Dyslexia and Agency: Healing the Connection

By: Don M. Winn

My life is an interesting and curious dichotomy; I am a severely dyslexic author. Some parts of the story are difficult to hear, but don’t worry, there’s a happy ending. Before I started school, I felt like a normal kid. I rode my bike, climbed trees, played marbles, explored, dug holes, and played with firecrackers in the empty lot behind our house. Ours was not a reading household. My dad was always away on business and my mom was an overwhelmed mother of four who never read for her own edification (at least not that I noticed as a kid) or to her children. It just never occurred to her. Without exposure to the printed word or being asked to memorize things in sequence (like the alphabet) or integrating numbers into my life in any significant way, I was blissfully unaware in my preschool years that my brain wasn’t like everyone else’s. There were signs, of course: it took me forever to learn to tie my shoes, I had no sense of direction and got lost easily (still do), learning right from left was a challenge (I finally figured out that my right hand is the one I write with), and remembering numbers like our phone number or important addresses was next to impossible. Moments like these caused me no small anxiety, but it was easy to dismiss those challenges as unimportant and get back to climbing trees. Life wasn’t perfect, but I had three older siblings I looked up to and I lived next door to my best friend, so life was pretty good.

The day I entered first grade, everything changed. Suddenly, I was confronted with abundant evidence that there was something very wrong with me. Most of the other kids in my class either already knew the alphabet and the numbers that the teacher had tacked up around the ceiling of our classroom or they quickly picked them up that day. I was different, and not in a good way. It was hard to listen, hard to sit still, and impossible to recall what the teacher had just said. Intuitively, the other students could sound out letters and then words, but my brain just couldn’t seem to connect those meaningless little squiggles on the page with the sounds of spoken words. I became incredibly anxious, and I didn’t have anyone to talk to about my fears. I was quickly becoming convinced that I was stupid, and that, no matter how hard I worked, I wouldn’t be able to learn, that I had a broken brain, and that if anyone found out, I would be in big trouble or even be abandoned. As days turned into weeks, then semesters, I fell farther and farther behind. I developed digestive issues and frequently tried to stay home with a “stomach ache.” No matter how hard I worked, I just couldn’t seem to learn the things my teacher wanted me to learn. And I was deeply ashamed of that. Needless to say, I flunked first grade. I was the only one in my whole school to do so.

My second time through first grade, I received help from a Special Ed teacher, one who had recently taken an extension course on dyslexia. She met with my parents and said she suspected I might be dyslexic. She was right! Of course, this was the 1960s, and while dyslexia was beginning to pop up on the educational radar, there were very few developments other than the ability to label a child with the diagnosis and maybe offer the child the opportunity to spend some one-on-one time with a reading teacher. I knew the name of what was wrong with me, but I had no idea what to do about it, or even if anything could be done. Long story short, the rest of my public school education was still an arena filled with anxiety, failure, frustration, a deep sense of unfairness, constant struggle, shame, and creative avoidance strategies.

Little did I know that dyslexia is a complex issue with a tremendous spectrum of symptoms and varying degrees of involvement. Little did I know that I was not alone at all, and that there were effective ways to help myself through my educational struggles. And back then I never envisioned the possibility that there was a way for me to actually feel good about who I am and make authentic contributions to society. Thankfully that has changed, though it took nearly four decades to accomplish.

Here’s the thing: even though fifty years have passed, very little has changed in the life of today’s dyslexic student. Some experts estimate that as many as one in five people struggle with dyslexia in some form, and to some degree. Most never get diagnosed, and even those who do don’t always get the support or accommodation they need to be able to keep up with their academic workload, let alone to reduce anxiety and feel good about themselves. And that needs to change. It’s not acceptable that kids and adults with dyslexia live through years, even decades, of severe anxiety, depression, and needless struggle when the right information and educational techniques can change everything. It’s time for all of us to help kids and adults with dyslexia rediscover their agency.

What is agency, and how can recovering it help an individual with dyslexia? Agency is defined as a person’s ability to adapt to stress, with the result that they can then direct their life. Agency is what allows people to respond to a challenge by pausing, evaluating what needs to come next, and then acting. Agency involves both taking immediate action as well as the having the ability to plan for longer-term projects and future complications or challenges. When a person feels in control of their life, capable, and confident, they are experiencing agency. Agency is also key for remediating anxiety since a person with a healthy sense of agency believes they can get the job done and has a plan for doing so, even when it’s a challenging one. Dyslexia in the absence of support and intervention causes a loss of agency: loss of confidence, loss of control, feelings of helplessness and hopelessness, shame, emotional shutdown, and isolation. It’s no coincidence that frustrated, isolated, hopeless-feeling struggling readers often turn to substance abuse very early in life. Escape often feels like their only option.

My mission is to help dyslexics and other struggling readers rebuild their agency by educating parents, kids, and teachers about dyslexia. Dyslexia is defined as trouble decoding the written word, and it has a variety of sibling conditions including dysgraphia (trouble writing), dysphonia (trouble decoding the spoken word), dyscalculia (trouble with math, directionality, and sequencing), dyspraxia (a lack of physical coordination), and dyspraxia of speech (trouble forming spoken words). Dyslexia is a processing issue, one involving structural issues in the brain, not an intelligence issue. One cannot outgrow dyslexia, it is what it is for life. Dyslexia is a thief of time, because it’s like having dial-up internet in a world that demands high-speed information transfer. Remember dial-up? A friend sent you a vacation picture and twenty minutes later the top inch of the screen was all that was loaded. It could take an hour or sometimes more to see the full picture. Where was all that data in the meantime? Stuck in the buffer as it was interpreted and sorted out by the processor. When a dyslexic is exposed to new information, it takes longer to process. Sometimes considerably longer. We have much smaller buffers than non-dyslexics. So everything—literally every academic or work task—takes more time and more brain effort to get done. But we can accomplish anything we set our mind to! Each of us has to figure out our particular strengths, weaknesses, and processing style, and then our potential becomes reality! Indeed, dyslexia offers some important strengths: creativity, the ability to see the big picture, the development of tenacity, and a passionate attachment to things we care about. Developing agency as a dyslexic involves educating ourselves on our own reality, accepting that reality, and then committing to moving forward in meaningful, effective ways.

My mission to help dyslexics rebuild their agency is a big mission with a lot of moving parts. Keeping current on research, teaching/learning strategies, diagnostic methods, community experience, and success stories is a big part of what I blog about. And then there are my books for kids ranging from newborns to middle grade readers. My children’s books feature relatable, lovable characters who struggle with real issues like the rest of us. In psychology, this pattern is called a “hero of self-reference,” and it’s an important technique in creating agency. When a child reads a book or shares a book with an adult that has a character struggling with the same difficulties and feelings he or she does, suddenly the child no longer feels so alone, so different. And as children see the character, sans superpowers, figuring things out and being successful, children begin to believe that the same outcome is possible for them as well. I strive to write characters that are engaging enough to entice even the most reluctant struggling reader. Some of my most precious feedback comes from kids who tell me that the first book they completed all by themselves was one from my Sir Kaye, the Boy Knight series. Helping young readers rebuild their agency involves helping them create a new identity as a reader, a writer, and an excellent student, and my blog and the project pages on my website offer targeted, effective strategies with which parents and educators can help their children or students meet that goal. Another tool in the agency toolbox involves the skilled use of questions. Each of my picture books includes questions at the end for parents or teachers to ask the child. Asking a child what they think, believe, or feel is one of the most powerful ways to build agency. Questions tell a child: “I’m interested in what you think and feel. You have good ideas and instincts. You are important to me.” These messages are a soothing balm to a young spirit that has been troubled by feeling different or inadequate.

Clear information, effective strategies, wonderful books and activities, and loving support and encouragement are the tools in the Cardboard Box Adventures Publishing Company’s toolbox. I invite you to explore them and use them today to make a difference for your own struggling reader, even if that person is you!

Don M. Winn is an award-winning children’s author, speaker, and dyslexia advocate. He has written numerous articles about dyslexia and helping struggling readers. His blog archives are available at www.donwinn.com

Author: NFReads.com

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