New and needing advice

Hi all
I am a career for my 14 year old son who has autism and severe learning difficulties his assessments say he is around the age of a 4-5 year old he also has low muscle tone in his legs and arms and has a condition called lactic acidosis. Due to the council wanting to send him to a mainstream school I pulled him and now home school him. I get NO help with this and after his diagnosis of autism and Learning difficulties 5 years ago I have had no help or support. I have to lift him in and out the bath and the car and I to his bed and he’s a big strong boy. Does anybody know if I should receive any help with schooling like books or a grant to buy these things as it costs a fortune and also I have back problems and have had operations without success so even help with the bathing him would be amazing. Should I be getting help with him I just feel like we have just been left to it.

Thank you for your time x

Hi Shona,
does your son have an EHCP (education and health care plan)? If so, he can be allocated a personal budget through this to pay for services. If he doesn’t have one, he should have and you can request he is assessed for one.

Do you want to carry on home educating or would you prefer he attended a special school?
If you would prefer this, both the National autistic society and IPSEA can support and advise re getting the right provision for your son.

You may be entitled to support for a wet room which would save lifting him in and out of the bath, or for aids to enable him to be more independent getting in and out of the bath. You need to request an OT assessment for this. Your GP should be able to refer you and in some areas you can self refer.

Physio exercises could help improve his muscle tone and I’m wondering if his lack of ability to get in and out the car and bed is actually more of a motor planning or behavioural issue than anything else. The OT could assess this too and if necessary refer him to physio.


sorry no links, but must go to bed.

Hello and welcome

This is a useful directory of OTs in Britain. Find an occupational therapist RCOTSS-IP

Shona, welcome to the forum. My son has severe learning difficulties, now 40, living in his own flat with carer support. He can’t read, write or do any maths.

You need to aim to get your son back into school by next September. I understand why you decided to home school him, but he needs to have appropriate education. Otherwise it’s going to be more and more difficult for him when he eventually has to leave home because you are too ill or too old to care for him. Were you offered any special needs school placements?
Have you contacted IPSEA? (Google them). They were wonderful when I had problems, and helped me get the funding I needed but it was a big battle.

I read recently that if you home school someone you don’t get an EHCP. You’re on your own.