October is Dyslexia Awareness Month
An 85085 family tells their story about the battle with their disorder
By Jill Jones
My son, Clark, was a “typically developing” child. He learned to talk and walk normally and really enjoyed building things. When he was 4, Clark got his first preschool homework assignment—copying the letters of the alphabet.
After struggling with it for a while, he finally just scribbled on the paper in frustration. I said to him, “OK, let’s take a step back and just sing the ABC song.” But he could not sing past the first few letters. Even after working with him for several weeks, Clark could not seem to remember the letters of the alphabet in sequence. That’s when my husband said, “I think he has dyslexia.”
Dyslexia is a specific learning disability related to phonological processing, making it hard to learn to read and spell. It is also far more common than most people realize. As many as 1 in 5 children have dyslexia—that’s more than kids with asthma or food allergies. October is Dyslexia Awareness Month.
Dyslexia is a neurological condition, but for which the treatment is educational, making diagnosis and intervention very complicated. Unfortunately, most children with dyslexia are never diagnosed or aren’t diagnosed until third or fourth grade when their reading difficulties become overwhelming.
Our son’s dyslexia was recognized at a very early age because we knew the warning signs. My husband, Kris, has struggled with dyslexia his whole life. We also knew that dyslexia is genetic and likely to be passed down from parent to child. When we suspected that our child had a learning disability, we reached out to our neighborhood school (where our daughter also attended) for support. Unfortunately, that’s where we, and so many other families struggling with dyslexia, hit a brick wall.
When we first met with the school to see about getting Clark into developmental preschool, they evaluated him and determined he was “not behind his peers” and did not qualify. So, we did the best we could to prepare him for kindergarten. But it came as no surprise that within a few weeks of starting school, Clark’s teacher reached out to discuss his attention and behavior issues. We again voiced our concerns that he likely had a learning disability, but the school insisted that he would just start to “get it” after winter break. We knew that Clark’s situation was far more serious, so we got a full neuropsychological evaluation that would tell us exactly what we’re dealing with.
Clark was diagnosed with severe dyslexia (difficulty reading), dysgraphia (difficulty writing), dyspraxia (difficulty with coordination and directionality), and ADHD. He was also identified as gifted, with a “superior” IQ and a visual-spatial index in the 99.9th percentile. This vast discrepancy between high and low test scores is a hallmark for dyslexia. Unfortunately, so is the “wait to fail” mentality of the school system. Despite having an official dyslexia diagnosis and the fact that Clark’s reading scores were far below the expected range, the school again denied special education services, saying that he was “progressing well enough.”
Distraught by the little progress he was making in school, we turned to the only other option available for families struggling with dyslexia—paying for private tutoring. During the summer months when most kids are taking a break from school, Clark went three hours a day, five days a week to the Wellington Alexander Center in Scottsdale for intensive dyslexia intervention. There, in a one-on-one environment with trained speech/language therapists, Clark learned the basic building blocks of words (phonemes) and how to manipulate them by blending (reading) and segmenting (spelling) simple syllables. Only after he learned the individual phonemes was he introduced to the letter representations for those sounds. After 10 weeks and 120 hours of therapy, Clark went from not even knowing all the letters of the alphabet to finally being able to read. What was even more amazing was that instead of complaining about having to go to “summer school,” Clark lit up inside and had more confidence than we’d ever seen.
Clark started first grade with improved (although still below average) reading skills and new-found confidence. But sadly, after a few short months, the light faded, and he sank into frustration and depression. When he went to school in the morning, Clark was the bright and happy soul we knew him to be, but when he came home, he was like a different child—quiet, withdrawn, and unable to communicate his feelings. We spoke often with his teacher, who was understanding and accommodating. But there’s only so much she could do to help Clark with 25 other kids in her class. So, we urged the school again to provide adequate support for his learning disability. Two years after we initially reached out to them, the school finally granted him special education services, as well as support from the reading specialist, speech therapist and occupational therapist.
As many families in similar situations can attest, the school system can be very difficult to work with and often resistant to acknowledging or providing support for dyslexia. Due to a lack of understanding about dyslexia and/or an unwillingness to accept responsibility for treating it, it seems that schools often adopt a philosophy of delay or outright denial, leaving families frustrated and forced to seek other solutions, such as private or homeschool.
Whether they want to admit it or not, the fact is that 15% to 20% of a school’s student population has dyslexia or a similar reading disorder. Although schools have reading specialists and programs to support struggling readers, it is often delivered in a group setting, for too few minutes to be effective, and often utilizing methods that do not address a dyslexic student’s core deficits. It’s no wonder that more than half of Arizona third graders didn’t pass the AZ Merit reading test in 2019.
Clark is now in second grade and although he receives much more support from the school, we still supplement with outside tutoring and will likely do so for many years to come. But many families cannot afford expensive evaluations or tutors and must rely on the public-school system to identify and address reading disorders. That is why Clark and I went to the state legislature this past spring, along with dozens of other families and specialists, to advocate for a new law requiring public schools to conduct dyslexia screening and teacher training. The bill passed with unanimous support and these measures will take effect in the 2020-2021 school year.
Dyslexia is a lifelong condition that not only affects an individual’s ability to learn but his/her self-esteem and future career prospects, as well. In fact, studies indicate that as many as half of prison inmates have dyslexia.
With how prevalent dyslexia is and how poorly it is handled by schools, training and screening is a great first step. But that’s not enough. More must be done to improve how children are taught to read, such as adopting a curriculum of phonics-based structured literacy for kindergarten to second grades. The teaching methods that are best for dyslexic children are best for all children, and all children deserve to be given the proper tools to learn and succeed.