Jane Komperda is just learning to hear vowels and consonants in her head. She's been paying close attention to the whisper and buzz certain letters make as they're mouthed so that she can sound them out while reading. Until now, she'd never thought about how words beginning with the letter "c" have an "s" sound when followed by an "i," an "e" or a "y," as in cinder, ceiling or cycle. She's also memorizing little tricks to help her spell. She'd never really understood that if a word contains a long vowel sound, it should end with "ge" rather than "dge," as in page (not padge).
With these newly acquired skills, she recently finished Because of Winn-Dixie, a children's story of a ten-year-old girl who finds companionship in a stray dog. It was a major accomplishment for this sixteen-year-old who just started her junior year of high school.
Jane is very proud of herself. In the past year, her ability to decode words has gone from a third-grade to a fifth-grade level, thanks to private tutoring. It's a small gain that has been a long time in coming. Throughout middle school, Jane languished in a special-education class, where she received virtually no direct reading instruction. Yet just before entering high school, she was told she no longer needed special services. Administrators in the St. Vrain Valley School District didn't quite know what to make of Jane. She's intelligent, articulate and mature beyond her years. Talking to her, you'd never know she struggles with anything, let alone dyslexia. After all, her reading comprehension is at the high school level. District officials like to cite Jane's "proficient" scores on the Colorado Student Assessment Program and good grades as proof that she doesn't need anything beyond what they're already offering. But the fact is, Jane's reading ability has yet to catch up to her IQ.
"Being so smart and being able to compensate so well, people don't see me as having a disability," Jane says. "If I were in a wheelchair, people would accommodate me."
In order to qualify for special education, students must take intelligence and academic-achievement tests. If the results reveal a discrepancy between intelligence and ability to progress academically, federal special-education laws require school districts to provide an Individualized Education Plan, or IEP, that spells out the services and accommodations needed for students to succeed in school.
Jane has had an IEP since she was in the second grade. Thinking she had something wrong with her vision, her parents had taken her to an eye doctor. The ophthalmologist determined that Jane did need glasses, but there was something more: She was dyslexic. The diagnosis explained much about the Komperdas' daughter, including why she didn't talk until she was well over two and why she had been a half-year behind in kindergarten.
Dyslexia weakened Jane's auditory sequencing and memory, causing her to struggle with reading, because she can't distinguish the sounds that make up words. But even though dyslexics often invert letters, it's not a vision problem. "They auditorily can't link which sound is 'b' or 'd,' for example," explains Robin McEvoy, a well-respected developmental neuropsychologist who works with dyslexics.
The condition is often inherited, and in Jane's case, her mother, Cindy, is mildly dyslexic. Her younger sister and brother were also recently diagnosed with dyslexia. And if Jane's struggles are any indication, they, too, may face problems in the St. Vrain schools.
Jane's real problems began when she entered Sunset Middle School. That's when she began following LANGUAGE!, a literacy curriculum developed by Longmont-based educational publisher Sopris West. Jane attended regular classes for every subject but English, spending that period in the "resource room," where approximately fifteen students with disabilities ranging from autism to Down syndrome went to get additional help. The 54-unit LANGUAGE! program, which contains lessons on everything from phonemic awareness and phonics to semantics and syntax, is supposed to bring students up to grade level in three years, with eighteen units taught annually. "The curriculum's multilevel approach facilitates implementation ease, allowing students in the same level to work cooperatively in small groups while advancing through the lessons," says the company's Web site. "In addition, direct instruction and independent practice also play primary roles in each student's learning progress."
But there was none of that for Jane. "We read short stories like Jack and Jill, and from those, we'd have spelling lists. There was no one-on-one instruction with the teacher, and nothing was individualized to help each of the students with their learning," she recalls.
By the end of the eighth grade, the class had fallen far short of Sopris's eighteen-units-per-year plan, instead covering that many units in three years. But Jane's mother was none the wiser. She assumed Jane and the class were progressing as promised. "I got reports that said she was doing great, and her grades were good," Cindy says. "I had faith that they knew what they were doing. Everything looked kosher until she got to high school and they said she didn't need services anymore," Cindy says.
She knew her daughter was still far below grade level in reading, so Cindy was shocked when she heard the news during an IEP meeting before Jane's freshman year. The Sunset Middle School psychologist had averaged Jane's communication, spelling, reading and math scores from a set of standardized tests and determined that she no longer qualified for special education. Jane's extra efforts to compensate for her dyslexia had gotten her nowhere. "They said she'd need accommodations, but no special education and no IEP," Cindy says. "That meant nothing, because accommodations aren't enforceable without an IEP."
Cindy had been reading a book about IEPs that suggested getting a professional advocate to come in and manage the discussions. She found one in Yael Cohen, who has been helping protect the rights of special-education students in Colorado for more than a decade. With Cohen's help, the Komperdas sent the school district a letter saying they disagreed with the testing.
The district acknowledged that the school's evaluation was flawed and agreed to pay for an independent test. In a July 2001 letter to the Komperdas, St. Vrain Special Education Services Director Bob Roggow wrote, "I concurred with your opinion that the June 4, 2001, staffing decision is questionable due to inappropriate procedures and an insufficient assessment for determination of special education eligibility."
Cohen suggested that the Komperdas hire Robin McEvoy to conduct the test, and her data revealed that Jane had made minimal progress in reading during middle school. Based on those results, the district agreed to keep Jane in special education. But the service they offered was little better for Jane than LANGUAGE! had been. While her friends were being introduced to William Shakespeare and Arthur Miller, Jane was lucky if she could manage Judy Blume. Not that she even got a chance to read preteen books: The kids in her special-education English class were given a textbook that taught them how to read from a phone book, how to order from a catalogue and how to look up words in a dictionary. "I opened up this book and was like, 'Oh, my God. This is for someone who can't even function in society,'" Cindy recalls.
"A lot of the kids in that class were capable of more," Jane says. "I think the teacher just had too many kids, and it's impossible to teach every kid to their standards."
In addition to following that textbook, the students spent months discussing a credo for people with disabilities in an effort to raise their self-esteem.
"There was nothing to help me improve in reading," Jane says.
"Or to prepare for college," Cindy adds. "Then again, kids like Jane aren't expected to go to college."
After Cindy made several requests for a meeting to discuss Jane's IEP, the district finally scheduled one. Since she wasn't happy with what her daughter was being taught in the special-education English class, Niwot High administrators said Jane's only option was further instruction with LANGUAGE!, even though it had failed her in middle school. However, the program wasn't offered at her school, so they said Jane would have to go to Longmont High School, go back to Sunset Middle School, or have someone come to Niwot and administer the program. Regardless of her choice, the administrators said they couldn't guarantee that Jane would receive one-on-one instruction -- despite Sopris's mandate that LANGUAGE! be personalized.
It only made matters worse when Roggow told the Komperdas that Jane only needed to reach an eighth-grade reading level by graduation. Cindy couldn't believe what she was hearing: "That's discrimination!"
"We don't do anything in particular for dyslexics," explains Mary Sires, executive director of student services for the St. Vrain Valley School District. "Dyslexia is not something educators diagnose, so people in education are not trained to identify or treat it. Dyslexia is considered a medical diagnosis."
"If dyslexia exists but it's not the school district's problem, then whose problem is it?" asks Cohen, Jane's advocate. "I mean, you don't go to your doctor and take a pill for it. Reading is the job of the schools, and every district in America is looking at reading because of the No Child Left Behind Act."
Sires says the No Child Left Behind Act, which Congress passed in 2001 and which requires all school districts to regularly assess student progress in reading and math, is an example of the government telling schools what they should do without providing adequate funding. St. Vrain got just over $2 million to implement the act and serve all 20,000 students in the district. But that's nearly the amount St. Vrain gets from the feds annually just to serve its 1,774 special-education students. Sires doesn't know how many of those special-education students are dyslexic, but 602 of them are tagged with the perceptual or communicative disabilities label -- the category under which dyslexics probably fall.
"I don't know of an expert on dyslexia in public schools," Sires says. "It would be astounding if we could access people like that. We simply don't have the money. We are trying to do the best we can with the money we have."
Educators may not diagnose dyslexic students, but that doesn't mean they can't help them. A great amount of research has been conducted on dyslexia over the past decade, revealing that there are three areas in the brain responsible for speech and that dyslexics can't always access the portions that help them analyze words and link letters to their appropriate sounds. However, programs that use a multi-sensory approach to teaching, in which kids learn how to analyze phonemes (the small segments of sound that make up words), pull apart words into their syllables, link letters to those sounds and learn to automate the process of reading, have been proven to help.
Most school districts are now using multi-sensory techniques to teach reading. The Adams 12 School District, for example, received a grant several years ago to train teachers in multi-sensory techniques, and although the funds have since dried up, teachers are still using the methods they learned and passing them along to new teachers. In addition, the district uses LANGUAGE! and conducts phonemic-awareness training for early childhood education teachers. Those techniques are not geared toward dyslexic students in particular, explains Adams 12 spokeswoman Janelle Albertson, but are meant for all struggling readers. Denver Public Schools has been using a variety of multi-sensory programs for several years, and Littleton Public Schools has people trained in multi-sensory techniques in every school. The Cherry Creek, Jefferson County and Englewood school districts also use multi-sensory programs. And Pueblo School District No. 60 has been using the Lindamood-Bell multi-sensory literacy program for five years with phenomenal success; approximately 900 teachers there are trained in the program, and reading scores in the district have been on the rise ever since it was introduced.
Even though LANGUAGE! is a multi-sensory program grounded in research, Cohen says it doesn't contain enough phonemic-building material for a dyslexic student like Jane. "LANGUAGE! is a program that does a little bit of everything. Teachers are generally trained to be most comfortable with vocabulary and comprehension, and if they're not trained in phonemic awareness, they won't do a ton of it. What Jane needed was systemic, intensive instruction in phonemic awareness," she says.
The purpose of special-education laws is to ensure that instruction is tailored to students' individual needs. No matter how good a program is, it can't work for all students unless it's modified to strengthen their particular weaknesses. However, stating that education must be individualized and actually providing individualized instruction are two different things. The federal government in the 1970s created an extensive set of laws meant to serve and protect students with special needs, which later came to be known as the Individuals with Disabilities Education Act. But as happens with so many unfunded mandates in education, the feds never showed districts the money. "We were supposed to get 40 percent of the excess costs to support a student with an IEP from the federal government and 75 to 80 percent from the state," Sires explains, "but the feds only give 12 to 15 percent and the state gives 18 to 20 percent. So the burden of special-education costs really come from the local district."
On top of special-ed costs, most districts are cash-strapped in general, though probably none more so in Colorado than St. Vrain. District officials tried to fix major budget problems last summer without telling anyone, and the coverup erupted into a scandal in November after voters approved a $212 million school bond. St. Vrain, it turned out, was $13.8 million in the red. To keep schools open, the state treasurer's office loaned the district money, St. Vrain froze wages, and parents and businesses donated bare necessities such as pencils and paper.
Still, the law is the law, and IDEA requires districts to provide students with a "free and appropriate" education. When schools can't do that on their own, they're supposed to reimburse parents for outside programs, no matter what the cost. But districts and parents often disagree over what constitutes "appropriate."
Since the Komperdas found LANGUAGE! to be inappropriate, they decided to find Jane a tutor. But by that time, she was well into her second semester of freshman year and just sliding further behind. Plus, the district refused to pay for the extra help, which has cost the Komperdas more than $11,000 so far. "They said, 'We feel we have an appropriate program in our district, and you don't want to use it,'" Jane says.
Privacy laws prevent Sires from commenting on Jane's case, but she stands by the LANGUAGE! program, which was brought to the district's attention six years ago by a St. Vrain literacy teacher who also happens to be the parent of a special-education student. "We took a look at the video on it, and we were like, 'We need to have this,'" Sires says. "It's for kids who need a structured program with a strong phonetic base but also a multi-sensory approach. It works really well for learning-disabled kids and second-language learners. We've seen excellent results. We have kids 'graduating' from special education because of it."
In a November 2001 letter to Cindy's attorney, the district's attorneys noted that St. Vrain "truly believes that this program is superb (in fact, the state of California has adopted LANGUAGE! statewide) and meets Jane's needs and that she did make great progress."
"I don't care if it's God's gift to the universe," Cohen counters. "It didn't work for Jane. She wasted three years doing it, and we have the test scores to prove it."
It's common for parents to disagree with districts' assessments, although no one has ever challenged St. Vrain's use of LANGUAGE!. And in the fourteen years Sires has been the student-services director in St. Vrain, she says only two contested special-education cases have gone to due process -- a legal proceeding in which a state-appointed lawyer hears both parties' arguments. "Anyone has the right to go out and find a tutor, but they also have the obligation to pay for it," Sires says. "School districts have an obligation to find a methodology that works. If we don't, then we could be obligated to pay." And in her opinion, LANGUAGE! works for most kids with learning disabilities.
Cindy says the program might have worked for Jane had it been implemented properly. While juggling school, tutoring and several extracurricular activities -- Jane shows dogs, is on color guard and sings in the school choir -- she managed to excel, earning a 3.5 grade-point average. And that's part of the problem. "Whenever I have a staffing with an articulate student -- especially one with good grades -- I find people dragging their feet about serving them," McEvoy says. "It's hard for schools to see this as a problem. They'll say 'She's doing well and she's taking tough courses, so what's wrong?' Then the mom will say, 'But I'm reading all the coursework to her, and she has two tutors!'"
That's Jane in a nutshell. "Not only do I have a lot of support at home, I have my own compensation skills," she explains. "If I don't know a word, I skip it and use pictures or other text to figure it out."
Jane does some of her schoolwork in a study hall for special-education students, where a teacher helps her. But she never has enough time to complete her assignments during the day, so she takes a lot of her work home at night. Even with Cindy's assistance, she can spend four to five hours on it. Sometimes her mom reads passages aloud so Jane can answer questions about the text; other times Cindy skims the readings herself and summarizes the material for Jane. "There were quite a few times where I'd sit and cry because I had so much work to do," Jane says. "My teachers always said they'd give me extra time to do my work, but you can't add hours to the clock. I have to sleep sometime."
Most of Jane's teachers are accommodating, and special-education students typically get extra time on tests, are given copies of class notes and are allowed to use books on tape or calculators, even laptops. But not every teacher has been understanding. "There have been a few who don't get it or who think I'm just lazy," Jane says.
Like her ninth-grade health teacher, who made students who didn't finish their work on time do push-ups. Jane and Cindy had several meetings with him to explain the situation, but since there were hardly any writing assignments in that class, he didn't seem to understand her needs. Until the end of the semester. When Jane turned in an assigned paper, the teacher gave it back to her with every other word circled for misspelling. "He said, 'Are you dyslexic or something?' I was like, 'Duh!'"
Luckily for Jane, the administrators at Niwot High are very sympathetic and have gone out of their way to make sure she gets paired with teachers who work well with special-needs students; the principal and vice principal have even helped her transfer out of problem classes. "Without them," Cindy says, "I don't know what we'd do."
Jane is a classic overachiever. She's determined to succeed despite the setbacks dyslexia has posed. And she's not embarrassed to tell the world that she does daily battle with the written word. But her confidence is newfound.
Although Jane never doubted her own abilities, she went through many years of school worrying that other people thought she was stupid. She dreaded being called on to read aloud in class, because other kids would roll their eyes and sigh with impatience as she stumbled over words. While working on a writing assignment in the third grade, she asked her best friend how to spell a word. The girl snapped back, "Can't you find someone else to tell you how to spell everything?" Even though her childhood friend has probably long since forgotten the slight, the sting is still fresh for Jane. "The way she said it and turned away...it really hurt to be rejected like that," she says.
Lately, though, Jane has made a conscious effort not to worry so much about other people. Her close friends are very supportive and non-judgmental, and that's helped. "I don't care anymore if people think I'm a teacher's pet. I've heard that a lot before because I get special help."
In her tenth-grade communications class, students were assigned to teach each other something, so Jane chose to give her classmates a lesson on dyslexia. She took three Mother Goose rhymes and jumbled the letters so they could look at what she sees when reading. "The kids couldn't figure out which rhymes were which," she says. "Afterwards, they were like, 'Wow, you're dyslexic.' It really opened their eyes. They saw that I get special services to survive in school, not because I'm stupid or because I'm the teacher's pet."
Confronting her classmates' misperceptions about dyslexia gave her a much-needed boost. So did being in a regular English class. Frustrated and wanting to catch up to her friends, Jane had decided to make the switch last year. It was the first time she hadn't been in special-education English since fifth grade. "Most of what I can read is not at my intelligence level, so I'm bored with it," Jane says. But with her tutor's help, she was joining her friends in Romeo and Juliet and The Crucible.
Just before school ended last June, Cindy shared Jane's latest reading scores with the district to demonstrate the progress she'd made with one-on-one instruction. Despite the two- grade-level jump in reading, the district still refused to pay for the $60-an-hour tutoring, just as it had throughout Jane's sophomore year. "I've really seen a difference working with the tutor," Jane says. "My fluency has come up, and I don't skip words like I used to."
Jane's tutor, Deb Ingels, who's well trained in working with dyslexics, says she doesn't know enough about the LANGUAGE! program to compare it to the techniques she uses. On paper, the two methods look similar, as both include phonemic awareness. But with Ingels, Jane gets the intensive, direct instruction she needs. And the tri-weekly, one-hour sessions are tailored to her specific weaknesses.
Since the Komperdas refused to put Jane back in a special-education English class in which LANGUAGE! was offered, district officials suggested trying something else. They said a special-education teacher would work with Jane on her homework and use her history or biology texts to teach her how to read. But Jane found that idea laughable. "The point they don't get is that I can't learn two things at once. I mean, yes, I can multi-task, but I can't learn the content and learn to read at the same time," she says.
Another suggestion was to use strategies from a book by University of Florida education professor Richard Allington. But the district never told the Komperdas exactly what those strategies were, and What Really Matters for Struggling Readers seems more like a set of common-sense principles than anything that could help Jane. A synopsis of the book on Amazon.com explains that "material on phonemic awareness and phonics is omitted in favor of discussion of the importance of reading volume, access to books, reading fluency, and fostering thoughtful literacy. Each chapter includes a brief review of key research literature and suggestions for expanding the curriculum and designing classrooms."
During Jane's last IEP meeting of the year in May, administrators told the Komperdas they could take what they were offering or leave it. Unless parents go through due process or file a federal complaint with the Colorado Department of Education, they have no other choice. If a parent doesn't do one or the other and the district believes its program is adequate, Sires explains, "the district will continue to do the program it's been doing, and not what the parent wants."
But parents can file federal complaints only when a school district has either ignored something in their child's IEP or completely refused to provide services, which wasn't the case with Jane. And going through due process is cost-prohibitive, easily racking up several thousands of dollars for parents. The Komperdas have already spent $1,500 to have attorneys present for some of the disputed IEP meetings (the district has spent $6,000, according to an open-records request filed by Cindy). Plus, it's often hard to find experts willing to testify against a school district, since doing so could hurt their careers. "If I can't find a tutor to testify, I don't have a case," Cindy says.
So Cindy and Jane will just try to make do this school year. "We'll do what we do every year, and call a meeting with her teachers to tell them what accommodations she needs," Cindy says. "We'll ask them what books she'll be reading so she can get them ahead of time and start reading them, and we'll ask what the long-term assignments will be so she can get started on the research."
Jane just wants the bickering to stop. She's sick of fighting for what comes so easily to other kids. "At the last IEP meeting, I was explaining to Mary Sires what I'd been doing in tutoring, and she asked me how long I've been doing it. When I said a year, she said, 'What? And you still don't get it?' I was like, 'Excuse me -- I have other schoolwork to do.' I was assertive in the way I responded; I wasn't the sweet little Jane I normally am," she says. "There's one thing that if I never hear again, I'll be happy: Every time I'm in a meeting with Mary Sires, she says, 'We're going to have to agree to disagree.' That gets us nowhere. There have been so many times when I've said, 'Why can't you just help me? Why can't you just help me read?'"
Jane isn't sure what she wants to do with her future just yet. She's a talented photographer, and she's into acting and singing. In fact, she recently began performing at Jesters, a Longmont dinner theater. "I'm not interested in being a businessperson," she says. "I think I'd rather do something artsy."
The one thing she's certain about is going to college. She's a little worried about how she'll do without her mom around to help, but that's what tutoring is all about. "The goal is for her to become her own teacher, because she's the only constant in this. When I'm not here and her mom's not here, she has to be able to remember these skills on her own," says Ingels.
To do that, she uses games and study cards with drawings of lips in different positions representing the letter sounds we make with our mouths. "You need to get the language into their body so they can feel it," Ingels explains.
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She starts out playing a game called "What could this be?" and attaches some of the mouth cards to a large dry-erase board in her basement. Jane must sound out the word it spells. "Ssss," Jane says, looking at the first card. "Um." She stares at the last card a while before saying "er." S-um-er. Summer. It's Cindy's turn to create a word for Jane. This one's a bit harder, but Jane makes the sounds shown on the lip cards and figures it out. Th-r-ah-t-le. Throttle.
Next, it's time to review suffixes, and there's another game that helps Jane remember them. Only this one requires her to race someone. They choose a visitor to be the contender. Ingels says the anxiety of being put on the spot and forced to think about something that comes automatically to most people is what dyslexics feel every time they read.
Jane goes up to the board and makes two columns: one for the nine consonant suffixes and one for the eight vowel suffixes. She and her competitor have sixty seconds to write down as many as they can.