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JUNE 2005

Genevieve with headband covering her
hearing aids

The Tennis Balls that Helped Deaf Children

By E. Oxman

When you first realize you are having a child your imagination runs wild. Mine envisioned all sorts of things as I lived nine months with blissful anticipation. The fact that tennis balls would become important to me in raising my first-born child never entered my mind.

The birth of a child is the world’s most nearly miraculous event. Our child’s birth was miraculously perfect, but with a crooked “t.” They could tell at birth that our daughter was hearing impaired by looking into her ear canals. Her diagnosis would be bilateral atresia; bilateral meaning both sides are affected, atresia meaning a blockage. Ultimately, her hearing loss would be diagnosed as mild. At birth, they whisked her away to check her kidneys because children who are born with ear anomalies can also have kidney problems since both organs develop, in utero, at about the same time.

We were told Gigi’s loss should be viewed as deaf. I was crushed but the petite maternity nurse waited until the doctors left the room, and she knew more. “That little baby is not deaf,” she said. “You will see. Don’t worry too much.” She would be right. She, this maternity nurse had the old-fashioned skill of observation down to a science. When the phone rang in my maternity room, that new little baby exhibited a startle reflex. I did not quite know what to think since I was a first time mother and my concerns were bigger than the hospital, at that point.

Still, I had been put on a journey and the journey would lead us many, many places.

There was the bear Stem test that we did first. That involved a lot of wires and electrodes hooked up to a computer and things were graphed and written up. It did not give us much hope. It looked as if Gigi might be nearly deaf. During a lengthy and intensive search, the name of a cardiologist kept coming up. Her method was called “Behavioral Observation Technique.” It was actually fun, in a complicated way.

Ultimately, Gigi’s loss would be labeled conductive, meaning it was how she perceived sound by virtue of her ear canals and ear drums. There are many reasons for hearing loss, such as the inner ear not working and often those children are candidates for cochlear implants. They hear the word in a more electronically reproduced way. Gigi hears more like your Aunt Tillie, who has lost hearing as she went past the 80 year mark. Still, your Aunt Tillie grows up with language in her ear, so her loss will not impede her progress through toddlerhood and the elementary years. A family has to be very vigilant in the face of any kind of skill set back in infants. In our case, we put a headband on Gigi for four months. On one side she would have conduction of sound through her skull because a small porcelain-like box would receive the sound and on the other side she would have input of sound through a tiny microphone. Although it was “there,” it was a long way from the world of Helen Keller or Edison, who was also hearing impaired. In fact, Edison knew about conductive loss, and when a famous pianist was playing for him he actually put his teeth around the piano in order to “conduct” the sound into his middle and inner ears, which were intact. This explains his love of producing sound, like the invention of the phonograph.

Educating a hearing impaired child takes a lot of thinking, analyzing, guessing, trusting your instincts, advocating in a way that takes everyone to a new level—educators, other parents, but especially your child and yourself. I would walk Gigi for hours going over sounds in her ear that I knew she had trouble with because of her audiogram that graphed her loss. Sheep in a Shop was a well-read book. It was super fun to find every book I could that addressed sounds in language and I even found books that addressed sound in foreign languages, such as French, Italian and German. After all, I reasoned, if I have to repeat a million different sounds, if I have to create a sound palate over and over, I may as well make it interesting for myself, and who knows? Maybe she will be a linguist! My role model was the deaf Scottish percussionist, Evelyn Glennie. Although I believe her loss is inner ear, she still uses the sound that she feels with her feet and her body to tell her where she is in the music. Since I knew there was a world to enter here, I did, and began a correspondence with The Royal School for the Deaf in England, as well as with the Spencer Tracy Institute in Los Angeles (Tracy’s son was deaf). I found a world of magic surrounded the world of hearing impaired children. With creativity, touch, music, lights, patience and love I would learn such a lot. In England, they have tiny tots hold onto lights that vibrate and light up in time to great pieces of music, like a Beethoven symphony. You learn that when you speak to a hearing impaired child, and say something simple like “Quick, zipper up your coat, please” that the child is sifting through what you are LIKELY to have said. The child thinks “She said ‘ick, perup your throat of peas” and the child is off to the races trying to figure out exactly what you said. Most of the kids, through lots of intervention, become truly adept at thinking ten words at a time, selecting and processing and putting together a sentence that fits the situation they are in. Obviously this skill gets much trickier as they go off to school. That is when the hard work really begins and keeping track of your child’s education is exciting but fraught with issues that are always unexpected and deeply new terrain each time. The most important thing to realize when you have some hurdle to clear, such as teaching hearing to a child who has not as much hearing as you have, is to realize what a gift it is to look at the world from a new perspective, their perspective. I take my hearing for granted, but could not do so with my daughter and never will be able to do so. I have tried for 13 years to hear the world through her ears, and this has been an amazing adventure.

My first gift was her response to her world—my singing, her father’s guitar playing, our dog, Asta’s bark and growl. Every night for nearly the first six months of her life I sang her name the same French lullaby while I walked her around our dining room table until she fell asleep. Finally, after six months, I changed tunes! At about ten months I sang the unsung lullaby and there was no mistaking her reaction: her head moved right up, her eyes looked right into mine, and I immediately understood that she had recognized her old, not heard for a long time, song. It would be a block to build upon. It was a magical moment for us as a family, full of hope and pleasure and joy.

The biggest challenge has been how to hear in school. My attempts to facilitate Gigi’s education have been full of ups and downs. I have made many mistakes where I should have said things differently to teachers, or whomever. I also did many things right.

Now we are at the point where Gigi, as a seventh grader in a mainstream school, is writing her science reports about her surgeries, and what her hearing is all about. I am glad that she understands it all. My job now is to keep the path as clear as possible so that her hearing aids work and she can really be included in the classroom as a serious participant. Not we scour the city for dead tennis balls. We take the balls, use a box cutter to make a slice in them and then slip them over the bottom of the chair legs. This makes the scraping sound of the children’s chairs much less loud and it leaves the room free of wall-to-wall carpeting. Audiologists from the New York City Board of Ed told me that they had trouble getting balls for the kids, so now it has become a little mission for me: I have an old Buick station wagon, and have been known to show up at tennis clubs in Westchester and Manhattan begging for bags of dead balls. At first I felt pretty awkward, but now I feel that it is such a great thing to do. After 9/11 the Department of Special Services for the hearing impaired children was thrown to the wind by budget cuts. I have tried hard to keep track of the system and now my mission is a simple one: recycle the balls, get them ready, and give them to the city audiologists who need them for all the five boroughs. It is great to think that somewhere a third grader can hear her times tables better than ever, and may even win a scholarship to Princeton some day to study math. That is the future of our society and to feel in touch with it through my own family adventure gives us a real sense of what life is truly about—each other. We have been so fortunate to have all the help we have, even from my doorman who has so kindly cut open the tennis balls for us. The kids even like the decorative quality that the tennis balls bring to their classroom! Now we are looking for the newest, hottest color, but green still seems to be all we can find. We are waiting for the day that the Williams sisters commission a new eye-catching color tennis ball! We will be first on line to pick up those that have lost their bounce on the court, but live a different life in the classroom!#



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