Friday, May 29, 2009

'He gets to do whatever he wants'

I want to get a copy of Karl Taro Greenfeld’s Boy Alone – a memoir about growing up with his brother Noah, who had severe autism, during the 1960s.

But I’m also hesitant. It’s obvious from reviews that it’s a frank and painful account of how it felt to be the typical sibling in a family that revolved around one child’s challenging behaviours and inability to communicate.

“I can feel the room tilting toward you whenever you walk in,” he writes of Noah, “all of the attention and parental love drains into you, never to come back out.”

I know there are times my kids feel that way about my son Ben, the oldest at 15, but the youngest of my four developmentally and in stature. Ben has a rare genetic condition. He doesn’t speak, is weak and has pain in his joints, has hearing loss and uses sign language. He’s the size of a five-year-old.

He can’t carry the groceries up the 30 stairs to our house or do other things we expect of his siblings. He wears hearing aids but struggles to hear with background noise, so I’m constantly telling the other kids to be quiet so Ben can understand me. Or to hold their thought while I try to decipher what Ben is signing to me. Or to walk the dog, even though it’s Ben’s dog, but he can’t walk him. Or to pull Ben in the wagon, because his knees hurt.

“But my knees hurt too Mom!”

“Not like Ben’s do I’m afraid.”

Sometimes they’ll say things like: “He gets to do whatever he wants!” And it’s hard to explain that in reality, there are so many things they can do that he can’t: from riding a bike, to swimming and playing sports, or calling a friend on the phone. To even just having a friend. Ben doesn’t have any friends.

It’s hard for kids to understand that perhaps you go easier on their sibling because that child is already up against so much. Even though you know rationally that all kids – with or without disabilities – need responsibility and limits and expectations.

I often feel like my other kids have a depth and sensitivity to them precisely because Ben is their brother.

But I also worry about them resenting him and how our family has been defined by his needs. As Karl writes in Boy Alone in reference to his brother Noah: “I am learning that I can never compete with you…I will lose every race for our parents’ time and attention.”

Two brothers, battling autism