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Thread: Then and Now, Remembering When Nick was Small - a new blog post

  1. #1
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    Default Then and Now, Remembering When Nick was Small - a new blog post

    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 Queen of all community connectors, Louise Kinross, chief of communications for the hospital and editor of "Bloom", a parent magazine about all things disability. We hugged and Louise began to show me around. 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.

    For the original post with live links, visit
    Donna, Mum to Natalie (22), ablebodied, kind and beautiful and Nicholas(26), severe CP, non-verbal, tube fed, multiple surgeries, chronic pain, happy kid except when the Liverpool football club or the Ottawa Senators Hockey Team are losing!
    Check out my blog:

  2. #2
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((Donna & Nicholas))))))

    How exciting! I will look forward to your reports on how Dr. Chau's technology works for Nick.

    Possibilities ~ things are changing rapidly, and more possibilities are created every day. I don't believe in coincidence. You were meant to speak at Holland Bloorview just at that time so that you could meet Dr. Chau.

    Seems like a pretty neat birthday present too!

    Love & Light,

    Mom to Jon, 49, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003. Our Angel Jon received his wings April 2019. Now, they watch over Jim and me.

  3. #3
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    Very exciting!! I really hope this turns into a positive experience. I feel that HOPE is such a gift. I chereish the fact that we have so much HOPE for Kathleen and her future. I feel very lucky to have this "gift" there are some I've known who don't.
    Mary Grace

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