A Dream Not Denied
By LESLIE KAUFMAN
AT 6:30 a.m.
Katie Apostolides rises,
showers and pulls and tugs at her long brown hair under the dryer until it is a
shiny, luxuriant mane. She applies a little eye makeup and arrives on the
She calls “Hello” and “How are you?” to all the students she passes — whether or not she knows them — and then gets a large Green Mountain coffee and listens to Latin rap on her iPod.
Forty-five minutes before class begins, she is in Nina Mazloff’s office to pepper her with questions. She wants to know what they will cover for the day, whether she will have to take notes and if there will be any homework.
Professor Mazloff is patient but gently encourages her student not to spend the whole time waiting with her. “Katie really is a devoted student,” she explains kindly.
Ms. Apostolides, 23, likes to say of herself, “I am just a normal girl with a lifelong story.” But that is really just another way of explaining that she has Down syndrome, a genetic abnormality that has many side effects, including mental retardation that can range from severe to mild.
determined quest to have a normal college experience, she is at the forefront
of a wave of cognitively challenged students who are demanding, and gaining, a
place on campuses nationwide. Ms. Apostolides was
accepted at Becker, a small liberal arts school with campuses in Leicester and
Of course, regular admissions at Becker is fairly gentle — almost 78 percent of applicants are accepted, and the average SAT score is 880, combined math and reading. Still, Ms. Apostolides had to produce a high school transcript and take the SAT (she doesn’t remember her score).
She attends regular classes and lives in a coed dorm. She has her own room but shares common spaces with a diverse representation of the student body, including many members of the football team.
While she is among a small number of students with Down syndrome to have such a completely integrated education, there are dozens of others in programs that place cognitively disabled students in regular classrooms and sometimes in dormitories. The Web site ThinkCollege.net, a database on postsecondary schooling financed by the United States Department of Education, has information on 106 programs. “And the number is growing fast,” says Nancy Hurley, an education specialist at the Institute for Community Inclusion, which collects information for the database.
The opening of college campuses comes as an outgrowth of the Individuals With Disabilities Education Act of 1975. That law mandated that public schools educate children of all intellectual abilities and, whenever possible, in regular classrooms with same-age peers.
Now, coming of age expecting full inclusion from kindergarten through 12th grade, students and their parents are asking to graduate to similar opportunities. By law, children with disabilities are entitled to a free public education until age 21. Until recently, that mostly meant an extended stay in special-education classrooms at a public high school, but recent clarifications of the law have allowed states to use money earmarked for lower education for appropriate postsecondary programs instead.
By now, colleges have had experience accommodating students with learning disabilities like dyslexia and attention deficit disorder. But teaching students with cognitive delays or mental retardation is the next frontier. These new students are far more challenging: colleges must struggle not just with how students learn but with the limits on what they can absorb.
have intellectual disabilities, but their chronological age goes along
normally, and they want the same kind of social experiences,” says Linda Hickson, who coordinates programs on mental retardation and
autism at Teachers College at
Parents and educators pressing for inclusion say they are committed out of practical concerns as well. People with cognitive disabilities have abysmal rates of participation in the workplace, and when they do get jobs, they tend to hold entry-level positions, like fast-food clerk and custodial aide. But studies commissioned by the National Down Syndrome Society have shown that the quality and quantity of jobs increase with postsecondary education.
As parents and advocates intensify efforts to get more access to mainstream colleges and to federal financing for these endeavors, the questions take on new public relevance: just what are Down syndrome children capable of learning? what does their presence suggest about the role of higher education? is the college experience really the best way to enhance their lives — especially when their education can cost $10,000 a semester?
Postsecondary programs for the cognitively disabled vary substantially; some are more inclusive than others, some lead to a certificate or associate’s degree, others don’t. Community colleges offer vocational training in fields as diverse as child care, physical therapy, funeral services and hospitality services.
“Even though there are more than 100 programs, all of them developed separately,” says Madeleine Will, vice president for public policy for the National Down Syndrome Society. “There has not been any overall coherent plan or nature to the programs. Many of them are lacking what we consider to be vital pieces. An awful lot of them, for example, do not have a residential component.”
hopes that will soon change. Last year Laura Riggio
and her husband, Steve, chief executive of Barnes & Noble, gave a grant of
$300,000 through the Down syndrome society to enable two public colleges in
The programs were designed to address four basic needs: employment training, socialization, independent-living skills and academic growth — through a mix of remedial reading and writing courses, exposure to creative experiences like drawing and acting and, eventually, more challenging coursework.
“We are trying to assess what works and what doesn’t,” Ms. Will says. “Ultimately, it will be a model that we can describe in more definitive ways and seek to replicate. Ideally, we would like a statewide system of programs like this.”
The grant was
split by the
At Mercer, participants in what it calls the Dream program are assigned student mentors. They take most of their classes with the general student body and can work toward an associate degree or certificate in any of the college’s 66 fields.
First, however, they must pass so-called foundation courses in math, reading and writing.
Although Mercer has open admissions for the general population, it requires applications for Dream so potential students can be screened for “ability to benefit and commitment,” says Susan Onaitis, who administers the program and teaches the life and college skills class. For the first semester, this fall, Dream accepted nine students, one of them, John McCormack, with Down syndrome.
At student orientation in August, Mr. McCormack, a gregarious 24-year-old, got a hint of the struggle ahead. Even among his cognitively disabled peers, he was the last to finish a scavenger hunt meant to familiarize the students with the campus. At the college art gallery, where he was supposed to describe a painting, he needed help spelling “orange” on the form he was filling out. At the library, where he was discovering how to make a photocopy, he became confused by a sign on the change machine and thought it cost $1 instead of 10 cents. At the cafeteria, he was suddenly shy waiting in line to order a cheeseburger and asked for help. “I am afraid they won’t understand me,” he explained.
get-to-know-you session with just the Dream group went much better. He hugged a
girl he knew from high school and participated well in a game in which he was
asked to describe what he had learned about the likes and dislikes of his
mentor. In discussions between exercises, he told the other students about a
Asked why he is attending college, Mr. Mc- Cormack says it is because his sister “went there.” He hopes to get a good job when he gets out. His ambition is to be a singer.
“He always wanted to go to college, and this new program was the perfect opportunity to get the support he needed,” says his mother, Susan McCormack. She doesn’t think her goals for his education are unachievable. “My hope is that he will get a little out of an education and make some contacts,” she says, “maybe get a job, make friends and have new experiences.”
McCormack is not trying to earn a degree, he is not eligible for tuition
Classes have been tough, she acknowledges. There is a lot of reading to be done. So far he has been assigned a short story by Langston Hughes, “Thank You M’am,” and “The Stolen Party,” by the Argentine writer Liliana Heker. Mr. McCormack does not read the material himself. His mother reads to him and asks him questions. “It is amazing how much he is able to give back,” she says, “but he would never be able to read it on his own.”
Cohen, director of the Down Syndrome Center of Western Pennsylvania at
“The bind that we are in is that we want to support families’ hopefulness about what their children want to achieve,” he says. “But at the same time we are aware that there are likely to be limits.”
Dr. Cohen cites research showing that children with I.Q.’s of 60 to 70 can read at fourth-grade level, sometimes higher; those with I.Q.’s below that can read at first-grade level. Math levels tend to be lower than reading, and writing correlates with reading but is also affected by fine motor skills. During early childhood, emotional and social development lags as well, but Down syndrome children eventually develop strong social skills and are perceptive about their relations with others.
IN many ways, Katie Apostolides is not just a pioneer but also an avatar of all the potential and limits of students with Down syndrome. For starters, she was given extraordinary preparation for educational success by particularly driven parents.
Her mother, Paulette, was reading books on how to raise a gifted child while pregnant. Katie’s disability came as shock. Paulette Apostolides was in her 20’s, and there was no history of Down syndrome in the family.
But she decided quickly that she would not accept the limits of cognitive development that doctors were preparing her for. She started her daughter on a rigorous course of therapy at the age of three weeks, after consulting one of the country’s foremost experts in Down syndrome, Siegfried M. Pueschel. She cut back her work as a marketing consultant. Two sons without Down syndrome, now 19 and 9, followed. Still, she devoted much of her time to managing her daughter’s education and therapy. “I just didn’t have friends,” she explains.
Katie had language therapy from the time she could make sounds until she was 18 and has been in inclusion classes since kindergarten. Her mother says her I.Q. is on the high side for a Down syndrome child.
“I broke all the rules on how to raise the special child,” Paulette Apostolides says. “We executed therapy goals every minute of the day. When she was in the bathtub, I would read her The Wall Street Journal. I couldn’t let her just sit there. There was never a moment she wasn’t stimulated.”
In many ways, Katie Apostolides’s achievements are amazing. She tried out for and made the high school cheerleading squad. Last semester at Becker she received two B’s and an A without significant accommodation from the college. She receives largetype syllabuses, a note-taker for each class and extra time for exams, but she must still master the same material as her classmates. Madeleine Entel, the administrator of Becker’s Centers for Academic Success, says, “This was no giveaway. Katie worked really hard.”
Perhaps more astonishing, in classrooms Ms. Apostolides barely stands out. In a recent evening class on effective communications, she sits in the front row with a note-taker. During the three-hour class she does not participate, but she nods vigorously when the instructor discusses how to avoid bias in business communication and starts talking about the disabled.
Afterward, Ms. Apostolides explains that she does not like to ask a question in class unless she has prepared ahead or knows the subject well — for example, how a person with a disability might like to be addressed. But the next day, in Professor Mazloff’s class, she is very verbal. The students sit in groups of four. Ms. Apostolides is next to a dorm-mate she describes as a break-dancer and friend, who whispers to her occasionally during the class. For an exercise in recalling their most vivid memories of childhood teachers, Ms. Apostolides has as many contributions as anyone.
Yet for all her accomplishments, her academic experience is limited. Her classes are introductory, even in her third year. There is no Shakespeare and no philosophy and nothing that involves math, which Ms. Apostolides has particular difficulty comprehending. She spends hours each week with a private tutor struggling to understand material that other students might find rote. The lack of advanced work means that, even though she has 36 credits at Becker, she will never graduate.
She has had to retreat from her original ambition, being a physical therapist, because she could not memorize medical terms.
Ms. Apostolides describes what she is learning in her “Principles of Education” class: “It has given me insight on observing children and on how we do assessments of children. When you are observing you are interacting, but you are basically recording stuff in a notebook. It is a really neat way to understand children.” When asked to describe her best learning experience at college, she cites a computer class. “I learned how to use Microsoft Word, PowerPoint and the Internet. I got all A’s.”
And for all her effervescence, it is routine social interaction that most frustrates and confuses. With an understanding that has clearly been informed by numerous talks with her mother, she says she sometimes “can hang on too much and too quickly.” Her tendency to misjudge a situation is all too evident. Traveling by campus shuttle bus, Ms. Apostolides makes all the students getting off give her a high five. They do it, but obviously without relish. She doesn’t sense that she may have imposed.
One counselor, who asked not to be named because the comments might be perceived as insensitive, has a tragic view of Ms. Apostolides’s time at Becker. “Katie thinks she has a million friends, but she is going to leave here and not one student is going to stay in touch,” she says. “I can’t help thinking if she was with other Down syndrome children, it would be better.”
Paulette Apostolides calls that idea — that someone with Down syndrome cannot have true friends among the nondisabled — a prejudice that will be overcome in time. When her daughter is home, she says, her cellphone rings frequently — friends wanting to stay in touch.
Ken Cameron , dean of students at Becker, has been helping Ms. Apostolides navigate the social byways. “Some of the social boundaries just aren’t there for her,” he says. “But she has improved tremendously since she’s been here. She is aware of not pushing too hard to be someone’s friend or not. During her first year I’d see her every day, and she’d say, ‘This is happening and this is happening.’ Now she is much more independent. The staff hears from her a lot less. You can sense that she has matured.”
In Mr. Cameron’s estimation, that is one of the main purposes of a college education anyway.
Kaufman is a Metro reporter for The