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Here you'll find advice from parents and teachers on special needs education.

Original poster

Anyone fancy a support thread for parents of severely autistic non verbal children?

30 replies

parrotonthesofa · 14/10/2022 14:04

Hi!
I have a lovely 10 year old boy who is severely autistic, non verbal with a large developmental delay.
We cope ok but I feel like I have no one to talk to who really understands what it is like. I've been in various autism groups but the spectrum is so large that children with the severity of mines needs are few and far between.
He's currently having a huge meltdown, I've tried to help but he doesn't want me there so I've just had to make sure he's safe and wait til it passes. I find it so heart breaking and it all feels every Groundhog Day. Same with bedtime, it is a slog every night.
Anyone fancy joining me for a support thread?

OP posts:
Lesley25 · 16/10/2022 13:36

Can I ask how you cope?
Do you have direct payments for carers?
i started direct payments when ds was 9 and recruited carers from my sons specialist school.
I cope by running . I started the coach to 5k during Covid and never looked back, even though I have flat feet and I’m the least likely runner in the world ever. After a few years it’s helped with coping. The only place I can listen to music too.

maybe we can share tips
on this thread as to how we all cope and what we do. In our world with children at this severity it’s very difficult to find similar people but let’s share what works for us. What we are thinking. What services are available for us and our children.
This would really help me. I’m always conscious that at this level of need , you just don’t know what’s out there, what other people access.

Original poster
parrotonthesofa · 15/10/2022 21:44

Ah yes the teenage years will soon be upon us here too! I haven't given it much thought yet but I'm guessing it will bring a whole set of new challenges.

OP posts:
Lesley25 · 15/10/2022 14:44

I’m here too. My son is 14 and I find at this age there’s very little support for parents. Also I’m at the stage where I have to start planning for adulthood and I know I cannot look after ds at 17/18 but it’s so hard to find anyone that’s been here at that stage.

Original poster
parrotonthesofa · 15/10/2022 08:35

It's hard isn't it!

I do find that most of the time I can just get on with it and find the joy (cringe but you know what I mean) but sometimes I'm just like arghhhhhhh. The worst is the crying when I don't know why and I can't help fix it because I don't know the cause.

OP posts:
SpudleyLass · 14/10/2022 22:26

Hello there

My daughter is 4 and is predominantly non verbal. Our LA has only just this week agreed to specialist provision.

My daughter frequently bites and pinches and the meltdowns are very difficult to cope with