epilepsy dad

Category: lifestyle

  • 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.

  • A Mindset Change

    A Mindset Change

    A few weeks ago, my tennis coach suggested that I switch to a two-handed backhand.

    Growing up in Florida, I have played tennis for most of my life. However, it was only a few years ago that I started taking lessons. Before that, like most kids, I just figured it out. There was no proper technique, and my swings developed organically to be serviceable enough to get the ball back over the net consistently. Even without a perfect swing, my speed allowed me to cover the court well, resulting in many years of enjoyable, semi-competitive tennis.

    My backhand was my weaker side, but my one-handed swing had a natural slice I could take advantage of by turning it into a drop shot with heavy backspin. It would be difficult for my opponent to react when I hit that shot, especially if they were further back on the court. The downside, however, was that I didn’t have a powerful, controlled backhand to push my opponent, meaning if I didn’t hit the drop shot, they could usually return it.

    After a few years of working on my one-handed backhand, I had improved the power and control and reduced the amount of slice, but the lifetime of muscle memory continued to creep into my swing. Rather than continue fighting against that programming, my coach suggested I try something completely different.

    Switching to the two-handed backhand was like starting from scratch. The grip on the racquet was completely different. My body position and the angle at which I approached the ball changed, and initially, I couldn’t hit the ball cleanly. I would be too close to or too far from the ball, and it would make contact with the frame or neck of the racquet. When I made contact, I launched it off the court or into the net. It felt as if I had never played tennis before.

    After a few minutes, the ball started to carry over the net and land in the court. At first, it seemed random, but then more and more balls landed in. Although not perfect, I had a usable new two-handed backhand by the end of that lesson.

    After years of working on my previous backhand, it seemed strange to make so much progress so quickly. It’s not that my old swing hadn’t improved with the effort, but progress was slow because so much energy was spent unlearning bad habits, which added friction to the process. But with a completely different swing, I had no bad habits to unlearn. I could focus on building something new rather than bending the old way of doing things.

    It is difficult to know when to try to improve what isn’t working or when to stop and try something new. The old way is familiar and comfortable, even if it’s not working. It often feels like an epiphany is right around the corner that will get you over the hump. The sense of progress and a breakthrough always around the corner can be a trap that keeps you on a slow backroad when there is a highway that can get you to your destination faster.

    Part of the mindset change is picking the right destination. When I started, my goal seemed to be improving my existing backhand, but that prescribes a specific solution and limits other possibilities. Instead, my goal should have been to become a better tennis player. That simple mindset change opened up other options to help me reach my goal, including the option to throw away my old backhand and learn a completely new one. That approach took me out of my comfort zone and off those familiar backroads, but I can still see my destination ahead of me, and I’m getting there much faster on the highway.

    The same mindset change works in other environments, too. At work, there are often solutions looking for problems or the wrong problems being chased. Especially when the solution is prescribed by a person of influence, it can be hard to get an organization to stop and consider a change in mindset. Successful companies can ask the right questions and adjust their course.

    The ability to adjust course is also important at home, especially with a child with special needs. Forcing my son to use traditional methods to improve his academics didn’t work, especially if the goal was to have him be successful in a traditional environment. Even if he was making incremental progress with those methods, it was a backroad to a destination we would likely never reach. Instead, exploring other approaches led us to find a school tailored to unique learners, and taking a different approach dramatically improved his reading, comprehension, and math.

    Of course, it’s not always that easy. My son loves hockey and has a personal goal to make it into the NHL, but his physical limitations make that an impossibility, at least as a player. It’s unlikely that any mindset change will give him the balance and stamina he needs to become a proficient skater and player. However, there are many ways to be involved in the NHL, such as as a trainer, coach, or other support staff. There are also ways to play hockey that don’t involve skating, such as ball hockey. In that case, a mindset change helps focus on an achievable destination and opens up a world of options to help reach it.

    If you change the way you look at things, the things you look at change.

    Wayne Dyer
  • 10 Years

    10 Years

    We’re coming up on the 10th anniversary of our son’s first seizure.

    When he was nine years old, we marked the milestone of half of his life being with seizures and half of his life being without seizures. Now, he has lived more than 2/3 of his life so far with seizures. We barely remember a time before.

    When his seizures first started, there were times when we didn’t think we would see another day, never mind another year. The first few years were filled with countless emergency room visits, long hospital stays, extensive therapies, medications, related side effects, special diets, and surgery. Our son was broken down into his basic parts but stayed intact through the love and support of the people around us.

    The next few years were about staying afloat, with a pandemic mixed in because things weren’t hard enough. The seizures never went away. We struggled to find him a school, a community, and friends as he drifted further from his peers in academics and social interactions.

    These past few years, we have gone from staying afloat to building. We moved to the suburbs where we have more space. We found him a school that has accepted him and helped him learn and grow academically and socially. He graduated 8th grade. He has friends. While we don’t know what it will look like, he has a future. For so many years, that was just another “f-word.”

    10 years. 10 years of little sleep, lots of worry and struggle, but also lots of love. 10 years of personal growth to become a better father and husband. 10 years to feel like we might see 10 more years after we weren’t even sure we would get even 1.

    Regardless of what the past 10 years have looked like, I am grateful for each and every one of them.

  • For the First Time in Forever

    For the First Time in Forever

    A few weeks ago, I was sitting on a beach with my wife.

    That, in itself, was not exceptional. We love the ocean and have been on beaches literally around the world. What made it exceptional, though, was that our son was 1,500 miles away.

    This was the first time my wife and I had gone on a vacation without him since our son was born.

    He is 14.

    We’ve spent a night away before. Our son would stay with my parents once they moved to Pennsylvania or with my mother-in-law when she was in town. But only for a night. For many reasons, we weren’t comfortable with him staying longer than that, and we had no one near us with whom we felt comfortable leaving him longer.

    Over the past few years, however, we’ve reconnected with one of my cousins, who is one of the nicest, most amazing people I know and who has developed a wonderful relationship with my son. It makes sense because her mother is also an amazing person. My aunt is a former teacher who taught me cursive and who gave me a dictionary at Christmas when I was 10. That is still one of my favorite gifts I have ever received.

    When we asked my cousin if she would watch our son, she said “yes” without hesitation. My wife and I could barely contain our excitement when we told our agent to book the trip. And while I expected that there would be anxiety leading up to our departure, it turned out to be minimal. Instead, we handled the logistics of medicine schedules and came up with options for things they could do together while we were gone, including a baseball game.

    From leaving for the airport until we walked back in the door, my wife and I could enjoy our trip knowing that our son was in good hands. True to his burgeoning independence, we received minimal texts and FaceTime calls, but they were enough to know that he was safe and happy, giving us space to be alone together for the first time in forever.

    Princess Anna was right.

    For the first time in forever
    There’ll be magic, there’ll be fun

    “For the First Time in Forever“, Disney’s “Frozen”, 2013
  • Milestones

    Milestones

    The Latin is “milia passuum,” meaning a thousand paces. The Romans also erected stone markers at mile intervals to notify the passerby of distances covered or the number of miles to go to reach their destination.

    The Lower Merion Historical Society

    We sat in our chairs among other parents, siblings, grandparents, and friends. The gymnasium was filled with nervous energy as we waited for the ceremony to begin.

    It was a day that we weren’t sure would ever happen. For 10 years, my son struggled with unrelenting seizures, medication side effects, and behavioral issues. After he was stabilized, although never seizure-free, he faced social and intellectual challenges in learning environments tailored for students who were not like him. At the same time, my wife and I fought school districts that seemed motivated to make him disappear. That was until we found his current school.

    For the past 3 years, he was in a place where he belonged. He was in a place that saw him for who he was and celebrated it. He was surrounded by peers on similar journeys and was able to bond, make friendships, and learn. When we received the results of his recent neuropsychology test, it showed progress. He was below his grade level, but there was progress. After his testing a few years ago, the doctors predicted only regression. We started looking at functional schools, assuming the academics would be too challenging. That was until we found his current school.

    As I took it in, Pomp and Circumstance began playing, and the room collectively turned to face the door. Our son, dressed in his blue suit and tie that matched the school colors, led the procession of 8th-grade graduates to the stage.

    I looked at the faces of the families around me in the gym. I listened as they spoke about their experiences with the school and how proud they were of their children for reaching this milestone. My heart swelled as I watched the video the school made, combining pictures and videos of the students being interviewed about what they learned and what they would take away from their experience at the school.

    When it was time to hand out diplomas, I walked to the back of the room and hid behind my camera. I’ve gotten to know many of the graduates and their families, and I knew it would be emotional for everyone.

    There is a tradition at the school where the teachers put together an acrostic poem using each student’s name. As each student stood on the stage, teachers took parts to read. Every line of every poem showed how well they knew each student with a great mix of pride, humor, and recognition.

    My son was the last to the stage. He stood tall as he climbed the steps, but I could tell he was nervous. The anticipation of this day and this moment had been building for weeks. As he stood to the side, the teachers read his poem, which, appropriately, included a Marvel reference. He looked so happy when he received his graduation certificate, and he and his teachers exchanged big, warm hugs.

    And then it was done. Students, faculty, and families came together and filled the gym with love, and pride, and gratitude. I found my son in the crowd and he fell into my arms as I gave him a long hug. My wife came over and we all embraced and shared the moment as a family.

    There are milestones and there are MILESTONES, and this was definitely the latter. It is a moment set in stone to let us know how far we have come along our journey, even if we don’t know how far we have to go.