Mum and carer of 18 year old autistic son

[Guest]

Hello I am Sue and I am new to this forum
I have two children; Sarah is 21 and Joseph is 18. Joe was born prematurely with mild left hemiplegia and epilepsy, and as he grew up it became obvious that he was also on the autistic spectrum. He is high functioning but has some learning difficulties and a fairly low IQ. He went to mainstream primary school with a statement, but had to go to a special school for his secondary education. He left school at 16, wanted to go to college but it really didn't work out for him there. He is now doing voluntary work while we try to get him a paid job but it is proving very difficult. He is also very isolated socially, and gets depressed and very anxious. He is getting DLA and ESA, and direct payments from our local borough.
Can anybody offer me any suggestions to improve his situation? I love him so very much but he is difficult to manage, and I worry a lot about what the future holds for him. Thanks!

[Melly1]

Hi Sue and welcome,

My (ex foster) son is 19 has autism and associated learning difficulties. He was always in special ed and it was a bumpy ride. He finished this summer and SS have hindered plans for his future. He is hoping to start at a new specialist college opening locally in the next few weeks. Next week he starts with a PA (as I teach.) He is bored now of being at home and we have visited all the local places, had days out to everywhere within an hour's drive and he is ready for more. He needs structure and a purpose to his day. Without this and regular exercise he becomes increasingly anxious and challenging. He also craves more social interaction, but of course needs skilled faciliation to make this happen. He is getting bored now of spending everyday with me and because he was a day pupil who travelled out of county to school each day doesn't have school friends etc

Sounds like we are facing similiar issues.

I'm currently trying to help him come up with ideas of what he can do with his PA next week ... not easy is it. Especially since he has been home all summer. I'm wracking my brains for different things they can do together.

What do you use your son's direct payments for?

Melly1

[Tracey]

Hello Sue.

Welcome to the forums.

My son is 9 and has Autism.

Keep posting, lots of lovely people here.

Tracey x

[Deborah Gordon]

Post school services seem to be poor and patchy across the UK.

There needs to be more available in terms of social enterprise opportunities etc but these are few and far between often with long waiting lists.

I've looked at a few community living type places such as the Camphill communities and I quite like the way they work. They aren't perfect but they offer a homely living environment with purposeful work and activities to do through the day. I'd certainly be considering them if I was looking for residential for my son but at present I want (and he wants) to remain living at home.

I often find SW don't even know what's available and I only find out about things through word of mouth. One of our SWs even said she'd learned more from me then she had in her training or inductin within our local authority! Sometimes I think the people higher up like us kept in the dark so we don't ask for things... or maybe I'm just being too cynical!

Hope you enjoy the forums and get some support and ideas through others here.

Debbie

[worriedjohn]

hello and welcome