Yesterday our boys went go-kart racing. I had hoped that Ben could drive, but they said the double cars (above) had to have an adult driving. In the single cars, which kids can drive, Ben couldn't reach the pedals.
Ben had a blast anyway, and I wondered afterward if it would have made any difference if he had driven himself.
But I wanted him to.
Recently I've found myself focusing on things Ben will never do.
Ben came home with a certificate from camp that said he 'swam' to the island. This sounded huge and it was. He wore a life jacket and a boat pulled him the whole way. Apparently he was in heaven. But I couldn't help thinking he would never know the feeling of stroking through the water independently.
The other night I played ping pong with my younger son and I tried to think of how we could pull a bench up to the table so that Ben wouldn't be at a height disadvantage for playing. But I couldn't come up with a workable solution. Then this same son and I were playing tennis under the hot sun and the thought "Ben will never be able to hold the raquet" popped into my mind.
Soon I was buying something at the corner store and thought: "He'll never be able to figure out the change in his head. How will that make him feel?"
Perhaps none of these things matter at the end of the day and they don't necessarily equate with a good life.
You don't need special abilities to breathe in the sweet scent of fresh-cut grass, or to feel your hair blown back in the wind of a speed boat. Just what does make a life good?
Something I've been thinking a lot about lately is how little control we have over our children's lives. We like to think that through therapy and doing all the right things we can improve the "outcomes" for our kids.
The idea that 'anything is possible' if you work hard is popular in our culture. There's the Calvinist notion that people 'get what they deserve.' All of these ideas strike me as incredibly simplistic and untrue now -- whether we're talking about people with or without disabilities.
The fact of the matter is that there are loads of things I will NEVER be able to do, no matter how hard I try. For example, I can never be a ballerina. When I was young, the National Ballet said I didn't have the "right body." I will never be a runner again because my knees are shot. I will never have real hair on my head because I have an auto-immune disorder that prevents it from growing.
Next week I am interviewing Dr. David Burns, a professor of psychiatry at the Stanford University School of Medicine and guru of cognitive behaviour therapy, and one of his colleagues, Dr. Jacob Towery. Dr. Burns has written a number of bestsellers about how the way we think determines the way we feel.
When people are depressed or anxious, according to CBT, they always have distorted thoughts flooding their minds -- often that they're not even aware of. If they can be taught to identify these distortions and replace these irrational thoughts with more realistic ones, they are much happier.
So instead of thinking "Ben will never drive a go-kart" I could think "Ben got to experience the go-kart and he had a blast, and it may not have made any difference to him whether he was the passenger or the driver."
One of the common cognitive distortions in CBT is the mental filter -- when you filter out anything good and focus only on the negative. I know this is what I've been doing in thinking about what Ben 'can't' do. I'm hopeful that Dr. Burns and Dr. Towery will have some useful advice for parents like me.
One of the things I like about CBT is that it identifies many self-defeating attitudes that are prevalent in our culture -- for example, that work and achievement determine your worth.
Stay tuned! Louise