August 2024 - Epilepsy Dad

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:

Go to the merchandise table and get t-shirts.
Put on t-shirts.
Get food.
Sit down.
Eat.
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

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.