Saturday 14 April 2012

Then and Now, Remembering When Nick Was Small

Last week I had the pleasure of speaking to parents at the Holland Bloorview Kids' Rehabilitation Hospital in Toronto. The building is new with a welcoming, light and homey feel to it - certainly very different from the old Hugh MacMillan Rehab Centre that used to stand in its place. Nicholas and I went to Toronto when he was three and four years old. There, we had his first psychology assessment, seating clinics (we received his first wheelchair) and inpatient stays for gastro consultations that came through Sick Kids' Hospital. I walked in to the new centre and was met immediately by a delighted squeal of recognition - it was the doyenne of all community connectors, Louise Kinross, chief of communications for the hospital and editor of "Bloom", a parent magazine about all things disability. Louise and I had been emailing each other for months and we felt like fast friends, but we'd never met in person. We hugged and began to tour me around the facility. My eyes fell upon a bench, placed in front of a window to allow parents to view their children having aqua therapy in the pool below. All the parents were leaning forward, pointing and chatting quietly. I listened for a moment as they compared challenges and triumphs. I was flooded with memories.

It's been a while since we did therapy with Nicholas. We haven't given up hope for change in his abilities, but we accept who he is and we no longer feel the urgency of that desperate love of parents for their young children - children who hold so much potential for improvement. We are in the middle age of our parenting. But seeing the other families and hearing their stories at my talk, I wondered whether we should be more hopeful for change in Nicholas. I looked at the weary faces of parents, young and old and I thought about our life. There, at Holland Bloorview, there was so much help - so much hope for change. Had I given up on all that?

The morning that I packed and prepared for my drive back to Ottawa, Louise met me and said, "Before you go, I want you to meet Dr. Tom Chau. He's the Director of Research here. Have you heard of him?" I answered that yes, I had heard of his amazing work in using movement and music to facilitate communication in children with very severe impairments. Louise guided me up to the fourth floor and knocked gently on Dr. Chau's office door. A good looking, slim and well-dressed Asian man introduced himself and Louise left us to chat about communication technology. The doctor explained about some of his new inventions and asked about Nicholas. I hesitated a little - did I want to enter this territory of hope, therapy and worry again? I breathed and began to tell Nick's communication story of computer switches, auditory scanning, coded verbal and non-verbal messaging that is his way of talking. Dr. Chau nodded and I made a decision. "Can you help Nicholas?" I asked. "Of course, he is 23 years old and you work with children", I added perhaps too quickly. "Of course we can help Nicholas", the doctor said. We work with all ages when we are researching new technologies." Then he showed me a video of a young man, very like Nicholas, who used his voice to hum in order to prompt the computer to speak his chosen words. A kind of necklace called "The Hummer" sensed the tonal vocalizations of the young man and turned these sounds into computer messages. My eyes widened and I said quietly, "Could Nick wear that and use it in bed and in his wheelchair?" I asked. "Yes, sure", Dr. Chau replied. I began to feel the old excitement of potential and positive change. "I'll write to you and we are definitely interested. Thank you so much!"

I went to Holland Bloorview to tell our family story. People came to hear me and to learn. But it was me who learned from the families there - I tasted hope and remembered.


Anonymous said...

When my cerebral palsy began to progress, causing greater paralysis, only one thing came to mind: "I grew up at Holland Bloorview --we do not yield!"


BLOOM - Parenting Kids With Disabilities said...

You WOWED everyone at your talk and it was an honour to have you.

I don't have the video yet but am excited about being able to share your ideas and experiences more widely.

I am grateful I'm at the stage where I am always looking for ways to better Ben's life -- but without the desperation of the early years, when what I really hoped for was a 'cure.' I have seen the hummer and can't wait to hear if it's a good fit for Nicholas.

By the way -- I LOVE the new web design! Did someone do it for you? xo