I Can Hear You Whisper (35 page)

That doesn't mean he thinks deaf kids don't need ASL. “The message [at Gallaudet] is: Don't deprive deaf children of sign language, and I don't disagree,” he says. “I support children being given everything possible. It's destructive to say that ASL is going to interfere. That's not based on science, that's based on bias. It's the same as with the deaf saying don't [get an implant]—that's a cultural bias. But I have a feeling that to survive or prosper really in our world and our culture, English is required.”

After decades working in the field, Bakke now has a personal relationship with cochlear implants. His granddaughter, who is still a toddler, has two. Her parents have signed with her since they knew she was deaf. Today, the little girl signs and speaks, though her spoken language is still somewhat delayed. “I do understand why people would feel hurt about a societal perspective that there's something wrong with you,” says Bakke. “Is ‘fixing' the right word? My grandchild did not need to be fixed. She's a wonderful human being and a gift to the world. She can't hear. I don't consider it fixing. I consider it giving her access. When you give a child access, you give a child the ability to learn the way other people are able to learn.”

Views like Bakke's are still not popular at Gallaudet, and he walks a delicate line there. “Because of my brother, I feel very at home here,” he says. “I had a foundation in ASL. I felt more comfortable coming here than a lot of people would.” Nonetheless, he sees Gallaudet's future as “uncertain.” His own view of the new realities of deafness is clear-eyed. “The cochlear implant is the best thing that ever happened to deaf kids,” he says. “But it isn't a miracle or a cure. It isn't even very good. It has real limitations. It's a wonderful device that opens the world for kids, but it's not hearing. They're not hearing kids. They're deaf kids.” Even so, the change implants have brought is extreme. Says Bakke, “My brother's life was A and my grandchild's life is Z.”

 • • • 

Janis Cole, my ASL teacher, does not have a cochlear implant, nor does she want one. I guessed from an early class discussion on Deaf culture and appropriate labels that she was suffused with Deaf pride and contentment. So I leaked out the details of Alex's life over the two weeks we were together.

“Thank you for sharing about your son,” she wrote after I turned in a homework assignment in which I asked what the difference between deaf and hard of hearing meant to her (without letting on about the implant). She suggested we get together with an interpreter.

The schedule didn't work in our favor, and when there was no interpreter to be had, she said we should meet after class alone anyway. “We can do it!” she said.

We sat in the classroom one afternoon after everyone was gone, communicating by signing and writing on a piece of paper. I still have the paper. It's a collage of emotion. At the center is a list of resources to help me access the deaf community in New York, including a good friend's e-mail address. But all around the margins of that sheet of lined notebook paper, there are signs of an intense conversation.

I
WAS SCARED TO COME HERE
, I signed at the beginning. M
Y SON HAS A COCHLEAR IMPLANT.

I GUESSED
, she responded.

On the paper, she drew an arrow and wrote the words “extreme” at one end and “liberal” at the other. “Like in any community,” she added. I circled the word “extreme” and wrote below it, “so loud.”

“They mean well,” she wrote on the opposite margin. “OPPRESSION.”

Smack in the middle, she wrote “Bilingual” and circled it heavily. E
NGLISH
, she signed. Then she fingerspelled
A-S-L
.

“Literacy,” I wrote. And “worried.”

We debated that a little, with me signing
BOOK
and
READ
and
WRITE
. In another spot, she wrote “Both,” meaning, Why not have Alex do both English and ASL?

The name AG Bell is scribbled across the left-hand corner of the page. Janis made it clear how much she disliked the listening and spoken language advocacy group. I wasn't brave enough to tell her the reason I had to leave class a day early was to collect Alex from my mother and fly to Phoenix for an AG Bell convention, but I did say that I thought they had helped a lot of people.

Then she wrote a longer passage: “Many culturally deaf people can hear and speak yet chose Deaf world. Not necessarily mean they not integrate in the hearing . . .”

She considered for a moment. H
EARING
, she signed, rolling her forefinger away from her mouth. Then, a finger to her ear and her mouth in succession:
DEAF
.

“Walk in front of me,” she wrote. Then she put an X through “front.” And wrote underneath it: “Walk beside me.”

It was a quote usually attributed to Albert Camus: “Don't walk behind me, I may not lead. Don't walk in front of me, I may not follow. Just walk beside me and be my friend.” It seemed a fair enough piece of advice to guide the interaction between deaf and hearing.

There was a pause and then, to my great surprise, Janis spoke.

“I'm going to talk,” she said very clearly. “Because it's important.” Then she paused. “I never use my voice here.”

I could see that it cost her something to do so, yet the desire to connect had moved us both. I started to talk and she shook her head.

“You still have to sign,” she reminded me.

O
F COURSE
, I signed, surprised and embarrassed at how unthinkingly I had reverted to my way of communicating.

She looked at me intently and said with feeling: “I think it's wonderful you're here.”

THANK-YOU
, I signed, touching my chin with four fingers and then moving my hand toward her. I
'M GLAD TO MEET YOU.

Then I wrote it down for emphasis. Under “meet” I added “know”: I am glad to know you.

We stood up. We saw the world a little differently, but that was okay.

M
ark had something on his mind. He had gotten home late from work. The boys were in bed and we were catching up over a glass of wine. He had a tentative look on his face as if he'd hit pause somewhere between wishful and worried. Then he blurted it out.

“Would you consider moving to Hong Kong?”

I stared at him and tried not to overreact.

“What?!”

“They've asked me to move to Hong Kong.”

For a long minute, I didn't say anything.

“You're not saying no,” he pointed out, surprised.

I was thinking. I really didn't want to move to Hong Kong. I had dug my roots deep into the tree-lined streets of Brooklyn. But I knew Mark wanted to go. He and I had lived in Europe for six years and had loved the experience. He had always wanted to live in Asia, too. Plus he wanted—needed—a change at the bank where he worked. Mostly, though, I wasn't thinking about Mark or about me.

“What about Alex?” I finally said.

Alex was halfway through first grade, and I had finally taken a deep breath and dared to think we were over the highest hurdles. He was reading—phonics-heavy early readers featuring sequences like “the hen is mad, the hen is in the mud, the mad hen is wet” and early Dr. Seuss, like
Hop on Pop
. He had friends—lovely friends who stopped to place his processor back on his head if the magnet fell off in the playground, which it frequently did. It didn't seem fair to take him somewhere where it might be considerably harder for him to thrive. We had a carefully cultivated support network: a school we loved, a top-notch doctor, a teacher of the deaf, a speech therapist, and three—yes, three—audiologists (one for the implant, one for the hearing aid, one from the Board of Education to work with his school). Did we need all that? Could we take him halfway around the world and start all over again? Did his success depend on his particular situation or did it mean he was ready to move beyond it?

What weight did his hearing carry relative to all the other considerations that determine life decisions: Mark's career versus mine, the cost of this versus the savings from that, the happiness of this kid versus the education of that kid, change versus status quo, thirst for adventure versus desire for rootedness? Alex's needs counted for a lot. But he really was doing awfully well. I opened the door to a small thought: It might not be impossible. The idea was simultaneously frightening and freeing.

A few nights later, we sat the boys down and told them what we were considering. Jake, who was eleven, was teary and shocked. He acknowledged that there might be cool aspects to such an adventure, but he had specific questions like: “Will the pictures be in the same spots on the walls when we come back?”

Matthew, at eight, was dead set against it: “No! No! No! You can't make me go.”

Alex, who was six, could barely contain himself. Gleefully, he cried: “We're moving to China!”

Then he flung himself onto Mark's lap, wrapped his arms around his neck, and declared: “You're the best parents ever!”

Speechless, Mark and I just stared at each other.

“Okay, I wasn't expecting that,” I said finally.

“Wow,” was all Mark could manage.

Jake and Matthew started to protest. “He's only six. He doesn't understand what it means to leave his friends.”

“I'll Skype,” said Alex confidently, which made us all laugh, since not one of us had ever used Skype. I guessed he had talked to our German babysitter's friend back home. Alex turned back to Mark: “I want to see the Great Wall. I want to learn Mandarin, more than just
Ni hao
. I'll even try some Chinese food!”

“What does he know?!” cried Jake and Matthew in unison.

They had a point. Alex couldn't possibly grasp what it truly meant to uproot our family and move around the world to a very foreign culture. Neither could he think through how much more difficult it might be for him in particular to find a school that worked, therapists to help him continue his progress, and a community that was as warm and nurturing as the one we had in Brooklyn. There would be even fewer people with hearing aids and cochlear implants in his life.

But Alex inspired me. “Let me go!” he was saying. He was brave and adventurous; I should be, too.

I got on a plane to investigate what life in Hong Kong would look like. It wasn't all encouraging. There was no such thing as a teacher of the deaf. One speech therapist I interviewed had such a heavy Chinese accent it was hard even for me to understand her. We would have to buy some expensive new equipment, since our American FM system—the microphone the teacher used in the classroom—wouldn't work in Hong Kong. And who would fix a broken hearing aid or processor? That last question was no small matter. In the space of one frustrating two-year period, Alex's cochlear implant processor was repaired fifteen times. One day, his hearing aid had broken, too, and I had had to leave him standing in the classroom, still and staring, with the same expression he had worn years earlier at that first evaluation. His success was undeniably dependent on technology.

 • • • 

Not long after my first trip to Hong Kong, on the weekend of Alex's seventh birthday, I took him and his brothers to Boulder, Colorado, to meet neuroscientist Anu Sharma. She was going to include Alex in her database of deaf and hard-of-hearing children. Jake and Matthew were there to serve as typically hearing children for the study and as moral support for Alex. The EEG measurements Sharma would take of Alex would allow us to compare the speed of his responses to acoustic signals on both sides of his brain, through the hearing aid and through the cochlear implant. And they would help her in her quest to understand if there were clues in the brain to tell us which kids were going to do better with cochlear implants than others. “Say one hundred children get implanted at one year,” says Sharma. “They're not all like Alex. Some won't speak that well or hear that well. What about the brain causes that?”

It was a beautiful April day when we drove to the laboratory where Julia the lab manager met us and showed us the fancy cap of electrodes they had recently begun using. Alex started out brave.

“I want to go first because I'm the one with this,” he said, pointing to his processor.

Once in the soundproof booth, though, sitting alone in the big black vinyl chair as lab staff wielding wires surrounded him, he began to look nervous and called for me to come in and sit with him. Jake and Matthew would use the new “net” of electrodes, a cap that was easy to put on and take off. For Alex, Julia used a conductive gel and taped nine electrodes to various spots on his head: one at the top, two behind and below each ear, and the rest around his forehead and on the top of his nose.

On a television in front of him,
The Chronicles of Narnia: The Lion, the Witch, and the Wardrobe
played silently. Suddenly, “ba, ba, ba” blared from the speakers to Alex's left and right. “It sounds like a frog,” said Matthew later, when it was his turn. Alex squeezed my hand and together we listened to the full-throated croaking—ba, ba, ba—and watched Lucy meet Mr. Tumnus by the lamppost in the snowy woods of Narnia.

Just like they were supposed to, the repeated speech sounds evoked a response in Alex's brain. The results—line after line of waveforms—brought good news. There was a range for normal and Alex was in it. Through both ears, with the hearing aid and the cochlear implant, his auditory cortex had been consistently receiving enough sound that it had developed an N1 and P1 that could have been that of a hearing child.

As if to prove it, that same night, at a noisy Mexican restaurant with friends who lived in Boulder, Alex insisted we play Whisper down the Line, his new favorite game. He was terrible at it, mangling the words that I passed on to him after Matthew passed them on to me. But still . . . who would have ever thought? He could hear me whisper.

 • • • 

Nearly a year after Mark suggested we move, Alex and I sat at the table in our new apartment with his second-grade homework from the Hong Kong International School.

I had double-checked the batteries in Alex's cochlear implant and hearing aid, so I knew that when he first ignored my request to sit down and focus, it was probably not because he didn't hear me but because he wanted to finish telling Matthew about the funny thing that happened on the school bus. After one more trip to the kitchen for another yogurt, though, he had settled down to show me what he'd learned about how to complete the double- and triple-digit arithmetic problems he'd been assigned.

When we moved on to reading, which he had to do for twenty minutes, he pulled out his beloved copy of
Frog and Toad All Year
and picked a story to read aloud. Since the holidays were coming, he chose “Christmas Eve,” in which Frog is late for Christmas Eve supper and Toad imagines all the horrible things that might have befallen his friend.

“What if Frog has fallen into a deep hole and cannot get out?” read Alex.

“‘What if Frog is lost in the woods?'” He added some drama to his voice. “‘What if he is cold and wet and hungry? What if he is being chased by a big animal with many sharp teeth? What if he is being eaten up?'” cried Alex.

Fortunately, Frog had simply gotten delayed wrapping Toad's present. Alex turned reflective as he read the last lines about the two friends enjoying a quiet evening by the fire. He closed the book.

“I can't wait for Christmas, Mommy,” he said. “When can we get our tree?”

We talked about Christmas for a few minutes—it would be our first away from family and home.

Then I reminded him to enter the book's title into his reading log. There was a spot for assessing the book's difficulty. A month before, he had called it “Just Right.”

“I think it's ‘Too Easy' now,” he admitted.

I gave him a hug, a kiss, and a “good job, sweetheart,” and he went off to play with his new friend Christopher who lived upstairs.

Except for the bit about the batteries, it could have been a scene at anyone's dining room table.