I like to go back and read the 25-page report.
It’s written in a medical, matter of fact tone. Large sections of the report are highlighted and my wife has written comments in pencil on several of the report pages. I read it over-and-over again and I remember the intense fear and worry we shared.
The report gives a full medical history, lists the tests the doctors gave and how my son fared, who was present, and finally a summary and recommendations. I’m barely a page or two into the report and my head starts pounding.
“(My son’s name) is still fairly young and so, needs intensive work in reading. He needs to be taught the basics, phonetics, and decoding skills.”
When I get to this next part, my reading slows. I pause after every couple of words to take them in and ponder their meaning in my mind. They pack a powerful punch.
“However, we are not very optimistic about his ever acquiring these skills. The time will quickly come when we need to focus on circumventing the lack of decoding skills. He most likely will do better at sight word recognition and working to expand this skill. Also, he will need to begin using technology to essentially read and write for him.”
My breathing is deeper now. If I close my eyes, I can remember the doctor’s face when she handed us her preliminary report at the end of our visit.
“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 maybe a picture book, or function as a normal adult.”
Finding the source
When my son was in preschool, we first noticed that he had trouble remembering his letters. Nothing too worrisome, just something we wanted to keep watch. 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, he seemed to get worse.
To add to his problems, he complained incessantly about a number of sensory issues, including near constant itching. He wore Under Amour shirts underneath his school uniform before they were “the in-thing” to help reduce the problem.
We took him to a host of different hospitals. We, along with the doctors, feared the worst, everything from a brain tumor to cancer. They tested him for everything and seemed to take a blood sample every chance they could get, but they could find nothing wrong. Finally we took him on a friend’s suggestion to The Johns Hopkins Hospital in Baltimore.
They pieced the two things together, his poor reading and his itching. He was dyslexic. The itching was a simple sensory response to the challenges he was facing.
The diagnosis
In short, dyslexia is a lifelong reading disability that affects the way students learn to read or interpret words, letters, and other symbols. It frequently includes difficulties in word recognition, spelling, and decoding, but does not affect general intelligence.
Dyslexia impacts people differently, so symptoms may differ from person to person. Some dyslexics reverse letters, others have problems recognizing common sight words.
While grateful to John’s Hopkin in helping diagnose him, we found the doctor who saw our son troubling. Her bedside manner left a lot to be desired. She gave us little hope for the future.
At the end of our appointment, I even commented that she painted a bleak picture. She never heard us, she was off to the next appointment, the next whatever.
Now the work begins
We were taken back, but we loved our son. Throughout the long process to find what was wrong, he never gave up. We certainly weren’t going to give up on him.
With the cause determined — something we had suspected on our own and even asked about in previous doctor appointments — we were finally able to get him the help he needed. We got him an Individual Education Plan (IEP) and increased help in his school. We worked with him constantly and got him on a waiting list for a local reading program that used the Orton Gillingham approach to help challenged readers. Finally after about a six-month wait, we were able to enroll him in the evening tutoring program that worked individually with him on his reading and writing.
Other kids got to go out for travel soccer or baseball, my son, however, spent countless evenings putting in the time to retrain his brain. He was tired after having school all day, but he worked year-round for an hour or two each night
Soon enough, he started to see the benefits. His grades started improving. He started to actually read on his own. One of the happiest days of my parenting life was the day he came up to me, complaining about some small element from the fifth Harry Potter Book, Harry Potter & The Order of the Phoenix, that had been left out of the movie.
Some of his improvements were small at first, but then they started coming in bunches. He started walking with new confidence, a new believe in himself.
Funny how life works
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 a report that talked about his learning past, but on another he was taking on increasingly harder coursework that posed problems for even the smartest of students.
In particular, he took two AP classes last year and got 4s on both tests, earning himself college credit and took two more this year. The boy who couldn’t read or write, now reads at college level. It gets better. The boy who supposedly would need help reading simple streets signs will be starting college this fall.
A funny side note. Of all the books, apps and games my son could’ve downloaded, to make his senior class trip go faster, he chose Plato’s Republic. I nearly spit out my coffee when my wife told me that he wanted “some light reading” for the trip.
I’m proud of my son. He earned everything that’s been given to him.
The letter I’ll never send
So, when he went online and accepted his college acceptance letter two months ago, I pulled out a copy of the old report. I must admit that a small part of me, a very mean vile part of me, “googled” the primary doctor we dealt with at Johns Hopkins to see if she was still working and thought for a second about writing her and giving her a piece of my mind.
I wanted to tell her how her words took our hope. I wanted too to tell her how my son just finished reading Matterhorn, a 600-page behemoth of a novel based on the Vietnam War, put it down and picked up a wonky policy book on the challenges of finding peace in the Middle East. I wanted to send her both books and say “See what he can do. See where you messed up. See where you were wrong.”
In the same breath, I wanted to write her and thank her for identifying the problem all so long ago. Like anything, once we had a name, we were able to attack it.
In the end, I decided to write nothing, no letters, no emails. Instead, I read the report one more time and then I looked at my son’s resume and all the things that he’s accomplished. I like to read both from time-to-time because they return my faith in humanity and what anyone can accomplish if they put their mind to it.
They remind me too that miracles still happen, you just need to look for them and be willing to roll-up your sleeves.
Writing from the Heart with Brian 