“Growing up with dyspraxia in America was a nightmare”

It was the late 1980s and I didn’t know why my second grade teacher was yelling at me. He had given me a writing assignment and I couldn’t stay inside the lines on the paper. I couldn’t spell. I couldn’t even write words in the right order or direction.

He kept telling me I had to try harder, but the harder I tried, the more everything went wrong. Eventually, my parents were called into school because I couldn’t write. “What is wrong with me?” I thought. Was I stupid? Was something wrong with my brain?

Early testing that year revealed I had some motor and coordination problems, but doctors didn’t know how to classify it. They called it developmental coordination disorder, also known as dyspraxia, which they said solely affected my physical coordination. But my clumsiness was only part of my story. It wouldn’t be until much later I knew the full extent of my condition.

Growing up in the United States with a hidden and complex neurological disorder was a nightmare, because it seemed as though I was alone. My parents felt hopeless and I was bullied by kids and teachers alike. Worst of all, my condition was putting me on a path of self-destruction.

During my teenage years I experienced anxiety and agoraphobia, while using alcohol to cope with my condition. I had a hard time gauging the amount of alcohol I could drink, leading to countless blackouts, and eventually alcoholism.

At this stage of my life, everyday seemed impossible to live. Nobody could explain my disorder and all I wanted to do was hide. I would ask older kids to purchase me beer in Florida and would consume five pints a day.

It wasn’t until some very nice people in a small cathedral city in the south east of England, gave me the key to addressing what one of the richest nations in the world could not.

After a grueling 13 years of schooling in the United States, barely passing any of my courses, I was finally off to university in Chichester, West Sussex. After one of my very first assignments an educational psychologist told me exactly what was wrong. “Oh yes, this is developmental dyspraxia. We see it all the time,” they said.

I felt so relieved to have a proper diagnosis, one that went beyond my motor challenges. But I was also incredibly frustrated that it hadn’t happened sooner and that I had never been told about vital therapies which would have made my life so much easier, from safety to social life.

Developmental dyspraxia encompasses more than just motor issues. The diagnoses spoke to every single one of my problems; motor, memory, judgment, processing and function, sensory and language deficits, dyscalculia, and—I’m still sorry, Mr. Shank of the second-grade—an inability to write coherently called dysgraphia.

My support network in the United Kingdom could name everything I was getting wrong. And they did more than name my troubles, they gave me clear strategies to cope with all my issues. From ocular motor skills, memory, judgment, processing and function, senses and language, so much support was available to me there.

I got help taking public transportation; the Dyspraxia Foundation based in the U.K. connected me with social groups, helped me manage attendant comorbidities like substance abuse, anxiety, and gave me the tools to cope with life in general. Knowing that I wasn’t all alone, that this wasn’t all in my head, was paramount in helping me overcome these issues.

Although I had obtained a diagnosis, at this point I was still drinking. Drinking heavily was normal among my peers and I was using alcohol as a crutch to apply my social skills. I would regularly buy cans of cheap beer, and drink three in my room before heading to the student bar to drink more.

Returning to the U.S., I began to use the tools I had learned to improve my life, but the struggle continued. There is no cure for dyspraxia and despite the support I received in England, even now, my independence is limited.

Ocular disabilities make driving impossibly dangerous, dyspraxia still affects my emotions and social interaction—social interactions have to be memorized like actors memorize scripts—and judgment issues still cause embarrassing social mistakes.

But I have been on a continuous journey to master my life using these tools, and am learning to help others with my condition. I wanted to see to it that no other kids in the U.S. had to endure what I did, so I started a national charity called Dyspraxia USA.

Despite all my challenges, I was lucky—I’ve been able to stay sober for 15 years, and I got married to an amazing woman, with whom I have two amazing kids. As dyspraxia has a genetic component, we were unsurprised when our amazing twins received their own dyspraxia diagnosis.

This time, we were ready—both kids were given early interventions with a neuropsychologist, and we have started therapies to make their lives easier. Living with a hidden neurological disorder means I still experience some anxiety, but I am able to cope with the help of my incredible wife, kids and charity.

Through my organization, I hope to educate children, their caregivers, and everyone who comes into contact with children who have the condition. Kids with dyspraxia are not lazy or defiant, they will have good and bad days like anyone else. They have a lifelong neurological condition that will continue to affect them throughout their lives, but they too can succeed beyond their wildest dreams.

Dyspraxics count among them some incredibly gifted people who use their bodies and brains in ways that astound—actors, dancers, athletes, scientists, doctors, you name it. Kids have to learn differently, but they don’t need to be held back.

With societal support, we can start providing training courses to American schools, work on the gifts of neurodiversity with corporations using neurodiversity literature and make sure those with dyspraxia are supported from early intervention to places of work.

Warren Fried is a father of two based in Deerfield, Illinois. He is the founder and director of the Dyspraxia Foundation USA. You can visit their website here.

All views expressed in this article are the author’s own.