Our Story – National Epilepsy Awareness Month

Recently I attended a class where I needed to give a 4-minute talk. Inspired by National Epilepsy Awareness Month, I took the opportunity to share our story with my classmates.


A little over 6 years ago, my company offered me a new position that would move my family from Colorado to Philadelphia. I had been to Philadelphia for work many times, but my family’s first visit was shortly before our move. We flew there together and my wife and son explored the city and hunted for houses while I worked.

One night, after a long day of house hunting, we went to an arcade to play games and have dinner. My son had a fascination with Guitar Hero and spent a good chunk of the night shredding the plastic guitar to AC/DC.

When we were done, we headed down to the exit to wait for a taxi. I remember there was a thunderstorm, and we stayed inside the lobby watching the rain and lightning. Before it arrived, my wife and I both noticed that something was happening with our son. He stopped responding, and his body had stiffened. At first, we thought he was joking but, when he wouldn’t come around, we knew something was wrong. I held my son as my wife called 911. Instead of a taxi, we left the arcade in an ambulance and headed to the hospital.

Finding yourself in a strange city, late at night in the hospital waiting for the doctor to tell you what happened to your toddler is an experience that I wouldn’t wish on anyone. The rooms were full so my son was on a bed in the hallway as we watched the chaotic energy of an urban hospital and the activity around us. Eventually, the doctor confirmed what the paramedics had told us what likely had happened, and that was that my son had a seizure. Because it was his first one and because he was slowly recovering, they sent us home.

A few days later, we left Philadelphia to go back to Colorado. There were no other signs or lingering effects from his seizure, so life went back to normal. We packed up our house and headed east.

Once we moved, we spent time exploring our new home. Eventually, we stopped worrying about epilepsy and seizures. But epilepsy wasn’t done with us. A few months later, my wife and son were boarding a plane to visit friends in California when my son had his second seizure. Fortunately, the flight crew was able to get my family off the plane and they found themselves in another ambulance, this time headed to the children’s hospital.

The second seizure came with an official epilepsy diagnosis. At the time, I didn’t really know what epilepsy was other than what I had seen in the movies. Even though seizures and epilepsy are common, that is true for many people, so I want to share some information with you.

First, what is epilepsy? It’s a seizure disorder characterized by uncontrolled seizures.

More than 3 million people in the United States have epilepsy. 1 in 26 people will develop epilepsy in their life. 1 in 3 people lives with seizures that aren’t controlled by treatment. Sometimes, there is an identifiable reason why someone has seizures, but 6 out of 10 people with epilepsy don’t know the cause.

Unfortunately for my son, the last two bullets apply to him. We have not been able to figure out what causes his seizures and, even though we’ve tried different medicine, put him on a special diet, and had a device called a VNS implanted, he still has seizures almost every day.

The reason I wanted to use my time today to talk about epilepsy, in addition to it being such an important part of my life and my family, is because November is also Epilepsy Awareness Month. If you didn’t know anything about epilepsy before today, I hope I gave you a glimpse at what it is. And if you didn’t know anyone before today who was affected by epilepsy, now you do.

While epilepsy is a big part of our life, I wanted to end my talk on a positive note. While my son does still has seizures, he is also a very happy, energetic 11-year old. He loves hockey and baseball, and last year he was selected to the All Star team for his baseball league. This picture is one of my favorites, and that’s him sliding into home plate underneath the tag of the catcher. He scored and wound up receiving the game ball as the game MVP.

Thank you for listening to our story, and if you have any questions or want to learn more about epilepsy, please reach out!


Resources:

Epilepsy Foundation – National Epilepsy Awareness Month

Epilepsy Foundation and Epilepsy Foundation of Eastern Pennsylvania

Epilepsy Dad

 

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.

Part Of The Team

Spring is here, which means it’s time to hang up the skates and grab the bat and glove. This year, my son moved up from teeball, which I coached last year, to baseball. Since I’m not coaching this year, it meant having another conversation about epilepsy.

I still get nervous introducing people to my son’s condition. I try to strike the right balance between “he has a serious medical condition” and “everything is going to be fine.” It’s hard. Too much information can overwhelm even the most altruistic volunteer. But I’m not doing my job unless I am honest about all the potential challenges.

There are times when I wish that I could not say anything. I could hope for the best and let my son take part in an activity without a caveat. After all, he’s not likely to seize. And there are plenty of kids on the team that have a hard time listening or focusing. He could blend in.

That would be easier. The coaches wouldn’t have to be scared. I wouldn’t have to worry about him being treated differently. I wouldn’t have to face the reality of our situation. I wouldn’t have to make epilepsy a part of everything that we do.

But, the fact is, it is a part of everything we do. And it’s my job as a parent to do what is best for my son. I want to keep him safe but I also want him to enjoy the experience. The only way to do that is to have an open communication channel with the people in his life. We were told early on that we, the doctors, nurses, teachers, aides, babysitters…we are all a part of my son’s team. And like any good team, everyone needs to be informed so they can play their part.

When we talked to his coaches, they thanked us for telling them, then they asked what they could do to help. That night, they reached out to us again to let us know that they were happy he was on the team. To the father of a child with epilepsy, the best way to show that they were part of our team was to make him a part of theirs. They had done that with one phone call, and they continue to do it at every practice.

As anxious as I get about doing it, the more we have the conversation, the better we get at it. The better we get at it, the better people respond to it. And the better people respond to it, the less anxious I will hopefully be the next time. Which is good. Because it’s a conversation that isn’t going away.