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Wenting Li

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When my youngest son was small, I used to joke darkly that he would grow up to be a mime. He was so quiet and strangely adept at gestural, theatrical communication with people. Thinking about this now gives me a pang.

Griffin was always quieter than my first two children. Countless people told me that it was because he was youngest: His big brothers got so much airtime that the baby couldn’t possibly get a word in edgewise. There was certainly truth to this, as with three boys and an outspoken dad in the house, our family can be overwhelming. Griffin was so silent and easygoing that it didn’t seem like a problem; at times, I was grateful for his quiet peacefulness.

Griffin grew into a sweet, mop-headed boy who couldn’t even say his own name (what were we thinking choosing that combination of impossible sounds?). Before he turned 3, our pediatrician advised us to put him on a waiting list for speech services, just in case.

Toronto’s Preschool Speech and Language program had helped our middle son overcome some minor pronunciation problems and we knew many kids who had had similar experiences. We assumed that Griffin would quickly be set on the right path.

Instead, we are helping our nine-year-old cope with Childhood Apraxia of Speech (CAS). CAS is a neurological motor speech disorder that makes it difficult for a child’s brain to tell the mouth how to plan the right sounds for intelligible speech. Imagine learning to walk and having to memorize each physical movement individually; now picture doing that work for every new physical skill. Learning words and stringing them together properly is that labour-intensive for children such as Griffin. Sometimes, words that he had seemed to acquire through endless repetition and tactile therapy still don’t stick.

According to Speech-Language & Audiology Canada, fewer than 1 per cent of children have CAS. The hope is that these children will eventually speak as others do, but the road to get there is long. Speech therapy and daily practice are needed to acquire the sounds most kids learn by osmosis.

The speech-language pathologists we met were enthusiastic and kind. I still marvel at their patience. Griffin was barely able to sit still, much less follow detailed instructions about making sounds. When things got hard, he would just shift his attention to stare out the window at a squirrel in a tree, effectively leaving the room and giving his brain a break.

As the gravity of his case became clearer in those early years, several beautiful souls who worked with him broke rules to allow him more publicly funded sessions than children are typically allowed. He moved from one speech-language pathologist to another, each step taking him toward the next person who knew a bit more about CAS, and ultimately to the best person possible at the Speech and Stuttering Institute. Deb is the queen of motor speech disorders.

One bedtime, when he was probably 3 or 4, I told him I loved him. “Me, too,” Griffin quietly replied. I hadn’t realized he had mastered that tiny phrase and it brought me to tears. Later, in kindergarten, he gave me a page containing “I LOV YOU,” misspelled in wobbly printing. He wrote those words before he could say them.

Griffin’s grit and determination as he strives each day just to make himself understood is both surprising and gratifying. His brothers have been his greatest supporters. In kindergarten, there were plenty of kids who struggled in similar ways, but as the years go by, the gap widens. Griffin is asked to repeat himself so many times that he often says things several times even before he’s even asked. He also simplifies his word choices to be understood. His classmates have been mostly accepting of Griffin’s differences. They seem to take what he says in stride and generally gloss over whatever isn’t clear. Incredibly, Griffin’s best friend, Imran, has always been able to translate his words.

There are countless heartbreaking moments for me: meeting toddlers whose speech is clearer than Griffin’s; watching someone’s face as they try to figure out what he’s saying, or, worst of all, trying to answer Griffin when he asks why it is so hard for people to understand him. We’ve had our share of insensitive questions. Griffin has been asked if he speaks a different language, and has been picked on and unable to report the child because he couldn’t say his name. But thankfully, he perseveres. Only sometimes does he ask why he has to work so hard; and only sometimes does he get so frustrated that he says it doesn’t matter if people don’t understand him.

Life is different for him. Maybe every parent feels a version of that. Acknowledging the anxiety, fear and deep grief that his situation causes me is hard. It’s much easier to be cheerful and to focus on how things will work out in the long run. Other parents may have thought it was ridiculous when I cried the first time Griffin led his karate class in repeating their pledge, but it was an unspeakable joy that he was confident enough to do it, and that the other kids treated it like it was any other day.

As Griffin grows up, I fear the casual cruelty and harsh words of older children and teens. I worry that his sunny disposition will be dimmed by encountering real bullies rather than childish curiosity. I agonize about not being there to help as he leaves childhood and becomes more independent. But I tell myself that there are worse struggles out there, that everyone has something to be teased or bullied about, and that those tough moments create strength and an ability to cope with life’s challenges.

One day, my son will be able to share every amazing idea he has and tell his stories at full speed. In the meantime, we can make it easier for children such as Griffin by listening harder.

Tanya Fenkell lives in Toronto.

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