No support to some child disabilities

[B3ck89]

Hi all
So my son is 7 and was diagnosed just before he turned 4 with global development delay, he is around 3 years behind - and he can be rather hard work.
I see so much support for children with autism and adhd. But where is the support for gdd, it’s a little disappointing when I really could do with advise/support but I don’t even know where to turn.
All I get told is that gdd is like an umbrella and covers a wide range of things.
He had seen a paed who insists he only has a delay.
He has a EHCP so he does require quite a big support

Sorry I don't mean to sound rude but you think there's loads of support for ASD and adhd? I'm at my wits end with lack of support for my ds who's on a length waiting list to get back under CAMHS. We have virtually no support and it's like pulling teeth getting an EHCP or getting the teachers to all sing from the same hymn sheet!

That said he was originally diagnosed with GDD but that changed to ASD and various other diagnoses at age 7.

I do think there is yes, in my area there are workshops and meetings for parents to children with asd/adhd, even the internet there’s so much but not for a child with gdd.
I can’t find anything local that relates to my son

I suspect the sad truth is that there just isn’t the resource to support everyone who needs it.

Might be a naive question, but could you not start your own local support group? Maybe through Facebook or similar to try and bring parents together to share experiences?

I can’t find anything local that relates to my son

The difficulty with GDD is, like you've already said.

All I get told is that gdd is like an umbrella and covers a wide range of things.

Whilst a group may offer support and advice to some people with GDD. It is inevitable that there will be many others who will find it unhelpful, as their situations and experiences are so very different.

All the parent carers forums I attend are for any parent carers irrespective of the diagnosis (or lack of) their child may have.

I think you may have a bit of a “grass is greener” view on things when in reality it isn’t. Support is lacking across the board and in most places it only comes about when charities and volunteers make the effort to make it happen.

@CitadelsofScience - I think it’s depends the area you live in.

My son is 5 & has severe ASD, non verbal, severe learning disability. He gets tons of support. He had occupational therapy, play therapy, SALT. Full time 1:1 from 2 at pre school for 2 years until he went to his special needs school with a EHCP.

He gets hydro therapy, horse riding (as it helps calm him).
He has a special needs dentist, he’s seen a special needs optician as none of it can be done normally.
Iv been to so many workshops and groups.
He still sees a pead once a year.

Why don't you contact the ASD groups and ask if you can join them? There will be quite a lot of crossover of issues/worries and a bank of knowledge from the parents with older children.

My DD has ASD and learning disabilities and I've realised I need to join anything and everything in the hope of under the system better. None of the groups specifically fit with my DD's diagnosis. Riding for the Disabled has been invaluable as an opportunity to meet parents of children with a large range of issues.

I've got one child with autism, one with global development delay and one with physical disabilities. The support is about the same I think but with my child with asd the contact details were all handed to me at the diagnosis appointment. With the others I had to go looking for it. There are gdd support groups on facebook and if you go on your local council website and search for local offer you should find details of activities locally for children with disabilities. My 11 year old struggled for years with mainstream activities but now he is involved with disability sports he is loving it and smiling. Sometimes you end up travelling all over the county to do something that mainstream children can do 5 minutes away for half the price but it's worth it. My son did kayaking in the Easter holidays and he is going to do wheelchair football in May half term.

Part of the problem is perhaps that (from what I can remember) many/most children diagnosed young with GDD go on to either 'catch up' or get another more specific diagnosis.

Maybe think about where you think your dd's needs fit best and approach supper groups for those conditions, but as a PP said, there are usually broad based parent/carer groups and if there aren't you can set one up! There are often local Facebook groups.

Support not supper!

Op if you are on Facebook there is a group.called "my child has global.development dslay" it may be useful.for you? My son has severe and learning disabilities, he goes to a special school, but tbh other than appropriate schooling we are very much left to get on with things .

Severe autism*

Trust me, there's nothing for asd unless they also have other issues. We fought for 6 years to get a camhs appointment and that was only due to self harm.

The people with support here have severe autism with learning delays, the majority of asd kids attend mainstream schools and you fight all the way for adaptations, never had respite etc. Currently fighting for disabled students allowance...

GDD is generally a stepping stone to an autism diagnosis with educational delay.

OP, sorry that you’re struggling. I agree that support is sparse, and that’s being polite.

Be reassured, there’s fuck all support for asd either, when you boil it down. What there is is a lot of referring for services you can’t access/don’t exist. Support at school (TAs) that’s so sporadic it just becomes confusing to the child or young person and cutting of local transport assistance and support groups due to funding issues.

Oh, and paper shuffling and ticking boxes. Lots and lots of that.

So OP, my DS has severe autism and he’s slipped through every net going in terms of services and support. I wish I could help you but I can’t. If it helps, you are not alone, love.

Look on Facebook for operation diversity

We've been fighting for help and support for DD10 since she was 18 months old.
We are finally going through ECHP now, after she's been educationally failed her entire time at primary school.
It is frustrating, especially as we're still on a long CAHMS waiting list for a diagnosis, so just have GDD as an umbrella one with no help and support, and occupational therapy lying constantly in yesterday's assessment to the point where the teacher that was present wondered if they were looking at the correct child.
I never wanted to apply for DLA for her as I'm on PIP due to a rapidly progressing rare autoimmune disorder and the stress and stigma is awful, but we now need it to pay for private assessments so she isn't failed throughout her secondary education.
You have my every sympathy OP.

Partostrich - that’s exactly what I mean, so like recourses on what can help him and support with people with similar diagnosis, help from pae.
But I was just told he has a development delay, and on your way and that’s how it’s been for almost 4 years

I have every bit of empathy with all of you battling with professionals

MissKitty yes mine has been failed at every point. Because his speech did catch up and he can write and think independently they just left him, saying his anxiety was just naughtiness. He's in year 10 and has absolutely no chance of sitting let alone passing a single GCSE.

I'm so angry at the way he's been let down, I'm angry at the LEA, I'm angry at the teachers who choose, yes choose to punish him like an NT child, I'm angry at everything and everyone. He's falling in to depression and started saying things like he wishes he was dead again.

There is no support here whatsoever unless they are self harming and thankfully that hasn't started again, just the saying he'd be better off dead.

And to everyone can I just throw something in. You can have severe autism but very low anxiety, or you can have as my son is a higher functioning autistic problem with extremely rigid thinking and anxiety that is sky high.

Person not problem.

I do apologise for not making myself more clear