I worry my special-needs son is lost in the school system

When we realized our four-and-a-half-year-old son Isaiah's needs would be different from other kids at school, we talked to others to prepare ourselves. We sat down with parents of kids with special needs and bent the ear of many an educator. There were eerily common threads weaving every conversation together—almost alarmingly so. But I thought (or hoped) people were just being melodramatic—using words like "fight", "push" and "lawyers." However, we've learned over the past two months how wrong we were. It's not that we didn't sympathize—we've certainly been through a lot with our own kid (Isaiah was born with a rare disease called Galactosemia, as well as Autism Spectrum Disorder and a Global Developmental Delay). But a part of me—maybe the part that spent 16 happy and healthy years in the school system, without issue—just couldn't believe it could ever be as bad as they were making it out to be.

But two months into Isaiah's junior kindergarten year, I understand how painfully wrong, and even gullible, I may have been. You see, in my opinion, the systems governing our schools aren't really meant to be navigated by laypeople. The very fact we commonly use the word "navigate" when it comes to the simple act of sending your kid to a classroom every day is telling. That room should be lined in alphabet borders, flanked by sweet little cubbyholes and smell of homemade playdough. It shouldn't be something anyone has to "navigate." But it's the only word that even comes close to describing the processes, of which there are many and are punctuated by seemingly nonsensical acronyms—IEP, IPRC, SNA, SST, EA, ILP, SEC, SEAC, SEPRC, IST, KIP, ISP, KELI (and that list goes on) and built on games of bureaucratic bingo, constant schedule-shifting to make it to yet another meeting at the school during the most inconvenient workday times, and email tag. Except in this game of tag, you're begging to be "it" so that you can finally run for the hills and away from this vernacular nightmare.

The last two months have not been easy. We know little more now than we did before Isaiah was just about to start school. That says much about the process and the tremendously limited resources. I go to work each day wondering what my boy is actually doing at school. I wonder if he's learning. I wonder if the ratio of two adults to 32 children in his specific class means he's simply treading water in a huge group of able kids, whose skills prop him up not unlike geese flying in a "v" formation. Because I know my boy and the level of his needs, which are not often obvious, I wonder if the teachers find him a burden. I wonder if next year will be better.

It's a regrettable feeling because we felt we had done so much to prepare our kid for school, given all of these special considerations. But these obstacles come flying at us from every unexpected angle imaginable when all we want is for him to go to school every day, like every other kid, and learn how to write his name, or to read a word or two.

Parents we spoke with, and educators alike, told us without reservation that kids like mine—the wheels that don't squeak but which need much oil—can get lost in the "system" entirely. To me, there is a fate for him no more terrifying than that. And I can't help but wonder—doesn't a kid need to be found first, before they can be lost?

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. 

Read more: Back-to-school anxiety when your kid has special needs> The overwhelming process of filling out your child's IEP> The cost of raising a special needs child>