Last Christmas set me thinking about the joys and trials of being the parent of a disabled child. It began while spending a month working with a group of disabled kids on a Christmas show for Graeae Theatre called Deck The Stalls. It was really wonderful to see these kids blossom and grow as the show took shape, but the highlight was their joy after they had performed in front of appreciative audiences. Through my time working with this gang of future stars I was struck by
The differing behaviour of the kids and the parenting styles of their families. While I understood what might lay behind these differences I found it strange that some of the kids seemed to have never been told “no”, and so saw nothing wrong with doing whatever they wanted. It reminded me of when I was a kid’s TV presenter back in the 1990s. Most of the children that appeared on the shows I fronted were great, but a few had been so spoilt they were almost feral.
My parents were also guilty of over indulging me. However this happened mostly when I was small at a time when I was still battling cancer and my parents were still unsure I would survive. If every day might be your last with your child you are going to try to make it one to remember. One of my earliest memories is the weekly presents my younger brother and I received for no real reason. This slowly
changed when I reached an age of five and my parents were told I had reached my first all clear. At this time I also started at school. My parents fought to send me to a “normal” mainstream school and not the special school they were advised to send me to. This direction was the main theme of my upbringing. Just because I was disabled it didn’t make me different or “special” in any lesser way. My parents did their best
to teach me I could do or be whatever I wanted.
One example of this is another fond memory. I could not ride a bike as I could not balance and tended to fall over as soon as I gave it a go, which I did much to amusement of my mates. So my mum got me a tricycle which opened up my world. Suddenly I could go out with my friends riding around my home town. It also allowed me to go to school on my own. My crazy orange trike gave me independence, and as I look back it is this that my parents wanted to give me the most. Even when I was ill at the age of fifteen, which led me to become a wheelchair user, my parents main aim was to give me back that independence as soon as possible. The key method they used was to let me fail and then to pick myself up and try again, and to keep trying until I succeeded. My mum was always there to support me but would only help if I asked
or obviously needed it. Knowing I was the captain of my own destiny gave me the confidence to try and try again. Plus it made me sure I was as good as any non-disabled person (if not better). But they also made sure I had boundaries, and although I might be able to get away with being naughty because I was the cute disabled kid in the outside world, at home I would get it just like my little brother. No special treatment!
While I will not be able to pass on this style of upbringing to my own children, as my cancer treatment left me totally sterile, I would advise any parent of a disabled child to keep it in mind. Studies show that giving a sick child something to look forward to, and thus fight for, aids their chances of recovery, but this has to be balanced with giving them boundaries as well as the in- nate knowledge they are amazing and can achieve anything, even if they need a little more help than some of the other kids.
Given the knowledge that being disabled only makes them different and not less or open for special treatment means that disabled kids will grow up to be disabled adults who will fight for an equal chance in life and who will have the skills to take advantage of the opportunities that come their way. I mean it really worked for me.