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.
Drink - Play - Love 