The invisible disability
Alabama schools won't accept that the D-word exists

Monday, March 06, 2005

Throughout Alabama, thousands of bright children struggle with the written word in public schools that don't recognize or test for dyslexia. The children have trouble spelling, connecting sounds to letters and remembering what words mean.

Most can be taught to read, but many of them are falling behind.

"The teachers aren't trained," complains Lorraine Fredrick, a mother seated at the rear of the monthly meeting of the local dyslexia support group.

In which school system aren't the teachers trained? "All of them," comes the immediate chorus of about 20 parents and grandparents. "The United States," says Fredrick.

Frustrated parents say school officials fight providing their children with extra help because of the potential expense of treating a puzzling disability that may affect as many as one out of every 10 children. Cheryl Jones, a professional parent advocate, explained schools' position as she sees it: "If we assess it, then we have to address it. And sometimes we are not sure what to do with it, because there are several forms of dyslexia."

State officials say federal law does not list dyslexia as a special education category. Otherwise, public schools would be required to offer special services, as they do for autism and other recognized disabilities.

"Teachers are kind of in a bind," Dr. Denise Gibbs tells the support group gathered at Asbury United Methodist Church in Madison. As director of the Scottish Rite Foundation of Alabama Learning Centers, Gibbs travels the state training teachers and diagnosing dyslexic students.

Gibbs says schools have to wait until a child's achievement trails the child's IQ to provide extra help through special education. That means waiting for dyslexia to disrupt reading and drop grades while the child falls behind his classmates.

"Immeasurably and irretrievably behind," Gibbs tells the parents.

Teachers, who aren't qualified to diagnose students, often don't notice the problem until the third grade, she says. However, children should be identified in first grade to receive intense language lessons before the grades plummet.

But if a parent doesn't seek a diagnosis from Gibbs or someone else outside the school system, dyslexia almost always goes unidentified in Alabama schools.

No cure

Gibbs, who has a doctorate in special education, defines dyslexia this way: "It's a learning disability that occurs in students who are not retarded but have trouble reading because they have trouble with the sounds that make up words."

Letter reversals are a common symptom. For example, a child sees a "b" when the letter is a "d." But many young children flip letters. It doesn't mean they're dyslexic. Rather, dyslexia hinders reading and thinking in much broader ways.

For some dyslexic children, reading aloud or making rhymes may be impossible. For others, connecting meaning to a word or putting words in sequence is difficult. For many, spelling is a challenge. There can be trouble with short-term memory, organization, even telling left from right.

Dyslexia never goes away. Although there is no cure, there are proved pathways to improvement.

Many dyslexic children can learn to read with special lessons that break up the parts of words, link words to pictures, provide the rules of pronunciation and involve most of the senses.

Yet not all public schools guarantee this type of instruction. And between any two Alabama school systems, there is little agreement on how to handle kids who clearly can't read well but don't fit one of the state's disability categories.

Unspoken disability

"We get a lot of calls from families or teachers about dyslexia because they think it is part of special education," said Dr. Julia Causey, special education coordinator for the Alabama Department of Education. "Just because you have that label that does not mean you meet other criteria" for special education services.

School officials argue that federal law does not require schools to provide extra help if the student doesn't qualify based on testing for special education.

Dr. Katherine Mitchell, a state assistant superintendent, said the Alabama Reading Initiative and a program called Language! are designed to help all kids who struggle to read. She also said educators don't agree on a definition of dyslexia. The disorder comprises too many symptoms.

So, is there such a thing as dyslexia?

Mitchell avoids the term. "A syndrome exists that has an organic base that causes kids to struggle," she said. "Learning how to read is 10 times more difficult for them.

"Whatever their label, they are having trouble learning how to read. The struggle is real and it is frustrating."

Local educators are left to follow state leaders' view of dyslexia.

"It's not recognized at all," said Dr. Barry Carroll, superintendent of Limestone County Schools. "It makes it difficult to deal with the situation because there are no approved programs. Certainly, I think it's a real problem."

Parent learning curve

Angie Hood tells the same story as many parents across the state: You see the low grades. You talk to the child, you know he knows the answers.

You wait. Nothing improves. He's in second grade now. He still can't write his address but could give you directions to his house. Exasperated, you pay for private tests. You carry the dyslexia diagnosis to the school.

"They said we can't accept these. These are not our tests," says Hood, recalling her experience five years ago at West Madison Elementary. Mary Long, principal at the time, remembers Hood but said she can't comment on an individual child.

In general, Long said: "We take them through all the proper procedures at looking at eligibility for services. We've got state guidelines to follow."

The school starts with a team of teachers and administrators, who recommend changes in the classroom. After six weeks, they meet again to recommend more changes or maybe screening for special education.

Eventually, said Hood, the school tested Hood's son for a learning disability. He tested too high for special education, so there were no services for him. School officials told her he was fine, she said. "But he wasn't fine. He was failing reading," said Hood.

You persist. You study the disability, the suggested teaching methods. You haggle over accommodations and special lessons. You set up camp at the school. You attend meeting after meeting, "coming out feeling like you've been sucker-punched. They'd say they were going to do things and they wouldn't," said Hood.

You notice time passing. You check your savings. You can sue the system. Or you can switch to private school.

Hood chose private school.

Then she and two other mothers started the North Alabama dyslexia support group. The group counts 118 members on the e-mail list now.

A medical diagnosis?

Amy Sledge, director of special education for Huntsville, can't say how many dyslexia students attend city schools. She says that's because dyslexia is not one of the 13 disabilities listed in federal law.

But child advocates are quick to argue that dyslexia is a well-established learning disorder. It is not mysterious. The disability has been mapped through brain imaging in the last decade.

"A lot of information has come forward in the last 20 years and it hasn't reached everybody," says Jerry Burfit. "In some areas you just get an absolute deaf ear."

Burfit is president of the Alabama Scottish Rite Foundation, which is the charitable arm of the chapter of the Masons. The group made dyslexia its exclusive focus four years ago.

From 2001 to 2003, the group diagnosed 695 Alabama children and trained 3,868 teachers to better help those children.

There is no definitive count of how many students cope with the disability. Alabama, like most states, doesn't track them.

"Some schools systems will say it's a medical diagnosis and they don't have to test for it. It is under specific learning disability in federal law and school systems have to test for it," said Jones, the parent advocate.

Jones works for SEAC or the Special Education Action Committee of North Alabama.

Using a federal grant, the small outfit informs parents about their child's right to a free and appropriate education. Jones, occasionally brought in to represent a parent, will tell a reluctant principal: "If y'all don't have a test for it then y'all are going to have to pay for it."

Splitting hairs

What does it take to be recognized? For parents and school officials, the battle often hinges on the interpretation of federal law.

State officials contend that Congress didn't make dyslexia a separate category for special education services, that a diagnosis of dyslexia from an outside source doesn't change that. No federal category, no federal guarantee of special services, they say.

But a few parents and advocates answer that dyslexia is indeed listed in both the Code of Federal Regulations and the federal Individuals with Disabilities Education Act.

Some of this confusion can be explained by two ways of talking about the same disorder.

Alabama does work with children who have trouble with language and qualify for special education. "Specific learning disability" is the official federal category for reading delays that can't be explained by retardation or brain injury.

It is correct to say there is no stand-alone category for dyslexia.

But section 602 of the Individuals with Disabilities Education Act uses the term. It can be found there as an example of a "specific learning disability."

"Such term," reads the act, "includes such conditions as perceptual disabilities, brain injury, minimal brain dysfunction, dyslexia, and developmental aphasia."

Frustration

For many children, qualifying for special education isn't always an answer, anyway.

Schools may offer extra lessons in a "resource room" among students with unrelated disabilities, from Down's syndrome to traumatic brain injury.

Teachers "told me, you don't want him in there," said Jennifer Stone, "because that's what a lot of our special education kids are. They're behavioral problems."

Instead, she said her 9-year-old son, Garrett, at Sylvania High School, has been watching the dyslexia videotapes from the Scottish Rite. The Scottish Rite offers free copies to schools without other dyslexia programs. But Stone said they haven't helped her son. "I do watch them. They are very boring."

Dyslexia researchers say it takes a specific diagnosis, a well-matched curriculum and a trained teacher for a dyslexic child to learn to read. According to researchers, dyslexia must be diagnosed early so children can be trained to cope before they fall behind.

From Limestone County to Jackson County, parents grow frustrated with few programs and the lack of acknowledgment.

"They told me it was state law that dyslexia was not a learning disability," said Vickie Gant, whose son, Tyler, attends Section School in Jackson County. "I'm tired of going up against a brick wall."

Gant said her son is grouped with special education kids who do not have dyslexia. "Last week he begged me not to make him go to school," she said. "He's a regular 13-year-old that likes to skateboard and play video games."

From Athens to Guntersville, parents turn away from public schools. But that's not an option for everyone.

"Sometimes I think home schooling would be the best way to go, but I am not a stay-at-home mom," wrote Marty Richardson in an e-mail about her son and his experiences at Guntersville Elementary School. "It would be very difficult to work his school into our schedule and I don't make enough at my job to send him to a private school."

How many have it?

Alabama is not alone in its reluctance to search for dyslexic students.

"I realize Alabama sometimes takes some hits for being at the bottom at some lists; the good news/bad news here is Alabama's got company," said Tom Viall, head of the International Dyslexia Association in Baltimore.

Because most states do not recognize or test for dyslexia, they also don't track how many kids are diagnosed with dyslexia by outside agencies or doctors. Across the country, there are few reliable counts.

Gibbs tells the support group that researchers estimate between 10 percent and 20 percent of the population is somewhat affected.

But that estimate encompasses all sorts of struggling readers. For one child, dyslexia may mean he reads slowly. For another child, dyslexia may mean he will never be able to read well.

In her studies, Yale neuroscientist Sally Shaywitz also found no one tracked dyslexia, instead citing U.S. Department of Education figures that show 2 million school-age children qualify for special education for reading difficulties. She said the vast majority are likely to have some form of dyslexia, but many more dyslexic students never qualify for special education.

Viall uses his own numbers. The International Dyslexia Association, founded in 1949, claims 14,000 U.S. members, as well as thousands more in 60 other countries.

As head of the nation's oldest dyslexia group, Viall estimates 3 to 5 percent of the population has a debilitating form of dyslexia, meaning they will never be skilled readers.Using Viall's low estimate of 3 percent, that would mean more than 20,000 students in Alabama public schools struggle with a severe form of dyslexia. The number of those who struggle but could learn to read under the right conditions could be much higher.

"Why is this all of a sudden such an issue? Well, our economy has changed dramatically in one generation," said Viall, pointing out dyslexia wouldn't interfere in many factory or trade jobs. But most service jobs today require the ability to read, said Viall, even driving a forklift or checking out video rentals.

"A disability is a disability only if a society values that thing you don't do well," said Viall.

His organization suggests a new system where dyslexic students occupy a middleground between special education and general education, a system where teachers are trained to spot struggling readers in first grade. Those children are then sent for extra help in a "median tier," instead of being funneled into special education or held back.

"In every school building in America you have 10, 15, 20 percent of your kids who are going to fall into this group," Viall said of students affected in some way. "We know that there are ways we can teach those kids. The key is to identify them early."

Through the cracks

As Gibbs crosses the state diagnosing children and training teachers, working for a charity that neither answers to parents nor the schools, she has grown encouraged.

"Everything is coming to bear in such a good way now for dyslexic kids," she said. Some small systems, such as Madison city and Lauderdale County, have begun to accept dyslexia as a diagnosis, even opening programs for kids who don't otherwise qualify for special education.

So Gibbs worries that if dyslexia were suddenly recognized as a separate disability by the state, kids would receive the special education label but not necessarily the right help.

"I don't think that's something we should aspire to," said Gibbs. Instead, she promotes teacher training and early intervention.

Special education teacher Margaret Petty offers an unusual perspective.

Last summer, Petty took training to instruct dyslexic children at Rainbow Elementary in Madison. Petty makes an understanding teacher - she is dyslexic.

As a child, she learned the old-fashioned way. "Back then they didn't know what dyslexia was. It was, 'Just try harder.' " Today there are more diagnostic tests. More schools are training more teachers, even parents are becoming more aware, said Petty. But, she said, school systems need to do more to help children at the earliest ages.

Should dyslexia be recognized as a separate special education category? "Yes," said Petty, pausing briefly. "These kids sometimes fall through the cracks. You spend most of your life thinking you are stupid."