Window Boy (29 page)

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.

Soon the children were gathered on the rug with their teachers. Thomas was on one side of the group, Danielle on the other. Both were high in their wheelchairs, Rappaport noticed, when they should have been down on the floor, but she didn’t say anything about it. The other adults were standing behind the children, separated from them by a bookcase. That message was wrong, too, Rappaport noted later, but she didn’t say anything about that, either.

Blank, the head teacher in Classroom 506, sat on a low chair at the front of the group. “Valente was sick,’’ she said, explaining in simple language what a seizure disorder was and that Valente had died. “Some of you are going to feel different kinds of feelings,’’ she continued. “Whatever you are feeling is O.K.’’

Taylor crawled into Blank’s lap and began to cry.

Rappaport patrolled her building all day, burdened by new knowledge. “This is one thing I had never thought of,’’ she said. “That you bring in this new group and medically they are much more fragile. I thought about this program in terms of the mechanics: where do you seat the child, how do you toilet the child, how do you feed them? But I never thought about losing them.’’

That night, when they were alone at bedtime, Lora talked to Thomas. “Do you know about Valente?’’ Thomas looked up to say yes. “Where is she?’’ Thomas looked way up, past yes, toward heaven, a concept he learned a year earlier, back when Richard lost both parents within three weeks.

“‘Valente had a sickness called seizures, and you don’t,’’ Lora said. “Are you scared?’’ she asked. Thomas said yes.

VII. Making Plans

Each year, the kindergarten teachers at the Manhattan School for Children choose a theme and build the curriculum around it. When Thomas was in kindergarten, the theme was bread. From late fall through early summer the students read stories about baking it, did math lessons about buying it, visited a local bakery on a field trip and even performed an adaptation of “The Little Red Hen,’’ who bakes a loaf herself when none of her fellow farm animals will help. Thomas played a duck. His Tech/Talk was programmed to say “Quack, quack, quack.’’

At the end of the school year, all four kindergarten classes at M.S.C., those with children in wheelchairs and those without, created a bakery of their own. For two weeks beforehand, they baked – banana bread, pumpkin bread, chocolate-chip cookies, chocolate cake, cupcakes, cinnamon rolls – then stored their goods in a freezer. They drew a big sign that said “Madison Square Bakery’’ and smaller ones that priced the items at multiples of 10 cents each. They spent arts-and-crafts time making placemats and baker’s hats and vases with paper flowers.

As the “customers’’ – the parents – arrived, Thomas was positioned right at the classroom door, near the muffins. His love-hate relationship with his Tech/Talk was pure love that day, and he grinned at anyone close enough to hear him. If you were just out of range, he gestured wildly until you came near.

“Can I help you?’’ he said. “We made that fresh. It costs 10 cents. Thanks for coming.’’ Barr, his special-ed teacher, had programmed the device, and it was two of his classmates whose voices actually spoke the words, but from the expression of joy on his face, the words seemed to come from deep inside Thomas.

By the time the Ellensons arrived, there was already a crowd. “Can I help you?’’ Thomas asked them. Richard began to cry.

The end of the year was the usual blur. Richard Ellenson was elected president of M.S.C.’s parents association. Thomas, who was eager to get to his sign-in book every morning, could now write his name legibly and boldly in crayon. He also gained new mastery of the computer. One of his last projects was an alphabet book filled with animals, and he made it clear that he wanted to sound out the spellings of the words, just like the other children, rather than choose words from a prefabricated list. “Q IS FOR QUJAXL’’ he typed under a photograph of a quail. “R IS FOR RA!EBBIT.’’ “S IS FOR SKUFNK.’’ Barr was gleeful. “That’s the way a kindergartener should be writing,’’ she said.

At an end-of-year meeting, Ellenson and the M.S.C. staff members found themselves talking about the same things they were talking about at the beginning of the year. But now they spoke like veterans, not first-timers. Ellenson expressed his frustration that there still was nothing tangible – no booklet, no instructions – to hand down to others who might want to start a similar program. Wernikoff offered more support – more money, more staff development – for the coming year and told Ellenson that the school district would in fact reimburse him for the $15,000 he spent from his own pocket. Rappaport said she was determined to find a low-to-the-ground chair that would facilitate Thomas’s use of his hands.

For the coming school year, they agreed, there would again be two MotorVation classes in kindergarten, each with four disabled students. Rappaport knew she could fill those eight slots, because word was out and parents were inquiring. In the first grade, Thomas’s grade, there would be only one MotorVation class, taught by Barr and Blank. It would include the motor-impaired children who attended the first year, along with 14 nonimpaired children. All summer the parents of Thomas’s kindergarten classmates waited to learn which of their children would be allowed to move up with him into what was now considered a very desirable class. Thomas Ellenson will start first grade tomorrow morning, in Classroom 406, down on the first-grade floor. He is excited because his best friend, Evan, will be there too.

Notes

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