…”these kids learn younger than their peers that life means doing hard things.“
Some people become experts because they study their subjects, while others do so because of their lived experience. Don Winn comes by his expertise in dyslexia for both reasons.
I met Don when he contacted me for an interview about The Invisible Toolbox. Around this time he gifted me with a copy of his own book Raising a Child with Dyslexia. This clearly written, well researched parenting guide actually includes wonderful advice for all parents. But stories about his own struggles with dyslexia as a child piqued my curiosity as a teacher and made me want to understand more. How does someone whose needs were so painfully overlooked as a child—both emotionally and academically—manage to overcome them?
Don personifies the idea that it’s never too late to parent yourself. With the help of a few mentors along the way, he has not only faced the reality of his own learning and functioning differences, but has also become an inspiration and source of extraordinary knowledge, through his writing and speaking, for parents and children who deal with dyslexia.
In our conversation, you’ll learn about one of Don’s earliest mentors who he believes was the reason he was able to persevere through his dark days in elementary school. His grandmother who read to him filled his invisible toolbox with the understanding that reading and the wonderful closeness that comes from sharing books is worth the struggle. And so, Don Winn never gave up and gained what he believes is the superpower every dyslexic child has the potential to learn.
About Don Winn:
Don M. Winn is the award-winning children’s fiction author of the Sir Kaye the Boy Knight series of children’s chapter books and the Cardboard Box Adventures collection of thirteen picture books as well as the nonfiction book for parents and educators Raising a Child with Dyslexia: What Every Parent Needs to Know. As a dyslexia advocate and a dyslexic himself, he is fully committed to helping reluctant and struggling readers learn to love to read. Don frequently addresses parents and educators on how to maximize the value of shared reading time and how to help dyslexic and other struggling readers to learn to love to read. He’s published articles about dyslexia and reading in MD Monthly, the Costco Connection Magazine, TODAY Parenting, Fostering Families Today, and many others.
Can you explain what dyslexia is? Most of us think it has something to do with the reversal of letters that makes reading difficult. Is there more to it than that?
Oh, there’s so much more to it than that! Although first medically documented about 130 years ago, there are still a lot of misconceptions about dyslexia.
Dyslexia occurs when the brain develops and functions differently. It’s a neurological difficulty with decoding the written word, not an intelligence issue. The written word is a code that requires the brain to match seemingly meaningless marks on a page with the sounds we’ve heard from birth, and not all brains are structured or wired to do this effortlessly. Dyslexia is often hereditary, and rarely gets noticed until a child enters school and begins to struggle with literacy.
Experts estimate that approximately ten percent of the population is dyslexic. Most of these people never get diagnosed. Dyslexia can sometimes be difficult to diagnose because it varies so widely from person to person and can affect a broad spectrum of abilities. To complicate matters, dyslexia is actually a family of sibling conditions, and a person may experience any or all of the following conditions:
Dyscalculia: Trouble with math, numbers, sequencing, sense of direction, and time management.
Dysgraphia: Illegible handwriting or printing, incompletely written words or letters, poor planning of space when writing (running out of room on the page), strange contortions of body or hand position while writing, difficulty or inability to take notes (which requires thinking, listening, and writing simultaneously).
Dyspraxia of speech: Misspeaking words and/or halting speech. This aspect of dyslexia happens because the brain has problems planning to move the body parts (e.g., lips, jaw, tongue) needed for speech. The child knows what he or she wants to say, but his/her brain has difficulty coordinating the muscle movements necessary to say those words.
Dyspraxia: An issue that involves the whole brain, affecting movement. This can include gross (large) muscle movements and coordination as well as fine motor skills (pen grip, unclear hand dominance, trouble fastening clothes and tying shoes, difficulty writing on the line on paper). Dyspraxia can cause clumsy, accident-prone behavior due to proprioceptive challenges (ability to tell where the body is in space), trouble telling right from left, and erratic, impulsive, or distracted behavior.
All these difficulties are caused by structural brain differences that mean reading, writing, math, spelling, and more will never be automatic. A dyslexic person will never read or perform other affected tasks quickly. No matter how brilliant a dyslexic student may be, these tasks will always be laborious and will generally require extra time to complete.
You’re dyslexic yourself. When were you diagnosed? What was school like for you, and did your experience change after your diagnosis?
First of all, I am severely dyslexic and have three of its sibling conditions—dysgraphia, dyscalculia, and dyspraxia. I went to school in the sixties, when very little was known about dyslexia or how to help dyslexic students. I felt like a normal, happy kid until I entered first grade. But on the first day of first grade, my whole world collapsed into itself, and in the space of a seven-hour school day, everything changed for me. I simply could not figure out how to do the things the teacher asked me to do.
Memorizing the alphabet, that long sequence of 26 unrelated letters, plus their sounds; reading and writing my numbers; holding a pencil the way the teacher wanted me to hold it; following instructions that had multiple steps or those that involved telling my left from my right; and so much more felt impossible even though I was trying my very hardest. My brain struggled to make sense of the fact that everyone else in my class could do these things easily. I didn’t understand why I could not. I felt like a duck out of water—I didn’t belong, and I became very anxious. It was like everyone was moving at a fast-forward speed, and I couldn’t raise my hand and say, “Stop! Slow down! I don’t get this! I can’t keep up!” Deep inside, I knew that day that there was something very wrong with the way my brain worked and things went downhill from there.
Though I didn’t have the words to describe it at the time, I now realize that neither the speed with which information was presented nor the manner in which it was taught were good matches for my processing abilities. I flunked first grade. Partway through first grade (for the second time), a special ed teacher who had taken an extension course on dyslexia recognized my symptoms and suggested that I might be dyslexic.
Once I had the label, the only thing that changed was that I now spent an hour a day with the special ed teacher to work on reading. Unbeknownst to me, my parents, or the teachers in my life, I also had dysgraphia (trouble writing), dyscalculia (trouble with math, numbers, and learning/doing things in sequence), and some dyspraxia (trouble with coordination of muscle movements needed for multiple tasks). None of those issues were ever addressed, and they caused me a lot of stress.
That all sounds incredibly difficult. I imagine that coming to terms with a diagnosis of dyslexia both for oneself and one’s child—and also realizing you didn’t get the support you really needed— had to be quite an emotional journey. Can you tell us about that?
Over the years, the one thing that created the most difficulty for me was the lack of information leading to understanding, accepting, and coping with my dyslexia. My teachers never explained things to me, my parents never had a single discussion with me about what was going on or what we could do about it, and most importantly, there was no one I could talk to about my fears, feelings, and frustrations. About ten years ago, my wife and I made a project to understand dyslexia, learning all we could about current science, teaching methods, genetic involvement, and emotional and educational techniques that can help dyslexics cope with the fallout of their condition.
We took a huge leap forward in our quest at an early screening of the 2012 documentary The Big Picture: Rethinking Dyslexia. I had never before seen such a comprehensive and relatable depiction of all the things I had been struggling with since first grade. Viewing this documentary had a profound impact on both myself and my wife. I finally understood myself in a way I never had before, and now realized that I had a tribe. And although my wife has a background in biochemistry, psychology, and genetics, before viewing the documentary, she was completely unaware of the breadth and scope of the effects of dyslexia.
That must have been hugely comforting. And now you’ve become a powerful advocate for dyslexic children and their parents.
As I started to better understand my own dyslexia and the reasons why I struggled throughout my school years and early adult life, I realized that most of my struggles could have been minimized with a proper understanding of dyslexia, ongoing support, and accommodation.
Just having the label is not enough. It’s a start, but children with dyslexia and their parents need to understand what that label means in terms of life impact. And most importantly, kids need social and emotional support to be able to show up for the hard work of learning and performing academically. Warm, loving, open communication is key. A child must have hope.
Much like the show, What Not To Wear, my life is a version of “How Not To Do Dyslexia.” I don’t want any child to struggle unnecessarily like I did.
When you consider your own and your son’s school experience, what kinds of support have teachers provided that were most helpful?
Really, the only support I ever received was from the special ed teacher in helping me to read. After that, I was basically on my own. I didn’t understand my dyslexia and I didn’t have any social and emotional support or accommodation. My parents’ divorce compounded this situation and then from 5th grade on, it seemed like I was constantly moving and starting at new schools, so my entire early education was anything but positive.
Our son got much better accommodation and help in school. The elementary school he attended was particularly good. It’s amazing what a difference a good counselor makes, and our son’s counselor took a personal interest. He would take the students who were struggling out of class when they were particularly stressed, and they all went outside and built birdhouses. It was a great way to defuse an escalating stress response, get centered, and recharge their batteries for the next educational task.
Does dealing with dyslexia get easier as an adult? How does it continue to affect you?
Accommodation and social and emotional support for dyslexia are just as important for an adult. Every task takes more time and that’s something that never changes. So planning my day, trying to minimize unexpected demands whenever possible, and good communication with my wife are so important. In fact, one of the most popular articles on my blog is one I co-wrote with my wife, called, “Living With an Adult With Dyslexia.” In that blog, my wife shares what she has learned about what works well for us.
Dyslexia continues to affect me with mental and even physical fatigue. I get lost easily, I struggle to keep track of things, and I face a constant demand for brain bandwidth that sometimes isn’t there when I need it for reading and writing.
In your book you mentioned several famous dyslexic people—Walt Disney, Albert Einstein, Richard Branson, Leonardo da Vinci. How often does giftedness occur with dyslexia? Do dyslexics have any special inherent advantages or creative powers because of their learning differences?
Dyslexics have definite strengths, like seeing the big picture and outside-the-box thinking. They may also be very good at pattern recognition and spatial reasoning. However, every child is different and not all dyslexics have the same abilities. Some dyslexics may be gifted in special ways, but all dyslexics have the ability to develop great tenacity and grit. In fact, they have to. Because every required task demands exponentially more effort for a person with dyslexia than for a non-dyslexic, these kids learn younger than their peers that life means doing hard things. To me, this is the real superpower of dyslexia.
For example, my dyslexic grandniece wanted to enroll in a high school program that would allow her to graduate with an associate’s degree. In order to do this, she had to pass a test. It required several hours to take this test. But she really wanted to get into that program, and so she worked hard and took the test 9 times before she qualified. That’s the kind of grit I’m talking about. I’m so proud of her!
I just finished reading your book and so appreciated the way you slipped in stories from your own journey with dyslexia along with so much helpful information and advice on parenting dyslexic children. Your grandmother had a positive impact on you. Can you tell us about that?
Thank you! My paternal grandmother was the only person in my family who read to me. While we didn’t get to spend time together often, when I did get to sit in her lap and share books with her, I felt safe and loved. She read slowly and asked me lots of questions to help me think about what we were reading together. I didn’t feel stupid with her like I did at other times when faced with reading. There was never any pressure, only fun. And she was actually interested in hearing what I thought! As a result of those interactions, there was a tiny place in my brain that linked reading with pleasure, and most importantly, with meaningful human connection. That little ray of hope helped sustain me as I persevered year after year with my difficult reading tasks. To this day, the time I spent with my grandmother is one of my fondest memories.
Your grandmother gave you a powerful gift. What does your story about your grandmother have to say to us about what every child needs from a loving adult in their lives?
It’s not just about learning to read. Children need to feel loved and safe, and shared reading is the perfect format for creating that bond. During shared reading, a child feels loved, feels the benefits of enjoying a parent’s (or other person’s) complete attention, and feels seen and heard. An adult who chooses to spend time reading to a child says by their actions, “You matter to me. You are valuable. I want to spend time with you. I’m interested in your feelings and thoughts.” Nothing is more deeply nourishing to the soul of a young child, and a parent cannot go wrong by focusing on this important pursuit.
What’s your best piece of advice for any parent who is concerned that their child may have a learning issue?
Thankfully, there are early warning signs that savvy parents can watch for, starting in infancy. Some tests can provide diagnostically accurate results for children as young as eighteen months of age. I provide a comprehensive list of current testing methods, broken down by age group and diagnostic focus in my book, Raising a Child with Dyslexia: What Every Parent Needs to Know.
Additionally, all my dyslexia articles I’ve blogged about are available here: https://donwinn.blog/dyslexia-articles/. Educating yourself about dyslexia and the many ways it can show up is important. Discovering ways to provide ongoing social and emotional support and accommodation will optimize your child’s potential.
My biggest recommendation to all parents: read to your child from infancy on. Start now. Start where you are. You’ll be glad you did.
Where can parents and educators learn more about dyslexia and how can they connect with you?
My book, Raising a Child with Dyslexia: What Every Parent Needs to Know, offers a comprehensive approach to dealing with the challenges of dyslexia in the family and at school. Understanding the importance of early detection, testing, working with a child’s school, investigating possible behavioral issues, appreciating the role of social and emotional learning, recognizing the strengths of dyslexia, embracing advocacy, and much more is covered in this user-friendly guidebook. While the writing took me many months to complete, this book has been in the works for over 53 years—ever since I became aware of my own dyslexia and the needs it presents.
I’ve often wondered how my life and the lives of other dyslexics who did not receive adequate accommodation, support, and understanding would be different had we all gotten the help we needed during our most formative years. With the knowledge that’s available now, there is no reason why any child with dyslexia needs to experience this level of hardship ever again.
My website/blog is https://donwinn.com/, and you’ll find lots of information about my books and resources for teachers and parents there.
All of my children’s chapter books are available in softcover, hardcover, eBook, and audio and my picture books are available in softcover, hardcover, and eBook formats. Visit my Amazon author page for more information.