Tag: family

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.

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.

It’s Bigger on the Outside

My son is nearly 6 feet tall, and from the outside, people don’t expect him to be only 14 years old. They expect him to be more mature and are surprised when the interaction is with a child. Intellectually and emotionally, he’s even younger than his age, so the discrepancy seems even more extreme.

There’s a recurring gag in the television show Doctor Who about his spaceship time machine, the TARDIS. On the outside, the TARDIS is disguised as a police phone booth. When people cross the threshold, they discover that it’s a huge ship, and the usual response is, “It’s bigger on the inside.”

Unlike the TARDIS, my son is bigger on the outside.

I sometimes fall into the same trap, with expectations miscalibrated to his outside appearance. I’ll get frustrated when he doesn’t understand the context or know how to describe or communicate the details of a situation. I’ll get thrown when I assume he sees the same negative intention of the world around us but leads with sweetness and innocence. Inside that tall, slender exterior is my boy, still a child in every way except for the vehicle his kind, wonderful soul travels in.

There is one thing about our son that is bigger on the inside.

His heart.