My Experience with Learning Disabilities

My life’s work has been in Christian education. But I am also a parent, and that’s what I’m writing about here.  I have three children, all redheads. I often joke that I am the patriarch of a ginger dynasty.  All three of my kids are really smart, but we’ve often thought of Kate as the smartest.  When Kate was 3 years old, she learned how to play a matching game that involved placing cards face down in columns and rows and flipping over cards 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 that she’d figured out some way to cheat, until we learned that she also has a near photographic memory for faces and the details of events and places we’ve visited.  I taught her to play chess when she was 5.  She played for a few weeks and then lost interest.  She picked up the game again nearly 6 years later, and to my surprise still remembered the rules.  When it came to children’s books, Kate memorized all her favorites.  She would know when I tried to alter the story or skip a page.  She could “read” 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. I could tell stories about Kate at length.

In 3rd grade we began to sense that something was wrong.  Kate began to do poorly on AR 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 2 or 3 grades above it, as her two older siblings had done.  At parent-teacher conferences, we expressed concern, but Kate was our third child and by then we were chill parents.  Kate was and is the kind of kid teachers loved – obedient, quiet, kind, respectful, cooperative, liked by her peers.  Teachers told us not to worry, and we followed their advice.  In fourth grade, the trend continued – low standardized test scores, reading comprehension problems, alternatively great and then terrible grades, depending on the kind of assignment or the style of test she took.  Picture books increasingly gave way to chapter books, and 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 4 months, and who then told us that everything seemed normal and that 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 that Kate might suffer from Attention Deficit Disorder.  I’d never noticed any attention deficit in Kate before, except when she was supposed to be reading, and neither had anyone else, and so that suggestion seemed to me like grasping at straws.

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 use her finger to follow words as she read and that she often skipped articles and prepositions and could not sound out words she did not know.  These are all things that 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 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 Baptist hymnal.  He mixed up the words and lines of the hymns so badly, that if God had judged his theology based on the lyrics he sang, he would surely have been guilty of damnable heresy!  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 his and my daughter’s ability to process language.  We talked to our pediatrician and at his recommendation we visited a developmental psychologist who tested Kate for a variety of learning disabilities.  He determined that she had an IQ of 125 (not a surprise) and that in his opinion, she exhibited no language processing deficits (a big surprise) because in his words, “she didn’t invert letters or numbers with any consistency,” as if that were the only or primary indicator of a language processing disability.  His determination was that Kate was “possibly” suffering from Attention Deficit Disorder and he suggested medication.  Well, when a guy with a Ph.D. in child psychology says it, it must be true.

Kate spent much of the 5th grade trying different brands and dosages of ADD medication.  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 that 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,” again, code for “we think she’s ADD.”  Kate continued to struggle with any assignment in any subject that had to do with reading.  Strangely, she was great at math as long as there were no word problems. She hated word problems.  She was also great at spelling when the tests involved recalling a simple sequence of letters, a colossally easy task for a kid with her memory skills.  But when the spelling assignments involved more complex skills like using words in a sentence, or differentiating homonyms, words that sound the same but have different meanings, Kate was as lost as a ball in high weeds.  She fell further and further behind her peers on reading comprehension and fluency scores.  But she still made mostly As in school, to her disservice I might add, and she continued to beat almost anyone at any game that involved memory or problem solving skills.  And so, the 5th grade passed and we continued to listen to teachers who assured us that Kate was fine, and that as far as they could tell, she was just a normal kid who needed more reading practice.

Just a few weeks into the 6th grade, Kate was failing every subject except math.  Adding insult to injury, we received the results of her ACT Aspire test that showed her in the bottom 25% nationally in multiple areas of academic progress.  Something just did not add up and my wife and I got serious about finding answers. We got scientific about things.  We had a hypothesis: that our daughter had a problem with the way her brain processed language, and we tested that hypothesis by collecting all the data we could and then seeking help from any expert who could help us interpret the data.  This led us by way of a network of contacts, to a Hoover based speech and language pathologist named Hettie Johnson.  After hours of extensive and expensive testing last fall, we got some answer.  One the bright side, we got confirmation that Kate had some unusual gifts: working memory – 95th percentile; cognitive problem-solving skills – 98th percentile; IQ – 98th percentile.  The IQ test is non-verbal and uses geometric shapes and items in a series to examine problem-solving abilities. The tester showed me some of the problems and asked me to solve them.  I got a few of them correct, but it took me several minutes to solve what 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 far more efficiently than mine.  It was as if I were talking to a genius.  But 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.  This remarkable combination of unusual gifts and striking deficits is called dyslexia.  For 10 years our school system missed it.  Skilled teachers, reading experts, and tutors missed it.  Pediatricians and a developmental psychologist missed it.  Kate’s own Ph.D. dad and nurse mom missed it.  I felt horrible, terrible, guilty about all the times I’d simply written her problems off as insignificant, or the result of ADD, or laziness, the times I’d told her simply to work harder, or coerced her to read more and more, and told her to pay attention, as if a blind person could learn to see with better concentration.

Dyslexia is an inefficiency in the way the brain processes language that expresses itself in any combination of 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, difficulty finding the correct word to express a thought, and all of these inefficiencies typically show up most clearly when one is reading.  Speaking comes naturally and is learned on an unconscious level. Babies learn to speak on instinct.  Biologists suggest that speaking is a very ancient skill, built into our evolutionary inheritance, perhaps millions of years ago.  Our brains handle speaking quite 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, like traveling from Birmingham to Atlanta on I20.  For the dyslexic, however, the pathways used for reading are far more complex, and therefore less efficient, like driving from Birmingham to Atlanta on backcountry roads, slowly taking the scenic route.  Sure, you take in the sights and sounds of the rural south 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.

If you use an fMRI (functional magnetic resonance imaging) to examine the brain of a normal person while reading, you’ll see just a few areas of the brain modestly at work.  If you examine a dyslexic reader’s brain in an MRI, you’ll see the brain lit up like New York City at Christmas time, with multiple areas of the brain working at cognitive load capacity.  This explains why dyslexics find reading so arduous, and why they take frequent breaks while reading – the brain is working overtime to get to the meaning.  Dyslexics, like my daughter, develop skills rather unconsciously to cope with the inefficiency.  They learn to memorize things very quickly, they learn to problem solve spatially, mathematically, and non-verbally.  And sometimes they learn to smile, cooperate, say, “yes ma’am” and pull the wool over teachers’ eyes for years to get good grades and get by.  And Kate played the game so well she fooled everyone, including me, until 6th grade.  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 her 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 and who specialized in the Orton Gillingham approach to dyslexia therapy. Since coming to SouthLake Christian Academy a year ago, Kate has thrived. She was re-tested by Dr. Jill Gottlieb who confirmed her earlier diagnosis and gave us good guidance about accommodations. She sees a National Institute of Learning Disabilities certified teacher in SLCA’s Academic Development Center twice each week. She has educational plan of action (EPA) that provides the accommodations she needs to learn effectively.  She has a support system in place now that we would never have dreamed possible in the public schools she attended.  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 the truth is that earlier diagnosis would have been much better.  A dyslexia diagnosis can be made as early as age 6, there are warning signs that appear earlier, and outcomes are better the earlier the intervention.  The truth is, I am well educated and I have resources to get Kate help.  But what about other children, in other schools, who lack the knowledge and networks and know-how and resources to get help?  By some estimates, nearly 20% of children worldwide suffer from dyslexia. In prison populations, that number more than doubles to 48%. What hope do under-resourced students have to get the help they need?

I am an educator at a Christian school, so I spend a fair amount of time talking about Jesus.  Like Jesus, teachers touch lives every day that they go to work in ways that they will never fully comprehend and society will never adequately value.  They have a tough job, and honestly, students with learning disabilities make their job even more challenging.  Compounding the difficulty, I believe that generations of teachers have received inadequate instruction in recognizing and understanding learning disabilities.  I think that is changing across the country as it has at SouthLake Christian Academy.  I believe that it must change, not so much for Kate as for children around the country who are far less likely to get the help they need.  When teachers help a student with a learning disability, they demonstrate the love of Jesus to the least of these. Teaching a child to read is not just educational work; it is Kingdom of God work.  If I might paraphrase from Victor Hugo’s novel Les Miserable, “To teach another person is to see the face of God.”

Academics Dyslexia Learning Disabilities Uncategorized