Transcript
GAIL:
There may be other parents in the same situation. There are bound to be other parents. And I think one of the difficulties is families become very, very isolated, even more so as their kids get older, I think. So having those conversations with other parents isn’t always easy. But the carer services may be able to point you to other groups. There may be coffee mornings going on. I think reach out and try and meet other people in a similar situation. It would be my advice right across the board. However old your child is, starting right at the beginning, actually, you need to find your tribe early on and stick with them. But I think carer services-- a local authority have a duty to provide carer services. How that works in different local authority areas will vary, but they would be my first point of contact, I think, at this stage.
Maybe another idea would be to talk to some provider organisations who are currently already providing supported living or shared lives or what other services that are out there to help people live independently. They’re called learning disability support providers as a general term, but there are lots of them around the country. And every local authority will have a list of preferred providers or providers that they use more regularly. It might be worth contacting them to see if they are in touch with any older families who might want to talk to you about what they did. A lot of these providers will have family forums. Maybe ask if you can go along to one of the family forums, have a cup of tea, some cake, chat to some other parents. But that’s a really useful way, I think, of also talking to your peer group who have also gone through the same situation and getting some tips and advice about where to start.
I’d put a bit of a caveat on that, as well, and say, there will be some people who are unhappy with their support. So don’t be put off by other people’s situations. Because the last thing we want is for another older carer to say, oh, don’t do that. It’s terrible. We’re having an awful time.
I mean, that will be happening for some people. But at this stage, the planning and all of that, thinking about it, is the most important bit. The other bit, you can work on later on. So yeah, those two things, I think, would be a really good starting point, and that’s what I would advise people to do. I think what helped me more than anything to advocate for Guy, my son, is that I learned very early on about the law. And knowledge is power. I’ve discovered that quite early on when he was very young in the battles for education, in the battles to get a break. Guy has very complex learning disabilities and needed a lot of support, needs a lot of support.
And so in some ways, for me, it was easier because he was very obviously disabled enough to be able to access some of those services quite early on. But it was still a fight, and it became a fight quite early on in his life. So it was that going from, which happens to a lot of parents, I think, anything for a quiet life sort of person to warrior mother within a few very quick years of him being very young.
So finding out, I did an Open University course. I did an Open University course on social care and the law because I thought, I need to know what they’re being taught. I need to know the law as it relates to my son. And I did that probably when he was about 10. So I started quite early on, and that’s helped me through the years to advocate for him in lots of ways. But the biggest thing by far that anyone can do, that I think is the most powerful and the only thing, apart from knowing your rights, is learn about person-centred planning. And I don't just mean that the term ‘being person centred’, because that’s bandied about like it’s a thing that happens everywhere. But actually really, really learn about what person-centred planning is and what it means to be person centred. And there are courses around that you can do. And that, for me, when Guy was 12, was the turning point.
Because the most powerful thing about it for me was not only did it put him right at the centre of everything that we were thinking about, it helped me to step into his shoes and put myself in his position. It helped very much, when it came to him becoming an adult, to see him as an individual in his own right. But one of the most powerful things is it wasn’t just me as his mum that was saying all of this stuff. So I couldn’t just be labelled as a difficult parent. I’m sure I was quite a few times. But it wasn’t just me saying it.
It was everyone else that was involved in that plan, that knew and loved him and that knew him really well-- his teachers, the staff at the respite centre, his sisters, his grandma, his auntie. Everyone who knew him were agreeing what support he needed and what good life for him would look like. And we did that planning right from the start and have done that throughout his life, so constantly reflecting, going back, checking that how his support is from his perspective.
And some of those things have been quite difficult. I mean, he decided quite recently, before lockdown, that he didn’t particularly want to come and visit me anymore at home, which I found really upsetting. But he was very clearly telling me, actually, Mum, I’m fine. I’m having a lovely time where I am, and I’d much rather be out doing this than coming and sitting in your house. And it’s boring. He couldn’t actually say that, but his body language very clearly was. But I always listen. And I’ve always prided myself on listening to him. So that is for me the key things that you can do. Learn about I can’t honestly reiterate it often enough. Person-centred planning, if it’s done properly with the right people and the right-- can be so powerful and really helps. I suppose they’re the two key things, I would say.