epilepsy dad

Tag: behavior

  • 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.

  • It Looks Like Rain

    It Looks Like Rain

    When my son was at his worst, with relentless seizures and medicine flooding his body, he wasn’t our boy. He was uncontrollable and so, so angry. He would have fits for hours where he would try to hurt us and say terrible things. We’d spend those hours holding him, telling him that we love him, and waiting for the storm to pass.

    There were long stretches of weeks where we would only see glimmers of the boy that he was, like a break in the clouds. But, inevitably, the clouds would expand, find each other, and hide the light behind them.

    After too many months, the enormous storm that ravaged our lives started to break up. The seizures were more under control and we were able to reduce his medications to only a handful. We sought counseling for dealing with his condition and with each other. With a lot of hard work, we had more breaks in the clouds, more times where we saw the light from our boy shining on our lives.

    We spent a lot of time basking in that light. We were starved for it after so much time without it. There were still rumbles in the distance, a seizure or an outburst, that made the hair on our necks stand up. Occasionally, a storm would pop up, but it was usually brief and not as violent. Still, we remained on guard.

    Lately, the sound of thunder is getting louder.The hairs on my neck are standing up again. We’re seeing the tell-tale signs of a storm. There are times when he can’t control his body or regulate his emotions. There are days when he’s not there and when he’s not processing and not aware. There are more times when he gets angry and pushes everyone away. We’re adjusting his medicine again and these signs act as our barometer that tells us when the dose is too high.

    I know we have to adjust his medicine to keep the seizures in check, but I also know what that brings with it. I can see the clouds forming. It looks like rain.

  • We All Make Mistakes

    We All Make Mistakes

    When I was growing up, there was a family across the street from us that had two boys. One was my age, the other a little older, and they were both part of our neighborhood pack that would play baseball and football in the street, ride around on our bikes, or simply hang out in one of our yards. The younger boy and I, being closer in age, also shared an affinity for computers. His powerful Amiga had better games, so we would spend time at his house playing them, often for hours at a time.

    I remember their dad being really strict. They would address him as “sir” and had to ask his permission for everything, from a can of coke to going outside to play. I could often see a look of fear on their faces when they interacted with their father, and I never knew what that was about until one day when my friend took a soda without asking. We were in the front room on the computer, and his father dragged him to the back of the house. As I sat there, I could hear my friend apologizing through the muffled sobs that echoed down the hallway. I heard the unbuckling of a belt followed by the crack of a whip and then more cries. After a few minutes, there was silence. My friend returned to the front of the house and told me that he couldn’t use the computer anymore and that I had to leave. His eyes were still wet. I couldn’t see him, but I knew my friend’s dad was listening, just out of eyesight. I stood up and left quietly.

    I was probably thirteen when that happened and, in the years that followed, I watched as my friend continued to wrestle with his relationship with his dad. I could see it worn on his face, but he often shared how he desperately tried to please his father but always seemed to come up short. It was his failure, he would say, and not the unrealistic or inappropriate expectations of his father. I could see him starting to respond more with his own anger. His grades went down, which only made things worse between him and his father. He started to pull away, hanging out with different friends, until I stopped seeing him altogether.

    After I moved away, my mother would occasionally give me updates. Unsurprisingly, my friend turned to drugs in high school. I’m not sure if he graduated, but this bright kid who could have done amazing things with computers burned out and gave up. My mother would see him every once in a while, usually at his father’s house after another stay at rehab. She said he was always polite, calling my parents “Mr.” and “Mrs.”. Each time, I would hope that he had finally sorted his life out, even as I wondered why he kept returning to the place that likely was the catalyst for the direction his life had taken.

    As much as I hoped his life would take a different path, it never did. He was 33 when he died of an overdose. I couldn’t help but think that his death was the finally, unforgivable mistake that he would ever make and that it was the last in a long line of disappointments to his father. My friend spent his life never feeling like he could please his father. And then it was over.

    I haven’t spoken to him since, but I sometimes think about my friend’s father. I wonder if he feels any responsibility for what happened. I wonder if he would change the past and how he treated his son. Sometimes, I wonder if I am making my son feel the same way.

    The other night as I was putting him to sleep, my son said that he was sorry for making so many mistakes. It was a gut punch that came out of nowhere. My chest tightened up. I thought of my friend and his dad and I didn’t know how to respond. His comment was like an arrow that struck the bullseye of my greatest insecurity.

    I feel like I’m always riding my son. Sometimes, it’s for normal mistakes that kids are supposed to make. Other times, it’s for things he can’t control because of the side effects of his medicine or seizures, or other complications caused by his condition. He struggles with attention and impulse control issues every day and, as hard as that must be for him, it must be even worse because I am constantly saying “no” and making him feel like he is always doing something wrong. I push him towards perfection because I think it will make his life easier if he can overcome his obstacles, but I am setting extremely unrealistic and unachievable expectations and setting him up for failure. And so I found myself lying next to my six-year-old who is apologizing for being a kid…and human. I don’t need to raise my hand like my neighbor’s father did to do the same type of damage.

    I reached out and put my hand on my son’s shoulder. “We all make mistakes, buddy. It’s a part of learning and growing. If we didn’t make any mistakes, then we wouldn’t learn anything new. I make mistakes all the time. I must have made a hundred mistakes today.”

    He rolled over and turned to me. “You did?”, he asked. “Like what?”

    I laid down next to him and draped my arm over his shoulder. “Well, ” I said, and then I told him about the mistakes that I made during the day. I told him about what I learned from making them and that I was happy that I learned something new. We talked for a while (there were a lot of opportunities to learn and grow that day) until I saw his eyes get heavy.  As he drifted off to sleep, I hoped that by sharing my own mistakes, he would see that everyone makes them and not feel so defeated. It was also an opportunity for me to reflect on those mistakes that I made, including how I responded to my son, so that I, too, could forgive myself, and learn, and grow.

    My wife had a great idea and I think we are going to start doing it. We have a nightly routine where we talk about out day…something good, something bad, something we are grateful for. We are going to add a mistake that we did today and what we learned.

    And then we’re going to celebrate it.

    epilepsy dad make mistakes

  • The Long Walk Home

    The Long Walk Home

    It was one of those nights when we had to decide between bringing him to his teeball practice or letting him skip it and rest. During the previous week, we had just gotten him back up to a functional dose of his medicine that once again helped stop his daytime seizures. But, after almost of week without them, the nighttime seizures returned. That day, he was spacey, and just “off”, which brought us to having to make this choice. Should we let him go play and do something that he hasn’t stopped talking about the entire week and risk him getting exhausted and more likely to have a seizure? Or should we keep him home, let him rest, and miss out on yet another activity?

    Some nights, the decision is easier. If he had a day of seizures, or if his behavior was off, or if he had those big, puffy, purple circles under his eyes, he would stay home. Or, if he had a great day, and a great nap, it would be an easy choice to head to the field.

    But on the in between nights, it’s hard to know what to do or what the repercussions might be. It’s like picking the mystery box in a game show. He could pep up and participate or he could lose complete focus and throw baseballs over the fence or somersault across the field.  We decided to open the mystery box and take our chances.

    With being tired and being surrounded by a gaggle of excited peers, there were a few moments where we had to remind him to stay focused, but overall he did great. Until, that is, towards the end of practice where he had a great hit but was tagged out. He insisted that he was safe, but he was not (by a mile), and what should have been a short discussion turned in to a battle and a long walk home.

    He cried the entire way. There was no reasoning, and no real comforting. He was tired, and done, and he just wanted to cry. So we let him. My wife pushed the stroller and I carried the teeball bag on my back. We would occasionally tell him that we loved him, and that we were sorry he was so sad, but we mostly let him cry, his head tucked in his hands or his baseball hat, as the tears rolled down his face.

    When we got home, sniffling, he pulled himself out of the stroller, walked up the steps in to the house, and fell on the couch, crying as I helped him take off his shoes and jersey. I again reassured him, rubbing his head and kissing his forehead. As I started to stand, he calmed down and asked me to sit next to him, which I did.

    We are not strangers to these long walks home. Last year, they were angrier, with hitting, and spitting, and mean, angry words coming from a crying five-year old. There were days where he would stick his feet in the wheels and laugh, or jump out of the stroller and try to run away. There were attempted trips to the museum or the park that would end before they began with us turning around after only a block or two from our home. It’s hard when the threat of a thunderstorm looms over every outing and every activity. But better the risk of a long walk home after doing something than never leaving the house.

     

     

  • Actually, My Son Is Not “Fine”. But He Is Amazing.

    Actually, My Son Is Not “Fine”. But He Is Amazing.

    I spoke with an administrator at my son’s school, talking about how the year was going so far, asking about how the replacement for his one-on-one was going, and just generally checking in. The administrator said that my son seemed to be doing “fine”.

    “Actually, ” I said, “he’s not fine. He has epilepsy. Some mornings, he has seizures. Then we give him his anti-epileptic medicine and try to help him keep his attention focused long enough to get dressed for school. Luckily on most days now, he can stomach breakfast. The diet that he is on is really hard on him, but hey, it helps with his seizures. Then he walks or, on good days, rides his scooter a few blocks to school. We’re grateful that the short trip doesn’t tire him out as much as it used to when school first started. Then we drop him off in to a class that has 29 kids and hope that his one-on-one (when he had one) cares enough that day to help him focus on his class work and hopefully pay attention long enough to pick up what is being taught that day. He can’t follow more than one direction at a time, and it takes an enormous amount of energy to stay focused for that long. By mid-morning, his brain is already exhausted and his body starts to follow, but he makes it to lunch, where he usually just watches his classmates eat. Recess, though, is his favorite part of the day, where he can play with his classmates with whatever energy he has left, although I think he usually wills himself to fake having energy so that he can just be with other kids. Then he packs up, heads home, has a small snack before his body and mind give up and he has to take a nap, just so he can wake up and make it the rest of the day. That’s not what I call fine.”

    The administrator was caught off guard by my rebuttal. “I just meant that academically he seems to be where he should be.”

    “He’s doing well academically because after he wakes up from his nap, our nanny reads and works with him to help reinforce what we’re hoping he’s learning in class and missing from the afternoon sessions. By the time I get home from work, he’s usually exhausted mentally again, but we get to play while dinner is in the oven. Well, unless it’s our night to go to behavior therapy. After dinner, we pop him full of pills again, head to bed, and then repeat the process for the foreseeable future.”

    I don’t blame the administrator. He only catches glimpses of my son throughout the day. With other disabilities, there might be some external indication that a child is different, but with epilepsy and its related complications, you may not catch the signs unless you have a reference, or spend enough time with a child, or happen to catch a seizure. But while I don’t blame him, I also wanted to dissuade him from thinking that my son was just another kid and, just because he wasn’t seizing at school, that he was “fine”.

    “Fine”. “Fine” doesn’t reflect the struggle he has to keep control of his body. “Fine” doesn’t show the foggy side effects of his anti-seizure medicine that clouds his brain, or the complicated, restricted diet that sometimes turns his stomach. “Fine” doesn’t capture how hard he has to work to stay focused or follow direction or put things in sequential order. “Fine” doesn’t get the help he needs at school so that he can try to keep up with the kids that aren’t filled with brain-altering drugs or seizing every day. “Fine” doesn’t convey how difficult it is for my son to make it through the day.

    And yet, he does.

    No, my son is not “fine.” But he is amazing.