Category: parenting

There Is No Blue Wire

We don’t really know how long our son was in status epilepticus.

We had moved to a new city only six months before, around the time when my son had his first seizure. He had his second a few months later, which lit a fuse inside his brain. We started to see more “ticks”. I didn’t think anything about them, at first, because they looked very different from the seizures we saw. But he started having more of them. The fuse was burning and it was quickly reaching the explosives.

In movies, when a hero defuses a bomb, it’s very dramatic. She’s on the radio with the experts who are talking her through the process.

“Take off the cover.”

Our hero unscrews the cover, exposing a spaghetti of wires. “Done,” she says. “I see the wires.”

“Now, “ a voice says through her earpiece, “carefully trace the wires back to their source. You should see a control board with a power source.”

Our hero uses the back of her hand to wipe the sweat from her brow. She squints her eyes as she uses the screwdriver to carefully push wires out of the way to reveal a circuit board with a series of glowing lights.

“Done. I see the board, ” she confirms.

“Ok, coming off the back of the board you should see a red wire and a blue wire. You need to cut the blue wire.”

Our here slowly grabs the wire cutters from her pocket. In her left hand, she uses the screwdriver to push back the wires further. As she starts to weave the wire cutters into position with her right hand, she stops.

In movies, when a hero defuses a bomb, there is a blue wire. In our story, there was no blue wire. The spark ignited. The bomb exploded.

Inside my son’s brain, an uncontrollable chain reaction began and sent electricity coursing through every cell. His body contorted. He was disoriented. He slept. The cycle repeated for days as another team of doctors tried to contain the secondary effects of detonation, like stopping the spread of radiation after Chernobyl.

While the doctors managed to prevent the worst possible outcome, the damage was done both from the seizures and the tactics employed to put out the electrical storm. We’re still dealing with those consequences years later. But our son is here, and he’s happy, and we are grateful.

 

Yes, And…

We didn’t ask for this. One day, we woke up the same way we always did, and that night we were walking back to our hotel room from the hospital in a strange city after my son had his first seizure.

That was six years ago.

For many of those years, I fought what was happening. I didn’t want it, and I thought if I resisted it that it would go away. I looked at what was happening, and I led with “no.”

That “no” manifested as resentment and anger. I wasn’t angry at my son. I was angry at epilepsy. I was angry at seizures. I was angry at the medication and the side effects. I was angry at the universe for doing this to my little boy. The seizures, the meds, the side effects. The impact on his future.

Even though I wasn’t angry at my son, based on the way I was acting, to him, it probably felt like I was. I worried that he was internalizing what I was projecting. For years, he walked around saying, “I’m sorry” every time I corrected him or asked him to do something.

I tried to change how I was showing up for him. Instead of fighting what was happening with a “no,” I moved on to a “yes, but…” I admitted that epilepsy was happening, but made excuses so that I wouldn’t have to give in to that reality fully. “Yes, this is happening, but someday it won’t.”

The “but” in “yes, but…” wasn’t about giving up hope. It was about a lack of acceptance. There was still that resistance that got worse as things with my son got better. Instead of a bump in the road, every setback, every new symptom, every increase in seizures felt like falling off a cliff.

That falling, too, surfaced as frustration and resentment. I had little tolerance when things weren’t right. I would snap when the smallest thing went wrong. I thought that I could correct our way out of this if I could get everything perfect. I kept trying to control and change the situation into something that it was never going to be.

When we are no longer able to change a situation – we are challenged to change ourselves. ~Viktor E. Frankl

In the world of improv comedy, there is a concept of “yes, and…” The idea is that a participant takes what is given and adds to and expands it. Instead of “no” (the brick wall) or “yes, but..” (the resistance ), the “yes” encourages acceptance and the “and” expands.

Yes, my son has epilepsy, and he is amazing. Yes, he has seizures most days, and he also goes to school and plays baseball and loves Fortnite. Yes, we are on a different path than we thought we were going to be, and the future is full of new possibilities.

I’m not going to lie, even as I typed the sentences above, I struggled to think of the “and…” My brain isn’t wired to find the positive in impossibly difficult situations. But the more I do it, the easier it will become. The more I practice, the more my brain will automatically find the possibility.  I can’t change the situation, but I can change how I approach it and how I engage with him. Because he truly is amazing, and he needs to feel that from me.

Yes, my son has epilepsy, and I am the luckiest dad there ever was.

Going Virtual

The fourth grade started so well.

It was the first year where my son had multiple teachers for different subjects, and each of them took a genuine interest in him. They asked how they could best support his learning. They brought us in to talk to the entire grade about epilepsy. We strengthened our relationship with his aide. The new special education teacher showed initiative and commitment by working with the other teachers and us to make sure my son’s IEP was current.

My son seemed to be doing better than last year, too. Even though he had a modified schedule and didn’t need to, he would get up early and be ready for drop-off at the regular time with his friends. He was going to school every day of the week, and we had fewer absences than we’ve had in previous years, too.

Of course, school was still difficult for him. The noise of the classroom and the building triggered his anxiety. The attention issues were still there. He was still drifting further behind academically and socially from the other children. He still worked with his nanny on homework and subjects he missed after he got home and rested. But we found a bit of a groove in fourth grade, more than we had before.

And then the pandemic hit.

For as well as the fourth grade was going in the classroom, it didn’t translate when they closed the schools and moved classes online. My son’s school was not equipped to do online schooling successfully, and they spent the rest of the school year just trying to get through it. There was a lot of homework, a few virtual class sessions, and a lot of busywork. But with the help of our nanny who also went virtual, we figured it out and made it work.

As frustrated as my wife and I was (as were many other parents) with the quality of the “forced virtualization,” my son enjoyed the move to virtual classes. Of course, he missed seeing his friends, and the online sessions didn’t always offer a chance for the kids to interact. But he could take the lessons from the “office” we created in his room. He didn’t have the noise and anxiety that came from going into the physical school surrounded by other students.

While we knew online schools were an option, we didn’t consider them because of my son’s age, and because one of the reasons we sent him to school was for the social aspect. But because of how well he responded to the move to virtual classes during the pandemic, my wife started looking into them as an option for fifth grade.

Initially, I was worried about how they would deliver instruction to an 11-year-old. From what I saw of the virtual classes in his current school, I couldn’t imagine learning anything. But the first thing we picked up on talking to the online school was that it is very different when a school is set up to operate virtually versus a traditional school that is thrown into teaching online.

The online school is also required to accommodate an IEP and might have more flexibility in accommodating my son’s schedule and his need to chunk activities during the day. They have programs in place to help students meet and connect in the real world, too. We’ll have to get creative to continue to develop his social skills, but the in-person meetings will help.

The more we looked into it, the more that it seemed like a good thing to try for fifth grade. Forcing my son to go back to an environment that makes it more difficult for him to learn when there is another option is irresponsible. Besides, we can always go back to the traditional classroom if it doesn’t work out. But, especially with the state of the world and the uncertainty about the fall, all the signs point to trying something different.

If you have any experience with online schooling, I would love to hear about your experiences, good and bad. Feel free to leave a comment or contact me directly.