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How to help sister with severe autism cope

1 reply

dontstockpilethelooroll · 24/03/2020 10:09

Dsis , late twenties , has severe autism, learning disability and ++ mental health issues . Thought to have a genetic syndrome but they aren’t sure what - leaning towards fragile x as she’s had seizures before . Relies a bit on makaton, PECS etc although if she’s not too upset she can have a good conversation .

She lives in supported accommodation with a flatmate who has Down’s syndrome . Both need a great deal of care and receive support throughout the day, and have a carer on site overnight . Dsis has been experiencing dysphagia/poor swallow , we think either anxiety or side effects of her antipsychotics - so now not allowed to eat without staff present .

Both girls’ groups have stopped altogether, work placements etc, and they’re now indoors 24/7 - no garden, on first floor, and only three windows that can be opened - and all on safety catches so can only open them an inch or so .

They’re now struggling for food as well, carers are getting up at 6 to try and search shops and find them anything they can eat - which is very difficult indeed . Thankfully they have a fancy loo that acts as a bidet so don’t need toilet roll just now .

The carers are trying very, very hard but dsis is phoning continually, and carers have phoned/emailed saying she’s been very distressed . They’ve been told they can’t touch her at all, as minimal support as they can do and have to try and remain 2m back where possible .

We aren’t allowed to visit obviously, she can phone and FaceTime if she feels comfortable but we won’t see her until June or July, missing her birthday etc .

It’s breaking my heart to know that she’s alone, and scared . I don’t know how best we can help - she’s phoning frequently saying she’s hungry and she’s scared (more so of the police and the army, she finds anyone in uniform terrifying) .

She adores disney, sooty, mr bean, mr tumble, David Walliams and fairies ... Have been trying to direct her towards resources for children, found stuff via CBeebies and YouTube that seems to be on her level eg story telling, songs etc but I’m so so worried about her and at a loss of what to do for the best . If anyone has any ideas at all would really really appreciate it .

OP posts:
sleepismysuperpower1 · 24/03/2020 10:16

i'm really sorry, that sounds really tough for both you and your dsis. In terms of food, could you/ the careers order from muscle foods? they have plenty of fresh veg, ready meals, meat and snacks in stock, some of which could be ordered with the intention to be frozen if there is space for that. I'm not sure what to suggest other than that, but hopefully someone will be along soon who can. all the best to you and her x

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