Category: technology

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.

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.

A Year With The VNS

Last December marked the one-year anniversary of my son’s VNS surgery.

Leading up to the surgery, I was a wreck. The week before, I had to give a preview of a presentation to one of our executives. I was not present and I stumbled through, relying heavily on the notes that I threw together on a handful of index cards. A few weeks later, my boss commented that she noticed how off I was. “You’re normally so put together. I don’t know what happened.” I did, I thought. My son was about to have surgery.

As I wrote about when we were contemplating the VNS, there is something about a surgery that is so daunting. With medications or the ketogenic diet, we can stop them if they aren’t working and the side effects eventually go away. But you can’t “uncut” my child. Once the scalpel breaks the skin, that’s it. It’s done. Even if the VNS is turned off or if the leads are removed, there is no going back. That thought weighed heavily on my mind right up to when they wheeled him back to the operating room.

Thankfully, we are near one of the best children’s hospitals in the country, and the surgery went smoothly. The device was turned on a few weeks later, and the waiting game began.

For the first six months, I didn’t expect much of anything to happen, which was great because not much of anything happened. Except for the vibration in his voice from the tingle of the VNS and the two visible scars, there was no change.  We didn’t see any reduction in seizures, even as the doctors adjusted the intensity and frequency of the pulses.

At nine months, there was more of the same. His vocal cords seemed to adjust and his vibrato was less pronounced, but I could still hear it. Again, though, there was no seizure reduction.

A year after his VNS surgery, I would love to write that it took a year for the VNS to really start helping my son. I would love to write that he is seizure-free and that we were able to wean him off the ketogenic diet or remove a few pills from the handfuls of pills he takes every day. I would love to write that I sleep any better knowing that the VNS will protect my son from a catastrophic seizure and that I sleep much better at night.

But I can’t.

The obvious question is, knowing what I know now, would I have still gone through with the surgery?

The short answer is yes. The VNS helps a lot of people. At the time, we didn’t know whether it would work and I was and still am willing to try anything to reduce or prevent my son’s seizures. I’m disappointed that it didn’t do more for him, but it was worth trying.

Maybe someday it will help. Maybe it is already helping with seizures that we can’t see, or maybe it will someday prevent a really bad seizure.