To wonder if anybody else is in this position?

[fadedafternoons]

I have an adult child with special needs. His needs are not such that he qualifies for (or would accept) additional help, but they are severe enough to completely cut him off from the world, if that isn’t too paradoxical.

I have no idea what he’s going to do and I am desperately worried.

I wondered if anyone else was in the same boat with their adult or near adult son/daughter.

Hi OP,
I work at a place that offers short breaks for adults with learning disabilities. Some of our clients are high functioning with autism or aspergers or Downs syndrome. Some clients go to day centres, some recyling/gardening projects/ some volunteer in charity shops and some have paid work (although this is rare).

Despite the high functioning ability of some of our clients they are entitled to help and benefits. The allocation of nights in short breaks is via the local authority. Many have individual budgets to spend on care and support (although I am not involved in the finance side just care). Some choose to spend theirs on one on one support to access social activities in the community.

You and your son are entitled to a needs assessment and carer's assessment. Ask your local authority for this and the allocation of a social worker. I would definitely say that those families that know their rights and fight for them get most - don't take no for an answer.

No really sunni that wouldn’t be at all appropriate for him, thanks though.

I think Sunni has some great advice, namely a carers assessment and a needs assessment. It’s hard to say what he can do or what would be appropriate for him without knowing him or his needs, my younger brother has myotonic dystrophy and communication delays, he’ll likely never live independently and will always need care and support (he has no concept of danger, for example). He’s almost 15, and my parents are working with SS to establish what comes next as he gets older. We’re hoping somewhere residential, with perhaps an opportunity to volunteer with kids/animals as he loves both.

I understand that orange but my ds doesn’t quite fall into that category.

It’s really depressing. I feel his life is over before it’s even properly started. There’s nowhere he fits and nothing he can do.

What does your son want - assuming he can understand the concept? You mentioned he wouldn’t accept help/support, so I assume some understanding of his special needs?

What everyone else wants really. Job, home, family.

What kind of job - is it doable with training or support? What’s preventing him from enjoying life? Does he have a hobby? People with special needs can and do have fulfilling lives you know.

Of course, but he doesn’t.

I cannot honestly think of any work he could do, he’s poor socially and doesn’t understand nuances at all.

His hobbies involve exercise but he has a tendency to overdo it and harms himself.

I'm
Not but I expect I will be in the future . My son is 8 and is mild to moderate .. dh is a high but not mega high earner and I imagine we will get nothing but can't afford assisted living at £1000 a week .. future looks worrying to be honest .

Please explain more about your son as I can't understand why you think no services/benefits can help you or him.

You say he would like to work but you can't think of anything that he could do. There are services that exist solely to support people with special needs and disabilities into work. If his difficulties lie in social interaction perhaps physical work or computer work.

I think you are understandably very worried about your son but this is contributing to you feeling quite negative and helpless. If your son is not Neuro typical but there are no services or support that can be of any use to him I would be very surprised.

At our short breaks service some clients require no physical support at all. E.g. at bedtime they might just say goodnight and go and get themselves ready for bed and go to bed - their assessed "need" being socialising/making friends and their parents/carers getting the chance to have a break or go on holiday.

Would living alone but in"supported living" be right for him? In my area there is a friendship/dating service that exists to support people with special needs to form relationships. They offer a chaperone if required. There may be more services of use to you than you know. Find out about everything you can and give them a chance.

Sunni, I’ve tried. He won’t accept help because in his eyes he doesn’t have special needs.

Sunni, I'm not sure you realise how restricted funding is in many areas. That, plus there is a big gap between the people that qualify for support and those that are able to live full and meaningful lives independently. Those in that gap are reliant on loved ones, and those that don't have loved ones just have to manage until things become so bad that social care will intervene.

Can I ask how old your son is faded? Does he have a diagnosis, was he able to attend mainstream school and did he gain any qualifications? Just to get an idea of where he is at.

That’s correct mrs, he is 21.

He does have a diagnosis of autism but he attended mainstream school and got 9 GCSEs. He is far from stupid.

However he can’t behave appropriately in social settings and he is extremely vulnerable. He hasn’t been able to settle into any further education and interviews haven’t produced anything.

Hi OP, please don't give up hope. Although he may be awkward in social settings, that doesn't mean it can't be changed with a bit of help. I work for the NHS and our organisation works closely with our local college, recruiting apprentices who struggle socially or have learning difficulties. A few years ago we recruited a young chap who had autism, and having never met someone with autism before, I have to say I was a little naive. He didn't speak, wouldn't make eye contact, but was a computer pro and would and could do anything you asked of him. With a little patience he gradually came out of his shell. He would say good morning, make tea/coffee and welcome visitors. After two years, he left us as a happy, more confident individual who didn't walk with his head down constantly.

What I'm trying to say is there are organisations/partnerships/education facilities which will have come across all walls of life's. I now have a nephew who is autistic and that time spent with our apprentice enabled me to show my brother that there is a future for him, despite his reservations.

It is difficult. I genuinely can’t think of anything he could do.

Have you tried? Spoken to any local charities or organisations that may support individuals with his diagnosis? A college or university which he could attend? Is there any support group for adults with his diagnosis?

Of course.

I wish you and your son luck OP.

I don’t honestly think there’s anything anyone can do.

What about supported employment? Our council has a business which builds and renovates furniture, radiator covers etc. I've had great help from that department with my disabilities even though I'm in a mainstream job. They could give advice and assistance. We also have support for those in college with an ASD diagnosis.

He’s been in college but it doesn’t work very well.

The problem is he often won’t accept help. He’s very difficult to explain.

People have made some great suggestions but you seem to bat every single idea away. Please don’t take this in the wrong way as I do t mean it harshly but are you sure that you’re not part of the problem? There’s lots and lots of options available to you and your son as suggested on previous posts. Maybe you just need to change the way you get him engaged in things?