By Tami Trowell
On July 9, 1984, I gave birth to my first child, Byron. He was beautiful and I was filled with excitement about being themom I had always dreamed of being. I felt confident, but then as my baby grew I began to suspect something was amiss. I didn't know exactly what that something was, but by the time he was three months old, I questioned our pediatrician. She reassured me that Byron was fine and I was overly concerned.
Still, something nagged at me. I would quietly tiptoe into his room and call his name to see if he would turn. Sometimes he turned and I would let go of worrying for a little while, but then I would find myself trying to find other ways to test him.
An experienced mom told me to be noisy while your children are sleeping so they can sleep through anything. So I was noisy; I could even vacuum under his crib while he slept! I was proud of how well he'd sleep and bragged about it to my friends. Then Byron slept through the Fourth of July fireworks a few days before his first birthday, and the uneasiness crept back into my mind.
One day I'd be reassured when he'd vocalize in ways that seemed normal to me. I even wrote in his baby book that he said "mama." But right around the time he turned one, he became silent. My emotions were like a yo-yo. I'd be convinced there were reasons for concern and then reassured that everything was fine.
Finally, when Byron was 16 months old, I took him to a retired teacher's home for a few hours of child care. When I came back, she very bluntly told me she didn't think Byron could hear. That was all it took—I knew beyond a shadow of a doubt that she was right. All the denial I had been experiencing suddenly vanished, and I had a feeling of complete helplessness. I made an appointment immediately with our pediatrician. She clapped her hands behind Byron while he sat on my lap: no reaction. She wrote a referral for an auditory brainstem response (ABR) test, which measures brain-wave activity in response to sound. The diagnosis: my son couldn't hear. I still have the referral form tacked to the bulletin board in my office. Byron's ABR confirmed profound bilateral sensorineural hearing loss.
At 18 months, early intervention began. When the interventionist came to our home, she admitted that she had no training and had never worked with children with hearing loss. Byron would be her first and we would learn together. She did not know about the controversial
communication methodology decisions that face parents of children with hearing loss. I had never met a deaf person in my life, but I knew "they" used American Sign Language (ASL). I went to the library, checked out an ASL book, and brought it home. Byron had a butterfly mobile that he loved lying under, so I looked up the sign for "butterfly." I tried to follow the picture and its arrows and awkwardly signed "butterfly" to Byron. He immediately signed back an approximation of "butterfly." I frantically looked up the signs for "I love you" and "mommy." I couldn't learn signs fast enough. Even so, the impact of complete language deprivation for the first 18 months of Byron's life, and of my halting attempts to learn to sign all on my own, made it very difficult for Byron to learn.
Now, all these years later, I have a chance to walk that same path again—not as a parent, but as a parent advisor
for the Vermont Center for the Deaf and Hard of Hearing. I have encountered many children with hearing loss over the years, but Geneva is the first infant I have worked with who was born as profoundly deaf as my son was. Erma Bombeck's poem "If I Had My Life to Live Over" reminds me vividly of the experience I am now having with Geneva and her family—but this time the odds are stacked in our favor. Thanks to universal screening of infants' hearing, Geneva's hearing loss was identified early and her family was provided with intervention immediately.
My son taught me to cherish the uniqueness in all of us, and to appreciate how essential communication is as the basis for the way we love and learn. Now I have the privilege of sharing this gift with Geneva and her family. Nothing could be more rewarding.
Trowell is coordinator of the Family Sign Language Program and a parent advisor in the Parent-Infant Program of the Vermont Center for the Deaf and Hard of Hearing. She has worked with the Durgins since three days after Geneva's diagnosis.
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