In 1991, Elliot finished his surgical residency in Boston. He had decided to do a fellowship in vascular surgery. He created his list of the best programs, and I created mine of the best Auditory-Verbal programs and therapists. They corresponded for Atlanta, Boston and Texas. Thus, in June of 1991, we said goodbye to Boston after nine years and moved to Atlanta, initially just for the one year of his fellowship. At this point, we had two children. Our son Adam, who was born with normal hearing, was five months old when we moved to Atlanta, and we decided that I would take the year off of work and be a stay-at-home mom.
We began working with Mary Ann Costin at the Auditory- Verbal Center in Atlanta, then known as the Auditory Education Center (AEC). Mary Ann evaluated Rachel, identified the areas of language we needed to focus on next, and began piling the work on me, which was a good thing! Rather than daycare, Rachel attended a regular preschool five mornings a week, leaving my mornings free to focus on Adam and my afternoons free while he napped to focus on working with Rachel. During that year, I saw how greatly Rachel’s language thrived from having me have so much more time to spend with her. Thus, after we ended up deciding to settle in Atlanta, I still opted not to return to work right away. Rachel’s language, while progressing steadily, was still delayed by about two years, which made sense since she had not heard anything until she was two years eight months old.
As clearly as I remember the early, more difficult days, much of the rest of Rachel’s childhood in terms of her progress with spoken language is more blurry. It was not as if I can point to a time when we got “there.” Her progress was always even and steady, some language concepts coming more readily and others taking more work. I know that past tenses, pronouns and articles were harder concepts for her. Mary Ann was very organized in her approach, and, over the years, took Rachel through multiple areas of vocabulary and language and cognitive concepts. She worked in thematic units, which served not just to encompass large areas of focused vocabulary but also to keep the therapy fun and interesting by focusing on a new unit once every month or so. The thematic units included the zoo, the farm, the circus, the beach, school, the house, including each room, each of the seasons, holidays, feelings and emotions, children’s literature and more. For each thematic unit, Mary Ann would spend hours putting together a scene that would sit on a board on the table. Rachel would walk into the therapy room very eager to get started when she would see the circus, farm, etc on the table all set up to play with. Mary Ann also used an interdisciplinary approach, including tasks and games to work on auditory sequential memory, speech, and even language concepts such as pronouns using the same props from the thematic unit.
We opted to keep Rachel in preschool an extra year to give her more time to close her language gap. When she entered kindergarten in 1993, she was fully mainstreamed with no special education and did very well, including socially, making friends very quickly.
When she was six years old, the Auditory-Verbal Center passed out entry forms for the poster child for Better Hearing and Speech Month, an annual awareness event held May of every year. Much to our surprise, Rachel won that year. Much excitement followed. The spokesperson that year was jazz musician Lionel Hampton, and we went with Rachel to New York to take the photo for the poster and to record her speaking for a radio public service announcement. Then, in May, we all went to Washington, D.C., to participate in the Better Hearing and Speech Month festivities.
Better Hearing and Speech Month 1994 also marked the beginning of my time as an advocate for cochlear implants and Auditory-Verbal therapy. The editor of Contact, the publication of Cochlear Implant Club International (CICI), asked me to write an article about our experiences. After that, he asked me to write more articles and eventually to be an associate editor. It was a great experience for me, and I continued it for six years before I finally returned to work part-time.
In first grade, Rachel’s teacher taught phonics through weekly spelling lists. She would give the weekly spelling test while walking around the room. The early lists were based on phonetic chunks, such as “at” words or “et” words, which meant that her list would consist of words such as mat, bat, pat, sat, rat. While Rachel could easily hear the difference in those words with someone nearby, with her teacher walking around her classroom of about 25 children, it became very difficult for her. Even though she didn’t have an individualized education plan (IEP), her teacher was more than willing to help her out, and so she had her teacher’s aide give Rachel the spelling test one-on-one each week in the cafeteria.
Rachel has always been a very focused, determined and motivated student. Thus, we worked very hard with her throughout elementary school, both on her schoolwork and her continuing Auditory-Verbal therapy. She continued to go to therapy once a week through second grade, and then in third grade we dropped to once a month. At the end of third grade, she “graduated” from Auditory-Verbal therapy.
Our public elementary school began to go downhill. Thus, for fourth grade, we pulled Rachel out of public school and enrolled her in a wonderful private school. Over the course of the year, Rachel began to have difficulty with reading comprehension. Her school offered resource help, and we opted to begin having Rachel work for about 30 minutes a day with a resource teacher to work on vocabulary and reading comprehension. This continued through fifth grade, and, while Rachel could have remained at the school for middle school, we felt that some more intensive resource help could help her finally close the remainder of her language gap. However, the only place she could get that while still attending a mainstream school was in public school, and our public middle school was even worse that our elementary school. We decided to look into it anyway, and the public school tested Rachel. According to her testing results, she was not behind academically and so did not qualify for special ed. So, we began talking to the resource teacher at her private school about making things work there for the following year. Then, I received a phone call from a woman who said that she was the hearing impaired resource teacher for our county and had been given our name and contact information. I was confused because our local school had already told us that Rachel did not qualify for special ed. However, this woman explained that they turned Rachel over to her because Rachel did qualify for the hearing impaired program, and I had a choice of either having her go to our home school to work with Rachel or having Rachel go to her school. Her school happened to be an outstanding middle school and was located only eight miles from our house, and so we seized the opportunity.
While Rachel was not happy with our decision initially because she loved her private school, it proved to be one of the best moves we made for her. Rachel was very fortunate her first year in her new school to have an incredible group of teachers. In addition, her resource teacher also proved to be excellent and very dedicated. Rachel worked with her one-on-one for sixth and seventh grades for reading and language arts, which meant that she got intensive resource help for 90 minutes a day. Those two years proved to be very beneficial to her, and by eighth grade she was able to return to the regular classroom with monitoring by the resource teacher. In addition, she found a great group of friends at that middle school and so was very happy socially.
Middle school also marked the beginning of Rachel’s awareness of her role as one of the earliest pediatric cochlear implant recipients and her decision to assume the role of advocate. For her birthday, Mary Ann had given Rachel a gift certificate to Barnes and Noble. Rachel used it to buy herself the book, “Web Design for Dummies.” When Rachel was in eighth grade, she used this book to create the first iteration of her website, www.cochlearimplantonline.com. She entered her website in her school’s technology fair and went on to win not just first place at the school level but also first place at the county and then state level. By that time, Mary Ann had become like a member of our family, and she accompanied us to Macon, Georgia, and so was there to cheer Rachel on when she won the statewide award.
For high school, we were fortunate that our local school had the arts magnet program for our county. Rachel had always been a very gifted artist, and so this program was a perfect fit for her. Returning to school in district was also a welcome change. Rachel thrived in high school, getting very involved and excelling academically. Her school would give out VIP awards at the end of each year. Each teacher was allowed to give out only five. Throughout her time in high school, Rachel won 12 of these awards, with at least two every year. She also became involved in filmmaking, and won her high school film festival’s awards for best documentary and best overall film two years in a row. In ninth grade, her film was about the cochlear implant. In tenth grade, it was about the daughter of a friend of mine, a remarkable little girl who not only hears with a cochlear implant but who also has physical disabilities but who leads a remarkably upbeat life.
The one downside to high school, or I should actually say two downsides, were Rachel’s cochlear implant failures. One morning in the spring of her ninth grade year, she came to us very agitated, saying that she had put on her processor but was only hearing loud, painful clashing sounds. I immediately took out her spare processor, but when she put it on, she burst into tears. Fortunately, I had the audiologist’s home phone number. I called her, and she told us to meet her at her office with Rachel at 8:00 a.m. It didn’t take her long to confirm what we already suspected, that Rachel’s internal implant had failed. While we felt as if the NYU cochlear implant team was almost like family, we had stopped traveling there for mappings when Rachel was about six years old when a cochlear implant program began at our local children’s hospital, and an experienced pediatric cochlear implant audiologist from the House Ear Institute began mapping the children implanted locally. One of our main concerns was to have Rachel reimplanted as quickly as possible, and, besides the logistics of traveling back and forth to New York, we also knew that getting insurance approval to return to New York would delay scheduling Rachel’s surgery. The surgeon in Altanta, Wendell Todd, was wonderful and worked Rachel’s surgery in for six days later.
Rachel received a Nucleus 24 Contour, which meant a technology upgrade, in March 2003. We had been warned by other parents whose children had had to be reimplanted that the road to returning to her previous level of comprehension would not be immediate. Thus, we tried to keep our expectations low. Rachel had some auditory comprehension immediately, and, with her excellent lipreading skills, the combination meant that she could function well in most situations, although not on the phone. Her school provided her with a CART reporter for the duration of the school year, which also helped a great deal.
It took Rachel about ten months to attain a level of auditory comprehension comparable to what she’d had with her Nucleus 22. Unfortunately, she only got to enjoy that for three weeks. One morning, I received a phone call from her school. Rachel was hearing static. Would I please bring her spare processor to school. I had a bad feeling about it, although I’m sure part of that was having gone through an internal CI failure so recently. However, when Rachel put on her spare processor, we had a repeat of the previous year with her starting to cry as the spare processor did not resolve the situation. Throughout that day, occasional pops and crackles were added to the static. I called our audiologist, and we were very fortunate that the Cochlear Corporation audiologist was going to be in Atlanta that day doing integrity testing on a few other children and was able to fit Rachel in at the end. While the integrity testing did not show a problem with Rachel’s implant, because Rachel at 16 was an accurate reporter of what she was hearing, Cochlear Corporation told us to go ahead and reimplant. What happened to Rachel had less than a 1% chance of occurring. We were very upset to have Rachel go through yet another surgery, but, at the same time, we were fortunate that Cochlear Corporation was so cooperative.
We had already been planning to have Rachel bilaterally implanted that summer because research was showing the benefits of having two ears, and Rachel very much wanted to hear out of both ears. However, we didn’t want to have her have to undergo two surgeries, and thus we decided to simultaneously have her original ear reimplanted and her other ear implanted for the first time. After one very long eight hour day, Rachel had her two new implants.
We were weary at that point of adjusting to a new CI. Once again, even though she went from a Nucleus 24 to another Nucleus 24, Rachel could not hear as well with her new CI. While we did not expect her to hear clearly from her new ear, we did not expect her readjustment to take as long this time. I repeatedly took her back to her audiologist for mappings, but they didn’t help. Four months into it, I made the decision to take her up to Bill Shapiro at NYU. That proved to be one of the best decisions we could have made. Cochlear implants have two basic settings, the threshold level and comfort level. The threshold level for each electrode is the softest sound the user can hear for that electrode, and the comfort level is the loudest sound that the user can tolerate for that electrode. Bill found two problems. First, Rachel’s threshold levels were inaccurate. She could not hear any of her threshold levels. In addition, he discovered that she had something called T-tails, where as the threshold, or T, level increased, she did not immediately perceive an associated increase in loudness until the T level reached a certain point. Bill said that that first point where she perceived the increase in loudness was where her threshold levels needed to be set. He also found that her comfort levels were too low. We spent two days with Bill. The difference in Rachel’s hearing after those two days was nothing short of incredible. In the booth, her auditory comprehension jumped 20%. In everyday life, that meant the difference between struggling to hear to using her cell phone with the regular earpiece without the telecoil while walking down the noisy main hallway of her school at the end of the day and not missing a beat.
Over time, Rachel not only attained her previous level of hearing with her Nucleus 22, but, especially with her bilateral implants, she exceeded it. With bilateral implants, she enjoys music more and reports that sounds are richer and fuller. Those of us who interact with her notice that her overall clarity of hearing and distance hearing are also improved. It’s been almost five years since Rachel received her bilateral implants, and, while her hearing with her bilateral ear is not as good as with her original ear, it still continues to improve and has now reached the point that she could get by with just that ear if she had to, a comforting thought because it means that the chances of her ever going completely without hearing again are slim since it’s very unlikely that both implants would ever fail at the same time.
Another highlight of Rachel’s time in high school was French. During her IEP meeting before ninth grade, she stated that she wanted to study French. The special ed director told her no, that she felt it would be too difficult for her. I admit that I, too, was hesitant, but it was the last time that I would ever doubt Rachel’s ability. Rachel was insistent and got her way, starting French in ninth grade. She was fortunate to have a wonderful French teacher who worked with her after school once a week one-on-one for an hour of her own time on the pronunciation of the French words Rachel was learning. At the end of the semester, Rachel happily stopped by the office of the special ed director, waving her report card with her A in French. Rachel went on to excel in honors and then AP French. In addition, she participated in two exchange programs arranged by her French teacher that awakened her love of traveling, particularly to France and the French culture, while also giving her the opportunity to improve her French. Also, in eleventh grade, during awards night, Rachel was surprised and all smiles when she heard her name announced as the winner of her school’s foreign language award, an award given to one junior or senior out of about 800 students.
Rachel had always excelled in and loved art. Thus, when it came time to choose a college, she opted for the Savannah College of Art and Design (SCAD). That made the college process a very easy one for us as she visited SCAD, decided that it was the place for her, applied at the end of her junior year as they have rolling admissions, was accepted that June, and was finished with the whole process before most of her peers had even gotten started. Thus, she was able to sit back and enjoy her senior year without the added stress of the college application process.
Rachel gave us one more thrill at the end of her senior year of high school. Her school would give out all of its awards at awards night before graduation except for the three most major awards. Graduation night, with nine of us looking on and cheering, Elliot, myself, Rachel’s two siblings, both sets of grandparents and Mary Ann Costin, Rachel walked up on stage to receive her school’s Faculty Cup award, given to her for excellence in academics and community involvement. I sat back and thought to myself that we’d come to the end of our long journey, almost like climbing a very tall hill for 19 years, and that we could now sit back and enjoy the view. Unfortunately, we only got to enjoy that view for two months before we found the mountain looming in front of that hill.