Speak and Be Heard

Special-education students are learning that their own best advocates may be themselves.

Because of the attitudes in her school district, Lowe says she's having second thoughts about trying to form a group like L.E.A.D. "I feel really conflicted, because it's a great program... but if our students self-advocate and have little or no positive response, it could be really self-defeating," she says. "At Cheyenne Mountain High School, those kids have people who support them, including the principal, so if they have a problem in class, they have a place to go back to, but we don't have that here."

Parents in Colorado's Eagle County School District, which includes Vail, Minturn and Edwards, are also struggling to establish a group like L.E.A.D.

"The stumbling block we've had is finding the kind of individual to run this program who really understands the disability sector," says Mindy DeLia, who has four children with dyslexia. She sits on the school and district accountability committees in Edwards, as well as on the Colorado State Special Education Advisory Committee. Although she doesn't have dyslexia, she also represents Eagle County in the Rocky Mountain branch of the International Dyslexia Association.

Michael Hogue
Mary Anne Fleury teaches kids how to speak up; her son, Matt, has several learning disabilities.
Mark A. Manger
Mary Anne Fleury teaches kids how to speak up; her son, Matt, has several learning disabilities.

"There is really a need for a group like this up here," she adds. "Our ski-resort area has grown in leaps and bounds over the last few years, and 10 or 11 percent of our school district is made up of special-education students. We have about 4,600 kids in the district, which means that we have more than 400 kids with additional needs. That's like having a whole other school made up of just special-needs kids. Until last year, we didn't even have a full-time special-education coordinator. The board approved one as of this last year. Prior to that, we had one person handling both special education and English as a Second Language."

The need for a group like L.E.A.D. became clearer when DeLia and other accountability-committee members had a discussion with principals about a peer counseling program in which students who are doing well academically and socially serve as counselors to those who are struggling. But the committee members discovered that kids with learning disabilities weren't getting anything out of the program.

"Principals told us that these kids can't talk about their disability with a kid who doesn't understand disabilities," DeLia says. "To be in the L.E.A.D. group, you have to have a disability, so they're able to help one another."

DeLia wants to see L.E.A.D. replicated, not so much for her own kids, but for those who don't have as much support at home. "I'm the only one in my family without dyslexia, so there's a running joke that I'm the one who doesn't fit in and that I have to advocate for myself," says DeLia, whose husband is also dyslexic. "Self-advocacy has always been natural in our home, and it translates right into school. My middle-schooler comes to his IEP meetings, and in class, he talks to his teachers about what he's struggling with. It really helps if a kid knows it's okay to say, 'Hey, Teach, this isn't working for me; I need something else.' I think it goes a long way when teachers hear those things directly from students. And it has a great impact on kids' self-esteem when they understand themselves better, because when they feel good about themselves, they do better in school."

Another Eagle County parent, who asked to remain anonymous, is frustrated that no one from the school district has created a group for kids with learning disabilities, so she and other parents are considering forming a group of their own. But she says that to provide kids with the type of educational and emotional support that L.E.A.D. does would require someone qualified in special education. "There are no support systems here for kids with learning disabilities," she says. "My son isn't even aware of any other kids who have dyslexia. No one is educated about it in the school."

L.E.A.D.'s Lambros understands that a group like his can work only if teachers and administrators are open to hearing from and working with students who need extra accommodations. "To start a group like L.E.A.D., it takes someone who's really into it, and it's important to have a counselor and a special-education teacher working together, because you need to give kids both good technical information and emotional support," he says, adding that his group wouldn't be so successful if it weren't for the supportive staff at his school.

His observation is shared by other educators who have experimented with self-advocacy. The University of North Carolina at Charlotte recently released a three-year study of six schools across the country, including Cheyenne Mountain High, where self-advocacy programs have had varying degrees of success. "Inadequate administrative support, whether past or current, may have been the most common barrier across all of the sites," the study found.

Researchers at the university also discovered that self-advocacy doesn't work in cases where kids have "reached a stage of learned helplessness after years of academic failure." In addition, the study showed that students run into roadblocks when parents and educators cling to old roles. "For example, some professionals were described as having difficulty with the idea of allowing a student to run his or her own IEP meeting. The persistence of old roles created a state of environmental non-responsiveness to students who may have been tentatively trying to act in a more self-determined manner, only to find that they were discouraged from making those changes."

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