I was speaking to a carer (mother) who has a 13yo son with Down’s Syndrome. He needs help with personal care and, as he gets older, the carer feels increasingly that there is an issue of his privacy and dignity with her providing this. As I understand it, she visited this with social services a few years ago with a view to increasing the existing SDS budget to include additional support for personal care, but she was told that he was not old enough to require this.
I just wondered if anyone has any thoughts/experience they can share about accessing support specifically for personal care for young people with Down’s Syndrome or similar?
I don’t see how age has anything to do with it. At 13 he is already going through puberty, and if she feels uncomfortable and out of her depth as a Mum coping with sensitive personal care issues herself, then it is no different with a 13 year old than a 33 year old.
Lets not forget that most 13 year old boys do not want their mother interfering with them - a Mum is a Mum first, and some forms of physical care interventions are inappropriate and severely impact on - and may compromise - her important key role as a Mother first and foremost.
I guess I’m lucky to be a Dad of a son with Down Syndrome, and as a dad I can probably help out in some delicate areas where a mother might be best to stand back a bit.
I would probably feel the same way - in reverse - if I had a 13 year old daughter with DS, tbh.
When we go on holiday - for example skiing in the Alps, or on a sailing holiday - I invariably share a bedroom with my son - it just seems OK to share a room as a Dad, but its not OK for a Mum.
I sure hope so. I have found that its important to get a toe into the water as early as there is a need, and to build up a good relationship with social work - one of mutual trust - because the transition to adulthood always comes a lot faster than people realise!
Which is not to say that you can’t still have loads of fun together as adults.
(Photo- getting a toe in the water on a small dinghy at Linlithgow)
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