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?
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Please join in on the discussion on the HoTM site. In addition, please visit my personal blog at www.writingfromtheheartwithbrian.com to read more or follow me on Instagram at @writingfromtheheartwithbrian.
All the best, Brian.
Images by Pexels.
The Heart of the Matter 
Thank you for this post, Brian. I know many, many parents who will be able to relate to it. I’ve always thought of the diagnostic process as “input only”. Pieces of info to factor into the overall picture of who are children are…not to define to but to help the learner (especially) understand any unique approaches or adjustments that may be beneficial. Work-arounds…ways to honor the fact that every brain works a little differently. The ‘stealing hope’ you described? I’m so sorry your family experienced that…but grateful for the sharing you’ve done about all of your son’s accomplishments, defining resilience, I’d say! 😊
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I walk a fine line with this post. I don’t want to really knock the doctor, there’s good and bad in every profession. My biggest problem with her was the black and white way she foretold the future. There was no wiggle room. He will have issues with Stop Signs, that was it. We’ve always wondered if she mixed something up with the report. But either way, glad that it worked out for my son. Thanks for commenting Vicki!
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“In the end, I move on” . . . Amen Brian!
Reliving past hurts stifles today’s joys. Forgetting the pain of the past may not be humanly possible, but we can choose not to remember, learn from them, forgive, and move to enjoy the present, free from resentment.
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Yes, you said it better than me Fred. I don’t want to forget it, because I love how my son persevered, but I certainly have chosen not to look back with anger and regret. It’s been better for me to move on . . . to what I can impact. Thanks for commenting. 🙂 🙂 🙂
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I was given a similar report about my middle child. She would not function in school, they told me. I said thank you, then we worked together to get her through school. She graduated college, works at a local University and is mother to two children. Her PhD husband, by the way, was given similar advice as a child.
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Oh, that’s a wonderful story VJ. I don’t know what the future holds for my son, but one thing I know, I wouldn’t bet against him. He just thinks differently that sometimes runs counter to the rigid read right to left, capitalize the first word in a sentence, i before e, world that we live in. But he’ll achieve whatever he puts his mind to doing.
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That’s one thing technology gives us reprieve from – the rigidity of grammar. Sounds like he has the right parent to champion him.
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🙂 🙂 🙂
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Oh Brian, what a thing for a professional to write, and passing judgement without ever exploring what your son and you might be able to accomplish. I would feel all those mixed feelings that you do when you look at that report. Congratulations to all of you for finding the right path to give your son a great start and encourage his love of learning. Never giving up on him or the belief that he could succeed was huge and so needed.
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Yes, it was a very cold statement. We’ve often wondered what happened. He wasn’t the first dyslexic to walk through their office. It seemed like such an unprofessional thing to write. If we had our wits about us, we probably would come back with a harsher in the moment response, but we were so shocked. We’re just glad it worked out for our son. If there’s any credit or congratulations, it’s all been him. He’s the one who’s put in all the effort.
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This was so heartening, Brian, and it’s great to hear that your son is thriving in the world! It breaks my heart to imagine how many parents have given up because a doctor’s dismissiveness or grim outlook, and how many kids suffer for it. They really should aim for realism – convey the likely challenges, but also the possibility of miraculous results with due diligence.
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I think she was trying to convey the realistic road ahead. I think, but I don’t know. It was such a harsh way of phrasing things. And, I’ve written this a couple places, there’s good and bad medical professionals. I hope I don’t paint them all in one color. We just expected the doctor to be more professional. Whatever . . . we’ve long moved on. Thanks for commenting Erin.
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Boy can I relate… Too many examples to list here.
Thank you for sharing your story. I will make a note to touch on this on my own blog when I’m done redesigning it. It’s currently under construction and I have a personal family matter to deal with so that may not happen for a number of weeks. But this is an important topic to discuss, one that touches many of us.
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I’m glad it made sense. Yes, looking forward to your response. Like anything, there’s good and bad doctors and educators out there. I’m just glad we were able to push past that moment and my son was able to get the help that he needed. It taught me a lot about being an advocate for your family.
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High praise to the good and undaunted parents and their courageous son
The medical professionals have their challenges. Some create distance from emotion that would disable their ability to serve. If one lives long enough, one meets them. You were not defeated and transformed the dispirating message you received. Bravo!
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There’s good and bad. I’m just glad that my son didn’t let it beat him, but rose above the situation. I hope I face my challenges with the same level of grace and perseverance!
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What a beautifully written and heartfelt post. The thing about parenting is that you never know what you’re going to get. I hear you about writing a letter. Maybe you should write it. But you never have to send it. I’ve done that many times in my life and it’s brought me peace.
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Thanks Rhonda, I appreciate that so much. You’re right about parenting. You spend so much of your time in the present, that you don’t always have a chance to look further out and see what’s coming. That’s why that report hit us so hard, to see the future spelled out in black and white, it was scary, but it didn’t take the entire situation into consideration. And yes, I’ve written a few “do not send” letters in the past, they’ve been helping vent some steam. I find it to be therapeutic! Thanks for commenting.
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I can’t imagine the pain you and your wife went through with such an unfeeling, insensitive doctor. I noticed in third and fourth grade, my daughter was having difficulty reading. My son was an avid reader and she never picked up a book. Her teacher brought it up to me that when she’d read aloud, her reading wasn’t where it should be. I took her to be tested at the public school and she was diagnosed with Scotopic Sensitivity Syndrome. She had a sensitivity to fluorescent lights, white paper and needed tinted glasses.
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Wow, that’s an amazing story EA. Glad you found that out and were able to jump on that so quickly. My son’s experience definitely taught me the value of being involved in your kid’s life and being an advocate for them in the classroom. (And when I say advocate, I mean working in partnership with the teacher to help your kid read and do homework outside the classroom.) It was scary at times. I’m just glad my son persevered.
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My daughter seemed to be fine after a few years. She was teased about her funny glasses at first.
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Wow, what a powerful post and lesson, Brian. Amazing kudos to you, your wife and to your son – but good grief, that doctor. What’s most inspiring to me is the way you parse the message – grateful for the diagnosis, but able to prove the rest wrong. And maybe that’s one of the keys to resilience – mining the nugget you need and shaking off the rest? Great post!
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“mining the nugget you need and shaking off the rest” . . . I think you’re right Wynne, that seems to be a theme running through a lot of our stories. I’m not a big basketball fan, but I always think of Michael Jordan getting cut from his JV high school basketball team. It’s a popular sports story. He obviously mined the nugget (ie, the pain of getting cut), shook off the rest (other’s evaluation of his talent) and used it to drive him throughout the rest of his career. Love how you phrased it.
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Wow – that’s a great example from Michael Jordan. Love it and love all these great stories of resilience!
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What a beautiful story, Brian and a great example of resiliency. I can feel your immense pride and joy and congrats to your son for overcoming the adversity and not letting his diagnosis define him.
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Thanks Ab, much appreciated. Any credit goes to my son.
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Great story Brian and very inspiring! Congratulations to your son for overcoming such an obstacle, and to you for helping him do it.
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Thanks Todd, I appreciate that, but he did all the hard work. I’m not trying to “humble brag” or being false modest or whatever the term is — I’m just not sure I would’ve been able to achieve what he did.
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I’m pleased you and your son didn’t allow the emotionless doctors diagnose to stop you from moving forward! Cheers to your family working together to overcome this obstacle! And by you writing about it here – may other find inspiration in this post.
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Thank you AW! I’m just glad to be on this end of the journey and not starting it all over again. 🙂 🙂 🙂
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