Hope for Deaf-Blind Triplets — Light in the Dark
How parents of triplets found hope in a dismal situation.
There are three small beds in the triplets’ lavender-painted room, but Zoe often sacks out in a beanbag chair. Emma prefers the toy box, if she sleeps at all. Some nights, she spends hours jumping up and down, scattering blankets and playthings as far as she can toss them. Only Sophie, whose remnant of vision allows her to see shapes at close range, remains tucked under her covers most nights. To her sisters, “bed” is a meaningless concept.
The world’s only deaf-blind triplets are seven years old. Tests show they have normal intelligence, but sensory deprivation has severely delayed their development. Though Sophie can navigate familiar spaces on her own, she speaks in three-word sentences and uses sign language at the level of a kindergartner. Emma can sign just four words and say her name, as well as “Mama” and “Dada.” Zoe signs more than a dozen words but says only one: “go.” Like Emma, she is still in diapers.
Until recently, mornings in Liz and George Hooker’s suburban Houston home tended to be utterly chaotic. The girls’ mother and stepfather woke at 5:30. While George straightened the bedroom, Liz bathed and dressed the triplets — a process that would challenge the reflexes of an NBA forward. She had to guess what the girls wanted to eat; when she was wrong, food ended up on the floor. At breakfast, Zoe would sit with her forehead on the table; to stimulate herself, she’d rock, press her thumbs into her eyeballs, and make rasping and buzzing sounds. Emma would swivel her face from side to side, cawing and chirping.
In the midst of it all, big sister Sarah, 11, had trouble getting anyone’s attention. If she needed advice on her math homework or a preteen social dilemma, she had to wait.
The school bus arrived at seven to ferry the triplets to a special-ed program that seemed ill-equipped to help them. “By then,” says Liz, “we were ready to collapse.” Instead she and George did chores, squeezed in freelance work, and stole stray moments for their larger mission: freeing the triplets — and other kids like them — from their suffocating prison.
Over the past year, however, the Hookers have begun to recruit help for their cause. They’ve scored some surprising victories. And the family’s days have begun taking on a very different rhythm.
Of the 45,000 deaf-blind people in the United States, an estimated 11,000 are children. The causes range from genetic disorders to household accidents. The triplets, born on April 30, 2000, when Liz was only 24 weeks pregnant, spent their first months in the hospital. As sometimes happens with extreme preemies, their eyes were damaged by an abnormal growth of blood vessels. Later, to prevent a potentially lethal infection, the girls were given a cocktail of antibiotics. The medication had a devastating though gradual side effect: destruction of the follicles — tiny hairs responsible for hearing and balance — lining their inner ears.
At first, Liz knew only that the triplets were blind, and she put her career as a video producer on hold to care for them. The upheaval sent her troubled first marriage into a tailspin (she and her husband at the time eventually divorced). It wasn’t until the girls were 20 months old that she realized something else was wrong. They’d been learning their first words and taking steps, but they stopped talking and even sitting up. All three furiously banged their heads on the floor. When she received their final diagnosis, Liz lay facedown in the living room and screamed. “I had dreams for them,” she says. “I was going to teach them to dance. It felt like the end of the world.”
Though the triplets’ sense of balance eventually returned, their deafness was permanent. Shortly before their third birthday, Liz had each of them fitted with a cochlear implant — a device that sends a signal to stimulate the auditory nerve. Implants can work wonders for some, but the triplets showed little response. Having been cut off from sensory input so early, they’d lost any ability to make sense of the sound the implants transmitted.
With three profoundly helpless toddlers to care for, Liz could barely attend to her own needs, let alone those of her older daughter. She fell into a deep depression. Then one day in 2003, she stumbled on an ex-boyfriend’s website and decided that revisiting the past might help her find a way forward. Liz and George had dated for two years in college, but his fear of commitment led her to end the relationship. She often wondered how life would have gone if she’d given her old flame another chance. George, it turned out, was also a video producer, and he lived close by. Summoning her courage, Liz gave him a call. On their first date, he confessed that he’d never gotten over her, and Liz realized she felt the same. She waited a week before she revealed the truth about her daughters, dreading that it would drive him away. It didn’t. “I’d done nothing but serve myself for 32 years,” George says. “Liz coming back changed everything. I just jumped right in.”
They married a year later and moved to the tidy suburb of Spring, Texas. George, who’d been earning $120,000 a year, cut back radically on his business to devote time to his new family.
George and Liz both knew the story of Helen Keller, who lost her sight and hearing to disease as a toddler and at seven was as unreachable as the triplets. As recounted in the Oscar-winning film The Miracle Worker, her salvation arrived in the person of Annie Sullivan — a teacher who remained Keller’s live-in companion for five decades. Sullivan harnessed the sense of touch to reconnect her student to the world. She brought Keller into contact with every element of her environment, using tactile sign language (spelled onto the skin) to translate the experience into words. The feral girl soon began her transformation into an astonishingly gifted human being.
Today, specialists like Annie Sullivan are known as intervenors. But their numbers are scarce, and their training is often minimal. In the United States, most intervenors take a two-day seminar, then learn on the job. Usually contracted by school districts, they work in the classroom rather than at a student’s home.
That wasn’t good enough for Liz and George. In fall 2003, they visited the Perkins School for the Blind, near Boston, where Keller had studied. There they met deaf-blind students whose academic accomplishments and social skills amazed them. One senior confided that he’d been just like their daughters when he was younger. “We said, ‘Now that we know what’s possible, we can’t stand for any less,'” George recalls. But the annual tuition for the live-in program — $225,000 per student — wasn’t covered by insurance and was far beyond their means.
Back in Texas, Liz and George signed the triplets up for a passel of enriching extracurriculars: aquatic therapy, massage therapy, horseback riding. Then they set out to find an Annie Sullivan of their own.
In a Wal-Mart near the Hookers’ home, McKenzie Levert is taking Zoe shopping. A long-limbed 28-year-old, Levert stoops to let Zoe squeeze a toothpaste tube and try on some ponytail holders. In the toy department, the little girl climbs into an electric mini-car. With Levert’s help, she presses the foot pedal. The ensuing collision is not serious, and Zoe signs, “More!”
Levert is a graduate of the two-year intervenor program at George Brown College in Toronto, Canada, widely regarded as the best in the world. She moved to the town of Spring to work one-on-one with the neediest of the triplets. At eight each weekday morning, she coaxes Zoe out of bed, then begins instructing her in the basics of daily living — everything from hygiene and food preparation to navigation and communication. After bath time and breakfast, Levert leads her charge upstairs to a room with a child-size table and a cubby full of learning aids.
Levert reinforces spoken words with tactile signs. For each activity — playing, baking, shopping — she hands Zoe a flash card with the word printed in Braille and a symbolic object (a ball, a whisk, a plastic bag) glued on for good measure. There are shape-sorting lessons, vocabulary drills and Play-Doh sessions. By four, when Levert heads home, Zoe has an air of happy exhaustion.
For Liz and George, snagging an intervenor like Levert wasn’t easy. Hiring three seemed impossible. The Hookers had decided they wanted a George Brown grad, but the going rate — $50,000 a year — exceeded the couple’s annual income, and no insurance policy would cover it. Other families, they knew, were in a similar bind.
So the couple started a nonprofit called the DeafBlind Children’s Fund. Their aim was to provide a miracle worker for any kid who required one. The fund’s first beneficiary, however, was to be the triplet whose frustration level seemed highest. Sophie was at last beginning to grasp at language; Emma seemed relatively serene. But when Zoe wanted something and couldn’t say what it was, she would punch herself in the face. “She had so much motivation,” George says, “and nowhere to direct it.”
In late 2006, the organization held its first fund-raiser, a charity golf tournament that netted enough to hire a George Brown alum for one year. Soon afterward, the couple went on the Dr. Phil show, and the celebrity therapist (after offering advice on handling their extraordinary stresses) announced that his personal foundation, in partnership with online lender Lowermybills.com, would put up $50,000 to cover the intervenor’s second year.
Levert reported for duty last March. Since then, Zoe has made remarkable progress. She can sign 15 words — five times as many as she learned in the years before Levert arrived. Once as nocturnal as Emma, she now sleeps soundly through the night. She’s calmer, and her attention span is longer. She can brush her teeth, get dressed and grab crackers for herself.
Someday Zoe may learn to conduct a conversation, read a book, even hold a job or get married. But for now, says Levert, “it’s amazing just to see her becoming a seven-year-old girl.”
Zoe isn’t the only member of the family whose life is improving. Thanks to Levert — and a team of part-time domestic aides from a newly expanded federal program for the disabled — the girls’ parents are freer to pursue their own work. Keeping the household afloat through video and design gigs, the couple has so far raised $125,000 for the DeafBlind Children’s Fund.
Liz and George can also now pay more attention to Sarah, whose math scores and smiles-to-scowls ratio have improved accordingly. They’re homeschooling her and Emma and sending Sophie to kindergarten at a private academy. The morning scramble for the school bus has ended.
Emma worked with a temp from George Brown this past winter. She is next in line for a long-term intervenor, followed by the deaf-blind daughter of another local family, then — ideally — by Sophie. Ultimately, the fund aims to help hundreds of children, but there are immigration issues regarding importing intervenors from Canada. The Hookers are lobbying legislators to amend the rules; they’re also supporting efforts to improve training for homegrown intervenors.
Meanwhile, Liz and George are thankful for the distance the family has traveled. At a neighborhood Tex-Mex restaurant one late-fall evening, a mariachi group serenades them. Emma’s face registers what appears to be pure bliss; she has lately begun to show an interest in music.
Her mother watches her wistfully. “Someday I’m going to be able to ask her what she’s been thinking all these years,” she muses. “I can’t wait to get inside my daughters’ heads.”