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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.
Amy Dockser Marcus, Wall Street Journal, December 31,
2005
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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.
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.
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.
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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