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!!

That sounds absolutely gutting, I'm so sorry.

I’m so sorry. This is terrible, such is the state of things. Especially when you’ve put your all in. I have no advice, but I know what it’s like to come up against those brick walls. I have two autistic daughters, both of whom have had severe mental health problems - one of whom is still suffering and who cannot go to school at the moment. Gaming is her refuge, and art is her talent. I’m just trying to keep her with us at the moment. There is a company called MindJam which offers mentoring through gaming - not sure whether they might be with trying out?

You tried. You haven’t let ds down, the system has. He might not have something set up for September, but it doesn’t mean you won’t find something eventually.

Are you able to share the subject he's interested I ? People may have ideas on how to get him access to study in relation to it.

I just feel numb as trying to hold it in not to upset DS. I don’t know whether to cry or laugh that the Judge bought the ridiculousness of the arguments the opposing side were making.

I kind of knew it was set up for us not to win but I still had a tiny bit of faith sense would prevail. Feel like such an idiot!

2 years of fighting, completely wasted time just to leave him in a worse position than he was before! So much stress for bloody nothing.

I get it. My son is 23 and in the situation you describe. He has an EHCP, but it's useless because he's too mentally unwell to engage in education. We've waited years for NHS help for his anxiety and OCD.

Like you, I tried so hard to prevent this scenario.

You say your son has lost his chance of support in September. If this is EHCP-related, can you appeal? Or have you lost the appeal? In which case, don't despair. There will be other ways to help him.

Can you give more details? Maybe the MN hivemind can suggest options.

You are not an idiot, OP. You fought for your son, like a mother should. As a poster above said, it's the system that has failed him, not you.

You havent failed him, not one little bit. You fought and fought. Its the utterly shit system with lack of financial input to provide the support that has failed him.

I have a 33 year old disabled son who looked for a long time like he would be the "in his pants, gaming" guy. He is currently, thanks to help from his friends, in negotiations for a BIG license for and RPG game he has designed. I am talking bit money lawyers and trips to the US type negotiations. Its happening, its just how much they will pay him that is in question and it is eyewatering! I would have helped but had no idea what it was all about.

It has taken a while but the "on paper" kid who would achieve nothing is almost certainly going to be worth more than our whole family put together financially!

Take away his game boy or get him a job with a game inventor or seller.
List him down for modelling.
He could model just his hair, feet or hands etc.
Could you both clean rooms for painting and then pain the rooms for builders etc? Does he like to design and paint large wall murals?

@PyongyangKipperbang - congratulations to your son! There is always hope.

Don't give up hope, OP. I'm saying that as someone who has spent the last five years watching my son deteriorate and become a shadow of his former self. I put all my energy into seeking help for him and I genuinely believe we will get there in the end.

Sympathies OP, my DN has just been through similar, it’s so disheartening for Dsis. Good news is that she’s just started a job in a local chain and even though it’s only a couple of evenings a week it’s really helped her with routine. Also she’s started going to the gym with Dsis.

First of all, what that social worker said sounds incredibly unkind and unhelpful. Second of all, you have not failed DS, you fought and fought and the system let you both down.

I don't know the exact issues your DS has but my DB has his own issues that meant he could never hold down a full time job due, in part, to anxiety issues as well (to say the least). I can't lie, he did spend a good amount of his twenties playing video games, but my parents also encouraged him to do distance learning courses so he had something else to do. Slowly he started to make friends, have a social life, have girlfriends. He has been with his current gf (now fiancee) for nearly a decade and they live in their own flat together. She works and my parents give him a financial allowance.

By no means is this a situation anyone dreams of for their child, especially the finances. But he is alive and happy and I am incredibly proud of him for living something that approaches a normal life with a partner who he loves and who loves him back.

What I'm trying to say is that where your DS is at 21 is not where he will be forever. It's hard, but do have hope that he can and will find happiness and fulfilment, even if it takes him a little longer.

Lost the appeal.

Expert evidence in favour of the (residential) provision we wanted was totally ignored and ruled against. LA had no expert evidence to counter at all.

LA tried to name 2 different provisions through this Appeal which were ruled as unsuitable and finally grasping at straws wanted to name temporary outreach provision which DS started last year after I had to fight for it after no provision at all a year (while Appeal ongoing).

Judge had said it wouldn’t be named back in January but then put me on the spot by giving me two options - continue with requesting our named provision but if he ruled that as unsuitable, the temp provision would be as well OR concede and agree to naming the temp provision.

I stuck to my guns and said I wanted our provision named as the temp provision is giving DS something to do but issues were starting, his flaky LSA was frequently not available so his days are cancelled at short notice which upsets him (he’s not angry or aggressive or anything just see him taking to his bed, really down, he needs routine!) and it cannot meet his long term needs or offer progress. Judge had already said was unsuitable as well!

Also if we tried to find another provision like the one we requested (there isn’t one) or requested it again for 2024 it would take a year for another Tribunal and potentially another year for a decision if it’s dragged out again like this one. DS would be coming up to 24 and they do 3-4 year placements so time will have run out. EHCP to 25 but LA could try to cease before that.

Judge ruled neither ours nor LAs provision was suitable.

On the very same day in the afternoon, temp provision cut completely with no notice as apparently they have no LSA to work with DS and as he’s not staying with them in September, it’s not worth them getting another one. It was supposed to continue until end of August (due to when he started and days he’s lost as LSA not available) then he was supposed to transition to new provision with support from them from September.

Worst thing is, temp provision had told DS about lots of activities they had planned over the summer which he was looking forward to. Now he can’t go as no LSA and they won’t let him attend without one.

I’ve spent over a year trying to identify another provision when LA refused to name our preferred one. All say they cannot meet needs as either his ability is too high, or his ability too low, and/or can’t support mental health needs. There is nowhere else! Post 19 SEN provision is quite sparse!

LA tried to get an order to force me to take DS to another provision 1.5 hours away last week for an assessment despite provision not being able to meet needs. Judge refused request. Got another ‘can’t meet needs’ response from the only other college which may have been the least worst option today.

Assume Judge will now say the LA has to find a ‘type of provision’ rather than naming an actual one. I don’t hold out much hope of them doing that and it will be dragged and dragged.

I should have just conceded to the temporary provision being named as permanent placement. As least DS would have something to do and social contact so his mental health doesn’t go to what it was last year when he was totally isolated at home for a year.

Now it’s unlikely he’ll have any provision at all.

OP, that ultimatum from the judge sounds so unreasonable that I’m wondering if it can be appealed. I’m not a lawyer who works in the field of judicial review but in your shoes that’s what I’d be beginning to look for, if only to have a quick call and see if they think there’s something worth pursuing.

I agree with the above poster. That ultimatum and subsequent decision by the judge sounds very unfair.

You could contact SOS SEN for advice -

sossen.org.uk/

Also, IPSEA, who I'm sure you'll know.

I'm so sorry for you and your son for being so let down.

What's his talent OP? Perhaps we could float some ideas?

This exactly. You fought the system and it let you down. You didn’t do anything wrong.

You have not failed him, the system has.

As others have said what is his talent? Where are you in thecountry? The hive mind of mumsnet can be fantastic at finding soloutions and just floating ideas.

So sorry you have fought so hard and then been let down. I'm sure your son knows how hard you have been fighting. I don't know the system you are up against but it sounds neither fair nor sensible

The system is failing your son - not you op. Its a flawed model because the provisions required to meet peoples needs just aren't available, parents and carers look for "best fit" then the LA or judge decide its not suitable. It's sounds like you've fought hard for your lovely son.

Would speaking to your MP give you any leverage? Sorry if this has been tried already.

Wishing you and your son the best x

You haven’t failed him! Like many parents of SEN children you are fighting tooth and nail for your loved one. I know many parents who have been through this and recommend paying for specialist legal representation to ensure your sons SEN are met through fulfilment of his EHCP. LAs will often push multiple inappropriate provisions to save £££££££ but these placements usually implode badly and fail. Sadly many of our young people are failed by the system and experience damaging journeys on their route to eventually settling in the right provision. A 2-3 year placement in a specialist educational provision will still be valuable. Please do get specialist legal representation. Ask online groups and advocacy groups for recommendations.

SEN funding has spiralled and hit rock bottom under Tory government these last 13 years. The conservatives are severely failing young people with disabilities.

This is so lovely to read. Congratulations to your DS and to you all.

I'm in the same situation.My son is lovely, he is clearly intelligent but just doesn't fit in with any educational situation. He's bullied when in a 'normal' setting, very unhappy, wanting to learn but is let down. I wish I had answers but have none. Only recently have we found any sympathetic HCPs, only now is he starting to get any help for anxiety etc, prior to this it was all blamed on autism.
No answers but a big hug from another mum.

I’m so sorry OP, you sound like a wonderful mother and it seems you have tried to do your very best by your son throughout this. I am sorry the system has let you both down so badly. It all sounds completely unjust.

Are there are private options you could consider temporarily, finances permitting? I hate that we now seem to live in a country where private options are increasingly the only options, and I know they can be eye watering, but just suggesting it in case there is anything that might be suitable.

I really hope it gets better.

I agree with contacting SOS SEN. I think they will look at decisions to advise on whether appeals are viable. However, it's difficult to appeal judges' findings on fact as appeals are primarily on matters of law.

What has the tribunal said should happen now in terms of Section I of your son's EHC Plan?