Talking To Your Disabled Child

If you're holding this book, chances are you’re facing one of life’s most profound challenges: raising a child with a disability. Whether your child was just diagnosed or has been living with a condition for years, you're likely grappling with fear, uncertainty, and a desperate need for answers.

Or perhaps you are that child, now grown, searching for perspective. Either way, I want to talk to you not with clinical distance or empty inspiration, but as someone who has lived this life from the inside. I’m now 62 years old, having spent every one of those years living with Duchenne muscular dystrophy (DMD), a progressive condition that weakens muscles over time and dramatically shortens life expectancy. And yet, here I am. This book isn’t about beating the odds with platitudes. It’s about defining your own odds. It’s about the daily reality of disability, the emotional terrain we often avoid, and the profound strength that can come not from denying hardship but from walking straight through it, together. While every person’s path is unique, I hope the lessons I’ve learned can offer guidance, comfort, and inspiration.

Living with a progressive neuromuscular condition like DMD has shaped every part of my life—shaping my relationships, my choices, my worldview, and my sense of purpose. I’ve outlived many friends with similar diagnoses, and not a day goes by that I don’t think about them. Rather than letting grief consume me, I’ve tried to honor their memory by living as fully as I can, and by passing along what I’ve learned. One of the best ways I know to do that is to speak plainly, openly, and compassionately to the next generation of children and their families navigating a similar path. I remember my friend Steven, who passed away from Friedreich’s ataxia when we were both just ten. Even as kids, we knew we weren’t on the same path as our peers, and losing him so young forced me to rethink my worldview and what it meant to form deep, lasting relationships when time is short. His memory remains with me, a reminder that even short lives can leave a deep impact. At fourteen, I lost Frank, who also had DMD. It was a cruel time to lose someone just as we were beginning to imagine our futures. His death forced me to confront my own mortality, directly altering the choices I made about my goals and sharpening my sense of purpose. But rather than being paralyzed by fear, I felt a growing resolve to make my time count. In college, I met Jim, another young man with DMD, whose spirit and intellect shone despite the constant shadow of respiratory decline. He didn’t live to complete his degree, but his life taught me something vital: that physical weakness doesn't diminish the power of one's presence or voice. Over the decades, I’ve known many others, through online groups, hospital visits, advocacy circles. Some of us make it further down the road than others. Many do not. But all of them mattered. And all of them taught me something.

So why am I still here? Part of the answer lies in luck: my particular genetic mutation has spared me from cardiomyopathy, a heart condition that shortens many lives with DMD. Part of it lies in medical progress, like portable, noninvasive ventilators that now help me breathe. But the biggest reasons? Love. Community. Purpose. It is that sense of purpose that fuels the daily resilience needed to stick with demanding medical routines, therapies, and dietary changes. When you have a reason to get up every morning, compliance with difficult treatments doesn't feel like a chore, it feels like an investment in your future. The people in my life who saw me not as a patient, but as a person, gave me that purpose. That’s what I want to give back with this book.

To the parents reading this: You are not alone, and neither is your child. There is so much fear in the unknown, especially after diagnosis. But there is also beauty, strength, and resilience in the life that lies ahead. Your child will not be defined solely by a diagnosis. They will be defined by how you speak to them about it, how you support them, and how you show them what love looks like when it’s put into action.

To the disabled children reading this, whatever your age: You are not broken. You are not less. Yes, life will be different, often difficult, sometimes unfair. But it can still be filled with joy, purpose, connection, and yes, even laughter. Having a progressive disease means your muscles might fail you, but it doesn't mean your spirit has a defect. Your body is simply navigating a different path, and that path is just as valid, just as whole, as anyone else's. You have so much to offer this world. I’m not speaking in theory. I’ve lived it.

My parents were my first champions. They never made me feel like a burden. My siblings were my allies. And my partner, Joan, has walked beside me for more than three decades, facing the challenges of DMD as a teammate, never a caretaker in name only. Their belief in me has helped me believe in myself.

And that, ultimately, is why this conversation matters: because disabled children need to believe in themselves, not in spite of their condition, but through it. And they won’t do that unless someone shows them how. That someone might be you.

This book is my attempt to help you have those hard, loving, honest conversations, whether you're a parent, a grandparent, a teacher, or the child on the receiving end. I want to share what I’ve learned, not just about surviving with a disability, but about living with one.

I don’t claim to have all the answers. But I do have the lived experience of six decades in a disabled body and a very full life. What this book does provide is a roadmap for honest, fearless communication—the kind of open dialogue that strips away the paralyzing fear of the unknown and replaces it with practical strategies, mutual respect, and a shared commitment to building a rich, purposeful life together.

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