We never had to tell our sons they had disabilities.
They both had brain disorders which left them profoundly handicapped and as far as we could tell they couldn’t understand anything we told them.
But we did have to explain about disability to their sister who was aged two when her first brother was born and four when the second arrived. We also had to explain to lots of other people – children and adults.
We tried to do it simply and honestly, describing the severity of the disabilities without in any way taking away from our sons their humanity and right to be treated as people in their own right.
The question of what to tell children who have a disability,illness or other condition which makes them “different” and when to tell them, is one of the many challenges facing their parents.
The best example I’ve seen of it is The day I told him he was “awesome” part one and part two at Autism and Oughtisms.
Awesome is an overused and often misused word, but in its true sense is the appropriate one for these posts. I am in awe of the sensitivity and creativity the mother showed.
Apropos of this, I recommend two very good novels.
Crash by William Taylor – the story of Poddy who has Downs Syndrome and Yes by Deborah Burnside – the story of Marty, a teenager with autism.
Marty Morgan, M&M, to his friends has the usual teenage problems plus a brain that doesn’t work the same way others’ do.
He finds it hard to read people and understand figures of speech; his fine motor and organisational skills are poor; and while he’s good at maths he struggles with all other subjects at school.
He has only one real friend, Luke – known as Legless though he does have one and a half legs. Then there’s Francessca with whom he’d like to be more than friends and his mother who’s going for a three month trip overseas without reservations and without his father’s whole-hearted support.
Luke ropes Marty into his team for the Young Enterprise Scheme (YES) where his ability to crochet becomes not only handy but a necessary part of the resulting business venture.
I was hooked from the first page and put the book down with great reluctance when I absolutely had to.
The characters are believable and the plot is entertaining with several serious threads woven through it.
The book is aimed at teenagers but like all good young-adult fiction will be enjoyed by older readers too. It could be of particular interest to anyone with experience of people with autistic spectrum disorders.
Yes by Deborah Burnside, published by Harper Collins.