On this day, the researcher and cochlear implant surgeon Dana Suskind is
hosting a conference in Washington DC today with other groups who are
interested in the Thirty
Million words concept. On this same day, moms are having
an impromptu conference in a closed group on Facebook regarding the hardest
decision of their lives—whether or not to get a cochlear implant for their
severe to profoundly deaf child.
First, let me make a couple of points that
most people do not know. The choice to
get a cochlear implant for Ella…her first implant…was the hardest decision I
have ever had to make. Not just because
of the head surgeries it would require or the threat of a mechanical failure of
the device, or the fear that it might not work, as many people in the deaf and Deaf communities told us. I cannot tell
you how many times I heard the sentence “It does not work for everyone.” from
deaf people that year. So we wondered,
were we doing something to our child that would cause her pain, or physical
harm, that would turn out to be completely useless to her in the long run? That
seemed like a really terrible idea.
To add insult to injury, I was attacked
several times for the decision by members of the Deaf community. The first time
I mentioned to a Deaf adult that we had decided to get a cochlear implant for
Ella, was at a conference in Philadelphia.
It was at the annual meeting of my professional organization, the
American Public Health Association. Two
of the younger consultants on my team were making presentations at the
conference and I was attending the poster presentation for one of them when a
poster across the aisle attracted my attention.
It was a poster on health disparities in the deaf community. I read the research with a lot of interest
because it said what I feared—that being deaf made it harder to get and
understand critical health information, probably because the medical system was
not set up to make it easy for deaf people to get their needs met. Regardless, lots of health indicators from
heart disease to diabetes, are more prevalent in the Deaf community and
according to this poster that was because of a breakdown in communication
between provider and patient.
I started asking the author some questions
about the poster through an ASL interpreter.
After several exchanges, the researcher asked me why I was so interested
in the topic. The interpreter translated
her question. I told her that I was
generally interested in health disparities in underserved populations, and that
in this case it was personal because my four-month-old daughter was recently
diagnosed with bilateral profound hearing loss. She is deaf. The next question seemed innocent enough to
me, but it was a trap. The interpreter said, “What are your plans for her? Are you learning sign language?” I answered,
“Well, we are doing some signing with her because I had taken an introductory
signing class, but we were enrolled in a listening and spoken language early
intervention program and we were headed in the direction of a cochlear implant
for her.
And then the dagger.
After the researcher stared me down and
signed something, the interpreter said, “Don’t you love your child just the way
she is? Why do you want to change her?”.
It was at that moment that my plans
instantly shattered. I had seen the
positive effects of a cochlear implant on other kids and I thought we were
headed in the right direction, but my doubt that it would work for her came
immediately to the surface. I needed
convincing again—I was again unsure that it was right. And worse:
I was now certain that at sometime in the future, the decision we made
would be seen by deaf people, and possibly by her, as something that we were
doing to try to “fix” her because she was not whole in our eyes. I asked myself
if I did not lover her because I thought she was not whole or because she was
not perfect as she was. Every fiber of
my body replied it was not true—not even remotely close to the feeling I
had. I loved her with my entire heart,
so how could I love her immensely and wholly without thinking of her as
whole. Then I asked myself—Will you ever
be able to convince others and her of that fact if we chose to alter her
hearing status?
I still do not know.
But the way I see it, according to the
latest research on prenatal
neural plasticity in the brain, babies start hearing in the womb at 5
months gestation and can remember words they hear in the womb once they are
born. Their brains are literally wired for language—sound based language. Because
my daughter heard fewer words in the womb than a hearing baby, she was born
with a 4 month language delay. According to Dana Suskind’s research and others
who have studied language development, if you take a child who would otherwise
be language delayed due to poverty or hearing loss, and you increase the
conversation in the home using three T’s: Talk more, Take turns in
conversation, and Turn off the TV, you can help that child overcome his/her
language barrier. The key to having
smarter kids is to talk to them more and let them experience language with
family members as much as possible.
In addition to the auditory training that
you do with a baby who is deaf and wears hearing aids, you also are told early
on that the best thing that you can do for him/her is talk, talk, talk. And wait for them to talk or make sounds back
and then reinforce that early conversation with positive feedback and more
talking. We learn to narrate our entire
lives in order to cram those 30 million words into the child’s little brain.
You know what else I learned? One of my dear friends who had her child with
hearing loss first and then had a second child, a hearing baby, she learned how
to parent this way. Auditory verbal
therapy was the only way she knew how to relate to a baby. So she talked and
talked and talked to both of her children. All. The. Time. And you know what happened? That little baby of hers was already talking
at 8 months old. I remember him starting
to pull himself up on a chair and pointing to things and saying, “Duck!”,
“Ball!”, “Uh, Uh Up”. Was he smarter? Probably, but maybe that was, no more than
likely that was BECAUSE of the talking.
So how does a hearing parent of a child who
is deaf give their children that kind of language? How do we bathe them in
enough words to help them jump the hurdle they are born with? The baby is
already a little behind at birth, but has tons of potential. The brain is a sponge, but not forever. By three years old it starts and by five it
is well on its way to being less plastic and malleable. Early intervention is
supposed to be happening by 6 months of age because kids enrolled that early do
better later.
So, by my logic, unless we could force feed
her a complete and rich language all the time for five straight years, starting
at age 6 months, we would need to be fluent in that language before she was six
months old. I asked myself a question:
Could you be fluent in American Sign Language by the time she is six months
old? Well, guess what—she was not fully
diagnosed until she was 3.5 months old.
So by the time I was asking myself this question, I had 2.5 months to
get fluent in sign language. No
way. Not unless I quit my job and
absorbed myself in the deaf culture. And
even then, her sister and her father would likely not be fluent in time. No way her grandparents would be, not to
mention everyone else that should could get words from in our world: neighbors, friends, people on the street, the
guy at the yogurt place. I was not
planning on letting a Deaf mentor move into my home so that he or she could
give my child that language. Teaching
her to learn a language definitely felt like my immense and terrifying
responsibility. If we chose sign
language, it would be essentially at least 95% up to me to give her those 30
million words. The math was
overwhelming. I had roughly 2.4 million
minutes (if we did not sleep at all in the next 4.5 years) to single-handedly
give my child 28,500,000 signs! On top of my already overwhelming mom-life, I
did not have faith in myself to take on that type of responsibility.
Maybe that is lazy. Maybe it does not recognize who she is. Maybe it hurts people in the Deaf
community. But it was my reality. I did not think I could do it. And I recognized it early enough to make a
different choice. I concluded that she
needed to have the opportunity to get access to EVERYONE’S words in order to
give her the verbal strength to leap over her language gap.
As I peruse the 60+ comments on my Parents
of Children with Hearing Loss Facebook group, I do remember how painfully hard
the decision was. I remember how much I
cried and worried. I remember wanting to
run to Mexico the night before her surgery so that we could just avoid it
altogether and keep her just as she was.
How I wished for a crystal ball that could tell me if it was going to
work for her and if she would hate me for it later. Somehow, we pushed through all of that and
made the hardest choice of our lives. And here is what it kind of looked like
for us to actually go through the surgery:
http://www.youtube.com/watch?v=w_n01GlUAss
http://www.youtube.com/watch?v=w_n01GlUAss
The Deaf Community will have a hay day with
that video because of the reference to “fixing” something in the lyrics. There is a difference between wanting to
“fix” your child and wanting to “fix” her ability to learn language from her
own family. Most people think that the
CI decision is about hearing or not hearing.
It is not like that for me. It is about LANGUAGE.
The Moms of the Ear have a lot of choices
to make. Hard ones. And they do it every day— CI or hearing aids
or ASL or all three? FM system or no FM
system? Oticon or Phonak or Seimans? Hold
for us a little loving space to make our decisions. Try not to prey on our fear or heartbreak or
love.
Instead, just pray. So much more helpful.
Instead, just pray. So much more helpful.
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