toast then exclaims "cooooookey"'and Rams it in like the Cookie Monster :wacko:

I shouldn't but that made me lol wee cutie x


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## sequeena

Ladies it's been a long time how are things?

We're still no closer to getting T a statement though it has gone to panel.

Everything else is the same though.


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## bumpin2012

we're still in Limbo.

Autism assessment in Aug/September. Awaiting psychology appointment and developmental followup.

Genetic screening was all clear. Doing well with daycare, but still little progress with speech development. He's getting tubes placed in his ears in 2 weeks (finally)

Hopefully T gets his statement status addressed soon Sequeena


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## Reid

Hello &#128522; 
We've had some fantastic progress (touch wood) junior's in a steady sleeping pattern now and actually hands me the toothbrush to brush his teeth before bed then goes straight to the bed no running away no screaming no in and out of bed for hours. I bought a relaxation cd which I put every night when he's going to bed I did use the TV which I think was to stimulating for him ì think the new nursery has helped with this to which is another huge improvement in our life's just now to see my child run to the nursery bus because he loves going there has melted my heart I'm due my 1st 1 to 1 catch up with his key worker on the 9th 
they send a diary home each day to say what he's doing and he's settled in really well.
He's still having mega meltdowns when I bring him in the house from being outside someone on another thread suggested a calm down box with sensory type toys so going to see what kind of things I cam put In it 
how is Thomas doing with his sleeping just now xx


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## RachA

sequeena said:


> Ladies it's been a long time how are things?
> 
> We're still no closer to getting T a statement though it has gone to panel.
> 
> Everything else is the same though.

How long has it been since you received written confirmation that they were assessing him for a statement? 
I know that with Esther everyone concerned was amazed that she had the statement in place just as she was starting school as that is pretty unusual-most are granted once they have actually been in school a little while.


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## sequeena

It's been almost 6 months from written confirmation x

We've decided T won't be going until he has one he just wouldn't cope :(

Ladies you're all busy. We have a few appointments here and there but not heard back from genetics yet. Paediatrician should be sending a letter soon.

Sleep is awful! I give up completely I feel such a failure about it.

Bumpin when does he get the grommets?

Lynne so glad things are going well aside from the meltdowns. I feel you!! at my nephews first birthday party thomas had 7 meltdowns in 1 hour. It's so exhausting.


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## RachA

It's nice to hear the updates :) 

Esther is doing well. She's really settled into school well. She does still have issues with personal space at the moment-as in other children are moving away from her because she's too close but she just doesn't get it and then follows them and consequently annoys them. 
She's been in school since Sept and I'd say the 1:1 support and the daily speech therapy is really helping. She can now recognise the numbers 1-10 and knows about 10 of her phonics letters. She can write E S and T although in very big handwriting. 
Her sentances are coming along well too-she will now put linking words like 'is' into a sentance. Her sentances are still very stilted though and we quite often don't know what she is saying. 
She is obviously still massively behind her peers-we had parents evening last week and all the other children received a statement based on national expectations-we didn't because she isn't even working at the first level!!! 
But she enjoys school and lots of the other children say hi to her even though she won't talk back to them. 
She's also getting ever so slightly easier to deal with because she understands what we are saying now plus she also has more words to express herself rather than just screaming. 

We are in the process of seeing if there is any help available during the summer holidays as she'll go from daily SALT to none for 6 weeks and we're worried that she'll slip back a lot.


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## RachA

sequeena said:


> It's been almost 6 months from written confirmation x
> 
> We've decided T won't be going until he has one he just wouldn't cope :(
> 
> Ladies you're all busy. We have a few appointments here and there but not heard back from genetics yet. Paediatrician should be sending a letter soon.
> 
> Sleep is awful! I give up completely I feel such a failure about it.
> 
> Bumpin when does he get the grommets?
> 
> Lynne so glad things are going well aside from the meltdowns. I feel you!! at my nephews first birthday party thomas had 7 meltdowns in 1 hour. It's so exhausting.

Hopefully you'll hear something soon. I assume you've been chasing it up with them. I think ours took somewhere between 6 and 7 months in the end and we bypassed the panel which speeded things up slightly. When us T due to start school?


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## bumpin2012

April 10th! I've only been asking for 16 months... Lol. 

Ice given up on sleep here as well Sequeena. G is up almost nightly from 12-4/5. Hubby and I are debating moving him to the basement bedroom, so that we can at least get some sleep. JB generally sleeps through his noise at the very least.

Rach- glad to hear Esther is doing well with school. G isn't quite 3, but I'm already anxious about him starting. I'm debating starting him a year late, so he would be starting closer to his developmental age


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## Thurinius

My son is very much enjoying his new nursery. They keep asking whether he enjoys singing and dancing at home - he does not! I'm not allowed to sing at all. But he enjoys it at nursery. We have his inclusion officer assessing him this Wednesday and I am meeting them after to discuss.
Annoyingly after Easter the nursery say they have no space for his speech therapist to come and see him. Which I find quite frustrating because he is getting so much out of it - he even sang happy birthday to his grandad yesterday.
His old horrible nursery had their lawyer contact me, they have changed their wording for the governors letter which claimed I was given plenty of choices rather than taking him out (I wasn't)
Apparently now this is a 'miscommunication'?!?
Anyway I'm out of the time limit for a tribunal and the school has sort of apologised - for the distress caused me rather than their actions and put more stuff in place to stop it happening.
Think I might copy all the paperwork and send to my MP. That way they will know they are being watched and thus never dare treat another child like that!


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## Reid

Thurinius said:


> My son is very much enjoying his new nursery. They keep asking whether he enjoys singing and dancing at home - he does not! I'm not allowed to sing at all. But he enjoys it at nursery. We have his inclusion officer assessing him this Wednesday and I am meeting them after to discuss.
> Annoyingly after Easter the nursery say they have no space for his speech therapist to come and see him. Which I find quite frustrating because he is getting so much out of it - he even sang happy birthday to his grandad yesterday.
> His old horrible nursery had their lawyer contact me, they have changed their wording for the governors letter which claimed I was given plenty of choices rather than taking him out (I wasn't)
> Apparently now this is a 'miscommunication'?!?
> Anyway I'm out of the time limit for a tribunal and the school has sort of apologised - for the distress caused me rather than their actions and put more stuff in place to stop it happening.
> Think I might copy all the paperwork and send to my MP. That way they will know they are being watched and thus never dare treat another child like that!

Aww great to hear he's enjoying the new nursery our boys were moved about the same time and I remember reading your posts on it. Xx


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## Thurinius

lynne1983 said:


> Thurinius said:
> 
> 
> My son is very much enjoying his new nursery. They keep asking whether he enjoys singing and dancing at home - he does not! I'm not allowed to sing at all. But he enjoys it at nursery. We have his inclusion officer assessing him this Wednesday and I am meeting them after to discuss.
> Annoyingly after Easter the nursery say they have no space for his speech therapist to come and see him. Which I find quite frustrating because he is getting so much out of it - he even sang happy birthday to his grandad yesterday.
> His old horrible nursery had their lawyer contact me, they have changed their wording for the governors letter which claimed I was given plenty of choices rather than taking him out (I wasn't)
> Apparently now this is a 'miscommunication'?!?
> Anyway I'm out of the time limit for a tribunal and the school has sort of apologised - for the distress caused me rather than their actions and put more stuff in place to stop it happening.
> Think I might copy all the paperwork and send to my MP. That way they will know they are being watched and thus never dare treat another child like that!
> 
> Aww great to hear he's enjoying the new nursery our boys were moved about the same time and I remember reading your posts on it. XxClick to expand...


We've only had one meltdown so far, over a gate (nope no idea). My poor mum was struggling with him screaming and wanting to run off with his little brother in the buggy too.
The staff came out and helped get him in. My mum wondered if she should stay because he was still crying but they said she could go.

She got home and the phone rang and she assumed it was the nursery asking her to pick him up. But no it was them reassuring her he was fine and settled and not to worry. :) 

Now if only I'd sent him to that nursery in the first place!


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## Reid

Thurinius said:


> lynne1983 said:
> 
> 
> 
> 
> 
> Thurinius said:
> 
> 
> My son is very much enjoying his new nursery. They keep asking whether he enjoys singing and dancing at home - he does not! I'm not allowed to sing at all. But he enjoys it at nursery. We have his inclusion officer assessing him this Wednesday and I am meeting them after to discuss.
> Annoyingly after Easter the nursery say they have no space for his speech therapist to come and see him. Which I find quite frustrating because he is getting so much out of it - he even sang happy birthday to his grandad yesterday.
> His old horrible nursery had their lawyer contact me, they have changed their wording for the governors letter which claimed I was given plenty of choices rather than taking him out (I wasn't)
> Apparently now this is a 'miscommunication'?!?
> Anyway I'm out of the time limit for a tribunal and the school has sort of apologised - for the distress caused me rather than their actions and put more stuff in place to stop it happening.
> Think I might copy all the paperwork and send to my MP. That way they will know they are being watched and thus never dare treat another child like that!
> 
> Aww great to hear he's enjoying the new nursery our boys were moved about the same time and I remember reading your posts on it. XxClick to expand...
> 
> 
> We've only had one meltdown so far, over a gate (nope no idea). My poor mum was struggling with him screaming and wanting to run off with his little brother in the buggy too.
> The staff came out and helped get him in. My mum wondered if she should stay because he was still crying but they said she could go.
> 
> She got home and the phone rang and she assumed it was the nursery asking her to pick him up. But no it was them reassuring her he was fine and settled and not to worry. :)
> 
> Now if only I'd sent him to that nursery in the first place!Click to expand...

Just shows you when someone puts a little effort in it makes all the difference. My wee 1s been going for over 2 months now bus picks him up at 8.40 he's in nursery just after 9 leaves at 3 and is home at 3:30 he loves the bus runs to it when he sees it now the old nursery couldn't even managed a bloody hour such a difference xx


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## RachA

The people supporting definitely makes a difference in the children. 
Really good that both of them are more settled.


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## Thurinius

So my 4 year old was assessed at nursery by his inclusion caseworker or whatever her title is. The last time she saw him was 6 months ago.

She said she could see he was very happy and settled and that his speech had come on. However with her tick boxes she couldn't see any progress at all in him otherwise.
She was very up front that she can only tick off what she's seen and that's why he might score so low. I gave her some examples of imaginative play at him.

But it has got me down because I thought he was doing so well and had come on so much.


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## RachA

Thurinius said:


> So my 4 year old was assessed at nursery by his inclusion caseworker or whatever her title is. The last time she saw him was 6 months ago.
> 
> She said she could see he was very happy and settled and that his speech had come on. However with her tick boxes she couldn't see any progress at all in him otherwise.
> She was very up front that she can only tick off what she's seen and that's why he might score so low. I gave her some examples of imaginative play at him.
> 
> But it has got me down because I thought he was doing so well and had come on so much.

That's quite often what happens so down get too down about it. Esther used to do things for her preschool key worker but she'd never do it for anyone else (including me) so they couldn't tick the box. So frustrating for us though as we know they do more than they show.


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## alibaba24

Thurinius said:


> So my 4 year old was assessed at nursery by his inclusion caseworker or whatever her title is. The last time she saw him was 6 months ago.
> 
> She said she could see he was very happy and settled and that his speech had come on. However with her tick boxes she couldn't see any progress at all in him otherwise.
> She was very up front that she can only tick off what she's seen and that's why he might score so low. I gave her some examples of imaginative play at him.
> 
> But it has got me down because I thought he was doing so well and had come on so much.

iv stopped caring about these tick box type assesments. I feel like they are going to be so inaccurate. my daughters came back her development was all on the 1st centile. theres just no way only because of the 40 mins or so the doc saw her. try not to be down and just enjoy your son. I know its easier said than done .


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## sequeena

Remember girls. Slow and steady progress. Our kids are doing amazing.

rach Thomas will be 4 in august so ideally he will start school in September but whether that will happen I don't know. I've speaking to a lot of people about it, including our postman funnily enough (his daughter is autistic) and he was telling me that the school pays for a taxi etc. I just have so much anxiety around this. I think because I will have to let him go and of course no one can look after him better than I can. Whatever school he goes to it will he one I can't get to easily simply due to my location and the fact I don't drive. I hate not having him close but I won't home school for that reason. That's our last resort.

Thomas is completely obsessed with YouTube recently. I feel pretty awful about it. He has so many toys. Just yesterday we bought him a fire station Wendy house but after the initial excitement he just doesn't want to know.


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## Thurinius

Thanks guys.
On the upside his complete lack of progress means they are going to apply for him to have a helper in reception year.

Reception scares me, he find nursery too noisy and there's only 18 odd kids so what will he be like with 30.
Though his nursery teacher said he will probably enjoy the more teacher led activities.

Sequeena don't worry about you time, it'll pass like most obsessions. At least there's something good on you tube. My son is obsessed with the tiny pop channel. I hate it. I hate every damn programme (except peg and cat. I like peg and cat).
Because I hate it so much I've told him the channel only starts at 3 pm. It is actually on all day. Feel tiny bit guilty. But not enough to let him on on the secret.


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## annanouska

:hugs: so glad I logged on just to see that sequeena!! ,at hs is obsessed with you tube, the unboxing of peppa pig toys, kinder eggs and the current fave Japanese nursery rhymes?! He's akso obsessed with Wallace and gromitt so funny just comes out with more cheese grommit?! Things are stable atm we upped his meds and he's been much better but fit last night and today but he is unwell often throws him off course x


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## Reid

Girls on you tube look up "little baby bum" my son loves it.
It's all songs and nursery rhymes really great colourful fun videos xx


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## Starry Night

:hi:

Mind if I join? :flower: A few weeks back my son was diagnosed with ASD. We're still waiting for the official results to be mailed to us so don't have a specific diagnosis but the Child Development Doctor told us his ADOS test showed him to be "closer to the middle". Whatever that means.

He is 3 (will be 4 in July) and has some verbal ability but sounds like he has more than he actually does because he scripts movie quotes all the time. The specialist said they don't count scripting as true communication (that surprised me) but that he does have some spontaneous one-word and two-word phrases. I can usually figure out what he wants and means but he is unable to hold a conversation or tell me when he's hurt or why he's upset.

Just found out today that his Speech Therapy starts in 2 weeks. :happydance: He was assessed back in November (before we even thought autism was a problem) so I had to call and beg to get bumped up the waiting list after getting the diagnosis. The therapist complained to me about how busy they were right now but I still got my appointment. :mrgreen: 

He's also going for an overall assessment. There is a program called the STARS program that all 3 year olds in the community are invited to attend to get assessed in all areas of development. He has the diagnosis already but when I called they said it would be a good way for me to get to know the local support.

ANYWAYS.....my son is my oldest and I have a 10 month old daughter who seems to be developing normally thus far. She and my son are best friends.:cloud9: I'm 32 and my husband is 34. We've been married for about 6 1/2 years.


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## sequeena

Girls.... I cannot believe I am finally writing this.... Thomas has a statement... and they recommended a school.... He will start attending an SN unit in September. .. I can't quite believe it. This has been our biggest hurdle for months. He will be 4 when he starts going to school finally.

Hi starry night welcome! It seems our los have similar issues though my son is not autistic. Good luck with the therapy xx


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## sequeena

Thanks for explaining! Bless him he sounds lovely :) good luck for your scan! Our son is due to start genetic testing soon (had genetic counselling in january) as they think Thomas has a genetic condition too. I'm no doctor but with lots of research I think he may have 18q deletion syndrome.


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## Reid

Sequeena that's great thomas will be starting school. What is statement exactly? I've seen it on quite a few threads but don't really no much about it.
Hi to both newbies and welcome.

I had a catch up with my son's nursery today really great feed back on how he's settled in. He had his 1st outing yesterday and done great followed instructions and no kick offs when leaving the park they also had a wee birthday party for him showed me the pictures of his day. They said he's socialising better now taking a liking to 2 wee boys they seem to like play together . Speech therapist should be starting to work with him next week now she's back. Really delighted with how it's all going since he's started this nursery.
He's still throwing the mega the hissy today's was because he couldn't get his papas garden hose and he really went off on 1 xc


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## sequeena

Aw bless he sounds like he's doing really well :)

A statement or rather a educational health care plan as it's now called is a legal document that sets out what my son's problems are, what he needs, and what the school must provide to help him.


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## annanouska

Hi new mummies :hugs:...,regarding the scripting or echolalia, my son did and still does a lot of this but he has got a fair bit of normal language with it too. I think of it as a positive as it shows physically capable of speech :thumbup:

Such good news about the EHCP sequeena :happydance: I don't know when or if ours will be started, nursery observe his seizures a fair bit so surly he will need something for that ?

He's quite chatty these days but still very disordered and does things a competely round about way!


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## Reid

sequeena said:


> Aw bless he sounds like he's doing really well :)
> 
> A statement or rather a educational health care plan as it's now called is a legal document that sets out what my son's problems are, what he needs, and what the school must provide to help him.

Aww he is bar these tantrums he's doing great this new nursery has really been amazing in helping him move forward. Ah great that's brill then for Thomas you no his needs will be met then &#9786;.
Have you had any progress on the sleeping xx


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## Starry Night

Emma - Hi! Your guy sounds adorable. I'm picturing him making you chase him with his little cane. ha ha. Kids are still kids no matter what and can be fun and drive us crazy at the same time. The kidney cysts sound stressful but I guess you can cross that bridge when you get there. One step at a time.

anna - I am thankful for some scripting as it helps us know what he wants. We have taught him to memorize some key phrases. He is still tough to understand though. Most people have to ask us what he is saying and babble is still his default. Yesterday he was having a hard time and all the words he normally could say on his own were coming out all slurred. I could tell that was upsetting him. I'm hoping speech therapy can help with his enunciation as well.

sequeena -I'm glad things are getting sorted out with Thomas' school. :) 

lynne - glad to hear your son is settling into nursery and that he's making some friends.


afm - stressing a little. The province of Manitoba where I live has a government-funded ABA program BUT you have to get into the program before the age of 5 or else you can't get in at all. It's so ridiculous. Our son didn't get referred for testing until his 3rd birthday, just was diagnosed a few weeks ago and turns 4 in a few weeks. The wait is so long he probably will age out of the program before he's off the waiting list. IF he gets in, he will be able to graduate to the school-age program. I think it's so silly that the school-age program won't take in those who were diagnosed later. You HAVE to go through the preschool program first. And private ABA therapy is $100 a session. Not sure DH's work benefits will cover it. And if so, will only cover $1000 a year. So yeah, not much.

There is a RDI therapy I can apply for that is free for children with low verbal skills. I think my son is over-qualified for it already but no harm in trying. It's a 2 to 3 year program. My DH and I are attending the fall seminar session we have to take before applying. We technically could have squeezed into the spring session (they had exactly 2 spaces left) but we found out about it 3 days before it started and it was during the day so not enough time to make arrangements for the kids. Though DHs' work is being AWESOME. They were willing to give him the time off because "family comes first".


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## alibaba24

my daughter also loves these youtube videos..... just why?! :shrug:

I am glad to see apparently alot of kids are into them

as much as they irritate me the one good thing I Can see from them is that they might benefit her language development because the people are speaking the actions so my daughter can put the word to the action....

still I do not like them :rofl:


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## sequeena

Egg surprise openings are apparently the most popular things on YouTube! !


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## alibaba24

sequeena said:


> Egg surprise openings are apparently the most popular things on YouTube! !

yes the eggs!! ugh! :dohh:


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## sequeena

Sorry Lynne I didn't see your post. No the sleeping is still awful. I can't get him to bed at a decent time he just isn't tired at all. lots of waking too still. However he has been dummy free for 4 days now :happydance:


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## Starry Night

I've never heard of those videos until I saw people talking about them on this site. I still haven't looked them up. My children are thus far totally unaware of them and I aim to keep it that way for as long as possible. My son's closest friends live out in boonie-land with no internet so he won't be finding out about it from them. ha ha Few more years until school yet too.


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## RachA

alibaba24 said:


> sequeena said:
> 
> 
> Egg surprise openings are apparently the most popular things on YouTube! !
> 
> yes the eggs!! ugh! :dohh:Click to expand...

I don't get why they are so taken with them. Esther loves them too (mind you so does my 7 year old!) 


Welcome to the newbies :) 

So good to hear about the statement Sequeena-you can breathe for a bit now. 


Esther's just been reassessed for her statement and they are keeping it the same which is a relief. We are however trying to look into what we are going to do with her over the summer holidays. She currently gets SALT every school day so she'll end up with a 6 week break with no SALT. I think she'll forget stuff over that period so am trying to work out what we can do.


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## sequeena

Does reassessment happen every now and again or only if something changes? I'm glad Esthers is the same :)

How does this sound? I've not seen the statement yet so it may not be set in stone but their report said they advised 6 hours of therapy a year. That's 12 weeks if it's half hour a.session. It doesn't sound much to me but is that normal?


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## RachA

As far as I'm aware they reassess every 6 months until they are 5 years and then it's every 12 months. 

It depends on what else the statement says-ours states that Esther needs 27 hours 1:1 support at school. It also says things like: she needs SALT on a weekly basis. 

You can disagree with what they've given you-they will send you the draft statement to sign. Go through it several times before you sign it and think about it lots. There is a section for you to say that you don't agree with it. The first couple of times I read it I totally missed the 27hours part!


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## Reid

Why do people say stupid things....I will not be held responsible for the next person that says oh once he's talking you'll wish he'd shut up.. well no I won't I long to have a conversation with my son for him to say mummy I love you.
To make it worse it came from someone who's child was speech delayed to someone I thought would understand &#128545;

That's great RachA can imagine that would be a weight off you're mind xx


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## RachA

People just don't think. And the trouble is that unless you are still living with it every day then you forget how you felt as time goes on. That's probably how she feels now that her child is talking and doesn't understand how different it is for you.


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## bumpin2012

Hi starry night :wave:

Sequeena, starting school! Eeep! What testing will they do? They did a genetic blood panel on G, which showed nothing. Is the 18q deletion something that they can test for? I've never even heard of it. They were using G for fragile X, which came up negative.

Tubes went in on Friday and he's doing REALLY well. He chattered non stop from about 3am until 7pm Saturday. He's also slept through the night for the past 3 nights. His record is 5 nights ;) I'm scared to hope for a good night tonight!


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## Starry Night

Hi, bumpin! 

sequeena - 6 hours does not sound like a lot but I have no idea what is standard.

afm - feeling really pissed at the world and everyone. Last weekend, over Easter, we were with the inlaws out west. The day before we left my SiL called to say my older niece had the chickenpox. After calling our doctor, we decided to make arrangements to keep my niece away from my daughter as my DD hasn't had her vaccination but let the niece play with my son because he has been vaccinated and we let the other kids have free reign with my daughter. My SiL's kids have been vaccinated so we were kind of thinking it was bad luck that one got the pox anyways but that the others would likely be OK. However, two days in, my SiL thought the pox were so mild that she would take my niece to church and exposed her to my daughter.

Now tonight we got the call the other niece has the chickenpox. So it seems to be a virus virulent enough to break through the vaccine. Gah! My son has had the vaccine so it really would just be a few spots, nothing major. But my 10 month old.....Really stressed! And on top of that, my son had three different therapies starting next week, two of which are time sensitive and can not be rescheduled. And for his speech I've been waiting since last July for it to begin. My kids won't be clear of the 21 day incubation period until May.

Just furious. My BiL and SiL's kids are ALWAYS sick and we are always catching something stupid when we go over. And this time the timing really, really sucks. I feel furious with the stupid genes my husband's family have. They're always sick. I have never gotten sick as often as I have since marrying into it. I guess it's not their fault. But I'm just pissed. :growlmad:


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## Starry Night

lynne1983 said:


> Why do people say stupid things....I will not be held responsible for the next person that says oh once he's talking you'll wish he'd shut up.. well no I won't I long to have a conversation with my son for him to say mummy I love you.
> To make it worse it came from someone who's child was speech delayed to someone I thought would understand &#55357;&#56865;
> 
> That's great RachA can imagine that would be a weight off you're mind xx

I still get that and my son is nearly 4 and mostly babbles. I still get the "Oh, I know so and so whose kid didn't talk until [x] and now they won't shut up". It is concerning that my child isn't speaking properly. And also, just because a kid isn't speaking doesn't mean they aren't LOUD. My son is always babbling and scripting (which is still not clear and I need to translate for others) and yelling and laughing and screaming, etc. And I can tell when he's being rude and defiant. I'd rather he talk back correctly. :winkwink:

I also got that about walking. "oh you don't want him walking, then you have to chase him". He didn't start walking until 21 months. i was starting to get SERIOUSLY concerned that it wasn't going to happen at all and people were saying I didn't want him to walk! :growlmad: :dohh: yeah, carrying around a 35 pound child (at the time) everywhere I went was a dream come true. They even said it to me in front of a woman whose daughter has celbral palsy and didn't walk on her own until about 10. 

They just don't think about what they're saying.

It's like when my dh and I were told after our first m/c that we should be glad we don't have kids yet (and they knew about the m/c). Just dumb.


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## alibaba24

Hi starry just a quick post. My daughter caught pox at 10 months old and they were bad she was COVERED but she coped with them rather well. a few rough nights of no sleep as she was so uncomfortable but overall ok. Once the spots are out and they blisters have burst and gone "scabby" then they are no longer contagious. Over here in the UK anyway. my oldest who also has had them was allowed to go back to pre school while spotty as long as they spots have crusted over


:hugs:


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## bumpin2012

I hate when people try to minimize your concerns... Or act like you simply WANT something wrong worth your child.

I hate being in limbo. Just waiting for assessments here, and will be for several months.


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## Starry Night

alibaba24 said:


> Hi starry just a quick post. My daughter caught pox at 10 months old and they were bad she was COVERED but she coped with them rather well. a few rough nights of no sleep as she was so uncomfortable but overall ok. Once the spots are out and they blisters have burst and gone "scabby" then they are no longer contagious. Over here in the UK anyway. my oldest who also has had them was allowed to go back to pre school while spotty as long as they spots have crusted over
> 
> 
> :hugs:

I'm really hoping we caught the magic window of my older niece being no longer contagious (her spots were scabbed by the time we saw her) and before my younger niece was contagious. I think you're most contagious the day or two before the spots appear. The pox are going around my nieces' and nephew's school so it's also possible the younger one caught it from a classmate more seriously affected than her sister. (My older niece never got a fever or a cough or runny nose....just a few pale spots)

Anyways, I can't live under a rock until the 3 week incubation period is over. Most kids are vaccinated anyways so I am hoping it should be fine. My SiL said her doctor told her the shots had been updated since her girls received them. They never got a second dose which is now standard. I've decided I will only cancel the appointments if either of my kids actually has spots appear before that.

On another topic: did anyone else have a struggle with getting their spouse to accept the diagnosis? I think my DH is having a really tough time. He now says he accepts our son has autism (that was a long fight with lots of arguments even after the diagnosis) but he is constantly shutting down any and all talk about therapies. If it's not a free program run by some charity, he's not interested. Even then, oh, it's too far or too early or what if he's called in for over-time (rarely happens). He then gets upset if I confront him on his resistence but he shuts me down every damn time. I went ahead and signed up our son for a music therapy without consulting DH because I knew he would hem and haw until it was too late. So today I told him we're going and that's it. He complained, of course.

Getting him to face the fact that we NEED to get our son into some form of therapy even with the great cost is going to be so hard. I wanted to face him tonight on that but he seems to be not feeling well and drifted off to sleep much earlier than usual (I'm recovering from a stomach bug). I don't know. It's just been so frustrating. I've already told him that he's been my biggest obstacle so far. But he keeps insisting that our son's case is mild and won't need much therapy. He is totally pulling that out of his butt. The specialist clearly stated my son was in the middle of the spectrum. Yes, she was very encouraging about my son showing signs of being able to improve. BUT THAT REQUIRES THERAPY!!!

Edit: Though, in fairness to my husband, those around us are not helping him with his denial. "Oh, he's fine" is something we still hear all the time. I know I worry but I am with him all day and see where the struggles are. It's more than a speech delay -- something is getting lost in translation. And he's still a toddler so some of of his peers have some similar struggles--but they are all growing out of it and it's not to the same degree.


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## Starry Night

bumpin2012 said:


> I hate when people try to minimize your concerns... Or act like you simply WANT something wrong worth your child.
> 
> I hate being in limbo. Just waiting for assessments here, and will be for several months.

Limbo stinks.

There is the limbo of waiting for a diagnosis and then there is the limbo of trying to get onto (and off of) waiting lists. I still don't have an appointment date for my son's hearing test and he was referred last July. Yeesh. I appreciate not having to pay out of pocket every time but Universal Health Care sure stinks sometimes. Private Care may treat you like a customer but because you are a customer they want your money and time and will serve you to get it. Universal Health Care is about cutting costs. It's out of necessity but it doesn't help us any.


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## RachA

Starry-if say that your OH's reaction is fairly common. Men tend to be 'fixers' and he's probably feeling like he should be able to 'fix' this and because he can't he's finding it hard. He needs to get there in his own time. 
I would say that I'm a bit of a 'fixer' and it took me a lot longer to come to terms with the fact that my daughter wasn't developing at the correct rate. 
Plus it is so hard dealing with lots of different therapies-I felt for a long time that DD never got to do anything fun because she had so many different therapy sessions to go to and I didn't have the energy to go to something just for fun. Plus I didn't want to have to explain what her issues were to more people that I felt needed to know. 


Your oh will get there-I wouldn't push him as it has to be at his own pace. In the mean time try as many free things as you can.


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## Starry Night

Thanks. We hashed it out a bit last night. I don't think he even realized that is what he was doing. He thought he was planning for every contingency. I had to tell him that there is going to be so much we have to plan for that I can't plan for every "what if" scenario. Some of them we will have to take them as they come. So many therapies are time sensitive or have extremely long wait lists so I can't always take the time for the "what if one of us gets sick one day and can't go" or "what if I lose my job and can no longer pay for it" or "but gas is so expensive". To me, those questions sound like stalling as the reality is our son needs therapy, the reality is the therapies are all going to be in the city as there is NOTHING here and the reality is those therapies are not covered by the government and are expensive.

I will try to give my husband more space. I know I have my own issues to get through but because of the time sensitive issues we can't afford to have any doubt or crisis. I've put them on the back-burner for my son. I assured DH that I will keep my ear to the ground for any community programs that are free/cheap and for anything I can research for myself online to do at home. But at some point we will have to do some sort of private therapy--even in a limited sense--and that it will be costly. I could tell he was willing to think it over.

His "what ifs" also hurt my feelings because he made it seem like I'm just rushing into things without considering all the aspects. I spend my day researching and trying to figure out what to do. I see the other local parents on the FB sites crying over the lack of programs and the waits and being denied the most basic of help. I told him we are SO lucky that the doctors have been the ones to catch the diagnosis. We've been having some opportunities falling into our laps. I told him the path is being laid out for us when so many people have to fight for years just to get somebody to listen to them. It would be a crime not to take it.

I did manage to get out last night for a ladies' evening and it was so wonderful to have a night away from it all.


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## RachA

That sounds good. 

My oh accuses me of being so laid back about everything and he thinks I'm bit concerned about DD in the same way as him. I've had to tell him that I might be ok outwardly but inside I'm breaking down on a regular basis. I worry that if I cry I won't stop so I just don't let myself cry. I also know crying etc won't help me or DD. And I know that worrying about her starting senior school when she's 11/12 is pointless because she's only 5 and so many things will change in the next 6 years. OH does worry etc though.


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## alibaba24

RachA said:


> That sounds good.
> 
> My oh accuses me of being so laid back about everything and he thinks I'm bit concerned about DD in the same way as him. I've had to tell him that I might be ok outwardly but inside I'm breaking down on a regular basis. I worry that if I cry I won't stop so I just don't let myself cry. I also know crying etc won't help me or DD. And I know that worrying about her starting senior school when she's 11/12 is pointless because she's only 5 and so many things will change in the next 6 years. OH does worry etc though.

I can really relate to this. on the outside i appear like I am confident and got it all under control but on the inside Its a complete stress fest re my daughter. I have to work hard at not worrying about her


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## Starry Night

Yeah. I know I need to let it all out at some time and allow myself bit of a pity-party but I feel like I need to have at least two or three ducks in a row before I can stop and scream and feel sorry for myself. I nearly broke down yesterday but the night out helped.

I can really see my inlaws' influences over my DH at times like these. He has tried hard to work against most of the more negative influences (they have good influences too, obviously) but planning is one area the wires cross. With my in-laws even the simplest plans - like which service to attend on Sunday and how we'll get there-- is over-complicated with fussy details that are constantly being second-guessed and changed and every suggestion debated until noone knows who is coming or going. My DH wants to know exact to-the-minute details of a day's plan weeks in advance. The only way to do that is to plan for EVERYTHING and to assume NOTHING is in stone. You can't ever to commit to anything that way.

I am far from one to rush into things. I love to do my research. And I'm normally the Eeyore of our relationship and my DH the Tigger. So it's disconcerting when the roles are reversed. Though I guess I'm being more of the Piglet (afraid but will do what must be done) and my DH is being Rabbit (the ultimate fuss-pot)

can you tell that Winnie the Pooh is the current obsession in our house? LOL


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## bumpin2012

Yes. What RachA said. It took months of gentle prodding for my hubby to even accept that G was different and falling behind. He just needed time. For the most part, I did my research and just went about doing what I wanted/thought was needed. He actually told me at one point that he thought I was acting crazy, and maybe it was time that I simply accepted that he was fine... Denial, denial, denial.

Universal health care has its downside, but I'd never be able to afford all the services we've had access to. A year for a hearing test does sound extreme... I think we waited 3 months here in NS...


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## annanouska

My battery will cease soon so just a. Quick hello will check in properly when I have power :hugs:


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## Starry Night

Two more days and my son's speech therapy starts. Looking forward to it and hope to get things going. He has come so far since his assessment in November. So far no real sign of chicken pox. He has fine rashy patches on parts where he sweats a bit but it looks like eczema. I have had eczema patches just like his on my arms since I was 14. Today I did find a more definite spot/bump on his bottom so holding my breath a bit but am hopeful it's nothing. My daughter has had no signs and she's the one without the vaccination. We're now in the prime incubation period. (I read it usually appears after 10 to 21 days and we're on day 14 from the last day of exposure).

We started music therapy last weekend and it went quite well. My son had a lot of fun. It was difficult in a way to see a room full of kids with autism. I found it highlighted my own denial. Some kids seemed so obviously autistic and I caught myself thinking "My son is not like that". Then I had to face....he IS like that. He has autism. OK, he's not severe, but he is a swirly, twirly, flapping, toe-stepping boy. 

And by the end I felt much more comfortable. And then I realized, I was not being judged and he was not being judged. My son could wander off and bang on the window and no one looked at either of us strangely. No one blinked when he made 4 escape attempts in the 45 minute class (he is a runner). It felt wonderful not having to apologize for my son or scold him endlessly just so the other parents wouldn't think I was "OK" with his 'bad' behaviour. All the other kids were the same. Everyone understood. I never knew how much I apologized--how nervous I was out in public and even with friends--until I was in a safe space where others understood.


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## Thurinius

So we've been told we will definitely get our diagnosis appt by end of June. Already feeling tearful about it which is stupid because I know already what they're going to say: he's asd and he's not the mild end of the spectrum


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## Reid

Thurinius said:


> So we've been told we will definitely get our diagnosis appt by end of June. Already feeling tearful about it which is stupid because I know already what they're going to say: he's asd and he's not the mild end of the spectrum

Big hugs xxx


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## Reid

Starry Night said:


> Two more days and my son's speech therapy starts. Looking forward to it and hope to get things going. He has come so far since his assessment in November. So far no real sign of chicken pox. He has fine rashy patches on parts where he sweats a bit but it looks like eczema. I have had eczema patches just like his on my arms since I was 14. Today I did find a more definite spot/bump on his bottom so holding my breath a bit but am hopeful it's nothing. My daughter has had no signs and she's the one without the vaccination. We're now in the prime incubation period. (I read it usually appears after 10 to 21 days and we're on day 14 from the last day of exposure).
> 
> We started music therapy last weekend and it went quite well. My son had a lot of fun. It was difficult in a way to see a room full of kids with autism. I found it highlighted my own denial. Some kids seemed so obviously autistic and I caught myself thinking "My son is not like that". Then I had to face....he IS like that. He has autism. OK, he's not severe, but he is a swirly, twirly, flapping, toe-stepping boy.
> 
> And by the end I felt much more comfortable. And then I realized, I was not being judged and he was not being judged. My son could wander off and bang on the window and no one looked at either of us strangely. No one blinked when he made 4 escape attempts in the 45 minute class (he is a runner). It felt wonderful not having to apologize for my son or scold him endlessly just so the other parents wouldn't think I was "OK" with his 'bad' behaviour. All the other kids were the same. Everyone understood. I never knew how much I apologized--how nervous I was out in public and even with friends--until I was in a safe space where others understood.

Oh that all sounds like a breath of fresh air xx


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## Starry Night

Thurinius - :hugs: 

I feared our son's results as well even though I too expected to hear "he has autism". I thought for sure the tears would come. But it ended up being OK. I have had many tears since though. I am hoping that's fine and normal! At least you know you're not the only one. 

I may cry when the official results come in the mail. We have an official diagnosis but no details besides "He has autism and is somewhere closer to the middle". The harsh realities in black and white may be tough to swallow.

lynne - it really was a breath of fresh air. I mean, apologizing had been my life so that was my normal. Didn't even realize it until this week. So excited to go back. We also start dance therapy. There is a support group where families get together but it's in the city and on weekdays so we probably won't ever get to go. I am on the facebook group though and requested they plan some Saturday events as that's when we'll be in the city. we shall see though. Right now I just want my son to meet other kids like him and to learn to engage in a safe place.

I have signed up my son for a special needs' swimming class. It's a community program run by volunteers so we only need to pay administrative costs. $20 for 10 private 1:1 lessons. Don't know what the waiting list is like though.


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## alibaba24

Thurinius said:


> So we've been told we will definitely get our diagnosis appt by end of June. Already feeling tearful about it which is stupid because I know already what they're going to say: he's asd and he's not the mild end of the spectrum

absolutely horrible time you have had to wait :hugs:

why can't they just say then and there when they asses surely they know then?


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## Thurinius

Thanks all. Starry night I really admire you for going to that music group. There is a monthly meeting of sen children here that I haven't dared attend yet. I'm worried about seeing my son's future.
Though I accept,he's asd I really want to believe that he'll catch up with his peers, that he won't be two years behind forever, that he'll learn social skills, that he'll make friends, that he'll talk properly.
But I'm terrified if I see older autistic children then that delusion will shatter and I'll have to accept that he has learning difficulties that he's not going to be 'normal' that he might never be able to leave home.
I'm worried the consultant will tell us he's really, badly asd that there is no hope that he'll be normalish


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## sequeena

Sorry everyone I know I am bypassing your replies but I just can't think straight right now I am so angry. Whilst waiting for a bus Thomas was babbling to me. A middle aged man then started making fun of Thomas by doing daffy duck impressions. I am so so angry that anyone can make fun of a child. I hope he falls under a bus. I will come back later and reply to posts I have to dp washing now :dohh:


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## Thurinius

sequeena said:


> Sorry everyone I know I am bypassing your replies but I just can't think straight right now I am so angry. Whilst waiting for a bus Thomas was babbling to me. A middle aged man then started making fun of Thomas by doing daffy duck impressions. I am so so angry that anyone can make fun of a child. I hope he falls under a bus. I will come back later and reply to posts I have to dp washing now :dohh:

That's horrible!
But f*** him, such low life aren't worth it. With any luck his obnoxiousness was aimed at the wrong person and he got his just desserts.


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## bumpin2012

Lowlifes... Big man there, making fun of a child


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## Reid

sequeena said:


> Sorry everyone I know I am bypassing your replies but I just can't think straight right now I am so angry. Whilst waiting for a bus Thomas was babbling to me. A middle aged man then started making fun of Thomas by doing daffy duck impressions. I am so so angry that anyone can make fun of a child. I hope he falls under a bus. I will come back later and reply to posts I have to dp washing now :dohh:

What a low life scumbag making fun of a little child really I hope he doesn't have any children or grandchildren. He must have felt like such a big man after that eh ....idiot 
I hope thomas didn't relise what he was doing xx


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## Tiff

Oh Squeena.... massive hugs. :hugs: 

People just don't think before they speak. :growlmad: Did you call him out on it? I'm always torn between the fine line of educating and then realizing that there are some out there who just won't get it no matter how hard I try.

Karma will get him, it just sucks that chances are you won't be there to see it happen. I'd be LIVID as well. Massive hugs to you and Thomas. :hugs:


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## Starry Night

sequeena - :hugs: How horrible. You'd like to think that people outgrow being bullies but some never do. 

Lately I've been thinking I'm going to have to make Taylor Swift's "Shake it Off" my new theme song. It's my passive aggressive way of mentally giving people the finger. :finger:

Thurinius - not sure it's very brave of me to go to music therapy. My son is in the preschool group and is probably the oldest one there. So in some ways he seemed to be the highest functioning kid in the room. He was just the most wander-y. One other boy started to speak with his mother so I felt a little relieved I didn't have the only verbal kid in the room. I was feeling a bit like a fraud. I think that kid even spoke better than my son. The only girl in the class broke my heart a little. She only sat there and stared and drooled. She wouldn't even pick up the toys or register the ones her parents had put into her hands. When my son started to bang on a toy she was holding her parents were eager to let him to do that and didn't want me to stop him. I realized they were happy to see another kid want to play with her.

I don't know how I'd feel seeing the older kids. I still like to tell myself that my son can become higher functioning some day.

He had his development assessment today and the various therapists said they were pleased with the bulk of his skills. He could draw lines and circles and tried to copy the face drawing the OT showed him. His gross motor skills were pretty good too though he did have some trouble understanding the directions for the various games until the therapist would show him how to do it -- he is quite visual.

He didnt comply for the hearing test (he hates having his ears messed with) so we have to go back in a month or two. And he had a really hard time transitioning between the various stations. We also couldn't get him to do a puzzle or use scissors. His first test was gross motor skills and while he passed the stairs test, he kept playing on them and was horsing around when he suddenly fell down. The therapist dove down in time to catch him before he hit is head on the floor. But he was quite shook up and threw a big fit/meltdown and it affected his other activities. He was mad enough that some full sentences came flying out -- the words come when he's motivated! "Open the door, I'm going now" was the big one. He shocked both me and the SLP (he's met her twice before now) with that one. Most of the time he has one or two word phrases.

Feeling sick today and only got through everything by downing a bottle of Pepto Bismal. Now am taking the pill form like it's candy. dH is probably going to have to take DS to the therapies on his own tomorrow.


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## annanouska

:wacko: sequeena he sounded a dick. I do tend to make comment now.

I think diagnosis is hard but surly it's better than limbo. I'm sick of limbo, I second guess myself now wondering if I have imagined it all. I do question now he is not ASD or if so he is lesser affected. His communication is improving well but socially he interacts as a learn behaviour and laughs but doesn't properly play with other kids and is terrafied properly terrafied of children he doesn't know. He will,leave the park if a child comes in, he screams and cowers away if a child approaches him but adults don't worry him:dohh:. We have had two terrifying things this week...l1 he wondered off in costco, he often goes to end of aisle and back to us but properly gone. We checked everywhere all the shed, in between things etc. he wA fwr end of the shop on a pink leather chair feet up :wacko: he was not at all phased. Next he nearly got run over...just bolted he won't stop he won't hold hands nothing. I'm tying a its strap but he gets it off


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## Starry Night

anna - how terrifying.:hugs: It's so scary when our kids wander off. I'm glad he was all right and unaware of how frightened you were. We use a harness/back-pack with a leash. Our son is pretty happy with it though so I don't know if it's fully escape-proof especially as we use a generic one you can find in a baby/toy store. I'm on a support site where people special order ones designed for older special needs kids.

And I agree that limbo is worse than diagnosis. We were only in true limbo for about a month or so and that was pure torture (when we were first referred I felt confident that the doctor was wrong so didn't worry about it). Is your son still in the process of being tested or is it one of those cases where the doctors can't make up their minds? I hope you get some answers soon.


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## bumpin2012

Annanouska, in sick of limbo as well. I'm tired of feeling like I'm failing him because I don't know how to teach him about interacting with other children. He's 3 next week, but the size of a 5 year old. Which makes others expect behavior of a 5 year old, even though developmentally, he's closer to 2.
We went to an indoor playground today. I left crying. There we're some older (like 5 ish) kids who were avoiding him. I overheard one call him stupid, but mostly "that weird boy" it hurt my mama heart to hear it. It never affected him, but I know one day it might.


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## Thurinius

bumpin2012 said:


> Annanouska, in sick of limbo as well. I'm tired of feeling like I'm failing him because I don't know how to teach him about interacting with other children. He's 3 next week, but the size of a 5 year old. Which makes others expect behavior of a 5 year old, even though developmentally, he's closer to 2.
> We went to an indoor playground today. I left crying. There we're some older (like 5 ish) kids who were avoiding him. I overheard one call him stupid, but mostly "that weird boy" it hurt my mama heart to hear it. It never affected him, but I know one day it might.

I know exactly how you feel. My four year old has no interest at the moment in making friends. He'll play with his little brother but other children he ignores.
I worry they'll come a time when he wants to make friends but won't be able to do it (he has difficultly reading social cues) and that'll upset him.


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## Thurinius

Screwed up my courage to attend a local group this morning for children with disabilities and their siblings.
I'd been shy to go to before, still in shock re my sun being autistic I didn't want to see any older asd children because I couldn't picture his future.
But you know what I had a great time and my kids loved it. And of the siblings attending I genuinely couldn't tell which was the one with the disability all I saw was a load of kids having fun. :)


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## annanouska

We go to a special needs group I love it, met some of the coolest kids ever there!

Marcus had a catch up with his salt...she deff thinks he is not ASD and to be honest I agree but feels he shares many of the same features, especial the social emotional issues and sensory issues. The neurologist said he may have some random genetic defect that causes it all. I find it icredibly hard to explain to somebody what's wrong. He has language disorder and I feel that's becoming more apparent he recites hide and seek where are u etc then just babbles off and can't put basic things together, then he has the epilepsy, the spd, the white matter changes on mri, his increased hyperactivity and lack of danger etc. if I just real off a list he sounds like a liability just wish I could say yes this is marcus he has some difficulties as he has green spotted frog syndrome but he's doing great! :growlmad:


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## annanouska

:hugs: bumpin was meant to say your son sounds much like mine. Those comments are hurtful and mean. It's hard when they look w lot older. I do correct ppl of his age and advise developmentally he is younget x


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## Starry Night

bumpin - :hugs: I'm sorry you had such a rough outing. When we first started taking our son to play-places (like at the mall) he was so shy and insecure and somehow became a bully-magnet. Each time it was a random selection of kids yet every time the 'mean' kid targeted my son. And my DS wouldn't catch on at first. He'd think it was a game until the other kid became so unrelenting and the violence increased. And of course the mean kid was the one with the mom on the phone.:growlmad:

But now my son is a lot more confident and even if he ignores the other kids he just does his own thing. The mean kids ignore him now because he pushes and hits back. He thinks that is how they play and it's all a game to him. His friend is starting to bully him though and it's hard. I think it might just be the age though (4ish). The mom is so apologetic and says her son is being that way to everyone right now. But my son still loves him. The bullying isn't violent. It's more the incessant teasing. It just hurts to see other kids noticing the differences. His friend's younger sister complained the other day that my son was ignoring her. When the kids a year younger can see the differences it's tough.

anna - it's interesting that your SLP thinks it is not ASD with your son. It sounds like he's similar to my son but we got the diagnosis. I find this all very confusing. What makes you think it's NOT autism?

afm - my son decided he didn't need a diaper for bed tonight. We'll see how that one goes. :dohh: At least it's a positive step towards night-time potty training, right? Right???


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## alibaba24

Hi starry iv been reading your updates! I think its great he wants to go without a nappy at night time :D hope all else is well with DH


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## alibaba24

annanouska said:


> We go to a special needs group I love it, met some of the coolest kids ever there!
> 
> Marcus had a catch up with his salt...she deff thinks he is not ASD and to be honest I agree but feels he shares many of the same features, especial the social emotional issues and sensory issues. The neurologist said he may have some random genetic defect that causes it all. I find it icredibly hard to explain to somebody what's wrong. He has language disorder and I feel that's becoming more apparent he recites hide and seek where are u etc then just babbles off and can't put basic things together, then he has the epilepsy, the spd, the white matter changes on mri, his increased hyperactivity and lack of danger etc. if I just real off a list he sounds like a liability just wish I could say yes this is marcus he has some difficulties as he has green spotted frog syndrome but he's doing great! :growlmad:

my girl has a language disorder too its rough :hugs:


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## Starry Night

He did it! :happydance: I heard him go to the potty during the night and he was totally dry in the morning. I guess he had put his diaper back on during his night time potty trip because the diaper wasn't there anymore (he had left in in the bathroom before bed) but it was totally dry when we got up. I'm going to try sending him to bed without a diaper again tonight. I was nervous because he had tried taking his diaper off in the past but then would wet himself so I thought he wasn't physically ready to wake up when he had to go.

We have his second speech therapy appointment this morning. I had told the SLP that I wanted to focus more on conversational skills and expressing emotions as his labeling language is actually pretty decent. When he is motivated enough he can say what he wants or point things out. I would really like to have a conversation with him. We are also going to see if he is ready to work on annunciation. Even his scripting is hard to decipher and we usually have to translate him to others.

alibaba - DH is doing better accepting the diagnosis but is still very resistant to signing him up for any therapies. Very little is covered and the little that is will only be for a short time. I know we don't have much money but it doesn't change the fact DS NEEDS therapy. I think he thinks we can get away without therapy. So right now, unless it's free or very, very cheap I can't convince him to let me sign DS up. It's really stressing me out. My son seems to have a rather high functionality but in order to push him to have that independent life we have to help him. I feel like he has the chance to have everything but we're just sitting here and not doing anything and it is slipping away.

How is your little girl doing?


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## alibaba24

Starry Night said:


> He did it! :happydance: I heard him go to the potty during the night and he was totally dry in the morning. I guess he had put his diaper back on during his night time potty trip because the diaper wasn't there anymore (he had left in in the bathroom before bed) but it was totally dry when we got up. I'm going to try sending him to bed without a diaper again tonight. I was nervous because he had tried taking his diaper off in the past but then would wet himself so I thought he wasn't physically ready to wake up when he had to go.
> 
> We have his second speech therapy appointment this morning. I had told the SLP that I wanted to focus more on conversational skills and expressing emotions as his labeling language is actually pretty decent. When he is motivated enough he can say what he wants or point things out. I would really like to have a conversation with him. We are also going to see if he is ready to work on annunciation. Even his scripting is hard to decipher and we usually have to translate him to others.
> 
> alibaba - DH is doing better accepting the diagnosis but is still very resistant to signing him up for any therapies. Very little is covered and the little that is will only be for a short time. I know we don't have much money but it doesn't change the fact DS NEEDS therapy. I think he thinks we can get away without therapy. So right now, unless it's free or very, very cheap I can't convince him to let me sign DS up. It's really stressing me out. My son seems to have a rather high functionality but in order to push him to have that independent life we have to help him. I feel like he has the chance to have everything but we're just sitting here and not doing anything and it is slipping away.
> 
> How is your little girl doing?


brilliant!

I totally get why your frustrated as I am sure you have read over and over early support is paramount. it must feel your wasting time :hugs:

I am sure in time he will come round to your way of thinking


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## bumpin2012

Thanks ladies 

G doesn't have a clue that other kids avoid him, he thinks it's all a game, totally misses those social cues... It only bothered me to see. I did mention to the kids that he is only 2, and that's why he's not playing the way they think he should.

ASD is such a large spectrum, I assume that's why some kids are, and others are not. G doesn't fit the picture perfectly, but has many of the pieces. If be surprised if they say he's not on the spectrum.


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## Starry Night

I think that blindness can be a gift. At some point they should probably learn so they don't get suckered into bully traps (the classic invite the awkward kid to the popular kid party just so they can humiliate them) but for now, I want to preserve my son's innocence. He is happy to just be in the same room as other kids. He sometimes finds a "friend" in the play place. One time he was the rough kid with another kid, running around and screaming and knocking into each other. It was mutual so I let them but he did knock over another girl and I made him apologize.

One time, a group of kids surrounded him and started asking all these questions but he wouldn't answer, and a bigger kid said "he can't talk". I held my breath and expected the worst. But then the bigger kid started pointing things out and saying the word for it and asking my son to repeat it. Then he helped him up the slide and looked after him the rest of the time. Good people and kids are out there. I will never forget it.

The speech therapy went really well today. The SLP showed me this chart of how they rate skills. And of the more basic speech/communication skills he has them fairly-well mastered. She was also impressed with his pretend play. Made me glad I play with him so much and get into his space a little to get him to engage.


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## RachA

Starry Night-that's great about using the potty in the night. 


In my experience when children are younger they are generally much more accepting of differences so don't make fun of those that are different in any way. I've not heard anyone commenting on Esther's lack of talking in a horrible way. 

I do though have issues with her playing with friends. At school I think she's ok but u really feel that we are missing out of her making friends because I don't feel I can invite any one round for her to play with. She still plays along side others rather than with them so I'd be inviting someone round and E wouldnt actually play with them. I really don't know what to do.


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## alibaba24

rach does esther let you play with her?


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## Starry Night

Normally my son just does side-by-side play too so I was surprised at how interactive he was with the SLP the other day. We don't have people over a lot and yeah, I feel badly that he is largely ignoring his friends. They will bug him a bit to play then give up when it's clear he isn't responding. Yet they are all he will talk about for days afterwards. He is becoming more interactive with me, inviting me to come play with him outside and then inviting me into his games of soccer and whatnot. Maybe he is just more comfortable with adults?:shrug:

Last night our son wet himself and had a MAJOR meltdown over it. He woke up crying just as I was going into the room to check on him. So we cleaned him up and put him in a diaper but in the morning his diaper was completely dry. So tonight we tried going diaper-free again and around midnight (I'm still up then anyways) I woke him up and brought him to the potty. He went and then I put him back to bed. I don't think he would have gotten up on his own. We'll see how the rest of the night goes. Finger's crossed!


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## Reid

Hi all ;) starry night that's great with your LO using the potty through the night they all have there wee accidents here and there &#128522;
My son's been doing some pecs at nursery with his salt she said after a few structured sessions she'd call me for a chat about it.
She did phone me last week to see if I'd be interested in going on the parents more than words programme so I'm going to the interdiction session tomorrow night all I no at the moment is its 2 hour sessions for 8 weeks and it's for parents who's children have speech and language issues.
Any of you ladies been on this course? If so did it help any?
Xx


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## RachA

alibaba24 said:


> rach does esther let you play with her?

Not really. She'll ask me to do jigsaws with her but other than that she's happy to play on her own. She will play with her brother but i think part of that is he knows what she's like and if she decided mid playing to wander off and do her own thing he just goes and does something else too.
Part of me worries that if we invite a friend round she'll play for a short while and then wander off and i'll be left entertaining a child that i don't know. 


Starry Night - he probably is more comfortable with adults. I think that they know what to expect from an adult and the adult can quite easily take the lead so they don't have to. 

Hopefully taking him before you go to bed will help :)



Lynne - i've not been on the course but it does sound good.


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## Starry Night

I have heard the "More Than Words" program comes highly recommended. I've looked into getting the book with DVD so we can do it at home but it is $100. Not the worst price but I can't drop that kind of cash at the drop of a hat.

I did recently purchase a used water-table for my son. $10. Pretty excited about that. I may use some sand in there as well but water would be easier...and cheaper. DS really loves sand though. I've seen sites suggesting to use salt and ground-up sidewalk chalk as a cheap alternative to coloured craft sand but wouldn't salt get corrosive? I've never tried playing in salt so don't know what that would be like.

And my son was dry when he woke up this morning. Guess the midnight wake-ups are the way to go.

Rach - my DD seems to put up with my son's shenanigans and quirks as well. She seems to 'get' him and he loves having her around for it.


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## alibaba24

rach sounds the same as my daughter. she will play with me but because she is never at one thing for very long it seems I cant keep up with her she gets fed up


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## Reid

Starry Night said:


> I have heard the "More Than Words" program comes highly recommended. I've looked into getting the book with DVD so we can do it at home but it is $100. Not the worst price but I can't drop that kind of cash at the drop of a hat.
> 
> I did recently purchase a used water-table for my son. $10. Pretty excited about that. I may use some sand in there as well but water would be easier...and cheaper. DS really loves sand though. I've seen sites suggesting to use salt and ground-up sidewalk chalk as a cheap alternative to coloured craft sand but wouldn't salt get corrosive? I've never tried playing in salt so don't know what that would be like.
> 
> And my son was dry when he woke up this morning. Guess the midnight wake-ups are the way to go.
> 
> Rach - my DD seems to put up with my son's shenanigans and quirks as well. She seems to 'get' him and he loves having her around for it.

They have some videos on you tube about it and any info I get from it I'm more than happy to pass on here if it helps anyone out.
This is being organised through the salt in my son's nursery so it's free which is absolutely amazing. I'll let you know how it goes tomorrow night xx
Oh and big well done to your son he's doing fantastic &#128522; xx


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## Starry Night

Yeah, any info you can pass on would be appreciated. Even if it's just the gist of what it is focusing on.

I think our son is having one of those weird sudden burst of growth and development I've read can happen in the autistic brain. Since we have started his various therapies he has opened up so much. Today I heard him telling DH about what he did and didn't like. And I found these free PECs and other social stories and was printing them out and he was able to recognize some of the emotion labels at first sight. I printed out a more detailed one and plan to go over that with him.

On the flip side, this sudden increase of activity and busy-ness has upset his routine and he's been more anxious and prone to meltdowns. Also noticing more tip-toe walking and hand flapping. He doesn't normally do these things but it comes out when he's agitated or something is "different". His bolting is much, much worse too. In the past week he has learned to unlock the doors to outside AND how to escape the fence around our yard. Had about 5 minutes of panic the other day. thankfully, he didnt run off and was playing on the other side of the garage.


And he was wet when I went to get him tonight. I even checked on him an hour earlier than I did yesterday. You step forward, and then you go back again. Daytime potty training took 7 months. I guess I should expect another battle. Though this time it isn't a battle of wills so much as his body needing to catch up.


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## alibaba24

Starry Night said:


> Yeah, any info you can pass on would be appreciated. Even if it's just the gist of what it is focusing on.
> 
> I think our son is having one of those weird sudden burst of growth and development I've read can happen in the autistic brain. Since we have started his various therapies he has opened up so much. Today I heard him telling DH about what he did and didn't like. And I found these free PECs and other social stories and was printing them out and he was able to recognize some of the emotion labels at first sight. I printed out a more detailed one and plan to go over that with him.
> 
> On the flip side, this sudden increase of activity and busy-ness has upset his routine and he's been more anxious and prone to meltdowns. Also noticing more tip-toe walking and hand flapping. He doesn't normally do these things but it comes out when he's agitated or something is "different". His bolting is much, much worse too. In the past week he has learned to unlock the doors to outside AND how to escape the fence around our yard. Had about 5 minutes of panic the other day. thankfully, he didnt run off and was playing on the other side of the garage.
> 
> 
> And he was wet when I went to get him tonight. I even checked on him an hour earlier than I did yesterday. You step forward, and then you go back again. Daytime potty training took 7 months. I guess I should expect another battle. Though this time it isn't a battle of wills so much as his body needing to catch up.

hes still really young for overnight dryness. my dd 5 years old still has the odd overnight accident x


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## sequeena

Hope you're ok ladies

No need to worry about overnight wetting until about 6 or 7 I think


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## Starry Night

Oh, I'm not worried. Just don't like doing all the extra laundry! :laundry: Doesn't matter anyways as my son likes to change his outfit at least 3 or 4 times a day so still doing loads of laundry! You're happy that they learn a new skill (like getting dressed) and then you began to rue the day! :haha:

The past few days we've had success with him being dry up until his nighttime waking and in the morning his bed is dry but I find pee all over the bathroom floor and his pj bottoms are wet (he leaves them there for me) I am guessing he stays dry until he wakes up but can't hold it until he gets to the potty. He's getting close though. I do hear the clatter of the training seat being put into place in the morning so gold star for effort. Today his pj bottoms were dry so he must have gotten to the stage where he was able to get them off. But the floor was still wet.


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## alibaba24

sounds like hes trying hard which is brilliant! my dd was still in night pull ups til age 4 it never really worried me too much as she was so good through the day


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## RachA

Starry-is it worth putting a potty in his room? He might make that as it'd be closer than the bathroom? 
He does sound like he's trying hard though and I'm sure he must find it frustrating. 

I really want Esther to be dry at night but can't see it happening any time soon.


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## Starry Night

I had considered the potty in his room before but he never liked the kiddie potty. He's tall for his age and never really fit on it. He's too big for most training seats and is even starting to outgrow the one we're using now. I also am afraid he would fling it around. I usually find clothes and stuffies thrown all about his room the next morning. Sometimes the mattress is even off the boxspring with the blankets everywhere.

He was dry this morning and made it to the potty but I got up twice with him last night. 

I don't think he's ready to get up on his own but he's absolutely refusing pull-ups now.

We finally received our official diagnosis report from our son's assessment in March. (took long enough) and now we can start applying for programs. However, it didn't say anything further than that he has autism. No comments on where on the spectrum or anything.


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## annanouska

:hugs: hi ladies,mbeenr ealy busy here, nothing exciting just the usual appointments etc.

Bumpin marucs sounds very very similar. He fits most of the pieces but not all so I've been told he won't get ASD just yet. We went to a party this weekend, he did really well but had to use his chew toys to cope but did mange without for some times. He out his hands over his ears at times,mad to spin, run up and down a few times. He had a minor meltdown lots of head butting me etc but we did his deep pressure and fast rocking then he was ok. 

They don't see this, he's great at nursery he knows it all etc. the new stuff or just a bad day this is what I face. Even a random stranger asked me if he had autism the other day. I jeust said yes it was easier. She was nice telling me a out Her grandson with aspergers. He next sees his consultant in June I don't think it's anything major just a check up. I doubt his recent EEG results will be back.

I don't know why it bothers me so much not having an overall diagnosis. He does have some diagnosis of the epilepsy spd etc but I just wish there was a blanket term. I feel guilty almost wanting it but it's frustrating loads of charities, groups etc won't help him so it's like he doesn't cope on mainstream and doesn't fit Sen. There are some grouos etc that are fab and welcome Us open arms.

He's improved so much he can be quite chatty but if somebody he does t knw talks to him he won't even make eye contact or sign. He's not shy one bit tho xxx


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## Starry Night

That does sound frustrating. In our area there are some community/volunteer-run programs where you don't need an official diagnosis to participate. I can see why many places need/want some sort of classification but what do you do when your child doesn't tick all the right boxes but still needs help? There should be some sort of official 'unspecified special needs' category a doctor can give just so the parents can have some sort of support.


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## alibaba24

Hi all 

I have not really posted an update recently

I recieved a really positive letter from our last paediatric review stating the huge progress my daughter has made. how well her behaviour has improved as well as big progress in social interactions/fine motor abilities verbal abilities. also how no traits or asd are longer present nor are any mannerisms. It went into more detail obvious but overall the letter was very encouraging 

only down side is the pending genetic testing but i dont even want to think about that right now


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## Starry Night

That's fantastic news! :happydance: What a load off your mind that must be. 

afm - I think the sudden change in weather we have been having has gotten to our son. It was a rough day today. Not in the way of meltdowns, but he was just really hyper and defiant. His speech was really poor. It was just babble or slurred words/scripting and he had multiple daytime accidents when he hasn't had one in a long time. He was kind of driving us bonkers, to be honest. It's hard when he is climbing over us all the time when he's wearing his winter boots (his latest fixation).

We're also leaving for a weekend trip to see his grandparents and I think he could sense that something was 'different'.


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## alibaba24

It is starry because I was always googling fine motor delay terrified for her starting school but actual she is perfectly functional with her hands and fingers. buttons are still a bit slow but she can do them. only thing is her pencil graps is rather light so it makes for trickier writing but she can work on that . 

I have had a quite a few days like that myself with dd driving me bonkers. Now it kind of feels like my oldest is much easier and my toddler is taking over from her :rofl: hang in there things will get better. I find the weather can affect general moods and behaviours even in adults. 

the climbing over you. I totally get the frustration my DD is so petite but it still bugs me when she climbs on me she doesnt do it often but she is still too big to be sliding down my back :wacko: thankfully dont have shoes to content with

how is dh coming round to any possible therapies?


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## Thurinius

Some imaginative play today from my now officially autistic son. He pretended to be a baby and had to be rocked to sleep and went wah wah.
He pretended to be a scary dinosaur going 'raaaa'

And he had his brother have been playing with their Moomin soft toys. The little Moomins were poorly so they had to be tucked up in bed and kissed to cheer them up.


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## alibaba24

Thurinius said:


> Some imaginative play today from my now officially autistic son. He pretended to be a baby and had to be rocked to sleep and went wah wah.
> He pretended to be a scary dinosaur going 'raaaa'
> 
> And he had his brother have been playing with their Moomin soft toys. The little Moomins were poorly so they had to be tucked up in bed and kissed to cheer them up.

I love watching pretend play :haha:


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## Starry Night

My son did lovely pretend play with his SLP at his last appointment. Why won't he play like that with me at home? He only lets me play with him if I script with him or we're rough-housing. I'm supposed to be focusing on building his pretend play right now. I once got him to play spaceships with me. I was pretending my lawnchair was a space ship and I was taking it to the moon. He liked the countdown and take-off part (especially since it involved running and yelling Blast Off!!!). 

And we have had so many daytime potty accidents this weekend. It's been quite horrible. We're out visiting relatives and our cousins and their kids are here too. He had a massive meltdown last time we were here and that was just his 3 first cousins. We have 6 extra kids and 4 adults in the house with us. DH thinks he got distracted and didn't want to interrupt playtime. I think that was only a small part. He has a cold now and all the other factors probably played into it too. But he started having accidents before we left. I hope it's a phase that passes quickly. The other kids were laughing at him for the accidents and then didn't want to play with him. :( He did have some fun with them when they were outside and being active. He does OK with that. It's the quieter, indoor play that he struggles with unless he can be by himself or do parallel play and the other kids didn't have patience for that.


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## Reid

Aww starry night hugs let's hope it is just a wee phase broke my heart hearing the other kids were laughing. That's fantastic with his pretend play well done &#128522;

I got my son's nursery report back last week (1st 1 from new nursery ) it's absolutely fantastic I'm soo proud of how he's come on in this nursery was a lot of positive feedback like now he'll sit for a good period of time and paint even at the lunch table. He's also using words In nursery his key worker said he had them all in stitches a wee boy had climbed onto the table and she was asking him to come down and DO starts shouting get doon (broad Scottish accent) he was doing it when he got home to. He's starting to use more words at home to really proud of how he's doing just now &#128522; xx


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## Starry Night

That's great about the nursery report!  That's so sweet about him talking more. Sounds like he's really happy where he is. And using paint too! My son doesn't have much experience with it, but the few times have not been good. "yucky, all wet!" ha ha

Today was better. No daytime accidents--the first in about 5 days. He is settling down now that we're back home and he only is with his sister--who is his biggest fan. And the weather was warm enough so I could bring out the water table I had bought for him. I didn't have any fancy toys for it and there so many blogs on what to do with them that make it sound so complicated. I just had a toy dinosaur, a small ball and a tiny container. And he had a blast! 

At one point he said, "I am so happy!" :cloud9: He expressed a feeling! And in a complete sentence. Now Mommy was the one to be happy. He started interacting with his sister more too (she loved the water table as well).


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## Reid

Ha sounds fun I wish some of you guys stayed close our kids would have a great time together. Our weather's been terrible the whole of may a windy wash out &#128078; I just hope junes better xx


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## alibaba24

your not that far from me lynne :)


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## Reid

alibaba24 said:


> your not that far from me lynne :)

Oh you in Scotland too ) 
I stay in a wee village about 20 mins from paisley xx


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## alibaba24

Im in west lothian :)


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## Thurinius

Great to hear he's doing so well Lynne.
My sons new nursery is great too. They are having a school trip to a farm and I was oohing and ahhing about him going. I didn't want him to miss out but I had so many worries.
However his lovely teacher told me they'd decided if he came to take along an extra member of staff just for him.

They are all really chuffed he is going to go on the trip.


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## Reid

Thurinius said:


> Great to hear he's doing so well Lynne.
> My sons new nursery is great too. They are having a school trip to a farm and I was oohing and ahhing about him going. I didn't want him to miss out but I had so many worries.
> However his lovely teacher told me they'd decided if he came to take along an extra member of staff just for him.
> 
> They are all really chuffed he is going to go on the trip.

Aww he'll do great on his day trip I had the same worries with my little boy his nursery take them wee trips to different parks or cafes he was actually away on 1 on Friday there they always say he dose well on them. He'll have an absolute ball on his wee farm trip are you aloud to go along xx


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## Starry Night

Well, today was my DD's first birthday cake:) and my son got his first taste of watching someone else get a present while he didn't get one. In the past, they have gotten their gifts at the same time because our relatives live far away so they would both get gifts and Christmas and Easter of course they get gifts at the same time. He seemed to accept the explanation that today his sister would get a gift and that on his birthday he would get a gift. (it's already sitting in the closet as his birthday is a month away)

However, once the gift was opened and it was something he liked....well...all hell broke lose. Full on meltdown. But I would not let him play with the toy. It's his sister's day. I know some parents get a little something for the other kids when they are still small but I just felt that I wanted to 'rip that band-aid off' right away. I want him to get used to it now because I think it will only get harder and more confusing if I wait until later. And if his sister does end up being "normal" she will often have to put her wants aside because of his needs. Her birthday should not be one of those times.

It did kind of spoil the moment though. Still trying to get used to the fact that this is our life. And it's our daughter's life as well. She took it all in stride though.

And I think I was premature in starting the nighttime potty training. I just don't think he's physically ready to get up when he has to pee. But I started and it's been weeks now so I have to keep going at this point. He's usually pretty good about me waking him up in the middle of the night to go to the washroom (except that one time I accidentally dropped him on his face :dohh:). It's about 50/50 whether the bed is wet in the morning or not. Usually his pants are wet but the bed is dry so I'm guessing he woke up and peed after getting out of bed but before he made it to the potty (his training seat will be on the toilet but there won't be pee inside and I will find his wet pants eiter in the bathroom or on the floor of his room)


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## alibaba24

starry im with you on this one and I think I am one of the few parents who don't get the other sibling a gift when it is not there birthday. they can share there presents of course but i like to teach it is not there birthday. because in the real world i wouldnt want my child to expect things when other people are getting for whatever reason. sorry he has a the meltdown never fun . my dd who is 5 still has the odd nightime accident


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## sequeena

Hi everyone I'm so sorry I've been absent. We have a lot going on at the moment.

Starry I agree too.


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## alibaba24

hope your ok sequeena


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## sequeena

Yes I'm ok thank you just life racing at a million miles an hour :haha:


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## Starry Night

oK....I think the key to potty training is to complain it's not going well. Last night, DH and I were watching Netflix in our room when we saw DS come out of his room and go to the bathroom on his own. He didn't quite make it -- there was pee on the floor and his pant cuffs were wet. So he got to the point where he was in the bathroom and his pants were off, the seat was on the toilet. We were so proud! But then, in the morning my DH left the bathroom door shut so DS didn't stand a chance to be dry in the morning.

sequeena - hope things calm down soon.


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## Thurinius

Feeling bit down. Took my son to a birthday party of one of his nursery class. Admittedly he's been a bit ill so he wasn't a 100% himself but I found it an upsetting experience.
All the other parents could sit down and let their children loose on the giant inflatable slide but I had to supervise my son because he doesn't understand that if he stops mid way up the stairs it stops the other children getting up and so forth.
Felt very subconscious like everyone was judging me for over protective parenting.
And then they could make party hats. All the children loved it. I had to make my son's hat for him.
Not once did he even acknowledge that he even knew the other children even though he sees them at nursery every day.

Feel heartbroken.


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## alibaba24

Thurinius said:


> Feeling bit down. Took my son to a birthday party of one of his nursery class. Admittedly he's been a bit ill so he wasn't a 100% himself but I found it an upsetting experience.
> All the other parents could sit down and let their children loose on the giant inflatable slide but I had to supervise my son because he doesn't understand that if he stops mid way up the stairs it stops the other children getting up and so forth.
> Felt very subconscious like everyone was judging me for over protective parenting.
> And then they could make party hats. All the children loved it. I had to make my son's hat for him.
> Not once did he even acknowledge that he even knew the other children even though he sees them at nursery every day.
> 
> Feel heartbroken.

I hate birthday parties for similar reasons. Iv not had any crafting to worry about but I do feel like I constantly have to encourage my daughter to engage with kids and it hurts when you see others all playing and interacting . been told my DD is not on the spectrum but her social skills leave a lot to be desired. Hope you feel better soon parties can be rough on parents with kids with difficulty


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## Thurinius

alibaba24 said:


> Thurinius said:
> 
> 
> Feeling bit down. Took my son to a birthday party of one of his nursery class. Admittedly he's been a bit ill so he wasn't a 100% himself but I found it an upsetting experience.
> All the other parents could sit down and let their children loose on the giant inflatable slide but I had to supervise my son because he doesn't understand that if he stops mid way up the stairs it stops the other children getting up and so forth.
> Felt very subconscious like everyone was judging me for over protective parenting.
> And then they could make party hats. All the children loved it. I had to make my son's hat for him.
> Not once did he even acknowledge that he even knew the other children even though he sees them at nursery every day.
> 
> Feel heartbroken.
> 
> I hate birthday parties for similar reasons. Iv not had any crafting to worry about but I do feel like I constantly have to encourage my daughter to engage with kids and it hurts when you see others all playing and interacting . been told my DD is not on the spectrum but her social skills leave a lot to be desired. Hope you feel better soon parties can be rough on parents with kids with difficultyClick to expand...

Thanks. It hurts because i so wanted him to go and do something normal four year olds would do.


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## sequeena

:hugs: I had a similar experience today. My 2 year old cousin was christened and the after party was in a pub/social club with a buffet and disco. All the other parents got to sit down, eat and chat because their kids (2 and above) were able to play without much supervision. Thomas however is different and I was constantly having to watch him as he was climbing everything, being rough (without meaning to be) and at one point I caught him hitting another boy in the face with a weight from a helium balloon (the triangle weight - heavy!!!).

Thomas being in his own little world had the best time (he literally did not stop the entire time - I had to strip him to his vest he was sweating that much) but for me it was jeart breaking. I knew other people, people I didn't know knew he was disabled because one of My cousin's friends is a support worker who works with Thomas every 2 weeks but for some reason that upset me more 

Kids didn't want to play with him. He couldn't figure out jow to play musical statues and a staff member (who was trying to tell him to get down from a chair because he might hurt himself) couldn't figure out why My son (who looks 5 to be honest) didn't understand her.


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## sequeena

On a more positive note Thomas had transport for when he goes to school :) he will be going by mini bus with a chaperone and when he first starts he will be doing 8.50-11.30 instead of All day.


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## Reid

Yip I no where you ladies are coming from pretty much same here with having to watch my son when we're out like that. Last experience was at soft play when he let's me no he needs a pee by dropping his bottoms no mistaking the message eh. Plus some snotty cow was close to a smack in the mouth my son to looks more 5 than 4 he's tall and he still likes a wee run round the younger kid bit he jumped in the ball pit and she's shaking her head huffing and puffing oh the loom on her face when I called him she shot round I was right behind her about the only time he actually done as he was asked and came lol.

I'm having quite a difficult time just now with my 4 year old we had made great progress over the year with him walling by my side holding hands etc but the past few weeks I feel like I'm way back at square one runs off ahead throwing himself to the ground refusing to get up won't come when I call him over when he had been so good with this before don't no why it's went back the way and my god I'm so sick of my own bloody voice. A week this wed I have a meeting with his nursery so I'm hoping they can maybe help with some suggestions xx


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## Thurinius

I don't know what to say in these circumstances. Even though your kid hasn't done anything hugely wrong or disturbing do you tell everyone 'he's autistic'?


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## alibaba24

I would because it would make me feel better. At the parties I would drop it Intl conversation DD has language problems and doesn't socialise well. I shouldn't have to but I did feel I'd be less judged for hovering over her and that also the whole party was more bearable. And mums talk so I knew it wouldn't be long until they all knew. And thats fine with Me. Even overal if the parents know and there kid comes back from preschool and says x wasn't nice to me today that the parents would be more understanding


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## alibaba24

Also it can be a good ice breaker with other parents because pretty much everyone knows someone on the spectrum. Iv had many parents approach me and say oh my DS does this and that and often parents are desperate for someone to relate to as well so just telling people has worked quite well for me personally


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## Reid

Thurinius said:


> I don't know what to say in these circumstances. Even though your kid hasn't done anything hugely wrong or disturbing do you tell everyone 'he's autistic'?

My son doesn't have a diagnosis as of yet other than speech delay but yeah I just come out with it he has speech and language delay and will tell them if he gets a diagnosis of autism. It's people and there pure ignorance and judgmental way of thinking that makes these situations very difficult for special needs parents xx


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## Thurinius

lynne1983 said:


> Thurinius said:
> 
> 
> I don't know what to say in these circumstances. Even though your kid hasn't done anything hugely wrong or disturbing do you tell everyone 'he's autistic'?
> 
> My son doesn't have a diagnosis as of yet other than speech delay but yeah I just come out with it he has speech and language delay and will tell them if he gets a diagnosis of autism. It's people and there pure ignorance and judgmental way of thinking that makes these situations very difficult for special needs parents xxClick to expand...


I guess people just don't realise the work involved in raising a sen child. Especially when the disability isn't visible. I'm probably to blame I play it down I think because I don't want to be seen as some worn down parent of a disabled child.
And it's not always hard work, there are so many positives. But I think I only mention to people the positives rather than the negatives because I'd feel disloyal to my son discussing all the issues he has.


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## Starry Night

I just tell people. I don't know what it does for them but it makes me feel like I won't have to apologize quite so much for his future behaviour. I do apologize a lot for him.

We don't get invited to things though so not much experience. I'm bit of a recluse by nature so I don't really notice it most of the time but when I stop to think about it, then yeah, it feels kind of shameful. Only one family has RSVP'd for my son's birthday party which is in a week and we sent the invites out a month ago. I think that reflects more on the fact DH and I aren't very popular rather than DS having autism but it still sucks the kids have to pay for parental politics. Just as well, I guess, as I don't think DS would like a huge crowd. It's his best friend's family that is coming and my parents are coming out as well. I'll prepare some extra food in case anyone else decides to show up.

I've been sick so missed church today but DH came home with the report that DS had run up onto the stage during the pastor's final prayer and knocked over the drum kit and began banging on the cymbols. DH was holding DD so couldn't do much about it. Finally, the dad from our family friends (the same ones coming to the party) ran up and got him. LOL


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## annanouska

Yes I tell them. If your child doesn't have a specific diagnosis just say they have additional needs, if you mention language problems you tend to get ohhhhh to will talk when ready etc!

It makes me feel better, it makes me feel they won't judge me as much. I know I shouldn't have to but it does help me. 

The party sounds like ones I go to with Marcus! X


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## sequeena

I literally just say my son is disabled.


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## annanouska

Sequeena we will be going to the genetics team later this year, what will they do? Latest report from consultant is so frustrating "continues to be a puzzling young man in terms of definite diagnosis" I want to just scream please just stick him in the box he fits mostly as until u do I just feel,like it's all my fault he's as he is as u can't find a stupid box!!


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## Reid

So after a few weeks where I thought we were going backwards I took ds to our local cattle show (horse jumping dogs sheep cows bulls tractors ect) is very busy and he done great yes there was a few issues but some big improvements from last year. Once his turn on the bouncy castle was over he cane off no hissy fits he held my hand most of the time he was still doing this throwing himself to the ground but I was able to ignore it as we were in a safe place no cars and he just got back uo and took my hand.
We left early as he wanted to start running round with all the animals round it wasn't safe
I have a meeting with his nursery this week so looking forward to that he'll be in as a normal day so hopefully I can watch on for a while to see how he's doing.
Still going to the hanan more than words course every 2nd week had some good tips from there there videos on you tube are worth a watch xx


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## sequeena

So glad things are going well lynne x

As for genetics team - I've not a clue sorry. We had genetics counselling in january whuch basically meant going through mine and Sean's family tree. The geneticist for our area has resigned and will leave in august. We are near The top of The list but I have to ring back in september.


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## sweet83

Hello ...

I am new to this thread.. my daughter is 2 year 10months today... she just have more or less 100 words of vocabulary..she understands and follows a very few instructions like put it on table, bring it ,give it ,stand up, sit down,jump,dance....I am very much worried about her speech delay. even the words she speaks are very unclear... I read books to her ,talk to her a lot of time,show her baby videos on tv.. have no idea what else I should do? and to the brighter side she is potty trained...
I am a SHAM... and from this september (after she turns 3)goes to full time preschool..


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## sequeena

Almost 3 and about 100 words? She sounds like She is doing great to me :) kids can mispronounce things for ages. Her understanding sounds great. I'm sure She will be fine and will pick up loads at scholl x


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## Peanut78

sequeena said:


> Almost 3 and about 100 words? She sounds like She is doing great to me :) kids can mispronounce things for ages. Her understanding sounds great. I'm sure She will be fine and will pick up loads at scholl x

I also tought it sounds like she is doing great :thumbup: If you're really worried bring it up with your doctor. :flower:


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## Reid

sweet83 said:


> Hello ...
> 
> I am new to this thread.. my daughter is 2 year 10months today... she just have more or less 100 words of vocabulary..she understands and follows a very few instructions like put it on table, bring it ,give it ,stand up, sit down,jump,dance....I am very much worried about her speech delay. even the words she speaks are very unclear... I read books to her ,talk to her a lot of time,show her baby videos on tv.. have no idea what else I should do? and to the brighter side she is potty trained...
> I am a SHAM... and from this september (after she turns 3)goes to full time preschool..

She sounds like she's doing great I wouldn't be overly concerned at this point going by what you've said xx


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## sweet83

your posts gave me some strength...:thumbup:


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## Starry Night

100 words does sound good. If you're still worried--if something seems 'off'-- then ask your doctor. Our doctor said that they want 100 words and 2 and 3 word phrases by the time the child is 3. Are the words consistent and does she show signs of understanding what they mean?

My son had the required amount of words so we didn't contact the doctor (the doctor was concerned and had told us to call by a certain time if the number of words wasn't met) but what we didn't realize was my son was not using the words consistently. He'd say a word or even a complete sentence--in context--and then never say it again. Or he would use words and sayings out of context and then show no signs of seeing we didn't understand him. Babble was his default and once again, he didn't show any signs of frustration that we weren't understanding him. He also would also stand there and yell when he wanted things and we'd have to guess what he wanted. Now he talks much better and is constantly improving. :thumbup:

afm - last week was our son and daughter's combined party and it went well. Only two families plus our parents showed up but it turned out to be the perfect size. The one family has twins my DD's age and then their other kids are older--teens already. The older boys played soccer and frisbee with my son and I could tell he was so happy. He had a great time! And everyone left about an hour before bedtime so it was just the perfect amount of socialization. For a first-ever birthday party it went really well. 

And DS is showing up dry in the morning more often than not these days. We still need to take him to the potty in the middle of the night but he's getting much better at getting himself up in the morning. Makes for less laundry! I am not sure when I should experiment with stopping the midnight potty trips. He pees like a racehorse when I take him and he's pretty much sleeping on the toilet so I don't think he would have woken up on his own. I won't plan on stopping the midnight trips for awhile but I don't know how to tell he's ready either. :shrug:


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## sweet83

she is not saying any 2 or 3 word phrases... I show her the pictures of some things and asks her what is it ... she says that in her own pronunciation... for example 
1. I show her picture of "leaf" and asks what is it --- she says "leap"
2.Elephant -- says just "fant or sometimes "ant" (she says "ant " for "ant")
3.fish-- "pit"
4.car -- "'kaav"
5.blue -- "bhoo"
6.green -- "gheen"
7.lemon -- "yema"
8.red -- "yed"
9.black -- "baak"
10.purple --"pappoo"
11.monkey-- "monkey"(yes we got this word perfect)
like the list goes...
12.strawberry-- "taabeyy"
13.apple --"yappe"
14.white -- "white" (another lucky word)
like this... 

most of the day she babbles but recognizes the things and says when she sees it..
she knows I am her mommy but so far does not call me ...
if she sees ball and if I say her "blue ball" she stops saying it and remains calm...

do you think it is not something I have to worry?


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## alibaba24

I'd be more concerned with her understanding more than her actual speech sounds if she has good understanding that is very important


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## alibaba24

I just realised your daughter is nearly 3 I think (not sure about age 2) at 3 they are expected to be speaking in sentences and following 2 step instruction. Speech and language therapy seems like it will be beneficial to your little one x


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## Thurinius

lynne1983 said:


> Yip I no where you ladies are coming from pretty much same here with having to watch my son when we're out like that. Last experience was at soft play when he let's me no he needs a pee by dropping his bottoms no mistaking the message eh.xx

We had this at playbarn this morning. My son told me he needed the toilet so I went to fetch his little brother to come with us. I return to find a bare bummed son striding to the loo and his discarded pants and shorts on the floor!

Saw several Mums smiling.

Not sure why he's started doing this because he never used to.
Really don't want him doing it when he starts school in September


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## sequeena

Oh bless him!!! That is cute but yes not something to be encouraged.

How is everyone?

Thomas graduated his pre school group on Wednesday. I am gutted :( I can't believe he is going to school in less than 2 months.

We have an information exchange meeting with his school on monday then a nappy assessment on the 20th. 

Haven't heard anything about jis EEG yet which is no surprise. I hope I hear before We move I'm not entirely sure who I should ring to change our address.


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## Reid

My son's nursery told me he uses the picture cards to tell them when he needs the toilet I was uo there last week for a catch up was hoping to talk to his salt but she wasn't in till later so will give her a phone and see if I can get a catch up with her. Aww graduation already :( my little man has another year at his nursery and next month he'll be going 4 days a week instead of his current 2. Well need to see how he gets on with his speech and understanding before we talk schools.
Is your thomas going to a specialist school or mainstream? Xx


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## sequeena

Ah that's fab lynne. His pre school workers tried very hard to use pecs with him but he isn't interested he is a signer x

He is going to a special needs unit within a mainstream school


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## Thurinius

Can't believe my boy starts school in September. We haven't heard anything yet about how they are going to support him. But there is an open evening so I'm going to raise it then I think. He's been recommended one to one help but we shall see.
I worry because he's quite a placid little fellow and I can imagine the school prioritising those kids with more behavioural issues. But if left on his own my son doesn't have the capacity to learn much, he needs directing (unless it's numbers and letters which he is absolutely fascinated with!)


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## sequeena

Can you apply for an EHCP? It took about 7 months for Thomas' to complete though.


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## Thurinius

sequeena said:


> Can you apply for an EHCP? It took about 7 months for Thomas' to complete though.

What's an EHCP?


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## sequeena

Thurinius said:


> sequeena said:
> 
> 
> Can you apply for an EHCP? It took about 7 months for Thomas' to complete though.
> 
> What's an EHCP?Click to expand...

I'm not sure where you live.... in the UK we have an educational health care plan formerly called a statement. It is a legal document outlining what issues the child has and what the school has to do to accomodate the child and make sure they are safe and able to learn.


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## Thurinius

I'm in the UK. Nobody has mentioned anything about a statement yet to us, we only got the official diagnosis In May though. Who initiates that? Is it the health visitor or,the school?


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## sequeena

Thurinius said:


> I'm in the UK. Nobody has mentioned anything about a statement yet to us, we only got the official diagnosis In May though. Who initiates that? Is it the health visitor or,the school?

My son's paediatrician referred him but you can self referred through the council. Give your lea a ring and ask, they usually come under the child disability team.


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## sequeena

Schools can do it too


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## Aidan's Mummy

Hi guys I wondered how you al got doctors to listen to you?

Since Oliver was a baby I have noticed differences in his development. I am a pre school teacher so I knew something was 'right'. Anyway he has seen a paediatrician who says nothing is wrong BUT I am still concerned. He saw SALT who said he was behind in speech but have heard nothing since, he was referred to a family support service but heard nothing. Recently he has started arm flapping, he screams very high pitched when he is excited, he slaps and pinches himself, he has to have a set routine and if something is going to happen he needs a warning otherwise he will have a melt down. But because none of the doctors or health professional have seen this during a 1/2 appointment they deem him as being ok? I am just getting very frustrated and confused as to where to turn next? 
Thanks in advance x


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## alibaba24

Just keep a note of everything and where possible film his behavior which concerns you then take it back to the pead. I had to go and insist on a referal for the child development clinic we get 6 monthly reviews currently DD is having bloodwork etc to rule out medical causes for her difficult ies


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## Reid

sequeena said:


> Schools can do it too

Thanx for sharing that it's good to no. My son's nursery said they would have a meeting with me to discuss possible schools in September so I will keep note of this and ask about it then. We have the mainstream school 2 seconds up the road and there is a new specialist school getting built just now which is due to open before my son starts school xx


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## annanouska

:hugs: nothing exciting to report here. It's all bad news....his walking has deteriorated but his new insoles are helping, seizures have gone a bit wonky and he's been generally aggressive :wacko: things have been a bit better today after a horrible set of seizures he seems much more calm and happier. We have the appoint,net for the geneticist in October and that's about it. His speech is much better. It he can not communicate at all even sign with ppl he isn't familiar with he just locks right down. I'm slowly accepting that his "condition" so far is quite unique and he doesn't fit in a box too well just wish it was something g people, had heard of, maybe genetics will tell us More x


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## alibaba24

Hi . we are having genetics too x


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## Thurinius

annanouska said:


> :hugs: nothing exciting to report here. It's all bad news....his walking has deteriorated but his new insoles are helping, seizures have gone a bit wonky and he's been generally aggressive :wacko: things have been a bit better today after a horrible set of seizures he seems much more calm and happier. We have the appoint,net for the geneticist in October and that's about it. His speech is much better. It he can not communicate at all even sign with ppl he isn't familiar with he just locks right down. I'm slowly accepting that his "condition" so far is quite unique and he doesn't fit in a box too well just wish it was something g people, had heard of, maybe genetics will tell us More x

Sorry to hear you're not having such a good time. Hugs to you.

I went to meet my son's new teacher and she was lovely. And, huzzah they have applied for funding to get a one to one helper for him. I got the impression that they don't think they'll get one full time but they are already planning to use the hours by maybe letting my son have some quiet time away from the main class.

And when I expressed my concerns re him having school lunches to took me to the canteen to talk me through the whole process. I explained he has difficulty waiting for food and that can cause a melt down and she instantly came back with a suggestion that he go in five minutes earlier with his helper to give him time to get his lunch in the quiet before the rest of the class came in.

Feel very reassured and very happy. The overall impression I got was that she and everyone else just wanted to do the best for my son and do whatever was necessary to help him manage.


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## sequeena

Thurinius that is fab about your son's school I'm really pleased :)

Annanouska sorry to hear about Marcus :( thank you for tbe sticker btw it arrived today :D xx


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## Starry Night

anna - :hugs:

aidan's mommy - good luck in getting help for Oliver. I didn't have the professionals ignore me but I certainly had everyone in my personal life (including DH) dismiss my concerns as paranoia. I still get it and he has an official diagnosis now! It's frustrating from friends so I can only imagine how it feels to be dismissed by professionals. You know your son best.

Thurinius - sounds like the school is trying their best to be accommodating. And that in itself is so awesome even if they can't do everything. As long as they keep their word!

afm - haven't been on this site in awhile. I'm visiting family for several weeks in my old province. It's bit of a long visit and am starting to get a homesick little boy. DH flies out to join us tomorrow so I hope that helps! Also feels like my son (who just turned 4) is just now hitting "The Terrible Twos". All the mommy blogs and friends complaining about toddlers is finally making sense. But with DS being on the social level of a one/two year old and my DD having just turned 1 it is possible both my kids will go through the Terrible Twos at the same time. :dohh:

My kids' doctor did warn me that I'll start to see an increased difference between my DD and DS. In one way, it's nice to see that it looks like DD doesn't have autism as well, on the other hand it's hard to watch the younger surpass the elder. My DD is 13 months and is picking up language SO quickly and it's such a struggle for my son.


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## mummy2lissy

Hi all, not sure if this is the best place to post as I'm new to this forum! I'm just after abit of advice, usual stuff....can things change? How do I get dad to understand? Is there a diagnosis at the end?...here's abit on our background.

William is coming up to 19 months. He is a twin, hes twin 1!
Archie (twin2) his brother has sailed through most development milestones, he's now walking, talking, singing along to songs, playing etc and the general interaction.
From around 4 months I knew something wasn't 'quite right' with William. He couldn't sit, wave, clap etc. I expressed concerns to my hv at around 7 months when he wasn't sitting and she made a referral to development. 
When we had our first appointment a week after his 1st birthday he still wasn't quite sitting unaided. He could do a comando crawl and wasn't pulling himself to stand. The paediatrian said it looked like he had a mild development delay and would see him again 6 months later.
Within this time William has began to crawl properly and pull to stand. He has stopped babbling but he can now clap and wave but doesn't point or communicqte. (3 days ago he took 2 steps!!) He has also had staring episodes where he just daydreams in the middle of playing then some time after snaps out of it. He plays by throwing toys or mixing them round in a box, he seeks sensory activities, plays alone and has no interest in his brother.
Anyway last month we saw his Dr again for his next appointment and he did a series of tests etc and the outcome was that he has poor muscle tone in all limbs and that they very concerned about what they'd seen. There was no mention of conditions etc just their concern.

A referral was made to SALT for a feeding assessment as he picks bits out of food and never clears his mouth. His weight is on the 9th centile. He has been referred for a longer assessment at our development centre.

SALT came last week and following his feedING assessment and the developmentshe saw, she has put him back to 9 months and added thickener to his drink while we wait for a videofluoscopy for his drinking issues (wet sounding and bubbles after drinks) 
She saw his movements and went on to make a referral to OT.
Whilst she was here he had one of his 'absences' and became really hyper afterwards. 

I received paperwork through for his assessment and it will start in November and last 6 weeks, in the meantime SALT will still be visiting along with a specialist hv and then OT. 
Things seem to be moving along and lots of people getting involed, it's so overwhelming. 

But...we don't seem to be finding any answers and I don't like the unknown! Everyone is expressing their concern or saying 'special needs', 'additional needs' but we keep hitting walls!

Has anyone been through or seen something similar and does have a diagnosis?

I know these things tend to be a waiting game but I don't wait very well! Lol 

Sorry for the long post and thankyou if you made it to the end!! 

Gemma x


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## sequeena

Hi mummy2lissy. I didn't want to read and run but I don't have much time right Now. A lot of what you describe is similar to my son Thomas. I'm sorry to say aside from diagnosis for things like hypermobility, sensory processing disorder and (well almost diagnosed) epilepsy we still have no idea why Thomas is like He is. It is a long waiting process. Thomas was referred at 17 months (but watched from birth because of congenital deformities). He will be 4 in a few weeks. Hopefully we will see a genetecist at The end of this year.

It's hard and frustrating not knowing what is wrong but if you focus on The individual problems rather than The diagnosis I find it easier to deal with xx

I'm just off out to physio. Anyone remember me injuring my shoulder at The beginning of april? It still hurts so I think it may be more than just a sprain.


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## Reid

I phoned the developmental centre my son attends every 6 months to see where they were with the autism assessment waiting list (he was referred in feb) I was expecting a few months behind what they told me in Feb which was 6 months but no 11 months so we're looking at January February next year&#128546; bit deflated and I can't help but worry he could be missing out on extra support and help xx


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## Thurinius

lynne1983 said:


> I phoned the developmental centre my son attends every 6 months to see where they were with the autism assessment waiting list (he was referred in feb) I was expecting a few months behind what they told me in Feb which was 6 months but no 11 months so we're looking at January February next year&#128546; bit deflated and I can't help but worry he could be missing out on extra support and help xx

Hi Lynn,
Is this your first appt? We had an eight month wait between the initial assessment and the final diagnosis.
But we didn't miss out on anything I don't think. My son was under the care of the early learning team who went into his nursery to advise the staff there.
Since diagnosis we have been moved onto the communications disorder team because he's older and they are liaising with his school.
We were told that we would get help before diagnosis, our authority doesn't wait for it.
Quite possibly yours is the same too. So don't fret.
Though I know the waiting is hard xxx


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## Reid

Yes it the 1st appointment we are waiting on. Thankfully my son's in a very good nursery that's for children with speech disorders asd and so on. Next month he will be going to 4 days from his current 2 days xx


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## RachA

mummy2lissy said:


> Hi all, not sure if this is the best place to post as I'm new to this forum! I'm just after abit of advice, usual stuff....can things change? How do I get dad to understand? Is there a diagnosis at the end?...here's abit on our background.
> 
> William is coming up to 19 months. He is a twin, hes twin 1!
> Archie (twin2) his brother has sailed through most development milestones, he's now walking, talking, singing along to songs, playing etc and the general interaction.
> From around 4 months I knew something wasn't 'quite right' with William. He couldn't sit, wave, clap etc. I expressed concerns to my hv at around 7 months when he wasn't sitting and she made a referral to development.
> When we had our first appointment a week after his 1st birthday he still wasn't quite sitting unaided. He could do a comando crawl and wasn't pulling himself to stand. The paediatrian said it looked like he had a mild development delay and would see him again 6 months later.
> Within this time William has began to crawl properly and pull to stand. He has stopped babbling but he can now clap and wave but doesn't point or communicqte. (3 days ago he took 2 steps!!) He has also had staring episodes where he just daydreams in the middle of playing then some time after snaps out of it. He plays by throwing toys or mixing them round in a box, he seeks sensory activities, plays alone and has no interest in his brother.
> Anyway last month we saw his Dr again for his next appointment and he did a series of tests etc and the outcome was that he has poor muscle tone in all limbs and that they very concerned about what they'd seen. There was no mention of conditions etc just their concern.
> 
> A referral was made to SALT for a feeding assessment as he picks bits out of food and never clears his mouth. His weight is on the 9th centile. He has been referred for a longer assessment at our development centre.
> 
> SALT came last week and following his feedING assessment and the developmentshe saw, she has put him back to 9 months and added thickener to his drink while we wait for a videofluoscopy for his drinking issues (wet sounding and bubbles after drinks)
> She saw his movements and went on to make a referral to OT.
> Whilst she was here he had one of his 'absences' and became really hyper afterwards.
> 
> I received paperwork through for his assessment and it will start in November and last 6 weeks, in the meantime SALT will still be visiting along with a specialist hv and then OT.
> Things seem to be moving along and lots of people getting involed, it's so overwhelming.
> 
> But...we don't seem to be finding any answers and I don't like the unknown! Everyone is expressing their concern or saying 'special needs', 'additional needs' but we keep hitting walls!
> 
> Has anyone been through or seen something similar and does have a diagnosis?
> 
> I know these things tend to be a waiting game but I don't wait very well! Lol
> 
> Sorry for the long post and thankyou if you made it to the end!!
> 
> Gemma x


Hi

It's really great that William is getting lots of help. Keep pushing it :) 

My situation is similar but like most of these things, not the same. 
I guess you are feeling in limbo at the moment as he has no diagnosis. We are still in that position nearly 4 years later. Esther has developmental delay but they don't know why. She's been tested for various things but there is no apparent reason. Unfortunately this can happen but I will say that it becomes much less of a deal over time. Going back 2 years we wanted a name of something so that we could put it in paperwork etc. now though we don't feel it's such a big deal. She has delays and she has 1:1 help at school. Because she doesn't actually have a diagnosis she hasn't been pidgon-holed into a little box which people who don't understand quite often do. For us the lack of a diagnosis has been positive.


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## RachA

Update from me: 

Sometimes I feel a bit of a fraud coming on here which I guess is why I don't come on much. 

Esther finished her first year at school today. I can't believe it's nearly over already. She has totally exceeded our expectations. Although they weren't exactly high!!! She can just about write her name. She recognises most of the letters of the alphabet and she can read about 10 words. Her sentance structure is so much better than it was-I think she actually knows most of the prepositions. She can count and recognise numbers up to around 20. 
To us all that is amazing.
She is still in nappies at night. She has no concept of adding numbers together. She still refers to herself as Esther rather than I or me. She will still walk into the road if she wants to. 

She's been referred to the OT as her motor skills aren't improving as much as they should. I don't know how long that's going to take to come through though.


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## alibaba24

Hi each great to here Esther has exceeded your expectations ! My DD took quite a while to stop referring to herself in the 3rd person too I am sure it will come. My girl starts school next month in nervous but excited too as she has made some lovely progress with her attention and listening. Still not on level with her peers but progress is progress right? We had ot out for her poor pencil grip and she discharged us on the same visit and gave us exercises to do.buttons are still a big struggle she doesn't get much practice with them is the only thing. Were still kinda going along without any official diagnosis too. I'm trying to just realise she is what she is she has strengths and weakness like us all. I'm on a great fb group called specific language impairment and it's great to relate to other parents


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## Thurinius

RachA said:


> Update from me:
> 
> Sometimes I feel a bit of a fraud coming on here which I guess is why I don't come on much.
> 
> Esther finished her first year at school today. I can't believe it's nearly over already. She has totally exceeded our expectations. Although they weren't exactly high!!! She can just about write her name. She recognises most of the letters of the alphabet and she can read about 10 words. Her sentance structure is so much better than it was-I think she actually knows most of the prepositions. She can count and recognise numbers up to around 20.
> To us all that is amazing.
> She is still in nappies at night. She has no concept of adding numbers together. She still refers to herself as Esther rather than I or me. She will still walk into the road if she wants to.
> 
> She's been referred to the OT as her motor skills aren't improving as much as they should. I don't know how long that's going to take to come through though.

Great to hear how well Esther is doing.
Don't hide away. I love updates


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## sequeena

Oh lynne what a wait :( we are having the same with genetics x

Rach I always love hearing about esther you should pop in more often xxx

I actually have issues with me instead of T for once. Possible PCOS, underactive thyroid and/or diabetes. I had a blood test today. They couldn't find a vein in either arm for ages and when They did They butchered me :( I also have a womb scan coming up to look at my ovaries.


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## Reid

sequeena said:


> Oh lynne what a wait :( we are having the same with genetics x
> 
> Rach I always love hearing about esther you should pop in more often xxx
> 
> I actually have issues with me instead of T for once. Possible PCOS, underactive thyroid and/or diabetes. I had a blood test today. They couldn't find a vein in either arm for ages and when They did They butchered me :( I also have a womb scan coming up to look at my ovaries.

Ano it's frustrating the waiting not that I'm looking forward to the assessment I've heard it's not a fun day...oh you really haven't had the best of days hope you are better soon xx


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## kealz

Hi all! May I join..? 

A bit about us:
My son, James, is developmentally behind where he should be. He turns 3 in Sept and his language is limited to single words, mostly nouns. He has hypermobility in his hips and has always hit physical milestones later. He lacks the communication and social skills of other children his age. He is currently under a paediatrician, SALT, physio and early years specialists and is on a waiting list for assessments for asd etc. 

James is such a lovely little boy, affectionate, polite and wants to please. Of course a dx won't change that but if there is something deeper than "boys are just lazy" (as I'm often told!), then he will get the help he needs. 

So good to come on here and share with others in similar situations. :) x


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## Thurinius

kealz said:


> Hi all! May I join..?
> 
> A bit about us:
> My son, James, is developmentally behind where he should be. He turns 3 in Sept and his language is limited to single words, mostly nouns. He has hypermobility in his hips and has always hit physical milestones later. He lacks the communication and social skills of other children his age. He is currently under a paediatrician, SALT, physio and early years specialists and is on a waiting list for assessments for asd etc.
> 
> James is such a lovely little boy, affectionate, polite and wants to please. Of course a dx won't change that but if there is something deeper than "boys are just lazy" (as I'm often told!), then he will get the help he needs.
> 
> So good to come on here and share with others in similar situations. :) x


Welcome!


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## Reid

kealz said:


> Hi all! May I join..?
> 
> A bit about us:
> My son, James, is developmentally behind where he should be. He turns 3 in Sept and his language is limited to single words, mostly nouns. He has hypermobility in his hips and has always hit physical milestones later. He lacks the communication and social skills of other children his age. He is currently under a paediatrician, SALT, physio and early years specialists and is on a waiting list for assessments for asd etc.
> 
> James is such a lovely little boy, affectionate, polite and wants to please. Of course a dx won't change that but if there is something deeper than "boys are just lazy" (as I'm often told!), then he will get the help he needs.
> 
> So good to come on here and share with others in similar situations. :) x

Hi and welcome 
Xx


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## annanouska

:hugs: I've not been about much.

Marcus is a complete nightmare recently...I think "for once" it is purely an age/ developmental thing and we are just hitting the terrible two kind of behaviour all be it late. We purchased some cakes at a bakery today , he asks for cake, told first tea the cake with pictures too well that was it....he moaned and cried all through the tea ate nothing, no cake as a result , continued crying and screaming until his bath!

Oh and just randomly high pitched screaming and laughing for the fun of it :growlmad:

His speech is significantly better but still bizarre in the pattern etc. he will randomly wave to people as say hello but like a learnt behaviour? If somebody actually gets close and tries to interact he doesn't like it. He's getting more regimented about things and his sensory issues are as ever crazy. We are awaiting physio as his walking had deteriorated a fair bit but his new insoles and boots seem to have helped a lot.

Sequeena I have severe pcos how I even have my little terror is a complete miracle! It's crap but I've know about it since 10yrs old so kind of used to it now :nope: x


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## Thurinius

We had a success today. I took my son to the theatre for the first time. Had no idea how it would go. So booked the early performance, got an aisle seat in case we had to nip out.
Aside from a meltdown in the toilets that was hand dryer related (I had to physically drag him in yelling -he was doing the yelling) it went great.
He loved it.
And he loved the fact that a cast member came down to ask random kids what their names were and what were their favourite underpants (not a weird thing, the show was Aliens Love Underpants) He got picked. Admittedly I had to say his name for him but he chose red pants
And you should have seen his face when the coast member went back on stage and said he'd spoken to him and he liked red pants. Then all the cast gave him a wave and he waved back like mad. Was so wonderful to see.
He joined in some of the audience participation shouting out answers.
Kicked his legs with joy throughout.

However in mcdonalds afterwards could I get a single word out of him about it? Nope. Wouldn't event tell me if he liked it.


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## Starry Night

Welcome, kealz! :flower:

RachA - you're not a fraud. You're always welcome here. Happy updates are always wonderful to hear. I'm glad Esther is doing so well. 

sequeena - sounds like you're going through a rough time. :hugs: I have PCOS as well though it's more of the functional variety. I mainly affected my ability to STAY pregnant.

anna - Sorry that things have been rough with Marcus. My DS seems to be hitting "terrible twos" late too. I really can't pin all of his recent tough behaviour on autism. It definitely seems toddlerish even though those years should be behind us now. It's all "I want this" you give it to him and then he will SCREAM "no! I don't like it!" So annoying. ](*,)

Thurinius - how lovely for your DS! And I can't get my guy to talk about things that have gone on either. He is living in the moment!

afm - finally back from our month-long trip to see my parents. DS was ready to come home 2 weeks ago so don't think I will be doing such a long trip again. He still had fun but that was mixed in with some very low, low moments and meltdowns. I do think the good memories outweigh the bad though. At least, that is how I'm choosing to see it. LOL 

Lots of firsts for him and us. The main thing I learned is that it is OK to push him a little bit. When he is afraid to try something it is OK to push a little because in the end he loved whatever it was -- ie., going on a carousel for the first time. We sat on a sleigh with a bench so there was no up and down like with the horses but it was a great start. He also fed a giraffe at the zoo. That was all his idea. He ran up--barely waiting his turn--and it was over in 3 seconds but the look on his face was priceless. He absolutely beamed.


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## alibaba24

Hi starry good to here from you and see your getting comfortable with how best to help your son :)


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## Starry Night

I may be insane but we just took in two kittens today. We always knew we wanted to get a cat but this was a little sooner than expected and I never really thought my DH would cave and agree to two (he always said he was a 1 pet person). I have heard pets are good for kids with autism and there is that book "All Cats Have Aspergers" or something like that. 

My DS and DD are really excited about them but I have to slowly introduce them to each other. The kittens are still in shock about being taken from their mother and home. They are brothers. Pickles and Pepper. lol (firm believer in cats needing ridiculous names...keeps 'em humble....our last cat was named Waffles)


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## alibaba24

Great names !! I follow a fb blog called letters from a spectrum mum. She recently rescued a kitten and so far its doing wonders for her son


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## Starry Night

Our old cat before she died hated kids but we had gotten her before DS was born and we didn't know a lot of people with kids before that either. I'm hoping the kittens will grow up with the kids and be friendly. They're still really shy. They were barn kittens and didn't get much socialization but when we first met them they were quite friendly and their mother was too. Their sister threw a hissy whenever we tried to pick her up so that's why we didn't take her instead. ha ha

DS loves animals. When they are older I will probably get them a dog too but that is a lot more work. I'm also considering a service dog which is even more work. DS loves cats but I think he loves dogs even more. But DH had a bad experience with one as a child so he is nervous around them and raising a puppy will be all on me. Too much to do with small children in the house. And DH and I both are more cat people anyways. I do love dogs still.


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## annanouska

We have two Bengal cats. One is pepper (girl) the boy is riddick. They had never seen a child let alone baby before we had DS. They adjusted rally well and are good with him. He likes to stroke them and brush them. Play Wight ehir fish in w stick toy and I put food in the dishes and get him to carry it to their feeding place. Some,times he is not co operative but mostly ok.

We are getting a home visit from the epilepsy team as he went into status the other week so going to get a plan together for rescue medicines. His epilepsy is quite unpredictable he could go weeks relatively stable then have mass problems, I'm used to it now tho to a degree. His speech has come on well tho not there just yet he's just quite "odd" hates certain noises very sensory, has a meltdown if he is disturbed when engrossed in an activity, eg pouring sand at nursery a don another child joins him he can't cope at all :nope: 

We went out yesterday with a group and he was speaking loud (no idea why he often talks loud but when anxious he stops speaking or whispers) and he got up for a second and his friend sat I his seat....q meltdown. I explained and signed friends and. Friends share as although I know giving him the seat wok,d be easier it was for 5 mins and in school he will face these issues so I. Trying to gently expose them. Everyone else stood up?! Stood up properly and came near him and just stared? I was so upset I wanted to snap but lucky we were going. Thing is the others I. The group have downs or issues which are quite obvious and when they aren't coping people, are so kind and understanding. Sometimes I want to have a neon sign over his head, please go away! X


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## alibaba24

annanouska said:


> We have two Bengal cats. One is pepper (girl) the boy is riddick. They had never seen a child let alone baby before we had DS. They adjusted rally well and are good with him. He likes to stroke them and brush them. Play Wight ehir fish in w stick toy and I put food in the dishes and get him to carry it to their feeding place. Some,times he is not co operative but mostly ok.
> 
> We are getting a home visit from the epilepsy team as he went into status the other week so going to get a plan together for rescue medicines. His epilepsy is quite unpredictable he could go weeks relatively stable then have mass problems, I'm used to it now tho to a degree. His speech has come on well tho not there just yet he's just quite "odd" hates certain noises very sensory, has a meltdown if he is disturbed when engrossed in an activity, eg pouring sand at nursery a don another child joins him he can't cope at all :nope:
> 
> We went out yesterday with a group and he was speaking loud (no idea why he often talks loud but when anxious he stops speaking or whispers) and he got up for a second and his friend sat I his seat....q meltdown. I explained and signed friends and. Friends share as although I know giving him the seat wok,d be easier it was for 5 mins and in school he will face these issues so I. Trying to gently expose them. Everyone else stood up?! Stood up properly and came near him and just stared? I was so upset I wanted to snap but lucky we were going. Thing is the others I. The group have downs or issues which are quite obvious and when they aren't coping people, are so kind and understanding. Sometimes I want to have a neon sign over his head, please go away! X

Sounds like you had a really rough time :( hope your feeling bit better now and Marcus. Sometimes my DD can get super fussy about things and I can see where its heading when things don't go her way but at same time she needs to deal with these things. So not fun when there is on lookers though


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## Starry Night

anna - :hugs: I'm sorry, that sounded like a really tough day. Invisible disabilities are so misunderstood. In one way, how are others supposed to know about the disability but at the same time the quickness to judge and stare is horrible. I hope the current issues with his epilepsy settle soon. Did you have your home visit yet with the epilepsy team yet?

And I really like Bengal cats. I think they're so pretty and exotic looking.

afm - just having a hair-pulling sort of day.:brat: My son decided to get up at 4 this morning. He normally is a great sleeper which I know is awesome with a kid with ASD. But today I got to feel the pain that other parents have to deal with. Oi. And of course being so tired meant DS had more meltdowns (throwing, hitting, spitting, yelling) and I'm too tired to be as patient as I should. It also doesn't help that DD seems to be entering the tantrum phase (she is 14 months). She's picked up on the hitting and she's always been bit of a drama queen when it comes to crying and clinging.

And my son is tormenting the cats. The kittens seem to be wanting to be friendly and the male, Pepper, had been showing signs of being ideal for the kids. He was starting to follow them around and sit with my son, etc, but my son gets so over-excited he likes to spit at the cats. Spitting is such a sign of aggression to kitties so of course, they hate it. They don't scratch or bite but they run off and hide. Now Pepper runs off whenever he sees my son. :nope: I have tried modelling the sounds and behaviours that the kitties like or explaining how the spitting scares the kitties. But to no avail. My one year old does better with them (though she likes to copy her brother's spitting....monkey see....monkey do....)

I really do think my son is more of a dog-person but I had really been hoping the pets would be something he could connect with. He does like them but just isn't ready to deal with them I guess. Or he remembers how mean our last kitty had been to him.


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## Misstrouble19

my son is 4 years old but working as an 2 year old basically and hes got gdd got an appointment again with kids doc end of october i have claimed dla for him but got it on low rate but better than nothing, its money i can put away for him :)


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## sequeena

Hi ladies I'm so sorry I'm not around. 6 days until school lots of stress with transport. Still need to do shoe shopping which will be a really traumatic time for T.

I hope you are all ok I will try and catch up soon xxx


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## RachA

sequeena said:


> Hi ladies I'm so sorry I'm not around. 6 days until school lots of stress with transport. Still need to do shoe shopping which will be a really traumatic time for T.
> 
> I hope you are all ok I will try and catch up soon xxx

It seems to be so busy over the summer. 

Hope you get the school transport and shoes sorted. 

We did our shoe shopping last week and thankfully she still fits in her uniform from pre holidays :) 

I'm feeling very frustrated at the moment. I have been waiting for an op on my wrist since May. I was told it'd be done between end of July and Aug. I chased them up 2 weeks ago as I hadn't heard anything and they said it'd be end of Sept definitly-I was ok with that. I decided to chase them up again as still hadn't heard anything and was told they were aiming for end of sept but maybe the first week or so of October! I then mentioned that they'd best take some dates I'm away as we are going away as a whole extended family at half term. Apparently I can't fly for 6 weeks after the op!!!! Good job I mentioned it. It now means that I can't have the op until the beginning of Nov :( 
Not happy as it's really hurting me and normal painkillers don't help at all.


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## Starry Night

Ugh. Why do they do that?! I'm sorry you have to wait so long for surgery. That's a long time to deal with pain. My father-in-law had a similar experience a few years back. I don't even remember what the surgery was for anymore but hospital was undergoing renovations so they bumped it back. First it was a month and then it was another 3 or 4 months. It wasn't all that minor either. 

Is there any way you could get a prescription for stronger painkillers?

afm - another year until our son starts kindergarten but I need to start to get the ball rolling on applying for an Individual Education Plan. Still not really sure what that all entails. I already shot the principal an email and he wants me to call the second week of school.

We also now have a specialist who will be coming to our house about once a month to work with my son using Floor Time therapy. This will be on top of the occupational and speech therapy he is already getting. I'm pleased she will be coming to the house as we're rural and everything is such a drive. Never mind we only have one car and when I need it that means I have to get the kids up early and drop my husband off at work and then pick him up later. I try to schedule appointments so I don't have to make more trips than necessary. Packing the kids up is such a pain!


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## RachA

Thanks Starry Night. 
I was toying with the idea of going to the drs to see if they could give me anything stronger. The only problem being that anything stronger is morphine based and I really don't want morphine based products. 
In the end my parents have stepped in and are lending us the money to gave it done privately. So I'm having the op this Friday. There will be a whole host of other issues over the next two weeks as I won't be able to dress Esther or do her hair. I won't be able to take her out on my own as if she has a strop I won't be able to pick her up etc. 
but at least it's being done :) 

It's good that they are coming out to yours for this therapy. Sometimes it's just too much having to keep going out for different things. 
Hopefully at some point the different therapy will stop and it'll be much easier for you. It's so much easier now that Esther's therapy is done in school.


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## Starry Night

I'm glad you are able to get it all taken care of. I would be uncomfortable with taking morphine as well.

I'm really hoping my son will get support at school once he starts next year. Our province is really terrible with support. Many kids with autism are denied funding or support of any kind and are just expected to cope. And my son is relatively high-functioning so it makes it tough to prove we need that help. Another mom on a local Facebook group was even just denied disability financial aid so if we get denied too we can't even pay for private. (The therapy he is getting now will stop once he starts kindergarten).


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## Thurinius

We've had my son's first week of school.
His teacher is lovely and letting him out first and they have been taking special care of him over lunch time, it's the first time he's had school dinners.
they applied for funding for a one to one helper but no news yet. Which is frustrating.
however a speech and language therapist is going to observe him on Monday. So hopefully he should get some help.


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## Reid

Not been in here for a while how is everyone and there kids doing good I hope.
We've had some huge positives in the past few months my son's now going to nursery 4 days a week which at 1st I felt a bit ill over only because i though it feel like I'd never see him but it's working out well he still really loves going there and now that winter is creeping in its good cause he's not going to be stuck in the house. He's also completely took the feet away from me a few times now in the best way just randomly coming out with new words. He was playing on the floor with his toy bus I was chatting to my mum on the phone and next thing the wheels on the bus go round and round all day long as clear as day you could have knocked me down with a feather he's been singing it all day I'm soooo proud of him he's done this with a few wee songs now &#128522;
We also got an appointment through for the asd assessment (after going to the local msp the waiting list was 11 months and he waited 9 plus months for salt so I was out with the boxing gloves) he go's at the end of the month. I'm glad we got the appointment but I do still feel a little nervous about it.
Hope things are all good with you ladies xx


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## Reid

I've joined a few good groups on faceboook for special needs parents in the area and have got in touch with the parents of the kids my son goes nursery with on them which is nice. There trying to set up play schemes in the area which would be good to. The only thing is mil has wangled her way into the group and is now admin so no blowing off steam in there eh I can't talk freely about things x


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## sequeena

Ladies I am so behind, sorry :(

Annanouska did you get the visit from the epilepsy team? How is little man now? I think it upsets me more when kids stare because I know I can't tell them to fuck off :dohh:

Starry night How are things? Is he back to sleeping ok?

Hi misstrouble How are you? If you don't think the rate of dla is right you can appeal xx

Rach How did your op go?

Thurinius it sounds like your son is doing well. Does he have a statement? I would pursue that If you can, the school can refer him. Fingers crossed he gets 1:1 soon.

Lynne he is doing so well!! You must be so proud!! How did your MIL manage that? :dohh:

As for me... first full week of school done. 2.5 hours per day. I am exhausted. We need the weekend to receuperate. Thomas is sleeping every night (usual wake up for nappy change etc) but one night, wednesday I think he was constantly cryjng :( my fitbit said I was up 12 times!! He loves school though. Every day he comes home on the bus and he is quiet but once he has eaten I ask what he did and every day he says play red car or play truck.

He has clearly been outside a few times As one day he filled his pocket with sand :haha: his teacher rang me to say he goes to assembly every day but he has been cryjng :( perhaps being with the entire school is a little overwhelming? On friday he went on his first school trip to the town's annual fair. His teacher said he didn't like How busy it was which was expected but the got him on 2 rides even though he didn't like it. Bonus getting him on there though.

He will be staying for lunch this week but education won't fund a bus just for him to come home so I have to pick him up at 1pm. I am excited to see How he comes and How much he eats.

His behaviour at home is pretty horrendous but We were expecting it. Last sunday at softplay he kicked a 2 year old in the chest. It was clearly not thought out and just an automatic reaction to the child walking past him :dohh:

He has been referred to a behaviour is which I'm thankful for on october 7th I start a course for parents of children with learning disabilities.

Thomas has been constipated for months and I had no clue. I went along to a potty training course just for info As he is not ready. There the had a poo chart and Thomas was doing rabbit poos which means the are constipated. I had him checked over and he has been constipated for 6 months +. I had no idea. He shows no pain or discomfort and can't tell me anything. He is now on a mixture of lactulose and movicol.

Happy Sunday!!


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## Reid

Lol pocket full of sand that made me laugh must he thought I like this I'll take some home for later lol. I think you're right probably the whole school being together is to much for him you could maybe ask if 1 of his teachers would stay in the class with him until he's had proper time to settle In and get used to the new surroundings of school and that's amazing he's sleeping I no what a hard time you had with his sleeping.
Oh god knows she's on loads of pages what gets me most is she's never really bothered with him xx


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## minties

Does anyone have any ideas on how I go about telling what behaviour is due to Thomas's ASD, or just him being a big meanie? He threw dirt in Sophies eyes and she was screaming in great pain, I had to throw her in the shower with all her clothes on to wash it out. I was holding her head back and forcing her eyes open and she was clawing at me and weeping and screaming :-(.

He seemed to think it was ok because she was in his way and didn't have any sympathy. Sophie says Thomas hates her :-(. I almost cried myself she was so upset and in pain! There is still dirt coming out of the corner of her eyes 4 hours later. Thomas still doesn't care. He sometimes hugs her and says sorry but not often.


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## alibaba24

minties said:


> Does anyone have any ideas on how I go about telling what behaviour is due to Thomas's ASD, or just him being a big meanie? He threw dirt in Sophies eyes and she was screaming in great pain, I had to throw her in the shower with all her clothes on to wash it out. I was holding her head back and forcing her eyes open and she was clawing at me and weeping and screaming :-(.
> 
> He seemed to think it was ok because she was in his way and didn't have any sympathy. Sophie says Thomas hates her :-(. I almost cried myself she was so upset and in pain! There is still dirt coming out of the corner of her eyes 4 hours later. Thomas still doesn't care. He sometimes hugs her and says sorry but not often.

I'm not an expert but that seems like 4 year old stuff. They don't really have a grasp on consequences yet and are impulsive. My two nephews are just awful to each other and show no remorse when they see the other one upset. They are 6&8 brothers


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## minties

Thank you, it's really hard for me to tell because Sophie gives sympathy and has never done anything like this, probably just her personality.


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## bumpin2012

Hi ladies. I'm not on BnB much these days.

ASD assessment will be in November. Until then, just waiting in limbo.

G has done well with daycare, and since we had tubes placed in his ears he's come a long way from a speech perspective. He's still miles behind his peers, though

How everyone doing?


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## RachA

Thurinius-glad your son seems to be getting in well at school. 

Sequeena-how's Thomas got on this week at school and staying for lunch? 

Op went ok thanks. I'm relatively pain free now as long as I don't pick anything up. I'm shocked at how quickly I've lost the use of my hand though. It's been a week since I had it done and already my grip is weakened. Hopefully in another week or so I can start doing exercises to build the strength back up.


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## sequeena

Minties how are things?? Thomas is the same!

Hey bumpin so good to hear from you! Good luck with the asd testing xx

He's doing well... as in He is eating and playing and sleeping every night etc. However He keeps being scratched by a boy in his class and thomas has now started pushing kids at playtime and even pulled a girls hair today. Mortified! But I was expecting this. Thomas thinks it is hilarious :dohh: He doesn't understand at all


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## Starry Night

It's getting a bit late and I'm getting sick of the computer but just thought I'd check in.

We're doing OK and DS has been happier lately (and sleeping better!). There had been a lot of the grumpies this summer which I think was more toddler than autism but still frustrating!

And even though he doesn't start school until next year, the school year has really brought on the onslaught of therapy programs. The calendar is filling fast! Also driving into the city for seminars on the RDI therapy. Very interesting and also challenging way to think about approaching ASD.

I'm most excited about getting into a swim program we had registered for ages ago. We had been put on the wait list but a last-minute spot opened up and we start this week. It's one-on-one swim lessons for special needs' kids and they only charge $20 for 10 lessons. There is more to it than just swimming. They have social events and camps, etc. So thrilled to be in. :happydance:


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## Thurinius

Sigh.
just met with special needs coordinator at my son's school.
They didn't get funding for him to have a one to one helper.


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## sequeena

Starry it sounds like things are going well!!

Thurinius did they not bother to get funding or were they turned down?

Thomas had his yearly paediatrcian appointment on Tuesday. Now he's 4 they don't do the ruth griffith assessment anymore. She said he is still delayed and younger mentally. It was quite frustrating. I know he is still delayed but I'd like to know where he is. Hopefully the report she sends me will have more information. She will see him in a year. Her job is done really he has all his referrals. The most interesting part was when she measured his height he is 108.5cm Now (91st centile).

Yesterday he had a dentist appointment. His teeth are perfect :) he came home from school with a sticker because he took a small sip from an open cup and he didn't push at play time. I am so pleased :)


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## Thurinius

They applied for funding and got turned down.
I do wonder if it's because he doesn't have behavioural issues. He's the placid/passive type of autistic.

Pretty upset about it. I know these are the years that will make the most difference to whether he is a functioning adult.
if I hadn't paid for speech therapy he wouldn't have had any for these last ten months.


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## sequeena

Wow. That sounds completely ridiculous. I would complain like hell. He has additional needs He should be supported.


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## Starry Night

That sucks about the funding. :( Funding is a huge issue over here as well. I really would like a one on one for my son as well mainly because he tends to wander and bolt. But like your little guy, he is otherwise more the passive/friendly type of autistic kid. No way will we qualify for the top funding. I just hope we get some. It seems so unfair. With autism so common these days you'd think there would be more support. :nope:

Our government funds therapy up until kindergarten so if we don't get funding I don't know what we'll do about speech or occupational therapy. Private costs about $100 an hour.


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## shirlls

Hi everyone, I just found this thread. 

I live in Glasgow (UK) and have a 3 year old son and 11 month old twin girls. My son was diagnosed with Gross Developmental Delay at just over a year old as he wasn't sitting up and he is very hypotonic around his core and has the 'most hypermobile joints that the paediatrician has ever seen' apparently. He started sitting up unsupported at 17 months, and started walking just 3 months ago at 2 years and 11 months. 

His walking is coming on great and he is getting stronger every day although still unable to walk long distances and is prone to falling over a lot. He also has speech delay and only says words and very short sentences but can't fully converse yet. He displays some traits of autism however has excellent social interaction skills and is full of cuddles, with eye contact and a desire to be sociable. He is awaiting autism screening which we have been told will begin at the start of next year.

My twin daughters (11 months) are hitting their milestones so I am hopeful they aren't delayed as it has been a stressful ride with my son. I know it's wrong but I often feel bitter and jealous about my son having delays and possibly being autistic, when I say jealous, I mean jealous of all the people I know whose children met all their milestones. I am in no way ashamed of it but I'm fed up of coming out of appointments with patronising specialists feeling sad that my son might not be able to do what other children can, and wondering what the future holds as nobody seems to know.


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## alibaba24

shirlls said:


> Hi everyone, I just found this thread.
> 
> I live in Glasgow (UK) and have a 3 year old son and 11 month old twin girls. My son was diagnosed with Gross Developmental Delay at just over a year old as he wasn't sitting up and he is very hypotonic around his core and has the 'most hypermobile joints that the paediatrician has ever seen' apparently. He started sitting up unsupported at 17 months, and started walking just 3 months ago at 2 years and 11 months.
> 
> His walking is coming on great and he is getting stronger every day although still unable to walk long distances and is prone to falling over a lot. He also has speech delay and only says words and very short sentences but can't fully converse yet. He displays some traits of autism however has excellent social interaction skills and is full of cuddles, with eye contact and a desire to be sociable. He is awaiting autism screening which we have been told will begin at the start of next year.
> 
> My twin daughters (11 months) are hitting their milestones so I am hopeful they aren't delayed as it has been a stressful ride with my son. I know it's wrong but I often feel bitter and jealous about my son having delays and possibly being autistic, when I say jealous, I mean jealous of all the people I know whose children met all their milestones. I am in no way ashamed of it but I'm fed up of coming out of appointments with patronising specialists feeling sad that my son might not be able to do what other children can, and wondering what the future holds as nobody seems to know.

Hi. I am from Edinburgh :) my daughter met all her physical milestones but she has a language disorder I often feel a pang of sadness when I hear other 5 year olds conversing beautifully and wish my daughter did not have these problems. Try not to feel bad about natural feelings. No mother wants to see their child struggle in any circumstance. I know its hard but I just try think of the positives x


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## Reid

shirlls said:


> Hi everyone, I just found this thread.
> 
> I live in Glasgow (UK) and have a 3 year old son and 11 month old twin girls. My son was diagnosed with Gross Developmental Delay at just over a year old as he wasn't sitting up and he is very hypotonic around his core and has the 'most hypermobile joints that the paediatrician has ever seen' apparently. He started sitting up unsupported at 17 months, and started walking just 3 months ago at 2 years and 11 months.
> 
> His walking is coming on great and he is getting stronger every day although still unable to walk long distances and is prone to falling over a lot. He also has speech delay and only says words and very short sentences but can't fully converse yet. He displays some traits of autism however has excellent social interaction skills and is full of cuddles, with eye contact and a desire to be sociable. He is awaiting autism screening which we have been told will begin at the start of next year.
> 
> My twin daughters (11 months) are hitting their milestones so I am hopeful they aren't delayed as it has been a stressful ride with my son. I know it's wrong but I often feel bitter and jealous about my son having delays and possibly being autistic, when I say jealous, I mean jealous of all the people I know whose children met all their milestones. I am in no way ashamed of it but I'm fed up of coming out of appointments with patronising specialists feeling sad that my son might not be able to do what other children can, and wondering what the future holds as nobody seems to know.

Hello :flower:
I'm not far from Glasgow myself... my son has just been diagnosed with autism he's 4 1/2. You're little boy sounds a bit like mine as In he has good social skills (although he's speech delayed) he enjoys being in the company of adults and children he's very loving he to gives good eye contact he's an amazing little boy...I'm very chilled out kind of person and I try to focus on the positive and I never compare my little boy to others his age he's just him and he needs a little more time to accept things but whenever he achieves something it makes it all that much sweeter. We were lucky we got our son in to a fantastic nursery which has helped a great deal he really loves it there.
I no it can be hard not to worry but don't let it take over just take each day as it comes...is your little boy at nursery just now xx


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## smurff

Hi, im new hear, I've been searching for other parents to talk to who seem to be in a similar situation as myself. My gorgeous little princess is 3yrs 4 months, when she was about 6months old she had tonticollis then went on to have plagiosefilly (sorry spelling not my strong point) she was under peadiatrion for this and the also thought she was late in crawling and referred her for physio at 9 months which I was not happy about as I thought it was extremely early, anyway she crawled the day before her 1st bday but then they said she should be walking by now so it was back to physio, she finally walked at about 19months. Her first word was mummy at about 10 months. We moved house and area so we had to start referrals all over again plus we noticed one other eyes wondering so we got a refferal for that as well, turns out she had a dirrective squint in both eyes. Now you could only notice this when she was tired or off in a world of her own other than that not noticeable at all to the point that none of my family or her dads side of the family ever noticed it but the nasty horrible uneducated stupid cow said to me and her dad that we should look into an operation to correct it cause we didn't want her growing up looking like that!!!!!!! Believe me I can't say what I thought about this poor excuse for a women cause I'm sure this post would be taken down. She had a 2 yr review later on last year as we were just starting to get concerned about her speech, we filled in the forms of what words/sentences she could say and went to see a peadiatrion, we were told speech was fine and not to worry. We moved again to where I'm living now and hv come to see us as we were new to area and I explained my concerns, to cut a long story short in the last 6 months my DD has had development tests, peadiatrion apps, eye test which by the way showed she never had a squint in the first place, speech therapy, 2 hearing tests, blood tests and has started nursary. Finally a month ago we were told she has global development delay, not sure why as she only had blood test done yesterday, she has very limited speech, can probably say 20 words and a few sentences but since she started nursary is getting alot better. She doesn't understand things and doesn't know how to interact. She's such a happy smilely lg and loves her little brother to bits and gives the most amazing cuddles. So just wanted to give you a bit of background on my lg and say hi and its finally such a relife to be able to talk to others who understand things :happydance:


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## sequeena

Hi everyone x

Smurff I'm sorry it's taken a while to respond, I have been very busy recently. Your LO sounds a lot like my son - which is typical as he has.GDD too. How are things?

I can't even remember everything I have been that busy.

Basically:
- thomas' eye sight has deteriorated. We don't know to what extent yet. He has an app On 1st december
- finally met the geneticist she is fascinated. They found nothing On their tests but she said there is a genetic syndrome They just don't know what yet. Whatever it is it is a condition that only affects males and is passed On by females. We have a 1 In 4 chance of another baby having the same problems. His details have been sent to 2 different studies so hopefully we will get an answer soon.
- we and his teacher tried potty training for 5 days. Disaster. Try again next time.
- bonfire night. Disaster. Triggered his SPD BADLY.
- Date for moving is december 4th. Finally!!
- my doctor tried to put the mirena coil In me. It went badly. I had to have the implant instead.
- thomas' first parents evening was lpvely. We found out he goes to the sensory room every day, does mr tongue exercises, can draw a 2 with lots of help, signed his IEP etc.

There is more I bet. My brain is just tried at the minute.


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## sequeena

I just realised I started this thread 2.5 years ago.... wow. I hope it has provided comfort and support for you all. I changed the name, it seemed right to.


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## Thurinius

sequeena said:


> I just realised I started this thread 2.5 years ago.... wow. I hope it has provided comfort and support for you all. I changed the name, it seemed right to.

It certainly has helped.
I'm one year into my journey as parent to a child with additional needs and everyone on this thread has been so supportive.

I've felt able to vent here, to reveal my frustrations in an honest way because you guys get it.

With other parents I'm always caught in this internal dilemma. I don't want to make my life sound too difficult because I don't want to appear put upon and I love my son and 80% of my time with him is a doddle.
But then I don't want to act as if it is easy and that him being autistic doesn't create problems.


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## Damita

:wave: hey! I'm damita my son had a severe vaccine reaction at 3 months which has caused him to be development delayed and has hypotonia down his left hand side, he's 16 month but is at a development of a 9 month old :)


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## sequeena

Thurinius, I'm glad and I understand. I feel sometimes that people will get sick of me talking about things. That never happens here.

Hi Damita, lovely to speak to you again :) so sorry about your LO :( how is he doing?


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## Eve

I'd like to join you ladies if you don't mind. 

I'm Eve. I have two children. J is 13 and K is 5 (almost 6). J has been diagnosed with ASD, ODD, ADD/ADHD, Bipolar Disorder (tentatively as they don't fully diagnose until adulthood with that one) OCD, and a non-verbal learning disability as well as has delays with his fine and gross motor skills. His APGAR score at birth was a 2, then 5, then 7 due to the cord being wrapped around his neck so tight for what seemed like forever. He needed to be resuscitated after delivery. We've been through A LOT with him including a 10 week hospitalization after our daughter was born (she was 14 months) and he spent some time outside of our home as there was a safety issue for a while :cry: 

J also suffered the loss of his newborn baby brother when he was just 5 years old.. During that time I was struggling to even find help for him. He didn't get his proper diagnosis until well after my daughter was born... before that, different doctors just wanted to push medications on him. 

We still struggle daily with many tasks, school being a HUGE issue but he's come a long way and I'm amazed with how smart he is. He's doing amazing with his academics. He needs to work on his social skills but he's not had many friends at all growing up so it makes it even more awkward for him... We're getting there, slowly but surely getting there. 

:hi:


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## Damita

:wave:

Yeah doing really well, can pull himself up, sit up, trying to stand :)

:hugs: Eve


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## Reid

Hi Eve my fellow christmas lover lol ive seen you pop up on the christmas threads where I've spent most of September October November and December lol not been on the special needs section for a while so ill give an update of where we are now.
So in September my wee boy 4 was diagnosed with autism. I thought after diagnosis this would open doors to some support like asd friendly play clubs and just general support for me as his mother like someone I could go to for advice I've got to say I've been left very disappointed and I don't think I've every felt so isolated and alone. He was diagnosed I was handed a bunch of leaflets told to apply for dla and thag was it that was 4 months ago and we haven't heard from a single health care professional. I've searched the Internet high and low for clubs to go to all are pretty out the way for us and require 2 buses this is where we have a big problem. My son doesn't wait well and tends to dart off so you spend all the time waiting on the bus chasing him trying to keep him out of harms way this can lead to meltdown you get the picture. I've emailed all the local autism charity's asked about starting a club in a town closer to me bit the NSA say they can't do it they don't have the means.
Feel like I'm banging my head against a brick wall. 
Oh god hurry up spring where we can at least get out in the garden.
How's everyone else doing? Hope you all had a lovely Christmas and all the best for 2016 xx


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## sequeena

Oh gosh with the move and us all being ill then Thomas going back to school I've not had a chance. We had a lovely christmas.tjanks I hope you are all well x

What a shame that there is no support for you that is awful :( have you googled your town and carers service? Almost every town should have one. I joined ours a month ago and have been invited to all sorts. It's.for the carers but you can ask What is out there for your son.

How is he with school? Any support there?


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## Reid

sequeena said:


> Oh gosh with the move and us all being ill then Thomas going back to school I've not had a chance. We had a lovely christmas.tjanks I hope you are all well x
> 
> What a shame that there is no support for you that is awful :( have you googled your town and carers service? Almost every town should have one. I joined ours a month ago and have been invited to all sorts. It's.for the carers but you can ask What is out there for your son.
> 
> How is he with school? Any support there?

Yeah I've been in touch with them and I put my name down for the autism courses they do but they won't be for a few months if they get the funding. It was them I asked about starting a group in the town next to the wee village i stay in but they don't have the means for it. I'm in various facebook groups which I've asked about groups there's absolutely nothing. His nursery is great and he enjoys it. I'm waiting to here back about a wee dance class to try him with but from reading up on it I don't think it's for autistic kids which I thought it was and if it structured he won't follow it and probably get annoyed x
Glad yous had a good Christmas xx


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## sequeena

How frustrating. Have you managed to find anything?

Thomas is struggling with school germs at the minute. In the last few weeks he has had 2 colds and a sickness bug. He went back to school today but is of course very tired. He is still snotty too.

I had a phonecall from SALT she has met Thomas a few times now. He still has pretty poor attention but he will get there. He has some sounds like buh and kuh but a lot he gets wrong or can't say. She will work with him for 6 weeks then ring me to tell me How he's doing.

He has an eye appointment on thursday. Nothing major just a check up.

He is zooming round on his 3 wheeled scooter I am so impressed. We Have taken it out a few times and he is doing really well.


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## DonnaBallona

Hi girls! Not sure if iv posted in here before but wanted to say Hi.

I'm mum to 3, my youngest has a degenerative genetic disease called mitochondrial disease, specifically complex 1- neurotransmitter disorder. He has had a million tests, and a million appts to confirm this and we have a LOT of input from various people. He's a bit of a mystery to a lot of professionals as mito is rarely seen (not helpful!) 
Jude has minor developmental delays, behaviour issues, dystonia, weak swallow so is tube fed, and chronic lung disease.
Just wanted to stop by and say Hi :wave:


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## sequeena

Resurrecting this.... not sure if anyone is around... I'm really struggling at the moment :(


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## MummyMana

Hey everyone I think I posted in here before when we were just at the "things aren't quite right" stage. Well an update - my daughter still doesn't have an official diagnosis but the good news is that it's only because she isn't old enough to be diagnosed where we are - she is strongly suspected to have ADHD and possibly ODD and is also on the waiting list for the final part of an ASD assessment (which can take two years), this is great because even though she doesn't have the official diagnosis we know what we are dealing with, but it hasn't made things any better... She's seen the adhd nurse who has said she can tell from a mile off that she has ADHD but I'm already doing everything she would suggest :/


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## lusterleaf

Hi! I am not sure if I have ever seen this thread before. I have a 4 year old non verbal ASD son, he is considered lower functioning. I have joined special needs parent facebook groups but not really finding the type of "support group" that I was looking for. I feel like sometimes I will ask questions on there that go unanswered. I did meet a few moms in person from there that lived local to me, but I feel like I can't relate to them, as their kids are higher functioning- speaking, toilet trained, very bright. 

Anyway I just wanted to let whoever out there know that has a special needs child that you are not alone. Some days I feel alone, some days I ask why me, other days I feel bad for asking why me... and I am always questioning, am I doing enough?

Anyway if anyone needs to, feel free to vent, I will lend an ear!


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## alibaba24

Hi sequeena are you ok


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## sequeena

Hi mummymana. I remember you :) you're in the same boat we are. No diagnosis. ADHD where I am isn't diagnosed until about 7 years old.

Hi lusterleaf. I hope you can find support here. My son is potty trained in the day now but has a learning disability and at almost 5.5 he's still functioning on a 3 year old level. I find it difficult to relate to people too.

Hi alibaba how are you?

I'm just struggling in general right now. Thomas still has no diagnosis. We're part of a genetic trial that tests me, my husband and Thomas to see if there is a genetic condition. The geneticist said there is one and it definitely comes from my side of the family but they can't figure it out. He's just had more bloods and urine taken to test for other rare conditions. 

He's doing well in school. He still has a full EHCP. His teacher has been having issues with him as he doesn't want to do any work. He's nowhere near reading or doing maths but they're working on letters and counting. He still goes to the nursery to play as it's integration and he's on their 'mental' level.

He has horrific anxiety. Especially around the bath and shower. We're trying to find solutions but nothing seems to be helping. He grinds his teeth terrible in his sleep and he sleep walks. He still doesn't sleep well and he's just been referred for a sleep study as we think he may have sleep apnoea. He's still suffering with glue ear so we're back and forth to ENT. The right side has glue ear which just cleared up (but he's had this since before he was 2). His left ear is full of wax so the doctor can't see in it yet and Thomas won't let him suction it.

After his blood and urine results come back the paediatrician wants to discharge him from the service. There's nothing they can do and now I feel so alone. He's been referred to a service because of his behaviour.

I don't think this time of year is helping. We can't do anything festive it's too much for Thomas. Everyone is posting on facebook about all the lovely things they're doing and that they can't wait for the school holidays. Thomas breaks up tomorrow and I'm dreading it. Sean is working every night until Christmas Eve. All my family are going to be busy doing festive stuff. I'm just trying to get through the day.


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## MummyMana

I think it's 6 or 7 here as well, although the adhd nurse did say in Gin's case she could get a diagnosis as early as 5 depending on how co operative the school is (she would do it herself but she is due to retire before then) .

It sounds like you're really facing a lot at the moment :/ I can't offer much help, but with the bath thing - Imogen went though a stage where she was REALLY opposed to the shower. She was also going through a "dog" phase though so I told her we were going to "play doggy grooming" and managed to trick her into having a shower by pretending she was a dog and it was a grooming parlour (we have a wet room with fold down chair) do you think he would respond to something like that?


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## lusterleaf

sequeena I am sorry it seems like there is a lot going on. Are you able to see someone on your own for an evaluation, such as, a developmental pediatrician, or a neurologist? I am in the US and I took my son to a developmental pediatrician to test for ADHD on top of his autism and they had me fill out questionnaires- both me and my sons teacher filled one out. They will not medicate him since he is 4 but was good to have the evaluation at least (though he doesn't have ADHD he was diagnosed with hyperkinetic disorder which sounds similar).


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## alibaba24

Sequeena I am sorry that so much is going on. It sounds really Isolating and I also would be struggling. Especially given they want to discharge him you must feel completely hopeless My heart really goes out to you. Do you have anyone who will babysit for you so you and Sean could even go out for a night over the christmas period ? I am hoping the new service you have been referred to can bring some type of help in .xx


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## Eve

:hugs:


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## sequeena

Oh wow it's nearly been a year. Is anyone still around? How are you all?


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## Peanut78

I'm here! :flower:


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## sequeena

Hi peanut :hugs: I'd love to start using this group again.


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## Phantom

I'm not sure if I've ever posted here. But my son was diagnosed with high functioning asd this August. I just got a call from his school on Friday about meeting with them to set up some special help for him. I cried when they told me. They said he is very bright so he doesn't need any academic assistance. He just keeps to himself at recess, doesn't have conversations with the other kids or participate in groups.


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## sequeena

Hi phantom :hugs: how are you feeling? Was the diagnosis a shock? It's great that school are going to help. That's half the battle I think. Thomas is very sociable but doesn't often play with other children on break because (in his own words) he likes to play his motorbike game.


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## Damita

I'm here &#55357;&#56842; lilith has been diagnosed with adhd and high functioning autism.

Charlie well he's a long old list hypotonia asd SPD non verbal non eating GDD mentally 12 months old - he's 3 and half now starts school next year ahhhh


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## Peanut78

Hi everyone, big hugs Phantom - it's tough to hear. 

Damita :flower:

I'll post an update from our side in the coming days (major work deadline till Thursday :wacko:). 

Just wanted to say - I would also love to be able to use this group more again :thumbup:


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## sequeena

Damita said:


> I'm here &#65533;&#65533; lilith has been diagnosed with adhd and high functioning autism.
> 
> Charlie well he's a long old list hypotonia asd SPD non verbal non eating GDD mentally 12 months old - he's 3 and half now starts school next year ahhhh

:hugs: have you started the statement process? I was scared for Thomas to start school and refused to send him until he had one in place.

Good luck for you work deadline peanut :hugs:


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## sequeena

So a brief run down of what's going on with Thomas.

After almost 5 years of recurring ear infections Thomas finally has hearing aids and grommet surgery on November 15th. I'm dreading it. He's not had surgery since he was 2 and it was a really traumatic experience.

We still have no full diagnosis for him but we have been on a study for the last year so hopefully there will be an answer soon. The study has been doing exome sequencing on all 3 of us so they should (fingers crossed) find something.

He still doesn't sleep well so I'm doing sleep clinic again as it's the only way to possibly get melatonin. He's calling me a liar though as the last 2 nights he's slept well :dohh:

He has a speech disorder now rather than a speech delay and has been receiving speech therapy in school for the past 2 years. He's come on so much. When he first started school he couldn't say his name. His speech is vastly different to other 6 year olds. I'd say he is still speaking at a 3 year old level.

The good news is he's doing well in school. He's not in any mainstream classes (he's in a unit attached to mainstream) but he's progressing at his own pace. He's even started to read. I'm so proud of him. He can ride a 3 wheeled scooter and a bike with stabilisers. He's doing so much more than we thought he would.

The hardest part is watching him interact with other children. The majority ignore him or tell him to go away. Some have even hit him (I go into apeshit mode at that point). It's because he speaks differently and can't play like other children. It breaks my heart and I'm starting to really dislike other children as awful as that sounds. Thomas is not violent he doesn't push or shout. He just gets too close and doesn't understand social situations. He's so sweet I hate seeing him rejected. I don't want him to grow up being the outcast, being bullied because he's different :cry: thankfully at school that doesn't happen.

He's grown up so much and is super tall.


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## Eleanor ace

Hi, I hope its OK to post here; please let me know if not.
DS (6) has learning difficulties and hearing issues. He is in a mainstream year 2 class with some extra support (he goes to a group for motor skills each morning, he has 1:1 for speech and writing and has small intervention groups for literacy and numeracy, and will attend a group for children with anxiety/confidence issues from next week. I'm very pleased about this last one as DS struggles with asserting his own wants and needs and does whatever other children tell him to do and I worry constantly that he will get into big trouble with this as he gets older and others realise they can easily manipulate him). He currently doesn't have hearing aids, I thought that's the route we were going down but at his last appointment we were told his hearing has actually improved. I haven't noticed any difference, nor has school, but I really hope they are right and his hearing will show an improvement. DS struggles a lot academically but is a really hard worker and never stops trying. 

DD1 (4.5) started Reception in September. She has sensory issues (which have vastly improved from when she was a baby/toddler) and is undergoing assessment for ASD. She is exhibiting a lot of anxiety/OCD type behaviour at school; licking herself like a cat, pulling out her eyelashes and eyebrows, going non-verbal (but talking like normal as soon as she came out of school. We have issues with imaginary friends who she finds very controlling and DD not mixing with the children in her class so much because she gets lost in her own imaginary world. She really likes school though and loves learning. 

DS and DD1 both have iep's and receive SN care; DD is currently on just for G&T but if anything comes of her assessments the school will receive extra funding. They actually both go into year 1 for phonics/reading which is a bit difficult as obviously DS is going down and DD is going up and DS feels upset about it.


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## Shey

My son Jayden is turning 10 in July and has ADHD, High Functioning Autism, Learning Disability and developmental delayed. He has an IEP at the school he goes to. He also gets occupational therapy and speech. He does get frustrated and struggles but he does work hard to get good grades. He just got an award the other day. I'm so proud of him.
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## ClairAye

I know this thread isn't active but in case it ever is again...

My DS is 6.5 and diagnosed with ASD & Tourette Syndrome (which is WAY more complex than just tics) and is currently being assessed for ADHD.

He was born seemingly healthy but at 4 weeks old developed Sepsis due to urinary tract problems. He dealt with kidney problems until around 5 years old and it was at that time all of the other issues that had been present for the last 2 years snowballed and got really bad.

We're newly diagnosed but he developed his TS at 3 years old so we've been dealing with it for a few years now.


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## kealz

Hi Clair

My oldest DS is 6, has ASD and hypermobility and goes to a special school.

It sounds like you’ve been through a lot. It’s so hard sometimes. :( I’ve never heard of TS in one so little so that must have brought it’s own challenges.

My youngest is 3.5 and although he’s been through the same assessments, he’s been signed off and attends mainstream nursery.


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## ClairAye

kealz said:


> Hi Clair
> 
> My oldest DS is 6, has ASD and hypermobility and goes to a special school.
> 
> It sounds like you’ve been through a lot. It’s so hard sometimes. :( I’ve never heard of TS in one so little so that must have brought it’s own challenges.
> 
> My youngest is 3.5 and although he’s been through the same assessments, he’s been signed off and attends mainstream nursery.

It sure has been a crazy ride so far! I hadn't either, honestly I didn't know much about it minus the media's portrayal until he'd had it for about 2 years.

That's good news about your youngest! My son only has a choice of one school really but there is another close that is mainstream but also accommodating to additional needs kids, I've been thinking about looking into moving him, he attended their nursery due to living in the catchment then but his school can only really cope with him rather than be equipped to let him flourish. Did your DS previously attend a mainstream school?


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## kealz

That’s exactly how my son started off. He attended the local day nursery and they just coped with him - he hardly made any progress. Then the local SEN team were called in to observe him and he was offered a place at a special nursery which was amazing. But we were lucky have access to that facility. From there, they secured him a place at his special school. 

Our kiddies deserve more than just being ‘managed’ don’t they? If you think your DS could make more progress somewhere else, then go for it and won’t hurt just to make some enquiries. :thumbup:


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