Lydia Denworth with her son Alex: "'I don't think he can hear,' the cognitive therapist said. I knew that she was right."

Learning to hear

When I discovered my son was deaf, I set out to learn about ears but ended up studying the brain
December 11, 2014
Lydia Denworth’s son was nearly two when doctors realised he could hear very little. Her book I Can Hear You Whisper, published to acclaim in the United States, explores the latest neuroscience on how the brain responds to sound, what it means to hear and how language is used and understood.

At bedtime, it was never totally quiet in Alex’s room. Laughter floated down the hall as my husband, Mark, played with our two older boys. The rumble of cars going by on our Brooklyn street or bits of conversation from passersby on the pavement drifted through the third-floor window into the narrow room. As Alex and I cuddled in the creaky old rocker wedged next to the crib, we sometimes hit the wall with a bang. From time to time, the radiator behind us hissed. The heating system was nearly as old as our house.

Even so, it was peaceful. My days were full of the noise and energy of three young boys. By evening, when Mark started in on pillow fights and helicopter spins and generally getting rowdy with Jake and Matthew, I retreated with Alex, the baby, to the slow comfort of our routine. It was my time, maternal and feminine, about books and lullabies and snuggling. He sat on my lap, smelling of baby soap and clean pyjamas, and I read a story.

“Goodnight room. Goodnight moon. Goodnight cow jumping over the moon,” I read one night when he was about 11 months old.

“Look, Alex, there’s the cow going up, up, up over the moon. Can you show me the cow?”

He just looked at the book. We’d been reading this book for months. Hadn’t his brothers been able to point out animals, colours, and shapes by now?

“Point to the cow, sweetheart.” Silence.

“There’s the cow!” Nothing.

When I got to “Goodnight light and the red balloon,” I tried again. “I see the red balloon. Do you see the red balloon?”


“Can you point to the red balloon?”

I took his small index finger in mine and led it to the balloon. “That’s the red balloon.”

He grinned and I kissed the top of his head. But the question had taken hold of me: why can’t he point to the cow?

I managed to finish the story. As I did every night, I carried him over to the doorway and let him flip the light switch off. We sat back down in the rocker; I rested his head on my chest and started to sing.

I liked to mix it up. Standards like “My Funny Valentine” followed by children’s songs like “Row, Row, Row Your Boat.” After we chose “Amazing Grace” for my father’s memorial service, I sang those verses with a catch in my voice.

As Alex and I rocked in the semi-darkness, with the half-closed door blocking some of the hallway light and the chattering of his brothers, my voice faltered more than usual over “... was blind, but now I see.”

The cow had me concerned.

At the end of the song, I murmured “I love you,” into Alex’s ear and laid him in his crib with a kiss.

The day after Alex was born, four weeks early, in April 2003, a nurse appeared at my hospital bedside. I remember her blue scrubs and her bun and that, when she came in, I was watching the news reports from Baghdad, where Iraqis were throwing shoes at a statue of Saddam Hussein and people thought we had already won the war. The nurse told me Alex had failed a routine hearing test. Failing is memorable. My second son, Matthew, had had the same test when he was born in the same hospital 19 months earlier, but I didn’t remember it at all. I wondered how you could possibly test a newborn’s hearing, but was too bleary and tired to ask.

“His ears are still full of mucus because he was early,” the nurse explained. “That’s probably all it is.”

I was given a phone number to call and instructions to make an appointment with the hospital audiologist in four weeks, when the mucus would have cleared. No one seemed unduly worried.

A few weeks later, I strapped Alex into the baby carrier I wore on my chest and trekked from Brooklyn back to Mount Sinai Hospital in Manhattan for his second test. In 1978, a man named David Kemp discovered that when the hair cells in the snail-shaped inner ear react to sound and send signals to the brain, they also send nearly inaudible sounds back up the ear canal—almost like an echo. Those sounds are called an otoacoustic emission (or OAE) and they were what the Mount Sinai audiologist was going to try to measure in Alex. As I cradled his tiny one-month-old body, she put a foam-covered probe in each ear and sent clicks and tones down the ear canals. An OAE test ought to pick up anything worse than mild hearing loss. The results came back normal. Alex’s inner ears appeared to respond to the sounds.

“It was the mucus,” the audiologist told me. “Everything looks OK now.”

Relieved, I headed back to Brooklyn and put hearing out of my mind.

Having a third boy makes life more chaotic. You no longer have enough arms or a big enough lap. The soundtrack of the days would rival the noisiest dance club. A tolerance for a little danger and dirt helps, as does relaxing about the small stuff. If your first child drops her bottle on the ground, you re-sterilise it. For the second, you rinse it off under running water. For the third... well, maybe you pop it in your own mouth to clean it off if water’s not available.

Alex made it easy for me. For months, we revelled in what a sweet and peaceful baby he was. “He’s taken a look around and figured out he’s the third child,” his father, Mark, joked. “It’s a strategy that’s sure to win us over.” Perched in his baby seat, Alex took in the world through big brown eyes, always observing. When he got bored or tired, he found his thumb and dropped off to sleep. Even though I knew thumb-sucking would be a terrible habit to break—and it was—at the time I was grateful that Alex could comfort himself so easily. It meant I didn’t have to do it. Once, when we had guests, he lay snuggled in a corner of the living room for an hour, quiet as a Buddha, before the visitors even realised he was in the room.

Sometime between six and eight months, however, I was driven out of my third-child complacency. I dusted off my old copy of What to Expect the First Year and re-read the should-be-able-to’s that I had once known by heart.

“By six months, your baby... should be able to... keep head level with body when pulled to sitting.”

Not really.

Under the headline “Not Sitting Yet,” in the seventh month, I found an attempt at calming anxious mothers. “Because normal babies accomplish different developmental feats at different ages, there’s a wide range of ‘normal’ for every milestone...  And since your child has a long way to go before she reaches the outer limits of [the normal] range, you certainly don’t have to worry...”

I began to anyway. Alex was slow to hit every milestone: rolling over, sitting up, pulling up. Every time our worry went from simmer to boil, however, he finally achieved the next skill. At his nine-month checkup, when he wasn’t pulling up to stand or even holding himself up on all fours, our paediatrician shared my concern. We agreed I would return in six weeks rather than three months if nothing had changed. But again, soon after that, I found Alex standing up in his crib one morning. He had pulled himself up on the railings and was proud as could be. “He’s still in the normal range,” Dr Price said when I called to report. “Just the far end of it.”

Really, my initial concerns about Alex were pretty low on the scale—a vague uneasiness like the tickle in your throat before a cold comes on that might go away after a good night’s sleep. His first birthday came and went. He liked music. Sometimes he didn’t answer to his name, but sometimes he did. Could he not hear me or was he not listening? Could something else be going on? “The average baby can be expected to say what she means and mean what she says for the first time anywhere between 10 and 14 months...”

Alex could say “hi,” “bye,” and “mama,” but that was it. My other sons both walked at 11 months and started talking around the same time. Then they added more than a word a week, and by 18 months, they had vocabularies of about 50 words, much like many other children. Alex was clearly different.

“He’s the third,” people said. “He doesn’t need to talk. His brothers talk for him.” That argument didn’t ring true to me. If anything, I thought having two older brothers would expose him to more language, not less. Apparently, however, my chorus of advisors was not entirely wrong. According to speech researchers, second and third-born children are generally slightly later talkers than first-borns, and boys talk a little later than girls. I still didn’t think that was what was going on.

“Einstein didn’t talk until he was three,” people reminded me. Maybe. But the chances that I was raising another Einstein seemed pretty slim.

“You worry too much.”

I wanted to believe them. My competing instincts met in a stalemate, alternately grasping at any reassurance and needing desperately to know if there was a problem.

Around 15 months, Alex still wasn’t walking or talking. At his regular checkup, the paediatrician, who was someone in the practice I did not normally see, tried to reassure me. She thought he was fine. Afterward, I called our regular doctor. Alex’s case was far from clear-cut. Plenty of kids are slow to talk; some even wait until they are two but turn out fine. The doctor was wary of sending a child for an evaluation that wasn’t warranted. We talked through the possibilities, and by the end of the conversation he agreed to send Alex for an early intervention assessment, the first step in New York City towards getting therapeutic services for a child who is delayed in any way. “If they say there’s no problem,” Dr Price said, “that’s a good thing.”

Our evaluation was set for mid-August at a child development centre in Midwood, a Brooklyn neighbourhood a few miles to the southeast of us. We drove along Flatbush Avenue past furniture and appliance stores and Dunkin’ Donuts outlets. At a traffic light, I noticed a bird on a telephone wire.

“Look, Alex. Bird,” I said, pointing out the window. He looked where I was pointing and said: “Guh.”

It suddenly came to me that not only wasn’t he talking, he wasn’t imitating the sounds of letters correctly. The “buh” in “bird” was coming out as “guh.” If I said “mmm,” he might say “duh.” The evaluation was designed to assess Alex’s gross and fine motor skills, his cognitive skills and his speech. How was he doing compared to other children his age? Two days before the appointment, he had finally taken a few steps. Now he shakily repeated that for the physical therapist.

For the cognitive testing, we sat on the floor and the psychologist set out some toys. We watched Alex try to figure out what to do with a pop-up toy.

“Does he have any cause-and-effect toys at home?” he asked. “Um... Well, he has plenty of... toys,” I answered lamely. What the hell is a cause-and-effect toy? I was thinking. Then I studied the toy in question, which had four different buttons to push—a star, circle, square and triangle. Each one made a different character pop out of the box. It looked familiar.

“We used to have one of these,” I added, remembering that my oldest child had had the very same toy at some point. It had broken and been thrown out and was never replaced. Our jokes about third-child syndrome suddenly weren’t that funny. If Alex had been the first, of course, I’d have made sure that I knew what cause-and-effect toys were and that he had some.

But cause-and-effect toys were not what he was missing.

The therapists determined that Alex was mildly delayed in his gross motor skills and his cognitive skills. How significant was that? I didn’t know. We still had no idea what lay behind the delays, but at least we could take some action. He was eligible for therapy in both areas. However, the area I was most worried about—speech—didn’t qualify. A vocabulary of three words was borderline acceptable for a 16-month-old and not yet cause for concern. They did recommend another hearing test at 18 months if nothing had changed.

We began to have visits at home from a cognitive therapist named Linda and a physical therapist named Bernard. Bernard worked on walking, kicking and jumping. Linda brought stacking games, puzzles and all the cause-and-effect toys a boy could want. Alex’s physical skills got better and better, and he could manage Linda’s toys just fine. “There’s nothing cognitively wrong with this child,” Linda said after several weeks. Still, Alex didn’t say another word.

It was time for a hearing test. In early October, we went to an ear, nose and throat doctor. Sitting in the testing booth, I held 18-month-old Alex on my lap and tried to follow the instructions to stay still and quiet. From the adjacent room, on the other side of the sound-proof glass, the audiologist played a series of sounds through the speakers to our left and right. To me, they sounded like static, whistles, beeps, and the low brushing of a whisk broom over a brick floor. The idea was that if Alex heard the sound—each represented a different frequency—he would look at the speaker it came from. To encourage this, when he turned his head in the right direction, an electronic toy lit up. On one side, a slightly demonic-looking monkey played the drums; on the other, an elephant clanged cymbals.

Sounds rolled from the speakers through the small booth, first soft, then louder. I could hear them all. But Alex’s little brown head stayed distressingly steady in front of me as he watched the audiologist through the glass. Finally, when the noise got truly loud, he turned his head.

He failed unequivocally. But when we went into the doctor’s office and he examined Alex’s ears, they were full of fluid and slightly infected. Alex wasn’t complaining, but the fluid certainly could explain the test results.

“Let’s let the fluid clear up and we’ll redo the test,” said Dr Dolitsky. The part of me that wanted to believe the best had found a life raft; the part that needed to know the worst got more frustrated by the lack of clarity. The fluid was stubborn, and appointments with the busy doctor were a rare commodity. Weeks passed.

On a night like many others that cold January, I was making dinner while the boys played in and around the kitchen. I heard my husband’s key in the lock. Jake and Matthew tore down the long, narrow hall toward the door. “Daddy! Daddy! Daddy!” they cried and flung themselves at Mark before he was all the way inside.

I turned and looked at Alex. He was still sitting on the kitchen floor, his back to the door, fully engaged in rolling a toy truck into a tower of blocks. A raw, sharp ache hit my gut. Taking a deep breath, I bent down, tapped Alex on the shoulder and, when he looked up, pointed at the pandemonium down the hall. His gaze followed my finger. When he spotted Mark, he leapt up and raced into his arms.

“It’s the fluid,” I said to myself. “It’s the fluid.”

The next day, when I went to pick him up from day care, it happened again. I could see him across the room as I came through the gate.

“Hi, Alex,” I called. “Hey, buddy, it’s Mummy.”

He didn’t look up or stop playing. The teacher standing next to him said, “Alex, Mummy’s here.” Nothing. She tapped his shoulder and only then did he look up. His face lit up when he saw me, and he came running to greet me. The teacher and I looked at each other, and I looked away, embarrassed by the awkward intimacy of sharing this terrible moment.

He had never been this obviously unresponsive.

A few days later, on a snowy Sunday, the first in February, I was standing in a Manhattan theatre lobby with Mark when my cell phone rang. It was Linda, the cognitive therapist who’d been working with Alex for a few months by then. She had been convinced that hearing wasn’t the problem. There were good reasons to think that—Alex had compensated well—and she was not alone in her opinion. “I don’t think he can hear,” she said now, “at least not well.”

I knew that she was right—and that it wasn’t just the fluid. Having someone in a position of authority say it out loud allowed me to do the same. The problem now had hard edges, like the difference between worrying about paying the bills and realising you have to sell your home.

It was twilight as Mark and I left the theatre. The snowstorm had momentarily hushed the din of Manhattan. The snow, the buildings, and the sky were washed a dusky blue-gray. Here and there, street-lights sparkled, but their halos blurred and fuzzed before me as I started to cry.

Shock, fear, bewilderment, love. A levee had burst and pent-up emotion flooded through me. Unsteadily, I clung to Mark’s arm and blurted out just a few of my frantic questions.

“What will this mean? What will his life be like?” Tears streamed down my cheeks. “How will I talk to my son?” And then, “How could I not have known?”

“If it had been obvious, we would have known,” Mark insisted. “We’ll do whatever we have to do,” he added with more certainty than I think he felt.

We both knew that most of the doing would fall to me. Mark worked 12 hours a day, longer if he was travelling or had business dinners in the evenings. I had been about to return to work, but those plans were now on hold.

With the next hearing test just days away, I scheduled a speech and language evaluation with a therapist in our neighbourhood. Her carpeted office was on the garden floor of a brownstone, which put the small windows at sidewalk level. I sat in a child-size chair and Alex stood at the child-size table. The therapist pulled down some cars and a Mr Potato Head. An evaluation for a child of 21 months consists of play and pictures. Out of four pictures of animals, for instance, the therapist might ask a child to “show me the horse.” Or, with a line of toy cars on the desk, she might ask the child to “make the green one go.” In order to be sure a child is using only hearing, testers sometimes cover the lower half of their faces with a shield, a wooden hoop with a piece of black fabric stretched across it.

When words and instructions were presented to Alex in this way, with the speaker’s mouth hidden behind the hoop, it was a disaster. Until that moment, I hadn’t realised just how many visual cues we’d been providing him. Every time we told him to wave bye-bye, for instance, we waved our own hands. As the therapist worked her way through the evaluation, Alex became more and more confused. He wasn’t a child who fussed or acted out. He just went still. Quiet and staring, he searched her face and mine for some hint of what was being asked of him. I tried for a reassuring smile, then turned my gaze to the little window to hide the emotion welling up. A stroller went by followed by a pair of black boots. “Do you want some juice?” I heard the woman say to the child.

What stayed with me from the therapist’s report of that day were the measures of how Alex was doing relative to other children his age. He was in the second and eighth percentiles respectively for what he could understand (receptive language) and what he could say (expressive language). Overall, 97 per cent of almost-two year olds had more language than he did. The only good news was that a substantial hearing loss would explain everything he couldn’t do and how a child who seemed relatively bright—as measured by the way he played with toys and observed what was going on around him—could have such gaping holes in his abilities and knowledge. It explained why he couldn’t point to the cow in Goodnight Moon.

The songs I sang at bedtime had been silent for him. Every night I had whispered in his ear “I love you.” I don’t think he ever heard me. “I need to know everything there is to know about ears,” I told myself at first. It wasn’t that simple. Hearing, through sound, I soon realised, is inextricably linked to spoken language and through language to literacy. I set out to understand ears, but I ended up exploring the brain. I wanted to know what hearing meant for Alex, and found myself grappling with the scientific, developmental, and cultural implications of how to use what we know about sound and language. Alex’s ears, in every sense, were just the beginning.