Ashley Yount Can't Hear You
Julie Yount lugged clean laundry into her son's room, where her daughter, ten-month-old Ashley, was playing. Ashley didn't turn around, but Julie chattered baby talk anyway as she loaded Blake's clothes into his bureau. Life was good: Julie liked this new house in Beaumont, so far out in the country that raccoons waddled through the back yard. She'd finally finished unpacking and was beginning to feel settled; the kids were, for the moment, happy; the clothes were fresh-smelling and warm from the dryer.
Then, suddenly, Ashley caught sight of Julie. And startled, she began to wail.
Julie was even more startled. Ashley, she realized, hadn't heard her.
On the phone, Greg, Julie's husband, told her that she was making a mountain out of a molehill: Ashley was fine.
Julie prayed that he was right.
A few days later Greg's mom, Earlene Yanaczo, drove Julie and Ashley to Houston. For the mission, Earlene also enlisted Greg's aunt Jeanette Graves. Earlene, a high-maintenance blond, had spent hours on the phone with Julie, and knew she needed all the moral support she could get.
Ashley had an appointment with audiologists at Texas Children's Hospital. Testing an infant's hearing is tricky; you can't just tell a baby to say "now" when she hears a sound. For the first test, the audiologists had Ashley sit in Julie's lap. When they played a sound, a puppet would appear; the idea was to teach Ashley to look for the puppet whenever she heard something. Eventually, they played softer and softer sounds, to gauge what Ashley would respond to.
After that test, the audiologists told Julie not to worry, that Ashley's hearing seemed fine. Maybe she just had a little fluid in her ears, they said. Nothing to worry about.
For the first time in days, Julie felt hope.
Just in case they'd missed something, the audiologists wanted an ABR -- an Aided Brainstem Response test. They taped pads all over Ashley's head and chest. The pads were connected to a monitor that graphed brain waves -- "just like a heartbeat," Julie thought. Then everyone waited for Ashley to fall asleep, so they could tell whether her sleeping brain registered sound.
For what seemed like hours, Julie sat watching Ashley sleep, and watching one of the audiologists monitor Ashley's brain waves. Eventually, that audiologist called another into the room, to double-check her result.
The news wasn't good. Somehow -- perhaps by picking up Julie's unconscious physical cues -- Ashley had faked the first test. Gently, the audiologists told Julie that the ABR showed that Ashley had a significant hearing loss. She was deaf.
Julie clenched her hands into fists and cried. She felt numb. She heard bits and pieces of what the audiologist said: something about how the ear works, something about therapy and follow-up.
There was more, and there would be much more later, when Julie could absorb it. Over the next two years, she'd fill binders with notes. She'd talk with people who passionately believed they knew how Ashley should be educated -- and to other people whose beliefs were just as passionate, but completely the opposite. Later, she'd learn the jargon -- phrases like "ASL" and "cochlear implant" -- and the strong feelings those words can evoke. Later, she and Greg would make hard decisions. Later.
But just now, Julie was trying to adjust to the idea that Ashley's world would be radically different than her own.
That night, back in Beaumont, Greg's shock registered as disbelief, a classic example of denial. "I don't see why you all are making such a big deal about this," he told Julie and Earlene.
Julie went outside and sat alone in the big back yard. She listened to the wind, and the crickets, and all the tiny night sounds. And she cried again, because Ashley would never hear them.
With Ashley's diagnosis, Julie and Greg were thrust onto the front lines of a cultural war they'd hardly known existed. They'd never realized that there's a difference between being deaf (that is, unable to hear) and Deaf, with a capital D, an active participant in Deaf culture. Ashley had been born deaf; but she -- and her parents -- would choose whether she became part of the Deaf world, or attempted to live among the hearing.
Many Deaf activists argue that the culturally Deaf should not be considered hearing people who have lost that sense, but as a linguistic minority, entitled to self-determination. Deafness, as they see it, is not a pathology to be cured; it is a rich culture, with its own language. I. King Jordan, the president of Gallaudet University, was once asked by a 60 Minutes reporter whether he'd like to have his hearing back. "That's almost like asking a black person if he would rather be white," Jordan replied. "I don't think of myself as missing something or as incomplete."
Of course, there's an obvious difference between a racial minority and the Deaf: Black children are born to black parents, and they learn about their culture from their families. Sometimes this happens in the Deaf world: A deaf couple will have a deaf child, and the child acquires sign language as naturally as a child born to Mexican parents learns Spanish. In the Deaf world, it's a badge of honor to be "Deaf of Deaf" -- that is, deaf and raised by deaf parents.
But like Ashley Yount, most deaf children are born to hearing parents -- parents who naturally want to raise their child in their own culture. Hearing parents are far more likely to push their deaf child to learn language via "the oral method" -- lip-reading and speech -- and to place their child in a mainstream school.
The oral method outrages many in the Deaf community -- some of them self-proclaimed "victims of the oral regime" whose "audist" parents forced them to struggle to make sense of spoken language, no matter how little success they had. Among the Deaf, the stigma against hearing parents is commonplace. For instance, the magazine Deaf Life attempts to educate hearing relatives and friends of the Deaf with a column called "For Hearing People Only"; the column answers questions such as "Why do most deaf parents raise a hearing child better than hearing parents raise a deaf child?"
Activists such as Harlan Lane argue that all deaf children should learn American Sign Language -- a full-fledged language and the cornerstone of Deaf culture -- rather than endure the extreme difficulties of lip reading and speech. For the same reasons, mainstreaming rates high on the Deaf's list of evils: Placing a deaf kid in a hearing school, they argue, isolates the child, cutting him off from deaf friends and Deaf culture, and forcing him into a world that will never accept his unnatural-sounding speech and limited comprehension. When the child finally can choose for himself, if he wants to leave the hearing world for the Deaf, it may already be too late: He won't know sign language, or he won't sign fluently. Even surrounded by people whose hearing is no better than his own, he'll be an outsider.
Most vehemently, Deaf activists oppose the hearing parents who give their children cochlear implants, "bionic ears" that simulate hearing. Deaf activists equate the devices with genocide. In his book The Mask of Benevolence, Lane writes: "Even if we could take children destined to be members of the African-American, or Hispanic-American, or Native American, or Deaf American communities and convert them with bio-power into white, Caucasian, hearing males -- even if we could, we should not."
Demographics make the "genocide" argument all the more pressing: As more kids are being mainstreamed, and fewer kids are born deaf, there are simply fewer people eligible to carry on Deaf culture. Between 1984 and 1994, Gallaudet University's annual survey of deaf children showed that the number of students with a severe-to-profound hearing loss decreased by a staggering 26 percent.
To flourish, Deaf culture must recruit kids like Ashley Yount -- and convince parents like Julie and Greg to turn their child over to a world very different from their own.
Shortly after Ashley was diagnosed, Texas Children's Hospital gave Julie a workbook, You and Your Hearing Impaired Child. It explained the stages of grief that parents experience. On one page, Julie highlighted the words shock, denial, sadness, guilt and bewilderment.
Beside a list of emotions, the book instructed the parent to record her responses. For depression, Julie wrote, "I cry and mope." Anger: "I lash out or hold it in until I almost burst." Loneliness: "I get on the phone and call everyone I know." Helplessness: "Pray." (Denial was Greg's specialty. For months, when Julie wasn't looking, he'd test Ashley by making a sound of some sort, to see whether she'd turn around.)
On one page of the workbook, Julie wrote a letter for Ashley to read when she was older. In it, Julie explained how she felt when she found out that Ashley was deaf. "I felt so negligent that at ten and a half months I just now suspected something. I felt so helpless and blameful -- that God was punishing me .... I'm so sorry, Ashley! I want you to feel my deep love and to know you will be able to hear and that I will do everything and anything to make it happen!"
She signed the letter, "Sincerely, Mommy."
Julie tortured herself, wondering whether the deafness was somehow her fault. Had she dropped Ashley? What medicines had she taken while she was pregnant? And what about that time she'd fallen asleep with Ashley, and Ashley had tumbled out of the bed?
The hospital gave Julie a list of people to call, most of them other parents of deaf children. She called every person on the list, and felt reassured by all but one: a Houston mother who said, "Grieve now. Your daughter will never talk like hearing children." Julie didn't call her again.
On lined notebook paper, she wrote lists of questions to take to the doctor, and also wrote his responses. She kept her notes, all of them, in three-ring binders. Eventually, they'd fill an entire shelf in her dining room.
Julie and Greg decided firmly against sign language. They wanted Ashley to understand speech and to be able to speak. They found it hard to imagine a sign-language life for her, or to picture her as part of a community they couldn't fathom, cut off from the comforting hubbub of everyday talk. They decided to try the oral method for two years; if it failed -- and they knew it might -- they'd consider sign.
Beaumont didn't offer much in the way of oral training, but Houston was a hotbed of it. With its love of technology and determination to assimilate all comers, Houston is Deaf culture's nightmare. The Houston Ear Research Foundation, headed by Dr. Edward Maddox, puts cochlear implants in more children than any other group in North or South America. Some of Houston's implanted children are related to the city's movers and shakers: one is the son of Houston Councilman Rob Todd; another is Marvin Zindler's grandson.
In Houston, oral education's headquarters are at the Center for Hearing and Speech, a collection of one-story buildings at the intersection of Shepherd and West Dallas. It's one of 24 oral programs in the United States. (Only one other, in San Antonio, is in Texas.) About 100 kids attend the Center's classes; the kids range from three-year-olds up through third grade. Many more come for therapy, some from even farther than Beaumont. Some of the kids are hearing-impaired; others, language-delayed. Many have cochlear implants.
Assuming that a child succeeds with the oral method -- and the Center is careful to point out that not all of them do -- she's expected to move into mainstream schools and, eventually, into a life not defined chiefly by deafness. Since the Center was founded in 1947 as the Houston School for Deaf Children, it's scored some impressive successes: Alumni have graduated at the heads of their high school classes and from top universities; one is a lawyer; another, a business consultant; one even plays percussion with an orchestra.
Ashley was too young for daycare classes, but twice a week, she and Julie drove to Houston for special sessions with therapist Nan Thompson. Ashley was fitted with hearing aids, and Nan -- a fizzy blond with a teenager's energy and optimism -- began training Ashley to listen for loud sounds and respond to them, so that the Center could refine its assessment of her hearing. The Texas Children's Hospital audiologists had only been able to say that Ashley's loss was somewhere between "severe" and "profound" -- but at the Center, there was a world of difference between the two categories. If the loss were merely severe, Ashley's hearing aids might allow her to learn to speak. If the loss were profound, the prognosis became far more grim.
Some weeks, Julie stayed to attend the Center's support-group meetings, where she compared notes with other parents of deaf children. Many parents, she found, were even more radically opposed to sign language than she and Greg were. One mother inveighed against sign, saying that it would only make a deaf child lazy, giving her an easy out when she wanted to communicate. That mother pointed to the success of her own profoundly deaf daughter: One of the Center's success stories, the teenager held a job at the Gap in Highland Village, would be attending Sam Houston State in the fall and -- the surest proof of assimilation into the hearing world -- had a hearing boyfriend.
Julie yearned for similar success. She fixed a scene in her mind, a small but faraway goal: Someday, she wanted Ashley to order her own burger at McDonald's.
Julie preferred the oral method, but she wasn't a purist; she figured Ashley should have every educational opportunity available. A month after Texas Children's diagnosed Ashley, Julie contacted the Deaf Co-op, run through the Beaumont school system. The two-year-old program dispatches teachers to the homes of deaf kids, to help teach both the kids and their parents, starting as soon as deafness is diagnosed. Carol Rouly, one of the program's two founding teachers, went to the Younts' house to assess Ashley.
Beaumont is home to an active Deaf community. Lamar University -- a stronghold of American Sign Language -- offers an undergraduate major in Deaf Education, plus a master's in Deaf Studies/Habilitation and a doctorate in Deaf Ed. Carol Rouly had studied at Lamar, but her commitment to signing ran even deeper.
In Julie's living room, Carol tried to establish a mother-to-mother connection by mentioning that her own daughter, 24-year-old Tracy, is profoundly deaf -- as deaf as it is possible to be.
"Does she speak?" Julie asked.
"No," said Carol. And she knew, immediately, that she'd lost Julie.
Julie had grown used to defending herself against Beaumont's true-believing signers. At Lamar, she'd peppered the Ph.D.s with questions, and stuck to her guns even as they warned her how often the oral method fails; on the other hand, they promised, signing practically guaranteed that Ashley would acquire language before she grew out of the "critical period" when it's easiest for the brain to absorb words.
After the initial meeting, Carol maneuvered to have Julie assigned to someone else in the Co-op; she didn't want to work with a mother so dead-set against sign. But Carol drew the assignment anyway. Julie and Ashley were hers.
At first, Carol didn't push sign; she sensed that a hard sell wouldn't work. On some visits, she talked to Julie about the extraordinary problems of raising a deaf child -- discipline, communication, other kids' acceptance, a parent's neglecting siblings who can hear. Some days, Carol and Julie just talked about their lives. They slowly grew to be friends; often, they ended up crying together.
Sometimes, Carol told Julie about Tracy. She'd been a baby when her deafness was diagnosed, and the family had been stationed at an Air Force base in Germany. They moved back to Texas, where Carol enrolled Tracy in an oral program. Slowly, Tracy began to lose ground. She stopped pointing to objects that she wanted, and was left with no way to communicate with her mother except the sounds she'd learned in school: b-b-b and p-p-p, the explosive consonants deaf kids can feel most easily on their lips. Nor did she pick up lip reading, a skill that Deaf advocates say is as rare as musical talent.
Frustrated, Tracy threw tantrums. One day, as she lay on the floor screaming, Carol lost her patience. She was about to kick the child, she says, but luckily, her husband came home.
Something had to be done. Carol transferred three-year-old Tracy to a new school, one that taught Total Communication -- a kind of signing/speaking hybrid in which the teacher signs as she speaks. Tracy learned Signed English, a sign language that uses English grammar, and whose signs correspond directly to English words. Words for which no sign exists are finger-spelled, using signs for English letters. The Deaf community overwhelmingly prefers ASL, which is faster, more versatile and easier for deaf children to learn. But Signed English is much easier for hearing people, like the Roulys, to learn; proponents also say it makes it easier for deaf children to learn to read and write English.
Carol resisted signing, but her husband learned, and Tracy responded beautifully. When Tracy was five, her father was sent to Korea. Carol still refused to sign, and forced Tracy to communicate by speaking and lip-reading. One day, after Carol couldn't understand yet another of Tracy's verbal requests, the girl lost her temper. This time, Carol understood what Tracy said: "You're stupid. Daddy signs. You don't sign."
Carol was stung, and she began to change. By the time Tracy was ten, Carol had embraced signing completely. At Lamar, she racked up hundreds of class hours, studying sign language and Deaf culture; eventually, she'd work as a classroom translator.
After high school, Tracy enrolled in Gallaudet University, the nation's premier school for the Deaf and the undisputed center of Deaf culture. Tracy loved the school, and graduated with a B.A.; back home at Lamar, she earned a master's in Deaf Ed. While there, she fought to become Lamar's first deaf cheerleader; since eighth grade, the small, perky blond had won spots on squads at other schools. Cheerleading, she told her mom, was her way of being normal: "When I'm up in the air doing a flip, I don't need communication."
Tracy planned to teach ASL (she now disdained Signed English) and to marry her fiance, a young deaf man from Houston. Carol worried, because although Tracy's boyfriend signs in ASL, he had been raised to speak and read lips, and his family didn't know how to sign. When Tracy met his parents, he translated for her -- and only then, because he kept having to ask people to repeat themselves, did his family realize how many words he missed as a lip reader. Carol worried about Tracy, about her potentially lonely Thanksgivings and Christmases, about the language gap that separated her boyfriend from his own parents.
In Julie, Carol saw a chance to convert a hearing parent to sign from the very start -- and to avoid the mistakes that she, and other hearing parents, had made.
In October, Julie found out the cause of Ashley's deafness. While pregnant, Julie had worked as a dental hygienist. During her second trimester, she'd had severe vomiting, nausea and dizziness -- all of which she wrote off to morning sickness. It wasn't: it was cytomegalovirus, or CMV. The disease is carried through blood and saliva -- bodily fluids a hygienist sometimes can't avoid, even with gloves. In adults the virus causes nothing worse than flulike symptoms. But in a developing fetus, it can wreak havoc, causing neurological and developmental problems, and even blindness.
Also in October, Julie found out that she was pregnant again. She hadn't planned to be, and she panicked: What if something were wrong with this child? She worried: CMV can reactivate, and what if lightning struck twice? What if this child, too, were deaf? Or worse?
When the family had moved to Beaumont, she'd asked their new church to pray for them; she asked again when Ashley's deafness was diagnosed. And now, here she was for the third time in two months, asking for more support in their prayers.
At least Ashley seemed to respond to her hearing aids. Once, while Julie was cooking in the kitchen, she dropped a pot -- and Greg saw Ashley look around for the source of the clang. Another time, while Ashley was playing in her bedroom, Julie called her name from outdoors. Ashley instantly scanned the room and looked at her mom through the window. "Ashley heard," Julie wrote in her notebook. "Ashley heard."
Ashley was beginning to show a definite personality: spunky, willful and stubborn. Blake, Julie and Greg's first child, had been a cuddly baby; Ashley wasn't. Julie liked Ashley's stubborn streak; she figured Ashley would need every ounce of it.
Nan Thompson, the therapist from the Center for Hearing and Speech, told Julie to talk, talk, talk to Ashley, and Julie did. The oral method demands that a parent -- almost always, the mother -- work nearly full-time to immerse the child in spoken language. Julie borrowed an FM unit from the Center; she'd speak into a microphone, which broadcast to a receiver that Ashley carried. They went on "listening walks," in which Julie tried to make Ashley recognize the very concept of sound: the low rumble of a nearby jet, the sharp bark of a dog, even the roar of the lawnmower as Julie mowed the grass. Sometimes Ashley seemed to hear them.
Twice a week, Julie and Ashley visited Nan; often, Blake came along and watched as Nan played games with Ashley, rewarding her with praise and candy. Ashley sparkled under Nan's attention -- so much so that Blake sometimes felt left out, even jealous.
Bryce was born in June 1995. Julie and Greg had his hearing tested, and were nervous when preliminary tests indicated he too might have a loss. But an ABR -- the same sleeping test that had shown Ashley to be deaf -- showed that Bryce's hearing was fine. Julie and Greg were immensely relieved.
Carol Rouly continued to visit, and one day, she left a card showing a few words in Signed English: "mom," "dad" and "brother."
The signs tantalized Julie. As Ashley approached her second birthday, she clearly wanted to communicate. She couldn't specify something as simple as what she felt like eating; Julie would carry her from cabinet to cabinet, waiting for her to point to something on a shelf. At other times, Ashley would babble, apparently trying to make herself understood. After that failed, she grew angry and threw herself on the floor, tossing her head, screaming and crying. When Julie picked her up, she'd go limp.
Julie told Carol that Ashley knew the household rules and violated them anyway, but Carol didn't accept that explanation. How, she asked Julie, could Ashley know that another child was allowed to play with her toy if she put it down? Had anyone ever told her in a way that she could understand? Ashley needed language so that she could understand discipline.
Besides, Carol argued, Ashley needed language -- her developing brain was hungry for input, and children deprived of any kind of language, during critical periods of development, risked being retarded. Teach her sign now, Carol urged, then let her learn English as a second language.
Finally, in October '95, Julie told Greg that Ashley needed to learn a few signs; they'd still try the oral method, but at the same time, she could try a different strategy. Ashley took to signing quickly, and soon used the signs for Mom, Dad, eat, drink and cookie. She learned to sign her own name by putting her fist to her cheek -- the letter A, for Ashley. Bryce's name she signed by making the letter B against her cheek; Blake's was also a letter B, only this time higher, against her temple.
Almost immediately, Ashley seemed happier -- even more affectionate and readier to cuddle. She soon picked up abstract concepts, like "where" -- one that many non-signing deaf kids don't learn until they're six or seven. Ashley could sign, "Where is Daddy?" and Julie could reply "work" or "sleeping"-- a level of communication she couldn't imagine using only pictures and pointing.
Julie told herself that signing was only temporary, a stopgap measure to help Ashley until the oral method caught fire. Julie liked being able to explain things to Ashley; but when Ashley began to string signs together, six or seven in a sentence, Julie began to worry that perhaps Ashley was learning sign too well.
Ashley, Julie promised herself, would someday speak. But in the meantime, Carol's signs had earned an important place in Ashley's life.
Greg, a beefy, all-guy kind of guy, manages electronics stores for a large chain. In general, his assignments last about two years. In eight years, he's been posted around Texas and the Midwest, and Julie has grown very practiced at packing and unpacking.
For years, Greg's bosses had tried to send him to Houston, but he'd resisted: He and Julie preferred small towns, quiet little places near woods for hunting and water for fishing. On Greg's days off, they liked to go camping, or biking, or boating. Houston is big, and expensive, and hardly an outdoorsman's dream. At first, the only thing in the city's favor was that both of Greg's parents, and their new spouses, lived in Houston; but the Center for Hearing and Speech began to weigh heavily in the Younts' calculations.
In June of last year, the chain once again asked Greg to transfer -- this time, to a store in the Galleria area. He accepted.
Julie had mixed feelings about the move. She loved their house in Beaumont, and when she'd lived in Houston before, she hadn't liked the city. Too, she'd finally grown convinced that Ashley should learn some sign, if only until she mastered spoken English. And Houston, she found, didn't have any ready equivalent to Carol and the Co-op.
But at the Center's support-group meeting, at the end of June, Julie betrayed none of those qualms. In a sleeveless blouse, and with her hair in a ponytail, she looked like a camp counselor, and sounded every bit as exuberant.
"Have you heard?" she asked the group as a whole. "We're moving!" Gayle Stout -- the Center's educational audiology coordinator, and the leader of the support group -- led a round of applause. Now, when Ashley turned three, she could join the Center's daycare; and now, Gayle told Julie, if Ashley turned out to be a good candidate for a cochlear implant, she'd have the right kind of educational system to support her.
Gayle is an elegant, middle-aged woman, a careful dresser with artful silver streaks in her dark hair. She radiates empathy and enthusiasm -- qualities useful in her job.
A trained audiologist, Gayle started volunteering at the Center in 1975; a year later, she went on staff. Somewhat to her surprise, not only has the Center given her a career, she's found herself at the forefront of her tiny field. Along with the Center's Jill Windle, a speech pathologist, Gayle developed a program called the Developmental Approach to Successful Listening -- DASL, pronounced "dazzle." Its improvement over other oral-education programs was to break the steps of learning to hear and speak into extremely small components; the program describes a journey of a thousand small but well-defined steps.
DASL teaches a child to deploy whatever residual hearing he has. "Every little bit of hearing helps" is Gayle's mantra; over a matter of years, her program aims to teach children not just the vowels and consonants of speech, but also the differences in pitch and volume that hearing people take for granted.
Sometimes, though, there were failures: children who, for whatever reason, stopped progressing. The Center videotapes its children at various stages in their learning. Gayle, who glows when one of her successes appears on the TV screen, grows sad at a tape from the '80s showing Garuv -- a bright, profoundly deaf boy, with a deeply committed mother. He learned to notice sounds, and then to distinguish among sounds, and to put the sounds together into words and phrases. He could even match phrases in verbal multiple-choice tests. But he stalled at the very last phase of the program: He was never able to understand phrases that he didn't know were coming. In the end, Gayle was forced to recommend that his mother transfer him to a signing program.
Now, Gayle says, cheering a little, a Garuv would be an excellent candidate for a cochlear implant -- a device that has changed her life, and the Center's chance of success. In 1985, Gayle received a call from her husband's partner, Dr. Edward Maddox III. He was one of the doctors who planned to test the single-channel cochlear implant, but as he told Gayle, he knew nothing about teaching the deaf. After watching the Center, he realized how important it was that kids be trained to use their new hearing. He began to refer his new patients to the Center.
Twelve years later, the Cochlear Corporation -- the company that makes the Nucleus-22, the only implant the FDA has approved for children -- is publishing Gayle and Jill Windle's book on DASL. Gayle has literally written the book on educating children with cochlear implants.
"My feeling is that children should have implants, and should have them at an early age," Gayle says without a shred of doubt. She believes that if a good candidate for an implant receives one early enough, the odds that he or she will learn to talk are quite high: 80 or 90 percent. "Of course," says Gayle, "I'm an optimist."
When Ashley showed no progress with her hearing aid, Gayle believed she might be a good candidate. There were lots of ifs: If a CAT scan showed that her cochlea -- the snail-shaped organ that translates sound waves into nerve impulses -- was in good shape. If Ashley's hearing loss was almost complete, because the implant would destroy any natural hearing she had left in that ear. If Julie and Greg were willing to commit themselves to an oral program, and give up signing.
The next step would be to test Ashley. Julie scheduled appointment after appointment -- only to have the tests canceled because of Ashley's repeated ear infections. For months, she and Greg waited, wondering whether the most extreme option to bring Ashley into the hearing world was even possible for them.
At the Houston store, for the first time, Greg found himself supervising a deaf employee: Dana Mallory, a signer. Dana is a service technician; he cleans VCRs, unjams CD players and tests other devices.
Communication between the deaf and the hearing can be frustrating, even when both parties have the best of intentions. For staff meetings, Greg hires a sign-language interpreter; it's a measure required by the Americans with Disabilities Act. More difficult are Dana's interactions with customers: His job requires him to teach people to use the electronic gizmos the store sells -- a difficult task even when both parties can speak and hear perfectly. Usually, Dana has customers write their questions, and he responds, likewise, in writing. Some customers are impressed by the store's commitment to hiring the deaf; others are irritated, even frightened, and ask for a hearing person to help them.
Dana's literacy is notable, since many of the Deaf never conquer written English. ASL has no written form, and to most signers, English is a foreign language, with a difficult grammar, bizarre idioms and incomprehensible spelling. (One study found that 70 percent of incoming Gallaudet students were unable to comprehend a college-level textbook.)
Obviously, English literacy is a boon to a Deaf person who wants to work in the larger world. Because he can read and write, Dana can follow captioned TV programs, and is able to place and receive phone calls using a TTY -- basically, a computer keyboard, screen and modem. To place a call to Dana, a hearing person dials an 800 number for a relay operator, who in turn calls Dana's number. The operator types in the caller's words, which appear on Dana's screen. Then as he types, she reads aloud his response.
Dana's English has the deep strangeness of a foreigner's. For instance, to the question, "How has being deaf affected your life?" he replied, "Is really happy. We have my future wife -- fiancee -- she is deaf. That is why we're excited. Wedding -- Jan. 18, 1997 -- had helpful. Prefer easy communication."
Everyone prefers easy communication, especially with the people closest to them. If Dana someday has children, hearing or deaf, he plans to teach them to sign; he wants them to be comfortable among the Deaf. Just as naturally, Greg wants Ashley to speak -- and to live comfortably in his world.
From a friend, Julie heard of Woodhaven Baptist, a mission church established by First Baptist to minister to the deaf and their families. Woodhaven, with its 350 members, is the only deaf church in Houston. It's an unabashed bastion of Deaf culture, a place where ASL reigns. Services are conducted in sign; a voice interpreter translates for the hearing.
Julie thought it would be a good place for Ashley to learn sign. A few months after moving to Houston, Julie trundled Greg and the kids to a Sunday morning service. Julie knew more sign language than Greg -- for nearly a year, she'd tried to master five new signs a day -- but she was still a long way from fluency. When she dropped the kids off at the church nursery, the woman in charge shook her head no when Julie tried to speak to her. Instead, Julie communicated, uncomfortably, in sign.
Later, a church acquaintance told Julie that the woman in the nursery could understand speech; she just didn't want to use it. Julie felt rejected. For once, the tables were turned: The Deaf, who so often felt like unwelcome outsiders in the hearing world, made the hearing feel unwelcome in the Deaf world.
The Younts never went back to Woodhaven.
Around Ashley's third birthday, audiologists were finally able to test her hearing more precisely. The results weren't good. Her hearing loss was profound, meaning that even with high-powered hearing aids, she'd barely notice a jet engine blasting at close range. The sounds of normal speech were out of the question. The times when Julie and Greg thought Ashley had heard were flukes, or perhaps showed Ashley's acute awareness of vibrations and shadows.
Gayle Stout told Julie that, pending a few more tests, Ashley might be a good candidate for a cochlear implant. The tests confirmed Gayle: In late August, a CAT scan showed that Ashley's cochlea could support an implant. And in September, a developmental evaluation showed that Ashley was bright, lacking only language skills -- in other words, capable of making use of an implant. (Ashley also demonstrated a full complement of three-year-old stubbornness: Some of the scores, the report noted, were probably too low, since she simply refused to do some of the things she was asked.)
Julie scheduled a conference with Ashley's otologist, Dr. Daniel Franklin, so he could explain the implant's pros and cons to the adults in Ashley's family: Julie and Greg, plus both sets of Ashley's Houston grandparents. Besides the family, there was also a delegation from the Center, including Nan and Gayle, plus Rose Chmiel-Hardcastle, an audiologist at Methodist who works with cochlear-implant patients.
"Are you excited?" Julie asked Jerry Yount, Greg's dad, in the waiting room. "I'm excited."
The doctor's conference room barely held everyone; a nurse had to scrounge for extra chairs. When Franklin entered, he exuded medical authority at odds with his boyishness: He wore a white jacket over his scrubs, and had a surgeon's lamp draped over his neck. He seemed amused by the show of support. "Ashley draws a crowd," he joked.
Franklin explained how the implant works. In a hearing person, the cochlea, a snail-shaped organ, translates sound waves into the electrical signals that travel to the brain. The cochlear implant simulates the process. The user wears a microphone that hooks over the implanted ear, and looks something like a conventional hearing aid. The mike sends sound information to a computer "brain," about the size of a Walkman, that the wearer can carry in a backpack, or hooked to a belt, or even stuffed in her bra. The "brain" digitizes the sound and processes it according to the wearer's particular preferences. That information then travels to a "transmitting coil" -- a round piece that attaches magnetically to the implant inside the wearer's skull. The coil beams an FM signal to the receiver inside; and the receiver sends the information through a flexible tube containing 22 electrodes, each of which stimulates different nerve fibers in the cochlea.
Even if the implant works perfectly, Franklin explained, Ashley wouldn't "hear" in the way that hearing people do. The implant's 22 electrodes can't reproduce all the subtleties conveyed to a hearing person by thousands of hair cells and nerves. Adults who've lost their hearing, then received an implant, say that voices sound as though they've been computerized. Most likely, the implant would bring Ashley's hearing to the mid-range of normal speech; she'd probably miss light, high-pitched sounds like s's, f's and th's, but would be able to hear almost everything else.
The computerized "brain" would need to be adjusted periodically, as Ashley learned to hear. And that, Franklin explained, would mean regular visits to Rose Chmiel-Hardcastle's office. In fact, it wouldn't be until after the first visit to Rose -- more than a month after the surgery -- that the implant would be turned on.
"If we move," Greg asked, "can we still find people who tune it?"
Yes, Franklin said, but moving wouldn't be a good idea. The surgery wouldn't be the hard part for Ashley; the hard part would be teaching her to use the implant. It takes about a year for a child to develop the neural networks needed to make sense of sound -- learning that most people do in their infancy. And even after that year, Ashley would likely need the Center's specialized help.
Gayle chimed in. "It would be better, if you move, to move to a big city rather than a little town. There aren't that many oral schools. Also, if you could not move for about two years, that would be nice."
Greg absorbed the information gravely. Staying in Houston meant a significant sacrifice.
Joe Yanazco, the funny, joking grandfather who spoils Ashley most, asked his question: "After this, no sign language?"
"Yes," Franklin replied without hesitation. "No sign language."
Julie asked which ear the implant would go in. Franklin suggested the right ear -- even though that's the ear that has slightly more residual hearing, which the implant would destroy. The right has better wiring to the auditory cortex, he explained. And Gayle noted, gently, that even in Ashley's better ear, there was basically no hearing to lose. "If you decide to not to get the cochlear implant, I'd have to recommend that you put her in a signing program."
"You have to realize that that's a real option," said Franklin. But no one in the room argued in its favor.
"I don't do these implants because it's great surgery," the doctor continued. "I do it because it's a way to get children into the hearing world."
The family was convinced: If there were a chance Ashley could join the hearing world, they wanted to take it. Julie scheduled surgery for the next Friday.
The surgery was canceled three times, always because Ashley had an ear infection. As fall turned to winter, Julie grew impatient, anxious for Ashley to hear in time for Christmas.
Finally, around dawn on November 20, Ashley was pronounced free of infection, and ready for pre-op. Her relatives and well-wishers filled nearly a third of the waiting room at St. Luke's. Nan Thompson, the therapist, brought bagels; Joe and Earlene brought a family friend; Denise Yount, Greg's stepmother, carried a mystery novel; Ann Goodpaster, Julie's own mom, had traveled all the way from Missouri. In honor of the occasion, Julie wore a gauzy, off-white dress, rather than her usual shorts or jeans. Greg lugged their video camera.
At 8:15, the operating team took Ashley into surgery. In the waiting room, the group chatted, determined not to look nervous. They talked about the venison in Joe and Earlene's freezer, about Bryce's first haircut, about Cricket and Danny on The Young and the Restless.
Every half hour, a nurse from the operating room phoned the waiting room and delivered a bulletin to Julie. At 11:15 a.m., the nurse reported that they'd finished drilling into Ashley's skull, and were safely past the craniofacial nerve. (A false move could have paralyzed Ashley's face.) They'd just begun inserting the implant into Ashley's cochlea.
At 11:50, the nurses called to report that they were closing and bandaging Ashley, and that everything was fine.
An hour later, Dr. Franklin finally appeared, dressed in blue scrubs. Ashley's group gathered around him, hungry for news. The report, Franklin said, was good: Ashley's insertion had been almost the best possible. He'd managed to get in not only all 22 electrode bands, but also five backups.
Nan was jubilant: "I've never heard it so good!" she said; most implant users get by on fewer working electrodes. "She's gonna be hearing so much!"
Julie hugged the surgeon. Everyone hugged Julie. Ann cried, and Julie daubed her eyes.
Almost a month later, Ashley's team gathered once again, this time, in the office of audiologist Rose Chmiel-Hardcastle. Ashley's long blond hair covered the patch of scalp that had been shaved for the implant; she looked her usual stubborn self, perfectly happy to be surrounded by her parents, grandparents and adults from the Center.
In the waiting room, Julie pulled out Ashley's stuffed lion, equipped with a toy cochlear implant. She signed to Ashley: "Ashley, where's your hearing aid? This will be yours." And with that, she handed the lion's implant to Ashley.
When Rose was ready, the group crammed into her little office. One wall was covered with kids' photos. On close inspection, you could see that all were wearing cochlear implants.
As Greg set up a tripod for the family video camera, Rose explained that today, she'd be testing half the electrodes in Ashley's implant, to see how many worked and to get a baseline reading so that the implant could be tuned to Ashley's liking; tomorrow, she'd test the other half. She explained that, to a new implant user, sound is startling and loud. Today, she'd set the processing unit to a relatively quiet, comfortable level. Over the next few days, as Ashley learned to deal with the data flooding her brain, Rose would gradually turn up the volume.
She produced the cochlear processor, the dark gray box that looks like a Walkman, plus its attendant mike. Julie compared the full-size implant to the stuffed lion's: "That one's Ashley's," Julie signed. "It's for you." Ashley, sitting at a child-size table beside Rose's desk, looked more interested in the toys Rose keeps in her office.
Rose showed them how to put on the implant's outer pieces, hooking the mike over Ashley's ear, then holding the round transmitter near the spot where the implant lay under Ashley's scalp. Each of the two parts contains a magnet, and when Rose let go of the external piece, it seemed to slide itself into place -- an odd, science-fictiony movement.
Rose, though, wasn't going to test the outer components. Instead of using the implant's mike, she used her computer setup to send electricity directly to the implant's individual electrodes. That way, she could tell whether each was working.
She started with Electrode 16. Because the electrodes stimulate different areas of the cochlea, they each trigger a different pitch; Electrode 1 is the highest, Electrode 22, the lowest.
The room grew quiet. Rose explained that it was okay to talk. Because the microphone on Ashley's implant was turned off, she couldn't be distracted by sounds in the room. All she would hear was a pure tone, generated electrically by Rose's machine -- a tone detectable to no one else in the room.
Rose explained that she was starting quietly at first; she didn't want to startle Ashley. She slowly turned up the volume. The machine's levels, she explained, ranged from 0 all the way up to 239. "Cool," Greg said.
At 72, Ashley touched her ear. Maybe she'd heard something; maybe not.
Denise reached to hold Jerry's hand. Julie kept her eyes locked on Ashley.
At 80, Ashley stopped playing. Rose noted that she was acting a bit different -- probably, she'd heard something.
Rose moved onto another electrode. At 90, she couldn't tell whether Ashley heard anything. She turned it to 95, then 100. "Crank that baby up!" said Greg.
Ashley grew quiet and sucked her finger.
At 115, her face suddenly crumpled. For the first time in her life, a sound was too loud. She began to cry.
The room erupted into brief, relieved laughter. Ashley had heard. Absolutely. Positively. She was on her way to a life among the hearing.
At the end of the appointment, Rose turned the implant on. Ashley wore it home, listening all the way to the voices of the people who love her.
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