|
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!#