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|Mon, 09-13-2004 - 8:30am|
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 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
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
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
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
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
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.
Thomas grinned in victory. Richard tightened his jaw in
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
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
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
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
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
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.
Barr said when it became clear that Thomas's energy for
this task was spent. ''Let's print this out and read it
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
''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
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
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.
Thomas smiled and looked up toward the ceiling.
speaks in his own way,'' Ellenson went on. ''Isn't that
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
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
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
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
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
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
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
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
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
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
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.