Having an adult with sen - people don't get it unless they live it.

[Lookuptotheskies]

My eldest child is in his 20's. He has sen, never managed gcses, is an adult legally, but realisitically .....

I can't leave him home alone all day, he never wants a hair cut, has a long scruffy beard that he doesn't want to trim, wears very "out there" clothing choices, often goes out with a cuddly toy, he never goes out alone, is always with me or another relative or a carer, wants to spend lots of money on eating out and has no realistic grasp of finances.

He laughs super loudly and over the top about things, but equally spends most of his time tense and anxious, still worries about illnesses since covid, doesn't want to walk on grass or mud or sand, doesn't want to talk about anything that doesn't interest him but wants to talk at me about his obsessive interests.

Wants to eat all the time (but its all very autism beige food, ARFID) but doesn't want to exercise at all and is gaining weight.

Doesn't want to socialise (I get it, I'm an introvert too but his sibling isn't and I find it hard balancing their needs).

Still needs taking to and from his day provision.

Wants to buy things all the time but then just hoards the things collecting dust in his room.

Needs me to manage his finances and his direct payments (this involves being an employer).

I love the very bones of him, but I can't help but feel sad and overwhelmed lately when I see other people's kids being independent and doing well in their lives. For us this is likely "it" for the foreseeable.

I also feel frustrated at times because he is an adult I can't force him to do things but I live with the consequences of his choices.

Does anyone else have a similar situation?? I just feel done in and very emotional about it all today.

are You part of any support groups for parents of dependent adults with autism?

How does he spend his days?

just you and him?

Yes I am and have been for years. Most have younger kids, the ones with kids my eldest's age all have varying levels of needs, some are still managing things like college/uni, driving etc. It's quite a wide range of situations.

Currently he has two carers and goes out with them each once a week, he goes to a day provision (school hours, term time) a couple of days a week. He goes to his stepdad's (we've separated) one night a week with his sibling.

He has a nice mix I think despite liking his own company he's not in his room all the time, but I am still quite "tied" throughout the week. I often dream about being able to go away for a couple of nights for example, or even a long day out! And it's hard to do anything like that with two kids of different ages with different wants and needs. Eldest's dad isn't any source of support at all.

I am in the same situation. My daughter attends a day centre for 3 days a week and has weekly overnight respite. Is there any prospect of respite for your son? It is exhausting and the local supported living offerings are dire so no prospect of anything changing. I worry about her future.

@vjg13 I'm glad you have that respite.

My ex partner, has my youngest (his) and my eldest (not his) overnight together once a week (midweek) which I'm so grateful he treats them both the same and it gives me a break.

It is a hard position to be in and I have carer fatigue, it feels like having a perpetual young child. I mentioned a more formal respite setting for your son because our young people need to be able to develop those independence skills outside of the family. Respite provision is very poor (shock!) within my local authority so we use one in a neighbouring one.

Similar here, plus progressive deterioration, tho I co-exist in unhappy marriage as I just couldn't cope on my own. We don't even have carers but no longer work.

At the point now to beg for respite and i am hoping that it might be possible to cover any period when I might need to be away as I am not convinced my h can cope on his own.

I agree formal respite away from family can be fantastic for them as well as us, when I replied I mentioned he goes to my ex's one night a week more as to say I know we won't get any respite as they will say I already get it.

We've just had financial assessment for his direct payments, for his carer's who take him out for a few hours a week and it is eye wateringly expensive. So there is also the financial element too. I fought hard for him to have direct payments when he was still classed as a child. Now as an adult he is attached to his carers and so wants to keep using them despite the significant weekly "contribution" (costs) amount.

Your comment about the feeling of having a perpetual young child is spot on. I just feel so tired.

Yogalight that sounds really tough. Personally I've found that the energy taken up from a relationship that's not working is even more of a tax on me. Splitting has been a no brainer for me both times I've been in that scenario. I understand every situation is different though and you have to weigh up the pros and cons of staying/splitting.

Thank you @Lookuptotheskies
I am just too old now to make a break unless we arrange for residential placement. There is a lot of complexity around my ds condition and I really need to write a manual for any carers.
Even my oh tends to be too flippant and we often disagree which landed ds in hospital previously and I would be scared to leave him in charge for long periods.

And then u hear from some people, oh, you do it because u want to do it 👿 I do it because there is no one else who knows what and how or even tries to understand the complexity and the reasons why certain things have to get done.

And yeah, financial assessment is keeping me up at night at the moment ☹️

My daughter’s direct payment all goes on respite which is over £500 a night. We have a carer who takes her out for 2-3 hours at the weekend and I pay her from my daughter’s benefits.

Respite has been mentioned on his last assessment, we have never done it so a new learning curve.

How do u convey the ins and outs of them for the carers, is it based on the hospital passport format or is there some other format?

@YogaLiteThe SW that did my daughter’s last care plan did a reasonable job of describing her needs so I provided that and also the care assessment from the day service which she goes to which is also accurate. I’ve also added advice on strategies etc when situations have arisen. My daughter was first able to go to respite when she was 18 but had to change provider at 26 (the previous one was at a residential school and college). It was a struggle to find anything suitable.

Ah, good point, thank you @vjg13
Never thought about asking the day service for their assessment. I will check with the SW whether to add the day service assessment.

I can feel it in my bones that on paper it all looks good but maybe not be so in real life.
Must revisit the hospital passport headings to see what else might be worth adding to the SW draft.