When a mate of mine asked me if we (PVINZ) had a theme for our conference this year I proudly said “ sure… We Are Celebrating Success “….. If looks could tell I surmised that he wondered what a group such as ours would have to celebrate?
I reflected back to a book published a few years back titled ‘FACING THE CROWD, Managing other people’s insensitivities to your disabled child‘. I read and reread that book by Deborah Fullwod and Peter Cronin from the Burwood Educational Centre for Blind Children in Melbourne. I read it because it answered many of the questions and difficulties I experienced with family, friends and acquaintances who seemed unable to appreciate how we felt about growing up and coping with a disabled child in the family:
To quote: ‘Generalisations’
Parents often discover that the community abounds with as many sweeping notions about disabled people as it has about other minority groups. Many of these notions are inaccurate, and even when there is an element of accuracy they can still be irritating because there is a presumption that they automatically apply directly to your child. Like many other statements causing difficulty, they are usually offered with good, if somewhat thoughtless intentions. However when you attempt to refute them you seem to be assuming a ‘know all stance’.
- ‘ All blind children are good at music aren’t they… Look at Stevie Wonder and Jose Feliciano’
- ‘We always have a blind piano tuner.’
- ‘They’re better with their own kind.’
- ‘Of course with one sense gone, another one takes over doesn’t it? She’s sure to develop a wonderful sense of hearing/vision/touch/smell.’
- ‘Of course they’re still able to do wonderful things with their hands aren’t they – there’s lots of workshops where they can make all sorts of things.’
- ‘They can’t hear the music, but they can feel the vibrations.’
- ‘Of course once they get a dog they can go anywhere they like.’
So as parents we all think and wrestle with how we react. Do we ignore? Do we react? Do we roll with it? Do we educate?
I can recall friends rejoicing in their kids’ success at rugby or netball, making the first fifteen or first eleven, graduating with a Masters Degree or a PhD or whatever? To many of us, the ‘Why Me? / Why Us?’ question floats in? How could they relate to the way we as parents of disabled kids measure and celebrate success.
Our son Richard was 23 when with fear and trepidation we taught him how to ride a bike on the beach. Not only did we have to negotiate driftwood, little old ladies and children, he had to stay in the saddle! And did we celebrate this little achievement.
Little but HUGE in our minds. At that very moment I realised that I had found an activity that Richard and I could enjoy, like I never thought possible! Little did I realise that we would eventually be biking on a tandem for 165 kilometres on the Otago Rail Trail. What a success.
I also recall in very early days Richard gravitating from eating mashed bananas and egg and actually eating real toast! I had visions of him eating mashed banana and eggs at twenty one! Another success to celebrate!
Our successes and celebrations take on a totally different meaning with our disabled kids. They may be minute by our mates’ standards but they are huge in our minds and experience. We have learned to enjoy, to celebrate and tell as many of our mates that will listen!
And they have started to listen and celebrate with us.
Try it, persist, and you will enjoy the moments. Celebrate Success!