"I have to post on Hopeful Parents tomorrow," I said to my husband over dinner tonight. "Do you have any ideas for topics?
"Nope," he said, shaking his head. "Now if you had said you need ideas for 'Hopeless Parents,' I've got LOTS."
And that clinched it. I had planned to write about my angst over my son's school placement and the fact that he's in a segregated high school that's focused on life skills. But frankly, I'm tired of feeling hopeless and helpless so I'm going to write about recent events that give me glimmers of hope.
The other night I made Ben a hamburger. "It's as good as McDonald's" he signed. It took me a minute to decode his message and then my heart skipped. For a teenager whose thoughts are generally trapped in a body that can't express them, this was a small miracle. It was also so sweet. Like when we sit down to a special meal and he raises his glass in a cheers to the cook.
Last week he tried to tell me what he wanted to be for Halloween, but things got lost in translation. I knew he was signing a 'Z' and then "animal." I became like a game-show contestant, screaming out every Z-related animal word I could think of. "Zoo?" "Zebra?" Bingo!
I've got to get to the costume store to buy white felt that I can sew onto a black costume for the stripes. It will be a repeat of last year, when he wanted to be a male ladybug, and I had to sew on a million black-felt circles. He's 16, but Halloween is still his favourite holiday.
We recently started a typing program at Holland Bloorview. Occupational therapists there found that traditional touch-typing -- where you memorize the place of each key and which finger should strike it -- doesn't work for kids with fine-motor problems. That's because they have trouble isolating each finger. For children like Ben, a "hunt and peck" approach with one or two fingers -- where he can scan the board for the key he wants and hit it -- is more effective.
Typing is a challenge for Ben and his anxiety often bubbles to the surface, causing him to shut down. But he's slowly realizing that he CAN do some of the games we use as homework, and tonight I was surprised to see a smile light his face when he had success. His favourites are secret messages where you solve a message using a number legend.
Ben is a whiz at computer games and he's able to accomplish missions that are beyond me. Computers are a freedom for Ben, allowing him to show his intelligence in ways he can't communicate conventionally. When he gets stuck, I'm rarely able to help. "Let's wait till Dad gets home tonight," I'll say, thinking, really, I SHOULD be able to do this.
Ben has always been attracted to the unusual. He has a large army of Star Wars action figures, but only the most bizarre creatures may apply. Like Ponda Baba, or Ishi Tib, or Bom Vimdin. He reminded me tonight by going into his iPod and pulling up a picture of Ellors Madak that he had left him, by accident, at our local book store. He tends to send his creatures out on adventures. We are probably the only Canadian family that purchases Star Wars figures from the U.S., because that's the only place we can source the rare creatures Ben wants. As I type this, he's hobbled out of his room a few times to ask if I've ordered 'Snaggletooth' online.
We go on Monday to get Ben's new orthotics. They're putting a lift in them to accommodate the inch he lost in his left leg as a result of his hip surgery earlier this year. Because of this leg-length discrepancy, and because he still can't straighten the operated-on knee, he has a significant limp. "Thump thump, thump thump" can be heard as he lumbers down the hall. But somehow he keeps on trucking.
He's such a loving soul.
Louise Kinross is communications manager at Holland Bloorview Kids Rehabilitation Hospital, where she produces BLOOM, a magazine and blog on parenting kids with disabilities.