Parenting a child with autism

It was an ordinary summer day.  People were milling on the main thoroughfare, bikes zig-zagging through traffic, cafés and pubs spilling onto the sidewalk, patrons sipping their way through a lazy Friday afternoon.

We were ordinary that day too.  Just another family, managing the hectic jumble of kids’ lessons, bills, our careers, endless streams of birthday parties, too little sleep and the occasional date night out.

But it was all shattered with a single word: autism.

“Your son has autism,” said the child psychologist, who was neither gentle nor particularly sympathetic when she delivered the blow that knocked us flat for the better part of a year.  I thought I had prepared for this moment.  After all, we had long suspected our youngest son, Casey, wasn’t following the traditional path.  At age three and a half, he was affectionate, happy-go-lucky and bright, but he was struggling to speak beyond two or three word phrases, and would happen upon a word or an activity and get stuck there with a seemingly endless repeat button.  He also had fine motor skill difficulties, gut problems, sleep issues and some other behavioral challenges — things we would later learn are all associated with autism spectrum disorder (ASD).

But it was Casey’s inability to communicate fully and fluidly that stung us the worst.  It seemed cruel and ironic that our son would lack what the rest of the family had in abundance.  His father is multilingual, the master of three European languages, two Indian dialects, English, plus a smattering of Swahili — the hallmark of an early childhood that spanned three continents.  My eldest son was already thriving in an early bilingual (French-English) school, and myself, a writer by trade.  We had words in surplus and we spent them recklessly, unthinkingly.

That would all change.

We quickly learned that what other kids intuited — grammar, innuendo, body language — Casey would have to study, as if a second language, except it would be his first.  So the lessons began in earnest — for all of us, really.  A speech therapist came to our house twice weekly for an hour and taught us the building blocks of what we had been taking for granted.  Piece by piece, she laid out the connecting fragments that we hoped would one day be the means through which our beautiful little boy could both find and express himself.

While our life settled into a comforting routine, albeit a full one, with medical appointments and assessments and therapy sessions magically squeezed into the household calendar, I realized that as Casey was starting to find his voice, I was losing mine.

As any writer who is also a parent of young children knows, it is challenging enough to shave off quiet time for yourself every day to pause, and then write.  Having a child with special needs made that challenge almost impossible.

Writing time quickly morphed into time spent ferrying Casey to various specialists, studying the mysteries of autism, discerning quackery from science, mapping out the byzantine structure of the publicly funded health care system, and complying with the demands of disability tax laws.  All of this while making sure both boys had all the thoughtful attention and care that young children require.  My partner was equally engaged.  (How can you not love a man, who, on hearing his child has autism, goes out and becomes certified in applied behavioral analysis?)  But it was a serious challenge just to keep afloat.

Casey, on the other hand, was thriving.  An integrated nursery school with a clever educative assistant and caring teachers kept him challenged and engaged every day, and his evenings and weekends were full of more therapy, lessons and social outings.

After a year, his few word utterances finally became five or even eight-word sentences.  Occasionally he could even be called “chatty.”  Sure, the grammar was, and still is, often a mess, and he can seldom communicate things in the abstract (ideas, thoughts or items that are not in his immediate, present environment).  But the words come freely and aren’t choked in his neuro-passages, and what he intends to communicate is usually clear.

Watching Casey’s trajectory has often been thrilling.  Hearing hard-earned words, phrases or constructs pop out of his mouth, after months and months of methodical teaching, coaching and practice, elicits rounds of applause from his family, and puts a triumphant grin on Casey’s face.  He knows he’s nailed it.  I never thought I could be elated over a correctly selected pronoun or a subject-verb-object composition, but that’s the way it is with autism: Words are like gems dropping from your child’s mouth — every one, a treasure.

It’s pretty clear that developmental milestones with Casey will never be mapped in a slow, steady upward arc of achievement, as with most kids.  His development lags and sprints in abrupt and unpredictable bursts.  For example, while Casey still struggles to answer simple questions, like “Did you have fun today?” He can easily recount all the stops on many of the bus routes in the city — and spot a hexagon at 300 metres.

Here’s a boy who once, to our collective amazement, cracked a hotel safe at age two-and-a-half, long before he could answer, “What’s your name?” or “How old are you?”  He still, now aged six, struggles with the appropriate response to these questions some days (or seems puzzled that the answers would be relevant to anything).  Autism is one mess of developmental brilliance and delay, all bundled together and you never know which bit will pop up at any given moment.  Somewhere in all of this, Casey resides.

While he is finding his voice, step by painful step, and on his own particular path, we feel blessed, proud of his hard work and achievement, and exhausted.  His journey has become our collective journey too.

Never would I have predicted this path.  But it is the road I’m on, and I walk it willfully, willingly, and with grace and thanks.  You see, when your eyes are opened to the world of children with physical and mental challenges — and there are so many — you never see the same again.  You throw away concepts like “normal” or “ordinary” and you embrace possibility like a religion.  No one works harder than a child who has to struggle to walk or talk or eat, yet still they engage the world playfully and lovingly and with an openness to marvel at.

I may have lost my voice for a while, or rather, the time to express it as I’d like, but need is slowly giving my voice a broader range, more depth and strength, with a tremor of pain and heavy understanding.  So Casey’s voice, as it emerges note by beautiful note, is changing mine, and that’s a positive thing.  And in a strange twist, these days I find my writing often mirroring Casey’s developmental surges: ideas and stories, when they decide to come, no longer appear in slow, steady arcs of completion, but charge fully formed onto the page.

I’ll embrace it, as I have to, and relax into my own developmental journey as I help Casey along his.

Kathleen O’Grady is a research associate, Concordia University, Montréal, Quebec, Canada. She can be reached on Twitter @kathleenogrady.

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