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Guide to Understanding Dyslexia

We investigate why this reading disorder is so tough to spot — and treat.
 

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My 7-year-old, Theo, is a sweet, bright, curious kid. He has an uncanny memory and often says, “Remember that time…” about something that happened when he was just 3.

But when it came to reading, I had a gut feeling something wasn’t quite right. At preschool, he wasn’t interested in practicing letters or rhymes. His teachers noticed, but weren’t too concerned. Instead, they focused on my son’s frequent baby talk and got him speech therapy right away.

Then came kindergarten. While his classmates eagerly sounded out words, my guy hated even trying. “My husband is dyslexic. Could Theo be, too?” I’d ask his teachers. “He’s not reversing his letters,” they’d say. “Give it time. He’ll catch up.” In first grade the clashes over reading got worse. My son stumbled over at and the. He’d yell “I’m a failure!” and “My brain doesn’t work!” He was in tears, and so was I.

Still, his teachers reassured me, pointing out that Theo worked hard and was moving up reading levels. Eventually his first-grade teacher offered to tutor him twice a week. While Theo felt he was getting better, honestly, not much changed.

Finally, a speech therapist at the school heard me discussing my concerns. She piped up, “If you think your son might have dyslexia, we can test him this week.” (Later I learned that all the teachers at the school know in-school testing for dyslexia is available, but many are shy about pulling the trigger, wanting to do all they can to help first.)

The following day, a reading specialist tested Theo’s ability to detect and discriminate differences in speech sounds. She spoke to his teachers, examined his medical history, and reviewed his written work. Then she confirmed what I already suspected: My son has dyslexia.

A Widespread Problem

“Dyslexia is the most common learning disability, accounting for over 80 percent of these disorders,” notes Sally E. Shaywitz, M.D., co-director of the Yale Center for Dyslexia & Creativity. It affects one in five kids, which means a typical classroom has at least four to six dyslexic students who require diagnosis and targeted reading instruction, Dr. Shaywitz says.

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Unfortunately, the majority of these kids fall through the cracks: Either they’re never identified or they don’t receive effective reading interventions. One reason: The disorder is still widely misunderstood.

Many people think of it as reading backwards, says Guinevere F. Eden, Ph.D., director of the Center for the Study of Learning at Georgetown University Medical Center in Washington, DC. But dyslexia isn’t a visual problem, Dr. Eden explains. Instead, it’s a neurobiological disorder that interferes with a child’s ability to access the individual sounds of spoken words.

Comparing brain scans of typical readers to dyslexics, researchers have found stark differences. When kids with dyslexia try to decode written language, the brain regions involved function less efficiently than in typical readers. Dyslexics have trouble matching letters on a page with the sounds those letters make. No wonder these kids often stumble over words as they learn to speak, read, and spell.

Hidden in Plain Sight 

What also makes dyslexia hard to spot is that many kids are savvy at masking their struggles, says Laura Bailet, Ph.D., a school psychologist in Jacksonville, FL. For instance, they’ll memorize short books or use illustrations as clues. “Dyslexia is an unexpected difficulty,” Dr. Shaywitz notes. “That’s the paradox of the condition: Kids can be strong critical thinkers and problem-solvers and also dyslexic.”

Most adults, meanwhile, aren’t equipped to spot the signs of dyslexia when it’s most critical — before third grade, the point at which students must read in order to progress in other subjects.

A poll by the Emily Hall Tremaine Foundation found that only 36 percent of teachers felt their school prepared them to deal with learning disorders, including dyslexia. Even with training, most lack the tools or time to identify and help struggling readers, says James Wendorf, executive director of the National Center for Learning Disabilities.

Compounding the problem, most teaching colleges fail to emphasize the need for — or provide access to — evidence-based reading instruction, says Sandi Jacobs, a former elementary school teacher and managing director of state policy for the National Council on Teacher Quality. Only evidence-based methods have been proven in large-scale studies to make significant improvements in reading ability, explains Dr. Shaywitz.

It’s not just educators who are in the dark, though: Parents also know very little about dyslexia’s early warning signs. More than two-thirds think that difficulty rhyming and mispronouncing words are things preschoolers grow out of, according to the Tremaine Foundation poll. Meanwhile, inability to rhyme is one of the earliest tip-offs that a child has dyslexia.

Even clued-in parents typically wait a year or two before getting a child evaluated, says Wendorf. That denial is normal: “We all want our kids to develop in typical ways,” he says.

That’s what happened to Traci Haigis of Alexandria, KY, whose daughter, Kayla, couldn’t recognize the tiniest sight word by the end of kindergarten. Yet Haigis couldn’t accept that her child might have a disability: “I thought things would click one day.” When Kayla was in first grade, Haigis attended a conference on dyslexia at the suggestion of a teacher. “I cried listening to the symptoms. They were talking about my child,” she says.

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Treatment Gaps

Both Kayla and my son Theo got lucky. Today they receive in-school services that are making a difference. Kayla gets daily specialized reading instruction; Theo gets this three times a week. Sadly, our experience is far from common.


Although public schools are obligated by federal law to evaluate students suspected of having learning disabilities, the law doesn’t guarantee kids will get tested or treated for a specific one, including dyslexia. “Schools test to see if a child is eligible for special education services, and the criteria for eligibility varies by state. A bright dyslexic child may never qualify for extra reading help,” says Dr. Bailet.

Even when kids do get help, it may not be the best type. If Theo went to the public school down the street, like his buddy Spencer used to, he wouldn’t have access to a specifically trained specialist. “Spencer had daily sessions with a reading teacher who had no formal training in dyslexia. She just reinforced the same methods that weren’t working in the classroom,” says Tracy Crowley, Spencer’s mom. The Crowleys finally moved so their son could go to a public school that offered more effective instruction.

The Right Kind of Help

What makes such obstacles especially tragic? Experts have known how to teach dyslexic kids for decades, says Dr. Bailet. Floundering readers need small group instruction (preferably no more than four kids), so that teachers can closely observe whether a child understands and then pace the material accordingly.

Most important, there must be proof that an intervention actually works. “Parents must demand, ‘Show me the evidence,’ before allowing their child to be taught by a program,” says Dr. Shaywitz. Evidence-based instruction (such as Wilson Reading System or Success for All) is systematic, with a focus on phonemic awareness and phonics. That means kids must learn to detect and manipulate individual sounds (phonemes) within words. For example, there are three phonemes in bat: b-a-t. Once a child is able to detect each sound separately (a skill called phonemic awareness), she can map the sounds to individual letters and later to words on a page.

While it’s never too late to learn to read, the younger the child, the better, since it minimizes the academic and emotional toll of dyslexia. “When kids struggle to read, chances are they’ll struggle with other aspects of academics, too,” says Dr. Bailet. “Even kindergartners know when they’re working at a lower level than their peers — and it affects their social interaction, behavior, stress level, and self-worth. It’s heartbreaking — yet also inspiring to see what interventions can do.”

The good news is that it’s getting a little easier for dyslexic kids to get the help they need: At least 16 states have new legislation addressing the diagnosis and management of dyslexia. Even Congress is taking action. H.R. Res. 456 not only provides a universal definition of dyslexia, but urges schools and educational agencies to recognize that dyslexia has significant educational repercussions that must be addressed. (Go to House.gov to contact your representatives about supporting this bill.)

Kayla Haigis is proof of the power of proper early intervention. “She now reads second-grade sight words with 90 percent accuracy. Her confdence has soared. She knows she learns differently than her friends, but she’s just as smart,” says her mom.

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Now in second grade, my son still struggles with reading. So we practice spelling, pull apart compound words, and read together each day. It’s a lot of work for both of us and, honestly, there are still some tears. But it’s worth it when I catch Theo reading his Magic Tree House books by himself — or when he tells me he wants to be a writer like me when he grows up. I believe he can be. But more importantly, so does he.

Dyslexia: Biggest Red Flags
If your kid has any of these signs, talk to his teacher about testing:

  • Delayed speech in pre-K
  • Trouble recognizing and remembering rhymes
  • Family history of dyslexia
  • Baby talk/ pronunciation issues
  • Trouble learning letter names and sounds
  • Inability to sound out simple words, like mat or hot
  • Slow, laborious reading
  • Difficulty remembering sight words

Resources for Parents

  • Concerned about your preschooler’s pre-reading skills? Readingbrightstart.org can alert you to the signs that your child needs help.
  • The Yale Center for Dyslexia & Creativity (Dyslexia.yale.edu) is packed with the latest information about the condition; you can also pick up Dr. Shaywitz’s book,Overcoming Dyslexia, which has become a top resource for parents and teachers.
  • If your child needs an evaluation, visit the National Center for Learning Disabilities (Ncld.org) site for guidance.
  • Find expert-approved resources at Understood.org.
  • The International Dyslexia Association (Interdys.org) offers a list of which reading interventions they support.

Photo Credit: Levi Brown

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