Then Things Changed

This is the first time in months where I have sat down to write.

Before I did, I skimmed my posts from earlier this year. I wanted to be reminded of where we were. Our family felt isolated and trapped in the city, and there was no hope of moving. My son was struggling with his virtual school, and there was no hope of finding a way of learning that would work for him.

I wrote those posts as a way to process my thoughts. I wrote those posts as a way to ask the universe for help. I wrote those posts because I had to get those feelings out. They were real. They are real. Putting them down in writing felt like the last act of acceptance that nothing was going to change.

But then things did change.

I’m writing this post in our new house. I’m writing this post early in the morning before my son wakes up and gets ready to go to his new school that is only a few miles away with kids that have challenges just like him. I’m writing this post the day after my son spent hours in the yard playing with other kids from the neighborhood who didn’t treat him like he was different at all.

The contrast between where we were and where we are is surreal, but I know things won’t always feel this way. My son is still seizing every day. The cognitive, social, and emotional gap between him and his peers is obvious, and it is growing. And the one constant thing in our epilepsy journey, for better and for worse, has been change.

At this moment, though, I am immeasurably grateful to have landed where we did, when we did. Because we needed it. Because we are together. Because we can breathe. And because for the first time in a long time and despite the struggles he faces every day, my son is happy.

Stepping Up To The Plate

There is a screen saver on our television that lets us use our own photos. One of the pictures we used that has come up in rotation is from one of my son’s baseball games. He’s standing at the plate, adjusting his helmet with his left hand while his bat hangs down from his right.

It feels like that picture was taken in another life so long ago. But it’s only been a few years. “Only,” as if that is an insignificant amount of time.

He said the other day that he misses baseball. I miss him having baseball. I miss him playing a game that he loves, surrounded by other kids being kids. I miss the look of his “game face” or the excitement and expression on his face after he got a hit. I miss his laugh as he and the other kids ran around the bases at the end of the game and created a pile-up as they slid into home plate. I miss retelling the best moments from the game in the car on the way home.

We had signed him up for this season, hoping to introduce a bit of normalcy back into his life. But because of an abundance of caution for his health and other changes on our horizon, we decided to pull him.

I still haven’t told him.

Seeing that picture on the screen is my reminder, not just to have the hard conversation but also about how isolated he is. Baseball was one of the only places where he showed up as an equal. That feeling and those bonds that he made on the field were the same as the other kids. But the other kids created bonds in school, as well, that my son missed out on because of his long absences over the years.

He plays Fortnite with a few of his former classmates, but I can hear the conversations sometimes, and, with a few exceptions, he is treated as an outsider. Many of the kids who developed those classroom bonds still go to school together or play sports together. They have the real-world bond that carried through to the online world. It’s hard to compete with that when the only interactions that you have are virtual ones.

It’s the same reason my son is struggling with a virtual school. In addition to the difficulty many of us have to stare at a screen all day and the mind-numbing burden of an all-day video call, he’s getting zero in-person social interactions. He’s not making friends, even though he receives online social skill classes because it’s hard to build those relationships and connections in a meaningful way when the person on the other end is only a face on a screen or, worse, one of the dozens of faces on a screen.

But even though the other kids have stronger bonds and sometimes exclude him, he still sends that invite to play online with his friends. Despite feeling like an outsider and that sting that comes from not getting picked, I’ve seen my son be so kind and generous and play the game modes that his friends want to play. I’ve also seen him put his own needs out there and ask to play the games he wants to play.

He still wakes up every school day and sits in front of that screen, and he tries to follow along. He fights through his exhaustion and attention issues to participate in the class as best as possible. In both cases, despite the challenges, he shows up with an open heart and a willingness to learn, be included and connect. Like the picture on our television, every day, he steps up to the plate.

And I couldn’t be more proud.

Breaking The Mold

Regardless of who actually said it (it probably wasn’t Einstein), at times I feel like I’m living the definition of insanity by doing the same thing over and over again and expecting different results.

At the center of this insanity is a compulsion to fit my son into the world’s definition of “normal”. There is a mold made up of societal norms and expectations that I try to force him into, even though it is clear that the mold is the wrong shape.

Still, I try to make it work because I’m scared that, if I don’t, the world won’t accept him and it will cast him out. Or label him. Or make him feel “less than.” As a result, I correct him when he does something that makes him look different from everyone else rather than celebrating his uniqueness. I spend more time trying to make him work inside what the world expects of him rather than finding ways to make the world work for him. And I keep repeating that pattern, in spite of all the signs that it isn’t working and that it isn’t the right thing to do for my son.

I think that is partly because I don’t know what does work for him. The things I try are the things that are familiar to me. They are the things that I know exist. They are the things that I grew up with because somehow, in spite of feeling very different, I managed to get a traditional education, and go to college, and get a job. I was able to existing inside of the “normal” that most other people seem to also make work for them.

My wife is much better than I am at flipping the narrative and seeing that it is the world needs to change to include our son. She looks for places where our son can feel like he belongs rather than making him fit into any molds. But given the state of the world and its indifference or intolerance to anyone who is different, I can see her frustration and anguish every time the world doesn’t understand him, or us, or our situation.

She’s the reason that we are looking at alternative schools for our son. She’s knew it years ago but no one would listen. I might have thought I was listening, but I was too afraid to act on it because I thought things would get better. I thought I could make my son fit into that mold if we just kept trying. Worse, even when I knew it wasn’t working, my fear led me to just keep trying the same things because it was less scary than going into uncharted territory and discovering that he doesn’t fit in anywhere. I was as accomplice in the notion that we could simply remove a few expectations from him to make him fit the mold better. But all that did was make him disappear.

I am trying to stop the insanity. I am trying to redefine my view of the world and what I expect my son’s path to be because I am seeing that his path does not need to look like my path. His path will be made up of his experiences, tailored to who he is. It’s big and it’s scary and I don’t know what it will look like, and it may take endlessly battling the world to make room for him. But that is something worth doing over and over again.

The world seems intent to prove that it is my son who is the wrong shape, but the world is wrong. My son broke that mold the first time he had a seizure. Actually, he broke that mold the day he was born.