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!!

Why did the judge say your choice wasn’t suitable?

it’s the local authority that needs to sort it

you haven’t failed

What about Project Search
https://www.dfnprojectsearch.org/

We've had a lot of these young people through my workplace and they do really well.

I appreciate it's really tough but even if you'd secured your aim, at some point you'd be facing the what now question.

Whatever you do now I'd really think about potential work environments. I have a family member with autism who loved woodwork and had places to study etc and did well there. The trouble is joinery workshops were far from the right fit. He now does document scanning and is doing well. It's part time and flexible for an organisation with a good understanding of his needs.

If you can try and keep him on real world hours and routine while you work out the next steps it will help. Our biggest issues were when he effectively became nocturnal to game..

It's taken many years more than it takes others but honestly, in his 30s he is now unrecognisable in terms of the things he has managed.

It's not just one L/A that fails though, it's the whole system. It's trying to force a square peg into a round hole; the only thing that happens is that the square peg breaks.

Why not take him to a modeling agency?

So your appeal hasn’t concluded yet? There’s still a chance you can still get a placement ordered. All these indications from the Tribunal and adjournments certainly sound very unusual. Was your preferred placement very expensive?

I’d pay a direct access barrister with a specialism in education law for some advice at this point. And really listen to what they tell you.

My heart hurts for you.

Mines only 4 and a school place has been a battle and I see where day that it never gets easier and we beat ourselves up so much.

You haven't failed him. You have fought with everything you have for him. The system has failed him and you.

It's heart wrenching, it hurts and it's unfair. I honestly don't have any advice but please be proud of yourself. You are so so strong, to go to tribunal and know exactly what your son needs and refuse to let the LA win. Your son absolutely knows how much you love & will fight for him.

I hope something suitable comes up soon 🙏

I found the provision non existent for help past 19 even though we had an EHCP. My DD20 is beautiful & lovely but not capable of working due to mental & physical issues. She did try bless her but it was too much. We have absolutely zero help not even a social worker!

The tribunal doesn't really like naming type of placement in EHC Plans because it leaves young people in limbo. So if there's any chance at all of identifying an alternative, you need to go for it.

Have a look into Project Search or The Princes Trust. I’ve worked with lots of young people who have took part in these programmes and they’ve done so well. A lot of them are offered permanent jobs afterwards.

A little story of hope but - an old lodger of mine has autism and had been sat at home doing nothing until he was about 25 when a local charity supported him to get a basic job with the big local employer, which he still has to this day.

He left home a few years after that and moved in with me (the making of him according to those who knew him before), got a girlfriend (neurotypical), eventually moved in with her and now they've bought a house together.

I would really have appreciated it if his mum and dad had taught him how to do his own laundry before the age of 30 though. Teaching him that went a bit beyond my remit!

I’m in territory I know nothing about I’m afraid so forgive me if this is a daft suggestion. Is there private provision available? If so, could you approach charities or do a Go Fund Me type thing to raise the finances? It sounds very tough and incredibly disappointing, so sorry.

Hmm.
Job in tech security. From home or in a small dark room with other people who really like gaming but will work to get some money.

OP, could you have a chat with a SEN Advocate? They’d be able to advise you on whether you have a case for appeal and look at the best way to approach this.

You haven’t failed him. I suspect you’ve put so much into this part of an exhausting long-term fight; it feels like the last chance. But it isn’t. This isn’t over, even though it might feel that way. Of course you feel crushed, gutted and many other things. This stuff knocks the wind out of you, again and again.
You have to lick your wounds, figure out another strategy, gird your loins and go sharpen your sword.
Of course, you shouldn’t have to be where you are. It’s all so wrong, but like so many others in similar situation. I don’t know how to change the system, so eternally finding another way to meet individual needs, and becoming battle-hardened is what’s left.

I don’t know if what I did is of use to you, but what might you/he be able to do if you had the budget?

Our case when you got past the games they were playing, was LEA was insisting on unsuitable provision because it was the cheap option, and they laughed all suitable provision options out of town. They were basically saying if he couldn’t get anywhere without specialist help, then he was unlikely to get anywhere anyway, so wasn't worth investing in.
I knew they’d be successful in court fighting any suitable provision under ‘incompatible with the efficient use of resources’ because they’re hard line that we're poor (mismanaged and we pay for it!) and all SEN situations are accommodated by the slim provision they already have, even if it damages and prevents education. The best they could come up with was Ds could try surviving the local PRU. It was after all ‘special educational’ provision, so suitable for 'special education' needs.

So, I went after control of his education budget to cobble together provision.
(turned out to have been the very best thing I could have done, but I didn’t know it then.) My Ds was younger than yours when we hit that point, but the basic idea is the same.
The LEA can’t/wont do what is needed, then I will. Therefore I want and need the money they’re getting from the government and keeping, by not providing suitable provision, in order to do it.

TBH it was a very grueling process requiring a lot of researching how their finances worked, and getting my head around all the relevant acts and cross referencing them (same skills really as in creating a watertight EHCP) and then the evidence preparation, and a huge nasty fight in in court, as LEA decided to defend their right to keep his provision budget.
Part of it was because I couldn’t afford legal representation, so had to do all the donkey work, but really it was just another level of what I’d and I suspect you, had already been through.

I can see you’re wary of identifying him through his specific interest, but an idea of the area it falls in might garner information on opportunities you could then seek to implement.

This isn't your failure, its SEN services and more importantly our government not giving a shit about people in your situation abd vulnerable kids. They are evil shits.

I'm going through the start of this with my four year old. EHCP is at wk 24 and no decision on getting one yet. This should have been done 12 weeks ago. My son doesn't even talk yet and is going to mainstream and they are acting like they don't want him there already, which is promising! This is a four year old going through this stress, not just us. They forget that. I'm not sure what to suggest as I'm only getting familiar with this broken system myself and am at the beginning of this struggle, but hope you manage to get through this. 💐

You say he has a mild LD - this is going to sound really blunt, so I apologise for that, but has he had an IQ test done and if so - did it put him into the range for a "mild" LD (so you're looking at 69 or lower).

If so, in our service at least, he would be supported by Learning Disability services (or Intellectual Disability services depending on where you live and which terminology they're using). Can also potentially be supported by our service at least if he's got a slightly higher IQ, but you can make the case that the impairments he has in his daily functioning as the result of things like his social communication difficulties mean that it's the service he best fits with. I've had clients on my case load (I work in LD services as a healthcare professional) that have come just above the IQ cut off but are better supported as one of our guys than in mainstream services. And very very few of them spend their days playing playstation in their underpants - so your social worker is talking utter utter shite.

Take the time, dust off your wounds and give yourself a little bit of headspace to heal - you can't do anything while it's still raw and hurting. Get yourself referred onto as many waiting lists for services as possible - throw in any potential risk factors in terms of deteriorating mental health, vulnerability to exploitation, vulnerability on social media etc... you know how to be a pain in the arse to get things going in the system as well - once your headspace is better - get that wheel squeaking again.

What 'thing' is your DS interested in? Maybe we can help find a supportive provider of training/apprenticeship type thing.

I'm sorry you have to fight so hard for the bare minimum, it's not fair.

This. Steve Broach, if you can get him.

It’s unlikely it was unlawful. He is basically saying these two provisions offer the same - if I rule one as unsuitable by default the other is too so you’re going to force my hand if you do this.

Agree with those who say consider your legal options with an appeal to the upper tribunal but meanwhile are there supported internships on offer in your LA?

You’re not funny.

Thanks, Jenwillsiam - that hadn’t been how I’d understood his position but you’re right that if that’s the case it wouldn’t come close to Wednesbury unreasonableness.

You say theres one thing he’s good at
Sit down and think of everyone and everything that’s involved with that.
Email them, phone them,knock on doors if you have to.
you’ve fought this long with the establishment now you have to learn a different way to help your son.

It sounds so difficult. If it’s more social anxiety can you access some long distance learning and then tackle the social bit separately?
We have a drop in cafe with gaming options that one of our young men has enjoyed, which gets him into society a bit.

Good luck with the fighting further options other pps have suggested.

You haven’t failed him, the system has failed him.

I work with teens with SEND and it’s so frustrating how so many are failed once they get to a certain age.
Its no wonder over 50% of prison populations are people who are ND.

He’s very fortunate that he has you fighting his corner and supporting him.

I do not know much about provisions past college level so I don’t have much advice.

If he can never live independently then it sounds like he has a very high need level and so I’m not sure what he’s capable of.

You say he has an interest which is fantastic!
I would look into seeing if he can get a PT job or do a course on it.
Remember he probably has a lower emotional age than someone NT so although he’s 21 I wouldn’t worry that he’s too old.

My friends brother sounds similar and he was fortunate to have an uncle who had his own business and he was able to work with him, initially part time and then went FT.
I think he did an apprenticeship through him and was able to learn lots of skills and become much more independent and then went on to get another job and move in with his gf (also ND).

I’ve heard that’s universities are fantastic with people who are ND but if your son can never live independently then his level may be too high for them.
It may be worth looking at a local uni that does his course though and just enquiring about it because it may be possible for him to sit in on some lectures and get part credit, just to give him something to do that may help him in the future, instead of just sitting at home.

You can do online courses but it would be nice for him to get out and about and learn how to live as a young adult.

It’s a shame there is no supportive living places for people like your son.
Unfortunately there are so many people who’s needs fall in between and so aren’t eligible for full support.