To be terrified of what may happen to my son?

[TerrifiedForMySon]

Teenage DS2 has severe learning difficulties and is on the autistic spectrum. He is very able to compared to others with a similar diagnosis but is still at a great disadvantage to his peers.

He has never engaged with education so has no qualifications of any kind and looks likely to be kicked off a college course we put great efforts into getting him on as he won't engage or follow instructions. We have been told there are no other options for him and there isn't. He has no hope of working not only due to his difficulties but because he refuses to engage if what he's doing is not 'fun'. Social services have recently told us he doesn't meet their criteria for services so won't be eligible for sheltered housing.

All we can do now is perhaps apply for benefits for him when he reaches 18 and hope we are around for a long time to look out for him.

Since SS have said he's not eligible for help from them it's dawned on me that we are on our own with him. He's very vulnerable and easily led, still a young child in a 6ft 3 inch body in many ways, he could never be independent. He behaves inappropriately and has meltdowns too.

I have nightmares about us not being around and him living on the streets or endangering himself. Sometimes it's agony thinking about how he could end up , but also agony imagining that he will never leave home and having to put up with him for ever .

He has siblings and I'd expect them to look out for him but what if they can't due to their own lives? He can be very rude and aggressive to them too.

I've also read horror stories of people like him being institutionalised so I'm kind of glad that SS won't be having dealings with him but what kind of life is he going to have to anyway?

AIBU to be so scared for him?

Yanbu at all.

DS1 falls outside a lot of the extra help criteria, as he's bright. Thankfully, he has an ace school and a switched on la Ed psych to advocate for him, as I'm only a mum and my opi ions count for nowt.

Really sorry you’re having to deal with this.
I’m afraid I don’t have any experience of what you’re going through but surely if he is incapable of living independently there must be some form of support for him?
Is it because of his age? I mean if he’s under 18 do SS feel that he’s essentially still a child and therefore is totally ok living with his parents

Is he under community LD team?

Oh OP I recognise those feelings. But there is help out there and there's a chance for a great future for your ds. I'll be back tomorrow. Or today. Thank God for the extra hour. Your son sounds amazing, he's achieved so much - college isn't the only way to help him progress.

Sorry, meant to add that it’s really not fair to expect his siblings to be responsible for him, certainly not long term.
I hope someone who knows what they’re talking about reads this and offers some useful advice.
Good luck op

DS really did not have much luck with primary or secondary school PickAChew. Part of the reason for his complete refusal to engage with anything now. Secondary school Head didn't agree with the diagnosis carried out by an assessment by an NHS clinical psychologist, SALT and paediatrician

Ain'tnothing Sorry I didn't mean mean I'm looking for sheltered accommodation for him now but expected he'd be eligible in the future, maybe in his 20s, but it looks like he won't be.

He's not classed as having a LD Obviously. He's borderline as IQ came out as 70 so severe learning difficulties rather than disability.

Do you think he might be interested in cooking? Perhaps he could work in a restaurant.

No, I'm not expecting my other DC to be responsible for him. I said look out for him, there's a big difference! I know we need him to be in a stable supportive place before we pop our clogs but how we're going to that I don't know!

You don't always need qualifications to get a job.

Is there a way to turn his interests or his fun things into something that he can make a living at?

It's shit op were living in one of the richest and most forward thinking (compared to lots of other) countries and yet there are massive holes that hundreds of people fall through because they don't quite fit into what the rules for care are and because of that they are left to languish. Only getting support (if at all) when things deteriorate to a point where the person life is unliveable!

What does he find fun? Is he artistic or creative at all? Anything he excels at? You're not being unreasonable at all. I guess its's something everyone with dependent adult children worries about. Do you have life insurance so that he would be supported financially if anything happened to you?

I wish Aqua. He'd eat peanut butter sandwiches and and apples all day if he could. I had his Food Tech teacher on the phone to me in frustration when he ate raw chicken 'for a laugh'.

His 'fun' is gaming, Marvel, climbing trees and attacking bushes/trees with sticks from said trees. His college course was working towards supported work experience which could have been in a game shop which would be OK if it involved trying out new games but if he was told to tidy shelves, well forget it.

terrified - Charities information & research networking those are your weapons - the internet is your friend for research & I suggest the local library - they often have local concerns advertising there - job centre plus may (hopefully) know of some employment support or experience - are there any other colleges nearby? The NAS has lists of what is on locally in terms of support etc & sometimes local social activities -by all means ring them - all of us who have adult children understand what you mean the NAS did research on parental worries guess what came top

Have you considered getting him assessed privately.

His diagnosis may have changed/gotten worse and he might be entitled to dla until he is 16. I'd be worried too. He may end up with carers who come out

What about him volunteering in a charity shop on weekends to see if him working is totally out of the question

I've often thought about people in your position OP, you have such a lot to worry about.

I've also thought about how families in your position could possibly start a sort of caring circle...where as parents age and become less able to look out for their children, other, younger families who in later years will be in the same position, take up a sort of watchful position...where they check regularly on the adult child who might need more support than the social services are giving them.

It passes down....probably it would take an enormous amount of organisation but it's a thought.

First of all, you have my empathy, your situation sounds really heartbreaking and stressful. But. He's autistic, not a king. Sounds like it is really super important for him to learn that even children have to learn how to do unfun things.

If it were me, I would get on some spectrum forums and keep asking and keeping searching until you figure out how to teach him that specific thing. I am guessing here, but maybe one technique might be to start MUCH smaller then you would have ever suspected. If he does an unfun thing for 5 seconds, he gets a star and after five stars or whatever he gets a very small treat. I'm guessing that the way to teach someone like this is with very small increments? (I'd verify what I just said with other parents who know much more). This isn't going to work tho if you've already been giving him everything he wants whenever he wants it...

Anyway, I just googled "how to teach autistic boy to clean up" and got lots of interesting and potential info. you could do the same with "how to teach autistic boy to do laundry" sort mail, sweep the floor, etc etc, anything you want him to learn.

But also, please remember to be kind to yourself, this is stressful and anybody would be stressed out, so go easy on yourself. Set realistic goals, that are genuinely realistic so you don't beat yourself up if things don't happen on the timetable you are hoping for.

I will look into that Mum but the LEA said there's nothing. There is an SEN college for more disabled students but he reacted very badly when we tried an SN school as he couldn't cope with being lumped in with the more disabled kids. He doesn't consider himself to have SN at all!

The problem with his current college (supported placement), along with him not engaging cos it's 'boring', is that they are worried he will endanger himself as he wanders off at breaktimes and when they're off site. He is capable of cycling there alone, although he won't go in on time as time is of no consequence to him, but they need him to stay with the group which I understand. There was an incident where they were all waiting for the lights to change to cross the road but he stepped out into the road (as there were no cars coming and road was clear which was verified by his tutor) but they said because he wasn't following instructions he could have been in danger so I was asked to keep him off college until they had an emergency meeting to see if they could get him a 1:1 which is unlikely to happen so I've heard. Apparently some of the staff have been in tears due to him wandering off which he doesn't understand at all, and neither do I tbh.

We looked into a reassessment Mumto2 but his paediatrician who initially diagnosed insists there's no evidence to warrant it and we have to go through her to get a referral to a different paediatrician apparently . Can't afford private as I haven't been able to work since he was 14 due to constant issues at school, exclusions and school refusal and my LEA won't accept private diagnosis from what I've seen.

I am guessing he would fall into the group of young people with ASD who have a ‘demand avoidant’ profile. I think there are a lot of kids with these kinds of difficulties and I do hope more is available for them in the future, and more advice on strategies for parents. I would try to keep him in the loop with social care (for example, services that are for young people who are NEET not in education employment or training, and then ask for a transition to adult social care when he gets to 18. I don’t know your circumstances, and I know that sometimes violence and aggression can make things hard too. However I would try not to shield him from natural consequences - make him live within his means, for example, save up for new games (this is based on my limited knowledge of one young person whose Mum was living on a shoestring while he had everything, so forgive me if I am off the mark, but do look after yourself). I would apply for PIP now, and appeal - he is disabled by his difficulties and this has a cost for you.

Mencap often has learning and employment schemes for those with learning disabilities.

www.mencap.org.uk

Get in touch with your local branch for further information. Do you have a local parent carer forum that you could contact for further help & information.

You're not alone in this fear. I would really recommend posting on the special needs board as well. And getting in touch with the national autism society.
We as a family broke down all our concerns into different areas and are addressing the ones we can. So for example we made sure our wills reflected our family situation and that any money inherited had trustees. We will look at a power of attorney once our child is over 18.
I've also become quite active in 2 local charities that work with children with disabilities and one of the things we're setting up is a program for transition from teens to adulthood.

Yes it's a terrible worry I know. My DSS is in his 30's, sounds like about the same situation. Lives with his mother , never comes out of his room, plays computer games all day and night. She makes his meals and he collects them when he is hungry. His younger brother is expecting to care for him if he is left with no parents to care for him. It seems unfair but it's about the only choice.

The trouble with things like learning employment schemes, is that the person has to be prepared to go along - which not many are. DSS went along once and refused to ever go back . So what can you do.

If you look up your local mp ask them to write a support letter for your appeal.

I know of some who have had a private diagnosis for adhd but not anything as complicated as your sons and the paediatrician doesn't sound very helpful.

Go to your gp on your own and ask to get referred to a different trust with different paediatrician.

Has your son got a referral for chams as they might be able to help somehow too.

Such a danger him wondering off. Would he benefit from an assistant dog? There is a long wait for them but they do help some children and they are already trained.

Awful really that there is such a gap in care for vulnerable people.

Does he have an EHCP? (are you in England?) If so he should be supported in education until he is 25. If he doesn't have one you need to apply for one and then consider autism specialist schools and colleges and seriously consider residential placements. With a 24hr curriculum your son could benefit immensely and being in a specialist school will make him eligible for other services as well.

Appeal ss decision I know someone with learning difficulties living on a supported farm lovely environment in reading. Appeal with lawyers fight for ur son it’s what the other mum had to do

Have you looked at Siobhan Timmins’s books?

www.amazon.co.uk/gp/product/B06XCLF1L7/ref=oh_aui_detailpage_o07_s00?psc=1&tag=mumsnetforum-21&ie=UTF8

There is also one for young autistic adults, and she discusses how to approach bereavement. Really helpful, especially as Dr Timmins ( who gave up her career to look after her son) wrote the books as her son grew up, throughout his stages of growing.

Do you stay in Scotland? If so you could apply for a grant through the ILF transitions fund for some support. Think you can get up to £7000. You could look at getting a worker/befriender to support him for a short period each week to work on independent living skills.
It might be helpful also getting in touch with one of the autism charities as they often have advice lines and support for parents.