The Diagnosis

Difference: 1970s

The first step to any treatment or therapy is a diagnosis, which wasn’t a strictly scientific process in the 1970s.

Bella was a lively, healthy baby, but her mother began to notice that she didn’t react to certain sounds. At her urging, Bella’s pediatrician “tested” her when she was almost two years old.

“My doctor simply snapped his fingers and watched to see if I reacted, and then insisted I was fine. My mother realized that I was reacting to the doctor’s movements,” Bella explains. When the doctor finally admitted there was an issue, Bella was fitted with bulky hearing aids and began to learn Signed English, a combination of English and sign language.

Imagine scanning a blurred, gray-scale photo that is so pixelated, all you can make out are three indistinct figures. It’s impossible to tell if the photo depicts men or women, let alone any identifying details. That’s how someone with profound hearing loss experiences the world of sound — even with hearing aids.

“I could hear when people were talking, but words were indistinguishable,” Bella explains. People with a “Helen Keller” idea of deafness are often unaware that most deaf people hear some sound. Total deafness is relatively rare, but for profound hearing loss, hearing aids grant the wearer only a fraction of normal hearing.

By the time she was five, Bella was accustomed to wearing ear molds fitted in her ear canal, with a protruding tube that fit onto the hook of hearing aids behind both ears. These allowed her to hear more than the equivalent of a motorcycle’s roar, but she still wasn’t always able to follow day-to-day conversations.

Most of Bella’s Jewish peers with hearing loss in the 80s either went to the local public school with services for deaf students, or labored to lip-read their teachers and classmates in the Jewish school. To ensure that Bella had every possible opportunity, her parents scraped together the funds to pay for a sign interpreter, someone who sat with her in class and signed all the lessons. It was an incredible gift — and Bella grabbed it with both hands, excelling academically and earning her classmates’ respect. By junior high, she was completely mainstreamed.

But the social aspect of school was still difficult for her. Bella’s teenage years were a struggle. So much of social life, so many social cues, are related to hearing. Bella had to learn — slowly and painfully — how to fit in.

When she completed high school and seminary, Bella took an in-person graphics course, where she worked twice as hard as her classmates to understand the teacher. Her talent landed her a lucrative job at a busy office, and while shidduchim were a struggle, she did get married, and raised a beautiful family.

In her early thirties, she was dissatisfied with her hearing aids, and decided to receive a cochlear implant, a technology that was becoming more and more popular. Cochlear implants carry sounds straight to the auditory nerve, bypassing the ear (see sidebar), and Bella hoped to hear. Doctors, friends, and family tried to dissuade her.

“An adult with lifelong profound hearing loss and limited auditory input may not be able to make sense of words even after surgery and intensive therapy,” says audiologist Dr. Sara Kader, AuD, CCC-A, explaining their perspective.

But Bella decided to try.

“When I first turned on my cochlear   implant, I was hearing so many new sounds. Water made noise?! Plastic bags crinkled?! Voices were so much louder. The world was unbearably noisy!” Bella reminisces.

Sometimes she could pick up the sound of laughter. And she was finally aware of music.

For her, it was enough.

In the Middle: 1990s

Newborn screenings were still not mandatory in the early 90s when Shevy was born, but Shevy’s mother took her for testing at 12 months, when a local speech therapist expressed concern that she wasn’t babbling. By 13 months Shevy was wearing hearing aids and starting speech therapy, quickly transitioning to verbal speech and lipreading.

Shevy’s hearing loss grew progressively worse. One of her ears had profound hearing loss, while the other was able to hear with the assistance of a hearing aid. When she was a young teen, she received a cochlear implant for her profoundly deaf ear.

For Shevy, cochlear implants were simultaneously just a better hearing aid and a portal to an alien world. Suddenly, sound was pouring in, but she couldn’t identify what she was hearing. It took intense therapy, over several months, to identify noises.

Shevy’s therapist would cover her mouth and repeat sounds over and over so she could learn to tell them apart. “She’d go ‘Ah, ooh, ee, s, sh, m,’ over and over and over, until I finally got it,” Shevy remembers. “And that was only the beginning!”

A few years later, Shevy’s other ear suddenly lost its ability to function. Her second cochlear implant was a smooth experience. The brain’s auditory nerve already knew how to interpret sound coming from this ear, and the implant was a tremendous improvement on her hearing aid.

But school was still a challenge, even with hearing aids and the later cochlear implants. Shevy worked hard to keep up in the classroom and participate in conversations with her peers. Her ability to speak and lip-read were huge assets in forming solid friendships.

“My school was amazing. I was mainstreamed right away, but in those days, teachers didn’t know much about accommodating a child who was hard of hearing in the classroom. My speech therapist came to do an in-service with my teachers, and that helped.”

One teacher, who spoke Hebrew with an Israeli accent, realized after the in-service that her student couldn’t understand her. She gave Shevy pre-filled sheets so she could learn the material without straining to hear sounds that sounded more like a hard-to-interpret radio broadcast from a foreign country.

Shevy’s school made sure her class occupied the one carpeted room in the school for three of her high school years — just for her.

“Carpet absorbs noise, and desks don’t scrape as loudly. It was easier for me to hear my teachers and learn with that carpet. As an adult, I understand everything the school did for me, and I’m so grateful,” Shevy says.

Shevy dreamed of becoming a speech therapist, but she was refused a disability grant from a government agency because “no college would accept her.” She went to school and earned her degree anyway. Today, Shevy is raising a beautiful family. At work, she helps school-age children articulate their s’s and r’s — and she also gives chizuk and guidance both to parents of children with hearing loss and the children themselves.

Going Forward: 2000s

Deena was diagnosed less than two days after she was born. “My parents are both hard of hearing, so my hearing loss wasn’t a tremendous shock,” she says. “I was fitted with hearing aids and attended Strivright, a Jewish school for children with auditory challenges. Therapists were a normal part of my day, and the goal was to mainstream as many of us as quickly as possible.”

“Even though we knew about the benefits, and most kids my age with hearing loss received cochlear implants as toddlers, my father was upset by the idea,” Deena says. Deaf himself, he also had several deaf siblings, and they were a close-knit support group. “He was proud of his deafness, and cochlear implants felt like a betrayal to him. My mother, who’d had a hard time as a child because of her hearing loss, was desperate to do the surgery.”

When the pediatrician warned that if they waited too long for implants Deena’s speech would be affected, they finally scheduled the initial surgery for when she was 16 months old. Deena’s mother was elated, but her father grappled with feelings of disappointment even as the doctor performed the surgery.

“We have a video of when my mother first turned on my cochlear implant, and you can see the wonder on my face when I first heard sound clearly. It always makes us emotional,” Deena says.

Deena’s father was still more dubious. Then one day, he decided to try an experiment. Before putting on the speech processor that rested behind Deena’s ear, he yelled to get his daughter’s attention. She didn’t respond. He slipped the device on her head and called her name. Deena looked up. At that moment, Deena’s father realized what the device could do for his daughter — allow her to live a fully integrated life. When Deena had her second cochlear implant placed in the other ear, her father congratulated the surgeon, Dr. Thomas J. Roland of NYU.

The advantage of early cochlear implants and intense auditory and social skills therapy at Strivright made Deena’s mainstream school experience, which began in early elementary, relatively seamless. She did have to attend weekly speech therapy for a few years to work on a lisp (“Tzitzis was a very hard word for me to say!” she laughs), but Deena was a bright student who excelled in school, both academically and socially. It didn’t take her long to blend in.

“I even participated in dance in our school production,” Deena says. Deena loves to dance, but when she dances to a tune with no words, she can’t always hear the auditory cues for specific moves. She goes home with a recording of the song and uses a special app to help her find the musical prompts. “I have a friend who plays guitar, and she taught me some chords so I can work on counting the beats in a melody.”

Deena doesn’t let her hearing loss stop her from accomplishing, but it takes effort and persistence.

“I try so hard to be normal, but for me, there’s always an extra step,” Deena says.

She’s constantly pushing herself. “I once took notes during a speech, and my teacher said, ‘I didn’t know people who are hard of hearing can take notes!’ I told her that not everyone can, but we want to fit in, so we try. No teacher can dream of the amount of effort it takes to stay at the top of the class with hearing loss.”

Deena is still in school, but looks forward to seminary, a job, and a family of her own. Her dream is to create a program where children who are deaf and hard of hearing can connect and support each other.

Same Difference

Technology and society have come a long way in terms of treatments for, and in the treatment of, people with hearing loss, but there’s still a road to travel.

“I feel like some unaware people consider us disabled, but we are so able because of all the effort we’re used to putting into everything,” Deena explains.

Shevy agrees. “I don’t view myself as someone with a disability.”

“There’s nothing wrong with my intelligence. I just want to be treated normally. It hurts when people can’t see past the unclear speech and cochlear implants,” Bella adds.

Bella in particular has seen her world transform. In her lifetime, deafness went from a major, isolating condition to a more minor one. Today, children diagnosed with a hearing loss can look forward to a life of inclusion and hope.

“My favorite thing about being an audiologist is watching children with hearing loss grow into adults who can work, learn, teach, parent, and follow their dreams,” says Dr. Kader. “We’ve come so far.”

The Miracle of Sound

Four out of every 1,000 children born in the United States experience some form of hearing loss. The majority of hearing loss is sensorineural hearing loss (SNHL). In SNHL, the hair cells in the ear’s cochlea are damaged or die. Depending on how many hair cells aren’t working, hearing impairments range from mild to moderate, severe, and profound — and even a “mild” case of hearing loss should be taken care of as quickly as possible.

“Fetuses can hear before birth, so babies with hearing loss are already behind from the moment they’re born,” says Dr. Sara Kader, AuD, CCC-A. “Untreated hearing loss can impact a child’s development academically, socially, and emotionally. It’s difficult to do well in school if you can’t hear properly, and it’s tough to make friends when you can’t hear their conversations and interact.”

They’re not magical devices that restore perfect hearing, but cochlear implants, invented in the 1980s and perfected in the last two decades, have significantly improved many patients’ hearing and ability to interact with others.

Hearing aids amplify sounds. Cochlear implants bypass the ear completely. Sounds are picked up by a speech processing device worn behind the ear, and noises are electronically transmitted to a hearing device that doctors surgically implant in the inner ear. Electrodes extend into the cochlea. These wires respond to sounds transmitted from the outer processor and stimulate the neurons in the cochlea, which send signals to the auditory nerve in the brain. This amazing process has opened up unimaginable vistas for children with severe and profound hearing loss.

“Cochlear implants used to be for patients who received no benefit from traditional hearing aids at all, but now implants are also helping those who have some benefit from hearing aids but could still do better. Implants are now appropriate for some infants from as young as six months,” says Dr. Kader. The earlier the implants, the better the outcomes. While there is a tremendous variety, patients who receive implants at a young age often have almost no developmental delays.

Success in School

“My student doesn’t need accommodations because her hearing loss isn’t bad.”

“My student has one normal ear so he can hear perfectly.”

“My student has other problems. Let’s address hearing loss later.”

“All of the above statements are false,” says Frayde Friedman, MS, CCC-SLP, LSLS, Cert. AVT, a speech therapist with 20+ years of experience with deaf and hard-of-hearing children and leading teacher training workshops on classroom support. These “myths” stem from fundamentally misunderstanding one major truth: Hearing loss — whether mild or severe, whether a child wears hearing aids or cochlear implants — makes hearing and listening in class that much harder.

And no artificial device can restore perfect hearing.

Children with hearing loss present as so typical — it’s considered an “invisible” disability — but at the same time, their unique challenges need to be addressed. Rebbeim and teachers may not be aware that even an academically successful child needs to be accommodated. Frayde lists several strategies that can completely change the classroom experience for children with hearing loss:

FM Systems — Teachers can use FM systems, where they wear a microphone, and a corresponding receiver allows the sound of their voice to go straight into the child’s hearing device. The only drawback? Teachers need to remember to mute the device when leaving the classroom, or students might hear unrelated conversations (much to their delight…).

Noise Control — Be aware of noise levels. It’s hard for students with hearing loss to hear a specific person when there’s a bustle of activity. The equivalent scenario would be taking a shower with the water on full blast, and simultaneously trying to converse with a whining child through the door — not an easy feat. A carpet on the floor, bulletin boards, and tennis balls on the legs of desks and chairs make for a quieter learning environment.

Proximity — Children with hearing loss need to sit in the front, or as close as possible, since distance imposes constant strain. When a sub refused to give a student with hearing loss “special accommodations,” Frayde explained that for this child, the front row wasn’t a privilege but a necessity.

Visual aids — A student of Frayde’s told her, “My teacher talks in the closet! I can’t hear what she’s saying!” Simple modifications like facing the class when speaking and writing important information on the board can help these students participate.

Common sense — The most important strategy. A mother reached out Frayde, crying hysterically. Her daughter’s hearing aid batteries had stopped working, but when the girl told her teacher, the only response she received was, “Try your best.” To the school’s credit, they spoke to the teacher immediately, letting her know that her response was inappropriate. But a little sensitivity and common sense could have spared the girl and her mother a lot of anguish.

“Let your students reach for the stars! Let them do anything!” Frayde says. “But first give them what they need.”

(Originally featured in Family First, Issue 921)