My son Rocco struggled to make any sounds as a one-year-old, and I struggled to justify it, in a constant battle between denial and activism. While other moms were telling cute stories about the words their kids had for things, I was listening desperately to hear even a two syllable babble. The noises he managed were a series of “gnnn” and “nnng”, and nowhere near the first word that was supposed to come around this age.
His first birthday came and went and every day I analyzed his progress, willing him to make distinct sounds. I compared him to every other baby I saw and scared off the other mothers at play group with my inquisitions about their kid’s verbal milestones, looking for something that would either allay my fears or give me a direction to go to address them.
I spent late nights on my computer as my husband slept beside me. I resented his easy mind, while mine was constantly turning over the worst-case scenarios. I searched for bits of evidence that might negate the most likely reasons for his limited vocabulary of guttural sounds. My days were spent making mental tallies of every vacant stare and every obvious cognitive process and checking to see which side was in the lead. I felt helpless, while knowing I was the only one who could and would get answers. In my spare time I pictured my child’s future and mine all revolving around any of 100 possible scenarios of how this might play out.
Would he ever be able to talk? Would he ever be able to communicate at all? Could sign language help him? What if the answer to all of these things were ‘No’? In my best moments I convinced myself that some speech therapy would catch him up, and in my worst moments I pictured him in 20 years as an adult unable to communicate with others or me. I hated that I thought about it from the perspective of how it would inconvenience ME, but I did. I needed answers more than anything and had no idea where to get them.
In a dark, old therapy room a speech therapist asked me about the sounds he could make. I answered “No.”, “No.”, and “No.” to her list, and her eyebrows told me everything. I hated her for not believing in him and for thinking he was just a little lump of clay. I hated myself for thinking that she might be right.
She told me his verbal ability was that of a 3-month-old. Wanting to leave with a concrete answer, I tried to pin her down, “So autism? Yes or No?” She answered, “Well speech delay is something we look for in that diagnosis.”
A few weeks later, Rocco was back at the pediatrician, for yet another in a long string of ear infections. During the exam the doctor happened to point out Rocco’s rare split uvula to a medical student. She explained to me that it “…looks like an upside down heart instead of a little punching bag.” She assured me that it was nothing to worry about as they “Ooh’d” and “Ahh’d” over it as if they had just spotted an albino deer in the forest. I latched on and obsessed over it the entire drive home.
After reading that a bifid uvula, is a marker for a submucosal cleft palate (a hidden cleft in the roof of the mouth), I made an appointment with the local university ENT surgeon.
As we waited to see him, I silently reviewed all my notes to be sure I could get all the details of his story to the doctor. My biggest fear on that day was leaving with no answers and continuing in a limbo of what-the-hell-is-wrong-with-my-kid. I checked my blue notecard filled with details of his medical and developmental history and realized that I looked like I was about to present a blender on QVC.
The doctor arrived and listened intently as I told him every detail of Rocco’s physical and developmental history. He joked with my son and laid him upside down on my lap to peek into his mouth, showing the medical student the thin blue line visible to their trained eyes as a submucosal cleft. I listened as he explained that Rocco would need surgery and a bit of speech therapy to catch up, and that he would be fine.
I felt giddy at the massive weight being lifted, and at having a clear problem with a clear solution for my son. I felt like I had been moved out of the laborious and winding autism line and into the speed pass line with a surgery quick fix. I felt guilty at leaving that line with scores of other mothers who were stuck there with their kids, confused and drowning under all of the mixed messages and complex treatments.
While surgery would undoubtedly knock the wind out of us in a few months, at that moment I had what I needed and wanted. I told the doctor how relieved I was, and he could see it on my face. He said something that still returns to my mind every time I have a doubt about my ability to do what is best for my children: “I knew before I even examined him because I listened to you. I always tell my medical student, if you want the right diagnosis, just ask the mom.”
No matter which line I wound up in, I had a gut feeling that I didn’t listen to, but instead played out every worst-case scenario. At some point I will be standing in a line I don’t want to be in and I won’t be able to get out. Knowing that whatever my gut tells me is probably right will make the wait a little easier.