Dyslexia: What You Don’t Know Can Hurt You

 

Dear SC House of Representatives K-12 Subcommittee,

I am a pediatrician practicing in York County, SC, and I do not have a child struggling with dyslexia. I have hundreds of them.

Unfortunately, very few of them know it.

Our goal as pediatricians is to help families help their children to be emotionally and physically healthy. Every day, we talk with parents, grandparents, and children about healthy eating, motor development, language and cognitive development, safety, dental care, sleep, mental health issues, behavior, and successes and challenges at school. Just as a child’s cognitive and motor development impact success at school, school success affects a child’s emotional and physical health.

Each day that I work, I see many children for “attention deficit hyperactivity disorder” and other behavior or emotional health issues. I currently follow hundreds of children in our school district who take controlled substances to help with their behavior and attention or who take other medications for anxiety or depression.

Data and statistics tell me that I should also be following hundreds of patients with dyslexia—somewhere between 10-20% of the patients I see.

But somehow I only have a few in my entire practice who have been recognized and properly diagnosed, most through private testing. Even fewer are receiving appropriate evidence-based intervention for their difficulties in processing written language.

Instead, I have family after family shedding tears of frustration in my exam room because despite a course of “Reading Recovery” in first grade, nightly reading at home, and way too much time spent on homework, their child is still struggling to succeed in school. Parents resort to yelling at children and children yell back during homework time. Teachers can’t understand why a child won’t start work independently at school and why in class assignments often remain undone. A child who appears to read fluently may struggle with comprehension about what has just been read. Stress levels are high for the parent, the teacher, and the child.

Many of these children have labeled themselves as “stupid” when really, they have an easily recognizable brain processing disorder called “dyslexia.”

Over the years, many parents have told me that when they have asked whether their child might have dyslexia, they are told “no” or “that is a medical diagnosis. Ask your doctor.” To be clear: a diagnosis of dyslexia can be made through cognitive testing done by psychologists or reading specialists in the school district. It can not be made in a primary care medical office. Private testing for dyslexia and other learning disabilities runs between $2000 and $3000 and is not covered by any insurance plans.

SC public schools appear to use the term “reading disability” when referring to a child with a language based disability. This vague term has no associated evidence-based interventions. On the other hand, the term “Dyslexia” is associated with research-based interventions and expectations that can help a child throughout his or her educational journey.

Please help the children of our state who are struggling with dyslexia to realize that they are not stupid. They have a diagnosis. There are evidence-based interventions which are currently not made available to those who need them most. These programs help not just those struggling with dyslexia, but ALL children. We need better processes for universal early screening, diagnosis, and intervention as soon as possible. Proper diagnosis and treatment will save emotional stress and frustration for families, teachers, and students.  In addition, our state should see a significant return on investment in early identification and treatment of dyslexia:  we can reduce the cost of care for behavioral health diagnoses, and higher graduation and literacy rates will insure a more attractive business environment for South Carolina.

Sincerely,

Martha M. Edwards, MD

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2 thoughts on “Dyslexia: What You Don’t Know Can Hurt You

  1. From the parent of a child with dyslexia, diagnosed by a psychologist, this is spot on. I had to beg for school testing in 2nd grade, AFTER holding my child back for a year because I could tell he was not reading well. His teachers tried to reassure me that he would be fine – “boys just don’t pick it up as quickly as girls”. Once tested we were told he had a reading disorder, but they couldn’t label it as dyslexia. After reaching middle school we spent over $2000 and received a diagnosis of dyslexia and at this point ADHD. Self confidence levels were extremely low, frustrations very high, family life chaotic especially trying to get homework done – tears daily on school days (from both of us). We were fortunate in that we could afford to get assistance from doctors and counselors, but there was no coverage for those visits. I imagine many families just try and cope. Difficult situation and very misunderstood until you live it.

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  2. Sooooo true Amy! And thanks Dr. Edwards for your posts!! You need to get this message out pronto! Our daughter went through similar situation in the Catawba County, NC public school system and they were NO help, not even an IEP when they knew she had an 3 LDs plus inattentive ADHD, because we had her tested outside of the system with one of their approved places, Charlotte Behavorial’s Dr. Melanie Powell, who btw is awesome. We ended up making the drastic decision to put her in The John Crosland School which is a college prep K-12 private awesome school specifically for LD and Adhd medically diagnosed students in Charlotte (formally Dore Academy in Myers Park). I highly recommend them!!! She entered there in the fourth grade all beaten down and hopeless because of what the public school had put her through, to become a wonderful, happy student who was taught to understand her LD and how to advocate for herself and was offered appropriate accomodations, to successfully graduated there in 2015!!! Expensive, yes, but there are scholarships to get half off, and then we were able to pay monthly pmts and cash flow it. Plus you can deduct off taxes on your schedule A’s medical expenses since it is a special school and she was medically diagnosed, So, It was worth every single cent and sacrifice we had to make. She is so happy and confident and now attends a similar 4 year accredited college specificially for LD/ADHD students in Leesburg, Florida as a sophomore making A’s and B+’s. 🙂

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