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

[Peanut78]

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 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

 

[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!

Congrats bananabump I was skeptical about DDs hearing test in September. She just got so upset, I worried if the results were accurate.

Sun, peanut I hope you guys get things worked out with schooling soon. I really dread the day DD is old enough

Hey sequeena hows T? Saw some of his pics on FB. He's flippin adorable! Bath pics hilarious, perfect placement of the boat He always looks so happy Congrats on the upcoming vacation

Rach hope Esther likes her new school. I bet she will love going to the same school as her brother.

Tor 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

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]

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

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.

It's hard to see those reports 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.

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.

 

[bananabump]

Peanut I'm glad things are being sorted 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]

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]

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]

girl. Twitching like a squirrel eh? 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

 

[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

 

[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.

 

[nicki01]

Ha ha! Try and keep it short I said! Oops!

 

[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.

 

[sequeena]

Oh hun it's so hard I swear I spend most of my day apologising to people because of T's behaviour.

 

[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

 

[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!

 

[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.