Tag Archives: autism

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.

Advertisements

The boy can swim

Bennett developed a love of water in Mexico in 2011. We clipped him into a life jacket, plopped a sun hat atop his head and he was off, splashing around the pool for what seemed like hours at a time. That summer we hit Surveyor’s Lake in Fernie for more swimming, and the following spring I enrolled him in his first group swim lesson at the Talisman Centre — he had a hard time staying on task, but we persevered. Good thing too because four years later it’s official: the boy can swim.

Blake lowers Bennett into Surveyor's Lake near Fernie in 2013.

Blake lowers Bennett into Surveyor’s Lake near Fernie.

We logged a lot of hours in the water and numerous baby steps to get Bennett to where he is now (head above water). After two summers of encouragement he finally jumped from the dock at Surveyor’s Lake in 2013, and then last summer (2014) he worked up the courage to jump from the diving board into the pool at the Fernie Aquatic Centre.

Fernie Aquatic Centre

Bennett jumps into the deep end at the Fernie Aquatic Centre, the culmination of a week of private swim lessons.

Also last summer, after a week of life-jacket and noodle-assisted swim lessons, Blake encouraged him to try and doggie paddle at Surveyor’s Lake, and again at Kalamalka Lake in Vernon, BC. For the first time, Bennett seemed to want to swim on his own. He tried to kick and paddle and propel himself forward in water. There was hope it would all click and we could retire the life jacket for good.

Bennett attempts to swim at Surveyor's Lake in 2014.

Bennett attempts to swim at Kalamalka Lake in Vernon, summer 2014.

When you have a child with special needs it’s hard to know when they’ll reach certain milestones. With Avery, a “typical” kid, everything happened pretty much on schedule, from walking to talking to potty training (age almost 3) to riding a bike (age 4) and swimming (doggy paddle at age 5). To prove he’s very much on his own schedule, Bennett walked at 19 months, talked at age 3, mastered the toilet at 4, and still can’t ride a two-wheel bike. But we have expectations that he’ll eventually get there. That’s part of the reason we keep trying.

So when Bennett, now 7, began doggie paddling across the hot tub in Fernie in January, Blake figured he was ready to swim without flotation assistance. He marched Bennett into the pool, they swam to the deep end, Blake let him go, and — just like that — Bennett swam to the ladder by himself. It was like all those hours spent in the water with us and with instructors (who at times I’m sure thought he was a lost cause as he stared off into space), finally paid off. Swimming? Check!

Bennett swims across the deep end at the pool in Fernie.

Bennett swims across the deep end at the pool in Fernie.

Yes, Bennett’s is a rather sketchy doggie paddle, and I’m frightened his head will go under at any moment, but the boy kicks his legs and flails his arms and gets across the pool without inhaling its contents. I’ll take it. He may never master the butterfly or even the front crawl, but as long as he can manoeuvre in water without drowning, I’m thrilled. And so very proud. My water baby has finally shed his water wings. Way to go, Bennett!

The reason Bennett jumps

When you have a child with autism you are constantly trying to figure out why he does the things he does. What makes him tick? Of course I can ask Bennett, “Why do you like jumping on the trampoline so much?” or “Why do you like spinning?” or “What TV show are you reenacting?” (when he grins and moves  robotically to a soundtrack inside his head), but my questions are often ignored. I can only guess that Bennett jumps and spins and performs silent live theatre for no audience because these actions give him some kind of sensory input that he craves. (A couple of years ago he went through a phase where he shook his head back and forth whenever he watched TV; it was a kind of screen-induced vestibular stimulation that eventually ran its course.)

Another perk of trampolining? Silly hair.

Another perk of trampolining? Silly hair.

So when Blake brought home the book The Reason I Jump, a New York Times bestseller written by a 13-year-old boy with autism, I immediately dove in. The author, Naoki Higashida, is primarily non-verbal, but he learned to use an alphabet grid to construct words and put into paragraphs the answers to questions people have about autism, such as, “Why do you ignore us when we’re talking to you?” The answers are Higashida’s, but so many of them resonated with me as possible explanations for some of Bennett’s behaviours.

The Reason I Jump

When Higashida is asked the question, “What’s the reason you jump?” he writes:

“…when I’m jumping it’s as if my feelings are going upward to the sky. Really, my urge to be swallowed up by the sky is enough to make my heart quiver. When I’m jumping I can feel my body parts really well, too — my bounding legs and my clapping hands — and that makes me feel good, so good … I’m shaking loose the ropes that are tying up my body.”

But of course! When Bennett jumps on the trampoline he is graceful and free instead of clumsy and awkward. He has boundless energy and a smile and, what’s more, he can jump as well as any typical kid, maybe even higher.

I often feel that Bennett is trapped inside his body, unable to express himself and communicate freely, and this book really drives that point home: “We can never make ourselves understood,” Higashida writes. But The Reason I Jump helps, and that is a gift.

One of the questions the book answers is, “Why are you obsessive about certain things?” The author explains that lining up toys, or watching the garage door close, or turning the fan on and off, is like a physical compulsion — scratching a horrible itch, if you will — and that he’d go crazy if he didn’t do it. That giving in to the obsession makes him feel soothed and calm. But also that one day, the need to obsess over that particular thing just stops: “Somehow our brain flashes up a GAME OVER signal,” he writes.

I’ve noticed this has happened for Bennett. For the longest time — years — every night at bedtime Bennett made sure his door was open and the bathroom light was on (part of his fear-of-the-dark narrative). And then last night at bedtime, out of the blue, he asked me to close the door and then proceeded to Sleep Through The Night… in the DARK. All I can guess is that his brain flashed the GAME OVER signal. Because there is still so much I don’t understand, Bennett will continue to surprise me. That’s a good thing. Perhaps one day he’ll no longer need to jump.

“Autism-friendly” movies screen monthly at Canyon Meadows

What makes a movie “autism friendly”? To find out, we headed to Canyon Meadows Cinemas this past Saturday to watch the animated children’s movie The Nut Job.

The Nut Job is just an okay movie (Bennett much preferred Frozen), but "autism friendly" is more about the theatre environment than the show itself.

The Nut Job is just an okay movie (Bennett much preferred Frozen), but “autism friendly” is more about the theatre environment than the show itself.

Calgary’s cheap seats theatre has committed to showing one children’s movie a month in an environment that turns the notion of “blockbuster” on its head. Instead of showing a 3-D movie in a pitch-dark theatre with loud surround-sound — and expecting tots to stay glued to their seat for two hours — the cinema screens a show inside a theatre with an autism-friendly ambiance. What does that mean? This:

  • Lights are at medium-low level (dim);
  • Sound volume is low (not loud and startling);
  • Tickets can be purchased in advance at the theatre for patrons who don’t want to wait in line;
  • There isn’t 20 minute’s worth of ads and trailers at the beginning of the film (hooray!);
  • Patrons are encouraged to make noise or move around (under supervision) if they wish.

I admit I have avoided taking Bennett, my six-year-old autistic son, to the movies for years — the kid has only seen three movies in a movie theatre in his life! I stayed away because I worried he would freak out about something in the film, throw a tantrum over spilled popcorn or demand we leave half way through the show. The fact that Canyon Meadows creates an environment once a month that makes it okay for Bennett to do all these things, is awesome. No more worrying about being judged (that I’m a bad parent, or that my son is misbehaving) because the other parents in attendance get it.

Bennett enjoys popcorn before The Nut Job at Canyon Meadows Cinemas.

Bennett enjoys popcorn before The Nut Job at Canyon Meadows Cinemas.

As it turned out, Bennett didn’t take advantage of the autism-friendly perks. He ate his popcorn and sat in his chair for the movie’s duration, with nary a word of protest. Other children walked around in the front of the theatre, made noises, occasionally cried. But it wasn’t a big deal because we understood. And, if Bennett had wanted to leave half way through the movie it wouldn’t have been a big deal, either — tickets cost just $5. It’s great Canyon Meadows is doing this regularly. Keep it up!

 

The road ahead

As I sat in one of the Adirondack chairs at  Nellie Breen Park this past weekend, cold beer in hand (civilized, right? And thanks again fellow Inglewoodian who shall remain nameless), watching my children play completely unassisted while I chatted with neighbourhood moms and dads, a thought occurred to me: I have arrived!

It was the first time I was able to actually relax at the park, without worrying about Bennett falling from the top of the slide platform, or him needing my help navigating across the boulders by the gazebo or balancing on the spinning ring apparatus. Meanwhile, Avery played with a gaggle of her girlfriends; occasionally Bennett would chase them down and they would run off screaming. For two hours this went on and I think I stirred from my chair maybe four times. It was liberating.

I love this adapted bike from Renfrew -- makes it a lot easier to learn to ride. At Nellie Breen park in Inglewood.

Gotta love this adapted bike from Renfrew — makes it a lot easier to learn to ride. At Nellie Breen Park in Inglewood.

Bennett and I returned to Nellie Breen on Tuesday morning with his physical therapist, who brought along an adapted bicycle for Bennett to ride. Apart from his habit of looking in every direction except straight ahead (and thus veering off-road), he did great. She’s thrilled with his progress this year and can’t believe all the things he can do by himself (I’m a proud mama). The fact that he’s five and just learning how to ride a bike is a non-issue — I’m happy he’ll even try. And I’m ecstatic that he wants to climb on everything. Hooray!

After my story in Swerve came out last week I was inundated with supportive e-mails from family, friends and strangers. Some people shared their own stories and struggles with me; everyone wrote words of encouragement. My sister-in-law, a social worker, wrote this:

“I ran a support group for a couple of years for parents dealing with “ambiguous loss” (as I called it); mostly those who adopted children and later found out they had FASD and were mourning the “loss” of their dreams/expectations of that child’s future. Very hard. We talked a lot about how the child may be completely happy in their future world they and their parents created for them, but it was the parents who had to change their expectations of what the child’s future “should” look like, as “normal” may not be the reality for them or make them happy. However, “normal” is different for everyone (and usually only an illusion anyways)… Whatever works the best for the child to reach his full  potential in life is all we can hope for. They are all  so different, and I’ve heard of so many “hopeless” cases that have turned out fabulously with futures with jobs, great homes, even marriages and children. So never lose hope.”

I love her perspective, and found it fitting that one of my mom friends whose daughter also has autism, chose to share this inspirational e-card yesterday:

We're travelling a different path, adapted bicycles and all, and I'm choosing to embrace it.

We’re travelling a different path, adapted bicycles and all, and I’m choosing to embrace it.

The road ahead looks clear — if different than I dreamed it would be — and, hopefully, easier to navigate than it’s ever been.