MUSIC TO MY EARS

By “C. Saphir

Courtesy of Mishpacha Magazine

“Hi, Mommy!”

It was my oldest daughter, Avigail, on the line, calling from her seminary in Israel. “Hi, Avigail, what’s up?”

“Oh, Ma, we have this huge test tomorrow, and an impossible report due next week, and we just came back from this exhausting tiyul – it was really fun, but now I’m so tired, I don’t know how I’m going to manage everything. Oh, and did I tell you that my roommate’s brother got engaged?”

Music to my ears. Here I was, talking to my daughter across the ocean, and every word, every letter, was perfectly clear. She didn’t ask me to repeat myself once, and I didn’t have to ask her to repeat herself, either.

It was a miracle. A miracle that came with a lot of hard work.

When Avigail was about half a year old, she was sitting on the floor with some toys, when the front door suddenly slammed shut. I jumped. But Avigail showed no sign of being startled. She continued playing happily with her toys.

That’s weird, I thought. I sat down behind her on the floor and snapped my fingers. She didn’t budge. I moved to her side and started clapping my hands. She didn’t turn her face toward me, or even blink.

Later, when she was napping, I started to talk right beside her. She didn’t even stir. I talked louder. Finally, I shouted her name. “Avigail!” She slumbered peacefully on.

I had an appointment scheduled for a well-baby checkup a week or two later, and when I went for the appointment, I mentioned to the nurse that I was concerned about Avigail’s hearing. She chuckled. “Oh, you first-time mothers,” she said. “Always worried about every little thing. Here, I’ll show you that she hears.” She picked up a rattle and shook it right in front of Avigail’s face. Avigail lunge fro it “See? She hears fine!”

That was a vision test, not a hearing test, I thought. Avigail saw the rattle, she didn’t hear it.

I took Avigail to an ear, nose, and throat specialist. He didn’t accuse me of being a hypochondriac first-time mother. “This child does not hear.” He said.

I went with my husband, Yochanan, to have Avigail’s hearing tested. The result: She had 90-100-decibel hearing loss, otherwise known as profound deafness. We were told to get her hearing aids.

My first reaction was: It’s not true. It’s impossible! I screamed inwardly. No one in my family or Yochanan’s family has any hearing problems. I’m immunized against rubella. There must be some mistake.

The wall of denial held up for a couple of days, only to be washed away by a wave of grief. I remember nursing the seven-month-old Avigail with tears flowing down my face. “What an adorable baby you are,” I whispered to her. “And now they’re going to make you ugly with hearing aids.”

I cried for three days straight, feeling that this was the end of the world. What kind of life is this child going to have? I wondered despondently. Will my other children be deaf, too? How am I going to cope? What are people going to say?

When the intensity of the grief subsided somewhat, I made an appointment to have Avigail fitted with hearing aids. And then, I started to call all my friends, relatives, an neighbors, The last thing I wanted was for people I knew to cast furtive glances at Avigail, shift awkwardly as they tried to carry on a normal conversation with me, and then call each other up and ask, ”Do you know what’s with Chaya’s baby? She’s wearing hearing aids, I think. “So I decided to preempt all this. “I just wanted to tell you that Avigail needs hearing aids,” I said matter-of-factly. “She’s going to be fine, im yertzeh Hashem.”

With those short phone calls, I neatly punctured the balloon of discomfited curiosity that usually surrounds children with impairments. Instead of wondering about Avigail, or whispering about her behind my back, people felt comfortable asking me, “So how’s she doing?”

It was the biggest favor I could have done myself. Now, I could deal with Avigail’s deafness, without feeling like the object of people’s pity.

At the time, I knew nothing about the different approaches to hearing impairments (or deafness, as the culturally deaf world prefers to deem it). So it was pure siyata d’Shmaya that the first speech-language pathologist we were referred to happened to be an AV (auditory verbal) therapist. I had never heard of AV therapy, and I could just as easily have ended up with a therapist who would have encouraged lip reading or sign language.

Auditory verbal therapy was new at the time, and was considered radical and controversial. The theory behind AV is that in order to speak properly, a child needs to learn to speak only through hearing. The therapy utilizes the little hearing the deaf child has (known as residual hearing), plus the use of amplification (through hearing aids or other devices), to teach the child to speak normally.

There are those who feel that deaf children should not be fitted with any sort of hearing aids, and should be taught to communicate without hearing, through lip-reading and sign language. We felt, however, that since Hashed provided our generation with the technology to help deaf people hear, we should not deny Avigail the opportunity to be part of the hearing community – just as we would not deprive a vision-impaired child of eyeglasses.

The primary rule that Avigail’s AV therapist taught us was that she must never see our lips when we speak to her. “Since she hears so poorly, she will naturally learn to speak by imitating the movements of your mouth,” the therapist explained. “If that happens, her speech won’t sound right.”

Since Avigail had not heard anything for the first eight months of her life, we had to talk to her constantly in order to develop her language faculties. “You need to train her to hear,” we were told. “Then, her speech will eventually come.”

Avigail’s hearing was tested over and over again, and each time her hearing aids were adjusted, until she was technically capable of hearing every possible sound and differentiating the various letters from their similar cousins – B from P, M form N, R from W, and so on.

One of the principles of AV therapy is that because deaf children hear sounds so much faintly than hearing children – even with amplification – that strong experiential associations are necessary in order to train their ears to detect certain sounds and develop language skills. Rather than point upward and say “up,” and point downward and say “down,” as one would do for a hearing child, I actually took Avigail onto the loading dock of a truck and had her ride up and down with me, all the while repeating ,”Up, down. Up, down!”

I would crawl on the floor behind Avigail and talk to her continuously. When she faced me, I’d cover my mouth and speak to her. Yochanan did the same. We also asked all of our relatives and neighbors to cover their mouths when they spoke in front of her. Any time I got a babysitter to watch her, I made sure to explain that they could only speak to Avigail from behind, or with a covered mouth.

Avigail said her first word – light (“ayt”) at the age of two.

Unbelievably, within a few short months, her speech was more or less on par with that of the average two-year-old.

Initially, we sent her to a special preschool for hearing-impaired children. With time, however, we realized that although she was receiving a great deal of professional intervention there, she was also being exposed to a peer group composed of kids whose speech was poor, or nonexistent. One day, I saw a child in the group walk over to another child and pull her by her sleeve to the window to show her something. An entire conversation took place between the two using hand motions and exaggerated body language, without a sound being uttered. This was very disturbing to me, because if anyone needed to hear language spoken properly, it was Avigail.

Another thing that disturbed me was the low expectations her teachers – all trained speech therapists – had for her. “Avigail sand ‘ambulance’ today!” the morah excitedly reported to me one day, when Avigail was about three years old.

“Really?” I asked. “How exactly did she pronounce it?”

“Amuyan,” the teacher said proudly.

I was disappointed. Avigail had missed the B, and L, and the C – not very good for a deaf child to say “amuyan,” but I didn’t want Avigail’s speech to be measured against that of other deaf children. I believed that Avigail was capable of much more, and I saw that her progress was being hampered by the fact that her teachers were too easily satisfied.

Having internalized the AV belief that the best speech therapy is hearing other people speak, we decided to have Avigail mainstreamed.

Many of the experts who were advising us at the time were vehemently opposed to this move, warning us that Avigail was too profoundly deaf to function in the area of speech and language. But we felt that the sooner we’d allow her to integrate, the better off she’d be.

When she started in a regular preschool, the only special instructions I gave the morah was to seat Avigail beside her, rather than opposite her, so that Avigail wouldn’t be able to read her lips.

In the meantime, we continued taking Avigail for speech therapy, while working with her intensively at home to get every sound exactly right. By the time she was five, the only sound she hadn’t mastered was the L. When she sang the alef-beis, she said “yamed” instead of “lamed” This was a significant speech impediment – imagine a kid saying, “I yicked a yeyyow yah-yee” instead of “I licked a yellow lolly.”

At one point, I took Avigail to meet the doctor who developed the AV method, and he actually recommended that we give up on teaching her the L sound through the AV Method, and instead go the traditional route of teaching her the mechanics of how to position her tongue and lips in order to make that sound. But after this far with AV, I wasn’t ready to give it up.

Malka, the speech therapist, was as committed to AV as we were. She put two bowls of water in front of Avigail and told her that one bowl was “ya-ya-ya” and the other was “la-la-la”. When Malka said “yard” or “yoyo” or “yak,” Avigail had to drop a marble into the “ya-ya-ya” bowl. When Malka said “lip or “land” or “lamb,” Avigail had to drop a marble into the ‘La-la-la” bowl.

Oh, how e worked on that L! And eventually, it came. Instead of introducing herself as “Avigaiyiy,” our daughter could now proudly enunciate her own name. Listening to her speak, now that she had mastered the L, you’d never know she was deaf.

Each time we took Avigail to the local hospital’s audiology clinic for testing, the doctors and technicians would shake their heads in wonder when they hear how well Avigail spoke. “She’s a miracle child!” they’d proclaim.

It was a miracle. But when the people in the clinic used the word “miracle,” they made it sound as though a bolt of lightning had struck, when in truth, it was a miracle born of years of hard work.

Ironically, Avigail’s progress sometimes worked against her. For instance, she was turned down repeatedly as candidate for cochlear implant, because her speech and language skills were too good.

“So what if her speech is good?” I argued with anyone who would listen. “Just because she speaks well doesn’t mean that she hears well. I want her to hear as well as she can.

By nature, I am a very reserved, nonconfrontational person. But in the process of helping Avigail, I had been force to learn how to advocate for her. Undaunted by the fact that she had been rejected as a candidate for implantation, I made an appointment with a veteran surgeon, and I informed him that my daughter needed a cochlear implant I wasn’t asking his opinion; I was requesting a surgery date.

The surgeon took a quick look at her file and nodded. “With hearing loss of 90-100 decibels, she definitely qualifies,” he said. “I’m looking at an operating date of June 27. Does that work for you?”

“Can I ask you a question?” This was from six-year-old Avigail. “Do you do the surgery yourself, or are you part of a team?”

The surgeon’s jaw dropped. “There is no way I’m operating on this child,” he declared. “Her pronunciation and intonation are perfect! She speaks better than my own grandchildren!”

We appealed, we begged, we pulled every string we could, but we could not get Avigail medically approved for the implant. And without approval, our insurance company would not pay for it.

I wasn’t deterred. I flew with Avigail to Europe to have the prohibitively expensive surgery done there, paying for it out of pocket, with the help of family. Sure enough, the cochlear implant was a huge boost to Avigail’s hearing. Unlike a hearing aid, which merely amplifies sound, the cochlear implant substitutes for the function of the inner ear by sending sound signals to the brain.

With the cochlear implant, Avigail was able to hear much, much better. Her teachers would wear a microphone on their clothing that transmitted their voice through an FM system directly to Avigail’s ear, with a range of 90 feet. “When I go to the bathroom, I don’t miss anything the teacher says,” she told me cheerily. “And sometimes, she forgets to turn off the mike during recess, so I can even hear what’s going on in the teacher’s room!”

Fortunately for us, Avigail’s school an teachers were very gracious and accommodating. Every year, we have the teachers training in how to use the FM system, and never once did a teacher object to using it. One of the older teachers, who had been teaching in the same classroom for 20 tears, even agreed to switch to a different classroom that was better for Avigail because it didn’t overlook the street, and therefore had less background noise. An organization that helps the hearing-impaired paid for carpets to be installed in Avigail’s classrooms, to improve the acoustics.

When dealing with a child with a disability, it’s easy to focus only on the disability, and lose sight of the whole person. We tried to see Avigail as a child with a hearing impairment, not as a hearing impairment with a child. Like every other kid, she needed chinuch, and love, and discipline, and help with her homework. More than anything, she needed the reassurance knowing that she was normal, and that there was nothing stopping her from doing the things that everyone else did.

“Mommy,” she asked me worriedly one day, when she was about ten years old, “who is going to marry me? I’m disabled!”

“Forty days before you were born, Hashem put aside a very special chassan for you,” I assured her. If my assurance rang true to her it was because I believed it wholeheartedly.

Some people will claim that Avigail a wunderkind, that she is unusually gifted, and that other deaf children cannot be expected to speak and function the way she does. To them, I say that Avigail is not an exceptionally bright child. Even children of low intelligence can speak, as long as they can hear. And today, thanks to technological and therapeutic advances, even a profoundly deaf child can be taught to hear, and therefore to speak.

Is it a miracle that Avigail can hear and speak? Yes, absolutely. Every time I have a regular phone conversation with her, I thank Hashem for this miracle, for the music that floats across the telephone wires. But what I always tell parents of hearing-impaired children is that this is a miracle that’s within reach. With siyata d’Shmaya, and lots of hard work, their ears can hear the same music that mine do.