WSJ: Down syndrome: mainstream or separate ed

December 31, 2005

Eli's Choice
His parents fought for boy with Down syndrome to be in the mainstream.
As a teenager, he just wanted to be with his friends.

By AMY DOCKSER MARCUS
Staff Reporter of THE WALL STREET JOURNAL

December 31, 2005; Page A1

BETHESDA, Md. -- For years, Eli Lewis was the only student in his class
with Down syndrome.

The genetic condition, which causes a range of cognitive and physical
impairments, made it harder for him to do his school work. But his
parents felt strongly that he could succeed. They hired a reading
tutor. An aide worked with his teachers to modify tests and lessons so
that he could be in the same classroom as everyone else. He
participated in his middle school's award-winning chorus and was
treated as a valued member.

But when all the other kids in his class were making plans to go to the
local high school this fall, Eli, 14 years old, said he didn't want to
go. He wanted to be in a small class with other students like him. "I
don't want to get lost in a big crowd," Eli says.


Kids in the Hall: Eli Lewis, flanked by his buddies, Chris
Hamilton-Bruen (left) and Jamie Verhoff (right).

Eli's declaration surprised his parents. Then his mother recalled the
many times she stopped by the school to check on her son, only to find
him eating by himself. Once, when she came to pick him up from a dinner
that chorus members attended, she says she found Eli sitting with his
aide, while the other students sat at a different table.

"The kids liked him, they knew him, they spoke to him," says his
mother, Mary Ann Dawedeit. "They just didn't think of him as a peer."
Eli, she says, was tired of "being the only kid who was different."

Federal law mandated in the 1970s that children with disabilities be
offered a "free and appropriate public education" in the "least
restrictive environment," rather than being separated only in special
schools or institutions. Over the years, advocacy and additional laws
resulted in efforts to get children with disabilities placed in regular
classrooms, with proper support, whenever possible. The process, called
"inclusion" or "mainstreaming," has largely been an academic success.

Studies have shown benefits for all children, not only those with
disabilities, who study together. Many researchers argue this is one
reason why people with Down syndrome have made such remarkable progress
in recent decades. People with Down syndrome who learn in regular
classrooms do much better academically, research has found. They also
have significantly higher rates of employment after they graduate and
earn more money than peers who studied mainly in self-contained
classes.

And yet, Eli Lewis's experience poses a difficult dilemma, one that is
only now starting to be recognized and addressed. With help, he had
succeeded academically in a regular classroom. But he felt isolated. In
a book to be published next year, researchers at the Center for Social
Development and Education at the University of Massachusetts in Boston
say that although people with intellectual disabilities made enormous
gains academically due to inclusion, their social integration at school
"remains stagnant."

In a survey of 5,600 seventh- and eighth-grade students from 70 schools
across the country, more than half of the youths said they were willing
to interact with students with intellectual disabilities at school. But
only one-third said they would be willing to invite such students to
their house or go to the movies with them, according to the survey done
by the University of Massachusetts center and the Washington-based
opinion firm, ORC Macro. "Student attitudes continue to remain the most
formidable barrier to inclusion," the researchers concluded.

At first, Ms. Dawedeit and her husband, Howard Lewis, thought Eli might
change his mind. The couple -- who have two other sons who don't have
Down syndrome -- felt there were many advantages to Eli staying in a
regular classroom, including greater independence and more interaction
with the general student body. But eventually, Mr. Lewis says he began
to recognize that having Eli in a regular classroom might not be "as
important to Eli as it is to me."

Ms. Dawedeit remained reluctant. She talked with a friend who had a son
with Down syndrome, who was also learning in a regular classroom. "I
felt like I had let her down," Ms. Dawedeit says. "I had preached a
mantra for so long to so many."

In May, at the science exposition at Eli's middle school, her feelings
changed. The eighth-graders took over the school hallway and parents
were invited to visit. Some students demonstrated elaborate experiments
they had been working on. Eli worked with his aide to do research
online about the chemical properties of silver. He learned where to
find it on the periodic table. For the exposition, he printed out some
of the documents he had found.

When his mother came to see his project, Eli again raised the subject
of where he was going to high school. For Ms. Dawedeit, the contrast
was sharp. Here was Eli, successfully participating in a science
exposition with peers who didn't have disabilities -- but still talking
about wanting to be with other people with Down syndrome.

She says she realized she needed to try to accommodate her son's desire
for a social group. "I really had to step back from my personal
beliefs," she says.

In the fall, Eli enrolled in the ninth grade at Bethesda's Walter
Johnson High School, a sprawling building of over 2,000 students. He is
in a special program with 20 other students who have disabilities,
including one who gets around in a wheelchair and has difficulty
talking. Six of the students in the class have Down syndrome. Eli
already knew some of the kids from various extracurricular activities,
such as drama class and Special Olympics, where he participated in
soccer, basketball, swimming and bowling.


Eli with his family: father, Howard Lewis, mother, Mary Ann Dawedeit,
and brothers, Eric Lewis, 17, and Ezra Lewis, 12, at their home in
Chevy Chase, Md.

Getting out of the mainstream has meant trade-offs. His school is about
10 miles from Eli's house, farther than the local high school that his
older brother attends. (The local high school doesn't have a separate
special-education program.) A special-education bus now comes each day
to pick up Eli, along with other students with disabilities.

"This was one of our big compromises," says his mother. In middle
school, Eli walked to a bus stop and rode a regular school bus. "Other
kids knew him," says Ms. Dawedeit. "Now he's a special-ed kid on a
bus."

One evening in November, after a dinner of chicken burritos and salad,
Eli helped his brothers, ages 12 and 17, clear the dishes. Then his
parents watched him, as he started making his way through his homework
-- a worksheet to practice using nouns and verbs. Since Eli was born,
they had fought to have him included in regular classrooms. Now it
sometimes felt as if Eli might end up outside the world they had tried
so hard to keep him in.

All along, they shared a similar goal: for their son to be able to live
independently. But Mr. Lewis, a lawyer, began to worry that the
academic gap between Eli and other classmates was getting wider in the
regular classroom as he grew older, and might be too difficult to
bridge in high school. "I'm not married to inclusion at the expense of
Eli's getting the skills he needs," he says.

Ms. Dawedeit, a manager at a retail store, was less certain. She knew
how much Eli, like all kids his age, wanted to belong. But without
spending significant amounts of time in regular classrooms, how would
he ever learn the skills he needed to reach the goal of living on his
own? "The truth is he has to go out and get a job," she says. "If he's
educated with his regular peers, then maybe a regular peer will hire
him."

Eli finished his English worksheet, and got up to take a break. He came
over and gave his father a hug. "Are you meeting any new kids at
school, Eli?" his dad asked. "Not just yet, Dad," Eli answered. "Why
are you hanging out only with the kids in your class?" his father
queried. "Because I know them," Eli answered, and went into the kitchen
to get some cookies.

At his new school, the Parent Teacher Student Association has put the
issue of how to promote the inclusion of students with disabilities in
extra-curricular activities on the agenda for its January meeting. A
student group that pairs students with disabilities with a buddy
without disabilities has already scheduled several activities for the
coming months, including ice skating and bowling.

Still, for most of his school day, Eli is now in a separate classroom
from the general school population. Last month, ninth-graders in the
general-education classes were reading the novel, "To Kill a
Mockingbird." In the special-education classroom, the teacher was going
over worksheets that had been adapted from the book, with some related
questions.

Eli was signed up for a regular physical-education class, but asked his
parents if he could switch to one with only special-education students.
His mother was reluctant to change, because it was one of his only
chances to meet kids in the general-student population. She offered a
compromise: He could switch to the special-education gym class with his
friends, if next semester he took weight-training as part of the
regular class. Eli agreed.

Janan Slough, the assistant principal who oversees the
special-education department at Eli's school, says the school has
difficulty finding certified special-education teachers because of a
national shortage.

The school tries to foster as many opportunities as possible for those
with disabilities to be in general classrooms, she says. Still, she
adds, "I feel caught" between juggling the need for socializing with
the need to teach basic, crucial tasks, such as handling money. On one
field trip, the special-education kids went to a grocery store; they
were supposed buy something their family might use at home, pay for it,
and make sure they got correct change.

Most of the kids with disabilities need to focus on independent-living
and job skills, rather than college preparation. "I'm charged with
thinking about where they are going to be at 21," she says. "I don't
want parents to come back and say, 'It's nice they were socially
included and had parallel instruction, but you didn't prepare them for
the world of work.' "

For now, Eli has only one class -- ceramics -- that he attends with the
general school population. On a recent morning, Eli sat next to a boy
assigned to help him. The students were designing tiles, and from time
to time his peer assistant would look at what he was doing, or go with
him to get more clay. For much of the class, the boy bantered with one
of his friends, who had pulled up a chair next to him and was regaling
him with a story. From time to time, Eli made a joke and the boys all
laughed together.


Eli with his friends and fellow freshmen Chris Hamilton-Bruen, 14, and
identical twins Will and Jamie Verhoff, 15.

But when they walked Eli back to the special-education classroom, there
was no suggestion that they meet up again that day. When Eli was asked
if he enjoyed spending time with his assigned partner, he shrugged and
said, "It's OK."

Eli has a lot of ideas about what he wants to do after high school. In
middle school, he took a media class and worked in the school's TV
studio. Along with the other kids in the class, he was given a homework
assignment to make a public-service announcement. Eli made one about
the Special Olympics. "I want to be a director," he said, when asked
about his plans after high school.

"Eli has serious career aspirations for himself that may not have
anything to do with what the rest of the world sees for him after high
school," said his mother, one afternoon last month, while waiting for
him at a drama class he takes outside of school. The class, made up of
students with and without disabilities, was planning a variety show,
and Eli was excited about performing. Every night, he went to his room
to work on a dance routine he had created to accompany a song from the
soundtrack of the movie, "Holes."

His girlfriend, whom he met in elementary school and also has Down
syndrome, had invited him to be her date to the upcoming Winter Ball at
her private school. Next month, Eli will turn 15 and is planning a big
party. The only kids he plans to invite also have disabilities, his
mother says.

While she's glad he has found a social circle, she still wonders about
what he's missing by going to special-education classes instead of
staying in regular classes. "I go back and forth on it all the time,"
she says. For instance, his school has a state-of-the-art TV studio
with editing facilities and a control room, where a class is given.
Eli's parents wanted him to be in that class, but it's not possible
right now, because he needs to attend the special-education math class,
which is held during the same period.

On a recent morning at school, Eli weaved around the teenagers lining
the hallway. Some sprawled on the floor, catching up on homework.
Others joked with each other by their lockers, or rushed to get to
their next class. Eli didn't talk to any of the students. He walked
with purpose, heading to the special-education room.

When he got there, his face brightened when he saw one of his friends.
"This is my best friend," he said, throwing his arm around the other
boy, who also has Down syndrome. He pressed his face close to his
friend's until their cheeks almost touched. Eli smiled. "What table are
you sitting at lunch today?" he said as they walked together down the
hall. "Come on, make sure you sit with me."


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We had a similar situation in our school. My oldest son had a Downs kid
in his class in our very small public school (160 kids) every year from
Junior Kindergarten to 6th Grade. The boy lives on our street, and
would now be the age for Grade 9 (first year of high school). He is not
very high functioning, and there were behavioural and coordination
issues - he had a full time aide with him at school in the classroom at
all times.

I understand the mother's desire for mainstreaming, and certainly in
the early years of primary school, it was reasonably effective - he
interacted in and outside of the classroom with the other kids as a
peer, got invited to playdates and parties, and worked on similar
schoolwork. However, by even 4th grade, it was very much less
successful. My son was very protective of him and liked him, and the
children were all kind to him, but neither my son or other other boys
played with him at all beyond the early grades - he couldn't
participate in most of the things the boys were interested in and
talked about. Even many routine birthday parties involved activities
that were beyond the kid. And in the classroom, the work that the child
was doing became ever more distant than what the kids in the class were
doing. I mean, he was there all day, but I'm not sure that was doing
him any favours - I'm sure he couldn't help but feel excluded, although
as I said, the kids never laughed at him or deliberately left him out -
they sort of left him behind (i.e. its like when a pack of 10 year old
boys leave behind someone's 4 year old brother who wants to keep up but
just can't). I also wonder if it would have been better to have him
working on his academics like reading in a smaller forum.

I dunno, maybe it would have been different for a higher functioning
child. He's in a special program now. I think he would have gotten
eaten alive socially in our senior public school (Grades 7 and 8 - an
enormous school run like a high school), never mind the actual high
school.

M.

One of my daughters had a Downs kid in her elementary class in Geneva.
He must have been "high functioning"; anyway he was fluent in French
and Italian, and could converse somewhat in English. His parents paid
for a full-time aide in the private school.

As you say, it depends on the capacity of the kid.

wrote in message
oups.com...
One of my daughters had a Downs kid in her elementary class in Geneva.
He must have been "high functioning"; anyway he was fluent in French
and Italian, and could converse somewhat in English. His parents paid
for a full-time aide in the private school.

As you say, it depends on the capacity of the kid.

There are some kids who have Down syndrome and graduate college.

Jeff