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Bumps Abound When Students Become Their Own Advocates
Special Needs Can Make Transition to College Tricky

By Susan Kinzie
Washington Post Staff Writer
Saturday, October 25, 2008

After a decade of worrying about her son's attention-deficit disorder, meeting with teachers, calling around to get lost homework assignments and getting advice on SAT test accommodations, Lori Spinelli-Samara is facing this simple truth: Next year, in college, Nick is on his own.

The Olney mother knows he's plenty smart enough. But will her son, a senior at Our Lady of Good Counsel High School, get to the assignments due in three weeks without his parents, teachers and cross-country coach keeping tabs on him? Keep his focus during lectures? Lose afternoons playing Guitar Hero instead of studying?

"If you have ADD," she said, only half laughing, "how do you remember to take your medication?"

A generation of students accustomed to receiving help for special learning needs is entering college. The percentage of students identified with learning disabilities who graduate from high school and go on to four-year colleges jumped from one in 100 in 1987 to about one in nine last year. And those who go on to any kind of post-secondary education went from a third to almost three-quarters by 2003. But some are finding that the transition isn't easy.

Many students with learning disabilities such as dyslexia or memory troubles have had years of education shaped by intense parental support, involved teachers and legally mandated school safety nets. And many colleges, including American University and Montgomery College, have programs to assist students with the transition.

But what colleges must do is far less defined legally, and professors and administrators at some schools seem to remain skeptical about the needs that students might have. Schools must provide assistance to students, but only if the students disclose their disabilities.

Most students don't. Some are tired of being labeled. Some are unable to afford the extensive and recent cognitive testing that most colleges require as proof of disability. Some just don't get around to it until they start failing classes, at which point it's often too late to salvage the semester.

For the parents of learning-disabled students, the typical concerns about their sons and daughters going away to college are magnified. Those make-or-break exams, for example, are even scarier for students who have never done well on tests. All that unstructured time between classes is far more daunting for those who tend to lose track of things. People with attention-deficit hyperactivity disorder, which is a neurobehavioral disorder, often have trouble organizing tasks, finishing homework and paying attention.

The students who are most successful, experts say, are the ones who adapt quickly to independence from their parents and become their own advocates.

"It'll be interesting to see, the first semester, how this goes," Spinelli-Samara said -- whether Nick will seek out the learning centers or tutors or extra time he needs. "And we won't be with him."

* * *

Ever since Nick Samara's ADD was diagnosed when he was in second grade -- a year he remembers he spent watching the cars zoom by on the road outside his classroom window while his classmates did projects -- he, his family and his teachers have been working to make sure he doesn't fall behind.

His parents have pushed to get him accommodations such as extra time on exams, tried organizational tricks such as color-coding notebooks, sought out therapists, experimented with medications, sought advice from teachers. At times, it seemed to swallow up everything else, his mother said.

In recent years, federal protections, better screening and, critics say, some over-diagnosis have made learning disabilities and attention disorders common in mainstream classrooms. Schools have improved and expanded the help available. Federal law requires primary and secondary schools to identify students having trouble, design individual education plans, set goals and offer accommodations including quiet rooms for test-taking, additional time for homework and non-written evaluations.

In many cases, parents become fierce advocates, demanding services, meeting with teachers, threatening lawsuits, spending countless hours helping with homework and paying for private tutors.

Then, when they get to college, many students and parents are surprised to find out that they need recent tests -- ideally, from the junior or senior year -- to claim a disability.

Ann Deschamps, a transition resource teacher for Fairfax County public schools, helped create a series of lessons to ease the transition and try to increase the number of students who continue getting academic accommodations in college. "It's tough," she said. "Their parents have been driving the whole way, and now the students have to understand their own strengths and weaknesses, and what they need to be successful."

Still, only about one-third of college students with disabilities get accommodations from their schools. The others don't, usually because the schools don't know they need them, according to a national study for the U.S. Department of Education; only 40 percent tell school officials that they need help. Half of them don't consider themselves disabled.

American University has a small group of first-year students who, among other things, meet with an adviser weekly and take the introductory writing class with a professor who has specialized knowledge about teaching students with learning disabilities.

Other schools, including the University of Virginia, provide accommodations such as tutoring, peer note-takers, reduced course loads and high-tech software that reads books aloud, makes studying more interactive and engaging, or helps students organize scattered thoughts.

Since the 1970s, Montgomery College has had an intensive college access program that offers small classes, tutors, academic counseling and other help for students with learning disabilities.

But there are still colleges that parents say aren't eager to help. Selene Almazan, a lawyer with the Maryland Coalition for Inclusive Education, lost faith in her son's top-choice university, the Rochester Institute of Technology, when school officials told her he wouldn't be allowed to use a calculator. They seemed more skeptical than helpful, said Almazan, who lives in Silver Spring. Her son chose another college instead.

* * *

Nick Samara is taking tough classes, and he has a battery of standardized tests this year. He took the SAT with extra time this month, and he will have IB and AP exams before he graduates.

"It's frustrating," he said. He takes good notes, asks the teacher for extra help, studies hard and goes home at night and talks to his parents about everything he learned in his history class. "Then I confuse it with other dates and facts and names. I know I learned stuff. It just doesn't get down in a test."

College is going to be a lot tougher, he said. His grades will rely much more heavily on just a few exams and papers each term. He won't have the routines, rigid schedules and smaller classes of high school.

He and his parents are looking at colleges that put less weight on test scores for admissions. Nick wants a school with a Jesuit philosophy, and one that is small enough that professors will be able to tell, from his discussions during and outside of class, how well he has learned the material even if his test scores aren't great.

"It's been a very long, long journey," Spinelli-Samara said. "Just have faith that what you've done is enough, and they'll find their way."

Over the past couple of weeks, Samara has begun the intensive cognitive testing he will need to back up his request for accommodations such as extra time on exams in college. The tests focus on how his brain processes information, assessing language and memory. The testing process is a little weird, he said -- hours in a tiny room with a one-way mirror and a security camera, answering questions such as what a horse and a giraffe have in common. "But I know I have to get it done," he said. "I know it'll help in the long run."

This month, he and his parents visited John Carroll University near Cleveland. On a tour of another college this fall, he saw a history class with 25 or so students in it, a good size, he thought. When it ended, one stayed behind to get some extra help from the professor. "I thought, 'Oh, hey, that could definitely be me doing that, in less than a year,' " he said. "In a good way."

Staff writer Michael Alison Chandler contributed to this report.

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