By Ijeoma Ross
I went into his room and asked what was the matter. But he kept crying. I sat down, gave him a big hug and held him. I asked if something had happened at school. No. On the bus? No. Was it because Daddy was out? No.
He would calm down a bit and then start crying again. He seemed inconsolable. As I was running out of ideas for what could be making him so miserable, I asked about the story I had read that night. It was his little sister’s choice, Curious George and the Puppies.
“Yeah,” he said, dissolving again into tears. “Is it because you want a puppy?” I asked. “Yeah.”
It had taken us half an hour filled with sobbing to find out what we both already knew — that my son, Deane, would love to have a puppy. I consider that a success.
We cherish the times Deane lets us know what he is thinking because it’s not easy for him. Deane, 12, has cerebral palsy (CP) and is non-verbal. His CP, caused by damage to his brain either just before or just after his 10-weeks-early birth, means that he has trouble coordinating his muscles. He uses a wheelchair and needs help with many daily activities. The CP also means that the muscles around his mouth are weak, which limits his ability to form sounds.
He can say a few words: “yeah,” “Daddy,” “Mama” and the first sounds of a number of other words such as “b” for bus or book, “w” for water or watch and “m” for more, milk, music or his grandmother Marsie. But he relies on us to interpret what he means. He also has a few of his own adapted signs for things that are important to him, such as guitar, subway and basketball.
Deane understands what we say to him. He enjoys being with people and has an infectious laugh. He’s fun to be around. But what he is thinking, how he feels or how badly he wants a puppy — are all locked inside, waiting for us to find a way for him to tell us.
All of Deane’s life we have struggled to find different ways for him to communicate. We have been to speech pathologists who did mouth and tongue exercises with him. And a babysitter taught him sign language, but his CP affects his ability to use his hands and fingers.
Early on we used a system of picture symbols that allowed him to point at things or people and was comprised of laminated pictures stuck to pieces of carpet about the size of a standard piece of paper with Velcro backings. We have made up binders with pages of “pics” arranged by subject. His teachers have used the symbols in various ways to allow Deane to participate in class.
But the symbols were labour-intensive. I would spend hours at the computer, searching for the appropriate images, laminating sheets and then cutting little pieces of scratchy Velcro to stick on the back. And it was difficult because we had to anticipate what Deane might want to “talk” about. So we’d print, laminate and Velcro more until we ended up with binders and boxes full of words. It gave new meaning to not being able to find the right word for the situation. Plus, the pictures demanded one-on-one attention. You had to be able to see what Deane was pointing at to know if he was hungry or wanted to watch TV.
But thanks to technology, we’ve been able to move beyond silent pictures. In an age when you can track down a satellite photo of anywhere in the world from your phone or record your barking dog as your ring tone, technology has also been harnessed to help non-verbal people “speak.”
Almost six years ago, as Deane was finishing the equivalent of kindergarten, he got what is known in speech-pathology circles as a VOCA — voice output communication aid. It is basically a touch-screen computer with a synthesized voice. Deane touches “buttons” on the screen and the device, called DynaVox, verbalizes it. This freed us from having to be by Deane’s side in order for him to communicate. I could be making dinner and Deane could say “pizza” or “hungry.” But it wasn’t perfect. Deane could press a button that said “school,” but we still didn’t know what he wanted to say about school. Was he saying he likes school? Or that he had a bad day? That school was tiring? Or he had a substitute today? We didn’t know.
Often we would try to fill in the blanks. He would press “cottage” and we would ask yes or no questions: Do you want to go to the cottage? Do you like the cottage? Do you want to go in the boat at the cottage? Do you like going fast in the boat? Deane would say “yeah” or shake his head for no.
While an improvement over the binders and carpet, the constant game of 20 questions was frustrating for both Deane and us. Deane’s ability to communicate was still limited by us, by the vocabulary we put in the device and by the questions we asked. Maybe Deane was trying to say he never wanted to go to the cottage again. Highly unlikely, but, as inconvenient as that would be for me, I want him to have the ability to say it if that’s how he feels.
We wanted Deane to be able to create his own unique sentences, not be limited to what had been put into his DynaVox in a piecemeal fashion depending on the topics his teachers were working on. At the recommendation of a speech pathologist at the Communication and Writing Aids Service Department of Toronto’s Holland Bloorview Kids Rehabilitation Hospital, Deane’s device got an overhaul.
The department, which works with child-ren with many different levels of communication needs, has followed Deane since he started school. The content was reworked and reorganized, and an index was added that gives Deane access to everything in his device. Although some pages have “carrier phrases” — words that are used frequently and help carry the rest of the sentence, such as “I would like” — there are also pages dedicated to parts of speech, such as pronouns, verbs and adjectives.
While it seems strange to get excited about pages of conjunctions or adverbs, this may very well be the key to unlocking Deane’s communication. With these building blocks, Deane can construct any sentence he wants. This allows him to say, “School is boring” or “Our boat is slow. “
At his school his teachers have been encouraging him to use his DynaVox to greet and chat with his classmates. They have also been working on sentence creation for journal writing and to choose classroom activities.
But it still isn’t ideal. Although Deane’s device’s vocabulary has been greatly expanded, there are still some gaps that limit what he can say. On top of that, because of the DynaVox’s set-up, even a simple sentence often involves pressing seven or eight buttons. And it’s unwieldy too, at seven pounds.
Take all that and combine it with the fact that sometimes Deane doesn’t want to work that hard — he is a 12-year-old boy, after all. He’d rather we guess what he wants so he’ll press a single button and wait for us to fill in the blanks.
But now, when he presses “dog,” we can ask “What about dogs?” and Deane can say, with a smile on his face, “I want a dog.”
Ijeoma Ross and her family are still thinking about getting a dog. Right now, they’re practising with a guinea pig.