Something miraculous happened last night.
My son Ben, 16, played a game of Scrabble with me. This was miraculous because Ben has a terrible time focusing, which makes game-playing challenging.
But this time Ben was interested. He even enjoyed moving his letter tiles around to look at word possibilities.
He came up with “ARM.” Then he came up with “ALY” – the name of his cousin, though she uses an “I.” I was ecstatic. Later he produced “ICON.” I don’t know if that was just a lucky guess because he couldn’t speak to explain it.
I had to keep score because Ben can’t add.
We had a lovely time, but I couldn’t help thinking that he would never be able to play at one of our family gatherings, with his cousins.
Just the day before, we celebrated my birthday at my mom’s house. Scrabble is a competitive game in my sister-in-law’s family. Ben’s cousins are brilliant students – one in second-year university already holds prestigious research grants. My SIL rarely lays Scrabble tiles down without forming double words and knows all the obscure ones most people have to look up in the Scrabble dictionary. My other children joined in the game and it moved swiftly around the table, with words like ‘FEDORAS” and “FOLLOWED” filling the board.
Ben sat off on his own in a chair, reading an old picture book that had something to do with acorns and adventures and making the odd sounds he produces because he can’t speak. He couldn’t participate because of the fast pace and complex language.
And somehow I couldn’t help thinking that this Scrabble game represented the value our family had always placed on education and academic learning. And it made me think how I, too, in the past had revered intelligence and somehow felt it was an ability a person earned through hard work. To me it seemed to be a higher or more refined quality, let’s say, than physical beauty or athleticism. In fact, I once had an argument with a university friend who said if she had to choose between beauty and brains, given our culture, she’d choose beauty. To me that showed a certain superficiality and materialism that I didn’t associate with intellect.
But since my son Ben was born I’ve had to acknowledge that my intelligence had little to do with anything I ‘did’ or ‘‘worked hard at’ but was, instead, simply a gift bestowed upon me at birth. I was lucky.
My son was unlucky and will always struggle mightily to learn and to retain information and ideas in his head.
He can’t join in the family games of Scrabble and he won’t enjoy the intellectual growth, social life and freedom of university.
And while I was sitting there watching our family play Scrabble and Ben was babbling to himself and reading or playing with his Star Wars characters – no doubt with intricate storylines playing themselves out in his silent imagination – I couldn’t help remembering that when I was pregnant with him, my SIL had said: “We have to be careful not to compare our children.”
Sometimes I envy my brother’s life. His child-rearing is coming to an end and he’s able to take great satisfaction and comfort in his children’s burgeoning independence.
But rather than wishing that Ben could be more like his cousins, I think my real wish is that my family better knew the inner world of Ben. They don’t know his sign language and they don’t know how to interact with him. I don’t know if they’re able to see past his odd and anxious ways.
I wish I could tell them about how Ben came up with “ARM” and “ALY” for Scrabble and they’d be as excited as I was. I wish I could tell them that when I was prodding Ben to send an e-mail to his dad yesterday, he chose the correct “too” in “I miss you too” and my heart leapt. But we don’t have a common frame of reference anymore. We’re still playing Junior Scrabble and they’ve moved on to post-graduate work.
I assume they feel sorry for us. I think that’s how I would have felt about our situation, before it happened.
Louise Kinross is editor of BLOOM, a magazine and blog on parenting kids with disabilities at Holland Bloorview Kids Rehabilitation Hospital in Toronto.