Tuning in: Kids with hearing loss

Our son, William, was three when we took him to his first Raptors game 10 years ago. We sat in the rowdy Sprite Zone section, and each time I spoke to William, he turned his head and pulled me close to his right ear. It had never occurred to me before, but I was suddenly certain he had a hearing problem. I called our paediatrician the next morning and shortly after that, an audiologist confirmed that William was severely deaf in his left ear.

You may wonder how we could have missed this. There were no glaring clues. William had always been a happy, rambunctious toddler with an overactive imagination and a great vocabulary (including such words as ridiculous and innovative). I had sometimes noticed that he made slight mispronunciations (d rather than t, or p rather than b), but before information about infant-hearing screening was introduced (which, in Ontario, happened in 2002), it was typical for a unilateral (single ear) hearing loss to go undetected until a child started school. For our family, it was as if we’d been stumbling along in the dark and accidentally hit a light switch. Although I didn’t know it then, this would become a recurring theme.

Still, we counted ourselves lucky. William seemed well able to compensate with the normal hearing in his right ear, and by the beginning of kindergarten, he had been fitted with a bright blue hearing aid. Far from being self-conscious, William concocted a story about being attacked by a shark. He told his classmates he had to be rebuilt with electronics from the inside out. His hearing aid was the proof.

When the aid broke in the middle of grade one, the audiologist retested William’s hearing, this time by blocking sound to his good ear and having him repeat some simple words — farm, truck, hot dog — which were delivered directly to a more advanced hearing aid. The look on William’s face told me everything. Without his right ear, William hadn’t the faintest clue what was being said. While the aid made the sound louder, it did not make it any clearer.

This hit me harder than the initial diagnosis. Until then, we had assumed the aid would strengthen William’s hearing nerve and allow him to hear, but this test suggested otherwise. While the audiologist advised us to keep using it, we were disheartened.

William himself was unfazed, especially at the beginning of grade two, when the school board supplied an electronic FM system in which the teacher wore a small microphone that broadcast what she said into a tiny receiver in William’s good ear. (This equipment will follow William through high school and is entirely funded by the board.) The school also set up an individual education plan to keep all of William’s teachers in the loop about his needs. It mostly consisted of common-sense strategies, such as seating William near the front of the class or having the teacher face him while speaking.

But we wondered if there was more we could do and had our paediatrician refer us to an ear, nose and throat specialist. She did more testing. When she sat us down with nothing new to offer, she suddenly stopped mid-sentence and looked into my husband’s eyes.

“I know why your son is deaf,” she said.

We listened as she quizzed him. “You have two different-coloured eyes,” she said. “Did any of your siblings go prematurely grey? Do any of them have a white forelock of hair?” My husband, Ty, is from a family of 10 kids. Six of them went grey at age 16, and a seventh has a white patch of hair. The doctor explained that these are all symptoms of Waardenburg syndrome, a genetic disorder that can affect both pigment and hearing.

The new diagnosis meant that there was no way to strengthen the hearing nerve in William’s left ear. His impairment was non-progressive, but it was also not correctable. In a way, this simplified things. William no longer needed a hearing aid, and we could now focus on moving forward without worrying that we weren’t doing enough.

But just when things seemed simpler, they became more complicated. By grade six, William was struggling with some subjects at school. We put this down to his being a boy, a dreamer and someone who wasn’t interested in history and science. We gave him extra help at home. But he was also starting to struggle socially. We often had kids over to play, but I noticed that they sometimes treated William like an outsider in his own house.

By grade seven, he was more and more on the fringe. Groups of boys regularly taunted him in class, throwing things at him or dumping his books on the floor. One day, during gym class, his clothes were stuffed in a urinal. He was pushed down the stairs and punched in the head. The verbal bullying was relentless. None of us understood why he’d been singled out, and even though we involved the school, things didn’t get better.

William is naturally a happy and kind person, and the isolation made him sad and angry. He grew his curly hair past his shoulders — perhaps to make him look as different on the outside as he felt on the inside. In the spring, he cut it all off, raising more than $2,000 for cancer research.

Then came another one of those light-switch moments. Toward the end of William’s grade seven year, I had a hallway conversation with one of his teachers. She told me it was common for kids with hearing loss to struggle with impulsiveness and a lack of focus, and to have difficulty following written directions. It sounded like she was reading a description of William. (In fact, kids with hearing loss present many of the same behavioural characteristics as those seen in children who have attention deficit hyperactivity disorder.)

What came next hit me the hardest: The teacher said that kids who are hard of hearing often miss visual cues regarding personal space. They might, for example, stand too close to people in order to follow a conversation. This is OK when you’re five or six, but less so when you’re 12 or 13 and your peers may find the proximity invasive.

For the first time since that Raptors game 10 years earlier, I was angry. Why was I hearing these things for the first time? If someone had shared them with us when William was younger, perhaps we could have helped him find ways to cope.

William’s sense of isolation peaked at the beginning of grade eight. He started wearing all-black clothes, which earned him an “emo” label and alienated him even more. Before September was out, I received a call from the school telling me that William had told a classmate he wished he were dead. In my heart of hearts, I didn’t believe that William would seriously contemplate suicide. Nevertheless, it was clearly a cry for help and my husband and I knew we had to do something.

We quickly involved a number of people — counsellors to help with the emotional struggles, teachers and tutors to help with the trickier subjects, and doctors to see whether any new technology had emerged over the past few years that could help him (it hadn’t). Throughout grade eight, William met with a hearing teacher once a week to learn how to use his FM system more consistently and also to better advocate for himself.

In retrospect, the breakthrough moments have been accidental: a Raptors game, a broken hearing aid, a chance glance into my husband’s eyes, an impromptu hallway conversation. I wish I’d had a better road map, and wonder why the information I stumbled across isn’t made available to all parents of kids with hearing impairment from first detection. Or, at least, why it wasn’t made available to me.

William himself deserves a lot of credit. He’s still imaginative and ultimately resilient. He’s passionate about music, plays instruments (guitar, drums and bass clarinet) and sings. In the past year, he has learned to surf, earned his scuba-diving licence and black belt in karate, toured with a regional school band, and worked part-time taking care of a little boy after school. All of this gives him a picture of himself that’s quite different from the one his classmates hold up.

His quote in the yearbook, which he created single-handedly for his graduating grade eight class, was: “Never forget that only dead fish swim with the stream.”

*Sadie Elliot is a pseudonym. All names in this story have been changed.