My life’s work has been in education, but I am also the father of three. All of my children are remarkably intelligent, but our family typically thinks of Kate as the smartest. When Kate was three years old, she learned how to play a matching game that involved placing cards face down in columns and flipping them over, two per turn, until you make a match. The person with the most matched pairs wins. To this day, nobody in our family has ever beaten Kate. We thought for a while she had figured out a way to cheat, until we learned she has a near photographic memory for shapes, faces, events, and places we have visited. I taught her to play chess when she was five years old. She played for a few weeks and then lost interest. She picked up the game again nearly six years later, and to my surprise still remembered the rules. When it came to children’s books, Kate memorized all her favorites. She knew when I tried to alter the story or skip a page. She could recite the story to me if I let her, and she knew from the pictures when to turn the page long before she could actually read.
In third grade we began to sense something was wrong. Kate did poorly on reading quizzes. She started to lag behind her classmates on standardized tests. She was barely reading at grade level while many of her friends were reading two or three grades above it, as her two older siblings had. At parent-teacher conferences we expressed concern, but Kate was our third child and by then we were more relaxed as parents. Kate was the kind of kid teachers loved – obedient, quiet, respectful, cooperative, and liked by her peers. Teachers told us not to worry, and we followed their advice. In fourth grade, the trend continued with low standardized test scores, reading comprehension problems, alternatively good and then terrible grades, depending on the kind of assignment or the style of test she took. As picture books gave way to chapter books Kate’s love for reading evaporated. It was a chore to get her to complete book assignments and she often seemed to daydream when she was supposed to be reading. The school had a special program for students with reading difficulties. She entered and then completed that program, but we noticed no improvements. We hired a reading specialist who worked with Kate two afternoons a week for about four months, after which the teacher told us everything seemed normal and Kate was just “a laid-back kid,” which I suspected was code for a student who is not motivated. Her fourth-grade teacher was the first, but not the last, to suggest Kate might suffer from Attention Deficit Disorder. I had never noticed any attention deficit in Kate except when she was supposed to be reading, and neither had anyone else. While the suggestion seemed implausible, I had no alternative explanation.
One day around this time Kate was trying to read a schoolbook to my dad, who himself cannot read out loud with any fluency because of his own learning disabilities. My dad noticed that Kate tended to skip articles and prepositions and could not sound out words she did not know. These are all things I knew about Kate, but my dad commented that he did the same things still. I was familiar with my dad’s story. He did terribly in school and was told by his high-school counselor that he “wasn’t college material.” My dad graduated with a biology degree from the University of Georgia and went on to have a brilliant career in the energy business, teaching safety and environmental responsibility to multi-national companies drilling for oil offshore around the world. Incongruously, I have distinct memories of standing next to my dad in church as he tried to sing from the hymnal. He mixed up the words and lines of the hymns so badly it became something of a family joke. It never occurred to me to ask why a highly intelligent and accomplished biologist, businessman, and environmental advocate did so badly in school, could not sing from a hymnal, and had read fewer than a dozen books in his life. But when my dad saw himself in my daughter, I began to suspect that something more complex was going on with my daughter’s ability to process language. We talked to our pediatrician and at his recommendation visited a developmental psychologist who tested Kate for a variety of learning disabilities. He determined that she had an IQ of 125 and in his opinion, she exhibited no language processing deficits because, in his words, “she didn’t invert letters or numbers with any consistency,” as if this were the primary indicator of a language processing disability. His determination was that Kate was “possibly” suffering from Attention Deficit Disorder and he suggested medication.
We accepted the psychologist’s diagnosis and tried several different brands and dosages of ADD medication over a period of months. The stimulant effect kept her awake at night, suppressed her appetite, and made her moody and aggressive. We would have been willing to tolerate those side effects, except for the fact the medication had no impact whatsoever on her academic performance. Parent-teacher conferences were again predictable. “Kate is such a sweet child, she just needs to work harder on reading and try not to daydream so much.” She continued to struggle with any assignment that had to do with reading. She was great at math as long as there were no word problems, which she hated with a passion. She was also great at spelling when the tests involved recalling a simple sequence of letters, but when assignments involved more complex skills like differentiating homonyms, Kate was completely lost. She fell further and further behind her peers on standardized tests, but still finished the year with good grades, much to her disservice.
A few weeks into the sixth grade, Kate was failing every subject except math. Adding insult to injury, we received the results of two different standardized tests showing her in the bottom 25% nationally in multiple areas of academic progress. Something just did not add up, so my wife finally got serious about finding answers. By way of a network of contacts, we found a speech and language pathologist who conducted hours of extensive and expensive testing. We learned that Kate had some unusual gifts: her working memory was in the 95th percentile; cognitive problem-solving skills in the 98th percentile; IQ in the 98th percentile. The IQ test was non-verbal and the tester showed me some of the problems and asked me to solve them. It took me several minutes to solve problems my daughter solved in just a few seconds. When the tester asked Kate to explain to me how she came up with the correct answers, I realized that her brain was working on an entirely different level than mine. And yet at the same time, the tests showed the source of Kate’s struggle: language comprehension 23rd percentile; phonetic decoding efficiency 23rd percentile; reading accuracy 5th percentile; reading fluency 9th percentile; reading comprehension 5th percentile. I learned that this remarkable combination of unusual gifts and striking deficits is typically called dyslexia. For ten years our public school system missed it. Skilled teachers, reading experts, and tutors missed it. Pediatricians and a developmental psychologist missed it. Kate’s own highly educated parents missed it. We felt horribly guilty about all the times we had written off her problems as insignificant, simply told her to work harder, coerced her to read more and more, and given her meds she did not need.
We learned that dyslexia, now commonly called Developmental Reading Disorder, is an inefficiency in the way the brain processes language that expresses itself in dozens of ways, including an age delay in speaking, difficulties with pronunciation, struggles connecting letters to the sounds they make, problems sounding out words, struggles expressing one’s thoughts in writing, spelling problems, speech that is not fluent, pausing or hesitating often when speaking, or difficulty finding the correct word to express a thought. Many of these inefficiencies show up most clearly when one is reading. Speaking comes naturally and is learned on an unconscious level. Babies learn to speak instinctually. Biologists suggest that speaking is a very ancient skill, built into our evolutionary inheritance, perhaps millions of years ago. Our brains handle speaking rather easily and efficiently. Reading, however, is a much more complex task and must be learned consciously and methodically. Anyone who has ever tried to teach a child to read knows that it takes time, patience, practice, and very specialized skills that take years to develop fully. In most people, the neural pathways utilized for reading develop efficiencies over time that allow us to hear, recognize, and make sense of words on a page with increasing speed. For the dyslexic, however, the pathways used for reading are far more complex, and therefore less efficient, like driving from one city to another on backcountry roads, slowly taking the scenic route. Sure, you take in the sights and sounds of the countryside one traffic light at a time, but it takes much longer to reach your destination. When you get there, you may very well be better for it, unless of course you are being timed and graded on how fast you get there.
Examining the brain of a normal person using an fMRI (functional magnetic resonance imaging), you will see a few areas of the brain modestly at work during reading tasks. By contrast, if you examine a dyslexic reader’s brain in an fMRI, you’ll see multiple areas of the brain lit up and working at cognitive load capacity. This is why dyslexics find reading arduous and why they take frequent breaks while reading. The brain is working overtime to find meaning in the words. Students with reading differences develop skills rather unconsciously to cope with the inefficiency. They learn to memorize things very quickly and to solve problems spatially, mathematically, and non-verbally. And sometimes they learn to smile, cooperate, act respectfully, and fool their teachers for years to get good grades. Our speech pathologist calls Kate’s learning difference “Stealth Dyslexia” – a condition characterized by highly developed coping mechanisms that mask significant deficits and make diagnosis extremely difficult. She tried to comfort us by listing all of the famous people, artists, inventors, entrepreneurs, and movie starts with dyslexia. None of this made me feel a bit better. The truth is, I missed it. Wanting to believe she was ok, I ignored obvious signs when I could have helped her sooner.
After diagnosis, my daughter began to get the help she needed. She got an education plan that granted her testing, homework, and note-taking accommodations at school. She was given extended time to take tests. She saw a tutor twice a week (at considerable expense) who was a Certified Educational Therapist specializing in the Orton-Gillingham approach to reading instruction. When we relocated to North Carolina, Kate began to meet twice weekly with a National Institute of Learning Disabilities (NILD) certified teacher in our school’s Academic Development Center. She now receives the instruction and accommodations she needs to learn effectively. She has a support system in place we would never have dreamed possible in her earlier years of school. Kate is now on a better road to success, one that recognizes her gifts and gives her a chance to thrive in spite of her reading inefficiencies. But truthfully, earlier diagnosis would have been much better. A dyslexia diagnosis can be made as early as age six and there are warning signs that appear earlier. Outcomes are better the earlier the intervention. I am blessed now to have resources to get Kate help. But what about other children in other schools who lack the knowledge, networks, and know-how to get help? By some estimates, nearly 20% of children worldwide suffer from dyslexia. In prison populations, that number soars to an estimated 48%.
As an educator, I am blessed to see teachers touch lives every day in ways our society will never adequately value. I am grateful for them beyond words. They have difficult jobs, and honestly, students with learning differences make their jobs even more challenging. Compounding the difficulty, generations of teachers have received inadequate instruction in the area of learning differences. University education programs typically devote little time to the subject, and as a result, most classroom teachers report feeling unprepared to help students with even moderate language processing deficits. Robust diagnostic resources remain difficult to access in much of the country so many students still go undiagnosed or misdiagnosed. With reported high rates of dyslexia in the prison population, one cannot help wonder what role learning disabilities play in the so-called school to prison pipeline. We must do more to prepare and equip teachers to recognize learning disabilities. We must provide families with resources needed to get specialized help. And we must never overlook the unique contribution neuro-atypical students make to our learning communities. My daughter is a daily reminder to me that remarkable talents accompany the challenges of dyslexia.
Matthew Kerlin 