Disabled adult son

[Noras]

My son has complex needs including ASD, language and motor disorders all now neatly diagnosed. He is now an adult with poor executive functioning so I have to explore all educational opportunities and training etc. I also have to complete all PIP applications and now an application for universal credit for him. I also have had to argue his case over EHCPS for years. The upshot is that I’ve managed to get him into a good place education wise so that hopefully he can do a foundation degree. He will hopefully get life skills course next year but that is not residential. The question I ask is this. Am I unreasonable to be exhausted now by it all? I have looked after him through my mothers terminal dementia, my father’s terminal cancer - whilst nursing my father. I have fought to train him to talk well ( he could not talk at aged 8/9 just gobby hooked). I trained his motor skills with endless exercises and swimming. I even taught him to read when he was still classed as deaf. My H is fantastic and does so much too. But I’m just tired. I looked at yet another form (universal credit) and my heart sank. In the words of Queen ‘I want to be break free.’ My son needs so much ongoing support with his college work and then I end up the drudge in the house. I have not worked since he was born - he was quite unwell before aged 10. Had I worked he would not have got where he did. I have told him that I have to have my time now, get a job and have some purpose. I’m so old and have not worked professionally that I doubt that anyone would want me. AIBU telling social services that I now need them to step in once my son leave college and get him a PA or proper carer to do everything for him including cutting his finger nails or should I still care? Realistically unless he moved into independent living we would still end up caring so I’m not sure how I will ever have freedom. He struggles to do cleaning ,is scared of a washing machine and can do light washing up but not complicated washing up. etc. Even an evening out needs planning as I have to find someone to act as PA. He’s scared to be left alone at night. We have only just received one evening a week PA finding after 19 years of care. Sometimes I have felt so trapped it’s like being imprisoned. The moment when I have an evening off are like suddenly being able to breathe but then I feel guilt not taking him with us hence have to arrange a PA (I currently use ad hoc people ) an outing for him eg cinema etc.

Op please tell the SW you are on your knees and about to break. Direct them to find supported living for him asap. If he’s close by you can still spend lots of time together but also live your own life. You have done an amazing job so far and now it’s time for your son to expand and grow new skills. Supported living can be fulfilling and enriching for many.

All of this. I have a severely affected disabled son who is still pre-teen but my conversations with CYPS and other professionals have all involved the idea that the life stage of moving out (yes, usually to university or a job or whatever) is part of the life cycle for both child and parent and still can be where there are additional needs. Obviously for a young person with high needs this is going to be to supported living or residential school or care but still to be considered. You have sacrificed your life to date to love and care for him and you can still do that but the state should be stepping in now to do their part, too. It's awful to think about and say but you're a person too and - while many parents or carers would never countenance it - putting some of that responsibility onto a suitable outside agency isn't wrong. There is a huge range here from PA hours to full time living out of home, but explore it all. Is your son over 25 and therefore out of EHCP territory? I do realise they terminate the plans early all the time so even if he did have one it may no longer be in place, which is a disgrace. I am with you, sending solidarity, strength and compassion your way.

I don't think your unreasonable to want to relinquish care of your child now he's an adult but this might be difficult to do if he still lives with you.
How would you feel eg about him living in something like supported accomodation? Start planting the seed now.
I'm a little confused by his level of disability though as I'm wondering how someone with such poor executive function would manage a foundation degree ( I understand intelligence is something separate )

Thank you everyone. My son is intellectually ok ( except for some issues with sequencing, memory etc ) but his ability to socially integrate is non existent, (pragmatic language below 1st percentile) he has high anxiety etc. His complex needs combined restrict independent living skills. His executive functioning is about 1st percentile. Receptive language 1st percentile. Motor on 0.5 percentile. I have had a social care assessment but got one evening off a week but have yet to be found a PA. I don’t like going out without him doing something positive also. I rely on ad hoc people to PA as we have no PA as yet. The social care assessment took a year and only got completed in December by which time I felt like I was a prisoner on day release. They have promised to advertise for a PA but so far nothing. I have just put in a claim for an assessment for unfit to work for next year when he does a life skills year so he can get universal credit. It’s those forms that upset me the most plus combined with the EHCP reviews etc. We had that ( transition EHCP review) this week for transition and the entire team participated eg OT, IT tech, Head of College, Social Services and the flipping SEN team did not even bother to show! So now we are in abeyance waiting for a consult and whether he will get life skills next year. And then I get the Head ringing me at 4.00 on Friday to tell me he had been banging his head etc. I’m hoping he does not need an interview for unfit to work certificate especially as there is a team saying he needs life skills etc. I get stressed myself and those forms etc are horrible and just make me cry and are distressing.

@Noras We have gone through the universal credit process on behalf my stepson, it was actually a very easy process. He did have an initial appointment with a work coach to take in his paperwork (passport, proof of address, etc) he told us to get a fit note from the gp with an indefinite expiry date. He then had his medical assessment over the phone, which was again pretty straight forward, I was told at the end of the call he had been awarded LCWRA.

We have really struggled with the whole transition from Child to adult care services, there has been little to no help with the next steps for his life.
We thought he would be at college for alot longer but in June/July the college informed us he had completed everything they could offer him, so that was the end of that, he has been stuck at home doing nothing since then. I contacted adult social care initially to ask about day centres & funding, which has led to him finally being assessed. At the moment his case is going back & forward between themselves & the learning disability team, neither seem to want to take ownership??

I feel so trapped, he very rarely wants to go out but cannot be left alone, I'm beginning to think our only option is for him to go into social living.

Does your son have PIP? This really helped with the universal credit application