Feeling trapped caring for my adult son with additional needs

[Polkadotpompom]

My DS is 24, I also have a dc age 10 aswell.

DS does one day a week at a day centre place 9-2:30, and has two short outings with P.A.s each week (both 3 hour outings on different days). My ex partner (youngest's dad) has both kids one night a week on a school night.

I can't leave DS alone for any length of time. Anytime he goes out he is supervised. He is very anxious and reactive of people. Very literal and blunt and negative, which makes conversations hard work. He also has no sense of personal safety. He hates mud, grass, sand, animals, babies, noise, people, germs, rule breakers.

I miss freedom, being able to go to the beach, book something spontaneous, having a chunk of a couple of days and nights to myself etc. I've no job now - had to give up that juggle a while back so I don't have that side of me outside of the house either.

I spend hours and hours in my garden (it's my little sanctuary) but I long to go to the beach or for a long country walk and lately even my garden isn't doing it tbh - I just feel trapped.

Does anyone else live like this and feel this way? I'm so fed up.

I’m sorry things are so tough right now.

It sounds like you desperately need updated social care assessments - an updated assessment of DS’s needs for DS and a carer’s assessment for you.

Does DS still have an EHCP?

No he no longer has an ehcp now but he does have a direct payments set up for his PAs and his one day a week placement. He pays the full contribution amount towards these.

Its updated once a year but I don't know if they would add any more to it.

In an ideal world I'd have just a week off once a year even. Or a weekend now and then.

I feel so stifled and fed up.

I think when he was a child I had an unknown that maybe he would be more independent whereas now I can see that this will be it long term. This is who he is, and how much care he will need from me ongoing.

Push for a review now. If social care doesn’t agree an increase in support, you can challenge their decision.

Surely your DS would qualify for respite but you have to request it in the assessment with a social worker.
I know people who get a weekend off a month and we have in the past requested a week here and there.

Better still, u could start thinking of supported living ?

I know so so many SEN families and I think I know one that has had weekend respite now and then over the years!

I just feel like it's a moon on a stick request when even legally entitled basics like basic educational needs being met is a battle.

Maybe I'm just tired and cynical.

Supported living isn't something either of us are considering at the moment, he doesn't want it and neither do I. In my area it seems to leave a lot to be desired tbh.

I will see if I can summon up some battle ready energy to get in touch with the la and ask about respite.....

It often takes a fight, but it is possible to secure further respite.

Social care should be reviewing your son’s care plan each year and it is totally reasonable for you to explain that you need greater support and respite. I have a 28 year old daughter and we are able to have a night of respite each week. She started respite at 18 when she moved to adult services although attends a different one now. We have managed to get it weekly by increments over the last few years.

Yes, @vjg13 is right. I made a mistake letting it drift and got myself completely run down and it's now a battle to justify it.

You have a right to it, they are not going to come to you unless u start the ball rolling.

The whole system is so messy and complicated, there is no appropriate respite in my area and the onus was on me to find it. The examples of supported living that I have visited have not been suitable (to be polite, left one in tears) but the local authority won’t support any other care model.

Yep, we tried to convince SS that supported living is not suitable for mine with no luck. It's only after one failed respite in a supported living place they agreed.

But there are different places around and although it's a long and tedious process, it's worth looking because if u don't, they definitely won't.