Oct 23, 2008

Paving the Way...

Rachel was born in 1987, before universal newborn hearing screening and before the internet. Her deafness was diagnosed at age two months. We left the audiologist with a diagnosis of a severe-to-profound hearing loss, having no clue what that meant or where to turn to for information. We went through a year of trial and error trying to find hearing aids and a program that worked for Rachel, that would meet our goal for her of having her become a hearing, speaking, fully participating member of the hearing world. When she was 16 months old, we spent a week at the Helen Beebe Center immersion program, became believers in the Auditory-Verbal Approach, and switched to an Auditory-Verbal therapist in Massachusetts, where we lived at the time.

Unfortunately, between ages 10 and 18 months, Rachel lost all of her residual hearing. Thus, although we were enthusiastic about the Auditory-Verbal Approach, it was not going to be possible for Rachel without any hearing. We were fortunate that our therapist agreed to keep working with us, applying the techniques of A-V to a visual oral approach. Rachel ended up being a whiz at lipreading and quickly gained a receptive vocabulary of 100 words. However, because she had no hearing, she did not understand that we spoke with our voices, and so she only mouthed words.

When Rachel was 2 years 3 months old, our A-V therapist (AVT) was speaking with an AVT in Canada, who mentioned that she, too, had a student who was totally deaf, and the family had taken her to New York University for a cochlear implant. This was in August 1989. We called immediately, took Rachel to NYU for tests in October, and the NYU team scheduled her for CI surgery eight weeks later.

We took a leap of faith deciding to implant Rachel. The implant was not yet FDA approved in children but was, instead, in phase III FDA clinical trials for children ages two and older. There was not another child in all of New England with a CI, and so we had no one at home to speak to. When we were in NY, we met a four-year-old girl with a CI who was speaking beautifully, but she had lost her hearing to meningitis at age two, and so, unlike Rachel, her brain had had access to sound before she lost her hearing. We had no idea what to expect, and so few children had been implanted at that point that the NYU team couldn’t tell us any more than that she’d be able to hear environmental sounds.

Rachel received her CI on December 21, 1989. She spent four nights in the hospital, including the night before surgery. This was standard then. A month later, we returned to NY for three days for her initial stimulation. We were thrilled when she responded to sound during the mappings, but we had no understanding at all of what programming her CI involved.

When we were home again, I had so many questions but no one to talk to other than the NYU CI team, and fortunately for me, they were a very small group then, and they readily answered all of my phone calls.

I think back now on all of the questions I had in those early years. Why was Rachel’s head control poor? Did it mean that she had CP? What was the CI surgery like? Did I need to bring anything to the hospital with me? What was the audiologist looking for during the mapping? What was a mapping exactly? What parameters was the audiologist fiddling with? What was the significance of each of these settings? How tight should the magnet be? What response should I expect from Rachel once we got home?

I can only imagine how much more confident and at ease we would have been along the way had I had a resource available like the Cicircle. I would have had parents to go to for information and to calm my worries and fears. The Cicircle listserv itself has served as a tremendous resource for parents over the past 10+ years, but the addition of the affiliated websites makes it even more so. Who better to understand the questions and concerns that parents have than other parents? Who else can anxious parents turn to in the middle of the night and receive answers within an hour when their child has swelling at home after surgery or when the device seems to feel differently than before?

Parents of children born deaf today are so fortunate to live in the information age with information so readily available. To have it all in one place on http://www.cicircle.org/ is even better. Children have already received cochlear implants at younger ages because their parents learned about early implantation from other Cicircle parents. Similarly, it is Cicircle parents who were among the first to understand the benefits of bilateral implants and to pass the word on to other parents. By parents for parents, and, as a result, for better opportunities for our children - This is what the Cicircle has accomplished and what the websites will help accomplish even more.

As a postscript, I have to end this by telling about Rachel today, as well as about her younger sister Jessica, who was also born deaf. Despite having some professionals tell us early on that Rachel would never learn to speak well, she not only learned to speak English well, but she is also fluent in French, won her high school’s foreign language award as a junior, and achieved the highest possible level of “superior” in a statewide French competition for excellence in spoken French. She also won her school’s Faculty Cup award at graduation, an award agreed upon by the entire faculty for excellence in academics, citizenship and personal growth. She is currently a junior in college majoring in travel photojournalism, is an avid traveler who has been to France six times, as well as to Italy and Israel, and soon will be heading off to Australia and New Zealand, all on her own, navigating her way independently.
(Note: Rachel is speaking French in this video)
Jessica is eight years younger than Rachel. She had the advantage of being born to parents who had been there done that by the time she came along. We were living in Atlanta by the time she was born, but we traveled back to NYU in order to have her implanted at age 15 months, nine months younger than the FDA guidelines of age two at the time and 16 months younger than Rachel was when she received her CI. Both girls were then bilaterally implanted in 2004, something we quickly learned the advantage of thanks to other Cicircle parents.

Posted by Melissa