Invisible In Plain Sight

I stepped on to the street on my way to work. As I joined the flow of foot traffic, I saw a young man walking quickly ahead of me. I say “walking”, but he was bouncing more than he was walking. I didn’t see any of the earphones that I and most of my fellow pedestrians were wearing, but he was moving as if he had a soundtrack playing in his head that lightened his steps.

I noticed him because he was so different from everyone else on the street. He was a tall, young African American teen wearing a bright blue t-shirt surrounded by an army of mostly white business people dressed in muted black, brown, or blue. He head was up as he looked at the world around him while that world was looking down at their feet or at their phones.

When he stopped at a crosswalk, I got close enough to see that he would sometimes raise his hands and sign to no one in particular. It was as if he was signing the lyrics to the song in his head. Like when the chorus of a really good song comes on and you find yourself singing along, even if only in your head. From half a block away, this young man looked like joy personified walking up the street.

The light turned green before I could catch up to him. He danced through the intersection and on his way. As he did, I saw that he would occasionally wave to people passing in the opposite direction. Even from my distance, I could see a big smile on his face. But no one that he waved to reacted. They kept their head down. They looked at their phones. They looked the other way.

Maybe they didn’t see him. Maybe they were busy. Maybe they were really interested in whatever was on their screen. Maybe they were scared. Or maybe they just couldn’t be bothered. We live in a big city and I see people ignoring the world around them and everyone in it all the time.

I thought that maybe the young man had a disability because he was signing. Or maybe he was just different than, in color and age and general attitude, the other people on the street. But watching how the young man was being ignored made me think of my son.

Epilepsy is often called an “invisible” condition because it lacks physical markers, but there can be signs. We’ve had more than a few people ask us politely “Is there something wrong with him?” after they spend time with our son. He’s noticeably different in a self-centered world that doesn’t seem to have a place for people that are different. We talk about diversity and inclusion but we look the other way when it is our turn to act…when it is our turn to accept someone who is different from us.

I watched the world look away from that young man on the street. I saw the world unwilling to acknowledge another human being. I don’t want that for my son but I don’t know what to do about it. I wish I could change the world. I wish I could make it more accepting, more forgiving, more tolerant, more open, more aware. But we’re heading in the wrong direction. I fear that the only thing that I can do is prepare my son for the road ahead.

But then I turned my attention back to the young man. I could see, as he waved to the next person, that he was smiling. Even with the world ignoring him, he was walking with a bounce in his step and smiling. He would wave at another person. And then another. And he would keep smiling. I watched him not slow down, not shy away, and keep moving forward. I thought of my son then, too, because he has that same persistence, the same drive to bring joy to the world. And for a brief moment, I felt hope.

I never caught up to him, but I wish I could tell that young man that he brightened at least one person’s morning that day.

Being Seen and Unseen

My son is becoming more aware of how he feels. He’s becoming more aware of how other people see him. He’s making that connection and noticing that he’s different from other kids.

A few weeks ago, he met with his neuropsychologist and she asked him about school. He told her that he wanted the kids to look at him. He wanted to be seen. My heart broke for him. This is the age when kids start to develop friendships that go beyond an activity or beyond school. And he felt invisible.

It’s been hard for him to make those connections. In part, it’s because second grade has been tough on him mentally and physically. There have been days where he has been too tired to make it to school or stay for the full day. It’s hard to build friendships when you aren’t there. It’s harder to insert yourself into relationships that have already been established.

But there are emotional challenges that make it hard, too. He does feel different from his classmates and he doesn’t quite know how to interact with them. He doesn’t always see the line between funny and inappropriate. Even if he did, he has a hard time regulating those actions.

He is also socially behind the other kids because he was so sick and spent a lot of his time with us or in the hospital. He wasn’t going on play dates. He didn’t go to a lot of birthday parties. He didn’t have those opportunities to learn how to interact with his peers. It’s like trying to compete in a race when all the other participants had a head start. None of them are going to slow down to let you catch up, and they’re too far ahead for you to even know where the course is.

The result is that he doesn’t feel like he has a place there, or that anyone cares that he is there. School must be a very lonely place for him, but we keep pushing him to go, thinking it will get better.

Now, we’re seeing those feelings come in to play outside of school now, too. The other day, we were at the pool with friends and another group came in that included kids from my son’s class. My son got quiet and covered himself with his towel. He whispered that he only wanted to be seen at school.

At first, I thought it was because there was a history with one of the kids from that group. But I also wondered if my son was trying to separate school from the outside world. It was as if he didn’t want the feelings from school to bleed into his safe, private world at home.

I want my son to have friends, and to feel special and important. I don’t want him to feel like an outcast. Sometimes, that desire for him to fit in causes me to overreact when he is trying to be funny but crosses a line. Instead of gently guiding him to a different behavior, I say things in a way that I worry make him feel shame. Not intentionally, and not with any words that are meant to convey that message. But my frustration with the world comes out sounding like I’m frustrated with him.

It’s one thing to have the kids at school reacting the way they do. It’s another to have his parents response the same way. My son is walking around and having everyone tell him what he is doing is wrong. We aren’t seeing him or, if we are, we’re telling him it’s wrong. I’d want to run and hide, too.

I can’t control the rest of the world or how it responds to him. I can teach him the best I can how to live in it. To get him the support and services that he needs. To do what I can to structure his life the best way we know how with where he is today, knowing that will change. To help him develop a strong sense of self, but to be aware and present enough to know when that fails him. Because trying to force everything and not being aware of where he is will do more damage than the world can do to him.

But I can be more aware of how I am responding to my son and the situation. I can control my own actions and respond with loving kindness to where my son is at any moment. The last thing I want to do is to take away the one safe place that he has. I want his home to be a place where he is seen, truly seen, for who he is.

And I want him to know that who he is is amazing.

Opening Up About My Son’s Hidden Epilepsy

This post is part of the Epilepsy Blog Relay™ which will run from March 1 through March 31. Follow along and add comments to posts that inspire you!

If you saw my son on the playground, you might not notice anything wrong with him. He’d be running, playing, and laughing alongside the other children. Epilepsy is a “hidden disability”. It can remain invisible, hiding its nature until a seizure reveals the cruel truth. For my son, his seizures occur in the early morning hours outside the view of the rest of the world. While there are traces of other symptoms of his condition, they, too, often go unnoticed. As a result, we control whether to expose his condition to the people around us.

There are times when it is easy to know that we should disclose his condition. At school, he is on a 504 plan so his epilepsy is well documented, and he has special accommodations during the day. His aide and his teacher have both come to understand him and are able to better adapt to his needs. While many of his classmates can’t grasp what they cannot see, we are as honest with them as we can be. It’s hard to not notice the aide, the breaks and the absences. Ignoring the reason for them would confuse his young class more.

Sometimes disclosing his epilepsy is a matter of safety. Before we signed him up for hockey, we asked if they were comfortable with a student that had epilepsy. On the first day of practice, we talked to the coach to remind him. When my son had a seizure on the ice, the coach was prepared and we spoke with him afterward, as well. It would have been unfair and irresponsible to hide my son’s epilepsy, even if he hadn’t had that seizure. It also could have easily traumatized his coaches. It’s bad enough seeing a seizure when you know one is possible. It’s another thing to be caught off guard.

As his father, I worry what the stigma of epilepsy will do to my son. Classmates made him feel different because his ketogenic lunch was strange. They weren’t trying to be mean, but it caused my son to hide his lunch for weeks. As he gets older, the comments may not be as innocent. My wife and I work hard to give him a good foundation of strong values and a deep sense of self-worth. I don’t want him to feel shame because he has epilepsy. But he’s my little boy, and knowing that he’ll face challenges because of his condition is hard. The idea that he’ll be stigmatized by others because of it is unbearable. That alone makes me want to protect him and never tell anyone about his epilepsy.

So I hide his struggle (and ours) from those around us. I don’t talk about his condition or volunteer any information for fear of judgment or pity. To the parents from his school and his hockey class, he’s another normal kid. To the people passing on the street and the people that see him on the playground, he blends in with everyone else. Some days, those moments feel like a gift that I don’t want to let go of.

It’s tempting to take the same approach in every situation. But epilepsy is such a big part of his life that people won’t know the real him with that piece missing. They won’t know how hard he works to function on a bad seizure day or to navigate the fog caused by his medicine. They won’t know that he has different limitations and abilities. They’ll never understand him without that piece of the puzzle and I want him to be understood. He is worth understanding.

Is it better to feel like everyone else when you know that you aren’t? Or is it better to always feel different but to always be yourself? Should the answer I’d give for myself be the same that I’d give for my 7-year-old son? These are the questions that I found myself asking as I tried to wrap up this post for epilepsy awareness. I struggled for a long time trying to come up with a concise answer, but I couldn’t. Because there is no answer. There is just doing the best that I can with what I am capable of doing and with my son always first on my mind.

NEXT UP: Be sure to check out the next post tomorrow from Audra Sisak at www.hislifewithautism.com for more on epilepsy awareness. For the full schedule of bloggers visit livingwellwithepilepsy.com. And don’t miss your chance to connect with bloggers on the #LivingWellChat on March 31 at 7PM ET.