This week, I spoke with author Don M. Winn about his life with dyslexia. Check out Part I of his interview below.
1. Reading through your book, Raising a Child with Dyslexia: What Every Parent Needs to Know, my heart sank when I read about your early schooling. Can you share some memories of those experiences for context for this interview?
First, please allow me to say thank you for your interest in me and my work! I have been so touched by your work and the story of you and your son. It’s an honor to be here.
One of the most traumatic events of my early schooling happened in my second-grade gym class. We were practicing for a school event where all of my class stood in a circle around a big parachute, turning to the right and left, lifting and lowering the parachute in sync with the 5th Dimension song, “Up, Up, and Away.” As we practiced the choreography, he’d call out “Go left!” then, “Up!” then, “Go right!” and, “Down!” Everyone could do it but me. As a dyslexic, determining left and right was never automatic for me. Each time he called out a direction, I had to stop and think which hand I wrote with, because I knew that was my right hand, but by the time I had finished these computations, the class was already three or four steps ahead. I lifted up when I should have been lowering, stood still for far too long, and went left or right when I should have done the opposite. The teacher shouted at me several times to quit goofing off and finally kicked me in my behind. I was so humiliated but also scared because I really was doing the best I could.
This was part of a long line of experiences that made me afraid that I would never be able to do what was expected of me, no matter how hard I worked. As a child, I was repeatedly confronted with my deficits, which became the foundation for my belief that I would never be able to amount to anything. Several adults in my life reinforced that belief for me by making such statements as, “You’ll always be digging holes or sweeping floors for a living.”
2. Do you recall specific childhood experiences that impacted you?
I was a happy kid until I went to school. My differences had never presented themselves to me or others before that. Playing outside and coloring don’t reveal many learning deficits. But in the classroom, nothing worked for me. As a dyslexic who also has dyscalculia, dysgraphia, and dyspraxia, doing work that involved sequencing, numbers, holding a pencil, writing, memorizing information in any sort of order, following directions, sitting still for long periods of time, and more were challenging for me. Within hours of starting school, I began to develop severe anxiety and the stomach/digestive issues that plague me to this day. In fact, every single day of school, I woke up with knots in the pit of my stomach and anxiety that made it very difficult to even face the day. Suffice it to say that by the time first grade was over, anxiety and shame had become my constant companions. These were compounded by the fact that I was the only kid who flunked first grade and I had to take it a second time. My mom never let me forget how disappointed she was with me, in subtle ways, and that haunted me, because if I wasn’t good enough to please my mom, how would I ever be worthy of love or acceptance?
3. When did you recognize you had dyslexia?
The second time through first grade, I had a special ed teacher who had taken an extension course on dyslexia and recognized my struggles. She invited my parents and me over on a Saturday morning, put me in a quiet room with a bowl of Cheetos, and met with my parents in another room. She discussed dyslexia with them and told them she would give me one-on-one time every day to help me with reading. All I was told was that I had dyslexia and that I would need extra help to read. My teachers never discussed it with me, and neither did my parents, ever, so that makes this a really difficult question to answer.
All I had was the label. In fact, I wasn’t able to really put the puzzle pieces of my life together until my wife and I went to a private screening of the 2012 film, The Big Picture: Rethinking Dyslexia. We both came away from that experience tearful, shaken, and eternally grateful, because, at 51 years of age, I finally—finally—understood myself. I recognized my lifelong struggles in the stories of the participants in that documentary. I was shocked at how deeply dyslexia had affected my life, my health, my work, and personal relationships. Immediately my wife and I embarked on a deep dive to understand more, and the rest, as they say, is history.
4. How have you coped with dyslexia?
The short answer is, emotionally, I didn’t really. Not until I began understanding dyslexia and its sibling conditions, and changing what I believed about myself as a result. True, I found my way through school somehow and went to technical school at the age of sixteen (after discovering an affinity for computer programming), but school and later my professional life was basically a continuation of the daily anxiety and stomach problems that developed in first grade.
Supporting my family came at great cost to my health, resulting in multiple bowel surgeries and endless visits to specialists. Before I understood my dyslexia, dyscalculia, dysgraphia, and dyspraxia, I was often angry and very frustrated. It always felt so unfair that doing the things required of me was so much harder for me than for many of my colleagues. I’m so grateful that now I can meet myself with compassion, rather than those negative emotions. While my struggles won’t change—one never “outgrows” dyslexia—the way I feel about things and about myself is slowly changing, and that makes it all much more manageable.
5. What impact has your school experience involving dyslexia had on your life?
The answer to this question is one of the reasons my work in the field of educating parents and educators about counteracting the negative social and emotional aspects of dyslexia is so important to me. Scientists now know that the brain forms connections that link experiences, especially traumatic ones, with physical (somatic) symptoms. And the more often a person experiences a particular traumatic situation, the more robust those neuronal connections become, and the more intensely he or she experiences the resulting physical symptoms of “dis-ease.” (Literally, a lack of ease.) For myself, a lifetime of academic and professional performance anxiety led to chronic irritable bowel syndrome, an ileostomy (thankfully, that’s been reversed), countless sleepless nights pacing the floor, and a lifetime of feeling bad about who I was as a person. I felt broken.
I also largely missed out on discovering my strengths, since the limited dyslexia intervention I had focused solely on reading, with no support for my other processing challenges. Additionally, there was zero communication about anything I was experiencing, and no safe, loving place to discuss my feelings about it all, which greatly added to my fear/anxiety levels, shame, and feelings of unworthiness.
6. How does dyslexia affect you as an adult?
It’s all very much present. The difficulty reading, writing, sequencing, all of it. Reading and writing always take more time. I have constant fatigue since everyday tasks are so effortful. If I’m going to be at a conference where I offer signed books, I have to start signing books days before, because it takes me so much time and effort to sign my name, and I’d rather spend that time at conferences interacting with people. Sequencing problems are insidious and omnipresent. It’s astonishing how often one is called upon to remember steps of tasks, lists of groceries, directionality, family bookkeeping steps, driving directions, and more.
One morning I was taking a friend on some errands, and we had to drive back and forth to his house four times. Each time, I had to enter his address in my navigation software. Even though I had been to his house several times before, I needed that turn-by-turn assistance. Finally, on the fourth trip, he turned to me and said, “You really can’t do this, can you?” The sequencing challenges due to dyscalculia are, I think, what I notice the most. I am still surprised at how often they occur.
7. In your book, you talk about “shared reading and the subconscious.” This thought fascinated me as I came to read about this topic by reading Myers Briggs’ book. What led you to such insights?
Part of it is experiential. My paternal grandmother was the only person who read to me in my family. 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 like I did at other times. 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 a meaningful human connection. That little ray of hope helped sustain me as I persevered year after year to slog through my reading tasks.
Part of my interest in shared reading and the subconscious comes from long conversations with my wife. She is a scientist and counselor who is a fast reader, and we love to discuss things she has read. She can literally be finished with a nonfiction book in the time it takes me to read part of the first chapter! We share an interest in brain science, psychology, trauma, and behavior, and love using recent science to help us understand our own experiences in life. So many topics we’ve explored together ended up in my book, Raising a Child with Dyslexia: What Every Parent Needs to Know.
One topic that I discuss often with parents is the idea of the hero of self-reference. This term refers to a character in a book that a child can relate to, one who has struggles, feelings, or experiences like his or her own. These relatable characters are key to a child’s well-being and development. First, they help the child see that they aren’t alone in how they feel or struggle, which dissipates shame and lowers anxiety. Second, that character also helps offer a sense of tribe, rather than isolation. Third, as they see the character figure out the problems, sort things out, ask for and receive help, and ultimately succeed, it creates the possibility in the child’s mind that they can do the same.
In my own childhood, because I never found solutions to my problems, I (incorrectly) assumed that there weren’t any. Sadly, most kids make the same assumption. But with the right books, and time spent reading with loving parents, any subconscious negative beliefs about themselves and their potential can shift to feelings of curiosity and possibility. Books literally have the ability to teach us how to live.
Part II to come soon.
About Don M. 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 US News & World Report, the Costco Connection Magazine, TODAY Parenting, Fostering Families Today, and many others.
