Our CHD2 son is now aged 21 and has for the last year has been bossing us around in our own home: making decisions about who should be in what room with him and telling the other parent to go away. On a personal level, that can hurt.
Not only that, but since he is intellectually much younger than his ‘real’ age, he also has lots of toys everywhere in the house, with different types of train track extending through every room and down the corridors. I am endlessly tripping over them… and on a physical level, that also hurts!
We decided that it was time for a rethink…
Initially we considered adding an extension to our house and making this into an independent space and sensory room, with a separate entrance for him and his personal assistants (PAs). We had big ideas, but cost-wise this was a lot of money to spend if it didn’t work out.
And then slowly the realisation hit us that actually he was bored of us, not even choosing to go anywhere with us at the weekend when we had plenty of time to spend with him. After 21 years his new personal assistants were so much more interesting than us and more accommodating to his wishes.
At some unspecified time in the last two years he had decided that he wanted his independence and his own home, despite not understanding or realising the implications involved. We had naively assumed that he would always want to be with us. We were so wrong!
I remember many years ago chatting to a friend who had a profoundly disabled child who was non-verbal, incontinent with a tracheotomy and PEG. She mentioned that she would have to tend to his medical needs for the rest of her life. A specialist replied to her, “Why do you think he will want to stay with you for the rest of his life? He will be bored of you.” This comment stuck with me as it did my friend – what? We weren’t going to be the most important person in our son’s adult life?!
And so here we are, and I didn’t expect it to happen so soon – our son thinks he doesn’t really need us anymore (despite needing lifelong supported living). He is wanting to make his own decisions – even though he has no idea what living independently involves! – and, as well as being his parents, we are also his court-appointed Deputies and we have a duty to respect his wishes and try to enable his choices where possible.
I did imagine that finding the right place would take another five years or so, but then the ideal flat turned up five minutes walk from our house! It’s far enough away for him to have some independence from us whilst being assisted by his daily personal assistants, but close enough for us to rush over there should he need assistance after a tonic clonic seizure etc.
Will this work, who knows? But we are going to give it a try. We’ll be posting about how it goes and what the experience is like.
And so this will be our story…why not come along with us for the ride?
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