If you’re the parent of a deaf child, especially one that manages to avoid early detection from newborn hearing screenings, you might find yourself with a lot of guilt. Though my son did fail his newborn hearing screening, he later somehow passed an otoacoustic emission test (OAE) and was declared hearing until 15 months old, despite my intuition otherwise. In hindsight, many people say to us, “How could you not know?” This only adds to the self-blame, with the implications that we should have known sooner, been more aggressive with testing, and regret not learning ASL earlier.
To those people, I can answer: don’t judge til you’ve been in my shoes. And I imagine there are many families out there, especially in the days before newborn screenings, who also did not realize their child was deaf. Aaron was my first child. Had he been a second or third, perhaps I would have had something to compare to, and realized sooner. Still, looking back in his baby book, I see that I recorded his first “ma-ma” at 6 months, right on schedule. He actually babbled for several months before he stopped because he didn’t have his own auditory feedback. Little did I know that it’s quite typical for deaf babies to make sounds as a natural development of mouth and tongue movements. He just never attached those sounds to meaning, and eventually stopped making them until we started giving him visual positive feedback, especially for sounds like laughter.
People have asked me how we couldn’t have noticed that he didn’t react to noises. Well, he did! Or at least, we thought he did. He was very astute at picking up other visual cues, vibrations, and even air movement. We would drop a toy, and he’d turn around in response. But we have hardwood floors, and he was feeling the vibrations, some even so subtle that we didn’t notice them. As an infant, he would wake up when we walked upstairs. We thought it was from our creaky floor, but it was actually from the vibrations those creaks caused. He would look up when we took a picture, but not from the beep it made, like we thought, but from the tiny “focus light” that we didn’t even realize was there. We tried the old “bang pots and pans behind his head” trick, and he must have felt the air movement, just as he did from people speaking into his ear. He even used to calm down when I sang to him, but I always held him over my shoulder, and he could feel the vibrations in my chest and feel my breath on his ear.
There did come a time that we started to suspect that he wasn’t actually hearing any of these things. We’d stomp on the floor to get his attention, knowing it was from the vibrations. But he even fooled doctors for 15 months! After “failing” multiple OAE tests, they somehow got one positive result, and just ignored all the previous ones (a completely objective, accurate test, they assure me to this day.) As he got older though, I took him back to the audiologist for follow-ups, where they did a more subjective audiogram that involved playing a sound and then rewarding the child with a flashing Mickey Mouse light when he looked up. As I watched him through this test, I wasn’t convinced that he was reacting to the sound, but instead was anticipating the lights. He also was a very curious baby and would often look around randomly, and I believe the audiologist mistook many of those random glances as valid responses. I’m not sure what’s in his charts, but they’d like me to believe he was born deaf, failed his newborn hearing screening, then magically gained his hearing at 4 months to pass only one of many OAEs, and then lost it again at 9 months. I’d like to include this article as a footnote in his medical chart.
Despite my concerns otherwise, I wanted to believe the doctor. I was cautious and not fully convinced, but as a new parent, I just wanted so badly for my child to be “normal,” so I believed it at 12 months. But by 15 months, I knew there had to be more to my suspicions. My one-year-old didn’t even know his own name. We’d take him to a photographer for portraits, and they couldn’t get him to look up. I began relying on my intuition more, and with the encouragement of his pediatrician, took him back for another audiogram, which he again passed! (Then again, I myself managed subconsciously to figure out these tests as a child, which is why my own hearing loss went undetected til I was in fifth grade.) My one-year-old had outsmarted a group of doctors; in a way, I was kind of proud! The pediatrician had me fill out a survey that I later found out is used to help diagnose autism. On it were all sorts of questions about whether your child makes eye contact when you speak to him, if he interacts well socially, if he is talking at age-level, etc, to which all of my answers were “no.” Then there was a question “Do you think your child can hear you?” to which I hesitantly answered “no.” (Had I answered yes, the doctor would have been concerned about autism, but she cleverly used it as a way to get me to admit I thought he was deaf. The similarities show how easy it would be to misdiagnose deafness for autism and vice-versa.)
So with my son at age 15 months, I found myself in a battle with doctors and insurance companies to run a more thorough and objective hearing test, the ABR (automatic brainstem response.) Since he was older, he had to be mildly sedated for the test. After a few weeks, back we went to the audiologist (we were magically assigned a different one this time!) for the test that finally conclusively proved what we had been suspecting for a long time. As I’ve mentioned in other articles, the doctors give you the results of this test in a low voice, head looking down, ready to tell you the “horrible” news that your child is deaf; we were thrilled! The nurse said he’d never seen anyone take it so well. By that time though, we had already gone through our brief grieving period and come to terms with the fact that our child was different. By that time, we were ready to have an accurate diagnosis so we could move forward with Early Intervention and begin deciding how we wanted to proceed with education and communication methods.
Now that we have a second child, we are observing how much more vocal she is than Aaron ever was. She reacts to sounds much more conclusively, even from another room or outside, where there is no chance her reaction was from vibrations, visual cues, or air movement. And perhaps had our second child been deaf instead of the first, we would have noticed the differences. I will always wish we had started ASL sooner with Aaron, and will always hold a small grudge against one particular audiologist, and against myself for not being more forceful and outspoken when I thought their tests were wrong. Still, I have learned not to beat myself up, and ignore the people who think I’m a bad parent for not noticing my son is deaf. It seems like a fairly obvious thing, right? Well, it wasn’t. And I’m sure there are plenty of other parents out there who felt the same guilt, who missed the same signs, or were fooled by a very visual child who had everyone convinced he could hear!
