epilepsy dad

Category: parenting

  • That Parent

    That Parent

    The stories about the overly competitive sports parents are true. I’ve seen them in the stands yelling at their kids, yelling at the coaches, and yelling at the umpires. They’re the parents trying to make their kid the next Micky Mantel, or Jackie Robinson, or Randy Johnson. Or they’re the parents that felt robbed of a chance to be the star and are reliving their glory days through their children.

    I never wanted to be that parent. When my son started playing hockey, it was because he wanted to. When he moved on to baseball, it was because he wanted. He loved it. I thought my great advantage was that I never played organized sports as a child so I had no delusions of fame and fortune for myself or him. He could play a sport because he wanted to without fear of it being a proxy for my unfulfilled dreams or the pressure of making it his career.

    But at a recent game, I caught myself yelling at my son about his mechanics. Get your elbow up! Keep your eye on the ball! I yelled to get his attention when he wasn’t in the right position or was playing with his hat. What are you doing? Pay attention!

    During one of his at-bats, I was louder than his coaches. I could see that he was anxious and overwhelmed by all the other voices coming in at him. I knew he was also nervous because he was in a hitting slump. I wanted to be louder so that he would focus on my voice because I thought that would settle him down. When he struck out, I got mad at everyone else for yelling at him and distracting him. When my wife tried to talk to me, I snapped at her. Then, it hit me.

    I had become “that parent”.

    I tried to convince myself that it was different. I wasn’t trying to live through him on the field or get him a contract. I thought he would be happier playing baseball if he did better and I knew he could do better. I was trying to help him stay on task and remember his steps so that he would be able to draw some enjoyment from something in his life. It was for him, not for me.

    But from his perspective, his dad is yelling at him because he is doing something wrong. My son walks around apologizing for everything, anyway. I can’t help but think those things are related. Am I snapping at every little thing and making him feel in a constant state of disappointment where he feels the need to apologize all the time?

    I know that that’s like. I grew up with an unhealthy expectation of perfection. I’m still struggling with it today, and I see how it limits me. I wasn’t placing expectations on my son to become a professional baseball player. I wasn’t trying to relive my youth. But I still risked ruining the game that he loves by transferring my baggage to him and, worse, watching it seep into the rest of his life, too. I desperately want to learn those lessons before it’s too late because I don’t want him to turn away from something he loves because of me. I don’t want to be “that parent” who takes the joy out of the game. Because I can’t get out of the way.

    Baseball has been very good for my son. It continues to teach him how to be a part of a team. It gives him opportunities to believe in himself and work through difficult situations. It teaches him how to be a gracious winner and loser. And it shows him that he can get better at something through practice because he can see how he is better at the end of the season than he was at the beginning.

    Baseball has been good for me, too. It gives me opportunities to see my son in different situations where he can fail and succeed. It shows me that he can do so much more than I think he can, and it shows me when he can’t. And it’s causing me to look inward at my issues with perfection so that I don’t make them his.

    I want to do better. I think I am doing better. I hope I am doing better. Because at the end of the season, I want to see how much better I am than I was at the beginning.

  • Awareness Never Ends

    Awareness Never Ends

    This post is part of the Epilepsy Blog Relay™, which will run from June 1 to June 30, 2018.  Follow along!

    We sat at a large, round table in the special education classroom with half of us seated uncomfortably in child-sized plastic chairs. My wife, our advocate, and I sat on one end of the table. The district’s lawyer, psychologist and special education coordinator, the school’s principal and special education teacher, my son’s second-grade teacher, and his aide filled the remaining seats.

    We were reviewing my son’s IEP that had just been approved. After two years of providing our own DIY education for our son under a makeshift 504 plan, we hired a lawyer to finally get my son a formalized education plan and the protection that it affords him. It was clear as we reviewed the supporting documentation that we needed that protection because the system is not set up for children like him. It was even more clear as we reviewed his test results that they didn’t really know my son.

    They made comments about his learning without fully grasping how hard he works when he is outside their walls. They made judgments based on a few hours of testing and observation but they didn’t really understand him or what he was going through.

    When the special education teacher said that she had other kids with epilepsy, I cringed. “I had another kid with epilepsy” is like saying I’ve seen one shade of blue. The spectrum of what epilepsy is to a person is as broad as the hues and tones that make up every color imaginable.

    This wasn’t the first time that someone at my son’s school generalized epilepsy. The one-size-fits-all seizure plan hanging in the nurse’s office is another symptom of the lack of understanding around his condition. Sometimes, having a little knowledge and convincing yourself that you know everything about something is worse than having no knowledge at all. So we did what we always do and explained how epilepsy is different for everyone and how it affects our son specifically.

    We know that won’t be the last time we need to provide that explanation because awareness never ends.

    There will always be a new school year.

    A new teacher.

    A new aide.

    A new babysitter.

    A new parent.

    A new doctor.

    A new nurse.

    A new coach.

    A new team.

    A new boss.

    A new colleague.

    A new friend.

    Every time a new person comes into our lives, it is an opportunity to help them understand my son. It’s an opportunity to help them understand epilepsy from the perspective of a child and a family living it every day.

    It is not always easy. It’s not easy to retell the story of how epilepsy tried to take our son. It’s not easy to describe how hard he has to work every day or to explain how epilepsy is more than just seizures. But every time we do it, we create understanding. It makes the world around my son a bit more accepting of him and his condition. And, I hope, it creates a bit more understanding in the world for other children like him.

    NEXT UP: Be sure to check out the next post by Clair at http://www.epilepsybumps.com/.

    TWITTER CHAT: Save the date for the  #LivingWellChat on June 30 at 7PM ET.

  • A Different Life

    A Different Life

    There have been times when I have wondered how my family’s life would be different if my son didn’t have epilepsy. There have been times when I have wondered what it would be like even if his seizures were under control, or if he didn’t have the side effects that he does from his medications. But a television show forced me to confront a much tougher question.

    I’m a big fan of the show Black Mirror, and I found a similar show on Amazon Prime called Electric Dreams, based on short stories from Phillip K. Dick. In an episode called The Commuter, the protagonist is a father who has a son prone to violent outbursts. As the story develops, the father is offered the chance for a different life, an easier life, in which his son was never born.

    electric dreams the commuter parenting
    The Commuter, Philip K. Dick’s Electric Dreams, Amazon

    As I watched the episode, I thought about turning it off. The story hit too close to home, because I’ve also thought about what my son’s future will be like if we can’t get his seizures under control. I’ve wondered what his future will be like if his emotional and behavioral issues weren’t able to be controlled. And I was ashamed that, when things were at their worst, I also wondered where my life would be if my son wasn’t born.

    Even writing it down, I feel sick. I’m looking at those words and I’m not sure where to go with them. I want to spin it to be about my son because this wasn’t the life that I dreamed for him. But, while that is part of it, there is also a selfish component. When we were having to hold him to control his angry, dangerous outbursts, my thoughts went to darker places. I thought about having to do that for the rest of my life. I thought about someday having to put him in an institution or visit him in jail. I dreaded the phone call where someone on the other end tells me something that my son has done that we can’t excuse or take back. But those thoughts weren’t about what his life would look like. They were about what my life would look like.

    Our life is hard sometimes. It’s also amazing, and we’re very fortunate in so many ways. But it’s also impossibly hard. It’s hard to watch my son struggle every day. It’s hard to feel like everything is always out of our control. It’s hard to keep having conversations about what to try next because everything we’ve already tried didn’t work. It’s hard to hold on to hope for a future that is different than what is in front of us. It’s hard to not let fear take over and seek out alternative paths.

    But having the thought isn’t the same as wanting it to be true. If I were given the choice, I would choose this life every time. I would choose my son every time, because being his father is one of the best things about my life. Being his father has made me a better person and a better man. Being his father has opened me up in ways where I can have these impossible thoughts and come out the other side knowing that I am where I am supposed to be. And every day, when I see his face, I also know that I am where I want to be.

  • Lessons From The Field

    Lessons From The Field

    The welcome arrival of Spring brings with it sunshine, warmer weather, and baseball. Last season was incredibly special for my son and our family because of the team we were on and the experiences that my son had. At a time when my son desperately needed something to hold on to and an outlet of his own, he found it in baseball.

    This season, we are on a new team but there is no reason to think his experience will be any different. We’re fortunate to be reunited with coaches who knew my son from when I coached him and the coaches’ daughter in tee-ball a few years ago. When we reached out to them to give them background on my son, they already knew about him and welcomed him wholly.

    Baseball has been good for my son. It provides him with an opportunity to be around other children, to have fun, and to get better at something that he enjoys. It has been good for me, too, by giving me opportunities to step back and let my son have his own experiences, his own successes and failures, and to let him figure out from those experiences who he is and who he wants to become.

    Last weekend, my son had a chance to pitch for the first time. He was excited. I was terrified. My brain immediately went to what could go wrong. His throwing accuracy is not the best. I was worried that he would be embarrassed. I was worried that he would walk everyone. I was worried that he would lose the lead and that his teammates and coaches would be disappointed. I was worried that he would like it but wouldn’t be asked to do it again.

    Before the inning started, I took him to the side to get him warmed up. He wasn’t great, but he wasn’t terrible. Then they called him up. As I walked him back to the field, I flooded him with instruction and advice. He threw a few more warm-up pitches with the coach and seemed to do ok, but I held my breath as the first batter came to the plate.

    The thing about my son is that he likes to play the part. He’ll see a movie of a baseball player and add the drama and flourishes to what he is doing, even if it’s not appropriate for his situation. On the pitcher’s mound, he looks towards first as if he is going to pick off the runner, not understanding that in his league, the players have to stay on the bag anyway. While he is on a base, he’ll crouch way down like the player did in the Jackie Robinson movie, even though it’s not practical to run from that position. I get frustrated because I think he could do a much better job if he could just focus on the task even though many times he simply can’t. But then he also might not have as much fun.

    On the mound, he threw a few strikes but a lot of balls. He walked a lot of batters and hit one. I could see him start acting instead of following his steps. I tried to get him to settle down before I realized I was likely making it worse. My frustration and anxiety were bubbling up as I watched our sizable lead shrink. The coach was finally able to put in a different pitcher and I started to think about the conversation I would have to have with my son. Should we talk about not playing the part and just focusing on doing his steps? Should we talk about how they may not ask him to pitch again? Should we talk about how he can do better?

    When the inning was over, my son ran off the field with a big smile on his face. “Did you have fun?”, I asked. “That was amazing,” he said.

    After the game, my son and I played catch. He threw the ball right to me every time. I asked him what was different between throwing the ball to me and pitching and he said that when he was pitching, he was nervous because everyone was watching him. I realized that I was so focused on the mechanics of pitching and trying to get him to stay out of his head that I didn’t think to check in with how he was feeling going up to the mound for the first time. I was so focused on my anxiety and my frustrations that I didn’t ask about and acknowledge his.

    It’s hard. It’s hard to step back and to not be the “helicopter dad” always trying to protect him or to keep him on task. I do it with the best intentions. I want to protect him. I want to help him with the challenges his condition and the side effects of his medicine bring to his life. I felt like he needed me to do those things to function in the world, but deep down I know that it’s holding him back. He needs to be able to figure it out without me because I won’t always be here. And he needs to feel like he can do it by himself and for himself so that he develops confidence and a sense of worth. He simply can’t do that if I’m always trying to do it for him.

    On the way home, I asked if he wanted to pitch again and he said “absolutely.” The coaches agreed. Because where I saw anxiety and fear and failure, they saw an amazing kid do something that he had never done before with joy in his heart and a smile on his face. They didn’t expect him to do it perfectly his first time because they know that he’ll get better with experience. They just wanted him to have fun doing it. Once I got through my own baggage, I figured out that so did I.

  • The Macro and The Micro

    The Macro and The Micro

    There is a difference between the macro and the micro. The macro is the big picture. It’s the view of our life from the outside. It’s filled with generalizations. The micro is our life on the inside. It’s the day to day, minute by minute decisions and occurrences that are missed when you only see the big picture.

    The macro is the view from our social media feed. It’s the images of Hawaii and hockey games, Globetrotters, and Florida. It’s the smiles and the perception of a normal family living a normal life.

    The micro is the structure and planning that goes into every day that allows those experiences to happen. It’s the fallout after a game when he is too tired to regulate his behavior, or the next day when he is so tired that his routine is off and we have to start over from scratch.

    The macro is seeing him leave the house with a backpack on his back heading to school. It’s math, and reading, and recess and lunch. It’s a science project or a school play.

    The micro is how difficult school is for him and how he only goes for a few hours a week. It’s seeing the extra hours he puts in every day doing schoolwork and how hard he has to work trying to keep up with his peers. It’s falling behind socially and trying to make up for it in other ways. It’s 504 and IEP meetings, and lawyers to navigate a system that was not designed to support his needs.

    The macro is a good job with the cool job title and working for a huge corporation. It’s the view from the tower.

    The micro is the stress of a difficult job and wanting to succeed there while so much is happening at home. It’s traveling for work and being thousands of miles away, worried that I will be needed. It’s the pressure to constantly perform to keep it all together and an inability to turn it off. It’s the strain that puts on relationships. It’s the fear of it all tumbling down and losing it all.

    The macro is the family living in the city, hip and trendy in a condo in the sky.

    The micro is why. It’s living in the city to be closer to the hospital and the endless appointments. It’s needing to be closer to a public school that has to take him, whether they can support his needs or not. It’s removing as much maintenance from our lives so that we can fill the moments between appointments with joy instead of chores.

    The macro is a kind, generous, happy kid that makes the world around him smile.

    The micro is the lonely, sad, tired kid that struggles every day. It’s the kid that takes medicine three times a day that causes depression and behavior issues. It’s the kid that doesn’t have many friends and struggles to learn how to interact with the ones he does have. It’s three years on an impossible diet. It’s having things that he loves taken away because they were meant for a different life. It’s trying to figure out what is meant for this life.

    The world around us is filled with these different perspectives. It’s a choice to see the world from above or to get down on our hands and knees to inspect what lies below the surface. Macro is the aggregate. Micro is the individual. Which one you see depends on where you are and which lens you choose to use to see the world.