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I had the absolutely most perfect baby in April 2010. And for the last 6 years, I’ve been trying to figure out what the heck is wrong with him.
He was born 5 weeks early. He was tiny and perfect. We went home a couple days later with the only homework of following up about his hearing, as he had failed the test at the hospital. It happens a lot with preemies, they said, it’s probably nothing. He was the sweetest, happiest infant. A couple months later we found out he had moderate hearing loss in his left ear. And thus begun the search for answers.
At first, doctors were concerned that the hearing loss was due to developmental issues during pregnancy. I learned that the hearing develops as the same time as the vision, kidneys and heart; the doctors were concerned that there could be issues there too. So off I went with my content baby to see a pediatric ophthalmologist, to get a sonogram of his kidneys, to check his heart. Everything, thankfully, was normal. Those visits were sprinkled in between audiologist appointments, which were fruitless half of the time as he would have fluid in the ears and thus the readings were inaccurate.
So that was that. As I focused on his hearing and inner ear issues, which required 2 surgeries, I choked up the hearing loss to family history. My husband and I have no hearing loss, but there’s some history in my mom’s family. I didn’t quite care to pinpoint the cause. My boy was an incredibly funny little boy, loving and strong both physically and emotionally.
And then came kindergarten and shit hit the fan.
With the hearing loss and inner ear problems came a speech delay. There were (are) also motor and other developmental delays. We were very busy giving him extra support and being ever-vigilant about his hearing. He was happy. He was doing great. He loved preschool. He was late with most milestones, but he was making progress at his own pace.
And then came kindergarten and shit hit the fan.
We are very fortunate to live around the corner from a fantastic public elementary school. My older son is thriving there. People have been moving to the neighborhood specifically because of that school. But here’s a few facts about kindergarten that don’t go well with all children, and definitely not with those with developmental delays: these 5-year-olds get no rest time. They have one recess. They get 4 pages of homework daily. They get tested for math every week. They get sent to the vice-principal’s office on a regular basis — oh wait, that last one was just my kid.
When I was little, they didn’t teach us to read or write until first grade, let alone give us homework in kindergarten. Anyway, this highly structured environment with a heavy dose of academics and little time to play was not a good fit for my boy. He started showing lack of stamina. He had trouble making it through the day. The teachers were concerned, and so was I. A little boy who eats well and sleeps a solid 11 hours at night shouldn’t have trouble getting through his school day, should he? So off we went again. Testing his thyroid. Testing his metabolism. All’s well. All’s normal. And just when the school situation was at its worst, we went for a routine checkup to the audiologist.
The new audio reading showed hearing loss in both ears. Change is not a good thing with hearing loss. You want it to stay where it’s at, and most of the time it does, or it just gets worse when you get old. But my sweet boy’s hearing loss is not a straightforward one. It’s not the kind grandpa has where he can just turn up the TV. My son’s is sensorineural, and he hears some sounds better than others. So off we went again.
And just when the school situation was at its worst, we went for a routine checkup to the audiologist.
A bunch of auto-immune diseases were brought up as possible causes of damage to the cochlea. We got them all ruled out. Coincidentally, we were changing pediatricians at the time and his new doctor, after hearing the 2-minute version of his medical history, brought up genetic testing. I was like, Whaaat? It sounded so sci-fi. I was sick and tired of walking through a never-ending dark tunnel, so up to the Upper East Side we went. We did one test. It came back fine. We went for a more involved one, and 3 months later, we got results.
My son has ACTG1-Associated Baraitser-Winter Cerebrofrontofacial Syndrome. There are 50 documented cases to date, so there’s very little written about it. It comes with progressive hearing loss and developmental issues. It doesn’t quite roll off the tongue, but that fucking weird name was an instant weight off my shoulders. After 6 years of searching, we cracked the code.
A couple of weeks ago, I got word that he can transfer to a different school. This school is the only fully-integrated public elementary school in all of NYC. A school where special-needs kids are not the exception, where they can feel normal, as they make up half of the student population. You would think that this model would be replicated, instead of forcing small elementary schools to have an ICT class per grade and do their best to service a handful of kids. I’ll leave that up to Bill de Blasio to fix.
The upcoming school change is a big bright ray of sunshine, and the diagnosis feels a lot like that. As much as it sucks, as much as there’s very little research on it, I finally can stop worrying about what it isn’t. For the last 6 years, one doctor after another has been clueless as to where my son’s issues are coming from and how best to address them. The truth of the matter is, he’s a crazy happy charming monster with more hip game than Shakira. His strength has kept me in check at many doctors’ offices. This diagnosis puts me finally on a somewhat clear path — an arguably bumpy one that hasn’t been explored much, but a path nonetheless.
I’ll lead the way for him in my full mama-bear suit. Onto our next chapter.
Teresa Lagerman is the founder of Brooklyn Makers, a blog and online shop that celebrates the talent of local artisans.