For a long time it seemed that Tony and his mother had simply been forgotten, left without support to struggle on alone. Tony had always been keen to try new things and build up his skills but there were few opportunities to do this.
Then a resourceful social worker found out about Sense’s TouchBase South East Centre and a new journey began for them both.
“For as long as I live, I will never forget that day” says Janet. “Tony
walked in the door and said to me, `You’ll never guess what I’ve done today Mum
– I’ve been rock climbing.’ When Tony was young, and could see better, he used
to love climbing trees with his brother,” she says, “but I just couldn’t
imagine him ever doing anything like that again.”
Five-year-old Annie has been on a difficult journey that families of a child with complex disabilities will recognise. But in some ways, as her parents Ali and Michael acknowledge, she has been fortunate. They were able to get specialist help for her from Sense and this has made a huge difference to her life.
Sense wants all families with a child with complex disabilities to receive this level of support, and our new strategy – including the development of services and our campaigning work – aims to drive this forward.
Children who have a disabled sibling may have to learn to put their own needs on hold to some extent – but the Sense Siblings Weekend was just for them.When the children and young people arrive for the siblings’ weekend some look a little wary and there are even a few tears; others give barely a backward glance and get stuck right in away, rushing over to the painting activity and making instant new friends in the way that only children can.
They have all come away for a weekend of fun, friendship and adventure at a PGL centre near Swindon – and what they have in common is that they all have a brother or sister who has a disability. Having a sibling with special needs can be a mixed role, and whilst Sense’s experience is that many will grow up to be particularly kind, thoughtful and mature people – and love their disabled sibling to bits – they can face challenges too.