Parent Advocate Joins State Champions
Melissa K. Chaikof
In 1987, when our first child was born, my husband Elliot and I had no reason to suspect any problems. However, she wasn’t even a week old when I began noticing that she did not startle. Although I voiced my concern at our initial visit with her pediatrician, he dismissed it, telling me I was “an overly anxious new mother who does not understand how newborns react to sound.” When I insisted at her next visit, he referred us for testing, which confirmed our fear. Our daughter had a profound hearing loss. He then became concerned about cerebral palsy, because she also had low muscle tone. Fortunately, that concern proved unfounded, although her gross motor milestones were all late.
Through family connections, we learned of the Auditory-Verbal Approach, which focuses on teaching children who are deaf to use their residual hearing to learn to listen and talk. We opted for powerful hearing aids, which were large, awkward body aids at the time with big buttons sticking out of her ears, and were very happy when, at ten-months of age, she was able to switch to regular behind-the-ear hearing aids. Despite the powerful signal from her aids, though, our daughter did not respond to any sound.
In the summer of 1989, while talking on the phone to an Auditory-Verbal Therapist (AVT) in Canada, our AVT learned about the cochlear implant. While we had heard of it, our audiologist at home in Boston had told us it was something to keep our eye on in the distant future. This AVT, though, told ours that she had a child who also had no residual hearing, and her parents had taken her to New York University for a cochlear implant. This was a year before the FDA approved cochlear implants for children age two and older, and also before the internet. Thus, information was not readily available. Armed with contact information for the team at NYU, though, I called, and we set up an appointment.
In the fall of 1989, we visited NYU and what was known at the time as the League for the Hard of Hearing. The team identified our daughter as a candidate for a CI, although they told us they could not promise that she would hear more than environmental sounds. However, we were bowled over when we met a child at the League who was two years older than our daughter and had had a CI for about a year-and-a-half. She was hearing and speaking like a typical four-year-old. We left New York with renewed hope and an appointment for surgery two months later.
Compared to today, where CI surgery is outpatient, our daughter’s surgery took over four hours, and she was in the hospital for four nights. A month later, we went for her initial stim, which at that time took three days. I will never forget that first day. Each time an electrode was stimulated, she would cry. We were thrilled because we knew it meant she was hearing.
From that point on, we never looked back. Our daughter began to show us that she was hearing two weeks after her initial stim. Two months later, she found her voice and began to try to talk, taking words that she had learned via lipreading and transferring them to the auditory through her newfound hearing. She attended a mainstream preschool and began to pick up language from the other children, coming home with expressions that I knew she could only have learned through hearing them.
In 1991, our son was born, and he had normal hearing. The professionals had told us our daughter’s deafness was likely due to a virus I had had during pregnancy, and we were eager to believe that theory. However, in 1995, our third child was born also profoundly deaf, and so we knew we were dealing with genetic deafness, although genetic testing came up empty. She also shared her older sister’s low muscle tone and gross motor delays.
Although the FDA approved pediatric cochlear implants in 1990, we did not want to wait until the then approved age of two. While our older daughter was doing beautifully, she still had a language delay. We made the trip back to NYU in search of an earlier surgery, hoping for 18 months. We were thrilled when our surgeon said he would do it the next month when our daughter was only 15-months-old, making her the youngest CI recipient in the U.S. at that time. The difference that earlier implant made for her was exponential. By age six, she completed Auditory-Verbal therapy with language that tested age level to two years above.
Cochlear implants made an immeasurable difference in our daughters’ lives. Both were mainstreamed in school all the way through, learning at the same pace as their peers with normal hearing. Our older daughter studied French and excelled, winning a state-wide spoken foreign language award in high school. Later, it was her French skills that helped earn her a place in Cameroon in the Peace Corps, where she also had to use her listening and speaking skills to learn Pidgin English in order to communicate with the natives. My younger daughter has become an advocate for CIs, listening and spoken language, and for all with disabilities, working to level the playing field.
In 2006, we came to appreciate our girls’ ability to hear and speak with their CIs even more when, during a routine annual eye exam, we finally learned the cause of their deafness, Usher Syndrome. This diagnosis also explained their low muscle tone as babies and poor balance because Usher Syndrome type 1 also affects the vestibular system. Most significantly, though, it meant that they would both slowly lose their vision because retinitis pigmentosa is part of Usher Syndrome. We are so thankful that we had chosen not just cochlear implants for our girls at a time when they were not the standard of care, but also that we had taught them to use the hearing gained from their CIs to the fullest extent possible so that they would not have a dual sensory loss. I often say that I would sleep better at night if I knew that my girls would always see as well as they hear.
Over the years, by necessity, I became a skilled advocate for my daughters, battling insurance companies and school systems not just for services that they needed but also for their right to communicate through listening and spoken language, a choice that, after much research, my husband and I made for them believing it would work best for our family and a choice that my girls, now adults, are very grateful we made for them. While in more recent years my efforts have taken on a new direction, fundraising for Usher Syndrome research, I recently re-entered the advocacy arena for parents to have the right to make an educated decision about communication options for their children when I became aware of the LEAD-K effort, a movement by some in the Deaf culture to ensure via a law in each state that all babies born deaf be strongly encouraged to learn American Sign Language. Parents should not be pressured on the communication model they wish to pursue with their child; rather our institutions should support parent choice and services to be provided should respect the model parents are pursuing with their chosen educational and medical teams. Thus, I was very pleased to find that the ACI Alliance has organized state groups to advocate for parental rights and parental choice. I have joined this effort and am so very grateful that the organization has taken the lead to ensure that all babies born deaf today have the same options that my girls had when we were first starting on this journey.
A FAMILY PERSPECTIVE
Advocating for Your Cochlear Implant Child: It’s not just about the IEP
Barbara T. Mellert, MPH, Academic Technology Consulting, Dartmouth College
When our older son, Thom, was diagnosed with severe hearing loss and on his heels, four months later, his younger brother, Sam, diagnosed with profound hearing loss, many things went through my mind. Questions about "would they be okay," questions about schooling and friends and resources. As hearing parents, I'm sure all of us who have kids with hearing loss can relate. What I didn't realize but learned over time is that I would need to be my children's best advocate in all ways—educationally, socially, and then I learned I would also need to become an expert in All Things Insurance.
Our first insurance challenge came early on, when our sons were still using hearing aids. It's quite a shock to find out your children are deaf, then to find out how expensive hearing aids are and that usually, insurance doesn't cover them at all. We worked with the boys’ pediatrician and their audiologist to petition our health insurance company to create a medical necessity exception and we ultimately prevailed. I learned “always ask” and to keep asking. It’s proved to be successful for our family.
As a young teen, Thom lost more hearing and we made the decision to move to cochlear implants for him. For Thom, the approval process was mostly smooth sailing. Six months later, our younger son, who saw how well his older brother was doing with his new CI, also had surgery after two denials by insurance. The third time was the charm for Sam. The first two reviews that were denied were conducted by a family physician and then an emergency room physician. Finally, our insurance at the time had an ENT review Sam’s records and he was ultimately approved for surgery. Interestingly, the following year when both boys had their second CI surgeries to become bilaterally implanted, insurance approval was quite easy.
I’m writing a separate article for ACI Alliance regarding insurance coverage of processors and parts. That will appear in the future. I discovered this page that’s part of the ACI Alliance website to be incredibly helpful: http://www.acialliance.org/page/Insurance
An interesting thing about advocacy is how it changes as our kids get older. When they are young, as parents it’s our job. But by the time our boys entered middle school, they were attending their own IEP or 504 meetings. I should note that often they were the only students in their school with hearing loss and they were always the only one in their class. We always felt lucky if a teacher who taught Thom then had Sam two years later since it meant they had some experience working with a student with hearing loss.
We built into their educational plans meeting with their teachers as a group just before school started each year and both boys ran their own meetings. They would begin talking a bit about their audiological history—their story is a bit different in that neither was the beneficiary of newborn hearing screening. (It wasn’t available in Louisiana when Thom was born and also wasn’t available in New Hampshire when Sam was born.) Consequently, they were diagnosed and aided relatively late. Thom was 3-1/2 when he received his first set of hearing aids; Sam was 15 months. And then of course the big change from hearing aids to cochlear implants as young teenagers. I’ll never forget when Sam was in 8th grade and conducting his intro meeting with all his teachers. After talking about his hearing history, he transitioned to academics with the statement “And now I’m going to tell you what you need to do for me so I can be successful in your class.” His English teacher that year was also the coach of the high school football team. I’ll never forget the look on his face when Sam said that—it was a true “wow” moment. The meeting was so helpful in opening up an easy dialogue between our sons and their teachers. Sam’s social studies teacher told Sam after the meeting “You know I want to do the right thing but may make mistakes so please let me know if I do”.
The other thing that was interesting in hindsight is how my role as advocate was first appreciated and admired “you are such a great advocate for your sons” but by the time they entered high school and beyond, the expectation was very clear that my sons would advocate for themselves. It was at first hard for me knowing when to stay back and when to step in. Self-advocacy is a skill that has served them well into college and beyond. I appreciated their school’s emphasis on advocacy—it was something that was expected of all students at the school.
Parents today are lucky in many ways that information is readily available via many formats. On the other hand, sometimes there’s almost too much information with the very real need to sift through what’s important and what’s accurate. I only wish the ACI Alliance was available when our boys were young. There’s so much valuable and valid information and assistance. The wonderful thing too is there’s something for everyone. There’s so much information for parents who are new to this journey including information on education and insurance. My young adult sons benefit from the ACI Alliance as well. When you seek information from the ACI Alliance, you know it’s fact-based and accurate. When our sons were young, we started a parent support group at our local hospital. It was sponsored by Clarke School for the Deaf in Northampton MA and Dartmouth-Hitchcock Medical Center Audiology. We’re in a fairly rural area in west-central New Hampshire (on the border of Vermont) so most parents and kids in the group were often the only kids in their town with hearing loss. With some online friends (who I’ve yet to meet in real life!), we started the Listen-up listserv which brought parents of kids with hearing loss together.
Our sons are doing well thanks to the village of amazing professionals and parents who’ve been there, done that. I love the words of Mr. Rogers “look for the helpers”.
Left to right: Thom, Sam, Hugh and Barbara Mellert atop the Empire State building, NY