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Original poster

Am I being too precious about son with disabilities?

63 replies

TaylorsVersion1 · 04/07/2024 13:51

Hello all,

My son is 3 - he has a diagnosed genetic disorder, GDD, Hypermobility and he's on the ASD pathway.

He can't walk, he's mobile and can "walk" on his knees, there's nothing physically wrong with him but the physiotherapist seems to think it's sensory and he'll just walk in his own time but the paediatrician seems to think he won't walk until he's at least 5.

He's non verbal and has limited understanding.

He cannot dress or undress himself, he's still in nappies and doesn't have the understand enough to potty train yet.

He really likes his own space and becomes distressed if anyone tries to come near him. He really prefers to be on his own.

Has eating difficulties in the sense prefers safe beige food but sometimes will refuse to eat all together and requires a lot of time.

He's on a behavioural report at nursery because he keeps hitting out.

He struggles with nosies, routine changes, lack of focus.

Sorry I don't want to go on and on - he's development age is 15 months.

We've had a meeting with the educational psychologist this morning as we're in the process of getting him an EHCP and we asked about the type of school he may go to and we said we'd prefer a specialist school but she said we should consider both so I'm looking into it and I was wondering does anyone have any experiences with a child like this in mainstream school and was I being a bit precious to rule it out?

It's hard and I genuinely don't know what to do.

OP posts:
IdLikeToBeAFraser · 04/07/2024 14:23

Mmm, my gut says that you should insist on special school from the start. from the sounds of things, it's unlikely he'll be fully mobile, or toilet trained by the time he starts, so you'd be setting him up for a very difficult start.

having said that, there is a boy in DS' year who has been with him throughout primary who had a much lower developmental age. He definitely was mobile and, I believe, toilet trained, when he started school though so that is different, but he has done well in mainstream school and is still in mainstream school with DS now in high school - they've never been BFFs but they have always had a friendly relationships and still do.

So I'd say be open, BUT don't let the LA fob you off because it's easier just to stick him in a mainstream school.

Nosweetpeas · 04/07/2024 14:21

Boots really helped my hypermobile DD too. Although they were reluctant to give until she was walking. But to answer your question my autistic DS is in a mainstream school with a specialist school attached to it. He really struggles in the mainstream classroom. Friends with similar need DC in specialist schools are thriving. Learning really is fast paced in mainstream. IME the authority push mainstream to save money. I'd continue with specialist if the option is available to you.

Mustreadabook · 04/07/2024 14:16

I know it's not what you asked but my boys used to walk around on their knees for about 6 months that was all they would do and were eventually diagnosed with hypermobile ankles. Have you tried fitting him with boots instead of the early walker soft shoes? Once they had boots my sons started walking on their feet which strengthened their ankles and then they didn't need boots.

ArseInTheCoOpWindow · 04/07/2024 14:13

My ASD Dd walked on her knees everywhere. She grew out of it eventually.

Comedycook · 04/07/2024 14:13

Fwiw, all parents I know who have DC with sn have had to fight and argue for absolutely everything their child needs

Darkfire · 04/07/2024 14:12

You are being asked not to rule it out as there aren’t enough spaces in specialist school.
Keep pushing for what you believe he needs.

BusMumsHoliday · 04/07/2024 14:11

I think you can consider and visit both types of schools but do not let the LA put you off if you think a special school would be best. We never know how SEND kids are going to develop but at the moment it sounds like your son will need considerable support at school. So this will be either an extensive support package in an mainstream school or special school.

Just to say, have you looked at SEN nurseries near you? We have one near us and the staff are amazing (my DS with ASD has interventions there and I know other children who attend). Your DS shouldn't be on a behavioural plan if the hitting is connected to his disabilities.

Comedycook · 04/07/2024 14:11

Sorry reading my post back that sounded incredibly blunt and unsympathetic....not the way it was intended at all.

Comedycook · 04/07/2024 14:10

I'm not an expert at all but based on your description of your ds I am really struggling to see how he could attend a mainstream school.

And no you're not being precious at all

bossybloss · 04/07/2024 14:07

You are not being precious, just advocating for the most precious thing in your life. Good luck 🤞

BuyOrBake · 04/07/2024 14:05

My dc started a special school at 3 and in my opinion the earlier a child gets specialist intensive input the better their outcomes. DC is now 16 and I cannot express how great the school has been for him.
Visit schools and get a real feel for them.

Original poster
TaylorsVersion1 · 04/07/2024 13:56

TorturedPoetsDepartmentAnthology · 04/07/2024 13:53

You are not being precious, you are trying to do what is best for your little boy. When is he actually due to start reception?

He's due to start reception next September but we should have the EHCP this September.

We ended up doing it ourselves as you need to apply for mainstream and specialist schools around January time so wanted it in place before then.

OP posts:
TorturedPoetsDepartmentAnthology · 04/07/2024 13:53

You are not being precious, you are trying to do what is best for your little boy. When is he actually due to start reception?