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Worried about whether ds will be able to live independently - any tips?

8 replies

UfoTofu · 01/09/2021 17:32

Ds is 20. He's at a good university, reading something academic and academically doing extremely well. But he is also severely dyslexic - not in the sense that he can't read or write, although he tends not to read and he finds it v difficult to write in anything but streams of consciousness - but in the sense that he cannot organise himself at all and finds every day tasks a real challenge. On top of this, he has serious mental health issues which mean he needs 2 weekly supervisions from a mental health professional to ensure he is taking his medication and that he is ok (he's on antipsychotics, he's either bipolar or schitzophrenic - they are not entirely clear at this point, if I were to hazard a guess, I would say bipolar).

I felt enormous joy at the fact that he had lasted his first year without a major incident but when he came home I was horrified to find out that he had seriously burned himself. Apparently he was cooking and someone gave him a fright and he managed to pour boiling oil on his arms and chest. The burns were horrendous. Luckily I had sent him off with a massive first aid kit and he had used that to treat himself, plus doing all the things he should do to treat a burn but what he didn't do, which he should have done given their size, was get help. He also didn't mention this to anyone.

He will now be permanently scarred. I also noticed he had stopped brushing his teeth. But he had done other things like his clothes washing, bed linen washing. He didn't apply for extra time in his exams but he said he would do this year - they sent a severely dyslexic person forms to fill in and he couldn't do it and didn't ask for help.

I've had a chat with him but I'm just not convinced how much goes in. He is desperate to be independent and good for him but this quest for independence seems to mean that he believes that asking for help is a sign of failure. I have told him that a sign of being an adult is actually knowing when you do need help and it's certainly not failure if he gets help but that struggling through on your own (like he did with the burns) is likely to cause him more problems than not!

Has anyone got any other tips for me that I can use with him so he understands that seeking help is no bad thing? I am a bit worried now that he hurts himself again doing something and doesn't tell anyone! He is so lucky those burns didn't cause an issue - they were absolutely enormous and it's only because he did look after them so well in the end that they didn't get infected!

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JuneOsborne · 01/09/2021 17:39

Yeah, I'd be worried too. But, he did take care of himself when it mattered. And he's no doubt learned something from it.

The forms thing is really shit! I'd be contacting the university with his permission to talk to them about this. They need to see how ridiculous that is, not just for him, but other people in his position!

If he's academic, are there any courses he could do to help him? A first aid course, a cookery course (I've seen some cool dhosa ones locally)? Basic engine maintenance? Power tools course?

Finally, would he benefit from crib sheets for important stuff?

You sound like you said all the right things, I don't think you could handle this any differently, feel for you!

Phineyj · 01/09/2021 17:42

I am concerned that he's meeting a HCP twice a week and they didn't pick up on the burns. Is it over Zoom or something? I feel like you need a buddy type person to check in on him weekly. Presumably university welfare services are aware - could they recommend any buddy/mentoring/befriending schemes?

campion · 01/09/2021 17:55

I think you'll need to be more pro active and emphasise to the university welfare service / student support etc the level of support he needs. He sounds like he ought to have some disability support tbh.

Of course, you'll need his permission to do that, a fact that actually gets in the way of helping them sometimes! If he was actually in university halls when he was burned that's worrying that no one even knew or suggested hospital.

If he'll accept it it does sound like he needs lot more help, especially if he tends to have rigid thinking.

twinkletoedelephant · 01/09/2021 18:02

Could he (or you) afford a personal assistant for a couple of hours a week? Dh mum does this kind of thing pop in check on correspondence, and help reply or help with forms and things if there are appoints due etc. Update whiteboards of things coming up in the week and what time and generally check everything is going along ok... report issues if needed or encourage areas that are falling behind, ie washing is piling up. Or stack of post not looked at. She is a very organised person and really lives this kind of thing and is allways booked up

Harpydragon · 01/09/2021 18:09

I feel your pain, my son is dyslexic and dyspraxic and this is one of my worries for him add his organisation is rubbish too.

Hes in his final year at school and we have helped by getting him a diary so that he can write important things down. He has a whiteboard to write a plan for the week, I have spent times showing him how to cook and follow a recipe. We go over and over and over things to make sure he has got the basics for what he needs.

Does his university know of his additional needs? If not they need to be told pronto and perhaps they have a service that can help or that he can drop in on.

A first aid course might help as might a basic cookery course but other than that I'm not sure what else you can do other than drum into him that it is ok to ask for help if he is stuck.

I don't know how open he is about his condition, but once my son was able to tell his friends what was going on with him they were great and very accepting of his quirks. If your son feels able to do so this might be good for him too and he might feel better asking friends for help if he needs to.

gogohm · 01/09/2021 18:16

We are in a different yet similar situation, dd has already had to pull out from university once following emergency psychiatric treatment, we try again next month. If this doesn't work I need to look into long term care options because living with me forever isn't going to happen, she's hard work!

Dps dd lives in supervised accommodation and one resident has the same diagnosis as my dd so I'm guessing that there is a possibility

UfoTofu · 01/09/2021 18:30

Thanks all that's really helpful and you've made me feel a lot better!

Yes due to Covid, all his visits were virtual so no chance to see him in person. He is also afforded via the disability student thing, a mentor for a few times a month. But he has to actively book it and if he doesn't, they don't force it on him.

I actually think a first aid course and a cookery course are a good idea. I'm going to look into those now thank you.

I'm trying really hard to only help when he asks me - so he's now actively asked me to help with his extra time in his exams so I feel I can now help with that. He has also asked to go back to university early so he can get settled in before the crowds come which I think is sensible.

@twinkletoedelephant your dh's mum is exactly the sort of person that would really be of help to ds!

I can understand when resources are thin on the ground that they only help those asking for it - the problem with mental health problems is that often the ones that need the most help are the ones that don't ask!

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UfoTofu · 01/09/2021 18:31

@gogohm I'm sorry you're in this position, it's so difficult

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