Tag Archives: 18q-

Ode to Bennett on Rare Disease Day 2017

The last day of February every year is Rare Disease Day. Though technically Bennett doesn’t have a “disease,” his genetic condition, Chromosome 18 Deletion Syndrome, is very rare and impacts him and our family like a chronic disease, one we will live with forever that can’t ever be cured, only managed.

The Boy Band called -- they want Bennett to join.

The Boy Band called — they want Bennett to join.

We’re fortunate he doesn’t have any of the health complications that are associated with the condition, from congenital heart disease to growth hormone deficiency. But he does have delayed development and cognitive impairment along with an autism diagnosis.

Still, in spite of these challenges, this is a kid who loves life when things are going his way. He’ll hike up a mountain without complaint, swim till he’s water-logged and delight in travels that take him to jungles, desserts and world-famous zoos.

Bennett has taught us so much about what it means to love unconditionally, and to see the ability in disability. We’re proud of his many accomplishments over the years, and we know he’ll continue to surprise us and make us laugh along the way. They say the struggle ends when gratitude begins. So, instead of getting bogged down in the challenges involved in raising a child with special needs, I try and see Bennett’s differences in a positive way. This poem is a good start:

Here’s to the the kids who are different,

The kids who don’t always get A’s,

The kids who have ears twice the size of their peers,

And noses that go on for days …

Here’s to the kids who are different,

The kids they call crazy or dumb,

The kids who don’t fit, with the guts and the grit,

Who dance to a different drum …

Here’s to the kids who are different,

The kids with the mischievous streak,

For when they have grown, as history’s shown,

It’s their difference that makes them unique.

— Digby Chelsea Wolfe

Here’s to you, Bennett. You’re a rare kid who dances to a different beat. And we’re happy to keep dancing with you. xoxo

With Bennett, the journey is as exciting as the destination.

With Bennett, the journey is as exciting as the destination.

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Bennett = Dog Singer? Things I learned at the Chromosome 18 conference

A couple months after Bennett’s Chromosome 18q- diagnosis three years ago, Blake, Bennett and  I travelled to San Antonio, Texas for the annual Chromosome 18 Registry & Research Society conference. We wanted to learn more about his condition and meet other families going through the same thing. But at the time — partly because his diagnosis was so new, and partly because his symptoms were somewhat different from other 18q- kids (he has mostly developmental delays that express more like autism, than health problems or visible disabilities) — we left that conference feeling unmoored. Like we didn’t quite fit in with the chromosome crowd or the autism people (Bennett’s autism diagnosis preceded his genetic diagnosis by six months).

Bennett's love affair with horses continues during a Chromosome 18 field trip to the National Ability Centre in Park City, Utah.

Bennett’s love affair with horses continues during a Chromosome 18 field trip to the National Ability Centre in Park City, Utah.

But we decided to try again. So we drove to Salt Lake City in July to attend this year’s Chromosome 18 conference. We brought both Bennett and Avery with us this time, thinking Avery, now 10, would get a lot out of it and expand her knowledge and understanding of Bennett, and empathy toward him and other children and adults with extraordinary needs and challenges. This time, it felt right.

Bennett and other children with Chromosome 18 conditions try out a range of adapted bicycles on a field trip to the National Ability Centre.

Bennett and other children with Chromosome 18 conditions try out a range of adapted bicycles on a field trip to the National Ability Centre in Park City, Utah.

I sought out families with 18q- kids similar in age to Bennett. I asked questions about behavioural issues, challenges, schooling and medications. I attended workshops on autism in children (it’s quite common in 18q- kids), and anxiety and depression (also common). And I listened and really opened my eyes when photographer Rick Guidotti gave his presentation, Positive Exposure, on capturing the beauty in people with genetic differences. I saw this same presentation three years ago, but I didn’t really see.

Bennett gets a hug from Elsa during the dance after the Chromosome 18 Registry & Research Society conference gala dinner in Salt Lake City.

Bennett gets a hug from Elsa at the Chromosome 18 Registry & Research Society conference gala dinner in Salt Lake City.

But Avery saw it immediately — that’s the beauty in children. She embraced the conference with her whole heart, making friends with other siblings and helping affected children, whether riding bikes with them on a field trip to the National Ability Centre in Park City, pushing a new friend on a swing, or giving hugs. There was a “sibling track” at the conference that explained Genetics 101 to brothers and sisters of affected kids, and let them talk about how having a special needs sibling impacted them. I realized Avery doesn’t see Bennett as having special needs; she sees him as her brother and loves him unconditionally.

Avery is Bennett's sister, mentor, protector and friend. It's wonderful to see the kind, loving, empathetic and beautiful person she is becoming.

Avery is Bennett’s sister, mentor, protector and friend. It’s wonderful to see the kind, loving, empathetic and beautiful person she is becoming.

During one session the siblings were asked to imagine their affected sister or brother as having a superpower — what would that superpower be? They drew pictures of the superpower and all the drawings together were made into a collage that was auctioned off to raise money for the Chromosome 18 society. Bennett’s superpower, according to Avery? Dog Singer. (I think she’s referring to his amazing power of bugging all kinds of dogs, from trapping Piper in her kennel then serenading her with Tammy — pictured below — to laying on Percy James in Colorado, to squeezing Beatrice’s head and constantly removing her collar in Dallas, to riding Anouk in Calgary. Sigh.)

In which siblings draw their Chromosome 18 sister's or brother's imagined superpower

In which siblings draw their Chromosome 18 sister’s or brother’s imagined superpower, from their helping hands to their ability to adhere to strict schedules.

It was another way for the siblings to think about their brother’s and sister’s strengths. Just as many of the Chromosome 18 kids aren’t superficially “beautiful” when viewed through a conventional lens, neither do they necessarily possess conventional abilities like “good at math” or “good at sports.” Bennett really excels at bugging dogs — in part because he loves dogs and that’s how he expresses it. He has perfected the genuine belly laugh too, and he’s tops at jumping on the trampoline. He’s also good at swimming and watching Super Why. Part of what makes those things his “powers” is that he truly enjoys them. And that’s what really matters — Bennett is happy. So many of these Chromosome 18 kids are happy, and they are so, so loved. And that is beautiful.

Looking back now I realize it was my issue that I felt out of place at our first conference in San Antonio. Three years ago, I hadn’t come to terms with Bennett’s diagnosis. I hadn’t accepted it or owned it. I think I felt that he could somehow still be cured and returned to “normal” rather than simply treated. I wanted a magic pill that he could swallow, that would fix his broken DNA. I realize now that I was one of those people who saw physical differences and disabilities and became uncomfortable. No matter how I framed it, I had a hard time seeing beauty in difference. Instead of seeing possibilities I saw only challenges. Of course I loved Bennett. But I didn’t love his genes.

I’m not sure when my perspective shifted; it happened some time between writing an essay for Swerve and writing a personal piece on living with autism for Today’s Parent two years later. In the Swerve piece I am still filled with despair, while the Today’s Parent story radiates hope. That’s not to say every day is a love affair with his genes now — they are still challenging, but like a pair of Levis that gets broken in over time, they are a much better fit for our family.

At this conference I saw families living with a range of genetic configurations, but each child fit into his or her family, and each family was doing its best, loving its hardest and celebrating the beauty in difference. And that — combined with more research through this amazing society — will help these kids reach their potential, whatever it might be. Forget dog singer. Maybe one day Bennett will be a horse whisperer.

Bennett has a moment with a horse at the National Ability Centre in Park City, Utah.

Bennett has a moment with a horse at the National Ability Centre in Park City, Utah.

When I say my kid is special, I mean “special” special

On the outside, my son Bennett looks like any typical four-year-old boy. He’s cute, has a naughty streak, loves to jump on the trampoline and relishes tormenting his big sister. But all is not as it appears in his school picture.

Bennett also has a genetic condition called 18q- . He’s missing a small piece of one of his 18th chromosomes. This means he has been slow to hit milestones like walking and talking; it also means he has a difficult time playing and interacting with peers. On the whole his symptoms looks a lot like global developmental delay or autism (which he has also been diagnosed with).

Only one in 40,000 children in North America are born with a Chromosome 18 abnormality. When my husband and I decided to try for a second child and play what we used to half-jokingly refer to as “genetic roulette” (because we were, at ages 36 and 35 respectively, somewhat “older”), this condition was definitely not on our radar. And anyway, who really thinks they’re going to have a baby that makes them want to stop reading What to Expect the Toddler Years because he can’t stack blocks, or walk, or put two words together? In those early years, it was easier to put down the book and hope Bennett would catch up, than entertain the thought that something was wrong.

Saying it’s hard to parent a child with special needs is an understatement. It’s a slog. It’s tiring, it’s isolating and it’s scary. We worry about Bennett’s future (will he be living in our basement and bagging groceries at age 30?). And sometimes, because that thought is so frightening and depressing, all we can do is joke about it (humour really is the best medicine). Last week I chatted with a neighbourhood friend at the playground about Bennett and shared that he’s recently been potty trained (yay!) and he lost his first tooth. My take: “We’re so glad he was potty trained before he lost the tooth. I would have been beside myself if he was wandering around in diapers with a big gap in his mouth.” There’s a certain order to milestones, after all.

But joking aside, what happens when you have a child with special needs is this: your illusion of the perfect life with perfect children is shattered. There won’t be skiing at age four and hockey at six and lots of friends. There may not be university or marriage or future grandkids. The not knowing is scary, and sad. So I mourn the experiences I thought I’d share with my son. But I also work hard to celebrate his little milestones, like learning to dress himself, because for Bennett, that’s huge — it’s one small step on his slower, windier road to independence (and one step away from my basement). I also embrace and enjoy the awesome things we do together, like riding the Lake Louise gondola or playing on the beach in Mexico.

I also try and accept Bennett for who he is, and appreciate what he has brought to our life. More patience. More love. Way more hugs and kisses. He may not be skiing next winter, but you can bet he’ll be riding the magic carpet.

We love you B!

Bennett is currently attending preschool at Renfrew Educational Services where he works with therapists on his speech, fine motor and gross motor skills. He has made huge strides over the last two years and he will be attending kindergarten there in the fall. To say thanks and give back, Blake and I are raising money for Renfrew. Read more in Wednesday’s blog.