epilepsy dad

Category: parenting

  • 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.

  • Neverland

    Neverland

    Early in the morning, my son had a seizure. As his body tensed and contorted, his lungs expelled air through his vocal chords. The sound it made traveled between the open door of our rooms and woke me up.

    I pulled off my covers and made my way into his room. He had sat up, but he was already making his way back on to his pillow. Standing at the head of his bed, I reached my hand through the slats and stroked the top of his head. I whispered to him that he was going to be okay and that he should go back to sleep. He eventually did, so I returned to bed.

    I checked the clock. There might have been enough time for me to fall back to sleep, but it was also close to the time that I needed to wake up. While I pondered what to do, I stared at the screen of our monitor. My son was asleep, with a blanket draped over him and his two fingers that he still sucks in his mouth.

    My restless, exhausted brain started to drift. Someday, I thought, he’s going to grow up. Instead of the sound of a child, I will hear the deeper sound of a young man echoing through the hall. I shuddered at the eventuality and gave up on the idea of going back to sleep.

    I started to think about what else was going to change but stopped myself. I see the boy on the monitor and can’t think of him being anything else. If I knew where Neverland was, I would take him there so that he would never have to grow up.

    In Neverland, he could stay the boy who sleeps in our bed when he is sad or afraid. The boy who sits on my lap when he needs to be held. The boy who looks at the world with wonder and compassion. The boy who doesn’t feel the pressure of the adult world. The boy we can shield from how ugly that world can be.

    I want to keep him at this age because it’s only going to get harder for him. He’s going to start questioning his value and his worth. His gentle soul and open, hopeful, dreaming nature will be tested, as will his belief in magic and possibility. I don’t want him to ever doubt that he can fly because the moment he does, he will cease to be able to do it.

    I know that instead of wishing for him to not grow up, my responsibility is in preparing him for the world. Instead of trying to keep him young forever, my job is to help him grow in a way that encourages the magic inside him. Instead of losing it, it will be what helps him believe that he will always be able to fly. But I thought we would have more time before the real world penetrated our existence. Maybe I thought it would never happen.

    When Peter invites Wendy to forget everything and join him to live in Neverland and to never grow up, Wendy answers “Never is an awfully long time.”

    I stared at the monitor and thought that “never” was not nearly long enough.