In preschool, he constantly vied for his teacher's attention by trying to hold her hand. In kindergarten, he bit the principal. In first grade, he was so out of control that his teacher wouldn't let him go to computer, music or art classes. When Chris was in second grade, his mother, Karen, a speech therapist, finally figured out what was behind his erratic behavior at a conference on attention deficit hyperactivity disorder.
When she heard a presentation about the symptoms of ADHD, she says, it was like listening to a description of Chris. Excessive climbing, for example, is typical of kids with the disorder. "I was like, 'Oh, my God, this is my son,'" Karen recalls. People used to tell her that kids like Chris were "just boys" and that there was nothing abnormal about their behavior. "Well, they're not just boys. They're extra loud and aggressive, and Chris didn't have many friends because of it."
So Karen put her son on Ritalin, and for a while, it helped. But his progress on the medication was cyclical: He'd have a good year in school and then a bad one. Thinking that perhaps he had something in addition to the ADHD, Karen eventually took him off the prescription drug. While she tried to figure out what else was troubling him, Chris continued to have problems. Almost every day during middle school, he was given detention for not doing his homework.
He and his mother both knew he was bright enough to understand the material; he just couldn't stay focused long enough to complete it. He did well on tests, but because he wasn't completing his homework, he got failing grades.
In eighth grade, an understanding math teacher told Chris that if he could pass the exams, he didn't need to turn in his homework. "That worked great, but none of his other teachers would allow him to do that. They wanted him to learn how to do all of the steps," says Karen.
"The thought of sitting down and doing my homework is really hard," adds Chris, who is now sixteen and a high school sophomore. "It's like, hey, there's my computer; hey, there's TV. I get easily distracted."
As he talks, Chris's eyes dart around the common area at Littleton's Arapahoe High School. He is supposed to go to band practice, but he doesn't want to. He thinks his teachers hate him, even though his mom tells him that isn't true. Still, most of them have never understood his learning disability, he insists, or tried to help him. Back in sixth grade, a teacher once told him she didn't believe in ADHD. "She didn't think it existed," he says.
Although ADHD is a more common diagnosis now than it was then, Chris and his mother continue to battle misconceptions about the disorder. While some teachers give Chris extra time to complete his homework, most don't. Even though special treatment is precisely what special-education laws were designed to provide, Karen says accommodations frequently aren't made. "A lot of his teachers think his disability is just an excuse," she explains. "The big thing they say to him is, 'You chose not to do your homework.' But it's not a choice with an ADHD kid. For some reason, ADHD kids just can't get their homework started."
Chris does much better during summer school, when eighteen weeks of work are squeezed into six. He says he gets bored, particularly in math, when the pace doesn't move quickly enough for him: If he doesn't immediately move on to something new, he loses interest and focus. So this year, he and his mom asked to have a year's worth of math lessons condensed into one semester; they suggested that he take math as an independent study so that he could stay focused.
They asked to have that written into Chris's Individualized Education Plan (IEP), a federally mandated document for special-education students that spells out their academic goals and details what they need to do to achieve them. (This is the first year Chris has had an IEP; in the past, he had what's called a 504, a plan that protects special-ed students from discrimination by listing the accommodations they need.) But the team of special-education counselors and teachers working on his plan wouldn't allow it. "They didn't want to give me special treatment," Chris says.
Karen has been speaking up for Chris, trying to get teachers and administrators to make arrangements for him since he was little. When his eighth-grade teachers wanted to hold him back a year, she argued against that. When his high school counselors suggested that he might do better at an alternative school, she rejected that idea, too. "I didn't want him to be in a school with a bunch of other ADHD kids," she says.
Lately, however, Karen has been trying to step back and let Chris fight some of his own battles. Just a couple of weeks ago, for instance, he took the initiative to get out of a supervised study hall for special-ed students, because he didn't want to take it on the day it was offered. Although it was a small issue, Chris felt good about asking and was pleasantly surprised when the teacher honored his request for a meeting to discuss it. But since Chris's grades haven't improved, the teacher told him he still needed to attend the class.
Chris looks the part of the bad kid: His hair is dyed an unnatural-looking shade of red; he wears spikes around his neck, which he confesses aren't allowed in school; and with his red plaid pants, black leather jacket and blue backpack inscribed with the word "fuck," he'd seem more at home at the Mercury Cafe than at the Chipotle he frequents across from his suburban high school. He may even act the part sometimes. He's had a couple of minor brushes with the law, the details of which Karen doesn't wish to see in print, and he admits to having experimented with drugs.
But Chris isn't a bad kid. He's just a teenager who's struggling to do better in school. And like a lot of students his age, he's starting to learn that his best advocate may be himself. In fact, speaking up in his own behalf was written into his IEP at the beginning of the school year.
But writing a goal down on paper and achieving it are two different things. Chris has one teacher who, he says, believes kids should never question authority. When he tries to speak up about a particular need in that class, the teacher writes him a referral for talking back. "Sometimes I'll be like, 'I had band late last night,' or 'I didn't understand the assignment,' and I'll ask if I can turn it in later, but she tells me she won't treat me different than the other kids."
That teacher may have to get used to students speaking up. "Self-advocacy" has become the new buzzword in special education as many parents and teachers have recognized the importance of encouraging kids to become active participants in their own education. But as Chris has discovered, self-advocacy is a long way from being the solution to the problems that have always plagued special-education students. Talk to almost any parent whose child has a learning disability, and she'll say she isn't satisfied with the services her school is providing. Ask any teacher, and he'll say he's doing the best he can given how underfunded and short-staffed special education is in the public school system.
Kids who are trying to advocate for themselves often face the same obstacles as their parents: skepticism about the legitimacy of certain learning disabilities, and the belief some educators hold that they're the experts when it comes to determining kids' needs. Even parents themselves sometimes prevent their children from having any meaningful involvement in their education because they feel the need to protect them.
But in cases in which parents are willing to relinquish some control and teachers realize that the people who know what's best for kids may be kids themselves, self-advocacy is proving to be an essential part of the social and academic lives of special-needs students.
Stan Lambros knows what it's like to go through school with a learning disability. He also knows what it's like to feel stupid because you can't understand what comes so easily to other kids. Lambros has a learning disability that makes simple math problems difficult.
"Intellectually, I was able to keep up, but mechanically, I couldn't," Lambros says of his school days. "A lot of kids can keep up intellectually but can't read or write."
As an adult, Lambros became a counselor at Cheyenne Mountain High School in Colorado Springs. He decided that he wanted to give his students something he never had: a way to educate themselves about their learning disabilities. "As a counselor, I ran support groups for divorce and other issues," he says, "so I thought, why not pull together a group for kids with learning disabilities?"
Seven years ago, he formed Learning and Education About Disabilities (L.E.A.D.), the first group of its kind in the country. Enrollment in the class has grown from seven kids to 25. The course is offered as an elective at the school, and L.E.A.D. has become a national model in the new self-advocacy movement. Twice a week, students meet to discuss the technical aspects of learning disabilities. They find out exactly what dyslexia or ADHD is, for example; they learn about special-education laws and their rights under them; they're taught the difference between a 504 plan and an IEP, as well as how to speak up during the meetings in which those plans are discussed; and they're told what IQ scores mean. When one of the students' 504 or IEP meetings nears, the group reviews the student's file and provides tips on how to handle it.
"A lot of kids don't know these terms and laws, because their parents have always been in control," Lambros says. "If a parent runs a 504 meeting, it usually takes 45 minutes to an hour, but if a kid does it, it lasts twelve minutes, because they can come in and say what their needs are and negotiate with the teacher. As a teacher, you're more apt to deal with a fifteen-year-old kid than an angry parent.
"We sort of do these parent-ectomies," he continues. "At some point, these kids have to say, 'This is my life, and this is what I need.' I try not to impose my own opinions on the group, but I know that when I became successful, my mom couldn't do anything more for me, because I had surpassed her."
In addition to learning about their own disabilities, L.E.A.D. members mentor younger special-ed students at middle and elementary schools one day a week, teaching them that it's okay to learn differently. They discuss learning problems only if the younger kids wish to bring up the issue; otherwise, they serve as a big brother or sister who helps with homework and plays games.
Perhaps the most important task L.E.A.D. students perform came about accidentally. During the group's first year, Lambros called Sheila Buckley, president of the Learning Disabilities Association of Colorado, and asked if she could recommend a successful adult with a learning disability to speak to the kids. Instead, Buckley suggested that his group speak to the LDA at the organization's next meeting.
"We didn't arrive with a presentation; we just came to answer questions. We came home totally jazzed, because we realized that we knew so much, but at the same time, we didn't know so much," Lambros says. "From those questions...our group started to grow, because we were so excited about learning more about learning disabilities. People started calling me and asking if I'd bring the kids to talk to them again. Since then, we've done hundreds of presentations."
The students speak to school boards, to students, to professionals and to parents about the social, academic and emotional problems that come with having a learning disability. A few years ago they spoke to their own teachers, and last year they went into some of Cheyenne Mountain's English classes. In another presentation before a group of family-law attorneys and judges in Colorado Springs, the students explained how divorce affects kids with ADHD.
The students developed a video about what they do and have distributed it to people in other states; they've also given presentations at the LDA's international conventions in Washington, D.C., New York and Denver.
But people who've been inspired by L.E.A.D. are discovering that replicating the group isn't easy.
Claudia Lowe lives in Eldorado Hills, California, a town forty miles east of Sacramento; her son Adam has ADHD and bipolar disorder. Lowe heard about Lambros and L.E.A.D. from someone at the LDA California chapter, and when the organization held its annual meeting in Denver in February, she decided to attend because the L.E.A.D. students were planning to give a presentation. After the convention, she spent a day shadowing some of the kids in Colorado Springs as they mentored younger students.
"I was so impressed with them that I went back to our school superintendent and said that I wanted to bring them out here to do a presentation," Lowe says.
The superintendent told her that the L.E.A.D. students could speak only during an upcoming staff development day; later, he told her they couldn't come at all because the teachers were going to be receiving training in another subject that day. "He didn't provide an alternative," Lowe notes. "There are 364 other days in the year." She believes it was just an excuse and says teachers and administrators in the school district have always been antagonistic toward special-education students and their parents. For instance, during an IEP meeting for Adam, his science teacher told her he wasn't convinced that Adam had a neurological disorder. Adam wanted to take his exams orally and be pre-tested to determine his weaknesses in the subject before the new science unit was introduced. "[The teacher] refused to make the accommodations," Lowe says.
She and her son didn't fare any better with his French teacher, who insisted on teaching a certain way; she told them that if Adam couldn't learn the way she teaches, too bad. Lowe realized that her frustration was shared by many others, and two years ago, she formed a group for parents of children with ADHD and other learning disabilities. Lowe says she naively approached the principal of her son's school, thinking he'd help put her in touch with other parents, but he wouldn't. So she posted fliers throughout the community advertising the first meeting. Two hundred parents showed up.
The group's purpose was to learn about different ADHD medications and exchange parenting tips, but as parents started swapping stories and educating themselves about their rights under federal special-education laws, they discovered that some administrators were lying to them, saying they couldn't force teachers to make accommodations and claiming they didn't have enough money or staff to provide special services.
Meetings were initially held at Oakridge High, where Adam is enrolled, but administrators there weren't comfortable with the group, Lowe says, and discouraged other parents from joining. So the parents now communicate by e-mail or by getting together outside of school.
Lowe has some ideas about what's behind the hostility that parents of special-ed students say they face. "Historically, special-education students weren't involved in regular education, and when laws changed to include them, it was viewed by some as an encroachment," she says. "I constantly hear administrators say that special-education students cost too much money and that because the federal government doesn't give schools enough money to educate them, they have to take money away from other students and programs, and that sets up antagonism."
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.
"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."
Fountain-Fort Carson High School, which was also featured in the study, has had better luck with self-advocacy. Wanda Hughes, a special-education teacher at the school just south of Colorado Springs, teaches a self-advocacy class for freshmen and sophomores. Like Lambros, Hughes helps her students understand their disabilities. She also helps them put self-advocacy skills into practice. At the end of the nine-week block, the students are required to approach a teacher they don't know, describe their disability and explain the modifications they need. Hughes coaches the teachers ahead of time to be difficult; she asks them to tell the kids things like, "You don't look like you have a disability," and "If I modified your test for you, it wouldn't be fair to the rest of the students."
"I wanted the kids to get practice for when they run up against a teacher who isn't so nice," she says. "It really empowers them."
L.E.A.D. is split in two, with eighteen sophomores, juniors and seniors in the advanced class, and the rest in the freshman class. They meet separately each Friday for a support-group session where they're free to talk about anything that's going on in their lives, regardless of whether it has to do with their learning disabilities.
On a recent Friday, the older students talk about how just knowing they're not alone has helped boost their self-esteem. They talk about how they've derived confidence from standing up to their teachers and peers. Some kids recall how terrifying it was to be called on to read aloud in class before they knew it was okay to tell their teachers that they'd prefer not to. But most of all, the students say, it's been a relief to discover through this class that they're not stupid.
Drew Kensinger, a junior at Cheyenne Mountain High School, has always had a hard time with reading, spelling and sentence structure. "I can't get my sentences put together," he says. "My words get mixed up."
His friends wondered why he was pulled out of the regular classroom in elementary school; he had to go to what was called the "resource room," where he'd get extra attention from a special-education teacher. "It was embarrassing. I was made fun of. They'd be like, 'Why do you have to go down there?'" he recalls. But now he's not afraid to talk about his learning disabilities.
And neither is sophomore Aimee Gravette. Diagnosed with attention deficit disorder in the eighth grade, she also struggles with reading. "Elementary and junior high were horrible. I just thought I was stupid," she says. "When I'm sitting in class, I take in everything around me. I'll concentrate on the pencil tapping or the fan blowing and block out what the teacher is saying. And I turn around a lot in class, so now I ask my teachers to sit me in the back of the class, against a wall, so I can look forward. I also ask for extra time on tests."
The requests seem simple, but to Aimee, those accommodations mean the difference between passing and failing. And just two years ago, she wouldn't have been able to ask her teacher to make those small changes. "In junior high, there is no way I would have been able to sit here and talk about this," she says. "I would have been bawling. In eighth grade, I had two meetings [to discuss educational plans], and I cried the whole way through. My parents talked the whole time. I never used to want to go to those meetings, but now I'm excited about going to them. I run my own meetings, and my teachers respect me for it."
Some of the younger kids aren't as active yet in their education, and part of that has to do with their parents. "My mom doesn't like it when I go to the meetings. She feels like she can get more out of them," says freshman Hillary Howes, who has ADD, reading problems and seizures that affect her ability to process and express her thoughts. "It's basically my meeting, but she says she'd rather me not go. I don't care either way. I've gone to one."
Quinton Wilder, also a freshman, is more eager for independence, however. A car accident left him with a traumatic brain injury that impaired his short-term memory. "My mom gets overworked about my schoolwork," he says. "Like in history, we skipped a chapter and she didn't believe me, so she called the school. She still treats me like an itty-bitty kid."
The ultimate goal of the L.E.A.D. class is to prepare students for life after high school. "If it wasn't for the L.E.A.D. group, I'd probably have second thoughts about going to college," Aimee says. "Everyone in our group wants to go to college now, and the practice we're getting advocating for ourselves is all working up to us talking to our teachers on our own."
While it's true that most students will have to fend for themselves in college, the University of Denver, at least, has a support group similar to L.E.A.D. that's called Belay. "We had a student two years ago who said, 'I wish I knew the things I know now back in high school.' He wanted high school kids to know the opportunities for them in higher education," says Ted May, the university's disability-services director. "That got us thinking about doing a leadership program.
"There are 425 students with a documented disability on campus, and that's pretty significant, because it represents 10 percent of the undergraduate population," May continues. "I always wanted to see students with disabilities take an active role at DU. Students would express interest in forming a group and get together for a few meetings, and then it wouldn't continue. I think that was because of the stigma."
But a team-building event held this past fall as a kickoff for students with disabilities gave the group the boost it needed. Now it's more active in speaking to faculty members and fellow DU students about the challenges of having a disability in college. And the thirty-member group also holds an annual meeting with high school special-ed students.
"It's not designed to be a recruiting tool for DU, but to teach high school students about the college experience as a special-needs student," May explains.
The group formalized this year and finally chose a name for itself -- a name the students felt provided the perfect analogy for the assist-ance they offer one another. "A belay is nothing more than a clip, a small thing," May says, "but it offers a great deal of support."
Mary Anne Fleury, a parent and former special-education teacher in Littleton, is trying to do for kids in the Denver area what L.E.A.D. has done for students in Colorado Springs and what Belay has done for those at DU. She knows she has a big task ahead of her, but she wants to be able to give other kids what comes naturally to her son Matt, who is self-aware beyond his twelve years and doesn't give a second thought to speaking up for himself in school.
Fleury is highly respected in special-ed circles in Colorado; for the last six years, she's been operating the Colorado Advisory Network, a nonprofit advocacy service for children with special needs. When parents can't seem to get the accommodations they want for their kids, they often turn to CAN, and it's usually Fleury who educates these parents about their rights and even accompanies them to IEP meetings.
She's always had an interest in reaching out to people who need help, so it seems only natural that Fleury has made a career of helping those with learning disabilities. "My mom said that when I was three, I wanted to help the kids who needed it. In elementary school, I volunteered in the special-education classroom," she says.
Fleury has a bachelor's degree in elementary and special education and a master's degree in special education with an emphasis in teaching the emotionally disturbed. She has taught elementary school in Chicago and special-ed classes in Denver. She quit teaching, though, when Matt, the eldest of her four children -- and the only one with learning disabilities -- was born. Several years later, she formed CAN. And now Fleury is ready for a new challenge.
"We had talked about training kids for a while," Fleury says. "I saw how Matt has been able to understand his disabilities and how he's been able to tap into his strengths, and in working with other kids, I've realized that their parents hadn't explained anything to them -- probably because they didn't know how to explain anything. Most kids I've worked with don't understand why they've been labeled with a learning disability, and most don't even know what their disability is; all they know is that they're in special education and they're treated as if they're stupid. That's when it dawned on me that kids can really benefit from being told everything and not having their disability kept a secret."
In February, Fleury started Kids CAN!, a program that helps children develop the self-confidence necessary to become their own advocates. She charges $15 an hour for group trainings -- the Boulder Valley School District has already arranged to have her do a workshop there in the fall -- and $25 an hour for individual trainings, but she hopes to secure a government grant so that she won't have to charge anything.
Her approach involves explaining the ins and outs of a particular learning disability to students and their parents and describing how that learning disability manifests itself in school. She also teaches kids to accept their disabilities and helps them develop strategies for overcoming them. She only works with kids in the fifth grade and higher because, she says, it's not realistic to expect younger kids to advocate for themselves.
However, some people doubt that Fleury's efforts -- or those of any self-advocating student -- will work.
"That's all well and good, but here's the drawback: By the time a teacher gets the class settled down and gets into the heart of the lesson, the bell rings. I'm not saying self-advocacy is a negative thing; the reality of it is it just doesn't work," says the mother of a dyslexic sixth-grader in the Cherry Creek School District, who asked to remain anonymous. "It's like Communism: In theory it sounds good, but try putting it into practice. I mean, how do you teach children to advocate for themselves when they don't even know how to ask questions?
"They imposed this big self-advocacy thing on us last year," she says of the district. "They wanted it to be one of my daughter's goals. But the way I interpreted it was that it was a way to get parents out of the way."
Gerri Masson, a learning specialist with a private diagnostic clinic for special-needs kids, also helps children understand and express their disabilities, but she doesn't call it self-advocacy; rather, she says, she takes a team approach in which she also works with kids' parents and teachers. "Self-advocacy is a relatively new phenomenon. There's a lot of emphasis now on kids empowering themselves, but it's really hard for a kid to be his own advocate when the person he's advocating to doesn't have a clue. Where it's misused is when all of the impetus is placed on the child," she says. "There really needs to be a partnership between educators, kids and families."
Fleury understands the reservations people have with self-advocacy, and she realizes that in order for her program to work, parents have to encourage their kids and schools need to be open to the idea of hearing directly from students. And she agrees that it's not enough to just write self-advocacy into a child's IEP. "Sometimes teachers will just leave it up to the kid to take the initiative, but what's really going to start the process is to make the child understand his learning disability and come up with strategies," she says. "Teachers really need to get on board with this."
When Fleury sits down with students, she starts by assessing their level of understanding about their situation. "Some kids don't even recognize that they have a disability," she says. With those kids, Fleury has to start from scratch, explaining to them in simple terms why they learn differently from their classmates.
For kids who already have a basic understanding of their disability and how it impacts their schoolwork, Fleury uses role-playing techniques. Pretending to be the teacher, she'll go through a series of scenarios that the student might encounter. For example, with a student who has trouble writing or concentrating, she might pretend that it's the middle of English class and the child can't keep up as the teacher is writing notes on the chalkboard. Fleury will encourage the student to practice raising his hand in the mock class and asking her, as the teacher, to slow down or repeat what she just said. Fleury also teaches kids to talk to their teachers privately so that they'll understand why the student might ask for certain accommodations during class.
"Most of the time, those things are in their IEPs," she says, explaining that when students talk to their teachers about what they need, it reinforces what the teachers already have on paper.
Because Fleury has worked with only a few students so far -- including Chris Todd -- the results aren't fully known, but the progress she's already seen in one boy has inspired her. "The last boy I worked with has some social anxiety. He has trouble talking to people in authority," she explains. "I talked to him about his disability and what it means in school, and his one comment to me was, 'All I need is more one-on-one help.' It was so simple. During his IEP meeting, he was actually able to talk about the things we'd talked about. His mom couldn't believe he'd talked like that in a meeting and that the people on his IEP team took him seriously."
Fleury hopes that the boy and other kids will eventually feel as comfortable advocating for themselves as the L.E.A.D. students and her own son, Matt, who noticed that something was wrong when he was in kindergarten.
"He came home and told me he thought he was stupid because his brain worked differently than other people's," Fleury recalls.
"I didn't know how to write words, and other people did," explains Matt, who is now in sixth grade.
"A lot of kids know what they need; they're just too afraid to verbalize it," says Fleury. "If we teach them about their IEPs, they'll understand why they're there, and they can help write their own goals and objectives. We take so much of the process away from the kids. We think we know everything because we're the experts, but we never ask the kids what they need."
Fleury had Matt screened for a learning disability in first grade; the test showed he was borderline for attention deficit disorder. "His teacher disagreed with me and said he didn't have ADD because he was so focused," she recalls.
Things got worse for Matt in fourth grade. "I started to realize something was going on, because I kept spacing out all the time and it took me a long time to finish my work. I knew I wasn't doing the best quality work I could do," he says.
When he told his mom that, she had him tested again, and this time, the results were conclusive: He did have ADD. They also learned that he has obsessive-compulsive disorder, which explains why he manages to get good grades and can refocus after brief episodes of spacing out; the OCD, Fleury says, sometimes masks his ADD.
After he started taking medication for the ADD, his already good grades improved. "His B's went to A's, and his A's went to A-pluses," Fleury says. "I never knew his potential. Matt's a rare kid. He understands a lot about what's going on with himself, and I listen to him more now."
Because he has a mother who is knowledgeable about special education and is open to discussing it, Matt has never been afraid to tell people about his disabilities, for which he's managed to develop numerous strategies. "I remember when I was little, I had to tap things four times or else I was scared that life wouldn't go on," he says. "It was really annoying. It's good to know you have a problem, because then you can move on."
What Matt described is a classic symptom of obsessive-compulsive disorder; now that he knows why he felt he had to touch things repeatedly, he can tell himself that it's the OCD and that he won't really die if he doesn't tap the light switch four times. Still, the disorder sometimes makes schoolwork difficult. "He used to do his homework at school, and he wouldn't leave until he had it done," Fleury says. "He didn't participate in his Valentine's Day party in fourth grade because he wanted to finish his homework."
"If I don't finish something, I get a bad feeling, and I know that's probably my OCD," Matt explains.
In the middle of working on a recent assignment in which he had to put together a family photo album, Matt got stuck. Some of the photos he needed hadn't been developed yet, and he got to a point in the project where he felt that he physically could not move on. He thought about ways he could stop fixating on the missing photos and decided he could finish the project by filling in the album with existing family photos. When he finally got the new pictures developed, he replaced the ones he'd used as filler.
"Since I know about my disability and can strategize, it doesn't seem like I have a disability," Matt says. "I just seem like another normal kid."
Kathy Kennedy-Tuchfeld, Matt's fifth-grade teacher at Littleton's Highland Elementary School, appreciates it when students describe their needs to her. "The most powerful thing about self-advocacy is that kids learn that they have rights as learners. It sounds so simplistic, but it's not. So many kids have sat through class and suffered because they didn't know they could stand up for themselves and ask for what they need," she says. "It's incredible to hear them say they could do better if they had the reading material in bigger print or on tape. Modifications have always been written on paper, but the more kids are aware that they're entitled to those modifications, the more they're actually made."
Karen Todd is worried about her son. She thinks that in addition to ADHD, he might also be suffering from depression, but she's been unable to get a straight diagnosis. She's not sure what it will take for Chris to do better in school or be a happier kid. But he's set to graduate from high school in two years, and she wants him to have more to look forward to than his current job at McDonald's.
"Let's say, by some act of God, he gets into college. He's going to need to deal with his teachers on his own, and if he's never had the practice to do that, he won't be able to," Karen says.
She's called on her background as a speech therapist to help Chris advocate for himself, and he's met briefly with Fleury, but Karen wants him to meet with her again before the school year ends.
Recently, as Chris was leaving band practice with his mom, he reached into his backpack to get money for the soda machine and remembered that he'd received his latest report card. He dug it out of his bag for her, and she stared at it for a long time. Chris had a 1.8 grade-point average.
Karen let out a sigh and said, with a trace of hope in her voice, "Well, there are a couple of A's."
