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ASD Roadmap

Adventures with Margot

A leap of faith, into a river of possibilities

Act I: The Inspiration

April 22, 2017

We live our lives in a kind of ignorant belief that things will work out ok, a kind of blind and self-serving faith in ourselves and our future, at least until we have reason to believe otherwise. Having a child with a disability is one of those reasons.  And so this faith is one of the first of many unintended casualties of disabilities, because disabilities come out of nowhere, for no reason.

 I have interviewed hundreds of parents who wondered how this happened, what they did wrong, and the answer was, almost always, absolutely nothing. And the children certainly did nothing to deserve their disability.  Nevertheless, lives are so quickly changed changed forever, for no reason. Why her or him? Why me? Why us? What next? And so this faith dies, at least for a while.

This faith looks different for different people (more about that later). And rediscovering this faith can take time.  Until then, parents of children with disabilities are looking over their shoulder warily, and wearily, in anticipation of other surprises.  And until then, parents are tremendously cautious, because you need this faith anytime you try something different, especially when there are risks involved.

Kayaking with children with disabilities is certainly something different and something risky, and not something I ever learned about in school.  I never considered kayaking with children with autism until my first summer leading the Delaware Autism Program, when I was asked to sign off on field trips to paddle down the Brandywine Creek. A veteran teacher's assistant, 10 years my senior, gruffly assured me that it was "perfectly safe".  I learned later that it was the highlight of the summer for both students and staff.  And so I took a small leap of faith, dutifully ignoring the public school administrator in my head whining about lawsuits and other such trivialities, and signed off on the request.

Margot was born after that first summer, and the string of setbacks and stark realizations in her first two years sapped my faith for a while. It took several years of small successes after that, like helping Margot to walk and to shop, before I could imagine my faith in a good life returning. Discovering fun and functional daily routines also helped to turn our lives right-side up. So eventually I wondered, might Margot like to kayak? After all, when I was her age, I almost lived on the St. Lawrence River, fishing in the spring, boating in the summer and skating in the  winter.  I loved canoing so much, I proposed to my wife in one.

In truth, there was no reason to think Margot might especially enjoy kayaking.  Most typical children enjoy boating, but Margot wasn't that typical.  She loved standing in the pool but hated to get her head wet. Could she get so scared that she might try to jump out? In the end, it was the memory of Margot's first ride in our Wike trailer - the realization that I had never seen her really being thrilled like that before - that rekindled the faith needed to try something different.

The first time I tried kayaking, I needed every once of faith, despite an abundance of caution. I found a kayak that accommodated 3 people, for another pair of hands in case Margot took an unwise leap once afloat.  That this other pair of hands belonged to my 85 year old mother just made sense at the time - maybe I was counting on her ferocious devotion to Margot to confer superhuman strength in a crisis.  But the mile and a half section of the Brandywine River I had chosen for our maiden voyage was mercifully slow and no deeper than a bathtub.  Margot stepped carefully into her seat, and, before I had even dunked my paddle and begun to worry about the next thing, she was dragging her hand in the water, smiling with pleasure and cooing with wonder. Faith rewarded!

Kayaking has since become an adventure Margot and I share regularly together.  Meandering down the picturesque Brandywine, we surprise herons fishing in the river, horses drinking from the river, and convoys of college kids drinking on the river with floating coolers of beer carefully towed. Sometimes we pass over the same fords that allowed General Howe's armies to silently cross the Brandywine to surprise Washington in the biggest battle of the Revolutionary War.  Sometimes I stop paddling so that we can both just listen to the river and smell the trees crowding the banks as we drift along. Sometimes Margot pulls stones from the mud of the river, and then laughs at the plops when she throws them back.

We have expanded on these adventures. Sometimes Margot and I bring family and friends along in other kayaks on the Brandywine. At a work-related party conveniently located on the Brandywine, I convinced some colleagues to escape down the river with Margot and I.  Instead of leaving her behind, as I have to do at too many such events, Margot was the star of the party.  She strode through the crowd like a diva on a Hollywood red carpet (but wearing a pink life jacket instead of Dior), and then led our convoy of kayakers.

And kayaking with friends on the St Lawrence River is a daily treat during the week we spend every summer in Thousand Islands Park. In fact one of our first solo adventures is captured in Margot's GoPro Hero youtube video.  Kayaking is just one of the many adventures that Margot and I have discovered, and can now share with family and friends.  This includes trail biking, and road biking with a specially adapted tandem bicycle. In a blog for the Rails to Trails Conservancy, I have drawn lessons from these adventures to share tips for families keen to hit the trails.

In August 2015, Margot and I launched our kayak into the St. Lawrence River, this time from a small pebble beach across the street from my father's house outside of my home town of Montreal. In fact, it was just three miles upriver from the house I grew up in.

This time, it was a blustery day, with choppy gray waves, and a light rain about to start. My father looked on as nervously as he had 40 years earlier, when he and I prepared to run rapids on one of many canoe trips into Parc de la Verendrye in northern Quebec. We had come full circle, because he now saw his granddaughter enjoying something I had first learned to enjoy with him. And a different circle was soon to close; it turned out to be the last day my father and I spent together. He died of a stroke 8 weeks later. It was fitting that his last memory of Margot was of her in a kayak, on a lake, enjoying a paddle.

The logo is adapted from Joaquim Alves Gaspar's drawing of Pedro Reinel's compass rose.