LIVED THROUGH THIS
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
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That June morning, I was one of those parents unable to hold back tears at a school function — our kindergarteners were closing out the school year with a performance of “Count On Me” 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.
But unlike the other parents, my tears weren’t prompted by the cuteness of the situation. What did me in was a sudden, emotional rush that I could not control. 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 school 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 his bright neurodivergent little brother. 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.
Every year, thousands of parents in New York City have to prove their child’s need for an education the city refuses to provide but is happy to write checks for. Once you give up on having your kid attend the same public school as their friends and neighbors, the most viable option for those who can afford to is to enroll them in a private school and sue the city for tuition reimbursement.
The lawsuits move forward on the grounds that the city blatantly fails to provide children with learning differences with an appropriate public school option, as required under the Individuals with Disabilities Education Act. This is no small-fry line item. In 2018 alone, the city spent over $800 million dollars on private school tuition for children with learning disabilities, per the New York City Department of Education.
Can you imagine what the city could achieve if it invested $800 million a year to provide these students with the public education they have a right to, rather than shuffling them off to private school? What would our public schools look like if they weren’t just talk about inclusion, if they really wanted to serve all students?
Two months after the performance that put a merciful end to kindergarten, in August 2016, we made a trek to a fancy hospital in the Upper East Side. The pediatric geneticist’s office felt more office than medical — there was no exam table, but rather a desk and four plush chairs arranged on either side. She welcomed us both warmly and made small talk with the six-year-old whose genetic secrets she knew and we didn’t. After a couple of minutes, she looked at me and smiled. “We found something,” she said, and I reflexively handed my unlocked phone to the impatient little hands waiting next to me.
We were so accustomed to this drill. At doctor’s office after doctor’s office, for years, we’d start with a short first act when he’d take center stage. They’d put things in his ears or make him sit still like a statue for a “special picture” or poke around his stocky little body. Intermission was when he received a sticker or a lollipop and the doctor in question turned their attention to me. The second act was spent with the doctor talking to me about my son as if he weren’t even there. He would get restless fast, his ADHD years from being diagnosed but fairly rampant nonetheless, and I would hand over the phone to keep him busy but also because it pained me to be talking about him like this right in front of his face.
Just about every parent believes their child is one in a million. Mine literally is. At the time of his diagnosis, only about 50 cases of Baraitser-Winter had been recorded.
That’s not a typo. Not 50,000. Fifty, five zero.
I looked away from the doctor and felt strangely calm as I watched my son gleefully blasting angry birds into space. I knew in that moment that we were going to be okay.
I expected the diagnosis to be this revelatory moment. Trumpets playing in the background as I finally got all the answers I had spent years searching for. Since the day he was born, I had been on a long-winded mission to understand what might be going on with this hilarious, thoroughly uncoordinated snuggle bug who got everyone in his pocket within seconds. We had visited one specialist after another, most of the time leaving with half-baked answers and a parking ticket. And now here we were, with a diagnosis that tied it all together: the progressive hearing loss, the development delays, the quirky wiring.
The truth is, the diagnosis was more relief than revelation. I could stop driving us batty searching for answers and simply be his mom. I still didn’t have all the answers — no parent ever does. But it enabled me to focus my energy on what was in front of me.
As far as the school system is concerned though, the diagnosis was a game changer. They won’t listen to a child’s own parent, what would they know! But a doctor, from Cornell! Please, this way, ma’am, let us see what we can do.
I didn’t end up suing the city in 2016. But I sure as hell pulled him from that school that had shown no intention of walking their lofty inclusion talk. Eventually, we moved north, seeking more space and an environment that welcomed both of my kids and enabled them to thrive.
Despite the challenges of the last two years of pandemic life, the move has been a game-changer. With school no longer a daily struggle, where he was othered and minimized, a square peg forced to fit in a round hole, my son has grown to become more confident and is an excellent self-advocate. For the first time, he actually looks forward to going to school every morning.
That’s what all parents want, right?
Parenting can often resemble the most demanding of extreme sports, with all sorts of obstacles and judgement along the way. When your child is one in a million, or simply learns differently, the obstacles seem to multiply and get up close and personal — and school can be the tallest hurdle. But in the end, we’re all trying to get to the same finish line: for our kids to be happy, accepted, and celebrated just the way they are.
This June, that former kindergartener will be moving up to middle school. I already know I will be a mess at his elementary graduation — once a crybaby, always a crybaby. But this time I know for a fact that what I’ll feel will be joy and so much pride, as I watch my son continue to forge his path, walk his own walk.
