1. Claire and Joe “As a younger mum”
So as a younger mum, I don’t often get to say that these days, of a disabled child. My child is seventeen, and he has downs syndrome and autism. It was really interesting for me hearing other mothers, from another generation talking about their adult children, about the journeys that they’ve been on, and yes, things have changed but there’s so much that really resonates for me and also other mums and dads that I speak to who’ve got disabled young people, some of the same feelings, absolutely the same concerns, and this focus of the future, and what’s going to happen when I’m not around? And longer to care for them and meet their needs that came across powerfully, and that is still such a powerful thing for parents.
Even though, parents of my age and younger now know that there are some different options out there and it’s more generally accepted that our young people will move on from us. But also there’s this really difficult issue that a typical young person, they will move away naturally, and that doesn’t happen with our young people. We almost have to kind of, force that separation and depending on, who we are and our ideas, and what support we have, how much time we’ve been able to give thinking about this, that will be, something that we feel ok about, all the way through to feeling absolutely not ok about. And a big part of that is ‘ok’ I know that it’s right that he moves on and has a chance to live a life separate from me and independent from me. But, is he going to get the care that he needs? Is he going to be looked after the way that I know he needs? Is anybody going to be able to look after him in the way that I can look after him, or we can look after him?’ and I’ve spoken to lots of other parents who feel that way and worry about how their daughter or son is going to be cared for and how their needs are going to be met? And how they are going to spend their time? What sort of activities will they be able to do? And who will be the people around them? So all these things that the older mothers are talking about, are still really live issues, for me, and for other parents as well.