epilepsy dad

Tag: fatherhood

  • What Matters is the Repair

    What Matters is the Repair

    Hello, Hindsight, my old friend.
    You’ve come to talk to me again.
    Because a mistake I made today
    Left its mark and pushed someone away
    And the shame that was planted in my brain
    Still remains
    With the sounds of silence

    On more than one occasion, my response to an action that my son did was out of proportion to the action itself. Usually, it’s because he repeated the same action, and there is an escalation of consequences. But sometimes, it’s driven by my trauma, insecurities, and fear about my son’s future.

    A few weeks ago, there was the Chocolate Bar Incident that I wrote about in a previous post that involved him lying about sneaking candy. The candy wasn’t the issue; the lying was, and it triggered a knee-jerk reaction to take away his electronics “for I don’t know how long.”

    I was so frustrated with his lying, and I didn’t understand why he was doing it. I had a hard childhood, and I feared that he was lying the same way that I lied because he felt unsafe like I did. I was also afraid that it was because of his impulse control and executive functioning issues. I needed to shock him with extreme consequences to change his behavior and stop him from lying. Otherwise, how could he go out into the world?

    Like I said…out of proportion.

    After I had time to cool off, I felt terrible. Yes, he struggles with impulse control and executive functioning, but so do a lot of people. Also, teenagers lie. It’s normal and doesn’t necessarily reflect on his future possibilities.

    I thought about how I responded and how I should have responded and felt like an asshole. Feelings of guilt and shame washed over me, and I feared that my response would be what stuck with him about this situation and that it would affect or define our relationship.

    I went in to apologize. I shared why I had my reaction, explaining how I was afraid he was having the same childhood and experiences that I did. That fear and projection about his future triggered my response because I wanted to change his path so that he didn’t have to endure the same challenges that I did. But I understand that wasn’t what was happening; it just looked the same. I told him I was sorry, and he accepted my apology like the sweet, kind, empathetic boy that he is.

    That, I am learning, is what will define our relationship. What matters isn’t the mistake. What matters is the repair.

    We all make mistakes. As much as we wish we could be perfect in our relationships, we’re human, which means we’ll stumble, say the wrong thing, or make a bad choice occasionally. Whether it’s a moment of lost patience, a misunderstanding, or a decision we wish we could take back, mistakes are inevitable. But here’s the thing: what matters most isn’t the mistake itself—it’s what happens afterward. The repair is what truly defines the strength and depth of a relationship.

    When we mess up, there’s often a sense of failure or shame that comes along with it. We worry we’ve damaged trust or created distance in the relationship. But the reality is that the most meaningful connections aren’t the ones that never face difficulty. They’re the ones that grow and evolve through those moments. It’s the repair process—the act of acknowledging the hurt, making amends, and working to rebuild trust—that ultimately makes relationships stronger.

    At the end of the day, it’s not the mistakes that define us—it’s what we do after them. We all face moments where we wish we had done things differently, but those moments can lead to greater understanding and intimacy if we approach them with humility and care.

    Our children don’t need perfect parents; they need parents who are real, who are trying, and who are willing to own their mistakes. Children learn more from our willingness to grow than from our attempts to be flawless. When they see us apologize, try again, and love them through the messy parts of life, they learn resilience, empathy, and the value of authentic connection.

  • Dream Big

    Dream Big

    The other day, I was driving my son to music camp. The camp was at the same place where he takes his drum lessons but, rather than private lessons, the camp groups the kids into bands that perform at the end of the week.

    When I asked my son if he liked the band experience, I expected his response to involve the difference between lessons and performing or what it is like to play with other musicians. Instead, his response centered around wondering if he would get on the Wall of Fame that the school had of previous students.

    I wasn’t entirely surprised by his response. Very often, his goals involve a championship. When we talk about hockey, he wants his name to be on the Stanley Cup. When we play Fortnite, he wants to be on the leaderboard or have his own skin like the influencers have. He talks about subscribers and likes for his Twitch feed and YouTube channel.

    As a kid, I remember being young and obsessed with getting my initials on every video game I touched to leave my mark on everyone who would play the game after me. At one point, my initials filled the high score screen of a game called Mr. Do that I played every day while waiting for the school bus.

    I played basketball in the driveway and imagined the next shot was a buzzer-beater to win the championship, and I tossed balls in the air and pretended that I faced a full count and needed a hit to win the game. Creating the ultimate clutch scenario and delivering is the dream of many would-be heroes, even those of us who were not destined for sports greatness. It added drama to a sport or game that I loved to play.

    I’ve heard interviews with professional athletes who had the same dreams, except they focused on achieving them. Even at a young age, they would spend hours working on their game, taking slap shots, making free throws, or swinging a bat. They aimed to become a professional athlete and help a team win a championship by delivering in that clutch moment.

    Whether it’s video games, sports, or music, that desire to be the best can be a great motivator. But what happens when achieving that dream becomes the bar? What if whether a dream is achieved becomes the only measure of worth?

    I love that my son has big dreams. For everything he has been through and everything he struggles with daily, he could have just as easily become a victim of his situation and have no dreams at all. But I’m afraid that if he doesn’t achieve his dream, he will resent the experience rather than be proud of himself for what he did accomplish.

    I realize those are my feelings and may not be his. It breaks my heart that his chances of playing in the NHL are minuscule, and because I’m disappointed for him, I’m expecting him to be disappointed, too. But my feelings are based on my frustration and anger at what his condition has taken from him, which probably results in a higher degree of disappointment, just like it results in a higher degree of admiration for what he can accomplish.

    Ultimately, my job as his parent is to let him have his dreams and make it okay, whether he achieves them or not. My job is to instill in him the ability to be proud of himself for his accomplishments and to encourage him to love the experience, the sport, and the time he could do what he enjoys. It’s my job to show him that there is a sense of accomplishment in doing something and then working at it to improve and become the best you can be, even if it doesn’t come with a trophy or picture on a wall.

    I’m a big believer in dreaming. If you don’t dream it, you can’t become it. – Magic Johnson

    Dream big, pal.

  • Sneaky

    For a while, I’ve been thinking that Apple’s Parental Controls were poorly implemented. We would set the controls, and then within a few days or weeks, we would see them change.

    As an engineer, I set out to troubleshoot the problem. At first, I thought it was because our son has two devices. Perhaps the changes weren’t propagating to one of them, and that device was corrupting the settings. But even after I ensured both devices matched, the setting would change again after a few days.

    One day, my wife casually mentioned giving my son her phone because he needed to “check something.” That’s when we figured out he had convinced my wife to let him use her phone and was changing the settings.

    Sneaky.

    Once we figured that out, we sat him down and told him what we learned. We covered issues with trust, money (Apple’s refund policy for something like this is less than generous), responsibility, and consequences. We took away his devices for almost a week, and when he got them back, we didn’t encounter any issues.

    For a while.

    The other day, my son said, “Dad, I like your drawings.” I’ve been drawing on my iPad, which I leave downstairs in the living room. He knows my passcode but not the parental control code. We chatted about respecting people’s privacy and boundaries and not using my iPad without asking, and I left it at that.

    A few days later, I discovered that the parental control settings had changed again. As I went in to fix all the settings, I realized that once you unlock the iPad, it didn’t require the parental code to turn off the parental controls. You can turn off the parental controls with the device’s passcode, which my son knew.

    When my son saw my drawings on my iPad, he was on it to disable the parental control code. His mention of my drawings turned out to be his undoing,

    Sneaky.

    Controlling his impulses and urges is hard enough for him as a teenager. My son’s intellectual and emotional challenges mean that the process will take more time. We’ve been at this long enough to understand that it’s not a flip that we will switch; it’s a gradual undimming until the light is at its full brightness.

    As we talked to him about these choices and the consequences, I felt conflicted. His ability to troubleshoot the problem he was facing and come up with multiple solutions is actually impressive. I know engineers with less tenacity and creativity. Using that ability to be sneaky and violate our rules, however, is the wrong expression of those skills.

    Our job as parents is to help him use his power for good.

  • It’s Bigger on the Outside

    It’s Bigger on the Outside

    My son is nearly 6 feet tall, and from the outside, people don’t expect him to be only 14 years old. They expect him to be more mature and are surprised when the interaction is with a child. Intellectually and emotionally, he’s even younger than his age, so the discrepancy seems even more extreme.

    There’s a recurring gag in the television show Doctor Who about his spaceship time machine, the TARDIS. On the outside, the TARDIS is disguised as a police phone booth. When people cross the threshold, they discover that it’s a huge ship, and the usual response is, “It’s bigger on the inside.”

    Unlike the TARDIS, my son is bigger on the outside.

    I sometimes fall into the same trap, with expectations miscalibrated to his outside appearance. I’ll get frustrated when he doesn’t understand the context or know how to describe or communicate the details of a situation. I’ll get thrown when I assume he sees the same negative intention of the world around us but leads with sweetness and innocence. Inside that tall, slender exterior is my boy, still a child in every way except for the vehicle his kind, wonderful soul travels in.

    There is one thing about our son that is bigger on the inside.

    His heart.

  • Executive (Dys)function

    Executive (Dys)function

    We’re probably those parents who have relied too much on technology while raising our son. Between the hospital stays, appointments, and sick days, we have spent a lot of time waiting. There have also been days where our son was too mentally or physically tired to do anything else, so we’d hand him one of our phones. Eventually, my wife and I also got bored sitting around with nothing to do. We also struggled with the reality and stresses of our complicated life and equally needed a way to escape, so we bought our son an iPad so we could disappear into our phones.

    In the beginning, leaning on technology served a purpose. It was a portable distraction that helped pass the time. By the time our son had fewer appointments and more good days, the habit of reaching for a device was automatic.

    The pandemic didn’t help. We played a lot of UNO and other board games, drawing, and finding ways to interact, but it felt like a lot of hours to fill, so we fell into our default of electronics.

    I’d often look up from my phone and see both my son and my wife firmly fixated on their devices. We were alone, together.

    As he got older, we would occasionally review his device usage to ensure he wasn’t doing anything inappropriate, but we didn’t use the parental controls or other settings to limit his access or screen time. Any time we would try, largely driven a realization that he was addicted to his devices, he would get sick or we’d find a reason why he needed his device, so we would remove the limits.

    When our son started puberty, we began to notice our son being more secretive about his device usage. When we investigated, we found that he was looking at inappropriate sites. As we looked into it, between his ADHD and issues with executive functioning, we also saw that he was having a hard time regulating and controlling his impulses.

    On more than one occasion, after we turned on parental controls, we would see a receipt for purchases he had made after disabling the “Ask to Purchase” feature. He would also bypass the content restrictions to download inappropriate apps and visit adult websites.

    Each time it happened, we’d sit down with him and have a conversation about rules and consequences. But, in many ways, it was like trying to rationalize with an addict. Worse, his struggles with attention and processing and our flexibility on the enforcement of the controls only set him up to fail. A few weeks ago, I saw another receipt for $200 worth of purchases in my inbox, including charges for apps that he knew were off-limits.

    This time, the conversation was different. We could see the struggle he was having to resist the urge to bypass the parental controls. It’s like when enough time passes and any previous consequences from the last incident has faded, his brain can’t make the right choice. The league of screen addiction, ADHD, and executive processing and decision making issues are simply too much to overcome.

    There are a number of studies detailing the impact of electronics on children, specifically as it relates to executive functioning and decision making, including “Less screen time, and more physical activity associated with executive function“, “Mobile Technology Use and Its Association With Executive Functioning in Healthy Young Adults” and “Addictive use of digital devices in young children: Associations with delay discounting, self-control and academic performance.” Many of the studies are on healthy children without the additional complexities that our son has, which can only exacerbate the impact on his developing brain.

    We tried to explain the situation to him in a way without shame by taking our responsibility for not providing more structure on his screen usage. We also let him know that these struggles are normal for children his age and that it’s our job as his parents to help him navigate this time in his life.

    Executive functioning, impulse control, and decision making are like muscles. A muscle doesn’t grow bigger unless you make it work hard, and you make this muscle work hard by having consequences, both good and bad. Historically, our negative consequences haven’t been very heavy, and that muscle hasn’t been strained. This time, we swapped in a heavy weight by taking away his devices completely for a few days. It was interesting to watch his attitude and awareness during that time, as both seemed to improve.

    When we gave him back his devices, we include time limits to help wean him off his dependence on them for entertainment and to pass time. Spending more time in the real world is where he can flex those muscles to help him continue to learn how to successfully live in the real world.