im yet to meet another child like mine

[dottyp82]

my DS has coeliac disease, ASD, complex developmental delay, dyspraxia, encopresis, food phobia and OCD. he is now 7 and try as i might to meet others the same we never seem to be able to, and feel so alone.

also my DD has coeliac disease, possible ADHD, possible dyslexia/general learning difficulties. still being assessed and shes 9

im so tired of appointments and worrying all the time. is there anyone else out there, in the same boat?

No official labels here, but Dd3[8] high IQ on the borderline for ASD, sensory issues and dyspraxia she is aslo hyprmobile and awaiting a physio assessment.

She is actually quite a good eater but only on her terms she touches and smells all her food before she eats it and eats things in order,

She has 2 sisters the eldest [22]was almost Dxed ADHD at 9 but I believe she probably has Aspergers, she is a fussy eater and still struggles to try new foods. She has big issues with scial skills and theory of mind but is a mum and lives independently.

Middle Dd is 15 and has had her issues over the years mainly to do with reading she had tracking issues when she was younger but now refuses any kind of intervention including glasses,[what can you do].

Its hard work doing all the appointments and stuff, I have felt like I am banging my head on a wall at times, Dd3 has started a new school today so we are hoping for some more support. She is a lovely girl but she has been getting swamped in the crowd at school.

Try to take some time out and come on here when you are stressed there are loads of great people on here who can help.

Good luck.

My son has ASD, Global Development Delay and ADHD. I have also never met another child like mine. ASD affects children in such different ways that I don't think you will ever find 2 Autistic children exactly alike and when you throw other co-morbid conditions into that mix then there are even more differences.

I find special needs boards such as this one really helpfull as people don't focus on what condition the child has just the fact that they have one. Life for a parent of an SEN child is bloody hard no matter what the conditions and people on here really seem to understand that and offer great support.

Have ot found/met another child like dd1, she has Aspergers, possible dyspraxia, food issues and low muscle tone, Dd2 has HFA and hyperlexia, i have met people on line with dd's that sound very similar but met very few in RL .

I think the actual dx or sns vary, but we are all going through similar stresses and worries. Its very hard and so isolating.

My ds1 is 9 and has AS, hypotonia, severe anxiety and is gluten free (coeliac negative but paed advised it as there was a clear correlation between gluten and health from his food/digestive diary). ds2 is nt, but has health issues that mean lots of hospital appointments, barely a week goes by without someone having to go for an appointment - or three. I am so with you on the being sick of appointments and the constant worrying.

Keep posting on here, its a wonderful supportive place and there's usually someone who can help if you have a problem or a friendly ear or two when you need to vent.

thanks everyone for all the lovely replies! i feel less alone now :)

Welcome to the gang - make sure you pop in on Friday nights for our weekly moan and chocolate session - everyone welcome.

(It was Thursday last week because I got my days mixed up! )

hello dottyp82. I can relate to the food, dyspraxia and encopresis elements. It does seem never ending at times, doesn't it. I guess that most of us on here have got worn down every now and again with the merry-go-round of appointments.
Welcome to a board where everyone knows that 'going out' for the day isn't as simple as piling everyone into the car and setting off.
Btw, if you can get into London, there is the allergy show this weekend at olympia. www.allergyshow.co.uk/go/coeliacuk
Apparently they give away lots of freebies. I'm going to try to get a DH pass to go at some point over the weekend, and see if i can find anything that makes my/ my DSs life a bit easier.

same here, never found a dc like mine. It is so isolating!! To top that I am also stuck in throughout the day as he also doesn't attend school.

One of DS's speech therapist said "In her 15 years of working life, she is yet to meet a child like DS". But that our DS who has autism. We have not met many children with autism as he is the only one in both my dh's and my side. I think moosemama sums it up nicely for me " the actual dx or SN may vary, but we are all going through the similar worries and stresses".

LOL, SALT also said never met a child like mine and admitted in a TAC she hadn't got a clue how to help him.

I've evaluated all the 'appointments' though and don't go just because I have them. I try and figure out whether or not they will help ds, given that half the people that work with him (aka spending 15mins with him once every 5 months) know less about him than I do now.

our social worker sat in a meeting and told everyone around the table.....you know my case load and out of all those difficult cases, this one is the only one she finds it hard to work with.
The behaviour team sat in a meeting discharging him in front of everyone as all they have done has failed.
The OT sat in a meeting again with everyone and said there was nothing she could do.......she couldn't motivate him.
Now how am I meant to manage him??

wish I knew what that message was

It wasn't about you devient, or anyone on here. It was just a random cut and paste advert.

not so interesting now lol

Hi Dotty. I've got 3 DSs, DS2 is 11 and has HF ASD, he's dyspraxic and very annoying lovely with it. The other 2 aren't DX but DS1 had very delayed speech and is shy and geeky, DS3 is hyperlexic, obsessional and quirky, but quite clever with it.

I'll row alongside you.

DS2 has autism, dyspraxia and plagiocephaly. He has sensory issues and food issues, although I just bundle them together with the autism.

Dotty, sounds like you have a lot to cope with. Like other posters, I've founds every ASD child I've met is different and unique. A few teachers have told us that they've never come across a child more difficult than our DS, lol! So kind and encouraging

Have you got an ASD support group near you? I always find it such a help to talk to other parents, even if their experiences aren't the same. Your DCs are lucky they have a mum who puts their needs first and runs around taking them to the appointments they need.

We recently found a respite care provider that is really wonderful - expensive but you can get referred through social work. Any chance you can apply for some respite? It makes all the difference to get a break once a week and know that you can do something nice for yourself.

no autism group but there is a carer group which is useless and the taxi is always late (they provide) so it not worth going once i get there!

i dont drive and struggle with him in his major buggy, he has slightly bowed legs and cant walk far without being in pain. so i will have to use taxis and buses because my mom works and when she can take us, his buggy doesnt fit in her car