Tag: disability

When He Looks at Me

I’ve noticed it for a few years now.

He’ll say something, or try out a joke, or make an observation about something we’re watching, and then he’ll look at me. Not a glance. A look. He holds it for a beat longer than most people would, waiting for something to come back.

I noticed it gradually, the way you notice most things about your kids. Not a single moment but a pattern that eventually became impossible to miss.

I tested it once or twice. Not in a mean way. There were moments where I could smile without making eye contact, could let the beat pass without responding, and I’d feel him still looking. Holding. Waiting. A few seconds longer than felt accidental.

I asked him about it once. Why do you do that?

He didn’t know. That’s true for a lot of things he does when you ask him why. The awareness required to answer that kind of question hasn’t fully arrived yet, and may take time, and may look different when it does.

So I’ve been left to wonder on my own.

Part of it is probably simple. He wants to see if he made me laugh. He wants to know what I think about what he just said. That’s not unusual for a teenager, or for anyone. We look at the people who matter to us to see how we’re landing.

But I carry my own history into everything I observe, and I can’t always separate what I’m seeing from what I’m afraid of seeing.

I was made to feel small. Not by one thing, but by enough things over enough years that I spent a long time wondering if I mattered. If I was visible. If anyone was actually registering that I was in the room. I know what it feels like to look for confirmation that you exist, and I know how much energy that takes, and I know what it costs over time.

When I see my son hold that look, I feel two things at once.

I want him to feel seen by me. That part is easy. I am always looking. I notice everything. He does not have to wonder whether I’m paying attention, whether his jokes land with me, whether I think what he said was interesting or funny or true. I am here. I see him.

But I also want more than that for him.

The world was not built for him. That’s something I’ve written about before and something I think about constantly. People with his needs are often invisible in the systems and spaces they move through. He has to work harder to be noticed, harder to be understood, harder to be taken at full value rather than reduced to what he struggles with.

He is so much more than what he struggles with.

He is kind and funny and specific and stubborn in the best way. He has opinions about hockey teams and strong feelings about Fortnite and he named our dog after a winning moment in a video game. He looks at his father to see if a joke landed, and when it does, the satisfaction on his face is complete.

I don’t want that looking to come from the same place mine did. I don’t want him scanning faces for proof that he’s real. I want him to know, without having to check, that he is seen.

Not for what he carries. For who he is.

Maybe that’s all he’s doing when he looks at me. Maybe he just wants to see me laugh. Maybe it’s nothing more than that, and I’m the one making it heavy.

I hope so.

But I keep looking back.

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.

Things That Matter

I’ve lived my life in a bubble.

When I was young, my mother worked hard to provide for my sister and me, and I remember that struggle. But when my stepfather entered the picture, life got easier. We did fun things. We camped every summer on the beach. We had a house, and food on the table, and an Atari 2600. We weren’t rich but I always had everything I needed.

After high school, I went out on my own. I lived my life largely without incident. I joined the Army “between wars”. I went to college debt-free funded by the GI Bill and my employers. I got a job in an industry that pays well and provides affordable insurance and other benefits.

Even though I have traveled the world, I always felt isolated and unaffected by it. Wars were fought by others and were very far away. Elections were about issues that I had no reference for. The rhetoric was noise in a system designed for winners and losers instead of compromise. The talking points and issues didn’t relate to me so, even though I voted, I didn’t really participate. I stayed in my bubble and carried on.

They say that having a child changes you. When my son was born, a tiny hole opened in my bubble. It was large enough to let in more joy, and fear, and hope than I ever thought possible. At first, it was overwhelming. I looked through that opening and saw the world, in many ways, for the first time. The world that I would leave for my son was cruel and selfish but hopeful and changing. Instead of opening the hole more, though, I pulled my family through it and the bubble again closed to protect us.

When my son was diagnosed with epilepsy, the bubble began to disintegrate. I could see it happening. The outside world became clearer as the layer of protection around us grew thinner. Even with health insurance, the medical bills added up. There were “maximums” and things not covered by our plan. The “pay later” designation of our plan lived up to its name. I finally had a reference, so I wondered what this was like for someone with no insurance at all.

Then when my son was finally able to return to school, he was going back in as a child with special needs. If you haven’t gone through the process, there is no adequate way to explain it. The fear and frustration that comes from trying to prove to a system that sees your child as a financial liability that he needs and is worth the extra resources is anguishing and exhausting. And you get to redo it every year, for every grade, until they hopefully graduate.

Eventually, the bubble that I had lived my whole life in burst under the pressure from the outside world. Now, I am paying attention. Now, there are things that matter.

There are debates about changing health care laws. That matters. My son has a disability. I have to think about what it will be like for him to try to get insurance with a preexisting condition like epilepsy. Could he even get it if the laws change? Could he afford it? Or is he destined to rack up medical bills for the rest of his life and struggle financially?

My son also has learning difficulties. At school, he has an aide and has special accommodations to help him. These services are expensive and privatizing public education means my child is a drag on the bottom line. Even the placement of the bar these services should help him reach is under debate. Should these services help him keep up with his peers or provide “just enough” to make him functional. That matters, too.

With the bubble gone, I’m looking beyond myself. There are other important issues that affect the people around me. It is not a far leap from how we treat people that are different because of where they come from or what they believe to how we treat people that are different because they have a disability. History has shown the consequences of ignoring that connection. Intolerant regimes persecuted their own disabled citizens alongside the outsiders they deemed unworthy.

So, when my coworkers staged a walkout to protest the immigration ban, I joined them.

I would have gone anyway. Many of my coworkers and friends are directly impacted by the ban and I wanted to support them. But I went for myself and for my son, too. Intolerance of any kind is dangerous, is not who were are, and does not represent the world that I want my son to inherit. That matters most of all.

It’s time to embrace this life outside the bubble. It’s time to believe in something. It’s time to pay attention, and it’s time to take action on things that matter.