Cerebral Palsy: A Parent’s Perspective
Recently I was asked: so what’s the special role of a Dad in the life of a child with CP? What’s the role of a Dad in any child’s life? It’s all about providing, safeguarding, teaching, hugging tightly and encouraging. And it’s also about encouraging from the sidelines and standing back when your child stumbles. It involves making room and letting go.
Letting go is pretty tricky, especially when the child faces unusual obstacles and a little help would help so much. Do you want a hand with that sleeve? You want me to cut that sandwich? How about I proofread that essay? I know you can do that transfer, but it’s so much faster if I just… and so on. When our daughter was little I would swing her in and out of cars, into her wheelchair, and into bed. When she got older, I could still lift her in and out of cars. It was just easier; faster and easier. Well yes, maybe easier, but maybe not so smart. Not so smart for my back in any case, but also not smart as a way to affirm the young woman that she had become. I had to learn, and am still learning, to adapt to her rhythms and her timing; learning to let her lead.
It was the same with schooling — I wanted to wade in, shape everybody up, and have them really see this soft-spoken plucky girl instead of the wheelchair. I wanted to guard her from offhand cruelty, from casual inattention, and from well meant but patronizing gestures. At the same time, I wanted to constrain her to act “normal”, talk “normal”, and to disappear into the crowd. Well I couldn’t accomplish any of those. In the end I came to acknowledge that she was pretty good herself at dealing with all the indignities. She was pretty darn good at ‘skippering’ to her goals and awfully darn good at reading people along the way.
So now I sit at the table in her cheery, bright apartment, while one of the attendants she has hired is bustling about. My daughter gives me instructions. “Sometime, if you want, Dad, I could use…”, and pretty soon I’m fixing a loose cupboard door, or maybe I’m just digging some bulbs into her patio border, happy that I’m still in the game. I can still fix things at least a little bit. Then the thought crosses my mind that maybe she figures she’s the one helping me by giving me some tasks. I straighten up and scratch my head for a moment, trying to get used to that idea, and then I get on with the digging.
This article was published originally in “A Guide to Cerebral Palsy: Your Pathway to Understanding,” a guidebook produced by the Cerebral Palsy Association on BC in 2006.