Before I continue with Rachel’s story, though, I need to talk about her sister.
When Rachel was in first grade, we had our third child, Jessica. I had a feeling during my pregnancy that Jessica couldn’t hear, even though the “expert” neurologist had told us that Rachel’s deafness had been caused by a virus. During my pregnancy with Adam, I looked for responses to sound and noticed that he would move around when my stomach growled. In addition, although I am almost embarrassed to admit it, at about seven months into my pregnancy with Adam, I had started banging first pots and pans and then large cymbals in front of my stomach and was able most of the time to get Adam to move around. With Jessica, I could repeat none of that.
While newborn hearing screening was not yet routine in 1995 when Jessica was born, we were able to have her hearing tested before she left the hospital because we had a family history. Jessica was not yet 24 hours old when the hospital audiologist told us that she could not get any response to sound from Jessica. Rachel’s so-called “viral” hearing loss had turned out to be genetic.
So, just as Rachel was nearing the end of her Auditory-Verbal therapy, it was time for us to start over again. Unlike Rachel, Jessica never had any residual hearing. Thus, although we tried hearing aids, they proved useless except to annoy us with their feedback.
When I told Rachel after bringing Jessica home from the hospital that Jessica was deaf, she quietly said to me, “I was hoping my little sister would be deaf like me.” That was the beginning of a bond between the two girls that is still very much there today. Jessica adores and looks up to Rachel as her role model.
One thing we knew was that we didn’t want to wait until Jessica was two to get her hearing because we knew all too well how many years we had spent working with Rachel to catch up her language. Dr. Todd said that he would be willing to implant Jessica at 22 months even though the FDA guidelines at the time still specified age two. We had heard that Noel Cohen, our NYU surgeon, had implanted a 20-month-old, and so we decided to make a trip with Jessica up to NYU, hoping that he would agree to implant her at 18 months. Jessica was 14 months old at the time, and I will never forget sitting in Dr. Cohen’s office hearing him ask me, “So when do you want to do this,” to which I replied, “As soon as you are willing.” When he then asked me, “How about next month?,” I practically fell off my chair. I beamed at him and told him he had a patient. Thus, at age 15 months, Jessica became the youngest pediatric cochlear implant recipient at that time.
The early implant proved to be very beneficial for Jessica. We began our weekly sessions with Mary Ann, and Jessica’s receptive language progressed very quickly so that, by age three, it was age appropriate. However, she was barely talking. Because we were experienced Auditory-Verbal parents at that point, we knew that something was not right. In particular, we noticed that, while Jessica could spontaneously make certain sounds, she could not produce them voluntarily when we asked her to repeat them. For example, she would point to a tree and say “ee” but could not see “ee” if we asked her to imitate it. We took her to a pediatric neurologist who diagnosed her with speech apraxia, a condition where the signal from the brain to the mouth gets jumbled so that the mouth cannot figure out how to form the sounds based on what the ear, or in Jessica’s case, her CI is sending to her brain. Mary Ann referred us to an oral motor therapist who specialized in apraxia, Sharon Wexler. Sharon proved to be yet another incredible professional who came into our lives. Within two months of working with Sharon, Jessica began to talk. Within five months, her expressive language jumped a year. It was as if all of that language had been inside of her waiting to come out. At age six, Jessica “graduated” from Auditory-Verbal therapy with language that tested age level to two years above in all areas.
After seeing Rachel struggle with her CI failures, we also opted to have Jessica bilaterally implanted. Jessica heard incredibly well with her one CI, which was a good thing because, no matter how hard I actually tried to teach her, she could not lipread at all, not even a single word. We felt that she needed a “spare ear” so that she would never be left without hearing. Jessica was nine years old when she received her bilateral CI about two months after Rachel received hers. Jessica had the advantage of being younger than Rachel, and she made rapid progress with her new ear. After about five months she was testing 60% auditory-only comprehension in that ear alone. After about two years, her new ear was indistinguishable from her original ear. According to the research on bilateral implants in children, Jessica was beyond the range of time between implants where this should have been possible, which just goes to show that researchers don’t know everything! The icing on the cake for Jessica was that her hearing in background noise improved. Normal hearing for testing in extreme noise is considered to be anything 80% or above. Jessica tests at 84%. In addition, she scores 100% on the most difficult test of auditory-only comprehension that involves her listening to and repeating single syllable words with no context and no visual cues.
Like Rachel, Jessica had gross motor delays. She was even later than Rachel, not sitting until 11 months and not walking well until 2 years 3 months. Between that and her expressive language delay, we opted to start her in preschool a year late and put her in with a class of children a year younger. While she started preschool at Rachel’s and Adam’s old preschool, because Adam was at the private school where Rachel had been, we opted to switch Jessica there for her last year of preschool so that she could continue on to kindergarten there. Jessica stayed at the school through first grade. The teachers were wonderful and caring, but Jessica has some mild learning disabilities unrelated to her hearing that run in Elliot’s family. Thus, like Rachel, she needed more resource help than the private school could provide. We were very fortunate in that, for that next year, our county was starting a program in a nearby very good elementary school that was just like the program Rachel had attended for middle school. For the next three years in grades two through four, Jessica attended this public school. At the same time, I continued to take her to her resource teacher at the private school once a week for tutoring with the goal of keeping her on track to where the students were in her grade there so that she could eventually return to the school.
In fifth grade, Jessica returned to the private school, and she has thrived there. She is a very hard worker with a strong desire to do well. She still works with an excellent resource teacher, but now the time that she gets in resource is sufficient. She is in seventh grade, and the school ends after eighth grade. So, once again, we’ll soon be looking at choosing a high school.
One of Jessica’s favorite activities is drama. She recently had her first major lead in a school play, Cheaper by the Dozen. She was wonderful, having memorized all her lines and reciting them with emotion.