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Moving son to Supported living - Carers UK Forum

Moving son to Supported living

For issues specific to autism / Asperger Syndrome.
Hi everyone, my son is 20 and has severe autism with severe learning and behaviour problems, he is non verbal and need full help with everything including personal care, he cant really do anything himself has no communications at all , he never understood pecs or other commuication ideas so his needs are met basically because i just know lol and due to him being older now and my inability to cope with him or his outburst i have started the journey for supported living, but i feel so guilty! and scared! ive had a first meeting with a potential home which sounds idea but it just seems so overwhelming and i worry because he has no communication and unless hes prompted to do things like drink or eat he wouldnt, its so stressful i think i just need some positive experiences! any advice? words of wisdom for a very stressed out mum!

Thank you!
Hi Sarah,
the level of staffing and whether the staff have the necessary skills and training - will be key. Also his care plan, which needs to state all the things he needs help with and how best to support him. A communication passport would be helpful too - a guide to the sounds and movements he makes that give clues to how he is feeling/ what he needs - so that staff can anticipate his needs. His day centre may have one already that you can add to. Will he still attend his day centre when he moves to supportive living?

Two families I know have adult children who are have similar needs to your son and are in supported living. Both sets of parents are still involved in advocating for their son's and keeping an eye on the care they receive.

Far better to make the move now than to wait: my son is severely autistic but has some speech and some skills, so there was one less worry for us. The move went well, and a few years later my wife had a spinal cord injury that put her in hospital, and subsequently spending a lot of time in a wheelchair. Had Mike been living with us, I'd have had to have asked social services to take over his care and it would have been the first (almost certainly bad) placement available.

As it is, he's happy in supported living, and we get to fight his battles while we still can, but without the daily grind of caring for him and managing his outbursts. He usually goes on holiday with us once a year, and we have Sunday meals together - either at our house or his - with the occasional restaurant or other family event.
It's vital that he makes the move asap whilst you can give him and the staff caring for him lots of support.

My son became a boarder at school, then college, then a residential home for a while, because of my failed health.
In 16 years the longest respite I ever had was a summer residential scheme, dropping my son off on Monday afternoon and collecting Friday morning, so only 3 full days off, when I frantically caught up on jobs I couldn't do while he was home.

I then dared to ask for future schemes to be Saturday to Saturday, but was told that would be too exhausting for the staff, mainly college students!! No consideration at all for me caring the other 300 days a year!!!

My son is now 43, he has a lovely flat which we have made a really cosy "home from home".