To be devastated - totally failed DS!

[WrongMoveAgain]

Too long and complex to explain but I was fighting for a last chance saloon type of education intervention for him. Took a risk I’d win.

I lost.

Now left with no education provision. Nothing for him to do in September. No where else to send him. More importantly he won’t get the social, emotional and mental health input he desperately needs alongside education so he can actually engage.

Now 21, ASD and mild learning disability (too mild for high levels of support, too severe apparently for lower level support), social and emotional and mental health issues, can’t live independently and unlikely ever to now without the support I was fighting for.

Can’t work or train without long term support which isn’t available. He’d just walk out due to his social anxiety and lack of engagement. He doesn’t give a shit about gardening, animal care or working in a cafe which is most of what’s on offer anyway!

Looks like his future is sitting in his pants playing his PS5 in a darkened room living off disability benefits as his social worker said most young men like him do.

This was my worst case scenario when he was a young teen and I can’t believe that after all the fighting I’ve done to prevent it that we are here!

He is such a lovely lad, funny, kind, loving, so handsome (he could be a model honestly), and very talented in one thing in particular that I was fighting for him to be able to study to make something of it. It’s so upsetting that his future might be rotting away in his room when he has so much to offer and can do actually do.

He wants to get out there, get some skills to work and live independently, get a girlfriend, have friends, live his life and I know he’s capable but he needs a big intervention for a few years to do that which he’s now lost the chance of.

Absolutely crushed!!

My cousin was the same. His parents ended up paying 2 different carers to accompany him to different activities. It sucks. He did get qualifications via inter High online and using tutors

Hi

This might be of some help, but might also be pointless. Just wanted to give you a handhold.

Without intentionally comparing myself, to your DS.

I'm 25, I have severe ADHD and mild autism. No intellectual disability. I currently receive pip, and I work full time as a support worker (explaining how that works to DWP was fun :) )

I take high dose, slow release stimulant medication to help me function correctly in the form of Elvanse. I was one of the first in the UK to be prescribed it many years ago, and it changed my life.

I struggle with many things, and if it weren't for my partner I don't know where I would be right now. At 21, I attended my first year of university and left at 24 after completing 2/3rds of it, as I kept failing to engage with the faculty.

I was told growing up I'd amount to nothing. That I'd be a drain on society and I might aswell be locked up, or in care. My parents fought for many years to get me into an SEN school, which had its positives and negatives.

I struggle so much with daily life that I started to believe what everyone was saying. I thought I'd be alone forever, that I'd never work and that I'd never succeed.
I've never really had any friends aside from one or two here and there because people can tell right away there is something not quite right with me. I have sensory issues and a debilitating spending problem.

As you can see I'm a little bit of a hot mess.

But society is changing. Slowly and surely. I'm no longer seen as hopeless. After working for several employers who all sacked me for the way I am, I found one who actually supports me in my role and provides those important, reasonable adjustments.

I'm not where I want/wanted to be in life.
My few friends I have are buying houses and earning 45k a year. I'm earning 24, and renting.

But I'm still leaps and bounds above what was expected of me.

Your son may not mature into someone who can live independently, or work a full time job, or, he might just need a little more time. there is no way of knowing. I remember my mum crying when I got accepted into university. She cried when I passed the probationary peroid of my job. She has done so much for me, and I know she worries about me all the time.

But at 21, I was very much like your son. When I wasn't attempting to study, I was playing games for 12 hours a day. Ordering huge amounts of takeaway food and obsessing over the news and Internet memes.

At about 24 something in me suddenly clicked and everything fell into place.

Again I don't want to compare myself to your son. I don't want it to come across that way at all.
But please don't give up on him. The system stinks, the system won't help him. But a mother who will walk through hell and back to see her son smile, will make the world of difference.

You're doing an amazing job. Keep up the good work.

You have not failed - However I feel the same every day. My son is 19. He has been discharged from disability services because he is 'too bright' - he is borderline LD with extremely low processing. However other services will not take him because he is 'too complex' Therefore with regard to his mental health we move from crisis to crisis. He just wants to work with horses - he can groom but even with someone going along in support (he has high anxiety) stables don't want him or charge us for him to volunteer (the last quote was £112). He just wants a job for a few hours and asks every day. Like you I feel to have failed him.

Anoydad2023 that is a amazing journey. Very inspirational.

Op I hope you're doing OK, and that you feel hopeful after reading Anoydads post.

Is DS intelligent? If so, online learning courses may suit him well with you prompting him to stick to them. Then he could get a job in coding or games design or whatever else appeals to him, working remotely or with neurodiverse peers in an environment where it’s celebrated to be weird. Has therapy helped his anxiety at all?

It could be a silver lining to have the pressure taken off him for a while. Being forced into work and social situations can be really damaging for someone who isn’t ready; it could keep their confidence knocked down to rock bottom because they repeatedly fail and get social interactions wrong.

Also, does he have online/gaming friends? That should be fine for social interaction, maybe encourage him to eventually meet them irl or support him in going to gaming conventions or local nerd meet-ups like D&D or Pokémon club, that type of thing.

Re universities: IME of one supposed to be incredibly good with additional support, and another just standard one, they can be good at supporting ND for those with little to no self awareness as long as they do as told.
If not, or if at a more self aware level, it all tended to start well but fall apart quickly, other than enabling extensions to assessments etc.

However I'm also aware of a small number of students with Down's Syndrome who graduated in a creative field. They were part of a different learning center that re framed part of the course requirements, but where overseen and accredited by the university. Many things can be possible, but there's a lot of luck and hard work behind them a lot of the time.

Ds has learning difficulties, rather than learning disabilities, though the difficulties were at a disabling level, if that makes sense. Under a lot of derision I took him to and from uni for three years to make the apparently impossible possible, and was on site. Initially meeting at lunch and breaks and providing executive function back up during the 1st year and later at key points, until I successfully relegated myself to just a hot line and emergency pick up, for him to self control meltdowns. But my own life and future paid the price.
There's another DC with acquired brain damage and serious learning disabilities whose unable to do much beyond enjoy life at their own level, so also experience that not every situation can be changed through the right support or education no matter how much we try. Parents have to cut their cloth to the situation and there is nearly always a price to be paid.

Why not get him modelling! Lots of opportunities for different types of modelling and extra work and it will give him an income and some confidence!

We are only geared up to manage extremes aren't we?

So many young people like your son.

But let me share what my neurodiverse kids have done/decided.

My 20 yo son has ASD, he is very smart but was bullied in senior school. He decided to learn about construction. He passed his joinery qual and works with a company converting terraced houses into homes of multiple occupancy, because he decided that is what he wants to do. He's saving to buy his first property at the mo.

My DD is yet to be diagnosed but has hypermobility and we think both ADHD and ASD. She is finishing off a BTec then plans to train in cyber security.

I think they have a way of working things out for themselves - we maybe worry too much.

Ask him to do a few of those tests - that map preferred behaviours to jobs to see what he might like to do, then help him do that.

It's not been plain sailing, honestly, but I think in a couple of years I'll be able to retire knowing they are fully self sufficient.

Hi @WrongMoveAgain ! My ASD son is also about to turn 21 and has just left college after 4 years and he is now lost as he doesn’t have really much to do. I have fought for everything for him including him doing a mainstream class at college but with lots of support. Can I ask in regards to education does your local college have a program called life skills or something along the same name? My son was on this course for 3 years, it’s a course for disabled people mainly those with a learning disability and ASD. It helps them with basic tasks including how to run a home eg cooking cleaning shopping. It’s doing things that we take for granted. This course helped my son meet new people and helped him with his independence skills.
in your area could your social worker put you in touch with a support network I.e get your son a support worker who he could go out with to do activities with. My son goes out 3 days a week twice to the gym and once for a social visit into the town. They are currently trying to organise for him to get a volunteering place at a cafe down from us ( he also did a hospitality course so he would like to keep his skills up).
You have NOT let your son down you are fighting for him and you are doing a brilliant job! You’re both just feeling a bit lost at the moment. If you need anything get in touch and I can try and help as best I can. Keep up the great work your son loves you ❤️

Please look at Inclusive Apprenticeships.
Plus Civil Service and Local authority Apprenticeships.
Also Traineeships for work experience
Prince's Trust are great for support
They will be able to support him.

OP- please respond to whereabouts you are in the country, whst your sons diagnosis/ needs are and where his interests lie. There could be some valuable advive/ recommendations for you x

OP I'm so sorry. I have akid who has been struggling with MH since lockdown; have been hunting high and low for support - services are so sparse, fragmented and scattered.

As pp said, it's not you who has let DS down, it's the system. Of course it's left to you to make the best of a bad situation. You sound like you'll come up with something.

Wishing you strength and perseverance and luck, for a change.

Don't know if people have mentioned supported internships or supported employment - roles don't have to be as limited as you thought.

Where in the UK are you? Look up Project Search or DFN Foundation for Supported Internships.

Without being negative, those who have mentioned Prince's Trust - in my experience, they are not good for those with additional needs. They say they offer support, but not enough/the right support.

Agreed, my son with additional needs did it. Total nightmare, the way he was treated was appalling, no knowledge at all about his needs or condition. He was traumatised by the whole thing.

Is there a supported internship offer near you? These are typically run either by colleges or by the local authority and are basically a year of work placement with a job coach to support employability skills. He may need an EHCP to qualify though.

Why do you keep name changing OP?

if you’re the poster I think you are this facility costs £250k a year?

What does your son want to do? At 23 this has to be about his views wants and needs and his perspective must be included.

Would he be interested in a supported internship? There are more of these springing up for autistic people in technology or arts.

My son (22) is one of those people gaming in their dark rooms in their pants. I view it a bit differently from you. He was utterly traumatised and burnt out by his education. Like you I wanted him to have structure in life, he tried an internship (ruined by COVID) then an online course but ended up "gaming in pants".

It's been 18 months and you know what? He needed it. He needed that time to reset, time with zero responsibilities to just begin to claw back some sense of what he wants. He has begun making decisions himself - going out for food, cooking for himself. He is on pip, and has LCWRA. I am presenting him with options for his future - look at volunteering, look at courses that might interest him, long term think about what work he might do. He is beginning to work with a carer/PA who will be taking him off out and about to do what DS wants - swimming, or climbing, or to the shops, or whatever. He needed an opportunity to stop the ride and regroup and he's so much better mental health wise for it. He's doing things now that a year ago we wouldn't have thought he could.

The system is rubbish and you havent failed him, the system has.

I dont think people realise how little support there is out there. My son is going into year 9 and this year is his transition review for post 16. There isnt anything obviously suitable and education is meant to be compulsory to 18. So i have no doubt after 18 there is even less / nothing.

For us the most sensible seems to be the supported apprenticeships which as you say are in coffee shops or gardening which luckily are things he would like. My friends son actually got a supprted apprentiship by visiting all the companies that did what her child was interested in and one said ok theyd be up for it if the LA handhred them through the process. This was s physical disability though.

I think you need to take a deep breath. Regroup and you will find some fight.

Appeal! The decision goes against the sen cop, can you contact the disabled children’s council to help you?

This, and Yanbu. However, you don't sound like the type to give up.
Maybe you can't get him what you think he needs, doesn't mean there is something out there suitable. A friend's DGS im similar circs ended up working in a pizza shop which suited him to a T, we never thought he'd cope, but he shone.
The answer is out there, your mission now is to recover from this loss and find it.
YOU did not fail him.

This young person is 23 and has a right to have his voice heard and opinion reflected too. Respectfully, it's not the same as fighting for a younger child's rights.

Young people with capacity have the right to make unwise decisions.

Apologies -he's 21 not 23 - but still needs his voice reflected in any battle parent is undertaking on his behalf.

Why do you think his voice wasnt taken into account? I feel i missed something.