Brave New World
Middle school is hard enough. Imagine what it's like for a child with Down syndrome. Sixth grader Chris Vogelberger found out last year.
It's a tough place for any 6th grader to be on a sticky fall day: last-period science class. Brains are already booting up imaginary PlayStations when the teacher's voice cuts through. "Give me an example of something that decelerates," he commands. A single hand shoots up, belonging to a child with a speech disorder. Still, his answer is clear and correct: "A boat."
In many ways, Chris Vogelberger is an average 13-year-old—an angelic-featured, blue-eyed blond who dislikes schoolwork and would rather be set free with a Blockbuster video card and a pizza than just about anything else in the world. But Chris has Down syndrome. And on this day, he has met his IEP goal for the week: to learn to listen.
For a student like Chris, who is doing 1st grade- level work and requires a full-time aide, just attending regular classes at Shiloh Middle School is a victory. Though almost 100 of its 780 students have individualized education plans—the cornerstone of schooling for students with disabilities—Shiloh, a 6th through 8th grade school in rural Carroll County, Md., had not encountered a student in its regular track needing such extensive assistance before Chris enrolled.
When he was first included in a regular classroom, in 3rd grade, it took him a year to adjust. Last fall, he faced a new set of challenges as he moved from elementary to middle school. He had to switch classrooms and teachers—six times a day—and make a whole new set of friends. Education Week was allowed to follow his progress throughout the year for this story.
Chris' situation is becoming more common. More than a quarter-century after the passage of what is now called the Individuals with Disabilities Education Act, most children with special needs are taught in classes alongside their peers without disabilities. In the 1998-99 school year, about 96 percent of U.S. school-age children with disabilities were in regular classrooms for at least some of their school day. And of that same group, almost half spent more than 80 percent of their school day in a regular classroom.
Chris ended up at Shiloh because his parents had bought property nearby and were planning to build a house there. Peter and Cindy Vogelberger liked the 2-year-old school's disability-friendly engineering. The one-level building, for instance, had classrooms grouped for each grade and rooms with sinks and partitions to allow for multiple uses. What's more, school administrators had sought permission from the district to allow Chris to attend, even though the Vogelbergers did not yet live within the school's attendance boundaries.
Several years earlier, the Vogelbergers—who have three other children, ages 9 to 16—lobbied to put Chris in a regular classroom after meeting two middle school students with Down syndrome. One was in a regular classroom, the other in a special education school.
"I knew that the included boy had Down syndrome, but I couldn't tell by looking at him. He really fit in," says Cindy Vogelberger. "The other one I saw and right away I knew—he just had the DS look. ... It hit me like a two-by-four that this was not what I wanted for Chris," she says. A family-support coordinator for a Carroll County school program for infants and toddlers with special needs, Ms. Vogelberger uses her hard-won experience with Chris to help other families.
She tells of a day when Chris, an otherwise energetic prankster, came home from school drooling. He had picked up the behavior from another student in his 2nd grade special education class. His mother has no doubt that the influence of that environment triggered the conduct.
In a single year of attending regular classes, Chris gained two years in spoken-language skills.
"That's why inclusion is so important," explains Ms. Vogelberger. "He will not be living in a special education world. He'll be living in our world."
The world for Chris at Shiloh includes the vital presence of the full-time assistant he nicknamed "Bean." Debbie Bieling, who began working with Chris three years ago, is coach, counselor, teacher's assistant, tutor, and best friend. All day long, she guides him from class to class, keeping him motivated and focused, and decoding his often hard-to-understand speech.
"Bean, no uhside ow."
"It's cold," she'll explain. "He doesn't want to go outside for PE."
Also helping Chris through his day is Brandi Moran, the school's tireless 6th grade special education resource teacher, who makes most of the needed curriculum modifications, loading the lessons onto his iMac laptop—a tool provided by the district that he can take home on weekends for assignments.
Between Moran and Bieling, the bulk of Chris' special needs are met. The setup allows his classroom teachers to concentrate on the rest of the class, and break away only briefly to help get him started on a modified lesson.
While other students in his science class were learning the periodic table of elements and the properties of metals and nonmetals, for example, Moran gave Chris the task of learning the parts of an atom. The accompanying test she created consisted of a diagram of an atom with arrows pointing to various sections that he was asked to label with words from a provided list.
Moran says she spends more time working in support of Chris than any other student, mostly because of the major curricular revisions he requires. "I'm used to modifying curriculum down a grade or two," she says, "but down to the 2nd grade and even the kindergarten level I had never done before Chris."
Joanne Ashwell, the school's integrated- language-arts specialist, had no materials that Chris could use and had to buy a new set of books. "We call it inclusion, but honestly," she says, "he's not doing what the other kids are doing."
Ashwell pulls out a large ring of flashcards, each bearing a pre-K- to 1st grade-level word, such as "many" and "jump." Because he has difficulty connecting letters with their sounds, Chris has had the same set of flashcards since elementary school.
At a Sylvan Learning Center, where the Vogelbergers have been paying to send Chris twice a week since November, instructor Noel Morsberger uses a succession of word games to reinforce Chris' vocabulary. Although Chris can't read the word "coin," a flashcard with a drawing of a shiny penny will trigger his memory.
Retention is another problem. The solution? Repetition, repetition, repetition.
When Chris first came to Shiloh, he could spell his first name and the first three letters of his last. He spent a good part of the year memorizing his phone number, address, and other personal information. Every time he boots up his laptop, he must type in those vital statistics, which he now knows by heart.
Although he is making painstaking progress, at least one of his instructors believes that, academically, Chris has reached his peak. Moran, the special education resource teacher, is concerned about what will happen as he gets older and the gap between him and his classmates widens.
Cyndi Dukes, his homeroom teacher, worries about his ability to become independent if he doesn't have life-skills preparation worked into his education plan. She points to a program at the school called Living for Independence. She believes Chris could gain from some of the experiences the program exposes children to, such as going to the supermarket and sorting clothes for a nonprofit agency.
"Is it that important that he know what an atom is? Or is it better for him to read emergency signs, a skill that would assist him as an adult?" asks another teacher.
But Cindy Vogelberger believes that life skills will evolve naturally from her son's home life. Each of her four children, for example, is assigned a night to cook dinner with Mom; Chris' day is Monday. He loves showing visitors how he can make microwave chicken nuggets, from the freezer to the table, by himself.
"He's going to have 50 years to work in a career. Why teach him how to use a timecard when he's 13? He'll be missing gym and social studies classes," his mother says. She wonders why so often independent-living classes gear students for work at places like McDonald's, a tendency she thinks limits their choices.
And while she's aware that Chris can't comprehend all the academics, she's more concerned that he learn socialization skills.
Rampant tag games ensue after lunch most days and have become a seriously competitive sport in Chris' circle of friends. Classmate Dan O'Connell gives Chris the distinction of being the fastest kid in 6th grade.
"I've had a better year with him here," says O'Connell. "I started out the school year thinking that everyone would be perfect in a sense, the way that they would talk and act. But then I found out that people can really be different. You learn how to deal better with everyone."
When report cards were handed out the last day of school, Chris methodically opened the envelope: mostly A's and B's. Now, there was 7th grade to anticipate.
For a short while, though, there was a question of where that might be. Chris' parents had decided to separate several months earlier and were selling the property in Shiloh's attendance area, leaving them unsure if Chris would be allowed to remain at the school. After a series of meetings with his IEP team, school officials decided that Chris could stay.
Though it has been a tough year, his friends, teachers, and other school staff members all believe that Chris has become more independent, sociable, and confident.
"He's not timid anymore. He wouldn't leave Debbie's side at first. Now, he walks down the hall by himself," says science teacher Todd Dickensheets. "And he gets upset with himself if he doesn't have his homework."
Says Principal Thomas Hill: "He's actually had to be reprimanded for being mischievous, just like any 6th grader."
"Sometimes, I wonder if what we're doing is worth it," acknowledges Cindy Vogelberger, "but I think it's a start on the right path. ... At least we're making some changes and he's growing."
One day near the end of the year when his mother asked him to turn off his reading light and go to bed, Chris responded in a way that would irritate most parents. As she tells it: "'Mom,' he said, 'I have two words for you: shut and up.' I should have been angry at him. But it really caught me by surprise, and I had to laugh. "The reality is you pick up the normal middle school stuff in this environment. And it's OK."
Vol. 21, Issue 42, Pages 46-55Published in Print: July 10, 2002, as Brave New World