# Support Chat Thread



## Tiff

Hello! :flower: 

I was thinking it'd be nice to have a thread where all of us could chat/vent without constantly having to start a new thread each time. There's lots of days where I could use some :hugs: but I don't always feel that its "new thread" worthy. :blush:

Today is a day that I could really use some :hugs:. It was an incredibly rough night with Claire and I'm feeling quite down and sad at the moment.

How is everyone else doing? How are your kiddos? Anyone (regardless of situation) is welcome to post! :flower:


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## Peanut78

Hi Tiff, sorry you had a "down" day. I have those too :hugs::hugs::hugs: Thanks for starting this thread, I know I will find it useful :thumbup: Don't have much time to post right now, but will be back in here tonight or tomorrow :hugs:


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## sun

:hugs: :hugs: I hope tonight is much better.

Our biggest struggle lately has been with eating. We have another appointment with the dietician and she isn't going to be happy - boo! But on a positive note, B is starting to vary his activities at preschool some! He used to only touch the cars (sort, line them up, etc) but the teacher is starting to get him interested in some other things :thumbup: He has another speech session tomorrow with a therapist who specializes in motor issues (low muscle, etc) so I'm very excited! Other people are starting to understand him more, and he can now blow into his flute and harmonica!


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## Peanut78

Yay, go Bun! :thumbup::happydance:

Tiff, hope you had a better night :hugs::hugs::hugs:

We have the in-laws arriving for 2 weeks tonight. While I love them and am happy to see them, I hate the comments about T. "Oh, so he _does_ understand", "he is so aware of what is going on around him isn't he?" etc (no matter how many times we tell them he doesn't have a cognitive prolem, it's like they don't listen or believe us). Also, the constant talking about how proud they are of his cousin (who they see weekly) and how advanced she is :nope: MIL is always trying to "teach" T things, really basic things which he already knows, it upsets me because it reflects that she really thinks he doesn't understand basic concepts :nope:

Anyway, rant over - I am sure it will be lovely having them here and the kids love it, I just dread the comments :dohh:


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## BlueHadeda

What a great thread! Thanx Tiff!! Hope you've had some better nights since posting! :hugs:

I can so relate to your post Peanut! Even though my daughter doesn't have autism. My in-laws comments also drives me up the wall!! They keep on making light of my daughter's case. As if they think if they just BELIEVE it'll dissapear, then it will, iykwim? I think they're trying to be positive or something, but it comes off as "not realising the extend". If I have to hear one more time how she'll "outgrow" it, I'm gonna explode!! :growlmad: How do you "outgrow" nerve damage? Nerves that are DEAD don't just regenerate!!! :dohh:

Rant over, sorry! :coffee:


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## Tiff

Ugh, had a full reply and then accidently hit the back button. :dohh: Its been one of those mornings! 

Sun - Super glad that B is starting to branch out a bit more! That's awesome! Sorry to hear your dietitian won't be happy at your next appointment.  Is it that B won't eat certain foods, etc?

Peanut - I can SO relate. My parents were like that with Claire before I got our diagnosis. It really upset me too that people were questioning her cognitive skills. My mother and I actually got into it once when I got fed up of her saying stuff like that. It was her cognitive skills that I CLUNG to when everyone else's kids were speaking full sentences and she was barely stringing anything together.

She thought that Claire needed "work" on her shapes/colours so got a bunch of activity books. Claire can't sit for that long yet, she gets too upset. She also knows all of them. But my Mom wouldn't listen when I would say that Claire knew what colours were etc, and thought that it was the books that did it. :roll:

I was also told to "read" to her more, and the reason why she was struggling was because I clearly do not read to her enough. :( REGARDLESS of the fact that my kid can "read" (speak from memory actually) most of her books. Guess how she can do that? Because we DO read to her. Uuuugh. I could rant for days. :haha:

BlueHadeda - Massive hugs! I totally hear what you are saying, unless stem cell research takes off like wildfire then I fail to see how nerve endings are just going to regnerate. Wish there was a way to explain it to them! Like how paralyzed people don't just magically "grow out" of things.

Still be rough here. So sad and angry. :blush:


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## mummy3

:wave: Can I join in?

My son is 4 (5 in January, going so fast!) He has autism and is currently in the school districts special ed ASD immersion programme 5 days a week:thumbup: My youngest is 19 1/2m and we have been given a provisional dx of rett syndrome, she has lost her speech from words and small 2/3 word sentances to nothing but a few sounds and is slowly losing alot of her motor abilities. We have someone coming 3x a week from early intervention to help her. Her neurologist though is having her have a repeat MRI scan along with her brother next month as she had an abnormal one at 6m (she was preemie and it showed delayed myelination, so he wants to check on that to rule out a progressive dymyelination problem). 

Anyhoo, 

Tiff and peanut, I get where you are coming from:hugs: Just because they do not communicate the same way doesnt mean they dont understand! Its that the others with no knowledge of what the disorder entails dont understand! So hard to hear though all the same:hugs:

Blue hadeda, I'm sorry they're just not getting/accepting the reality:hugs: Got to be awful going through that with them all the time :(:hugs:

Sun, I hope the dietician was helpful with the eating issues rather than upset?:hugs: Thats brilliant his speech is getting clearer and he's being encouraged to widen his interests:happydance:


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## Peanut78

mummy3 said:


> :wave: Can I join in?
> 
> My son is 4 (5 in January, going so fast!) He has autism and is currently in the school districts special ed ASD immersion programme 5 days a week:thumbup: My youngest is 19 1/2m and we have been given a provisional dx of rett syndrome, she has lost her speech from words and small 2/3 word sentances to nothing but a few sounds and is slowly losing alot of her motor abilities. We have someone coming 3x a week from early intervention to help her. Her neurologist though is having her have a repeat MRI scan along with her brother next month as she had an abnormal one at 6m (she was preemie and it showed delayed myelination, so he wants to check on that to rule out a progressive dymyelination problem).
> 
> Anyhoo,
> 
> Tiff and peanut, I get where you are coming from:hugs: Just because they do not communicate the same way doesnt mean they dont understand! Its that the others with no knowledge of what the disorder entails dont understand! So hard to hear though all the same:hugs:
> 
> Blue hadeda, I'm sorry they're just not getting/accepting the reality:hugs: Got to be awful going through that with them all the time :(:hugs:
> 
> Sun, I hope the dietician was helpful with the eating issues rather than upset?:hugs: Thats brilliant his speech is getting clearer and he's being encouraged to widen his interests:happydance:

Hi Mummy3 :flower:

Just quickly wanted to add that my son also has delayed myelination, showed up on an MRI when he was ca. 18 months due to motor delays, he was subsequently tested for demyelinating conditions, a massive host of tests, which eventually came back all clear. More later, in a rush now :dohh:
Thinking of you , it is such a worrying time :hugs::hugs::hugs:

Big hugs Tiff, thinking of you too :hugs:


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## BlueHadeda

Mummy3, good luck with the MRI's next month. :hugs: Keep us posted?

I have another vent. Sorry if this is long-winded, but to explain...my daughter's condition damaged the nerves in her sacral vertebrae, that leads to bowel, bladder and feet. She has a very slight dropfoot. Meaning, her toes drop down when she walks. So when she steps through, her foot doesn't step down on the heel first, toes second. The toes drag along pointing downwards and lands toes first, heel second. When she concentrates or walks slowly, she's usually fine, since it's a very, very slight dropfoot in her case. Unfortunately when she gets tired, or when she's running, this happens allot and it makes her stumble, fall down or scrape the top part of her toes or foot on the cement, tar, ground or grass. 

Usually in winter, it doesn't matter too much, since she'll have shoes on, and her knees and shins will be protected by long pants. But it's spring now in our country, and we live in a very hot part of it. The children wear short (uniform) dresses to school, and go barefoot. This week alone she's fallen down at least 3 times already, and scraped the skin off her foot, knees, hand, elbow, etc. Usually when she stumbles she can stop herself from falling down, but about once a day she can't. And if it happens on cement or tar, she gets hurt. It's usually deep scrapes, that bleeds quite a bit, and then she has a scab for a week or longer. Usually this scab gets scraped off a few times before it finally gets a chance to heal.

My heart aches for her, and I don't know how to help her! :cry: The doctors can't do anything. The nerves are permanently damaged, and wearing braces (afo's) is not worth it, since her dropfoot isn't bad enough. Wearing afo's would make it difficult to run. I told her she could just as well stop running herself, then she won't fall so much!! :dohh: But she's such a lively, active little thing, she darts and jumps and flutters from place to place like a little busy bird. :kiss: My husband said he thinks we should get permission from the school to let her wear shoes in summer as well. But it's sad, because she'll be really hot in our weather in socks and shoes. But I don't see much of a choice. :shrug:


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## mummy3

peanut, thanks hun:hugs: Will keep you updated, I'm so worried because she had normal skills, albeit she was delayed motorwise for awhile in her early life as she was preemie and had trouble growing but caught up and then some now is regressing. Did your son have any regression? Also was he preemie? Wr're told it can be normal to have delsyed myelination as a preemie.

Bluehadeda I dont know anything about tethered cord hun, but it sounds like the shoes in winter will be a good plan, as long as the rest of her uniform is not going to over heat here then it sounds like the lesser of 2 evils to stop her falling and hurting herself:hugs: She sounds like such a happy busy little girl :cloud9:

Hope everyones having a better time of it:hugs:


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## Tiff

Massive hugs Blue. :( Reading that made my heart sink too, its hard when you have to sit back and watch how things that other kids would have no issues with be very tough for your little one. :hugs:

Its been a rough few weeks with Claire, when she gets overloaded she screams at the top of her lungs... its ear splitting and physically hurts my ears. Since she doesn't understand how to use language properly its so hard to try and figure out what the heck is going on. She does talk, and can do the basics for sure. But once you get into a bit more complicated stuff then she starts to lose the plot.

She was diagnosed with moderate-severe Autism... hoping that when we FINALLY get picked up for some speech therapy and occupational therapy it'll help. When she gets frustrated she'll pick her lip to the point of bleeding and pull her hair out. Hate watching that and not knowing how to get through to her when she's that agitated.


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## BlueHadeda

Poor Claire! That must be so frustrating for her. :nope: How long will it be before you can start speech and occupational therapy? My daughter had it last year. They said she was about 2 years behind on most of her communication levels. I hope it'll help Claire to be able to express herself. Won't it maybe help if you develop a "sign" system in the meantime where she just show you what's upsetting her in those situations? Like "I'm hurt", "I'm sad", "I'm hungry", etc.? Or is she a bit young for that?


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## Tiff

We've tried but she gets frustrated with it. :( She goes in for another assessment with the SLP and OT on the 8th of November so that's good I suppose. Getting tired of waiting, we've been waiting to get her into speech therapy for almost 2 years now.


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## mummy3

Tiff, Claire sounds very similar to my little guy:hugs: Do they have special ed preschool where you are that does the therapy in there? My son gets speech and OT help at the preschool, they take him out the class for the sessions and then bring him back. He's a year older than Claire and in that time with the extra help he's coming on awesome so hang in there hun:hugs:

2 years is a crazy long time to wait though! :nope:


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## sun

Wow Tiff - You've had to wait 2 years! :nope: I waited 9 months and thought that was bad enough! He's been in speech therapy for well over a year, but is only going every second week now. We're emphasizing on getting his muscles stronger so he can pronounce more sounds.

To answer your question about B's eating, he is really really picky about food. It stressed me out because so many people will tell me that he is picky because I give him a choice of food rather than laying down the law. I hear "he'll eat when he's hungry" ALL the time. But actually he won't! I have seen him not eat for 2 days without problems - he gets crankier than usual but will not touch something he doesn't want. 

Some of his eating issues are:

Will only eat a handful of foods and generally only asks for plain rice cakes 
Will not touch meat or veg (other than carrots or occasionally red pepper)
Will not eat mixed foods - each ingredient has to be separate
If there is an ingredient he doesn't like, it can't be on his plate
His iron is low and we are working on upping it, but it is hard. He will eat crap though (granola bars and cookies for example) and my mother and MIL often give him that stuff. This totally makes things worse as when we are there he won't eat anything but granola bars.
Sometimes (very occasionally) I can get him to eat some totally uncharacteristic things though - like samosas (the wrapper, not the interior) and spring rolls. No idea why, but he used to like them quite a bit pre-pickiness (before around 14mo). When he was a baby he would eat anything as long as he could chew it.

I have also had a longstanding problem getting him to drink enough since I started giving him water at around 7-8mo. At the moment he gets quite a bit of his water consumption from crushed ice which he will eat. I have heard that eating ice is also a sign of low iron, so I'm really hoping we can get something to help.


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## Tiff

Yeah it really sucks having to wait. :( Its so confusing because cognitively there is not a thing wrong with her mind at times, she knows and understands everything. But for her to turn around and try and verbalize it is where the disconnect is. 

She'll tell us that she "doesn't want" something, but always gets confused with the contexts. She was being saucy the other day and I said "Claire, that's enough". To which she replies "I don't want that's enough!" lol. :haha:

Ahh Sun, that's gotta be rough and scary. Its frustrating when people put their 2.5 cents in without really thinking it through. I'm CONSTANTLY having to remind people that "typical" parenting strategies do NOT work with Claire. My Mom is forever telling me to just DO something. But I can't! For a typical kiddo, yes you can absolutely lay down the law. They WILL eat when they're hungry. But B isn't a typical kiddo.

What irritates me the most is when I actually take the time/effort to explain all that and I still get argued with. :dohh:


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## Aunty E

Hi all :) 

Mummy3 - hope you get a good answer soon on your little girl - there are plenty of conditions aside from Rett Syndrome which have regression as a symptom xx

Tiff, sorry you're having to wait so long for speech therapy. I know I complain about our speech therapist (because she is a cow) but I am grateful for how quickly we've been seen.

Blue - I read your daughter's story and am so impressed at your persistence in getting a diagnosis for her. 

Sun - Imogen is generally very good with food, but she will not drink anything but squash from her cups. She was completely obsessive about milk in bottles, but we made a decision that the teats were not helping her speech or emotional development (they were a bit of a crutch when she was upset/tantrumming) so bottles are gone forever. she will drink no added sugar squash until the cows come home from a very specific sippy cup though (hard spout no spill, from tommee tippee).

Imogen has her next three sessions with SALT next month, and the educational psychologist on 14th. Her nursery teacher was very nice at her parents evening, but really got up my nose with phrases like 'children like this' and going on and on about her not being potty trained. No. She's not. But plenty of neuro-typical children aren't potty trained either.


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## mummy3

Eating issues are a minefield:hugs: I've read that about craving ice when pregnant, could be the same with kids!

Loving the "I dont want thats enough":haha:

I hope Eilidhs provisional dx is wrong, its not just her language thats gone though its her motor skills as well, she cant even stack 2 blocks now for example and is getting very clumsy but we've been very lucky helpwise, within 2 weeks of her early intervention assessment we had speech therapy and an infant teacher set up to help her at home:thumbup:

Thats unfair comparison potty training wise, my little guy was completely potty trained before 2 and he's autistic, just happened to have a fascination with the toilet:winkwink: They're all individual:cloud9:


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## Midnight_Fairy

Hello, can I join?? xx


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## Tiff

Of course you can hun! :hugs:


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## Sovereign

Can I say hi too? We dont even have q diagnosis yet but I know without a doubt that Charlie is on the autistic spectrum. We are waiting for his first appointment but I have done so much research that there is no way Charlie isnt autistic. 

And it breaks my heart.

Xx


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## Tiff

:hugs: It definitely is heartbreaking for sure. I found the whole process to diagnosis horrid and drawn out. :(

Hate that anyone needs to use this thread, but happy you're here! (If that makes sense)


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## sun

Welcome Sovereign! :hugs: Hope everyone is having a good weekend! xx


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## mummy2o

Yes, although I have come to realise my son will never be normal. He's 5 and a half and you think me knowing he has autism for a couple of years would get easier. I think its the fact he went to a mainstream school and I can see how far behind he is compared to everyone else. Its just a waiting game to see if his language improves if not I have to think about putting him in a special autistic school attached to a mainstream school next year. Its not that bad, just a bit annoying changing school really. But at the end of the day its whats best for him and although I love his current school I see it from their point of view to.


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## Sovereign

Thanks for the welcome guys!! We've had a relatively good weekend, a few meltdowns but nothing major. I just wish he would eat something proper!!! Its bonfire night tomorrow (for those not in the UK) and he hasn't been as upset over the fireworks going off early as I thought which is good. How was everyone elses weekend\/


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## Sovereign

mummy2o said:


> Yes, although I have come to realise my son will never be normal. He's 5 and a half and you think me knowing he has autism for a couple of years would get easier. I think its the fact he went to a mainstream school and I can see how far behind he is compared to everyone else. Its just a waiting game to see if his language improves if not I have to think about putting him in a special autistic school attached to a mainstream school next year. Its not that bad, just a bit annoying changing school really. But at the end of the day its whats best for him and although I love his current school I see it from their point of view to.

Aww, yes I can see why that must be hard. Hopefully he'll get better with his talking and won't have to move. Fingers crossed x


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## Eccleston2011

Hey guys, I kinda just need to vent...
For those of you that dont know my 6 month old daughter had two strokes in utero and doesn't move her left arm. I have been busting my butt this last month trying to get her into a new therapy called the anat baniel method or the Feldenkrias method... Well today my sister in law had her daughter and I couldn't help but feeling mad and a little jealous, that she gets a perfectly normal baby that she can enjoy, while I have to sit here and worry about my daughters future. Will she be able to talk, walk, and have a normal life? I feel like I am the only one concerned about her. Everyone else says she will just grow out of it... but you don't just grow out of brain damage. Its sooo frustrating and I just feel all alone in my efforts to help my daughter.

Sorry, rant over.


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## BlueHadeda

Oh, :hugs: Eccleston! How awful that your poor daughter had to go through that. Do they know what caused/triggered the strokes? 

I wonder why people seem to think you'd welcome their opinion that "they'll grow out of it"? Maybe that's what they hope? Maybe it makes them feel better if they refuse to acknowledge that it's permanent? But us, as parents, we don't have that luxury. We need to deal with that fact, so that we can go forward and find help for our children.

I totally understand your envy of your SIL. I too have had that. But you know what I've learned with having 2 special need kids and loads of other health problems between the 6 of us in our family? It's that almost NO person on this earth is born without some defects. We all have something that doesn't work perfectly. Some of it you can see with the naked eye. Some you don't. Some you find out at birth, some only during childhood or when they're an adult. I do hope your SIL's baby is as perfect as she seems, but maybe she's not.

And enjoy YOUR baby even though she might not be perfect, she's yours and she's beautiful and with a mother that fights so hard for her like you do, she'll do just fine. :hugs: These special babies, they're made from stronger material than we realise.


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## Midnight_Fairy

Not had time to read through yet but I will grab a cuppa later and have a read. 

My son is 8 and was diagnosed at 5 (although the process started much sooner- about 2yrs 9mths) My son is in a mainstream Junior school. We have trailed and errored various programmes etc and I am willing to help anyone that needs advice. I work for the council as a parent rep for my area and I am gaining quite a good insight into school and preschools and help available. If you are struggling please feel free to ask xxx


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## faun

I need to get this off my chest so here goes, i hate that no nurserys will take my son, yes he is autistic, yes he can be violent, yes he is non verbale , yes he still wears nappies but he is my prince and it breaks my heart that people look at him and see a problem child he is 3 for gods sake! I am already tired from fighting for 18months to get him seen and start the official diagnosis just one more box to be ticked in march then we find out where he is on the spectrum, i don't want to have to battle everyone just to get him a place at nursery that the government has said should be available to all children from the term after their third birthday. he had a place lined up to start in january but after meeting him at some sessions they have decided they are no longer able to offer him a place. Every where is over subscribed and Billy keeps getting rejected as soon as they see how he is even the school his sister goes to has said they can't take him as can't cope with additional needs. I just want to cry and scream at them how can they not see it is discrimination. My specialist health visitor can't even get him a place. On the plus side his play therapy to prepare him for speech therapy is going well and he loves Sue his therapist he even runs over to see her which is a huge deal for him as he won't even look at most people :)

I am so glad this thread has been started as even though we all have our own worries and battles for our children it is one place we can be totally honest with how it makes us feel and support each other. I will have a read of the rest of the thread in a bit and reply to others but must go as Billy is climbing the curtains again *sigh*


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## Midnight_Fairy

Hmm, they shouldn't be able to just reject him. As far as I know the law states they have to accept all children regardless of needs.

What are the reasons for refusing him?

Please contact portage as they can liase with preschools and arrange 1:1 cover is needs be xx
https://www.portage.org.uk/


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## faun

We have been refered to portage and just waiting for an appointment or someone to come see us. The nurserys won't take him because of his behaviour it is extremely challenging and they said they won't be able to keep him or others safe if they take him all 4 nurserys have said the same thing. They have all suggested the specialist nursery but as you can imagine it is full with a huge waiting list my health visitor is trying to pull some strings to get him in but she isn't hopefull. It just makes me sad really as i'm sure if the normal nursery took him they would get funding for extra staff etc it just seems like with so few places and loads of children they can cherry pic who they want to take. Will give portage another ring and see if i can speed things up. Thanks Midnight x


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## Midnight_Fairy

definitely call them again. I was at a lose end until they intervened. Let me know what they say xx


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## mummy3

Off to catch up:thumbup:

been a long weekend, littlest ended up at childrens hospital saturday night with what turned out to be a huge abscess on her left inner thigh. She doesnt feel pain like a typical child so gave us no indication, she's had a fever for a few days but we put it down to teething :( We got 10days of antibiotics and to follow up with pediatrician within 3 days, got appointment tomorrow at 2. I've never seen anything like it before, not sure if they're going to drain it or if antibiotics could clear it, its near 3in!

Mummy2o:hugs: Its hard seeing the comparisons:hugs: My little guy (5 in jan) will be going to the ASD classroom for kindergarten, which is bittersweet but I cant imagine swapping from a mainstream classroom:hugs: I hope if he has to change that it isnt too hard on him.

Eccleston:hugs: Thats a totally understandable reaction:hugs: Blue says it perfectly:cloud9: 

Sovereign, how's his appetite today? 

Hope bonfire night went ok for UK ladies?! 

Midnight, how is mainstream school going?

Faun, thats awful the nurseries are being like that! I hope portage helps:hugs: Thats very positive he's responding so well to his therapist:thumbup:


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## Tiff

Eccleston - :( I don't understand the "they'll grow out of it" either. :shrug: Grow out of what, exactly? Because that's a thing we see regularly when people have strokes - they "grow out" of the damage done. Honestly, a little bit of "hey, I understand you are scared and we're scared too"??? :dohh:

Faun - I'm no help when it comes to schools/nursery's across the pond. :( Hope Portage helps you though. :flower:

Mummy3 - Agh, that's the worst! Claire doesn't feel pain like us either so we know when she actually says something its bad. :hugs: Hope the antibiotics help her abcess. 



Claire's been sick which isn't fun, on top of our time change. She's starting to feel a bit better but I'm keeping her out of pre-school this afternoon. She starts a music therapy class tomorrow morning which I am SUPER excited about. Music is definitely Claire's "thing", so this should help. Its a readiness for school program so through music they'll help teach her the routines of classrooms etc. 

Then on Thursday she has her reassessment with her SLP and OT. I'm *hoping* that this is when they'll let me know when Claire will be picked up for regular therapy. I was told she'd be picked up before the end of October and here we are into November. Not much mind you, but after waiting for 2 years I'm starting to get irritated. :blush:


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## BlueHadeda

Tiff, that music class sounds great!! Hope she has loads of fun tomorrow. :thumbup:

Mummy3, your poor baby! Hope the antibiotics works quickly. My daughter is the opposite, she overreacts to the slightest bit of pain. Accordingly to the phsychologist it's because she had to go through so much in her life. I confess that I got irritated at times blush:), but after reading about your daughter, I'll try and see the good in it. 

Those of you who struggles with your children's lack of a varied or plentiful diet. What do you do? Do you give the child what he prefers to eat, even if it's not as healthy as it should be? Or do you keep on providing only what you prepared for the family meal and if he/she doesn't eat, let them go without? My 11-year old has this problem. He just refuses to eat if it's not something he likes. And what he likes, is extremely limitted and usually either bland, or sweet. He's very underweight, but healthy. He doesn't have autism. He has epilepsy, but I doubt if that has anything to do with it. He was diagnosed with sensory integration disorder as a baby, especially around the mouth, so maybe this is still a problem for him.


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## Sovereign

Bluehadeda, I confess just days I end up giving him what he will eat which is crisps and chocolate atm. Makes me sound such a bad mother but I just want him to.eat something!


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## sun

Bluehadeda - My son is much younger but has sensory issues and is very difficult when it comes to food. We are under the care of a dietician because he is low in most vitamins (especially D) and iron. He will only eat crunchy things with flavour - so his diet is very limited. He also has issues with food touching each other and texture. I am trying food chaining with him at the moment and it is going ok. Basically I will take a food he likes (ie: mac and cheese) and have a goal food (like pasta with meat sauce) and slowly work from one to the other. I also offer him things he is ok with and present them in small portions in individual containers. If he was a typical toddler I would probably let him go without, but he has no problem eating nothing if the alternative is something he doesn't want. He has eaten nothing for a day on many occasions. 

Tiff - I hope Claire is feeling better. Bun is really into music as well - we are sending him to an elementary school that has a strong focus on it. :)

Mummy3 - I hope Eilidh is much better - how scary for you! xx

On a good note - I got him to eat some quinoa at dinner last night!!! He likes edamame and chick peas (sometimes) as long as I really spice them up. So I spiced up some edamame and chick peas and mixed the latter with a little quinoa. He ate a few spoons of the chick peas (no edamame), 2 carrots and the pecans. I know it's not alot, but it's a huge improvement. And a surprise - I didn't expect him to eat a thing but the pecans and maybe a carrot. This is seriously the best meal he has eaten in weeks. Yay! This is how I serve his food - in very small amounts separate. It looks like more food than it is - there is about a heaping tablespoon each of the beans.


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## BlueHadeda

Sovereign, I don't feel like a bad mom, and that's precisely what I did on many occasions with my son. So I don't think you're a bad mom either for doing what needs to be done to get something in their tummies! Not everyone would understand how difficult this can be. Sun, like you say, my son would also go for literally days without eating _anything_, if the alternative is things he doesn't want/like. I feel more awful for the days I've sent him to bed on an empty tummy, than the hundreds of times I gave him biscuits for dinner, or a chocolate. (Usually after a heartbreaking session of pleading and trying to get him to at least take ONE bite of dinner. :cry:)

He started to skip lunch most days this year until I started to agree about a month ago, that he can have sweetened dried cereal for lunch. :wacko: I do feel awful about it, but he just can't play tennis (his afterschool activity), write exams, do homework, etc. on an empty stomach day after day after day!! At least dinner time is already a million times better now than it was when he was age 3-6. It's not the fight it used to be. He still eat less than his 4-year old brother, and doesn't eat everything (especially veggies!).

Sun, I like that food chaining idea, I'll try that! Thank you. Good luck with your son, sounds like he did really well last night! The pecans is great, I wish my son would eat nuts. Even salted would be fabulous. But the only way he'll eat them is if they're covered in chocolate. :dohh:


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## sun

I hope it works out. I am glad my kiddo likes nuts - he will eat them 60% of the time as long as they are salty and toasted until they are crunchy. But even if he does eat, it usually isn't more than a few bites. 

I am the same though with letting him eat whatever as long as he eats - that meal above looks really healthy and great but it isn't typical of what my son eats. I usually offer something like that but often he won't touch it at all. He will always eat rice cakes (which have nothing in them) so sometimes all he wants is rice cakes and crisps for days. If I say no (which I have done) he just doesn't eat anything. 
It doesn't seem to bother him at all :nope: 
I feel so bad when I pick him up from preschool and they tell me he didn't eat and that he must be full from breakfast. He has never eaten breakfast in his life - he usually doesn't put a bite in his mouth until mid-afternoon. :(


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## BlueHadeda

Oh Sun, that's so sad. :cry: Only a mom of a child that doesn't eat can understand what it does to you when you send your child to school on an empty stomach, and he comes back hours and hours later and still hasn't eaten _anything_. It breaks one's heart! 

My husband is strict, and has started to force (not physically) my son to eat a few bites before going to school. It's awful having to do that, but the days are long and the work he has to do is so difficult and complex at his age, that he *needs* the strength that comes from food. We would've been less strict if he would always eat his sandwich at breaktime (2 hours after school started). But some days he wouldn't eat breakfast, nothing at breaktime and then come home lunchtime (in our country school comes out before lunch) and refuse lunch as well!! :nope:


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## sun

How is everyone's LOs doing this week? :hugs:


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## BlueHadeda

It's going well with us, thank you! Except for the most awful tantrums. I completely lost it last night with my daughter, when she disrespected me for the 3rd time in a row. I feel so awful for loosing control like that. :cry: It sometimes feel like I'm in this neverending cycle of trying to build my relationship with her, then loosing it, feeling awful, crying myself to sleep, then try again the next day to build my relationship, loosing it, etc. How on earth do you manage a 9-year old's tantrums?!?! :shrug:

Apart from that, it's going well. It's _almost_ school holidays for us (summer holidays of almost 2 months!! :happydance:). And we found a type of pantyliner that doesn't irritate my daughter!! :happydance: I'm so happy about that, because it saves SO much money on underwear!!! :thumbup: We used to throw away about 5 or 6 panties a week. Now, it's more like 2 or 3. Long ago, I stopped trying to wash it with the hand. I just couldn't stomach it anymore after a few years, so my husband told me to just throw it away and replace. But darn it, it's expensive!!! So the pantyliners (Dry like me) helps loads. Though, they're also expensive, especially since she needs at least 2 a day.

How's it going with you, Sun?


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## Peanut78

Hi All, :hi:

Blue, that's great you found a panty-liner that works well :thumbup: Where will you spend the summer holidays?

You are certainly not the only one loosing your rag and feeling guilty about it :hugs:. T is a remarkably stubborn child and I am already not a very patient person, sometimes I just loose it and feel terrible afterwards :nope: 

We had the in-laws here a few weeks ago and it was really lovely. There was only one stupid comment from FiL: "he really does understand so much doesn't he" - I didn't say anything this time, but honestly yes, why wouldn't he, how many times do we have to go over this?! Otherwise it was great, the kids had such a wonderful time :thumbup:

We had our parent - teacher meeting at T's nursery which went really well. His current teacher has a qualification in special needs which has made such a big difference. She said he's making wonderful progress and really trying, his pencil work has improved, as have his concentration levels, he is very participatory and his sounds and attempts at imitating sounds are coming along better. I know he is very happy there and stands at the door every morning with his little bag waiting to go to nursery :cloud9: 

Eccleston, I can completely empathise with that feeling of resentment. I remember sitting in my car crying outside T's nursery this time last year (after a bad meeting with his then teacher) watching all the other mum's picking up their children and resenting the fact that it was just so "easy" for them and they didn't have all that worry day in and day out. :hugs: Blue puts it well thou :thumbup:

Faun, did you get the nursery sorted out?

Mummy3, how are you? How's your daughters leg? I thought I had answered your questions, but can't see it so maybe I didn't - sorry :dohh: My son was not a preemie, and no he didn't regress, he has just been slow to acquire or perfect gross and fine motor skills all along. When do you expect to know more from your daughters tests? :hugs:

Tiff, how's Claire?

Sovereign, how's your little lad?

Have a great weekend all :kiss:


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## Midnight_Fairy

Hi all. We had peadiactric app the other day and she seems pleased with his progress. He is insisting on wearing ONE certain green top every single day, even under his school top and pyjamas, I am managing to get it off him in the promise it will be washed and dried in under 2 hours but now my washing machine has broke :S Oh man, he loves that top!! 

People dont understand though, they say oh just take it off him but with ASD it is really not that simple.


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## sun

Blue - You are definitely not the only one who loses it sometimes! :hugs::hugs: I am a very patient person when it comes to my son, but I still get so so frustrated sometimes and find myself snapping at him. Or even worse I know that I should just back off but I don't and end up in a battle of wills (where I will always be the loser - like trying to make him eat). Then afterwards I feel so guilty. 

So glad you found some pantyliners that work though - and that holidays are coming up!! It's a long wait for ours over here haha. But the christmas break is right around the corner - that should be nice!

Peanut - My son always got the surprised reaction when he showed a hint of intelligence too :growlmad: Now that he is talking I don't get those comments as much though! His low tone means there are sounds he can't say though, and certain people (MIL!) are always either making fun (not in a mean way) or correcting him. I hate it as I don't want to do a thing to discourage his speech - he can talk all day if he likes (music to my ears!). It is fab that your LO is imitating sounds! :thumbup: And I love that he is at the door waiting to go and that the nursery seems so good for him. It is so amazing when you are dropping them off somewhere you know is really making a difference.

MF - I had to laugh at the green top comment! Coincidence - my son has worn his green monster shirt for weeks! Luckily I have an alternate shirt he will wear while I do a wash - but he has to be in a good mood for the switch. I know what you mean about people understanding - I find generally people think I'm too lenient and I need to stop "letting him get away with it" xx

It's 3:30pm here and my son is napping without having eaten a thing apart from a bite of muffin :( I try not to make it a big deal, but lately he has been specifically asking for things to eat - which I make. Then he won't even take a bite. It doesn't sound like that big of a deal, but it gets me so frustrated! I know his levels are low and he needs to eat, but he is fine with nothing. :nope: And we got some bad news that his preschool teacher (whom we LOVE) will be leaving in December. I almost cried when she told me - she has been so fantastic for him and he is finally starting to open up a bit to her. And in a few weeks she'll be gone! sniff.


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## BlueHadeda

Oh no Sun, that's so sad about the teacher going away. It took my daughter a full 6 months at age 3-4, before she said her very first word at the school. It would've made life very difficult if the teacher then would've gone away. Will it make a difference to your son's eating if he _helps_ prepare the food/muffins/etc. with you? And maybe make everything smaller? Like mini-muffins?

Peanut, we're only going camping North of Pretoria with my family for a few days, the rest of the time we'll stay at home for the Desember holidays. Family will be visiting us here. We prefer to go away (to the coast) during the March/April holiday. I'm really looking forward to just spend a few weeks not driving anywhere with my baby. She's had a hard few months where I always had to wake her up because it's time to fetch the other kids from school/playschool/afterschool activities/sports/etc.

Midnight, that's great about the pediatric appointment that went well. Good luck with washing the green shirt!! No chance of finding a similar one as a back up?

Peanut, that's also great that your parent-teacher meeting went so well. And that you had a great time with the in-laws (despite there lack of full understanding).

And LOL yes, Sun, I agree, what child wants to constantly hear their mother correct their speech? My MIL also keeps on telling me to correct my daughter's "mistakes". She replaced a lot of letters, like a "t" instead of a "k", etc. But I didn't want to all day go around and correct her as if she can't do anything right, iykwim?


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## mummy3

I meant to update, been hectic here!

Eilidhs leg abscess has cleared, but not before another trip to the urgent care:dohh: Her and her brother are going for their MRI scans tomorrow, thankfully its a 9am start so the fasting shouldn't be too awful but I know she's going to fight to bf:baby:

MF, my son is exactly the same, although with him atm its a long angry birds blanket:haha:

Peanut, how cute him waiting with his little bag:cloud9: Glad your nursery report is so positive:thumbup:

Blue :argh: I hear you on preteen girl tantrums :shock: My 8 year old is also getting to be a master at these, stay strong:hugs: Brilliant that you found a panty liner that works as well:thumbup: Enjoy your holiday:hugs:

Sun :( I'm sorry his teacher is leaving and that you're having a tough time with eating:hugs: Will his school help? We have food issues with my son, more sensory wise though, and the school have us send stuff in and try and work with him. Its scary when they dont eat:hugs:

Hope everyone is well:flower:


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## Peanut78

Good luck tomorrow for your kids MRI's Mummy3, sending you love and hugs :hugs::hugs::hugs:

MF, not quite the same, but I spent over 20 GBP buying a used taggie/ comforter on e-bay :sick:, to make sure I had a spare of the one my youngest insists on sleeping with (if it's ever in wash etc he goes into total meltdown). They don't make the exact same one new anymore. I was shocked to see how many parents are clearly doing the same in desperation one was selling for 35 GBP (it only retails new for 12.99 GBP!) :dohh:

Sun, sorry to hear Bun's teacher is leaving. I hope he gets and equally good replacement :hugs: The feeding issues must be very stressful to deal with. Last year we went through a long cycle of illness - ear infection, then chest infection, then ear infection again etc and for a couple of months my son was completely off his food. I found it tremendously stressful :nope:, I can't imagine how hard it must be to deal with that on a daily basis :hugs::hugs::hugs: You are so innovative in your approaches to addressing it, I love your idea about the food chain/ box - looked sooo scrummy :thumbup:

Blue, quite jealous of the upcoming holidays, wish I was heading out to SA for Christmas :happydance:


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## BlueHadeda

Hahahaha...mummy3, I LOVE that door-smiley! :haha: That's about how I feel when my daughter starts with one of her tantrums.

Good luck with the MRI's tomorrow! And especially for the results afterwards. Keep us posted? :hugs: Your babies will be in our thoughts and prayers. Hope they (especially your daughter) will be okay with the fasting.


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## Tiff

:hugs: :wave: Hi ladies! 

Sorry for not updating. Just not in a place right now where I want to talk about the stuff with Claire that much. Do you guys feel like that at times? We got her reassessments done a few weeks ago, she hasn't progressed at all. :nope: So at the age of almost 4 she's capable (with a lot of help) to do things a 2 year old should be able to do.

It'll come I suppose but I'm really tired of these stupid assessments. :blush:

I hope you all are doing well, I've been thinking of you and your LOs even if I haven't been commenting. :flower:


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## mummy3

Tiff:hugs::hugs: Will she be offered more help now? Its hard to hear for sure:hugs:

Blue, it is a perfect smilie for those tantrums for sure:winkwink::haha: How are you holding up?

Peanut, good plan at the replacement comforter but :shock: at the price used vs new!

MRIs went well this morning, they weren't too grumpy! We got a call back from the neurologist already this afternoon, little guys was normal:thumbup: Eilidhs showed abnormalities in the left frontal region, he's going to go into more detail at our follow up on the 12th dec.


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## sun

Tiff :hugs: Totally understand that you aren't up to discussing everything at the moment. We'll be here to listen when you are though. xx

mummy3 - So glad everything went smoothly with the MRIs! Did they have to be sedated for them? My son is scheduled to get a sleep-deprivation EEG in December and I'm not looking forward to it - he doesn't do well with medical procedures at all. 

Blue - I feel the same way about my daughter. She's just turned 1 and has always been woken and dragged around to my son's appointments, preschool, etc. I'm so lucky she's such a relaxed and happy baby.

Normally I don't like winter, but today we had our first real snowfall (as in the snow stayed on the ground). We woke up to a blanket of snow and it wasn't too cold out (-4C). My guy was so so excited! Getting him into snow pants was a bit of work, but he had a great time outside :thumbup:
Making me excited for the christmas holidays!


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## GypsyDancer

Can anyone post in here no matter what medical condition our los have?
I dont really come into this bit normally but injust need to get out aload of feelings im keeping in and i dont know where else to put them without coming across harsh and judgemental (im not)..im not expecting any replies i just need to put it all down as a release iykwim?
My toddler has cystic fibrosis and has recently grown a nasty bug in his lungs called pseudomonas..so his level of treatment has been upped and im just feeling like itsball abit too much right now..i know this feeling will pass but i just have this horrible knot in my stomache right now and just feel like crying..
Ive just been reading a thread in toddler section about nursery and people have been discussing their los constantly catching illnesses and chest infections and saying how its just how it is and they have to catch them at some point..so they would send los in even if ill
I just feel so sad and angry that its no big deal to them..but its serious for us and its taken over my life..im too scared to put my lo in a nursery for that reason..he has no friends because i always worry that kids will have coughs and the parents wont understand and im so fed up of hearing people on my fb putting statuses about their poor children having colds and how sad they are for them.
.id love for my toddler to be able to have a cold without having to increase his constant antibiotics and worrying if itll go to his chest :( worrying that one day he'll catch that one bug thats just too much for his little body and send him into hospital..
I guess im just terrified of him being anything other than safe and healthy in my arms..i love him so much and i just wish some people would be greatful that their los only have a cold..
Agh im feeling slightly better now! Thankyou..
Also id like to add..i know its not nice when our los have colds/illnesses..i have a baby without cf and i still wouldnt want him to have a cold ect but being honest..i wouldnt be worried about him like i would my toddler if thay makes sense? X


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## sun

GypsyDancer - Ofcourse anyone can post! :hugs: I know which post you're referring to in toddlers and I totally agree with you. My son is in a preschool with 6 other kids and we all know each other and are good about not coming in when sick. But I know lots of other places (especially public daycares) where people just load their children up with meds and send them in even though they know they shouldn't. :growlmad: I know that often the parents run out of sick days etc, but it's still wrong. My son has asthma so gets problems with bronchitis and chest colds and having to go to hospital - with him the coughs last weeks and weeks so I also get annoyed when people just say it's good for their immunity. Sure, if a cold lasts for a short time and they're fine. I am sure if I had a LO with CF I would be the same as you and not want them to go to nursery - his asthma is scary enough. 
Lots of hugs - :hugs::hugs:


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## Peanut78

Hi GD, sending you big hugs :hugs::hugs::hugs: Although my son's issues are different (he has a neurological condition which affects his motor planning) I know how it feels to walk around with a knot in your stomach. :hugs:

I was randomly chatting with our nursery manager a while back and she also said how common it was for parents to dose their kids up with calpol and send them to nursery. How totally irresponsible :growlmad: I don't know much about CF, but would something like Sun mentions in terms of small group of children (whose parents you know and are familiar with your son's condition) to meet with once a week or so - both for you and your son? 

:hugs:


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## Tiff

:hugs: GD, of course you can share in here! Its a safe place to be able to vent without hurting anyone's feelings. :flower:

I would probably feel the same if in your shoes as well. 


So in talking with my RT about Claire's stuff, I found out the other day that those yearly assessments IS in fact them "picking up" Claire. :nope: So upsetting, that means that we don't get any sort of therapy for her until our funding applications have gone through. :(

I keep getting told by her RT when we pick her up from preschool that she NEEDS self regulation therapy asap as she can't handle change and gets so wired that she can't function. They also think she might have ADHD but I'm going to fight that, I don't see it. 

Sad and feeling like unless we have thousands of dollars we're not going to be able to get therapy for her. :cry:


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## Peanut78

Tiff, I'm so sorry to hear that :nope: I can only imagine how frustrated you must be feeling :hugs: How long do the funding applications usually take? 

We are extremely lucky in that our private health insurance through OH's employer covers everything (ST+OT) because we have a diagnosis from neurologist. Without that we would never be able to afford it in the long run either. My OH considered applying for another job in a different organization a while back and we concluded he simply couldn't as we would loose coverage for therapy :wacko:

An ST we saw _once_ also suggested T may have ADHD a while back, when I discussed it with his regular therapy team they said it was ridiculous and he was just being a normal 3 year old who isn't always able to sit still for an hour to complete an activity he clearly wasn't interested in. They also said sometimes people over-analyse children who have a known issue and disregard what is also "normal" child appropriate behaviour. If you don't see signs of ADHD in Claire, I seriously doubt it's there (unlike other people who don't deal with special needs, I think we have some idea to also identify "warning signs" and symptoms). 

I don't know anything about self-regulation therapy (so hope this doesn't come across too ignorant and annoying!), but would it be possible to pay privately to see a therapist once or twice to get some ideas on techniques or work you could be doing with Claire at home in the interim until your applications are sorted and you are able to access more regular therapy?

I so hope you get the funding you need asap, it's awful to feel so powerless - sending you massive :hugs::hugs::hugs:


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## Tiff

Not sure how long, or if we will even be approved for them. :shrug: Its all a waiting game right now I suppose.

We can go privately but the cost is astronomical here. It'll be about $700 just for an initial assessment, then looking about $150-$300 a session that isn't covered by any benefits. She needs to be going at least once a week (more would be helpful) in order to get herself back on track.

I guess Self Regulation Therapy is a bad term to use, more that she can't regulate herself at all when she gets upset/worked up. She's back to picking her lip until bleeding almost non stop these days as well as pulling out her hair. :( Heartbreaking.

Sorry to just dump this all in here. :blush:


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## sun

:hugs: Not sure where you are in Ontario, but where I am there are also long wait times to get into the system after diagnosis. My friends son was diagnosed with moderate/severe autism 6 months ago at age 3 and they are still waiting. In the meantime they are paying out of pocket for speech therapy (he is non-verbal). In some ways we were fortunate that Bun was able to get into the system so young (14mo) because of his other developmental delays - so we were able to get speech right away. Otherwise we could never have afforded therapies on our own. I wish I had any suggestions to offer. I do agree with Peanut about working at home. I actually found that once I had an idea of how to help, the work I did at home had a huge effect. Would it be worth it to get a only a few sessions a month, then work at home in the meantime based on the therapy that they are doing in the session?

Lots of hugs :hugs::hugs:


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## BlueHadeda

Gosh, I'm shocked at the private costs!!! It works very much different in our country. You can go through the state, but that also has long queues, etc. Most people in my community, either have private insurance (very expensive monthly contributions) for medical costs at private institutions, or they pay out of their pocket. To get an assesment, would be about $200-$250 (american dollar) and a session per week is anything between $20 - $80, with most of it around $30-$40. Still horribly expensive if paying out of pocket, but at least possible in severe cases to get a diagnosis and do 1 or 2 sessions just to get an idea of what excersizes to do at home with the child. 

It shouldn't be so hard to get help for your child. :nope:


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## CoffeePuffin

Can I join in? My girl has a cleft palate, it's obviously not anything major but she is classed as special needs and she'll need an operation in March to repair it. 

I'm getting annoyed at how people look at me in public and the comments I get because I feed her with a bottle that I have to squeeze, they think I'm force feeding her when I am most definitely not. She has to have special bottles to feed. They also tell me I'm holding her wrong because I hold her upright to feed as stuff comes out of her nose because of her cleft and she can choke.


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## Peanut78

CoffeePuffin said:


> Can I join in? My girl has a cleft palate, it's obviously not anything major but she is classed as special needs and she'll need an operation in March to repair it.
> 
> I'm getting annoyed at how people look at me in public and the comments I get because I feed her with a bottle that I have to squeeze, they think I'm force feeding her when I am most definitely not. She has to have special bottles to feed. They also tell me I'm holding her wrong because I hold her upright to feed as stuff comes out of her nose because of her cleft and she can choke.

Of course you can join! :kiss: I know what you mean about people looking at you funny for things you have to do to enable your child :nope: I found my mum trying to feed my son differently (i.e. more solid food when his ability to chew was not yet there), he was still quite young because she felt that was "age appropriate" despite what I had told her about his feeding issues at the time :nope: Somebody at a birthday party once said to me "does he always eat like THAT"... It's not helpful, and quite surprising I must say - I would never say something like that to anyone (even before having my experience with my son)... :dohh:

Hang in there hun, I totally get the annoyance :hugs::hugs::hugs:


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## BlueHadeda

Welcome Coffee! :hi:

I can only imagine how difficult it must be for you and your daughter, especially at feeding times. She's such a cutie pie, how awful that she has to go through an operation at such a young age. Your nerves must be shot!! Will it be a long operation?

I've tried (invain) to ignore people's comments and looks. I'm sad and embarressed to say that it (still) bothers me. I try to let it slide off, but sometimes it hurts. And sometimes I resent people their normal/typical children. :blush: Even though I have 2 "normal" children myself. :haha:


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## Tiff

Welcome Coffee! :hugs: Of course you can join in.

I can't even imagine what it'd be like to have to deal with that. I too try to shrug off people's really awful comments or looks but its super hard!!!!


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## CoffeePuffin

BlueHadeda said:


> Welcome Coffee! :hi:
> 
> I can only imagine how difficult it must be for you and your daughter, especially at feeding times. She's such a cutie pie, how awful that she has to go through an operation at such a young age. Your nerves must be shot!! Will it be a long operation?
> 
> I've tried (invain) to ignore people's comments and looks. I'm sad and embarressed to say that it (still) bothers me. I try to let it slide off, but sometimes it hurts. And sometimes I resent people their normal/typical children. :blush: Even though I have 2 "normal" children myself. :haha:

I'm absolutely dreading it, I'll be a nervous wreck. Not sure how long the op will be but we're meeting her surgeon on friday along with a speech therapist, orthodontist and other people who will be involved in her care. Even though she's having her repair at 6 months, she will be under the cleft team until she is 18! Which makes me really nervous about what difficulties may lie ahead..

Thank you everyone else for your replies too.


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## sun

Just popping in to wish everyone a lovely holiday season! xxx


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## Tiff

Ditto! :flower: 

Its been a challenging couple of weeks with Claire, she's not adjusted to having to leave at a moment's notice with showings etc (trying to sell our house). Fun times! :haha: We also got denied for PC Charity funding so back to the drawing board I suppose. :(

Happy 2013 to everyone! :hugs:


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## BlueHadeda

Awww Tiff...:hugs:

Same here - happy new year everyone! Let's hope and believe 2013 will be a good year for us all, but especially for our beautiful, special LO's!


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## Phantom

I'm not sure where I belong yet but I thought I would say hello because i browse here frequently. My 16 month old son isn't walking yet and the pediatrician has told us his muscles are weak. He is being tested for genetic abnormalities and Fragile X syndrome. Mind you, at 14 months he started crawling at 15 months he started pulling up on everything and is now starting to walk along the couch. :shrug: So he is learning. He is also very sensitive and doesn't eat properly. We are taking him to see an eating team. He is very sensitive and has chronic constipation. For all we know he could be fine but we're kind of playing the waiting game right now because he's so young.


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## BlueHadeda

Welcome Phantom! :hi:

We all know about that waiting game. :-( I hope your son will turn out to be all fine. Good luck with all of it! :hugs:

How do you treat your son's constipation? My daughter goes through phases of this. It started when she was only a few weeks old (even though she was exclusively breastfed). Hers are caused by damage to the nerves in her back serving the bowels, due to a tethered cord.


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## Phantom

Right now we are giving him this cherry flavored jelly that helps soften his stool, but it isn't really working and its very hard to get him to take it. He will go days pushing. He turns red, moans, pushes like crazy and nothing. Then eventually he will start to sweat and moan and push for a good 5 minutes and a huge (and I mean HUGE) boulder will come out. It looks so painful and I wish I could help him. Then we repeat the pattern. The pediatrician thinks his bowel is weak like his other muscles which is causing it.


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## BlueHadeda

Phantom said:


> Right now we are giving him this cherry flavored jelly that helps soften his stool, but it isn't really working and its very hard to get him to take it. He will go days pushing. He turns red, moans, pushes like crazy and nothing. Then eventually he will start to sweat and moan and push for a good 5 minutes and a huge (and I mean HUGE) boulder will come out. It looks so painful and I wish I could help him. Then we repeat the pattern. The pediatrician thinks his bowel is weak like his other muscles which is causing it.

Yes, that's how my daughter was as a baby!! I too felt so so sorry for her. And the size of what comes out of her now is astonishing, because she was impacted before so her colon is stretched out. :-( I've stopped giving her anything at the moment, so I'm looking for something new to try. If only she would allow me to give her the lactulose suppositories, maybe we'd have more success. Good luck to you, I hope you'll find something that works well for your son!


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## lilbeanhoping

Hi ladies.
I just popped in and saw your question about treating constipation.
Have u tried psyllium fibre? 
My foster daughter gets super constipated, she's a teenager so we just give her a tablespoon scoop in the am mixed in her cereal and usually another tbsp in her yogurt or applesauce snack later in the day.
You can mix it in with anything. 

We started it as my mom actually swears by it. It's an easy on your system type fibre.
It works amazing for her! Shell go pretty much every second day with us doing that andit isn't HUGE. If we don't it's HUGE and hard....like we have to either break it up or let it soak because it won't flush it's that bad.


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## BlueHadeda

lilbeanhoping said:


> Hi ladies.
> I just popped in and saw your question about treating constipation.
> Have u tried psyllium fibre?
> My foster daughter gets super constipated, she's a teenager so we just give her a tablespoon scoop in the am mixed in her cereal and usually another tbsp in her yogurt or applesauce snack later in the day.
> You can mix it in with anything.
> 
> We started it as my mom actually swears by it. It's an easy on your system type fibre.
> It works amazing for her! Shell go pretty much every second day with us doing that andit isn't HUGE. If we don't it's HUGE and hard....like we have to either break it up or let it soak because it won't flush it's that bad.

Thanx! I've made a note of that, and will get my daughter some. I'll introduce it slowly though, because she actually gets loads of fibre in already, and doesn't drink enough fluids. So it's a bit of a catch 22. But maybe it'll work as well for her as it's working for your foster daughter.


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## lilbeanhoping

Aparently, dont quote me ud have to research, but ive been told with this kind of fibre it doesnt "plug u up" more if u dont drink enough water. Which is why we tried it because at school she doesnt drink that much. Hope it works :)


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## sun

About psyllium - Because it gels (like flax or chia) you can make it into desserts like smoothies and puddings that you can eat with a spoon that are delicious and super good for you. They also give a little more liquids for kiddos that don't drink enough!


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## Tiff

Hi Ladies!

We've been in the process of moving so no Internet and I despise trying to type out on my tablet. :blush: How is everyone doing? :mrgreen:


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## BlueHadeda

Aaahhh, this thread died down! :nope:

I'm in need of support and was wondering where I could vent when I remembered this post. Not sure if anyone wants revival? Anyway, here goes. My 5-year old son was diagnosed with an extremely rare heartlung disease. He needs futher testing before we'll know exactly how serious his case is. At this point, all I know is that it's incurable, life-threatening and progressive. But, there's a chance that his case might not be as serious, with the hope that it may halt and even maybe improve with correct treatment. I'm hanging onto this, because I don't know how to handle the other option. My daughter's special needs (for which I joined this thread) was never life-threatening. It was rare, it was awful, it took forever to diagnose. And her life aint exactly easy. But we never thought we might loose her altogether.

So I'm hanging on by a thread and was hoping to hear how other mommies cope on those days you don't know how to put one foot in front of the other? How do you lift yourself out of the deep dark pit on those days?


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## Tiff

Oh hun, I'm SO sorry!!! :(

Yes, absolutely vent and post away! I find it hard at times because when I post, her issues seem more real so when I'm low about them (if that makes sense?) I tend to shy away from here.

But how devastating! I'll be keeping you and your family in my thoughts and prayers and I hand on heart hope it will be okay. Post whatever you want, when you want. We'll be here to support you. :hugs:


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## Eccleston2011

Oh sweetie, just reading that made my heartache for you. You will definitely keep you in my thoughts and prayers.

Post as much as you want here, Ill listen! But I'm afraid any advice I could give would be terribly difficult and not very helpful. But getting your feelings out can be really freeing and none of us will judge, I would bet we all have had days were we didn't want to get out of bed and face the world.

I recently posted a plea for prayers because we found out that my daughter isn't growing and it is probably a growth hormone deficient that will require daily shots and I sat and cried because I couldn't imagine putting her through that and daily therapy but I got reminded that our kids are true super heroes and will face anything with a smile on their face.


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## Peanut78

dearest Blue, I'm so sorry to read your news, you must be feeling quite overwhelmed right now - sending you massive hugs and thoughts :hugs::hugs::hugs:

Are you seeing the specialists at Sunninghill? They are top notch, the Walter Sisulu centre has such an amazing global reputation. We saw one of the cardiologists there (trying to remember his name - will pm you). As you know when T was first found to have his issues at one point they weren't sure whether it was a progressive disease (i.e. de-mylinating condition), for 10 days we held our breaths while we waited for test results not knowing what we were potentially dealing with, but knowing there was a possibility it could have a very bad outcome. It is beyond overwhelming :cry: :hugs: Stay close to your DH and talk to each other as much as possible. I pray your little boy has the best possible outcome :hugs:


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## Janers

Oh Blue, I am very sorry to hear that, and I really hope you get the best news possible. I wish I had some words of advice, but all i can say is post as much as you like, and you'll have support from lots of other ladies including me.

I'll be thinking of you, your family, and your little boy.


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## sun

I'm so so sorry to hear what you're going through with your little boy :(
I agree with all the other ladies though - post here as much as you need to! We're here to support you as much as we can :hugs::hugs: Thinking of you and your family - hugs xx


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## BlueHadeda

Thank you everyone. I knew posting here would make me feel better, because the people on here understand. Like Eccleston said, even when there's hope for treatment, the pain that that might cause our children can be overwhelming. It scares me to think what medications, treatments, prosedures, etc. might lie ahead for my son. But it helps to know we're not alone with these extra worries about our children.


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## BlueHadeda

Hi everyone! Just an update. We saw the ENT today, and my son most definitely has obstructive sleep apnea. x-rays shows very enlarged adenoids, and he has already facial structure defects due to not getting airpressure in the airway between nose and throat. It stunted the growth of his nose/upperjaw area (so he now has a severe underbite). It's fortunately easily fixed (hopefully) by scraping the adenoids to open the airway up. He's going in for the procedure in 2 week's time. It'll be quick and it's a day procedure. Then we'll need to wait 2 months before taking him back to the cardiologist, to see if his enlarged heart has shrank and if the pulmonary hypertension is better. So there's good hope!! :happydance:


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## Janers

So glad to hear that! I am happy to hear its a day procedure as well!

Glad you updated!


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## Tiff

Excellent update hun, be sure to let us know how it goes! :hugs:


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## Peanut78

Amazing news Blue! :happydance::hugs::happydance::hugs:

Good luck with the op, let us know how you get on :hugs:


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## smileyfaces

Great news Blue. Big hugs :hugs: xx


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## Eccleston2011

Yay! Im so happy for you!


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## BlueHadeda

Hi everyone! Just another update on my son. He had his adenoids removed 2 days ago. It was almost completely blocking his upper airways. ENT believes he might be allergic to something and took some bloods. 

What should've been a very quick and easy and almost risk-free operation turned a bit scary when the anaesthetyst told us that it's a big deal for a child with his heart-lung condition. Fortunately, everything went well and even though he had to stay a while to be monitored, his heartrate and oxygen levels recovered well. We had to let him sleep on the breathing monitor (his baby sister's!) because they were scared his body might go into shock. But he's been fine and slowly improving and recovering at home. I don't see any improvements on his other signs of the disease, but it's very early days. We have to see the ENT in a month's time, and the cardiologist in 2 month's time.


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## sun

That's excellent that he's doing well and I hope he continues to improve. Hugs to you both!! x


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## Tiff

Goodness, that must have been so scary and stressful. :hugs: I'm glad that everything is okay for the here and now! :hugs:


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## AP

I didnt even know this was here :dohh:
Blue I've just caught up and its so good to hear there has been some positivity!


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## Janers

That does sound scary, but i'm so glad to hear it went well! I'm glad your LO is at home recovering!

I hope he continues to get better!!

:hugs:


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## BlueHadeda

OMW, I had to search for this thread!! No one else needs some support or just a vent session?

I've been *extremely* scarce on BnB, for various reasons. Missed this site!! Anyhoo, I thought I'll come and update a bit on here. 

My son's pulmonary hypertension has resolved completely!!! :thumbup: Just a few tiny left-over signs that will dissapear with time. Even his enlarged heart is back to normal size! :happydance: We're so very relieved and happy about this. We have really dodged such an awful bullet. Thank you for all the prayers and well wishes. I do believe in good karma and silent prayers from all over the world, so I'm really grateful to everyone.

Unfortunately, his symptoms of tiredness and even some heart palpitations hasn't resolved. So it's assumed that it was never caused by the PH. Thus, we're on the search for more answers. So far, he has been diagnosed with a thin heart wall, but it's still not the cause. There's also a little bit of doubt to what his one pulmonary/heart artery is up to. X-rays has been taken, and this coming week we have to send 3x of FMU for unialysis to the lab. Also, some more bloods. And a sleep study in a few weeks time. We just have to be patient and believe that whatever we'll find, won't be a big deal and easily fixable. My son is doing well despite all of it. He's happy, not as tired as he was shortly after the adenoidectomy, and definitely not "on death's doorstep", so I'm sure he'll be fine. We just want to sort this out before he starts (our country's version of) Kindergarten in 4 months' time. We have gathered a lovely group of specialists around us that's helping, so I'm sure it's just a matter of time until we know if/what is up with this strange tiredness.


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## sun

Wow BlueHadeda - that's such fantastic news to wake up to this morning! :hugs:hugs:
To have something that could have been so serious resolve itself is simply amazing. I really hope you find out the reason for his fatigue and that he feels 100% soon. So glad to hear this great news!! xo


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## Janers

Great news! You must be breathing a huge sigh of relief!

I hope your LO's fatigue is sorted out quickly!

Thanks for updating us!


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## Tiff

Wonderful news BH! :wohoo: What a great thing to read!

We've been hit or miss here. Claire started school this week. Upside: She's got an EA that she only has to share with one other kiddo... so that's good. It was a stressful summer waiting to see if she would get one or not.

She seems to be adjusting well to school, her teacher and EA seem nice. :mrgreen:

Just now waiting for ABA therapy to start. It just seems like its a never-ending waiting game these days!


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