Window Boy (26 page)
Justin Cronin is a brilliant writer but an even better human being. The House of Fiction has changed my life. Thank you to all my fellow writers: Lucie Smith, Shirley Redwine, Brenda Liebling-Goldberg, Angelique Jamail, Kahla Dunn, Gabrielle Hale, Mimi Swartz, Sarah Warburton, Kat Hunter, Georgina Nelson, Charles Alcorn, and Steve Gullion.
Rue Judd is the classiest publisher that I have ever met. She is a pro, and a wonderful person to work with. Lucy Chambers is diligent, skilled, and so talented as an editor. Sally Doherty has been a good friend to the book.
Thanks to Mina Gerall for the information about Pittsburgh and for believing in my books. To Paula Douglass for the amazing marketing campaign. To Bill White for encouraging me to write. To Allen Gee for his many thoughtful comments. To Bobbi Samuels, Donna Vallone, and Kathryn Kase for crying over several drafts. To Gene and Susan Vaughn and Dick and Diane Trabulsi, Dr. Mark Leifeste, Ellen Susman and Dr. Gail Gross for their interest and enthusiasm. Buddy Haas, Mayor Bob Lanier, Helen Chang, Eric Pulaski, Denton Cooley, Bud Frick, Jonathan Day, James T. White, Kitty Rabinow, Lynn Crowley, Becky and Doug Ferguson, Kathryn and Craig Smyser, Robin Morse, Rusty Hardin, Mike and Marcia Nichols, Shafik Rifaat and Steve Susman—it meant so much to me that you were so supportive of my first book. To Rich Kinder, I am waiting for your book about Churchill. Thank you to Sharon Haley, Hazel Mitchell, Louise Van Vleck, Pam Rosenauer, Bette John, Suzanne Crowley and Ann Todd for their support and encouragement. To Ben Stein, Charles Simmons, Ryan Friedman, Daniel Leebron, Katie Kellner, Alice Johnson, Alexander Bennett, Iris Cronin, Alexander Jefferson, Hannah Smati, Emily Lahourcade, Stephanie Mallard, Brittney Prause, Ford Hubbard, Salima and Shamsa Mangalji, Hannah Phils, and Francie Williams for reading my books. To Chas, Jackson and Lauren Jhin, and Will, Elena, and Stephen White for being the best teenage friends a children’s book author could have. To Gary and Andrea Lynn for befriending me and helping me with my DVD. To Dr. Larry Jefferson, Dr. Michelle Lyn and Cynthia Petrello for their technical help with cerebral palsy. To Nora Shire for fact-checking and obtaining all the permissions. Nora was endlessly patient with the many drafts. To my elementary school friends whose names I borrowed for this book. You know who you are. To Erin Kline and to Katie Moses for all their helpful research. To Judy Baldwin and Maribel Castro. One of the gifts of my life has been that I’ve gotten to meet librarians who are fellow readers and wonderful people. Thank you all for the gift of your time.
Not only have these great friends helped me, but I’ve also been inspired by Winston Churchill and Sam Davis. Since they never gave up, I decided not to.
VI. The Inspiration
The Lessons of Classroom 506
September 12, 2004
By Lisa Belkin
I. First Impressions
It was the first day of school last year, Sept. 8, 2003. The kinder-gartners were arriving in batches at Classroom 506 at the Manhattan School for Children, on 93rd Street between Amsterdam and Columbus Avenues. The parents of these 5-year-olds said they felt lucky to be taking their children to M.S.C. that morning, lucky to have won the scramble for admission to this sought-after institution – a public school with particular cachet among artistic, educated Upper West Side families who can’t or won’t pay for private education.
Only half the class was there that morning; the other students would come later in the day, the better to ease the transition to “bigkid school.’’ Taylor, an African-American girl, was coloring a picture. Evan, one of two blond-haired boys, was playing with blocks. Thomas, one of two motor-impaired, nonverbal children, was in a custom-built wheelchair, his blue eyes wide, his gentle face animated, watching from on high as the others drew and chattered and explored.
Richard Ellenson, Thomas’s father, was also there, surveying the room. It was Ellenson who devised this experiment, this attempt to reconfigure a classroom – and, in some sense, the system around it – so that his son, who has cerebral palsy, could find a way to fit into a world that often seems to resist him. Ellenson, a wiry man dressed all in black against a room awash in primary colors, was watchful, and what he was noticing was how much more work there was to be done.
“The way the space is set up, there are only four possible places to fit his wheelchair,” he said to his wife, Lora, who stood with him. The other children had 16 places to sit, he explained, sweeping his hand past four brand-new tables, each with four child-size chairs. He pointed to a threesome of students sitting at a table, not interacting but at eye level with one another, unlike his son. “They are in a moment when they can become friends,” he said. “Thomas is not.”
There were other parents watching too. They glanced first at Thomas, then at the little girl next to him, who, though seated in a standard chair, had very little head control and was slumped over her Play-Doh. They noticed that while the class list, posted by the cubbies, had barely a dozen names, a small army of teachers – including an occupational therapist, a speech therapist, an “augmentative communication” expert and several other aides – had greeted them at the door. Even those who were arriving as kindergarten parents for the first time could sense that this class was different.
“Inclusion,” said Suzanne Blank, the head teacher in Classroom
506. There was a small circle of parents around her, and everyone seemed to be smiling just a bit too broadly as she explained what was going on.
“Inclusion” is the latest in a series of evolving strategies for special-needs education. Though the definition of the word varies, inclusion, as used by educators, generally means making a child with a disability a full part of the class. Instead of merely placing that child in a standard classroom for part or even most of the day and expecting him to keep up (a strategy often known as “mainstreaming”), inclusion involves rearranging the class – both the physical space and the curriculum – to include him. Ideally, once an inclusive classroom is rethought and reconfigured, it will serve clusters of children with special needs, not just one, so that impaired and nonimpaired children can come to see one another as peers. Proponents of inclusion say that it is the best way to prepare all children for the real world; skeptics contend that it too often gives teachers responsibility for impaired students without giving them sufficient training and resources, resulting in children with special needs getting improper attention and children without special needs not getting enough attention – a poor-quality education for everyone in the class.
When Thomas Ellenson began kindergarten last fall, the New York City school system had more than 1,000 classes that met the definition of inclusion to some degree. But the impaired children in those classes struggled with more manageable problems like learning disabilities and speech impairments. Thomas fell at the serious end of the disability spectrum – he could not speak or walk or sit unassisted or feed himself. By that distinction alone, Thomas’s disabilities made his classroom a first. “There is nothing else like this in the city,’’ Linda Wernikoff, the deputy superintendent for special-education initiatives, who helped create the program, told me. “This is a step beyond for us.’’
To chronicle a year, as I did, in and around Classroom 506, was to observe the most ambitious step toward inclusion by the largest school system in the country. But the story of Classroom 506 is also something more. It is an extended look at just what it means to be the parent of a special-needs child in the United States right now – a time when it effectively falls to the most vocal and persistent parents to shape policy and practice. These parents attend workshops, then take what they have learned and educate their children’s teachers. They hire experts to write reports and document exactly what their children need. Many quit their jobs so they can have the time to choreograph their children’s care. Some go even further and change careers, turning their hard-won expertise into a full-time profession. And at least one set of parents, Thomas’s, have gone the distance – persuading the City of New York to design a classroom and a curriculum to their specifications.
If their experiment were to work, Richard Ellenson said at the outset, it would “provide a template for how to teach children like Thomas so we don’t have to recreate the wheel for every child who comes along.” And if it were to fail, he said, he and his wife would have no idea how to educate their son.
A mere four months earlier, Classroom 506 was not a possibility for Thomas. In May 2003, he was finishing preschool at a private program called Standing Tall, which served children with severe motor impairments but a wide range of cognitive abilities. The Ellensons, like the parents of preschoolers throughout the city, were determined to find the perfect elementary school for their child. To them, education was everything. Richard is a graduate of Cornell and a founder of the advertising company where he works. Lora, a physician and a scientist, runs a research lab at New York-Presbyterian Hospital. (By way of full disclosure: Richard’s mother was my kindergarten teacher, though Richard and I met only when I started to write about him.)
But the longer the Ellensons searched, they said, the more they came to believe that what they wanted for their son did not exist. Thomas did not belong in District 75, the city’s classification for programs serving students who are severely disabled, because, they reasoned, he might get lost in a system that included so many children who were cognitively as well as physically impaired. Thomas might be a better fit in a school designed just for children with an array of physical problems, but they feared that that experience would not prepare him to interact in the real world. And while they could mainstream him into a standard public- or private-school classroom, that would present the opposite problem: he would not interact with anyone else like him.
A solution to the Ellensons’ dilemma began to take shape one evening in May of last year when they were the hosts of an end-of-term thank-you dinner for the teachers and therapists who had helped Thomas through preschool. The group gathered at Zoe, a SoHo restaurant, and talked about there being no appropriate place they knew of for the boy to go next. At one point in the evening, all heads turned as Mayor Michael Bloomberg arrived for a dinner of his own. Richard, who has never been described as shy, excused himself and, moments later, returned with the mayor. Bloomberg promised the table that he would help and provided a telephone number. Within the month, Richard was meeting with Dennis Walcott, the deputy mayor for policy, and, with Wernikoff, sketching plans for a kindergarten class that would include three or four children like Thomas.
Such a classroom would not be cheap. The law requires that a district pay for needed services for special-education students wherever they are schooled; during his last year in private preschool, for instance, Thomas cost the city $40,000 in supplemental services. Therefore, many of the costs – for physical, occupational and speech therapy – would be accrued by the district whether it created this class or not. And the argument could even be made – and the Ellensons certainly made it – that the long-term cost would be lowered because so many children at one site would centralize the work of the therapists. That said, it would still be more expensive to educate the 18 children who would be in this class than it would the 25 students in the school’s largest kindergarten class. It would cost $35,000 more, Wernikoff said.
Because they were involved in the planning, the Ellensons knew exactly what awaited their child on the first day of school, while the other parents in the room were taken by surprise. There had been no announcement, no meeting, no letter home. Susan Rappaport, the crisp and polished principal of the Manhattan School for Children, had insisted on that. “We wouldn’t warn parents that there would be African-American children in the class or children who need glasses,’’ she told me before the program began. “If they believe their child should not be in this class, then I believe their child is not a good fit for this school.’’
No parent objected that first morning. They smiled. And they watched. Kate’s mother beamed when her daughter showed off a star she had drawn. Daniel’s parents gave him a hug after he put his toys away. Thomas’s parents grinned nervously when they met Thomas Parham – who immediately became known as Big Thomas – the muscular, impeccably dressed “para’’ (classroom-speak for paraprofessional) who would be their son’s aide every day of the school year.
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.
