Window Boy

by Andrea White

  The morning ended with circle time. Big Thomas wheeled his new charge to a spot on the rug. At one point, as the teachers read a story, Thomas looked back at his mother, then down at his wheel-chair tray, then toward the door and then back toward his mother again. His para didn’t know how to read his message, but Lora did. “He has to use the bathroom,’’ she said, and sped over to take him there.

  When the story was finished, and Thomas had returned, the teachers taught the children a getting-to-know-you kind of song. At the end of each stanza there came a pause designed for a child to say his name, which was then sung by the entire class. “Annaliese,’’ Annaliese said shyly. “Evan,’’ Evan trilled. “Taylor,’’ Taylor sang, bouncing.

  Richard saw the awkward moment looming and raced over to Thomas’s wheelchair to dig out an electronic device from the storage pouch in the back. He was frantically trying to turn it on and show Thomas the button that would cause the machine to speak his name when the teacher pointed their way. She could see that they were not ready, but she had no choice – she had saved Thomas for last, and the song was about to end. Thomas tried to do his part, and pushed the button, but his attempt resulted in silence.

  Flailing a little, he tried again. A deep, mechanical male voice, completely out of rhythm, said: “Hel-lo. My. Name. Is. Tho-mas.’’

  Thomas grinned in victory. Richard tightened his jaw in defeat.

  II. Learning to Advocate

  The Ellensons’ sleek three-bedroom apartment on the Upper East Side has no hallways and few interior walls. Every space is wide enough for a wheelchair to maneuver in easily, and if you stand in the living room, the kitchen, the dining area or the TV room, you can see into nearly every other room in the loftlike home. This way, Thomas, who cannot motor on his own, is never left behind. The Ellensons gutted the space and redesigned it five years ago. Becoming the parent of any child means figuratively reconstructing a life with the child at the center. Becoming the parent of a handicapped child means literally doing so, too.

  Thomas was the Ellensons’ firstborn. (Their daughter, Taite, who is “typically developing’’ – a phrase that parents and educators in this language-sensitive world prefer to “normal’’ – is 2.) Until Thomas’s birth, in September 1997, they knew virtually nothing about educational theory and practice for the disabled or about recent changes in the law and society that offer equal parts opportunity and frustration for the parents of children with special needs. Those changes began nearly 30 years ago, with the passage, in 1975, of federal legislation that has come to be called the Individuals With Disabilities Education Act, or I.D.E.A. Echoing the language of civil rights law, it required public schools to provide free education that met the special needs of students with disabilities. In practice, this resulted in the creation of separate classes, programs and even school wings for children with disabilities, who were then “mainstreamed’’ with their able-bodied peers at lunch or for music and occasionally for some academic lessons.

  In the ’90s, the legal backdrop changed again. Further amendments and court interpretations of I.D.E.A. required that disabled children be guaranteed the “least restrictive environment’’ in which they can learn. This has been taken to mean that a child will be placed in a general classroom unless the school district can document that educating that child would be impossible in that classroom even with “supplementary aids and services,’’ which the courts have defined broadly.

  Notably absent over the years from these laws and interpretations has been financing. The states receive some federal funds but must provide the rest of the resources themselves, sharing that responsibility with individual school districts according to complex formulas that vary in detail from place to place. Few districts have gone knocking on the doors of disabled children to offer a long list of expensive educational options. The effective outcome has been to place the onus largely on the shoulders of the parents. Across the country, the more vocal the parent, the more accommodating the school.

  In the years since Thomas was deprived of oxygen at birth, resulting in cerebral palsy, the Ellensons have learned how to advocate. They have come to understand that “the law says we have to be heard,’’ as Richard explained when we met at the opening of school. More important, though, the Ellensons have learned that the provisions of I.D.E.A. have to be reauthorized every five years and that Congress has yet to agree on the latest reauthorization. In other words, their protections are not guaranteed.

  From his first meeting with Wernikoff, Richard Ellenson stressed that his crusade was not merely about his child in this school this year. He and Lora are aware that they have been heard not only because they are articulate and untiring but also because they have resources and connections. And they said they feel a responsibility to children whose parents do not have those things. “We are not here just to build a good classroom,’’ he said. “We are here to build a program that can be recreated.’’

  In June 2003, Wernikoff and Ellenson set out to find a school that could be home to Thomas’s new classroom. Ellenson, who never met anyone whose contact information he didn’t keep, spread the word and received a suggestion from a lawyer named Tucker McCrady, whose daughter, Valente, was a fragile but spunky girl a year older than Thomas. Like Thomas, she was nonverbal and barely mobile but bright. Unlike Thomas, she suffered from a seizure disorder, which came on often and without warning.

  Valente had just completed kindergarten at the Manhattan School for Children. M.S.C. was founded in 1992 as part of the “small schools’’ movement, which brought about the subdivision of many large city public-school buildings into more manageable spaces. As a kindergartner, Valente was the only disabled child in her grade and up to that point, according to Susan Rappaport, the principal, “the most challenging student we had worked with.’’ Rappaport said that the school had not given Valente all she needed during her kindergarten year because though “we had people who were very good and worked very hard, we didn’t have the support system.’’ And it was not only Valente who needed more – more time with outside therapists, more classroom equipment adapted to her needs. The little girl’s teachers needed more as well. “They needed training and also moral support,’’ Rappaport said. “They needed to be part of a team instead of out there on their own.’’

  When Rappaport met with Ellenson, she told him she was eager to help. Together with Wernikoff, they decided that there should be two classrooms. Each class would be team-taught by two teachers – one with experience in kindergarten, the other with training in special ed. Having two classes would not only give the teachers an empathetic sounding board across the hall but also prevent the inclusive classroom from being stigmatized as the “special ed’’ classroom. The McCradys said they felt that this arrangement would benefit Valente and decided, for this and other reasons, to have her repeat kindergarten in one of those classes. Before long, two classrooms at M.S.C. were reserved for the program that Ellenson, ever the adman, branded “MotorVation.’’ They would be standard classrooms filled with adaptive furniture and wide aisles. A third, a small activity room, was also set aside for the children in the MotorVation program. It was called the Blue Sky Room, so two parents painted its walls a shimmery blue with puffy white clouds. Rather than pull the disabled children out of lessons to have physical therapy by themselves, the entire class could have organized exercises together in this room – treatment masquerading as fun.

  The teachers were chosen by mid-July of last year. Alysa Essenfeld and Tracy Chiou would teach in Classroom 503, which would be Valente’s class. Across the hall, in Classroom 506, would be Suzanne Blank, whose calm yet energetic manner had led M.S.C. kindergartners to fall in love with her for the five years she had been there, and Brooke Barr, who was new to M.S.C. but jumped at the chance to help initiate the program. Barr became a special-education teacher because her son, Matthew, who is now 12, was found to have severe autism. Classroom 506 is the kind of environment, she told me, that she wished
her own child could be in.

  There were two other disabled children signed up in Valente’s class – one who was moderately motor- and speech-impaired and another who had a degenerative bone disease and was learning to use headgear attached to a special stick to write, paint and draw. Initially, there was just one other disabled child in Thomas’s class, but on the second day her mother decided it was not a good fit and chose not to enroll her. That left only Thomas. His father spent a few days feverishly working the phones, and Thomas was soon joined by a boy named Fredy, afflicted with moderate cerebral palsy, and Danielle, who could drive her own motorized wheelchair and move on her own if she walked on her knees.

  When the first day of school began and Ellenson looked at what he had started, he saw the seeds of permanent change in special education. But Wernikoff had simpler goals. “We want these kids, all of them, to get high-quality instruction and be truly included,’’ she said. “You can be in the class. It’s another thing to be truly part of the class.’’

  III. Story Time

  It was story time in Classroom 506. Suzanne Blank gathered the students on the rug and placed the storybook on an easel up front. This book was not like any she used to teach kindergarten in the same classroom the year before. It was oversize – each page was two feet wide and two feet high. And the pages were laminated, with two Velcro strips along the bottom. On the top row of Velcro, words were attached forming the text of the story: “Who will help me plant this wheat?’’ asked the little red hen. “Not I!’’ said the duck. “Not I!’’ said the cat. “Not I!’’ said the dog. On the lower row was a series of pictures that corresponded to the words above. The word “duck’’ was represented by an image of a duck; the verb “plant’’ was represented by a hand putting a small plant into the ground.

  Children who cannot hear learn sign language. Children who cannot see learn Braille. Children who can hear but not speak, like Thomas, learn their own language too. The symbols used in Classroom 506 are known as Mayer-Johnson symbols – thousands of little pictures that represent words and actions and thoughts. Long before nonverbal children can write or read, they can recognize symbols that mean “I want’’ and “milk’’ and point to them to make themselves understood. Thomas had been immersed in these symbols since he was 1 year old. His wheelchair tray was filled with dozens of them – ways of saying yes, no, happy, mad, wash, play, eat, drink. His teachers were now using that foundation to teach him to read.

  A few days before each storyboarded book was read to the class, it was previewed for Thomas and Danielle, so they could learn the symbols for new words like wheat and hen. Those symbols were added to their Tech/Talk devices – Tech/Talk being one of a variety of brands of speech technology that let nonverbal children be heard. The Tech/Talk device is a box with a series of squares in which plastic strips with symbols are inserted. For each new book, a teacher would record the spoken word for each symbol into a digital recorder inside the box. So when the class chanted, in unison with the little red hen, “Then I will do it myself,’’ Thomas could press the appropriate button and join in.

  Producing these adapted texts was the never-ending job of Carol Goossens, an expert in “augmentative communication’’ – the art of providing means of expression to those who cannot speak. She had ambitious plans for helping Thomas when she first began, but as autumn turned to winter last year, it was all Goossens could do to keep up with adapting the books. “Everything about this was more complicated than we’d thought,’’ she said in November. “Even the experts are learning as we go.’’

  One unexpected complication that first term was that Thomas resisted using his personal communication device at school. Long before he started kindergarten, his parents had experimented with a variety of augmentative-communication devices and settled on a Fujitsu Tablet PC as the one he could most effectively use. By the time Thomas arrived at M.S.C., Richard had programmed countless words and phrases into the device. It was the Fujitsu that the family had scrambled to set up on the first day so that Thomas could “sing’’ along. By the second day, Ellenson had scanned digital photos of every child in the class into the Fujitsu, and he called them over as they arrived at school to show them that his son could “speak’’ their name. Once he had their attention, Thomas flipped to another folder in the machine and told his classmate a couple of jokes: What do you call a fairy that doesn’t take a bath? Stinkerbell. Why did the cow cross the road? To get to the mooovies.

  After a few days in Classroom 506, however, Thomas started insisting that the device be kept out of sight. He wasn’t much happier with the Tech/Talk that his teachers had prepared for story time, which meant that he could not really participate in class. His father could not understand Thomas’s resistance, but Goossens said she thought the reason was clear. “The device came with the risk that he would hit the wrong button and say something wrong,’’ she told me. While he was willing to take that risk in front of his parents, she speculated, “he didn’t want to do it in front of the other kids.’’

  Another early obstacle was deciding where and how Thomas should sit. Seating and positioning children with resistant or spastic muscles is something of an art. “If he could sit cross-legged on the floor and use his hands, it would change his life,’’ Lora said. But he can’t, and deciding where he should sit always involved a tradeoff. His custom-built wheelchair provided the support he needed, and gave him his best hand control, but left him several feet above his peers. On the other hand, a series of low-to-the-floor chairs that the school’s physical therapists provided for use at story time and for tablework brought him eye level with his peers but caused him to slouch and slump and made it all but impossible for him to use his hands. Thomas made it clear as the year went on that he wanted to be like the other children. He wanted to sit near the floor, whether he slumped or not, and when his classmates were writing with crayons and pencils, he wanted to use those things, too, even if he could produce only scattered scrawl. In other words, he wanted to sit in the least-supportive place and use the least-efficient tools. Yet becoming more like the other kids in the long term, learning to read and write and communicate, often meant not being like those kids in the short term – sitting high up so he could write, using letter stamps instead of crayons.

  Where Thomas should sit became a constant source of tension between Rappaport, who wanted Thomas to be close to the floor whenever possible, and Ellenson, who thought he belonged in his custom-made wheelchair until a better close-to-the-floor option could be found. Such friction is common between a parent and a principal when the parent becomes a constant, vocal presence in a school, but no less frustrating. “A parent has to be willing to let the school explore,’’ Rappaport said. “That’s why the parents partner with schools.’’

  The teachers navigated these clashes as best they could, tending to sit Thomas on the floor for circle time but in his chair for most other activities. Barr, for one, said that she believed that Thomas needed fewer choices and began to act on that belief. “It’s what I call my British-nanny persona,’’ she said. “It’s not, ‘Would you like to go to the park?’ It’s, ‘Off we go to the park!’’’ Slowly the approach worked. Thomas took what was offered and even started warming to his communication devices again.

  Barr began helping Thomas write stories on the classroom computer. Using special software and a track ball, he could click on the Mayer-Johnson symbols for “my’’ and “sister.’’ But the computer, while liberating, was also frustrating. By necessity, Barr limited what Thomas could write about, because she had to enter the available symbols in advance. And his use of the track ball was spotty, so the results were sometimes less than perfect.

  One November morning, Thomas, working one-on-one with Barr, had painstakingly entered “My sister Taite’’ on the computer screen. Asked to choose his next word, he clicked on “a lot.’’

  “What does she do a lot?’’ Barr asked, not at all sure if the word was purposeful or random.r />
  “Runs talks falls falls hugs,’’ Thomas typed by clicking the matching symbols. As each word appeared on the screen, the computerized voice spoke it aloud.

  Barr had certainly seen children write stories that made little sense, but she suspected that Thomas was actually trying to say something succinct. The whole exercise was like working a Ouija board – was she helping him write what he meant or what she thought he meant? “Um, let’s try that again,’’ she said. “What does Taite do a lot? Does she run a lot? Hug a lot?’’

  “Falls hugs falls talks runs,’’ Thomas wrote.

  “O.K.,’’ Barr said when it became clear that Thomas’s energy for this task was spent. “Let’s print this out and read it together.’’

  Children in kindergarten at M.S.C. turned their stories into “books’’ by adding “covers.’’ So a short while later Thomas was in his wheelchair with a piece of construction paper taped to his tray and the alphabet arrayed in front of him in the form of 26 small rubber stamps.

  “What’s the first sound of ‘By’?’’ Barr asked. “Buh. Do you see it?’’ Thomas’s hands moved everywhere but to the B. He put his face nose-distance from the tray, searching for the answer. As he did, his flailing hand landed in the inky stamp pad.

  Sensing his frustration, Barr handed him the letter B, and he pushed the stamp onto the paper. “Great job,’’ Barr said. “Now how about the next sound. ‘By-ayyyyye.’’’ Thomas glanced back over his shoulder. At first it looked like a random motion, but when he did it a second time, Barr followed his gaze. He was looking toward the basket of books that students had already finished. “Oh, you want to look at what you’ve already written – good strategy,’’ she said. She brought over a previous effort, done just as painstakingly on another day. Seeing that the letter he wanted was Y, he pointed right to it on his tray.

  The teacher’s smile was nearly as wide as the student’s. “Now, who’s this story by?’’ she asked. “Who wrote this story?’’ The boy’s hand went shakily, but deliberately, over to the T. Then the O. Then the M. Barr handed him each stamp, and he made a blurry impression. “BY TOM.’’