Imagine that you're in second-grade reading class, scared to death and praying that the teacher, who is randomly asking students to read from the textbook aloud, doesn't call your name. But it's too late. Your turn.
As all eyes are on you, your eyes are glued to the page of the open book in front of you. This is what you see: "That dab cat run form the wam." This is what you should see: "The bad cat ran from the man." Panic ensues.
Now imagine that you're the parent of that child. Your child is intelligent, but seems to lack an awareness of word sounds and structures, frequently mispronounces words, has trouble with reading comprehension or struggles to express thoughts verbally or in writing. You've heard about dyslexia -- a neurologically based, often genetic disorder that affects the acquisition and processing of language, which leads to learning difficulties in reading, writing, spelling and sometimes mathematics -- but you're just not sure if your child has it.
Maybe your child needs tutoring. Or glasses. Or perhaps it's only a phase. Whatever the situation may be, it's not wise to ignore it.
"Educators traditionally have been told that it's okay to wait until fourth or fifth grade to get concerned, because some children may be late bloomers when it comes to reading," says Sandy Schultz, president of the Wisconsin branch of the Baltimore-based International Dyslexia Association (IDA). But over the last 20 years, government-funded research on how children learn to read has shown that reading difficulty is often an early sign of dyslexia. And the IDA estimates that 85% of all people with reading disabilities are dyslexic. "Remediation before age 9 will more than likely result in a child who is a proficient reader," says Schultz. "The longer you wait, the harder it will be."
But what should a parent's first steps be?
The simplest definition of the word "dyslexia" comes from looking at its Greek roots: "dys" means "difficulty" and "lexia" means "language." Thus, dyslexia means trouble with anything from rhyming words to reversing letters, words and numbers. For example, dyslexics commonly confuse such letters as "d," "b," "p" and "g" with each other. Anatomical and brain-imagery studies also reveal differences in the way the brain of a dyslexic person develops and functions.
Given its broad definition and symptoms, misperceptions abound about dyslexia, and the exact causes of the condition remain unclear. "This is a very controversial area," says Nira Scherz-Busch, director of the Child and Family Psychological Services Clinic on Madison's west side, one of the few facilities in Dane County that diagnose dyslexia. Many educators are not trained to detect dyslexia, says Scherz-Busch, and because the condition is treated as a learning disability, dyslexics are often either placed in special-education classes that may not address their specific needs or left to struggle in silence if the school fails to identify them. "Schools are not looking at whether or not that child has a disability," Scherz-Busch says. "They're looking at whether or not that child qualifies for their special education programs."
Jack Jorgensen, executive director of the Madison Metropolitan School District's educational services department, admits as much. "Dyslexia is not identified, per se, as a disability under the Individuals with Disabilities Education Act," he says. But some problems identified as disabilities under the act may actually be caused by -- or at least related to -- dyslexia. (Even so, that doesn't mean that the schools' traditional special-ed programs will help the dyslexic.) The district does provide parents of suspected dyslexics with information about how to seek additional help, Jorgensen adds.
Experts suggest that a parent who thinks his or her child may have dyslexia call the school district's special education department and request to have that child tested for learning difficulties, which the school district is required to do by law if asked. If dyslexia is suspected, the next step should be to seek an official diagnosis and then, if necessary, remedial treatment.
A formal diagnosis of dyslexia can involve an expensive functional magnetic resonance imaging (fMRI) scan, which is similar to the process used to evaluate everything from headaches to torn knee ligaments. This procedure, which costs several thousand dollars, records a patient's thinking processes, allowing researchers and doctors to determine which parts of the brain are most active during specific cognitive tasks. This provides a map of an individual's neural circuitry and a window into how language is interpreted by that person. One advantage of the fMRI is that it provides scientific proof that an individual is dyslexic; it does not, however, suggest any sort of treatment.
Human diagnosis, on the other hand, does -- and it's a lot cheaper. Dyslexia can also be identified through a battery of standardized language tests, IQ tests and other oral and written tests suggested by the Association on Higher Education and Disability -- the course of action espoused by Scherz-Busch in lieu of fMRI scans. Even so, "there is no single test for dyslexia," she says, adding that she bases her testing methods on knowledge she gains by working with an individual. The entire process, including waiting for results, can take up to a month.
Among the treatments Scherz-Busch prescribes for young dyslexics are programs that teachers can implement in the classroom, special software to be used at home or tutoring sessions at the Madison 32nd Degree Masonic Learning Center for Children. The downtown center opened in 2001 and offers free services to dyslexic students in kindergarten through high school by using the popular and time-tested Orton-Gillingham teaching method. Students are tutored one-on-one at the center for 50 minutes twice a week after school, and graduates usually read at or above grade level.
The highly structured and systematic Orton-Gillingham method dates back to the 1930s. It uses phonetics and emphasizes visual, auditory and kinesthetic learning styles. Instruction begins by focusing on the structure of language, and then gradually moves toward reading. The program provides students with immediate feedback and a predictable sequence that integrates reading, writing and spelling.
While dyslexia may be the key reason why a child is struggling with reading, it may not be the only one. That's why some experts also recommend consulting a family doctor or pediatrician, who can refer patients to a credible optometrist. Ophthalmologists generally focus on the physical nature of the eye, but optometrists concentrate on the functional and mental processes involved in good vision. Some optometrists, while acknowledging that a patient might be dyslexic, may also diagnose an eyesight problem -- especially considering that the symptoms are similar -- and recommend vision therapy.
Vision therapy, a more controversial alternative to traditional dyslexia treatment, has a long history but has only recently begun to receive increased attention. It involves an individualized and supervised treatment program designed to correct visual-motor and perceptual-cognitive deficiencies. Vision therapy enhances the brain's ability to control eye alignment, eye focusing, eye movements and visual processing.
"For patients with problems with reading, it is important to understand that we are treating the vision problem with vision therapy, not teaching the child how to read," says Kellye Knueppel, an optometrist who runs the Vision Therapy Center in Brookfield and plans to open a new practice in Madison sometime this year. "We work to develop the visual skills that are necessary to read. Our job has little to do with reading; it has to do with getting eyes to work well." If vision is the only problem, the child will begin to be "very successful in school once the vision problem is out of the way," says Knueppel.
Even if it's overcome, dyslexia is never really out of the way. But the recurring condition is nothing to be ashamed of.
"Children, at a very young age, recognize how they're the same as their peers and how they're different," Sandy Schultz of IDA says. "Adults sometimes think that the less they talk about something or the more they hide something from a child, the better. But acknowledging dyslexia and saying, 'I realize this is hard for you,' comes as a relief to the child. It's never easy, but it's easier for the kids to cope knowing that they've got the support of someone who really believes in them."
Many professionals recommend the book Overcoming Dyslexia: A New and Complete Science-Based Program for Reading Problems at Any Level, by Sally Shaywitz (Knopf, 2003).
Child & Family Psychological Services Clinic (also oversees the Dane County Dyslexia Support Group, which meets once a month at Meriter Hospital)
Private day school with specialized and personalized instruction geared to children with learning disabilities including dyslexia.