epilepsy dad

Category: parenting

  • It’s Not Your Fault

    It’s Not Your Fault

    For most of my life, I carried the idea that the things that happened to me as a child were my fault.

    I didn’t think I was a bad kid, but I knew and hung out with plenty of bad kids. My neighborhood growing up wasn’t a stranger to crime and drugs. Compared to many of my friends, I was an angel. But I was a child, and I did childish things as I experimented and explored the world. I swore, stole, lied, snuck out at night, and fought with my sister. But often the consequences of these actions were disproportionate to the severity of the infractions.

    As a result, I began to blame myself for those consequences. It was a survival mechanism. I had to make it my fault because my developing brain couldn’t make sense of the idea that the people who were supposed to protect me and take care of me were hurting me.

    As I got older, that behavior continued. It was easier to take responsibility for everything than it was to shift that responsibility to the other person. It was easier to feel that the work I had done wasn’t enough or wasn’t the right work, which is why the other person was angry or disappointed. The idea that I was enough, that I was worthy, and that I wasn’t to blame never seemed like an option.

    The result was that I spent much of my life in unhealthy situations, convinced that if I could fix myself, everything else would fall into place. But no matter how hard I tried, it never worked.

    I didn’t realize that’s what I was doing until a few years ago. There is a movie trope, “it’s not your fault,” that is a common line used to reassure someone who blames themselves for a tragic event. One powerful example is in Good Will Hunting, where Sean, played by Robin Williams, repeats the line multiple times until Will, played by Matt Damon, breaks down and cries.

    It was a surreal moment to have that play out in my life. At the time, it was directed at my past. It took me time (and therapy) to realize it also applied to aspects of my present, too.

    That realization is what will help me set my son on a different path, one where he doesn’t struggle with blame, shame, and worthiness, the same way that I did. I don’t want him to blame himself for his seizures, his condition, or especially the way the world reacts to him. I want him to be able to put the actions of others on them and not internalize them as what he deserves because of who he is. Most of all, I want him to know—now, not decades from now—that who he is is already enough.

    As parents, we want our kids to have it better than we did. In many ways, that may not be possible given the challenges he will face. But if he can live a life without carrying the blame for others, whatever those challenges may be, he will have a freedom I never knew. A freedom to face what comes without the added weight of shame. A freedom to believe he is worthy of love and belonging just as he is.

    And maybe, in giving that to him, I’ll learn to finally believe it for myself, too.

  • Neurodefender: Video Games and Epilepsy

    Neurodefender: Video Games and Epilepsy

    My first video game console was an Atari 2600 that my sister and I received for Christmas when I was eight.1 It was magical to toggle the switchbox and have an arcade on my television screen. Within a few months, I had a collection of cartridges. Pitfall, Pac-Man, Donkey Kong. I even had that horrible E.T. game. But Space Invaders was my favorite game, and my mother’s boss and I had a friendly competition every time we visited his family.

    I usually won.

    As I got older, I became very interested in computers. My first computer was a Mattel (yes, that Mattel) Aquarius, one of the shortest-lived computers ever to go to market. It had a Tron game that I played constantly, even though I had never seen the movie. But it was the ability to program on the Aquarius that got me hooked and, for a long time, my world revolved around computers and my gaming followed suit.

    My first online games were on a computer. That was back before there were high-powered consoles connected to the internet. I’m talking the days of dial-up modems. I would spend hours playing an air combat game with a classmate, but I was obsessed with the text-based fantasy role playing game Gemstone on GEnie, an early online service. It was a massively multiplayer online role-playing game (MMORPG) that connected people across the country in a virtual world. Eventually, I moved on to more graphical games like the World of Warcraft, but the ability to connect with other people in these worlds was life-changing and even turned into friendships in the real world. One of my groomsmen at my wedding was someone whom I had originally met in an online game.

    My son developed a love for video games at an early age. We had a Wii and loved to play baseball and, especially, bowling. I have videos of him running circles around the house after getting a strike, a huge smile on his face emitting an excited giggle.

    As he got older, we began to play video games together, especially sport games like hockey. We’d adjust the settings to give him an edge, and I’d occasionally have to pull my goalie and allow him to score to keep the game close, but it was a fun way to spend time together doing something that we both enjoyed.

    Eventually, of course, I stopped pulling my goalie and boosting his settings because he got better. Today, he wins more games than me. The grasshopper has become the teacher. And we’ve expanded to other games. We finished the Halo series, one of my all-time favorites. We played MarioKart every night during the pandemic to get three stars on every course. Today, we play Fortnite and Rocket League together, with an occasional session of Minecraft mixed in.

    But I’m not the only one he plays with. This era of powerful PCs and consoles with fast internet has opened up the world and allowed him to play with his friends. He has a friend in Connecticut who plays a baseball video game with him. And he hops on Fortnite after school to play with a few of his friends. Through them, he’s met other friends and he has a little network of gamers. Especially over the summer, it’s helped him stay connected as many families travel and it’s been harder to connect with summer schedules.

    In this world of gamers streaming on platforms like Twitch, he has decided that it is the career he wants to pursue. Whether or not that is a viable path for him, it has been a great way for him to explore many aspects of a traditional career: schedules, consistency, marketing, and engagement. He learns by watching other streamers and then practices engaging with his audience, describing his actions and thought process as he navigates a challenge. He loves to teach the “noobs”2 how to get started and basic tactics and tips.

    As a technologist and a gamer, it’s been fascinating to see how far gaming technology has come. For my son, it’s become a way to connect, express himself, and find his place in a world that hasn’t always made that easy. Watching him game, teach, laugh, and grow through this medium is beyond anything I could have imagined.

    If you want to see what he’s building—and maybe learn a thing or two yourself—you can check out his Twitch stream here: @neurodefender.

    Game on.

    1. Crazy side note, when the Atari 2600 was introduced, it cost $190, equivalent to paying $990 in 2024! ↩︎
    2. Slang for a newbie—someone who is inexperienced or new to a particular activity, especially in gaming or online communities. ↩︎
  • There’s All Kinds of Success

    There’s All Kinds of Success

    I was listening to a recent episode of Adam Grant’s Work/Life podcast where he and author Susan Dominus discussed the psychology of achievement and success. There were a few quotes from the episode that stuck out to me as the parent of a child with special needs.

    I think this idea that parents are burned with, which is that if their child does not succeed in some socially conventional way, that they have not done their job.

    That idea used to live rent-free in my head.

    I thought my job as a parent was to prepare my son for the world—and by “the world,” I meant the conventional path: grade school, high school, college, career. That was the map I followed for the first five years of his life.

    Then he started having seizures. He was diagnosed with epilepsy. And still, I clung to that same definition of success. I believed I could outwork the diagnosis, push through the limitations, and keep him on the traditional track. But the more I pushed, the harder it became—on both of us.

    Eventually, I realized that holding on to that version of success was causing harm. Not just to his progress, but to his spirit—and to our relationship.

    My job is to prepare my son for the world. But first, I have to meet him where he is. Not where society expects him to be. Not where I once hoped he’d be.

    Right here, right now.

    Is it a parent’s job to measure their child’s utility and successfulness in life?

    It is a painful trap to judge our parenting by how well our kids reflect society’s idea of worth. We start to see them as mirrors of our own success or failure. We fear that they won’t measure up if they don’t fit in, if they are awkward, or if they don’t meet the normalized expectations of a traditional education, career, and life. It’s bad enough that, unless you have an extraordinary talent or athletic ability, fit unrealistic expectations of beauty, or have an idea that can make a fortune, you’re already excluded from those seen as the most valuable.

    And more dangerously, we risk not seeing our children at all.

    There’s all kinds of success.

    Success shouldn’t be a single destination. It should be a personal journey—based on who he is, what he loves, and what he’s capable of. My job is not to chart the course, but to walk beside him, to clear the obstacles, and to remind him that his path is valid—even if it doesn’t look like anyone else’s.

    That’s the shift I’ve had to make: from measuring success by milestones to celebrating presence, progress, and personhood. My son may not follow the path I once imagined, but every step he takes on his path is a triumph. And every time I choose to see him—not through the lens of expectation, but through the truth of who he is—I succeed, too.

  • Together, in His World

    Together, in His World

    I stood behind my son in a deep cave. A torch on the wall behind us was the only light, casting our long shadows down the tunnel ahead.

    “What are we looking for?” I asked.

    “Diamonds,” he said.

    We continued forward, using our pickaxes to clear the stone blocks in our path. The deeper we went, the darker it became. Occasionally, we’d hit pockets of lava or veins of redstone. I mostly followed his lead—he knew where to dig, where to place torches, when to mine, and when to run.

    Then I saw movement ahead. I hung a torch on the wall and, when it ignited, I saw a very large spider walking toward us.

    “I hate spiders,” I sighed.

    My son didn’t hesitate. He didn’t flinch. While I stayed back, cautious and reluctant, he moved forward.

    That’s how it’s always been. In these games, in these worlds, he becomes someone else—bold, decisive, brave. He leads with purpose, unburdened by the hesitation that sometimes follows him in the real world.

    I raised my head to see him at his computer, locked in, defeating the red-eyed monster. With the path clear, I looked back down at my iPad, and we pressed on in our quest.

    It had been a while since we had played in the same physical space. Lately, he’s been focusing on his streaming “career,” diligently trying to build an audience on Twitch. He’ll come home from school, finish his homework and chores, head to his room, and close the door.

    I’ll watch his stream. Sometimes he plays with friends. Sometimes alone. Sometimes we play together—but two floors apart, connected only by FaceTime or in-game audio. It’s something, but it’s not the same.

    Today was different.

    Minecraft is one of the few games where he takes the lead. He’s the expert—he builds the world, sets the rules, and guides the mission. He lights up when he shows me what he’s made—a house with hidden doors, a rollercoaster that goes through a mountain, or a massive Captain America shield reaching impossibly high into the sky.

    In the real world, everything takes extra energy. Every day is a challenge that he doesn’t always show. The constant pressure to keep up, to interpret unwritten rules, to manage the invisible toll of his condition—most people wouldn’t notice it, but it’s there. And it wears on him. But in these digital spaces, he’s free. Confident. In control.

    Sitting beside him, I kept glancing up from my screen. I saw how invested he was in keeping me alive, on task, and included. He was unusually chatty, explaining our next steps. His voice was proud. His posture relaxed. He was happy.

    And I was, too.

    We’ve been in a bit of a rut lately—living in separate spaces, our lives occasionally overlapping. I’ve caught myself worrying that the distance is permanent. That the doors he closes might stay that way. It’s easy to panic when that happens. To think it’ll take something big to bring us back together.

    And maybe that fear comes from knowing what distance can become.

    Because that’s what happened to me. I hid in my room, hands on a keyboard, eyes on a screen, building worlds in code. I created that distance—between me and my parents, who didn’t understand me, and my sister, who didn’t want to be around me. In my room, and in that world, it was easier. I was safe. And no one did anything to change it. So the distance became permanent.

    But today reminded me: sometimes it only takes a moment. A small step into his world. A little curiosity. A shared screen. A diamond hunt.

    Not to fix everything, but to find each other again.

  • The Last Baseball Game

    The Last Baseball Game

    The baseball was hit high to right field, where my son was playing. I watched as he tracked the ball and positioned himself under it. His feet were planted. His glove was up. He was ready to make the catch.

    Then, the ball slipped past his glove and bounced off the top of his head.

    There was a moment of panic as he put his hand on his head where the ball had struck. Then, with his hand still on his head, he started chasing the ball.

    The coaches from both teams were calling for the play to stop. The base runners slowed their advance as the coaches and my son’s teammates headed to the outfield. All eyes were on him as his coach checked him out. After a few minutes, they guided him off the field and onto the bench.

    epilepsydad baseball

    That will likely be the last play of my son’s baseball career.

    We knew going into this season that it would likely be my son’s last. He was going to end his career last season, but the opportunity came up for him to play with his best friend, so he decided to play another year.

    And it was a great year. We had one of the best coaches—the same one we had two years ago. The same coach who rushed to the field when my son got hit. The same coach who gave him multiple opportunities to play and even pitch, experiences that my son likely wouldn’t have gotten with anyone else.

    I’ve written a lot about baseball over the years. Although we started as a hockey family, epilepsy and my son’s health had other plans. The stamina and balance required for hockey were challenging, and even with a helmet, a fall to the ice or crashing into the boards was extremely risky.

    Baseball, though, has always had a more manageable pace and physical requirements. In the field, he mostly stood around, and, in between innings, he sat on the bench until it was his time to bat. There were enough kids that he could rest for a few innings on his worst days, but still participate however he was able.

    There were teeball games, back when we were still trying to get his seizures under control, where he’d have a seizure on the field, stand back up, and be ready to make a play. There were games where the side effects of his medication made him wobbly or angry, and we would sit and hold him in the grass to see if it would pass.

    As he got older and his seizures were more controlled, he was able to play more innings. His processing and motor skills were still challenging, but those were awkward years for most of the kids, so he fit right in.

    In the last few years, however, the gap in skill between my son and most of the kids has widened. He still gets hits when even stronger players strike out, and he makes great fielding plays to get an out. His hits don’t go as far, and his throws aren’t as sharp as his teammates’. But still, he shows up, steps onto the field, and enters the batter’s box, ready to do his job and contribute to his team.

    His heart always made up for any gaps in his skills.

    It was his heart that drove him to chase down the ball after taking it off his head. He had a job to do, and he didn’t want to let his team down. While it would be easy to focus on the missed catch, this play best demonstrates who my son is as I think about his time playing baseball. It’s who he has always been.

    Despite his challenges and the odds against him, he shows up.

    He does his best.

    And he never gives up.

    If you like baseball, I’m reading a wonderful book called “Why We Love Baseball” by Joe Posnanski. It’s filled with some of the best plays in baseball, including the story of Jose Canseco taking a ball off the top of his head, too, with an unexpected result.