Good article about inclusion

iVillage Member
Registered: 10-21-2003
Good article about inclusion
5
Mon, 09-13-2004 - 8:30am
The article is long, and moving, in alot of ways (at least for me) and talks about inclusion and how it comes to be. The little boy in the article is alot like Alicia, they even share the same way of saying yes and no. Thought you all might be interested. Shelley



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

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.

http://www.nytimes.com/2004/09/12/magazine/12MAINSTREAMING.html?ex=1096028295&ei=1&en=2726b93643593ed9


---------------------------------

iVillage Member
Registered: 03-19-2003
Mon, 09-13-2004 - 12:22pm

Shelley, it's amazing at what parents and educators working together can accomplish!

 


 



iVillage Member
Registered: 10-21-2003
Mon, 09-13-2004 - 12:36pm
THings are pretty good. We had an "event" on Friday. And not a good event...ALicia was at school and she started to eat her recess (she starts a few minutes earlier than the rest so that she can be done and maybe have a chance to play), which was a wagon wheel. Something she's had to eat tons of times. Anyway apparently she turned white and her eyes rolled into the back of her head and her right hand was clenched. She was breathing shallowly and unresponsive. Other than the clenched fist she seemed relaxed, but not relaxed enough to pee her pants or slump over (which would be hard to do as she is strapped in)...it took her aide 3 mintues to get a response from her. Just when she came out of it and they were going to call me, the fire alarm went off and they had to go outside. There was no fire, and no one pulled the alarm (falsely) Thank goodness. But it took them a few mintues to find someone who had a cell phone onthem so they could call me. When I got there, she was totally fine, she had no memory of the episode and REALLY didn't want to come home; but I made her because I think her aide needed to gohome and have a stiff drink. They think she had a seizure.

Here's the thing...that does not resemble, in any way, her usual seizures, and she had no "post" seizure behaviours. Usually she's really tired, and pale and listless. Well not on Friday, her colour was good, she was raring to go. I didn't take her to teh Doctor, because all they would do is tell me to watch her and see if it happens again. They rarely like to do anything for ALicia the first time anything happens, especially if I haven't been the one to see it. Apparently they trust me to be calm and remember all the details. MRI's and EEG's are very hard to get on ALicia because she will not cooperate. I'll tell my DOctor on our regular visit in a couple of weeks.

Now I'm wondering if maybe there was a chemical in the air that set the fire alarm off, and maybe Alicia is extra sensitive to it...and passed out?! She was fine ALL weekend, totally herself....I'm at a lose.
iVillage Member
Registered: 03-19-2003
Tue, 09-14-2004 - 7:46am

Oh MY!

 


 



iVillage Member
Registered: 10-21-2003
Tue, 09-14-2004 - 11:05am
We're down to thinking that a piece of food got caught and blocked her airway for a minute. Ingredients of the wagon wheel are still the same. And she has no food allergies that we know of They still don't know why the alarm went off...but are leaning more to an electric current . Hope fully this won't happen again, and as of today she is still acting normal...so we go on. How are things with you and yours?
iVillage Member
Registered: 03-19-2003
Tue, 09-14-2004 - 1:48pm

It's crazy around here as usual!