Proving The Experts Wrong

(A version of this appeared on The Heart of The Matter on June 14, 2023.)

I like to go back and read the 25-page report.

The report is dated from the early 2000s and gives a medical history on my son and lists the tests the doctors administered. I’m barely a page into the report and my heart is already breaking. “The patient is still fairly young and needs intensive work in letter recall and reading. He’s experiencing problems with basic phonetic and decoding skills.”

When I get to this next part, I find that I always have to wipe away a tear. “He will have trouble reading Stop signs. He seems to be a strong listener, but he’ll never be able to enjoy a book, other than picture books, or function as a normal adult.”

If I close my eyes, I can still see the doctor sitting across the table emotionless and my wife and I feeling like we just had the life sucked out of us.

Finding the source

When our son was preschool-aged, we noticed that he had trouble recalling letters. We weren’t too worried. We figured that he was young and still had time, but when he got to kindergarten and then first grade, he didn’t get better. To add to the challenge, he complained about constant itching. He wore Under Amour shirts underneath his school uniform to help reduce the problem.

We took him to several different hospitals. The doctors feared the worst, everything from a brain tumor to cancer. They gave him tests and took blood samples, but they could find nothing wrong. Finally, we took him to Johns Hopkins Hospital in Baltimore. They pieced together the puzzle, figuring out that he was dyslexic. The itching was a simple sensory response to the challenges he was facing.

Diagnosing the problem

Dyslexia is a reading disability that affects the way students learn to read or interpret words or letters. It frequently includes difficulties in word recognition, spelling, and decoding, but does not affect general intelligence. Dyslexia impacts people differently, some dyslexics reverse letters, others have problems recognizing common sight words.

While grateful to John’s Hopkin in diagnosing the problem, we found that the doctor’s bedside manner left a lot to be desired. She gave us little hope for the future.

Turning the tide

We were frustrated, but we loved our son. Throughout the process to find out what was wrong, he never gave up. We certainly weren’t going to give up on him.

With the cause determined, we worked to get him the help he needed. We got him an Individual Education Plan (IEP) and increased help in school. We worked with him every night and, after a six-month wait, we were able to enroll him in a special program, called Orton Gillingham, that incorporated multi-sensory phonics techniques to help him with his reading and writing.

Other kids got to go out for travel soccer or baseball, my son spent his free time training his brain. He was tired after school, but he worked year-round for an hour or two each night. He soon started to see the benefits, his grades started improving and he started to read on his own. One of my happiest memories was the day he came home from school complaining about a small detail that he had read in one of the Harry Potter Books that had been left out of the movies.

His progress soon started coming in bunches. When he got to high school, he continued to challenge himself. His teachers didn’t always know what to do with him. On one hand, he had an IEP that touched on the dyslexia and his papers usually had a few misspellings, but on another he was taking on harder coursework and college prep classes that posed challenges for even the strongest of students.

He went on to graduate high school and complete his freshman year of college. He brought home A’s and B’s, but opted to take a break and set out on a different path. That was five years ago — in the years since he enlisted in the Armed Forces and plans to eventually return to college.

The letter I’ll never send

With everything I know now, I occasionally like to pull out that old report. When I do, a small part of me wants to write the Johns Hopkins doctor and give her a piece of my mind. I want to tell her how her heartless attitude stole our hope. I want to tell her how my son wrote his college essay on Matterhorn, a 600-page novel based on the Vietnam War, and now regularly reads wonky policy and philosophical books. I want to write and say “See what you missed! See where you were wrong!”

In the same breath, I want to write her and thank her for identifying the problem. Like anything, once we had a name, we were able to attack it.

In the end, I move on.

Instead, I read the report and then I look at how resilient my son has been and all the things that he has accomplished in his life. They return my faith in humanity.

We’re writing about resiliency this month on HoTM. What’s the word mean to you?