Diagnosis: Dyslexia

Detecting learning problems early is key to coping with this common disability

By Noelle Salmi

Julie Traun of San Francisco remembers how much her daughter Natalie looked forward to starting first grade. Natalie chose a pretty red dress, wore her hair in braids and happily headed off to school.

But the good feelings didn’t last. “Within three weeks, she was sobbing, had a stomachache every day and didn’t want to go to school,” says Traun. “When you see your kid go from being so happy and looking forward to school to being so sad and crushed and nervous, it kills you.”

Natalie had thrived in preschool, where teachers said she was “creative, determined, energetic and focused.” Yet at Natalie’s private elementary school, a French immersion program, Traun says her daughter was falling apart. While other kids were showing interest in chapter books, Natalie cried or hid under the table to avoid reading.

A school reading specialist suggested Natalie receive special testing. At the end of first grade Natalie underwent a comprehensive three-day evaluation at California Pacific Medical Center. The diagnosis was dyslexia.

What is Dyslexia?

Dyslexia, meaning “poor language” in Latin, is an inherited neurobiological condition affecting the ability to receive or express written or oral language. Although dyslexic children have normal-to-above-average intelligence, they may have difficulty reading, speaking, writing or understanding spoken language, says Dr. Nancy Cushen White, associate clinical professor and learning disabilities specialist at the University of California-San Francisco.

Also called “specific learning disability” (SLD), dyslexia affects boys and girls equally. The International Dyslexia Association (IDA) estimates that “language-based learning disabilities,” mostly dyslexia, affect 15 to 20 percent of the population. Of the nearly 44,000 students enrolled in public school special education in San Francisco, San Mateo and Santa Clara counties last year, almost half were diagnosed with an SLD.

Traun was in shock upon learning of Natalie’s dyslexia.

“You’re sitting there and thinking, ‘Why is this my daughter? Why is this hard for her? Why can’t she get these letters straight?’” she recalls.

By second grade, Natalie’s classmates were starting Harry Potter. Natalie couldn’t read three-letter words.

“I remember kids calling me stupid because I couldn’t read,” says Natalie, now a 15-year-old honor student. “I knew there was something different about me because everybody else was reading and I wasn’t.”

Because Natalie’s school did little to accommodate her learning needs, by the third grade, Traun had Natalie moved to Belmont-based Charles Armstrong School (CAS) for students with language-based learning differences.

Many kids do not receive such early intervention. Because dyslexia manifests itself differently in each student, individual learning differences may be missed. Although dyslexic students cannot make the typical symbol-sound relationship associated with reading, White says some “hide” their disability by “guessing” at words, using as clues pictures, overall subject matter, or even the way a word looks.

Some dyslexic students have “superb listening comprehension and vocabulary, as long as they don’t have to read,” White explains. They may be considered bright in preschool, and may be gifted in areas such as math, mechanics, art or sports. Later, their failure to read may be seen as laziness or lack of effort.

The Need for Early Intervention

While some dyslexic students squeak by using compensating strategies like those White describes, experts say that if left untreated, dyslexia can have serious emotional consequences.

Dr. Rosalie Whitlock, head of CAS, says, “When we get kids late, we have to spend a long time dealing with their self-esteem issues before they’re ready to assimilate more cognitive or content-related skills.”

San Francisco mother Kathy Carey says her daughter Lea’s learning issues took years to diagnose. Although Lea, now 13, was reading behind her peers at her independent girls’ school, neither teachers nor reading specialists detected the underlying problem. A $1,500 evaluation in first grade did not identify any serious issues. Teachers felt Lea would catch up.

During that time, says Carey, Lea’s self-esteem plummeted. Finally, when Lea was in sixth grade, a more comprehensive $3,500 evaluation showed that she was dyslexic.

Her confidence was the hardest thing,” says Carey. “In her brain, which is smart, she was saying, ‘I should be getting it and I’m not.’”

Besides lingering self-esteem challenges, Carey says Lea suffers from anxiety.

“She’ll immediately think she can’t do it and get so anxious that her brain shuts off,” Carey says.

The educational repercussions of untreated dyslexia can also be severe. The IDA cites research showing that kids with language difficulties who get appropriate instruction by first grade have fewer problems later than those who do not. Moreover, 74 percent of kids who are poor readers in third grade remain poor readers in ninth grade.

“The earlier you can get intervention started … the sooner you can get the child functioning at a regular level,” notes Whitlock.

Studies by Drs. Sally and Bennett Shaywitz at Yale University show that brains of dyslexic children fail to make certain connections in the language-processing region. Some researchers speculate that if intervention begins early enough, the brain can be “trained” to make some of those neural connections.

Christy Bonetti, regional director for Lindamood-Bell Learning Centers, says, “I really believe that if we can do early intervention, we can almost eliminate special education. We can teach the brain to learn things that it may not have been able to do before.”

Lindamood-Bell centers offer multi-sensory instruction, which specialists agree is most effective in addressing language-based learning problems. This method uses hearing, sight and touch to help link sounds with their written symbols.

For example, a teacher may write down a letter and pronounce it. Kids also say the letter, to sense how it feels in their mouths when spoken, and write it in the air or trace it on a page. Since dyslexic kids may have weak auditory or visual processing skills, this approach uses all three sensory pathways to reinforce the basic concepts of language.

Advocating for Your Child

If you suspect your child is dyslexic, seek a professional evaluation, says Ellen Gilbert, a San Francisco-based speech and language pathologist. Given the high cost of testing, Gilbert recommends that parents with limited resources contact organizations such as the Community Alliance for Special Education, which helps families navigate the Individual Education Plan (IEP) process in public schools.

The IEP process begins with a “Student Success Team” (SST) meeting of school officials and parents. The SST may then schedule a free evaluation for the child, and later draw up an IEP, listing educational goals and special accommodations.

Unfortunately, the IEP process can be slow, as limited funds mean some districts are in no rush to place kids into special programs. The IDA’s Northern California branch says California public schools typically wait until students are two grade levels behind their peers before taking steps toward remediation.

CAS’s Whitlock advises parents working through school districts to be persistent.

“Hang in there and say, ‘It’s really important. I need to get my kid tested and I don’t want to wait for a year.’ And if you can’t get it through the Special Ed department, try to get to the superintendent. If you do it enough, and do it loudly enough – but not obnoxiously – you’re going to get somebody to listen,” Gilbert says.

Parents should let districts know they are aware of their child’s legal right to a free assessment, under the Individuals with Disabilities Education Improvement Act. Parents can also seek lower-cost evaluations conducted by graduate students and supervised by faculty members at the speech and language clinics of many local universities.

Once an evaluation has determined a tutor is needed, persistent parents may be able to secure free tutoring through the IEP. Some private schools will fund a portion of tutoring fees – which can reach $70 per hour – for kids already receiving financial aid, and centers like Lindamood-Bell offer student loans.

The Good News

Despite the challenges, specialists say public understanding of dyslexia is growing.

“The good news is schools are becoming more tuned into the fact that this isn’t a developmental thing, that when there are certain signs, it’s important to inform parents early on,” Whitlock notes. “There’s a wonderful, heightened awareness.”

New technologies include spell-check programs, books on tape and voice recognition software. Moreover, schools are getting better at accommodating kids with learning differences, including allowing them to tape-record classes or use computers during exams. “LD” kids may also receive more time to complete standardized tests.

Local families can also benefit from the many Bay Area support groups. Since Traun helped establish the Parents Education Network (PEN) in San Francisco, PEN has opened an East Bay chapter and will start one in the Peninsula.

“Nothing has helped us more than other parents who, like us, were struggling to … find a way to navigate the road ahead,” notes Traun.

Parents should also take comfort in knowing they are not helpless. Laura Shifter, a former second-grade teacher in San Francisco who now works with LD kids, says her parents were central to her success in coping with dyslexia.

“Having teachers look out for you, having your parents advocate for you – that’s so crucial,” she says.

Shifter says her parents helped by reading the same books she read in school so they could discuss them with her. Similarly, Julie Traun helped her daughter by taking turns with her reading-out-loud sections of her history and English textbooks.

Shifter says the other key to her success was self-awareness.

“Once you learn what your strengths and weaknesses are, then you can really play on your strengths,” she adds.

Traun’s daughter Natalie learned what her strengths were during the three years she spent at CAS before returning to a traditional school in sixth grade – and she has used them well. Last June, she earned Drew College Preparatory School’s “Scholar of the Year” award, given to one freshman in good academic standing who has a positive attitude and helps others.

Natalie still meets with an on-campus tutor and receives individualized language instruction after school. Although she’ll never read as easily as her peers do, she says dyslexia has its blessings.

“It forces you to figure out how you learn and who you are … I don’t have to struggle with who I am. If I didn’t have dyslexia or any learning difference, I would not know as much about myself as I do now.”

Natalie’s mother concurs. “Parenting a kid with difficulties is really hard. It takes every bit of patience you have,” she says. “But I would now say I’m grateful that my daughter has educated … us. She’s changed our lives, by facing something so hard and coming to terms with it.”

Noelle Salmi is a freelance writer in San Francisco.