behavior Archives - Epilepsy Dad

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

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

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.