I spent the first 24 hours after receiving the definitive diagnosis of Rachel’s deafness crying. We were living in Boston and had no family in town, and so I mostly spent those 24 hours on the phone crying. We knew nothing of deafness. We wondered about whether Rachel would have to attend a special school, whether she’d ever be able to speak, where she’d find friends, and we thought about all the joys that hearing brought to our lives that we took for granted and were sad for what she’d be missing.
Then, I made the first connection that helped me immeasurably. My father was the lower school principal at a private school in Baltimore. Unbeknownst to me, he had a deaf student in his school. I think she was in 5th grade at that time. Her parents were grateful to my father for giving their daughter a chance, and, after getting my permission, he called them for me. I was on the phone with the mother , Esther, within an hour. She told me about the oral approach and about the A.G. Bell Association for the Deaf, which, at that time, gave parents a free first year of membership. When we went to Baltimore to visit my parents a few weeks later, she had us over to her house along with a friend of hers who also had a daughter who was deaf and oral. She had reams of information ready for me, and having someone guide me through the early stages of learning about deafness was both invaluable and comforting. This mother became my mentor. I kept in close touch with her in those early years.
Even though we were convinced by speaking to Esther that we were on the right track with the oral approach, we still explored all of our options. We contacted the Massachusetts Association for the Deaf and received names of a few families in the area who were using the various approaches. We spoke at length with two families, one that was oral whose ten-year-old son was doing beautifully and could even carry on a conversation while riding his bike, and one whose daughter had had meningitis at age three so had had speech and language already. However, the family decided that hearing aids were a pain, got rid of them, and committed to using ASL. Their daughter was now eight and had lost all of her spoken language. To us, there was no comparison in which child we wanted Rachel to be like. We wanted her to have the ease of communication that the boy did.
This was also in the pre-internet days. Thus, information wasn’t as readily available as it is for parents today. Instead, I went to the library and copies reams of articles on deaf children and language, many of which I still have in my file today. I also discovered the A.G. Bell Association’s book catalog and started ordering and reading books which still line my shelf today, books by Daniel Ling and Arthur Boothroyd and my early “bible,” Learning to Listen. Later, I added books by Warren Estabrooks. We also contacted the John Tracy Clinic and began their correspondence course.
When Rachel was three months old, she received her first hearing aid. It looked something like this:
The buttons attached to earmolds that stuck out of her ear. When she was four months old, she got one for her other ear. I sewed pockets into onesie t-shirts to hold them. The difficult part, though, was that the microphone was not on the earpiece as with today’s body worn cochlear implant processors. Instead, it was on the box. So, keeping the aids under her clothes was not a good idea because the sound would then become mufflied. Here is a photo of Rachel at about 6-8 months old wearing her hearing aids. While we got used to them, I have to admit that it was difficult for me to take her out in public with these big things, and I always had the onesie with the boxes inside her clothes when I took her out. Overalls worked well because then the tops of the boxes, where the microphones were, were not covered.
When Rachel was four months old, we started out at a program that was overseen by a professor at a graduate school of Communication Disorders. What benefitted me the most in that program was the parent group the professor had set up once a week. The children stayed in the nursery while we all had a chance to talk. Being able to share my feelings with other parents who understood how I was feeling was invaluable in helping me get past the grieving process and on to focusing all of my efforts on helping Rachel. To this day, almost 22 years later, I am still in touch with one of those mothers.
When Rachel was five months old, I returned to work part-time. I remembered Ralph Guertin, the oral deaf man whom I’d interviewed for a job in my department when I was pregnant with Rachel. He had not gotten a job in my department, but I looked him up in the company directory and saw that he was now working in another department. I walked over to his building one day shortly after returning to work. He remembered me and was very surprised to learn that I’d had a deaf baby. He told me all about the Clarke School in Northampton and how happy he had been there. A few weeks later, he came to my office and asked me to join him during lunch for a disability fair taking place at our company. He took me to a table where a teenage girl was with her mother. The girl was deaf and had gone for five years to Clarke. I spoke with her and her mother at length and left very encouraged.
Elliot and I drove two hours to Northampton and visited the Clarke School with Rachel when she was six months old. While we were impressed with the facilities and with the professionals there, we left discouraged by the students. At that time, Clarke specialized in very profoundly to totally deaf children. They were all tethered to a center bank by FM cables, and most had very poor speech. In addition, we sat in on a class of 15-year-olds and were very discouraged by the low academic level. This was not the future that we wanted for Rachel. We wanted her to be able to hear and speak so that she could communicate with the entire world and not just a small portion, but, at the same time, we didn’t want her to struggle so greatly to communicate.
When Rachel was 10 months old, we switched hospitals to Boston Children’s Hospital, and she got her first pair of ear level hearing aids. I was so happy to get rid of the big, clunky body worn aids. At the same appointment, the audiologist got her first accurate hearing test results through behavioral testing, and these results showed that Rachel had more hearing than we’d initially thought. Where the ABR had shown no hearing above 1000 hertz, this showed hearing across all the frequencies, albeit at the level of a profound loss from 1000 hertz on.
Unfortunately, unbeknownst to us at the time, Rachel began to gradually lose her residual hearing right after this appointment. We noticed her diminishing response to sound but thought that it might be because she was experiencing recurring middle ear infections. The ENT agreed and put tubes in her ears. The ear infections stopped, but her hearing did not improve.
One other thing worth mentioning is that Rachel was very late sitting and walking. It went hand in hand with what her pediatrician had observed about her head control. She didn’t sit until age 10 months and walk until age 21 months. Once she started walking, her balance was very poor. We now know that this is par for the course for deaf children whose vestibular system is also affected, but none of the professionals knew that then. We even visited a new pediatric neurologist who was supposed to be world renown, and he proclaimed his theory that a flu-like virus I had had five months into my pregnancy had resulted both in Rachel’s deafness and in an “isolated insult to her central nervous system,” resulting in her gross motor delays.
As good as the parent group at the graduate school was for me, the part of the program that was for Rachel was not overly beneficial. It was run by grad students, some of whom wanted to be there and others who didn’t but had to be there because they needed the credit. We were very fortunate to have one of the best of the group of grad students, Shari. Shari was very bright and very eager to learn and to help Rachel. She was outgoing, animated and full of energy. We even started using her as a babysitter because she was so wonderful with Rachel. That summer, though, we no longer had Shari. Instead, we had another student who was not enthusiastic, who had no idea what to do to help Rachel, and who had no energy. I became anxious about Rachel losing valuable time.
We decided that we needed to find a better program for Rachel and, once again, I went back to my mentor. I was speaking to Esther on the phone, and she said to me, “If I had to do it all over again, I’d go the Beebe Center.” She went on to say that she had met children at an AG Bell convention who were learning language through the Auditory-Verbal approach and that she was incredibly impressed by them. So, I got on the phone to the Beebe Center in Easton, Pennsylvania. At the time, their Larry Jarret House program was a program for families from out of town to come learn about the Auditory-Verbal approach and immerse themselves in it for a week. The center was in an old house with the therapy rooms and offices on the first floor and the apartment for the Jarret House on the second. This was in 1988, and, since there were very few Auditory-Verbal therapists and centers then, this program was greatly in demand with a waiting list as long as five months. However, we got lucky as they had just had a cancellation for the next month, September. So, off Rachel and I went for a week, accompanied initially for the first three days by my parents and then by Elliot for the last three.
The Jarret House program was amazing. Rachel had an hour of formal therapy every morning, including with Helen Beebe herself, one of the founders of the Auditory-Verbal approach and a living legend at the time. We were fortunate to have that time with her as she passed away about a year later. During the rest of the day, we would watch other families’ therapy sessions, speak with other parents, even visiting one family in their home, and watching informative videos. During three evenings, one of their therapists visited us in the evening and showed us how we could incorporate language learning into our everyday lives. I remember her asking me if we had a dishwasher, to which I replied yes. She told me I couldn’t use it all the time, and then she proceeded to demonstrate for me how to stand Rachel up on a step ladder and have her help me wash dishes, all the while feeding in language about washing and soap bubbles and hot and cold, wet and dry, etc.
After that week was over, I was supposed to go to Philadelphia with Rachel to stay with my college roommate for the weekend. However, I was so eager to get started that I cancelled that and returned home with Elliot, running out the very next day to an educational toy store to get materials so that I could get started on working with Rachel at home. We also left the program at the graduate school and began working with Lea Watson at the Auditory-Verbal Communication Center in Gloucester, Massachusetts, for an hour twice a week. It was a 54 mile drive each way that took me a full hour, but I was so committed to the Auditory-Verbal approach after seeing how well the kids were doing with it that I was willing to do whatever it took.
One of the early activities involved using toy animals and vehicles to teach Rachel the “learning to listen sounds.” These sounds comprise the full range of speech frequencies, and, if Rachel could learn to discriminate those, then she could learn to discriminate speech. One of those sounds was, “ahhh,” which we said while flying a toy airplane. I remember how excited I was the day Rachel picked up the airplane and said, “ahhh.” I even called the Beebe Center to tell them. However, when Rachel was 18 months old, one day she picked up the airplane and mouthed “ahhh” with no voice.
It was around this time that we began to experience professionals giving us their unsolicited opinions about our communication choices for Rachel. Rachel was in a daycare/preschool the three days a week that I worked. After we’d been there a few months, the director and school social worker called Elliot and me in for a meeting. They informed us that we should be signing with Rachel, that they had already spoken to their teachers and that they were willing to learn some sign. We were angry but calmly explained that we had done our research and made an educated decision and that we had chosen not to sign with Rachel and didn’t want anyone signing with her. They accepted our choice because they had to, but they continued to badger us throughout Rachel’s time there. In addition, we experienced a similar situation with some of the professionals at Boston Children’s Hospital, Rachel’s ENT in particular, who let me know at almost every appointment that she was aggravated with our choice and even called the Chief of ENT in one day during Rachel’s appointment, and he proceeded to lecture and argue with me for a half hour. He told me that Rachel would never be able to learn to speak English well.
Lea was having difficulty getting Rachel to demonstrate any consistent response to sound or any indication that she was comprehending any spoken language through her hearing. She referred us to one of the only Auditory-Verbal audiologists in the country, Judith Marlowe, in Winter Park, Florida. She had seen other students of Lea and had made them new earmolds that resulted in a 10+ decibel gain in their hearing. We had three days booked with Dr. Marlowe. However, after the first day, she told us that Rachel appeared to have absolutely no residual hearing and that there was nothing she could do to help her hear more. She gave us literature on a vibrotactile aid from a company that, coincidentally, was located about 20 minutes away from where we lived, and on the cochlear implant. However, she told us that results from a vibrotactile aid were about equivalent to what they were seeing from the cochlear implant. The cochlear implant she was referring to, though, was the early single channel implant.
We did not have much money then. My husband was still in his surgical training, and I was working three days, but between paying for daycare plus for Auditory-Verbal therapy, which our insurance refused to cover, things were very tight. However, we needed to try that vibrotactile aid, and so $1000 later, Rachel was wearing a box with two wires that ended with disks that we taped each day to her chest. One vibrated for low frequency sounds and the other for high frequency sounds. At the very least, we hoped it would make Rachel aware that people were using their voices because she continued to speak by mouthing words with no voice. The vibrotactile aid proved to be totally useless. Rachel did not protest wearing it, but neither did she pay any attention to it.
After returning from Florida, we spoke with Lea. Her first reaction was that we needed to find another approach to use with Rachel, that she clearly could not be Auditory-Verbal without the auditory part. The approach is based on the premise that deaf children can learn language naturally through their hearing if they are trained to use their residual hearing to the maximum. At the time, that meant hearing obtained through hearing aids, but, even with the most powerful set of hearing aids, Rachel could hear nothing. We found another therapist who taught spoken language in conjunction with sign, and we were set to meet her. Then we returned to Lea, and she said that she had been thinking about us and was reluctant to let us go because we were one of the most Auditory-Verbal families she knew even though Rachel couldn’t hear. She wanted to help us, and she decided that she would use the same types of activities that she did with her other students but would incorporate lipreading and other visual and tactile cues into her lessons.
We started holding everything we talked about up to our mouths. Rachel proved to have a gift for lipreading, and she very quickly developed a receptive vocabulary list of 100 words. She would also vocalize a few words, although most she still mouthed. We were beginning to get discouraged and were beginning to think we’d have to add some sign language. Then Lea made a connection for us that changed Rachel’s and our lives.