epilepsy dad

Tag: life

  • Discovering What’s Next

    Discovering What’s Next

    Our son is officially a 9th grader, adding to our list of milestones and events we weren’t sure we would see.

    We are very fortunate to be able to start high school in the best way possible. The school he has been at since 6th grade offers a transition year, which we are taking advantage of with the support of our school district. That means he will have the same teachers, peers, and environment to continue his journey for another year. Especially with the looming surgery, recovery time, and uncertainty with his tolerance for calibrating the brain stimulator, keeping him in a place where he is comfortable and cared for is a gift.

    This is going to be a year of changes. Unless higher grades magically appear, this will be his last year at the school, and his peers who have been concentrated at his school will find high schools in their home districts. This will likely be his last year of baseball, as the level of play and competition at the next level may not be something he can manage. His peers will get their learner’s permits and start driving, something he won’t be able to do while he is still having seizures.

    No one knows what is on the other side of these changes. I am sure he will find friends among his new peers and that other interests will replace baseball. While he won’t learn to drive with his peers, there will be other rights of passage to conquer and other ways to grow.

    But many of these changes are still on the horizon. He has 9th grade to look forward to and another baseball season. He has his school, teachers, peers, and friends. He has and will always have his family. And together, we can navigate these changes and discover what’s next.

  • Making It Up As He Goes Along

    Making It Up As He Goes Along

    For as long as I can remember, my son has struggled with his memory. Whether it’s his school day or details about anything in the past, when we ask him about it, he doesn’t remember, or his answers are vague or confusing.

    If we ask him about a choice or why he did something, he usually says, “I don’t know” or “I don’t remember.” He’ll also say “yes” to most leading questions because he thinks it’s the right answer or what we want him to say. Or he’ll answer with reasons he might think of when we ask him the question rather than those that were more relevant at the time. It’s like applying hindsight to make sense of a choice made in the past, even though the information on hand now wasn’t available when the choice was made. Sometimes, it seems like he just makes it up as he goes along.

    I assumed this condition was related to his epilepsy or the side effects of his medications. Perhaps the same factors that cause his generalized seizures also affect his brain’s ability to process and store information.

    The other day, I was listening to a Fresh Air interview with Dr. Theodore Schwartz, a neurosurgeon who wrote a book called Gray Matters. In the interview, Dr. Schwartz described how the brain makes decisions, and it sounded like what happens to my son.

    And then what studies have shown is that a person will behave in a particular way based on something that’s unconsciously being processed in their mind.

    And if you ask them, why did you do that? Why did you behave that way? They will make up a story to make sense of it based on something else that’s going on around them.

    And it makes you realize that often a lot of our behaviors are done in an unconscious way, and we make up a story afterwards to try to make sense of why we did what we did. You can stimulate the brain and make someone turn their head from the right to the left. And if you say, well, why did you turn your head?

    They say, well, I was just looking for my shoes. I lost my pencil or something. And they will create agency where no agency exists.

    And so over time, you realize that the idea of the self and the idea of a unified self and the idea of making certain decisions that we think we’re in charge of, probably doesn’t happen in the way that you think it does.

    From Fresh Air: A Brain Surgeon Opens Up About Life In The O.R., Aug 5, 2024

    Our son’s subconscious seems to control many of his decisions, more than a typical teenager. That helps explain why he can’t remember the reason for making a decision, his struggles with impulse control, and his ability to always think through the consequences before taking action.

    The interview made me think about how we’re handling our son’s condition. How can we influence now to help his subconscious make good, safe decisions in the future?

    Over the years, we’ve learned to patiently navigate the maze of his memory to get an answer, trying to extract the subconscious reasoning and make it conscious with the hope that the process influences his subconscious the next time he encounters a similar situation. That way, even if he doesn’t always remember the reasons when thinking back, we can help make his subconscious reaction the right one.

    Obviously, it’s impossible to predict every decision that he will need to make in his life, but I hope that by continuing to train his subconscious with the decisions he is making today, his brain will generalize that training and apply it to related decisions in the future. When his subconscious takes over, it can at least draw from existing associations between reasons and good choices and apply them to that situation.

    There’s no guarantee that it will work or to what degree, but we’re all just making it up as we go along.

  • Imagine That

    Imagine That

    A few weeks ago, we went to three concerts in five days.

    The first concert was REO Speedwagon and Train. What might seem like an odd mix was incredibly entertaining. My wife also has connections with both bands. When she was little, her family stayed with the lead singer of REO for a few months in California. My mother-in-law and the lead singer’s wife were friends, and when my wife’s family needed a place to stay, they landed in the guest room of one of the hottest bands at the time. With Train, at a small show a few years ago, my wife found herself on stage singing with the band.

    Wild.

    The second concert was the following night. It was my wife’s band that she joined a few months back, and we’ve been lucky to see almost all of her shows. It’s an incredible feeling to see her back on stage where she belongs doing what she love and is so good at.

    The third concert was Imagine Dragons. Our son has wanted to see them for years, but we missed their last show in Pennsylvania. This year, they released a new album and, with that, began a new tour. This tour’s first stop was across the river in New Jersey, so we got tickets as soon as they went on sale.

    My son counted down the months, then weeks, then days, and finally hours until the show. The day before, he wrote a letter to the band that he asked me to send to them.

    The day of the concert, we agreed to a game plan that would start as soon as we walked into the venue:

    1. Go to the merchandise table and get t-shirts.
    2. Put on t-shirts.
    3. Get food.
    4. Sit down.
    5. Eat.
    6. Rock out.

    We breezed through the first three steps and sat in our seats as the crew was changing over the stage after the opening band. The venue was packed with amazing energy, and every time one of the screens turned on, there was a surge of excitement until we collectively realized it was another commercial.

    Finally, the lights went down. The screens lit up with an image from the new album “Loom” and a recorded poem played over the speakers.

    Through distant lens, I see your shrouded form
    It carries there through some fervent storm
    Its promise neither wilt nor rapture bloom
    But only that it will not fade
    It looms…

    My son spent the first part of the show with his phone in his hand, trying to capture every moment as the band performed. I could see him taking in the experience as he sang at the top of his lungs. It was as if the band did the show just for our son, playing all of his favorite songs.

    I love watching him be so engaged and happy. With all his struggles, past and present, I am grateful that we can give him experiences like this. The looming surgery reminds me not to take the time we have for granted. As too many people know in this community, it can all end too soon.

    Of all the concerts I have seen, this was one of my favorites. Not just for the band and their performance but for the joy I saw on my son’s face. It was made even more special that we experienced it with our expanded family member, who was attending one of her first concerts. Watching the two of them sing and dance for the entire show was worth the price of admission.

  • And Then There Were Six

    And Then There Were Six

    I always imagined that I would have a bigger family. When my friends started having children, I saw the joy each baby brought into the world and wanted to fill our house with a family of our own.

    The birth of our son was one of the greatest moments in my life, even though it was also one of the scariest. A doctor’s visit turned into an emergency C-section later that day, and my first moment as a father was standing in the operating room in scrubs, clutching my camera, watching as they lifted my son from behind a privacy screen.

    That was during a SARS pandemic in the middle of a Colorado blizzard.

    Even with the dramatic start to our family, I was ready to do it again once we found our footing as new parents. But then came postpartum depression. Then came the stress and pressure placed on a new couple that barely had time being married before they became parents. Then came the seizures. Then, it was taken out of our hands with a partial hysterectomy to remove a mass.

    Everything about our plans for the future changed. Those were hard times, especially for my wife, both physically and emotionally. The idea of a big family was gone, but not having another child allowed us to focus on saving the one we did have. It also allowed us to work on healing ourselves and finding our way back to each other. The struggle and the journey led us to the amazing family we do have.

    We added our son’s service dog to our family a few years ago and another poodle to the unit last year. These additions did wonders for our son’s expressions of empathy and compassion as he learned to connect with other living creatures. Although not quite a sibling, our son still formed a close relationship with them that continues to deepen.

    This summer, we welcomed a new, if only temporary, member into our home. One of my wife’s former students, who has her own challenges, came to stay with us. While the change of environment, I think, has been beneficial for her, her presence has also had a noticeable difference for our son and our entire family.

    Even before her arrival, my son was thinking of ways to make her feel at home. He helped get the house ready, created the “Welcome” sign we held when we picked her up from the airport and gave her space and attention as she adjusted to her new environment.

    She is a few years older than our son, but she understands him. They’ve found ways to interact, whether it’s playing Minecraft or chess together or her watching him play basketball or hockey in the driveway. She’s patient as he tries to explain how to shoot the ball or swing a hockey stick, giving him someone to interact with rather than being isolated on his electronics.

    Her presence was a catalyst for changes we struggled to make as a family stuck in our routines. We’re eating more meals together and having conversations at the dinner table. We’re experiencing the excitement of giving her a few firsts, or firsts in a while, going to baseball games and concerts, and including her in our family rituals.

    With the challenges our son and our family faced years ago, we couldn’t have done this then, or it would have been a much different experience. There is a reason this is happening now, both for us and for her. I’m grateful for the changes I see in our son and our expanded family.

    For however long it lasts.

  • 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.