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.

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.