Can’t stop crying and don’t know what the hell to do!

[SlobbySobber]

I’ll probably get told IABU but still…,,,,,

DTS2 (age 19) has Autism (on the more able end of the spectrum) and a learning disability. He exhibits challenging behaviour and has mental health issues. It has been an extremely difficult and stressful experience raising him as well as our other 3 DC.

I had to give up my career when he was younger as it was too much to work and deal with all the issues at school, getting him an EHCP, meetings. etc. He has moved educational placements 4 times in the last 4 years as they couldn’t cope with him due to his social anxiety, lack of engagement and refusal to follow instruction. He has no qualifications, no independent living skills and there’s no way he could work. He can’t do an internship or training course due to his behaviours. He was kicked off work experience as well.

Last educational placement kicked him out in June and he has basically been sleeping all day and staying up all night on his PS4 since then. Won’t go out or do anything. I’ve been desperately trying to find him a suitable placement in that time. Local Education Authority don’t care that he had no provision despite him having an EHCP which entitles him to an education.

I finally found him a residential college in early November that said they had no concerns about admitting him after I gave them his history. It was 3.5 hours away but amazing in terms of support offered, facilities and peer group. Stuff like on site psychologist, psychiatrist, physio, animals and calming environment in acres of countryside, lots of social activities. I really thought it could turn him around and was what he had needed for a long time.

We went down to see it and got the Local Education Authority to consult formally with them. I expected a battle with the LEA as I knew they wouldn’t want to fund it so got a solicitor ready and was prepared to fight to get him in there.

I found out today the college has decided they can’t admit him due to his behaviours despite knowing about them before and having no concerns and also bring specialising in Social, Emotional and Mental Health. They told the LEA 2 weeks ago and they didn’t inform us.

I am just devastated and have been sobbing ever since! The years of stress, of phone calls about him from school and college, meetings where I was made to feel like a incompetent parent, exclusions, having to pick him up from school, battling the LEA, him not learning anything, the constant stress of his behaviour and worry about how he’ll end up. I had to get in the shower so youngest DC didn’t hear and had a panic attack (haven’t had one for years). It’s like years of repressed emotions flooded out! I’m not soneond who cries and consider myself a tough cookie but this has broken me. I’m shocked at my reaction myself!

For DS as the place was perfect for him and could have put him on another trajectory and changed his life, and for myself as I really thought I’d finally found somewhere that would work for him, he’d be out the house and I could stop worrying about him and get in with my life. I’m just done with it.

I’ve actually recently gone back to work and I want my life back but I’m constantly worried about him and can’t get fully into it.

I now have to search again for a non existent provision for him which could take months and in the meantime his mental health is worsening and it’s like he’s wasting away. There just is no where else to put him!

I just don’t know what to do!

AIBU?

I'm so sorry

I don't have any advice I'm afraid. I just wanted to say I feel for you. I hope someone comes along with some helpful advice.

Take care of yourself

YANBU and I’m so sorry.

I’m not sure AIBU will be helpful - would the SEN board be as there are posters there who know what they are talking about.

That sounds so very hard, sorry.

I would try the sn board chat as lots of people have similar issues. Is there some treatment for these behaviours which are causing so many issues.

Can you appeal the decision? YANBU

YANBU. That is truly horrendous, and I am so sorry you have had to fight this. What parents with children with SEN have to sacrifice is immense.

I had to attend an education tribunal in May 2021. I wrote this to the judge. I wanted them to know what parents of children with SEN have to go through. Here is a part of it:

This is a war. A war I never knew existed. I never signed up to fight, yet conscripted I was. The adversary has the advantage. They are the victor of many previous battles. Wolves dressed in sheep's clothing. Wool is soft, this adversary is not. Many are too terrified by their reputation to fight, instead choosing to run away before the battle has even begun, but I will not concede. This is a war where I am the lone unarmed soldier, whereas the adversary has every weapon at their disposal. The others were right to run, their confidence in their convictions is intimidating. My heartbeat races. I am anxious, nauseous, and sweaty. I am unable to decipher their messages, more complex and secretive than the enigma code. I am blinded by my lack of knowledge of this complex world. The adversary knows the maps like the back of their hand, whereas I wonder from person to charity trying to make sense of this conflict. I fall for various booby traps and various cunning ploys. The adversary knows every trick in the book, and for myself allies are few and far between. When I eventually made it to the battle field the adversary arrived with full armour, I wish I had too. My thick skin was never going to be enough. My bloody lacerations are still raw and too painful to touch. My bare-bones are exposed. With all these scars I’ve accumulated as the fight goes on, I search for myself in my reflection in the muddy water. Only my Autism stares back at me. I was not made for this combat. I will never be enough. I have failed. I weep. Tears roll down my face daily. I cannot go on. I fall.

I pick myself up. I’m not ready to bury us. I will not yield. I cannot abandon my post; I am the lone soldier. No time for self-care. All my interests and relationships with others are a long-lost memory. Isolation ensues. I want to scream. I want to holler. I want to roar. I can’t, I’m exhausted. From the moment I wake up to the moment I fall asleep, but there is no safety in sleep. I wake up during the night and I pace the trenches. I never wanted to become a warrior, and forgo all my own hopes and dreams. War consumes all. I never signed up to fight. This is a war.

Thanks for the replies.

I didn’t post on the SN section as there is very little traffic there when I have posted before and I wanted to offload! Today is my day off and I was supposed to be getting everything ready for the weekend, shopping etc but I’ve done nothing except collapse on the sofa!

There is no treatment for DSs behaviours IMO except being in an environment like this college was with the psychological support. holistic therapies and experienced practitioners who know how to help him engage. I’ve tried and failed. He has a Social worker (for Disabilities) who does nothing and had many assessments for his mental health but still waiting for support.

No answers op sorry.
You sound like a great mum . Be kind to yourself.

Try to appeal , contact your mp, and the media if need be.

I hope you get sorted soon.

YANBU I'm so sorry.

Is there no way they can fund a carer to help coast him out of the house and take him places he enjoys? I know it'd be a battle for a while but it would help in the long run.
I know it's not anything like education, but it's something and the disability side social services should be supporting you and your son.

OP start looking at reputable providers Hesley group, SENAD, Priory Group all have good reputations. I know of young people well supported and very happy at Freeman College in Sheffield (my dd attends a school in the same trust) Try not to panic you found one placement there will be others.

I think it’s unfair to say the LA don’t care. What are you expecting them to do if even a highly specialist college can’t meet his needs? Every setting has boundaries and limits. They have to think of their other pupils too.

Oh god, Duvetday. that really touched me and is so true! I never comprehended that it would be such a battleground to get support for DS until I was in it. It’s like the LEA will fo everything to duck out of their duties. I know damn well DS would have ended up like this if he’d had more intervention earlier which I begged for. It took me until he was 15 to get him an EHCP despite him being so far behind.

He is such a beautiful boy with so much to offer if he had the right support. It kills me everyday that his life’s like this.

He had a twin brother who is leaping on in life which just makes it worse.

What placement is named in Section I? Why is the council not securing provision there?

Is it an independent setting? If it is maintained or a section 41 school, then the LA can override this, they cannot if it is an independent setting. Speak to IPSEA or your local IASS for more advice.

Also look for other similar settings as mentioned by op.

@hiredandsqueak

OP start looking at reputable providers Hesley group, SENAD, Priory Group all have good reputations. I know of young people well supported and very happy at Freeman College in Sheffield (my dd attends a school in the same trust) Try not to panic you found one placement there will be others.

that's a great point from @hiredandsqueak

Hugely frustrating that this college didn't come off. And I have huge sympathy for you, going through all of this again

But perhaps there are other options, possibly even better?

Suggest you check your household insurance policy in case you have legal expenses insurance, which might cover the cost of solicitors, if you have to go down that route

Is he on any medication? Some DC respond well to Risperidone. If he tried something like that and it took the edge off more explosive behaviours, the college might reconsider?

There is no setting in Section I @GingerAndTheBiscuits. It took 20 weeks of complaints to get his draft amended EHCP after his last placement called a Review in June so they could get rid of him. It’s supposed to take 4! I am still awaiting his Final Plan which I expect it still to be blank in.

The LEA should be able to identify a provision but they keep saying I had to find one then when I did request the residential one they immediately said there was a local provision he could go to (20 miles away) which they’d never mentioned before and they had 4 months, but even they can’t admit him till September next year as LEA could have consulted them before this September but they never did. It is similar to the provision that broke down in June so I can’t see how they can support him anyway!

I requested a specific interim home provision in October which they were supposed to have consulted on but they haven’t.

It’s not unfair at all to say they don’t care that he’s without a placement.

I tried other residential colleges all over the country before this but either he was too able or not able enough, or his SEMH needs were too great. We’re just out of options.

The college I requested is a Section 41 @imip. Are you saying their response can be appealed them? I don’t have much confidence the LEA will persue it TBH.

IPSEA are impossible to speak to, SENDIASS are useless in my area.

If your child is 19 then you can secure the services of an education law firm through Legal Aid so as to appeal the EHCP. As part of this you would get independent assessments without charge by Ed Psych, SALT and OT. These assessments would provide the evidence you need to determine the right provision for your son.

OMG getting an IPSEA appointment is the same as watching paint dry!!! It is so boring!

Have you complained to the Ombudsman OP? This is a classic example of the kinds of cases they see and the upheld rate for SEND complaints is huge.

Don’t give up. If they said it was no problem and fine at first, ask them what’s happened to change that after you have been told it was ok. I feel so angry for you, everything shouldn’t have to be such a battle for people with special needs children, as if we don’t have enough on our plate without being thwarted at every turn.

I wish I had something useful to offer besides a handhold.
I know the feeling of thinking that you might have something in place for your child that can make a difference only to have it yanked away.

It’s broken me twice - took me months to get myself back on the horse each time. You might need to just give yourself a period of grace.

Are you anywhere near one of these L'Arche communities @SlobbySobber? A good friend of mine worked with them for a few years and they do amazing work with people with LD (christian origins but you don't need to be one to be supported by them).

They have residential communities but also run day time support / training.

www.larche.org.uk/day-activties

so sorry. I have a young adult ds with profound autism and LD and very challenging behaviour. It is exhausting and endless.

I think further education is particularly difficult as the LEA obviously would rather stop funding after 16 if they can get away with it.
I second the idea that you may need a period of time off from it before you can re-engage.