My Kid Is One in a Million. Literally
When your child doesn’t fit in a neat box, parenting can feel like an extreme sport — and school is often the ultimate challenge
That morning, I was one of the parents unable to hold back tears as our kindergarteners closed out the school year with a performance of “Count On Me,” a song by Bruno Mars. This being 2016, their big smiles were in full display, all baby teeth and pride in their colorful Hawaiian shirts and plastic sunglasses. Unlike with the other parents, my tears weren’t prompted by the cuteness of the situation — which was definitely overwhelming.
What did me in was a sudden, emotional rush that I was powerless against. The struggle of the last 10 months came down on me like a torrential rain as I watched my six-year-old sway his hips to the music. “You can count on me like one, two, three… I’ll be there.” Kindergarten is supposed to be a magical year of finger painting, stick figures, and first friends. For my sweet boy, it had been a daily uphill battle that he had no chance of winning.
My son has ACTG1-associated Baraitser-Winter syndrome. It is a rare genetic condition that presents with progressive hearing loss, development delays, and neurological differences. It doesn’t exactly roll off the tongue — with a name like that, you’d think the poor kid might have sprouted a second head, but on the surface he’s a fairly normal child. Whatever “normal” means.
I didn’t know any of this yet as I watched him sing that morning at the auditorium — he would be diagnosed two months later. What I knew was that New York City had broken my heart as it embraced my neurotypical older son but turned its back on this bright neurodivergent boy. Naively, I had assumed that this epicenter of diversity and progressive values would be the place for a child like him to thrive. A couple of weeks before the performance, the elementary school he attended, where the word “inclusion” flowed as freely as fidget spinners, had politely showed him the door by recommending he attend a program for intellectually disabled children. Which made no sense for him at all. We love inclusion! Let’s include everybody in our public schools! Just, uh, just not those kids.