Back-to-school anxiety when your kid has special needs And Living with autism

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The countdown is on. In less than two weeks, my once 8-lb, 6-oz baby boy will start junior kindergarten.

A lot of planning has gone into this, his foray into public schooling. I always looked forward to back-to-school shoppingwhen I was a kid. With my own kids, I’ve daydreamed about the return to stationery stores, running your fingers along the spines of binders with that intense vinyl smell, holding bouquets of freshly-sharpened No.2 pencils and choosing the best novelty erasers.

Our preparation has been more than backpack selection and intensive “How to open your own Tupperware” study sessions, however. Instead, our prep work has involved my son being studied behind two-way glass, boxes checked on forms (so many forms), graphs and metrics showing us where we “are” today versus where we “should” be, and pages-long reports that purport to summarize what’s going on inside the brain of my little boy—my first baby, born with a rare disease called Galactosemia (a serious condition where the body can’t digest galactose, a sugar found in milk), Autism Spectrum Disorder and a Global Developmental Delay.

A kid’s entrance into junior kindergarten is, for all parents, monumental. It means all kinds of things—decreased childcare costs, earlier bedtimes (if you’re lucky) and the satisfaction you will eventually feel when, by osmosis, your kid picks up these wonderful skills and brings them home to you as tokens of your four years of dedication to their development. These tokens culminate in a self-made Popsicle-stick house, an independently produced piece of artwork or lines from a book phonetically read aloud for the first time; catching you off-guard while you stir a pot on your stove or cruise the grocery store aisles, causing you to stop, rejoice and carry on.

In my case, I approach Isaiah’s first year of schooling with tremendous trepidation. Instead of delivering him with confidence to a place where, aside from home, he should be safest, I feel like I’m tossing him to shark-infested, underfunded waters with children who can’t possibly understand why he sees and feels things differently, and parents who, often like me, don’t have the time to know more or to care more about a kid that isn’t theirs.

He’ll need dedicated support. That much we know. At four-and-a-half, the school can expect a child of about two-and-a-half, from a speech and fine motor perspective. The school can expect a child who will burst into tears or lie prone on the tile floor when faced with a challenge or when given an activity that he knows inherently he cannot yet do. I don’t blame him. He faces enough challenges for such a little guy that being able to snip a piece of paper with dull scissors seems such an unfair thing to throw into the mix. But the school can also expect a beautiful, deep-feeling kid who is smart, whose chubby-cheeked, dimple-laden smile will light up their classrooms more than any fluorescent tube lighting could ever do, and who (fortunately/unfortunately) will not be the squeaky wheel, but will undoubtedly require as much of the oil as they can spare.

As we approach, now with only days left, the beginning of years and years and years of schooling, the anxiety and apprehension I feel is mounting. These thoughts send me into “crazy” territory. They cause me to consider home-schooling (something I admire but would admittedly be the worst at). They cause me to consider thousands of dollars a year on a private school which I can’t really afford, and which can’t really offer more resources just because you’re paying. And then there are the logistics—like a Jenga stack—where you move one thing by an inch (or a minute) and it all comes down.

I’m reminded now, more than ever, that parenting any child is like assembling a puzzle. You have to arrange and rearrange all the pieces until they fit together. You’ll wear out the cardboard pieces until the edges start to curl, revealing the boring brown beneath the colourful images you’re trying to create. Your eyes will be bleary from the intense focus, but it will all be worth it when you hear that satisfying click as the last piece falls into place.

In our case, our puzzle isn’t a new one. It’s a hand-me-down with a warning; there are a few pieces missing, but you can work around them. There are workarounds to complete your puzzle—you just have to move those cardboard pieces just so and they will, eventually, create an image very similar to the one you’ve been cultivating, if only a little bit different. We will still hear that click—but the question is: when?

Charlotte Schwartz is a Toronto-based mom of two boys, a full-time law clerk, part-time fitness instructor and baked-goods enthusiast. This year, she’ll run three marathons over three days, from Toronto to Niagara Falls, to promote awareness and raise funds for Galactosemia research. 

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Living with autism

Illustration: Lauren Tamaki

My son, Bennett, is trying to assemble an alphabet train puzzle on the floor of our Calgary home, and things aren’t exactly going his way. He likes it spread out in a straight line from A to Z, but A keeps sliding under a hall closet door, while W teeters precariously on the step down into the living room. Meanwhile Piper, our pooch, keeps trotting across the pieces, knocking them out of place.

“Nooo! No, no, NO!” Bennett, age seven, screams at the floor. Then he beseeches me piteously, “MOMMY! I. Need. HELP!” When I offer to align his afternoon’s work, he becomes even more agitated and pushes me away, sobbing. “Wipe the tears away!” he bawls, over and over. Like the train wreck his puzzle is becoming, my autistic son’s tantrum is careening off the rails. There’s no telling how long his irrational screaming and crying will last, how many Band-Aids I’ll go through trying to literally “mend” his fury and hurt feelings (real bandages—we have a supply on every floor of the house). Usually nothing helps—Bennett is beyond reason until the tantrum runs its course and our family is left feeling drained, anxious and overwhelmed, like crash survivors.

In the three-and-a-half years since Bennett’s autism diagnosis, we have learned to weather these dramatic outbursts. I try not to let my emotions take over, but with logic removed from my parenting toolbox, I am sometimes reduced to tears of frustration (I’ve learned not to yell—it only riles Bennett more). My husband, Blake, steers clear of these derailments, avoiding eye contact so as not to upset his son further. My daughter, Avery, Bennett’s older sister, retreats to her room until the furor abates, or hugs me with a maturity beyond her nine years and says, “I’m sorry, Mommy. It will be OK.” This time, I keep my cool with the knowledge the tantrum will pass.

We have come to understand that autism itself is a puzzle. Along its spectrum—one that is by no means a straight line from low-functioning to Asperger’s—certain therapies, medications or diets work for some kids and help them manage behaviours, or better communicate and engage in school and social situations, while others do not. The trick is to find the pieces that fit.

Ever since he was a baby I suspected that something was off with Bennett. He spent his first year of life fussing, crying and rarely sleeping, with itchy patches of eczema covering his legs. Infants are notoriously difficult, and my daughter had been a dream baby, so initially I figured it was payback. During his second year, when his peers were walking, stacking blocks and trying out their first words, Bennett bum-scooted and eventually crawled (he finally walked at 19 months—on his toes), mouthed toys with little interest in their function and steadfastly refused to talk or even babble much. His delays—especially the toe-walking and lack of speech—made me consider autism, but Bennett made eye contact and was cuddly and affectionate, so I pushed the A-word from my mind.

But the rigid patterns and repetitive behaviours that are trademarks of autism were already starting to take shape. He expected peanut butter toast for breakfast every morning, developed a keen fascination for flipping light switches and watching fans spin, and demanded—by howling in protest if I turned the “wrong” way—that we navigate the same path on our regular neighbourhood walks. At the time, each of these simply seemed like isolated oddities, but looking back, it’s hard to understand how I didn’t see it. I was the cliché parent—hoping for the best, blissfully in denial about the seriousness of my son’s delays and their probable cause.

When he turned three, Bennett began attending an early intervention preschool, based on his severe speech delay. He made progress, learning to communicate with PECS (an acronym for “picture exchange communication system,” which consists of using pictures that stand for words) and, by age four, speech. I vainly hoped he would catch up with my friends’ little boys and take an interest in toys and imaginative play, but deep down I knew something was wrong. So I wasn’t surprised when the school psychologist suggested we screen him for autism at age four. (The average age of diagnosis in both Canada and the United States is four and a half.)

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Though that highly charged word still struck fear in my heart, there was always the chance Bennett wouldn’t have autism and even if he did, I reckoned it would be better to know and put a name on it. When his official diagnosis came in November 2011, I didn’t feel mad or particularly sad—those feelings wouldn’t hammer home until months later, when the reality of what this would mean for our family started to sink in. Thinking back, what I initially felt was relief. Finally, I had an explanation for Bennett’s delays and strange behaviour. Finally, I had the first crucial piece for beginning to understand my son.

Autism Spectrum Disorder (ASD) presents differently for every child. It is classified as a brain-development disorder that affects verbal and nonverbal communication, social interaction and behaviour. It’s also associated with motor coordination difficulties, attention deficits, sleep issues and intellectual disability—not every child with autism has a “gift.”

Bennett is affected in each area: He can tell me his wants and needs, but we can’t have a meaningful conversation; he doesn’t care about making friends; he can’t hold a pencil properly, do up buttons or zippers, or put on his own socks; he needs a medication called Intuniv to help him focus in school; it takes him a long time to process information and he needs repetition ad nauseam to grasp concepts; and his sleep is a disaster. Bennett is also thrown by others’ feelings—he’ll sometimes laugh at his sister’s tears instead of patting her on the back. And often, his emotional outbursts don’t fit the circumstances, which is why an errant alphabet puzzle can spark a meltdown. The older he gets, the greater the gap between Bennett and his peers becomes, but he’s not alone—as many as one child in 68 is now placed on the spectrum, most commonly boys.

The weeks after Bennett’s diagnosis were filled with research and reading; Blake and I wanted to learn everything we could about autism. Part of what makes us human is our desire to mend things that are broken. At this point the autism was a just another challenge to overcome—we switched Bennett to a gluten-free diet and dabbled in supplements, desperately hoping all the literature about the gut-brain connection was valid and that better nutrients would cure the autism.

Six months later a genetic-array test revealed that his autism is likely an expression of an underlying genetic condition called 18q- (he’s missing a small piece of one of his 18th chromosomes). We joined the Chromosome 18 Society, a US-based organization that helps people with these abnormalities, and learned that a whopping 43 percent of members with 18q- are on the autism spectrum. This news helped us come to terms with the fact that we had a son with special needs, but it also robbed us of the hope of a miraculous recovery. Genetics don’t lie. It was a heartbreaking realization—we had an answer, but no cure. All we could do was give him love and the opportunity to reach his potential, whatever that might be. Would it be enough?

Bennett is now in grade two at the same special-education school, and we’re fortunate that he has a great teacher, classroom aides and a team of therapists to support him. We often turn to them as a resource and implement some of their successful behaviour strategies at home, such as the use of a visual schedule to aid Bennett with transitions and to keep him focused on tasks such as the morning routine—he’s a visual learner, like many on the spectrum.

As a family we try to do activities that Bennett enjoys, like visit the Calgary Zoo, go for hikes or walks or swim at a pool. Avery often asks why we always have to do what Bennett wants, like go for dim sum instead of pizza (he’s still gluten-free, for one), or why Bennett always gets the iPad (it’s often the only thing that will motivate him, and we also use it as a reward for completing a non-preferred activity, such as Lego-building). These answers aren’t fair, and I feel guilt that Avery’s childhood is at the mercy of her brother’s autism. To compensate, Avery and I spend time together when he’s at one of his respite camps (day camps run by school and other organizations intended to give families with special-needs kids a break). We’ll indulge in things that Bennett can’t enjoy, like matinees and doughnuts.

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At the same time, we refuse to let Bennett’s condition box us in or direct our life to the point where we stay in and only eat rice pasta, his favourite meal, for dinner. Many parents can feel like hostages within the rigid confines of their child’s autism diagnosis, and as a result they never go to restaurants or take trips for fear of a meltdown. And though life certainly flows more smoothly when you follow a strict routine, for parents and siblings, it can start to feel like not living.

So though I’ve accepted my son for who and how he is, I keep challenging him to enrich our life as a family. He learned to ski two years ago, thanks to private lessons and french fry rewards. Now, skiing is part of our winter routine. Last summer, bribes of chocolate helped him grow more confident on his adapted bicycle. He’s become a fairly good traveller, too, thanks to social stories—very popular among kids with ASD, these are books that can be created by parents to help prepare kids for any social situations, everything from getting a puppy (and how to behave around dogs) to taking a trip. As a result we’ve enjoyed trips to Arizona, San Diego and Costa Rica. It’s not always a smooth journey and Blake and I dip often into our patience well (code for wine bottle or margarita pitcher). When he goes on strike in the middle of a hike or ski hill, I use chocolate to spur him forward. A lot of kids do this; not many of them are seven. Overall, though, I see every ski run, every trip as a victory.

We try to find humour in the seeming absurdity of some of Bennett’s day-to-day behaviours, such as his morning routine of hanging upside down over Piper’s kennel and singing “Tammy” (an old Debbie Reynolds song). Still, daily life can feel like a grind, or like an eggshell walk to avoid triggering a tantrum, and I have to remember to focus on what he can do: hug, cuddle, be silly—there’s no better sound than his belly laugh. I also celebrate his milestones: He can pee standing up, dress himself (socks excluded), doggy paddle across the pool and spell and recognize his own name. And he constantly surprises us by saying words we didn’t know he knew, or by recalling memories we didn’t realize he had.

I wonder at times if I’ve become a better person because of his autism, and I think I have—I’m more patient than I ever thought possible and I’m continually amazed by my perseverance and my ability to adapt to a new normal every few months as behaviours come and go. Life certainly isn’t boring.

I’m past mourning the life I thought Bennett would have, the friendships he’s missing out on, even the relationship I wanted for him and his sister. I see that, when life goes his way—and alphabet puzzles remain in a straight line—he’s a happy child, even if his interests and abilities are different. I see that instead of his confidant, Avery has become Bennett’s protector and occasional scolder (“Get out of Piper’s kennel, Bennett!”). Though he frustrates her and tests her patience, she loves him completely. Living with Bennett’s autism has bestowed upon Avery a beautiful empathy and a certain wisdom.

He tests my patience daily, too, but my love doesn’t falter, and I take it one day at a time. If I look too far into the future, or feel myself drowning in the enormity of his needs—will I still be putting on his socks when he’s 18? Will he be able to live independently?—I shift my attention to today. If he can just line up this 26-letter alphabet puzzle, I think, all will be right in Bennett’s world and, by proxy, ours.

We’ll never completely solve the more complex jigsaw that represents Bennett’s autism, so all we can do is keep looking for those crucial pieces that will help bring the bigger picture—his best life—into focus.

A version of this article appeared in our April 2015 issue with the headline, “Living with Autism”, p.72.

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