Gail Fisher-Taylor

Toronto, Ontario

 

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In January 1985 when my son Kerr (pronounced “Care”) was born, I knew nothing about disability, and certainly had never heard of Augmentative and Alternative Communication (AAC).  At the age of four months Kerr was having over a hundred major seizures daily, and hundreds of more subtle absence seizures. The doctors had no answers.  No idea why, no idea what to do.

Years later we were told Kerr had cerebral palsy and that he was cortically visually impaired. His life was full of appointments, but never in his early years—during the prime time for language development—was there any suggestion he should receive assistance with AAC. I ached to know if Kerr understood what we were saying, if words entered his dreams and thoughts.  I had no idea AAC existed. Trapped in my inexperience, I didn’t know how to help Kerr communicate.  His dad, Burns, and I talked, read and explained to Kerr, trying to keep our hope alive that our words were getting through.  It was hard to know.  With seizures and cortical visual impairment, Kerr’s eyes were impossible to read. 

Our strongest communication was emotional and visceral:  there was no doubt we loved each other deeply. 

When Kerr was about five years old we began to encourage him to blink his eyes to indicate when he agreed with us.  I was holding him one day, and reflecting out loud to a friend, "I think Kerr understands a lot of what we say."  I looked down at him, and there he was—emphatically, rapidly and repeatedly—blinking his response.  How long had he been trying to tell us?

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Another breakthrough occurred a short time later. I had found an adult autobiography about the life story of someone who communicated with AAC. I was reading Kerr a passage about an incident that had occurred when the author was a young girl in an institution long before she had been introduced to AAC. She had been spending all her time lying in a bed, but had developed a friendship—and a system of communication through sounds—with the young woman who was lying next to her. Then one day an orderly walked in and wheeled her friend away, never to be seen again.  

As I read, Kerr began to complain loudly.  At first I didn’t understand, and asked if he needed the washroom, was he hungry or thirsty.  Then, it dawned on me,  “Kerr, are you telling me you’re upset about what we just read?”  He squinted an emphatic blink, and made an enthusiastic, almost deafening, confirming sound.  Now I knew for sure: Kerr was little, but he understood the language and events in this adult book. 

When I found an augmentative communication service at a local treatment centre in Toronto, it had a waiting list over a year long. It was an indescribable relief to learn about AAC and to finally have the hope of some communication assistance. It’s hard to think about what that must have been like for Kerr, having to wait another year, and later, having to wait until he was almost twelve before getting a communication device.   

I wish we had known about AAC when Kerr was little, and I wish that AAC assistance had been immediately available when we found out it existed. I think about all the new opportunities AAC has opened up for Kerr—being able to express his preferences,  make choices, ask us to explain something he doesn’t understand, tell jokes, tease his brother, tell us what hurts, ask questions, share his stories, tell us he loves us,  give presentations, advocate—the list goes on.  I’m immensely grateful for the possibilities.  I’m also aware of Kerr’s frustrations when his communication is ignored or misunderstood, or when someone gets impatient and walks away because he’s in an absence seizure and temporarily unable to respond.  It has been painful when people have underestimated his capabilities, devalued and excluded him.  

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Kerr has deeply affected the lives of all of us who have taken the time to know and appreciate him. He is a gentle, but powerful teacher. From him I have learned about how crucial it is to understand and value all forms of communication, and to ensure that we listen. In hearing Kerr, I understand how essential it is for the well being of all people with disabilities to individually and collectively put equality in motion. That means if something is horribly unfair, wrong or missing, then I have a responsibility to do my part to change it.

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