One Family’s Journey

Tarron’s Adventures in the Wild

By Lynnea Stacey, British Columbia H&V

baby Tarron

The Wild Staceys: that's us. It came from the Tarron’sfavourite TV show, The Wild Kratts. He wanted to have his whole family be Wild Staceys because it meant we would always be together--we were a team. It began to stick when he told us "We are The Wild Staceys…and we will do wonderful things." Well it made my heart swell, this wonderful boy... who loves so deeply, and feels so strongly.

It hasn't always been easy, in fact it rarely has! Life could be scary and confusing.

I brought Tarron, my fourth baby, home from the hospital. Born six years after two daughters and a son, he was the missing piece to our family. By the time he was four months old, I knew something was up with his hearing. Doctors wouldn't listen, health nurses told me how lucky I was. "Oh he is a sound sleeper..." or “he has three older siblings; he has learned to ignore the sounds..." I noticed, too, that he seemed afraid of the dark. If a light was on, he was fine. Turn out the lights—panic.

I had to push for testing but it was finally scheduled in the nearest city to our wee town in northeastern British Columbia, Fort St John. Unfortunately, the sound booth there is set up for adults, not babies, and we got no information. Instead, we had to wait five months before Tarron was scheduled for further testing—a sedated auditory brain response (ABR) and an MRI, at the StolleryChildren's Hospital in Edmonton, Alberta. Edmonton is a nine hour drive for us. We expected to hear the news that he needed tubes for fluid in his ears like other families had shared with us.

We couldn’t have been more shocked when a man came into our waiting room and said in no uncertain terms, “Your son is profoundly deaf. Both ears.Any questions?” We were stunned. What? Our son? How can that be? He then told us to wait in another room where an ENT would see us. This doctor explained to us about Tarron’s hearing loss, what he could hear, and told us that he would be a candidate for acochlear implant. “Oh and by the way.... You will now have to travel to Vancouver and have all these tests redone since you are from British Columbia and we can’t cross provincial health borders. Any questions? No? Have a nice trip home...”

I remember crying in our truck.

I remember my husband staring at road, not talking.

I remember our cell phones ringing, and shutting them off because we couldn’t say it out loud to anyone.

I remember seeing my beautiful boy smile at me.

I remember talking to him and then stopping because I now knew he couldn’t hear my voice.

I remember crying more.

That night we sat in our hotel room and tried to come to terms with all this news. I had to learn to let go of the child I thought I had had and embrace the one we did have. We had to change our path...and I became fiercely protective. I live in a very small town and gossip and rumours can rule. Being different is usually notagood thing here. Now Tarron was the only deaf child in our community.

We finally turned our phones on and talked to our families. We asked them not to say anything just yet to other people. It was only after we had done our research and felt confident with the information that we began to tell our friends; the news spread like wildfire.

Adventures in Sign Language

During the assessment and learning period following the news, we learned to sign and dealt with hearing aids. Some family learned sign along with us and others relied on us to communicate with Tarron – we made each person’s choice work. Although I mourned the loss of baby chatter and hearing him say “mama” for the first time, I learned that a baby signing is pretty much the sweetest thing you have ever seen.

I would be trying out some of my new sign words while shopping in our tiny grocery store when people would come up and start finger spelling to Tarron. He would look at them blankly, and they would say “Oh, he doesn’t sign yet?” “Well, yes, he is learning to sign but at not even a year old he hasn’t mastered spelling!”

One day when I was shopping a lady came up to me to tell me how beautiful my baby was, and to ask what was wrong with him. “Oh nothing is wrong with him, he is just deaf,” I replied. “Oh I figured it was something, God made him extra beautiful to make up for his ears.” Well I didn’t quite know how to take that. (Thank you? I think.)

Adventures with Cochlear Implants

We have a Deaf friend who is one hundred percent against cochlear implants. He came to our house so furious with us for even considering such athing. He told us all kinds of horror stories his fellow Deaf friends had told him. This was one of the hardest parts…the doubt. Is this the right thing for Tarron? We were lucky to have been involved with BC Family Hearing Centre in Vancouver: they were our life link at this point, supporting us through our learning and decision making. Shortly after his first birthday, we decided that Tarron could receive a cochlear implant.

After Tarron’s surgery when he was 21-months-old, we started on the road of Tarron’s habilitation. We learned about his equipment, attended speech therapy in Fort St John and online, and traveled to BC Family Hearing Centre and BC Children’s hospital in Vancouver.

We had a box of spare parts that we had to pay to have replaced often because Tarron loved to chew cables and coils, throw the implant during tantrums or simply not notice when he lost it. We had so many heart-stopping moments when we realized he was not wearing his implant. Back-tracking and hunting…once on a snow covered hill, many times in our house and vehicle.Then came the phase of taking it off and purposefully “losing it.” We even found it attached to the side of the stove after he discovered the magnet would jump to the metal if he got close enough. All this was done with a nonverbal kid who wouldn’t tell you where he had left it. He just shrugged “I don’t know!” We used clips and cables and cords and invented some of our own. We had friends and family trained to check if the implant was on, and it did eventually get better.

Four years after his initial surgery, we were told at long last that Tarron could get a second cochlear implant. And so a whole new series of visits to Vancouver began. To this day, we travel to Vancouver twice a year. We now love going there, and we do our best to fit in some fun between the mapping and check-ups – sushi and Granville Island Tea are highlights!

Adventures at School

When he was ready to start Kindergarten at age six, we decided to move to the largest city in northern British Columbia, Prince George, to give Tarron the best start in school that we could. Here, he would have access to the deaf community and other kids who had similar equipment as his. This was huge because, unless we were in Vancouver, Tarron never saw another child with a hearing device; he was alone in our town.

After a year, however, we returned to our hometown for Tarron’s Grade 1. It was a great experience to live in Prince George but my daughter wanted to graduate with her old classmates, and my husband was still working there; we were traveling back and forth four hours to see each other. Plus, we still owned our home there and were renting in Prince George. It was a difficult decision. We remain connected with our Prince George community, attending many of the Deaf society events.

Tarron now sees his Teacher of the deaf and hard of hearing every other Friday, and he has a part-time Educational Assistant. I also work at his school and can volunteer in his class. Nevertheless, he can face some challenges as the only deaf child in a small school.

For example, one day when I was in his classroom, Tarron’s batteries died and we didn’t have his spares. The other kids crowded round, yelling “Tarron can you hear me?? Tarron!!”They also tried some sign they’d learned. They ended up shouting and signing“SIT DOWN!” Tarron looked like he was going to burst into tears. After calming both of us down outside the classroom, we decided to leave.

The plus side of this experience was that Tarron’s deaf/hh teacher started a classroom program to show his peers what it might be like to be deaf. She took small groups of kids out of the classroom and had one child at a time wear sound-canceling headphones. She had them do aspelling test and, after they were done, she would tell the kids a joke. Then the hearing kids would laugh. After she would ask the child in headphones what it felt like, and they all said they thought she was talking about them and laughing. It was a valuable lesson for them to learn what Tarron’s life was like.

Currently, Tarron is thriving halfway through Grade 2. Creative writing is his favorite subject. He speaks very well and is self-sufficient, looking after his own equipment and batteries. He is still reliant on the “old ear,” the one that was first implanted, but says “baby ear” sounds almost exactly the same now. I’ve persisted with signing to him throughout all of these transitions. After a downturn in his signing after school started, he’s expressing more interest in signing again, so this remains a future goal.

Throughout all of these adventures, he remains our wild boy – you’ll find him playing hockey, soccer, or running with his big brother and dad. He wants to be a great hunter “as soon as I am as big as they are.” And that is happening way too fast for me.