Special needs

Back-to-school anxiety when your kid has special needs

"I feel like I'm tossing him to shark-infested, under-funded waters with children who can't possibly understand why he sees and feels things differently."

special-needs-Schwartz-2 Charlotte with four-year-old Isaiah.

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 shopping when 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. 

This article was originally published on Aug 28, 2015

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