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.

@Polkadotpompom would suggest requesting an urgent review with social services. At a similar age my son had daily support (6 hours a day) with an assistant and a range of activities paid by direct payments. Keep pushing and remember that it is cheaper for them to keep your son at home and keep him occupied than to cope with you going into crisis and him need care in the community. If you don't have a designated social worker, prep for the meeting - don't assume they know your circumstances. I would also request an updated needs assessment and carers assessment for yourself. Its hard but you need to drive this forward. My son hated respite so we didn't follow this up after a few bad experiences.

Hi, I know this post is a little old but I just wanted to say I feel the same. My son is 14 autistic, learning disability, OCD. I am just anout surviving at the moment. I cant imagine this being my life for the rest of my life. My son is housebound with OCD and every day is just stress and misery. I have to keep telling myself there will be more to my life than just caring. I love my son but its too much for one person to bare.

Sending you solidarity @Mooseylooseyloo .

I've spent today helping my eldest tidy his bedroom. Hoovering and dusting all his cuddly toys, clearing out hoarded rubbish, insisting his bedding needed changing, etc. I had to do most of the work and hates anything of his being moved or touched so we don't do it often.

I've also waited half an hour in the chemist for his presciptions.

When I was in my 20s I had a partner, a mortgage, 2 jobs, etc. He's still watching kids shows and can't be left home alone all day.

Got an surgery date yesterday and I don't think I can have it tbh.

Im 44 now, my partner left me last year after almost 5 years together as he saw no future after my son has his first OCD crisis and I had to sit with him 24/7 for a week. I have been off sick from work for 5 months in the last year. This recebt crisis has broken me, its been 2 months now and no end in sight. Im worn out and so miserable, sending strength to you.

As a carer you are entitled to a carers assessment, someone will come out and assess YOUR needs, you are also entitled to a set amount of hours/weeks a year for respite, paid for with Direct Payments.
Local councils also give up to I think it's £250 every other year for you to spend on something that you want , a hobbie, day away, meal out etc etc.

First thing is get a carers assessment, then go from there

I know this is an older thread, but I’m in a similar position. My son is still in full time education, he’s just turned 16, he’s non verbal and autistic. He started having severe meltdowns back in February after previously being the happiest person I knew. It seemed to be school that set him off but we never got to the bottom of the cause, it took months but eventually he had sedated blood tests, which came back fine, so m not waiting for the learning disability team to refer him to a psychiatrist that specialises in learning difficulties.
He seemed to calm down a bit over the summer but it escalated again this week, he’s pulled chunks out of his hair and now has a bald patch, I have bruises from trying to stop him punching himself in the head. I feel hopeless, I have no support.

He only wants me and now has separation anxiety so I can’t go out without him. He’s refusing to go to school. I can’t work, I have no friends, my family don’t even call to see how I am doing. His dad sees him but doesn’t have him on his own apart from when I nip to the shop. I’m surviving on about 4 hours of broken sleep a night and the thought of this being my life until I die is terrifying.

@Number4224Does your son take any meds to help with the anxiety?

We have found that fluoxetine has really helped our dc. We had a real battle getting it (because everything is always attributed to autism which we should just accept) but we knew there was other stuff going on.

The fluoxetine had a positive impact fairly soon and drastically reduced the ocd type behaviours which were causing a lot of distress. There are still ocd/ritualistic type behaviours but they are nowhere near as debilitating.

It might be worth speaking to a psychiatrist/LDCAMHS?

@Number4224 are you in England? Does DS have an EHCP? It sounds like you need an early review of it. What support is currently in there?

Have you had social care assessments? A carer’s assessment for you and an assessment of DS’s needs?

@scoopofmintchocchipicecream, yes he has an EHCP, he was diagnosed at 20 months old, we’ve had a social care assessment and have been awarded 5 hours a week in term time and 8 hours a week in the school holidays, but I’m struggling to find someone who’s suitable to look after him. We be been told that the council can use an agency but it probably won’t be the same person every week, which just won’t work, he needs someone who will get to know him.
I’m emailing the learning disability team today to tell them how bad it is at the moment and see if they can push for a psychiatrist.

They have been great but you just have to tick off so many boxes before you get even get on a waiting list for a psychiatrist.

I’m just so exhausted, everything is a fight to get him the help and support he needs

@boobybum, thanks for replying, that’s what I’m pushing for, but everything takes months; I started all this back in February, and although we have made some progress in getting support, it still feels like we have a long way to go.

@Number4224 I would request an early review of the EHCP. It sounds like it needs improving.

I would also request updated social care assessments. The LA can do more than just refer to an agency. What rate of funding is the LA offering? A higher rate &/or a higher ratio will help attract people to the role. Have you tried asking if anyone at his school wants some extra hours? Do you have any universities within travelling distance that run healthcare &/or teaching courses? Some have success recruiting these students if that would be suitable. Does your LA have somewhere they advertise PA roles on behalf of families? Has the LA looked at other ways they can support you e.g. by funding a cleaner (they may tell you they can’t do this, but they can) to free up a bit of time for you.

@scoopofmintchocchipicecream rhank you so much for this information. I will definitely contact the LA and find all of this out.
we got his EHCP updated in June and a representative from the LA was supposed to be at the meeting but no one turned up

@Number4224 even if the EHCP was updated in June, I still think an early review and further support/improvements would help. Unfortunately, LAs don’t always attend.