New York Times Magazine
September 12, 2004
The Lessons of Classroom 506
By LISA BELKIN
I. First Impressions
It was the first day of school last year, Sept. 8, 2003. The kindergartners
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 ''big-kid 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 wheelchair 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 90's, 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.
''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 wheel-chair 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.''
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 scorekeeper.'' 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.
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.
Lisa Belkin, a contributing writer for the magazine, last wrote about
attention-deficit disorder in adults.
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