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
Posts
5 comments:
I took an online course through a group in northern California called Awakening Joy. It was taught by some of the "biggest" minds in meditation and eastern thought in the U.S. I remember reading in my notes that trauma and negative tracks are the "normal" ones in the brain and that it is only through practice (meditation, positive thinking, singing, etc.) that we can literally train the brain to use different emotional pathways. I didn't really describe that as well as I should, but I think our minds veer more toward the negative as a primitive survival reflex. Mindfulness meditation and the practice help neural pathways to change --
I use to do that when Cody was younger. Because Cody is blind, I would think about all of the things that he would never see and wonder how I was going to teach him when people are 80% visual learners. I think it's just part of a mourning process that parents go through.
For what it's worth, you have inspired me. I love the way you divert your thinking into focusing on the positive.
Hi Louise,
I'm all for positive thinking, as it is imperative that parents and children with disabilities learn to see "the glass half full." I'll also tell anyone who is willing to listen, "I must accept what I cannot do, while finding a way to accomplish those things which truly matter."
Maybe, in a later post, you could interview these some professionals to discuss the griefing process for both parents and children?
Matt Kamaratakis
Yes this post reminds me of Lousie Hays book I bet you may have read it she was pretty popular and on a Oprah a few times discussing this I really found her message that your thoughts are your reality helpful to me. Keep up the positive thinking Louise. Sounds to me like Ben has a life I hope Ashley has when she is his age friends and family all around and fun experiences which are doing a great job providing him with and it sounds like he just had the most fabulous summer going.
I was just going to say, too, that I hope my daughter can have the kind of summers you have shared Ben having! I think that the grieving never quite goes away, and that there will be times (probably around transitions?) when these moments will flare. I have felt ambushed out of the blue, just packing my other kids' school lunches- "She'll never be able to eat a peanut butter sandwich! " or when my youngest son made his First Communion, and all the little girls processed past me in their white dresses- could not. stop. crying, thru the entire ceremony! A friend just shared that she was at her niece's wedding with her disabled child, and it suddenly hit her that she would never experience this... but she had recognized it as one of those "ambush moments", like when all the other kids her girl's age got their drivers licenses, or went to prom... Not sure we can head these thoughts off, but the positive attitude (most of the time) and the glass-half-full have got to be a help.
Post a Comment