by Andrea White
IV. Making Friends
One morning near the start of the school year, Blank took Ellenson aside when he brought Thomas to class. The other children were asking questions about Thomas, she told him, and they stared at the boy more often than they talked to him. Blank knew that Ellenson had spent a lot of time explaining his son to other children, and that he had volunteered to do the same for his son’s class, if necessary. She said she thought it might be necessary.
Ellenson agreed, but said he did not want to be the only parent to talk about his child. “If the message is that every child is an individual, then we have to talk about another child or we’re singling Thomas out,’’ he said. The following Friday, Ellenson arrived for morning circle time to “share’’ about Thomas, and another father, Stephen Lee Anderson, came to “share’’ about his son Evan.
At the center of the Ellensons’ dreams for Thomas is the hope that he will make friends. It is one of the few pieces they can envision with any clarity in the puzzle that will shape itself into his life. They think he is smart, but they understand that a parent’s lens can be cloudy on that subject, and they also know that it is hard to test a child who cannot speak. If he is smart, they are sustained by visions of Stephen Hawking, who has changed the world of physics despite being trapped in a body that is little more than a container for his brain.
And they think Thomas may have other gifts too. His favorite television channel is the Food Network. One of the handful of words he can physically speak with relative clarity is “Emeril,’’ the name of his favorite chef. He loves to help his parents in the kitchen. A chef can direct without doing, his father says, and a sophisticated palate is within the realm of the possible for Thomas. If he does harbor talent, then the Ellensons’ hopes are buoyed by their friend Dan Keplinger, known to the art world as King Gimp, the subject of an Academy Award-winning documentary about how he paints, using a paintbrush on a headstick, despite his cerebral palsy.
But even if Thomas’s future doesn’t hold such creative or intellectual promise, he will need friends. He lights up when other children are around. He craves interaction, thrives among other people. Equipping him for this part of his life was one reason – as important as teaching him to read and write – that his parents fought for this class. They know that socialization gets only harder as disabled children get older.
Starting down that road was Richard Ellenson’s goal when he stood at the front of the class, alongside Thomas, on the second Friday of school. I was not there that morning, but Ellenson, Anderson, Barr and Blank were all moved by the visit and described it to me in the same way.
“We want to talk about something that’s very important in our family,’’ Ellenson began. “Thomas has cerebral palsy. Does anyone know what that is?’’
The children shook their heads.
“Thomas’s brain got hurt when he was born,’’ Ellenson continued. “Because of that, Tom can’t actually speak, and he has to be in a wheelchair. But other than that, he understands everything we say. Right, Tom?’’
Thomas smiled and looked up toward the ceiling.
“Thomas speaks in his own way,’’ Ellenson went on. “Isn’t that right, Tom?’’
Again the boy raised his eyes.
“When Thomas wants to say yes, he looks up,’’ Ellenson explained. “Does everybody else want to try that?’’
The children looked up. Then Thomas and his father taught them how to say no – by putting their heads down.
“Everything we’re doing, he’s doing,’’ Ellenson said. “It’s just that he does it all inside his head.’’ He paused. “Any questions?’’
Connor raised his hand. “Can Thomas swim?’’ he asked.
Ellenson said he could, then showed the children how. He lifted the boy out of his chair, and Thomas put his arms around his father’s shoulders. Then Ellenson got on his knees and walked around, the way he and Thomas do in the shallow end of a pool.
The children giggled. Connor raised his hand again. “What color bathing suit does he wear?” he asked. “Does he wear water wings? I wear water wings.” Soon afterward, Anderson talked about how he and Evan do puzzles together on Sunday mornings. That, Ellenson told me, was when he thought, It’s going to be O.K.
And in many ways, it was O.K. A few days after the fathers came to share, Thomas’s classmate Taylor broke the ice. She wanted to sit next to Thomas in circle time and push his wheelchair to the table at lunch. “If I ever need a wheelchair, I want one just like Thomas’s,’’ she told the class, and soon everyone wanted to try out his chair and be pushed around the room.
Evan also developed protective feelings toward Thomas, and within a few weeks he was giving voice to what Thomas wanted to say. The others recognized the depth of their friendship. One day, Ellenson watched as his son tried to make himself understood to another classmate, a little boy who was never completely comfortable around Thomas. “Evan will be here in a minute,’’ the boy said. “Evan always knows what Thomas wants.’’
Richard and Lora tried to help by making new friends of their own. The more they could include Thomas’s classmates’ parents in his world, they argued, the better life would be for Thomas. The surprise expressed by the other parents on the first day of school had turned into varying degrees of warmth. Some, particularly Evan’s parents and Taylor’s, developed real affection for Thomas and brought their children over to play at his house. Others never really got to know the boy but made their peace with this experiment when they realized that the small size of the class meant that their own children got more attention from the teachers than they would in a regular classroom.
Each time he visited Classroom 506, Ellenson scanned the class for social moments for Thomas. When he couldn’t find any, he created some. One day, he arrived at the playground during recess and saw Thomas sitting alone in his chair while the other children ran and played. So Ellenson became the Pied Piper and created an obstacle course, with Thomas stationed as one of the hands to be high-fived as each runner reached the finish line. His message seemed to have taken. A few days later, Thomas could be found beneath the slide, next to the play steering wheel. He was the bus driver. Big Thomas took out a MetroCard, and the other children took turns getting on the bus and telling their driver where they wanted to go.
Birthday parties, too, looked different to the Ellensons. “The minute we walk into a party,’’ Lora said, “we’re thinking, How can we make Thomas part of this world?’’
When Kate had a soccer party at the Chelsea Piers sports-and-entertainment complex, Richard tried to hint to the athletic 20-something in charge that maybe Thomas could be “official score-keeper.’’ But the suggestion was ignored, and Thomas sat on the sidelines, his father crouched alongside. When a ball came their way, Ellenson scooped it up and placed it in Thomas’s lap, then helped roll it down his legs and onto the field. “I’m not sure it kills him,’’ Ellenson said of his son, “but it really kills me.’’
A week later, at a party for Taylor, the bowling alley supplied an adaptive device for wheelchairs: an orange metal contraption that looked like a walker but with a ramp attached, sloping down from the top of the device to the floor. Thomas could push the ball down the ramp and watch it roll toward the pins. Evan, who was Thomas’s teammate, thought this was a nifty way to bowl, and soon he was using the apparatus too. By the end of the party, children all over the bowling alley, even those who happened to be there for other birthdays, were pushing their bowling balls down the slide.
V. Frustrations and Breakthroughs
By early spring, Ellenson was frustrated. On the one hand, he was grateful to Rappaport, and Wernikoff, and the mayor, and to everyone else who had made the program possible. On the other hand, nothing was as fast or as complete or as ambitious as he knew it could be. Lora, who worked in the incremental world of science, accepted that progress was often slow. But Richard was in advertising, and to him, if something was slow, it wasn’t progress.
“Where I come from, you have a deadline, and you stay up all night, and you meet it,’’ he told me on one of his frustrated days. “I thought everyone would be working nights and weekends on this.’’
He was grateful for the Blue Sky Room, which was designed and equipped in just a few weeks. But he was disappointed that it was used as much for an ordinary therapy room as for whimsical activities for the entire class. “Have yoga every day,’’ he said. “From a marketing point of view, that would make parents choose this over Dalton.’’
He liked that Thomas’s teachers had started preserving tidbits of each day’s class into a digital recorder so that when Thomas came home he could answer the question “What did you do at school today?’’ But Richard was also frustrated that so many good ideas that had been used before, by other parents in other schools, hadn’t been widely shared. He learned at a conference that another family had thought of using a recorder in the same way for their child a year earlier: how many more days of conversation could he have had with Thomas had he known?
Ellenson was still baffled that an effective low-to-the-ground seating option could not be found for Thomas. And he said that he felt similarly stymied that while Goossens, the augmentative-communication expert, was hired to devise an array of opportunities so Thomas could communicate – like programming a Tech/Talk with vocabulary versatile enough to discuss everything from cookies and milk to the relative merits of building Lego airplanes and trucks – much of her time was being spent adapting books. He worried that Thomas’s own “voice’’ was rarely being heard.
What seemed to trouble Ellenson most of all was that, as he saw it, others didn’t share his urgency to create a reproducible template for future classes. To his mind, the entire effort was wasted if it did not result in a program that was a model not only for schools in the district but also for others throughout the country. “At the end of all this,’’ he said, “we should have a packet we can hand to the next team and say: ‘This is what works; this is what doesn’t. You don’t have to start from scratch.’’’
The teachers and administrators were not so sure. “Children are too different,’’ a therapist told him during one of many conversations that bordered on arguments. “You can’t write a recipe book for a classroom.’’
“If you had to build a new bridge every time you reached the East River,’’ Ellenson replied, “no one would ever get to Brooklyn.’’
Lora gently prodded her husband to focus on the progress amid the obstacles, and when he looked, it was certainly there to see. Thomas was thriving, Richard knew, and it was because of steps he and his wife had taken. Several months into the year, for instance, Richard had introduced the M.S.C. team to Pati King-DeBaun, an expert in teaching reading and writing to nonverbal children. Her energy was infectious, and Ellenson wanted her aboard, but Wernikoff worried that it might take months for her to be paid through city channels. So Ellenson paid her consulting fee himself, hoping that he would be reimbursed eventually. In all, he laid out about $15,000 last year filling what he saw as gaps in the program. He did this not only for Thomas, he said, but also because he felt a responsibility to the other students enrolled in the program he started. “Had Lora and I not been willing to spend the money,’’ he said, “then I would be asking six other children to come along with Thomas on a ride to nowhere.’’
King-DeBaun flew in from her home in Utah about once a month. During her visits, she held workshops on specific issues of literacy training but imparted more sweeping lessons as well, like how to view learning through Thomas’s eyes. “She changed everything,’’ Barr said. “I had a lot of tools. She taught me how to use them.’’
One of King-DeBaun’s insights was that children typically learn to write before they really learn to read. And one way they learn to write is by speaking. They feel sounds in their mouths, trying them out, rolling them around, and then they come to picture those sounds as letters and words. Children who cannot speak must be helped to hear their own voices in their heads, she said, because that voice, though silent to onlookers, was definitely there. This lesson proved to be the key to more than just teaching Thomas to read. It transformed the way Thomas was seen, not only by his teachers, but also by his parents.
This change did not occur in a single moment, but in tiny increments over many months. It was most evident in the sign-in books the children used every morning. The books were the idea of King-DeBaun, who said that each child should start the day by expressing himself in whatever way he chose. There was no right or wrong way to fill the day’s page in the individual books, and while the other children drew pictures or wrote stories, Thomas used stamps at first, then started asking for a crayon. Slowly his scattered scrawls became loose interpretations of letters. By spring he was determined to write his name.
To his parents, Thomas’s sign-in book was a window onto his inner life. “He’s thinking what the other kids are thinking – he just doesn’t have a way to express it,’’ King-DeBaun assured them, and while they hoped that was true, it was not always easy to believe. One day, for instance, Thomas was in his bedroom, and his father pointed to the bookcase and asked how many books were on the shelf. “Eleven,’’ Thomas answered, correctly and without hesitation, by pointing to the numbers on his tray. Richard found himself thinking, Does he really know that, or was that just luck? A short time later, Richard asked, “How many children are in your class?’’ Again, without hesitation, Thomas answered, “Seventeen.’’ Again Richard wondered if that was an accident.
“Of course a 6-year-old can count to 17,’’ he said later. “But every age-appropriate accomplishment that Thomas has comes as a surprise. That’s a shame.’’
If Richard could not see the whole of Thomas, how could his teachers be expected to? Following King-DeBaun’s lead, Ellenson prodded Thomas one evening. The boy had just pointed to the symbols for “Thomas,’’ “Natalie,’’ “wash.’’ Ellenson understood that he wanted Natalie, his home health aide, to give him a bath.
“When you point to ‘Tom,’ ‘Natalie’ and ‘wash,’’’ Ellenson asked, “what do you hear in your head?’’ Ellenson held out one palm toward his son as he said, “Does your head hear ‘Tom. Natalie. Wash’?’’ Then Ellenson held out the other palm. “Or does your head hear something like, ‘I want Natalie to give me a bath’?’’ Thomas pointed toward the second palm.
Ellenson tried again. “When you said, ‘Taylor ball pink’ this afternoon, did you hear: ‘Taylor. Ball. Pink’? Or something like, ‘I want Taylor to bring me the pink ball’?’’ Again Thomas chose the full sentence.
Over and over, Ellenson asked, and over and over his son gave the same answer. In his head, he was letting his father know, he spoke just as fully and completely as anyone else did.
VI. ‘Do You Know About Valente?’
Across the hall from Thomas, in Classroom 503, Valente McCrady was falling behind. The year before, when she was in kindergarten for the first time, “she was a sponge,’’ her father said, “learning her letters and solidifying her colors.’’ Her goal for this repeat year, she had told her teachers, was to learn numbers. But as winter turned to spring, she seemed to be losing ground.
Her parents were in the unique position of seeing firsthand how MotorVation changed the way the same child was taught in the same grade, and they knew that Valente was stalled not for want of effort from her teachers. During her first year in kindergarten, her father said, the staff always seemed to be “playing catch up – preparing a lesson and then scrambling at the last minute to adapt it for Valente.’’ During the second year, by contrast, he saw them “beginning to plan the activity itself around Valente.’’
Her lethargy was not a result of unhappiness, either. She loved being with other children, particularly “typical’’ children, her father said, and that was why the McCradys had placed her in the Manhattan School in the first place. The reason she was failing was physical. Her seizures were coming more often, leaving her limp
and exhausted. Her motor skills declined. “At the start of the year she was a demon with technology,’’ Goossens said. But as the months went by “we were picking up her arm, putting her hand on the button and saying, ‘C’mon, honey, can you just press it?’’’
Her doctors tried new medications. Her parents consented to brain surgery. Then, in February, just before the operation was scheduled, the McCradys heard about a diet designed to bathe the brain in fat. For every gram of carbohydrate or protein Valente ate, she would eat four times as much fat. Her food was slathered in butter, margarine, olive oil, mayonnaise and heavy cream.
Her teachers and paras learned a lot about fats and proteins. They knew that a small misstep could throw the girl into seizures. “We weren’t worried about them messing up because they were as scared as we were,’’ McCrady said.
For several weeks she became bubbly and attentive. She had a growth spurt. She began learning. As quickly as the improvement started, however, some worrisome signs reappeared. Valente started having seizures again. One morning she suffered four of them before 11 o’clock. “That poor little body, how much can it take?’’ Rappaport wondered.
The answer was not much more. On Thursday, April 22, Valente died at home, in her sleep.
Rappaport learned of Valente’s death the next morning and called the kindergarten and first-grade teachers in, a few at a time, to tell them. “That little girl was a very, very important part of the foundation of this school,’’ she told me. “Last year we had nothing to offer her but love and support, and that grew into what you see now.’’
Soon afterward, Rappaport went from one classroom to the next to be there as the teachers broke the news to their students. As she walked toward Classroom 506, she found Chan Mohammed, Thomas’s baby-sitter, frantically pushing Thomas out the door, so he would not hear about what happened. Mohammed called Ellenson to ask if Thomas should stay to listen. “Yes, absolutely, bring him back in there,’’ Ellenson said, though he later confessed that he was not certain it was the right answer.
