The school hallways are quiet except for the sound of violins coming from behind the cafeteria's closed doors. There, a group of third-graders is learning to play "Twinkle Twinkle Little Star." Although the strings don't always make the right sounds, you can hear the energy and concentration.
They're trying their best.
So is Drew Thomas.
The nine-year-old boy walks slowly past the principal's office and approaches the doors of the cafeteria. He stops in his tracks: "How I wonder what you are." He blinks his eyes and uses his right eye to look up, down, and around.
It looks as if Drew has stopped to listen.
"Go to Val-err-ieees's room," says his teacher, Valerie Blane, coming up behind him. She says it loudly, and signs it in American Sign Language (ASL), picking up Drew's hands and allowing him to feel the touch of the words against his skin.
Drew smiles, turns to the right, and begins walking down a nearby hallway. Valerie follows him.
Drew was born with very little hearing or vision–enough loss to classify him as deaf and blind. He doesn't stop in the hall to hear music. When Drew stops, he is using as many of his senses as he can to figure out which way to go.
Five minutes later, he finds his way to Valerie's classroom at the far end of Sangster Elementary School. Drew walks in knowingly. He heads for a blue plastic chair that has several textbooks held against the back with masking tape. Above the tape job–an idea Valerie had to keep him alert and leaning closer to his work–there is a note card that reads DREW.
Though Drew attends Sangster, a regular Fairfax County public school, his days are spent mostly apart from the other kids. His base is a special-education classroom with three children who have autism, a neurological disorder. Drew is not autistic, but his deafness and blindness give him many of the same challenges–he doesn't initiate play, he doesn't speak, he needs to stimulate his senses in ways like shaking his hands or jumping up and down.
Along with his head teacher, Melissa Anderson, Drew has four "itinerants"–teaching specialists who travel to schools to work one-on-one with kids with special needs. He has specialists for speech, vision, hearing, and occupational and physical therapy. Each works with Drew on skills like matching pictures or setting the table. Only Valerie, a hearing specialist, works with Drew every day, and today she plans to focus on listening and counting.
"Itinerant" is a misleading word for the amount of time Valerie spends with Drew and the progress she's made with him. Valerie's work is her passion. She has been teaching the deaf and blind for 28 years. One thing her work has taught her is that all deaf-and-blind children are different, and each requires a different approach.
There are an estimated 11,000 deaf-and-blind children in the United States, and 1 million deaf-and-blind adults. Each has a different degree of hearing and vision loss. Some have additional disabilities.
It took a few months for Valerie to learn to "read" Drew, to figure out his skill levels and how to reach him. Ý
At a round table, Drew has been cued by sign language to pull out his chair, sit down, and greet Valerie, which he does by placing his index finger to his forehead and lifting it outward.
Valerie starts by placing headphones over Drew's ears and pressing PLAY on a portable stereo. The music is very loud.
Sometimes Valerie will blast Peter, Paul, & Mary into Drew's ears, other times Enya or classical music. Today it's Judy Collins. When the listening exercise is finished and Valerie presses STOP on the stereo, Drew jerks his head toward her. He parts his lips and sings, "Ah-uh-ah-uh-ah-ah-ahhhhhhh."
They move on to numbers.
"Today we're going to count," Valerie says, raising her voice and positioning Drew's fingers into the sign for "count." It's doubtful he knows what "count" means, but the hope is after days of repeating the same sign with the same activity, a light will go on, and Drew will pair the two.
It's a slow process, but one with a goal: building a small vocabulary for Drew. "I know he'll communicate one day. I just know it," says Valerie.
She has reason to hope. The teachers had a breakthrough a few months earlier when Drew initiated a sign they had been teaching him for months. In his class, he has a trampoline he jumps on to help stimulate his senses. He also has two at home.
"I said, 'Don't let him on the trampoline until he does the sign for jump,' " Valerie recalls. For months, Drew's teachers would pick up his hand and do the sign with their hand over his.
One day, teacher Melissa Anderson signed to him, "What do you want?" Drew picked up his finger, placed it in his palm and began jumping it up and down.
"It was sort of a Helen Keller moment," says Valerie, referring to the scene in The Miracle Worker when Helen learns to associate water with the finger-spelling of the word.
Drew's teachers were screaming and hugging. "He understood that jumping had a name," Valerie says. "It was a huge step for Drew."
Valerie reaches across the table and pulls out foam rectangles. Each has a large number and a picture of the sign for that number at the top. On the bottom half are small holes that correspond with the number. She places the first piece of foam in front of Drew and runs his fingers over the hole.
"One," she says, leaning close to him and signing into his palm. Then she positions his fingers into the "one" sign and repeats the word. Next to him is a plastic container where she has placed two pegs–one red, the other green.
"Drew, put in one," she says, pulling one of his fingers up. "Red," she says, taking his index finger and brushing it against his lips. "Peg," she says, manipulating his finger to hit the center of his palm.
Drew studies the two pegs. Though he often works in silence, today he can't seem to get the songs of Judy Collins out of his head. Before he picks up the peg, he starts humming again, "Ah-uh-ah-uh-uh-uh." He pauses, chooses the red peg, and drags it along the foam until he finds the hole, squeezing it in.
"Good job, Drew," says Valerie, rubbing his back. It's a symbol of congratulations he can feel. He smiles and turns his head to get a look at her.
Many people assume if you are deaf and blind, you live in complete silence and darkness. It's not always true, says Cynthia Ingraham, regional representative of the Helen Keller National Center for Deaf Blind Youths and Adults. Most deaf-and-blind people have some residual hearing and vision.
Drew's left eye is completely dark and has no feeling in it. His right eye can see things less than a foot in front of him–anything beyond doesn't register. It's one reason why Valerie signs close to his face.
Compounding his vision impairment is the fact that Drew was born with small optic nerves. This creates a processing problem because the optic nerve is what sends messages from the eye to the brain.
Pediatric ophthalmologist David Seidman, Drew's doctor since he was four months old, says Drew may see, but sometimes what he sees is hard for him to process. And figuring out what he can and cannot see is a challenge in itself. "It's hard to know how sharp-sighted that limited vision is, because he can't communicate. He can't tell me what he sees," Seidman says.
As for his ears, he has a sensorineural hearing loss. This means Drew's inner ear–the portion of the ear that transfers sounds to the brain–also doesn't function properly. His right ear has mild loss in the low pitches (mostly vowel sounds) and severe loss in the high pitches (most consonants). His left ear has a profound hearing loss in the high pitches.
"In our language, the higher-frequency sounds carry the great majority of meaning," says Stephanie Thomas, an audiologist with Fairfax County Public Schools. "They code the meaning around the vowels. Not understanding them causes delays in basic skills development, which causes delays in language development."
In other words, when Valerie says, "Drew," chances are what he hears is "ooh." It's why teaching Drew sign language is important. It's giving Drew a voice.
After going through counting one through six, Valerie places a seventh foam rectangle in front of Drew. He waits for the next cue. She runs his fingers over the seven holes and places seven yellow pegs and seven blue ones in the container.
"Drew, put in seven yellow pegs," she says, signing each word with great force. He picks up the yellow pegs and begins pushing them into the holes. As he reaches for the sixth peg and tries to find the sixth hole, his expression changes. His mouth turns down, and his breathing grows heavier.
Valerie senses his frustration–he's getting tired of this lesson–and pats him on the back. "You can do it," she says.
After dragging the sixth peg around the board, he finds the space and pushes it in. His chest begins to heave, and he starts to cry.
"He may cry," says Valerie, "but he'll keep going. He has to know that I think he can do it even when he thinks he can't."
With his eyes welling up, Drew slides the seventh peg in. Valerie runs the fingertips of his left hand over the tops of the pegs while signing the numbers with his right hand. "One, two, three, four, five, six, seven," she says, rubbing her hand on his head. "Good job, Drew. Yaaaaaaaay, Drew."
When they finish their hour of work, Valerie takes out an index card and makes notes of his progress to send back to his teacher and then home to his parents. She includes a piece of paper they practiced writing his name on in six different colors while she guided him.
When Valerie began teaching Drew two years ago, he couldn't sit still for more than ten minutes. He didn't know how to use a fork or understand enough signs to be able to count. And while a team of educators is responsible for Drew's successes, Valerie has given Drew the discipline necessary to learn. She plays down her role. "When the student is ready, the teacher will come," she says, quoting an old Zen phrase.
That evening, Drew arrives home, full of energy, to the family's brick Colonial in Fairfax Station. His father, Michael, picked him up after a 50-minute commute from his job as principal of Westbrook Elementary School in Bethesda.
The puffiness under Michael's eyes is due to lack of sleep. Drew doesn't sleep through the night like other kids. His sensory loss has him on a different clock.
Last night, he woke up at 2:30 AM. Drew and his dad were up for a few hours before Drew finally fell back asleep. Sometimes Drew will get up, go downstairs, and eat whatever he can reach in the refrigerator.
Before Michael can get inside the front door, Drew squeezes past him. He throws his coat on the living room floor, drops his backpack, and runs into the kitchen. His mother, Karen, is stirring a bowl of grits, and when she sees him she puts a spoonful in his mouth. Mixed into the hot porridge are two crushed pills to keep Drew from having seizures.
After a few bites, Drew runs into the dining room, peels off his clothes, steps out of his sneakers and socks, and pops out his hearing aids.
Within seconds, he is up the stairs and jumping on his trampoline in nothing but a pair of black shorts his father helped him put on. When you can't see or hear, your other senses–taste, touch, and smell–work extra hard to fulfill sensory needs.
His parents believe Drew likes to take off his clothes and shoes because his sense of touch has been cooped up all day at school. Now, he can feel the soft loops of the rug under his toes and a light breeze roll across his chest when he runs. At school, when he is upset, his teachers massage scented lotions onto his arms and legs and he calms down.
As Drew jumps on the trampoline, he giggles as if someone is tickling him. With each landing his feet feel the smooth stretch of the nylon bottom.
Jumping feels good, some occupational therapists believe, because Drew is engaging sixth and seventh senses that the typical person takes for granted. One is the proprioceptive "sense," which is the movement or compression of a joint. The other is vestibular motion, which gives us balance.
In the basement, Drew's 13-year-old brother, Aaron, is downloading as many songs from Napster as possible before the Web site shuts down. On the main floor, Karen goes into Drew's backpack and pulls out the long strip on which he wrote his name. She has dozens of these around the house and one in her office at the National Renewable Energy Lab in the District.
"Valerie gives us so much hope," says Karen while cutting a slice of pizza into squares for Drew. "She understands that it might be the millionth time he writes his name that he'll get it. His progress is small, but for us it is very meaningful."
After ten minutes of making the kitchen ceiling shake with his jumps, Drew runs downstairs and grabs his father's arm.
"Where is my boy who is nine but still likes to be held like he's three?" asks Michael, with Drew jumping into his arms and nuzzling his face into his father's neck. Michael has the same long eyelashes as Drew, lashes that give their faces a cherubic quality. But now that he's 46, gray has begun to salt Michael's black hair.
Drew pulls back so he is face to face with his father and runs his hands along his dad's rough beard. It's a touch that has become a favorite. He can't seem to get enough of the contrast of the stubble against his soft hand.
Drew wiggles out of Michael's arms and tugs on the sleeve of his dress shirt–a gesture he began using at age two to get his father's attention. As a young child, Drew–frustrated with not being able to communicate–would scrape his head against the floor so hard his forehead bled.
Parents of deaf-and-blind kids often develop their own "language" to communicate with their child. Karen and Michael converse with Drew through gestures. He pulls on their sleeve or hand and leads them to where he wants to be–whether it is the bathtub or the play set outside. If he wants a drink, he'll go as far as opening the refrigerator and taking out the orange juice. Things became easier when Drew began doing the signs for "eat" and "drink" at age three. Michael and Karen know basic signs but aren't trained in American Sign Language.
Michael bends down, leaning close to Drew's face, and speaks loudly. "What do you want?" Drew lifts his hand to his mouth and taps it several times.
"Eat," says Karen, bringing the pizza to the oak table. "He wants to eat."
Karen and Michael never expected their lives to be this way. The two met in college 22 years ago. Michael's good friend was a friend of Karen's at Virginia Commonwealth University in Richmond. Michael went to Virginia State University in Petersburg. But they didn't date until years later when they ran into each other at another friend's wedding.
"I had always thought he was so sweet," says Karen. They danced, chatted, played catch-up. And Karen didn't let the night end without getting his phone number. They were married less than two years later.
At the time, Michael was teaching art in Montgomery County and pursuing a career as a painter. He had shows at the Art Barn in Rock Creek Park and other local galleries. Karen's dream was to have a family.
A year after they were married, Karen began trying to get pregnant. After six months of frustration, a series of tests revealed that her fallopian tubes were blocked, making it hard for an egg to travel from her ovaries to her uterus.
The doctors suggested an operation to reopen her fallopian tubes. She had the procedure done, but the tubes closed again soon after.
Karen and Michael were growing impatient. They decided to adopt. A few months later, they adopted Aaron, who was born in Alexandria Hospital on a Sunday and brought home to their Springfield townhouse three days later. For the next few years, life for Karen and Michael was centered around raising their new baby. He learned to crawl, then walk, then talk.
"He learned so fast, he was just so smart," says Karen.
But there was an aching inside of her. "Michael and I were so in love, we wanted to have another child," she says. "It might sound selfish, but I wanted to carry a baby inside of me."
Karen returned to her fertility doctor who suggested the couple consider in vitro fertilization. They were running out of options, the doctor said. If they conceived through in vitro fertilization, it would still be their child. The process would use Michael's sperm and her egg, bypassing the tubes and implanting the embryo directly into her uterus. They decided to give it a chance.
She miscarried once, and they tried again. This time Karen became pregnant with Drew.
From his conception, Drew has given Karen and Michael reason to pray. In the beginning, it was prayer for his survival.
Since 1981, nearly 24,000 babies have been conceived through in vitro fertilization. But there are high rates of miscarriage, the doctors told Karen. She was at even greater risk due to uterine fibroids that had troubled her since she was a teenager.
When Karen started having contractions at 20 weeks, midway through the pregnancy, they held their breath. She was told to go on bed rest and stayed there until her 34th week–juggling medications that worked at keeping the baby inside while trying to give attention to Aaron. He would often place his music box on her stomach, winding it up and letting it play its melody to the unborn baby.
"I think it was hard for him not to have Mommy all to himself, running after him and playing with him," says Michael, who would leave a cooler of food and soft drinks next to Karen's bed before going to work each day. She would spend most of her day laying on her left side because the blood flow was better for the baby.
"I didn't want to read or do anything. I was just too scared I was going to lose the baby," says Karen. "Instead, I would stare out the window and watch the leaves turn from green to orange to yellow."
At 34 weeks, she went into the hospital because the contractions were getting stronger. The doctors hooked up a fetal monitor machine to Drew's tiny heart to watch his heartbeat.
About one week after she first slid under the crisp sheets of her hospital bed, Karen's water broke. At 35 weeks, Drew was trying to push his way out. But the doctors didn't take her to the delivery room right away because they were trying to stall his birth for as long as possible. The following morning, a Monday, Michael was reading the newspaper next to Karen when the monitor began to beep, signaling the baby's heart was slowing down. Michael ran to get the doctors, who rushed Karen to the delivery room.
"They had to knock me out, but I knew his heart rate had to be at 90 to be okay. I heard them say 50, then 60," says Karen. "I was trying so hard to stay awake to hear if he was going to be okay. When the nurse finally yelled out 90, I knew it was fine. I closed my eyes and don't remember another thing."
The next day, when she saw Drew's five-pound body curled up in the incubator, she was relieved. He was a "preemie," but his Apgar scores (an index doctors use to measure a newborn's health) were high, and he had all his fingers and toes. The doctors said he was fine, but they were still worried about his heart. After Drew was born, they had attached his delicate body to a fetal monitor to check on his heartbeat.
"I thought once we got him home and off the apnea machine," Karen says, "it would all be over."
In the wall of the Thomases' FAMily room are four paintings: two watercolors by Michael, a large daisy with a fuchsia background by Aaron, and an abstract, in the spirit of Jackson Pollock, created by Drew. Each is framed.
"I used to dream that Drew would follow in his daddy's footsteps and become an artist," says Karen. But Karen says she has learned, as has Michael, that she would need to let go of some of the dreams.
When Drew was a few months old, Karen's parents noticed that his eyes didn't follow movement. When Karen and Michael were out of the room, Karen's sister and father would move things in front of his eyes. But they didn't say anything because they didn't want to alarm Karen and Michael.
At Drew's four-month checkup, his pediatrician noticed he didn't follow the light she shined in and around his eyes. She said not to worry–his vision would most likely develop–but referred the family to Dr. Seidman, a pediatric ophthalmologist.
Karen remembers the date: May 1, 1992, a Friday. At the time, she was upset picturing her "beautiful baby having to wear glasses."
After some standard eye exams, Seidman shined a light in Drew's eyes and saw that the optic nerves weren't fully developed. At six months, Drew went to a neurologist. An MRI scan of his brain revealed that his septum pellucidum was missing–a piece of the brain that, if missing, has little effect on some but can compound vision and hearing impairments in others.
Seidman referred Karen and Michael to the Virginia Department of the Blind. And a few weeks later they received a letter from the Virginia Department of Motor Vehicles certifying that Drew Thomas was legally blind and would never be able to obtain a driver's license.
"That was really different from hoping that everything would be okay," says Karen. "It was so definitive at that moment. We had turned a corner, and I knew life was never going to be the same."
Soon after, the kind of ache that was the impetus for Karen's pregnancy returned. Only now it wasn't an ache of longing, it was an ache of guilt. She began to blame herself–a reaction common among parents who have children with birth defects, says Cynthia Ingraham of the Helen Keller National Center.
Karen began to wonder: Did she eat the wrong foods? Should she not have taken the medication prescribed during pregnancy to slow down early contractions?
"There were so many what-ifs," she says. "I felt as if I were grieving the loss of one child and getting to know a different one."
A year later, when Drew was nearing his second birthday and still hadn't said his first word, his pediatrician suggested a hearing test.
"You don't even think it could be both," says Karen. But it was. At two years old, Drew was fitted for hearing aids to help amplify his hearing.
"I was happy it might help him hear better, but I couldn't stop crying," she says. "There was my little baby boy with these big brown things on his ears. All I could think of was how different he looked. How everyone would know he was different."
Drew's disabilities have never been connected to the medications Karen was on during her pregnancy. Nor are they related to his being conceived through in vitro fertilization. Doctors said that his dual sensory impairment was a birth defect, and Karen and Michael accepted that. Both believed they had to move on.
In this evening, seven years after the hearing diagnosis, Drew pulls Karen into the family room. They settle on the couch, where Drew curls into Karen's side, rubbing his head against her stomach. She positions her arm around him. Drew likes to have someone next to him at all times, says Karen. His world seems lonely if he can't feel someone near him, she believes.
When Michael returns home from dropping off Aaron at basketball practice, he leans over the couch to get a look at Drew. He is sleeping in Karen's lap.
"Did you give him a bath?" asks Michael.
"No, we better wake him up," says Karen, who begins to shake Drew gently. It's 7:30, and if they let him sleep, he'll wake up even earlier in the night than usual. When he doesn't respond, Michael picks him up and stands him on his feet. His eyes begin to flutter, and he stands up straight.
Karen leads Drew upstairs. Minutes later, he is splashing in the warm tub. Swimming is one of Drew's favorite activities. In the summer, he glides through water like a dolphin.
"The scary part is he doesn't understand that he can drown," says Michael, who says he has to keep a watchful eye on Drew and Aaron when they play together in the community pool.
Drew and Aaron have grown close. Drew isn't the typical little brother, but that doesn't stop Aaron from treating him that way. He'll tackle Drew and wrestle him to the floor or tickle him until Drew is laughing. As a small child, he would pull Drew into his room to sleep in his bed with him. And at Challenger Baseball, a league for kids with disabilities, Aaron holds his arms around Drew and helps him bat.
"The experience has made Aaron grow up quicker," says Michael. He was four when his little brother was brought home. Today, at 13, he is often called on to help dress his brother, or keep an eye on him, or give him his medicine.
Aaron has also lived through the tears, and in doing so he's developed a new family role–that of a wise soul. One day when Karen broke down crying, asking God why he would give her this child, an eight-year-old Aaron whispered, "Because he knew you would take care of it and love it."
Another time, when they were at a Burger King at a highway rest stop, a group of teenagers began making fun of the way Drew was flicking his hands around. Karen began to cry. Aaron leaned over and said, "It's okay, Mommy. They are just ignorant and don't know any better."
Most of all, Aaron keeps Karen and Michael connected to what they refer to as "the other world"–the one where parents of seventh-graders are already thinking about college athletic scholarships and the one where neighbors get together for a backyard barbecue.
For Karen and Michael, it feels as though Drew's disabilities deny him the experiences typical of a childhood–and deny them the chance to go through it with him. "You can't tell jokes with him, he doesn't anticipate Christmas, you can't take him to a movie," says Karen. "I don't know what we'd do if we didn't have Aaron to bring us back."
It's also been the "outside world" that has stirred pain in Karen and Michael's hearts. Some people get uncomfortable when they see Drew and won't acknowledge his presence. Drew's parents have separated themselves from some old friends because of the way they treated Drew once his disabilities were diagnosed–ignoring him or acting fearful of him.
Both Karen and Michael worry about Drew's future. They understand that the world can be harsh, and without them he won't be as protected. "Right now he is all cute and cuddly," says Karen. "But you have to wonder: Who is going to love this child when I'm gone?"
Drew has learned to deal with uncomfortable strangers, seeming to rely on a sixth sense to weed people out, Karen says. He will pick up on someone's discomfort and try to pull Karen or Michael away or run away himself.
"He's my eyes to the world," says Karen. "He's literally become my personal barometer on how I judge people. If Drew accepts them, I accept them."
Drew has never been invited to a birthday party. Nobody in the neighborhood knocks on the door asking him to play. Drew doesn't notice these things are absent from his life, but it's an exclusion that hurts Karen and Michael. A few years back, Michael was outside playing with the boys, and another parent wanted to get a photo of all the neighborhood kids. She called Aaron over, but not Drew.
"We could sit here and cry over it," says Michael. "We've certainly had our share of tears. But at some point, we've had to push past it and think about how we could give Drew the best quality of life, regardless."
For Michael, that has meant giving Drew as many "normal" experiences as he can. He lets Drew help him cook and takes him along grocery shopping. Each excursion turns into a learning experience. Drew is always excited to find the tomatoes and the bread and squeezes them, sometimes too hard.
"I won't tell you where I shop," jokes Michael.
The one-on-one time makes shopping and other activities take twice as long. For two working parents, slowing down means little time for much else. "The hardest part for us is we don't really have couple time," says Karen.
Stanley and Pat Lamb, Drew's godparents, have played a big role in Karen and Michael's life. The two couples have been friends since their early twenties, and their kids have grown up together.
"They are the only ones, the only ones we know who offer to watch Drew for an evening," says Karen. Finding a sitter has been challenging. She needs someone who will not only watch Drew but engage him and give him his medicine. Last December, when Karen and Michael's wedding anniversary rolled around, they hadn't been out together since the year before. The Lambs offered to sit.
"They don't even realize how much they mean to us," says Karen. "You start to realize early on you just can't do it alone."
For years, Karen had relied on her mother to watch Drew if one of them had to stay late at work or if Aaron had a basketball game she and Michael both wanted to attend. Karen's mother died of lung cancer in January.
"I think she was holding on because she was worried about leaving Drew," Karen says. "She used to say, 'One day, that boy is going to talk.' She thought he was capable of so much more than everyone else did."
When Drew was three years old, Michael was holding him in the kitchen. He noticed Drew was looking up at the light, so Michael pointed to the light and said, "Light."
Drew pointed to it. "Light," he said. It was his first word.
"He doesn't speak often," says Karen, "but when he does it's like these little miracles have taken place."
A few years later, they took a trip to Busch Gardens. It was a humid summer day, and the long lines were making the kids cranky. Karen had been fanning the boys' faces to keep them cool. When she stopped, Drew reached over and grabbed her hand and made her fan him. "Hot," he cried out. Another time, he screamed, "No, no, no," as a dentist attempted to get a look at his teeth.
"I think sometimes he uses words when he is in dire straits," says Karen. But his use of words is also testament to the amount of information in his brain searching for an outlet.
"The brain is an amazing thing," says Gail Kinsey, the principal of Sangster Elementary. "You never know what resources are in it, if they're going to come out, and when."
Drew's speech is a remnant of his early education at Camelot Elementary School, a public school in Annandale that has a program to teach deaf children to speak. He has a speech therapist who works with him at Sangster, but getting Drew to talk is not the goal. The goal has always been finding a way to help Drew communicate.
When Michael and Karen found out Drew was deaf and blind, the state suggested he begin schooling. Early intervention for kids with disabilities helps maximize their skills, say special-education experts. At the age of two, Drew boarded a yellow school bus and rode across the county to attend Camelot. The first morning, Karen and Michael drove behind the bus.
"That was the hardest part for me, harder than learning about his hearing and vision loss," says Michael. "You have to relinquish your child to someone else at such a young age."
At Camelot, the teachers had promised to have Drew talking in two weeks. Three years later, he had said but a handful of words.
When Drew was five, the Thomases switched him to Mantua Elementary School and Center, a "total communication" program where Drew would learn sign language. But Drew learned only a little sign language there, and two years later, Karen and Michael felt as if the school was trying to push Drew out.
Enrolling him in a school that specializes in working with deaf-and-blind students, such as the famed Perkins School for the Blind in Massachusetts, was an option. But Drew's parents didn't want to send him away from home. Informal studies done by the Helen Keller National Institute for the Deaf Blind show that deaf-blind kids sent away from home feel isolated from the people they trust most. The effects can be traumatic.
Because Michael is principal of an elementary school, he is savvy about educational entitlements. He knew that federal law said Drew didn't have to travel across the county to attend school. The Thomases started to think about sending him to a local public school–mostly because it went along with Michael's belief in giving Drew as many typical kid experiences as possible.
At a meeting in the spring of 1999 to update Drew's Individual Education Plan, a detailed plan that outlines his learning goals, Karen and Michael found what they were looking for. The meeting was organized by the Fairfax County school system, and representatives from three schools came to discuss how they could best meet Drew's needs. One was Mantua Elementary, which he was then attending. One was a "noncategorical" school–a school where children with different disabilities are educated together at various levels. Two other faces at the table were a special-education teacher and principal Gail Kinsey from Sangster. After a visit to Sangster and a review of their special-education teaching, Karen had a feeling Drew would excel there. Plus it was ten minutes away.
They enlisted the help of Together We Can, a Richmond-based resource center for parents of deaf-blind children. The group helped them win a one-on-one aide in the classroom to work on Drew's needs. The school put together a team of teachers, itinerants, and specialists to work with Drew–even the principal, Gail Kinsey, checks up on his progress.
It's been a winding road, one where Karen and Michael have worked hard because they believed in Drew's ability to learn if he was in the right environment and with the right teachers.
"For us, there is always hope," says Michael. "Hope that his vision will improve or that he'll learn to communicate better. If we ever gave up hope for Drew, it wouldn't feel right. I cannot imagine it not being a part of our life."
At 2:30 PM the next day, Drew leaves his classroom and walks down to School-Aged Child Care (SACC), the after-school program he attends at Sangster. The rest of the school lets out at 2:45, but Drew goes early so he can settle in before the other kids arrive.
When he enters through the glass door, Maureen Galvin, one of the SACC teachers, runs up to him. She has a head of reddish hair and freckles.
"Hey, Drew," she yells, throwing her arms around him and giving him a hug. He giggles and sits down on a small green sofa seat. He un-Velcros his sneakers and peels off his socks. By the time other kids filter in, he's jumping on his trampoline.
Most of the kids plop their stuff in cubbies and begin chatting. Some pull out snacks and nibble on cookies and Chee-tos. One girl named Kelsey, a sixth-grader, heads for Drew. "Hey, Drew," she says, watching him jump on his trampoline. A tiny first-grader named Tasha leans over and says, "Hi, Drewwww," elongating her "w" in an attempt to get his attention. Drew doesn't stop jumping, but he is smiling and laughing each moment he is in midair.
"Is that not joy in its purest form?" asks Galvin.
On the playground, Drew loves to pick up dirt and crumble it in his hands. One day last winter Drew was out on the playground running around. When the wind picked up, he stopped moving.
"You could see him feeling the wind on his face. There is a sense of wonder in Drew, a newness of discovery," says Galvin. "I've never seen anyone feel the wind like he did. It was just so neat."
Perhaps the person most in awe is Kelsey, the sixth-grader. She says she already knows that someday she wants to teach children with disabilities.
"Sometimes he'll color with me, and I can get him to give me high-fives," she says, brushing her long brown hair behind her shoulder. "They say people like Drew have the greatest minds. I watch him and wonder: What goes on inside of his head?"
Kelsey will also walk her hand up his arm like a spider and tickle him. And while he isn't "playing" in the typical sense, Kelsey knows he enjoys it. Sometimes he'll grab her arm and pull her around with him like he does with his parents.
"When he does that, it makes me feel really special," says Kelsey.
What will the future hold for Drew?
His parents hope that his education will prepare him to communicate one day and then to live and work independently in a group-home setting. As he gets older, things will invariably become more challenging.
For now, his parents are brushing off the future. They believe if they focus on getting Drew the best help today, it will enable him to do more tomorrow. At Sangster, he is getting that. And while he can't say "thank you," he gives back in his own way.
Says Sangster principal Gail Kinsey: "He's touched our school."
