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.

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.

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.