I've been following the reviews of Andrew Solomon's new book, Far From the Tree: Parents, Children and the Search for Identity, pretty carefully. Here's one in the New York Times and another one in Slate.
Solomon writes about the families who care for kids with severe disabilities or with kids who are outliers in some way — kids who are the product of rape, kids who are gay, autistic kids, children with schizophrenia. He expected to find miserable people overwhelmed by the burden of caretaking. Instead, he found parents whose love seemed to have no bounds. The parents said that they would ease their child's suffering if they could, but they believe that the experience of raising a special kid made them better people.
I travel in those circles, because I have a son with a disability. I know those parents very well. Let me add some qualifications to Solomon's story.
There are indeed some amazing, beautiful people who love their severely disabled kids.
Every Wednesday, I take Ian to a special swim class at the Y. Ian is mixed in with kids who are rarely seen by the general public. There's one man-boy who is wheeled into the Y by his nurse and his mother. The man-boy must be in his twenties, because his hair is receding and his back is hairy, but it's hard to determine his actual age, because his growth has been stunted and he can't speak. He's lowered into the water and a volunteer attaches a floatation device to his waist. Then the volunteer pushes him back and forth across the pool for an hour. When the swim period is over, and the boy is hoisted out of the pool, his mother and his nurse coo over him. Their faces light up when they see him. Their love for this boy, which is so real and genuine, makes me tear up every time.
During that 45 minute swim session, I am surrounded by incredible people. They come from diverse backgrounds and I probably would never have come across them, if I didn't have a kid who was odd. In addition to the parents, there's the woman who runs the program. Coach Linda is tall and gangly. With her short cropped hair and track pants, she reminds me of the good twin of Sue Sylvester from Glee. She knows all the kids by name and shouts encouragement to them from edge of the pool.
Having a kid with a disability puts you on the outskirts of society. You are not part of the normal suburban parent community. The PTA plans events that your kid can't attend. Your kid isn't a part of the after-school sports scene or scouts or religious classes. You don't meet other parents at the bus stop, because your kid goes on the special yellow bus. I think that that marginalization makes you appreciate the few people that cross your path even more.
Other parents get caught up in competitive parenting circles. They actually care if their kid gets an A or an A- on a test. Parents of these special kids just want their kids to be happy.
Because Ian falls on the edge of disability, I see some not-so-beautiful special parents, too. This group desperately wants their kids to cross over to normal society. That desperation brings out some rather bad behavior.
And then there are the parents who get stalled out on the grieving stage and haven't made it to the acceptance stage. There's one dad that I talk to periodically who can't stop imagining what his child would be like if he didn't have autism. He corners me at birthday parties to tell me his woes.
I like to think that Steve and I are better people as a result of raising Ian. I'm not sure if that's true. I have a very flawed personality. But this experience has exposed me to the best of human nature and for that, I am grateful.
