Category: epilepsy

Nothing Can Prepare You

When I was ten or eleven, my parents brought home our first computer. It was a Mattel Aquarius (yes, that Mattel) and it changed my life. I was fascinated by the games and the things I could do with a computer and I spent a lot of time figuring it out. My next computer was a Commodore 64, and that’s when I started programming. When I was fifteen, I got a job in a television repair shop where I spent part of my time on the work bench and part on the sales floor selling computers. In the Army, I was the resident computer expert and helped develop update archaic systems to bring them into the modern age.

When I left the Army, I got a job as a computer programmer with a large financial firm. At the time, it was unheard of to get a job in a company like that without a college degree, but I already had much more hands-on, practical experience than most of my peers exiting college. The challenges I faced, the solutions I developed, and my understanding of the practical applications of technology started me on my path as a career technologist.

When I look back, I’ve spent most of my life preparing myself for my life in technology. I read books and magazines and copied the code from their pages, inspected every line, and made improvements. I joined user groups and surrounded myself with people who understood computers and technology and absorbed everything I could. I build and repaired computers and honed my troubleshooting skills to a sharp point and thrust it into every problem that I could. I had fifteen years to prepare and acquire the skills that I needed to land that first job that eventually turned into a career in technology and a gift that I could share with my son.

I was less prepared to be a parent. I had a lot of negative lessons about what a parent should not be or do, but few role models or experiences for the type of father I wanted to be. Part of me hoped that the lack of guidance would present an amazing opportunity to be any type of father that I wanted to be but the darker part highlighted my own insecurities and made it difficult to believe that I could do the right thing. I read books and took the classes that the hospital offered, but the there wasn’t enough time to absorb everything there was to know about being a parent or to practice any of the skills that I would need to raise a child. Still, I was as prepared as I could be and made educated guesses as I tried to navigate the complexities of keeping this young life alive and teaching him about the world around him. Prepared, maybe. Proficient, not even close. But I held on to the belief that, even though I fumbled, that’s what parenting is, and as long as I love my son and show him and try to be a good role model, I’m ahead of the game.

None of the parenting books or classes, though, prepared me for the path my son’s life took with epilepsy. At least when he was born, I had a nine-month lead time to start gathering some information and make an attempt at getting myself ready. The first seizure came out of nowhere. The second, a few months later, felt like someone pushed us down an infinitely deep, pitch black hole without warning. in the beginning, I felt desperate, out of control, and helpless. I couldn’t see and didn’t know what was happening around me. There was no preparation for the descent, and I was afraid of the dark, of falling, of not being able to right myself and save my wife and my son. It was terrifying. It is terrifying.

Even though there wasn’t anything that could have prepared me for what is happening, there are resources available that give us back some control in an otherwise uncontrollable fall. In the years since his diagnosis, we are finding people and information that offer some light in the darkness, just enough light to see that we are not alone.

Most importantly, my family is in this together and we’re finding each other, too. These lessons that I am learning and these feelings that some days overwhelm me have forced action on my part to face these fears, to find what is most important, and to open up to my wife and my son and to show them that I am here and I am present.

Somewhere in that darkness, in the falling, in the fear, I felt a hand, so I reached out for it and I found my wife. I reached out again into the emptiness and I found my son. As I pulled them closer to me, I had one thought:

“Don’t let go. Don’t ever let go.”

November 10, 2016
Epilepsy Awareness In The School – The 504 Plan

This week, my wife and I are meeting with my son’s school to update his 504 plan. A 504 plan is intended to ensure that a child with a disability has access to learning and receives accommodations to help them succeed academically. In my son’s case, his plan outlines breaks, seating placement, a shortened school day, and special assistance for attention and behavioral issues. The plan is put together collectively by the parents, nurse, teacher, and school district with input from my son’s medical team and support services and it is meant to be a “living document” that will change as my son’s condition or capabilities change.

This is our first year with a 504 plan. Even though we’re only a few months into the school year, we are pulling the team together to make adjustments. Some changes are good, such as lengthening his day since his endurance has improved. We also have a better sense of how he handles the day, so instead of basing his breaks strictly on a time, we can place them after harder tasks so that he can spend more time in the classroom with his peers. But we also need to address some issues that many parents of children with epilepsy face when trying to get the right services for their child.

Looks Can Be Deceiving

Most of the time, if you look at my son, he looks like a normal, healthy kid. I am extremely grateful for that, but it makes requesting services for him difficult because he doesn’t look “look sick”. Epilepsy is included in the class of conditions called “invisible disabilities”. While a seizure itself might be external, many of the effects surrounding epilepsy are internal. Fatigue, depression, and problems with attention and cognition are just some of the issues that my son deals with every day. On the outside, he might look like a normal 7-year-old boy and it’s easy to want to treat him that way. Too many times my son doesn’t get a break that he needs because he “looks fine” but, by the end of the day, he’s so physically exhausted that, not only is he not actually learning anything, he has more seizures that night and the next morning that cause him to start the next day already exhausted. It’s only after

Epilepsy is included in the class of conditions called “invisible disabilities”. While a seizure itself might be external, many of the effects surrounding epilepsy are internal. Fatigue, depression, and problems with attention and cognition are just some of the issues that my son deals with every day. On the outside, he might look like a normal 7-year-old boy and it’s easy to want to treat him that way. Too many times my son doesn’t get a break that he needs because he “looks fine” but, by the end of the day, he’s so physically exhausted that, not only is he not actually learning anything, he has more seizures that night and the next morning that cause him to start the next day already exhausted. It’s only after a few days following seizure-filled nights that my son physically fits the “sick kid” profile.

Not All Epilepsy Is The Same

Epilepsy covers a broad range of seizure disorders. A teacher mentioned that she had a student with epilepsy that would have a seizure, sleep at her desk, then wake up and be fine. When she described that experience, she did so in a “don’t worry, I clearly know epilepsy so I’ve got this” tone that raised the “you don’t got this” alarm bells in my head.

Epilepsy is more than just seizures and there are an infinite number of variables surrounding the seizures that make each case unique. My son rarely has seizures during the day, but depending on how tired he is, he may have more at night and in the early morning hours, which affects how rested he is going into the next day which perpetuates the problem. The state of his brain at any given moment dictates his behavior and his ability to retain and recall information. His head is constantly swimming in medication and the side effects of those medicines are exacerbated depending on his cognitive load, seizure burden, and his physical condition. So not only are not all cases of epilepsy the same, but people with epilepsy can show a wide range of symptoms and effects on any given day.

Not Everything That Looks Like “Normal Behavior” Is

“All kids his age…” Anytime someone starts a sentence with that phrase, I know that I’m going to have to break out the soapbox. First, “all kids” don’t do the same thing. But most importantly, the behavior that looks like the “normal” attention problems of a first grader are actual misfirings of the neurons in my son’s brain that are preventing him from recalling any information. The glassy eyes and the “no one is home” look could be the result of a seizure or the way that his medicine is affecting him today so his extra-slurred speech and his frustration trying to piece together a complete thought are not normal development problems, either, especially when they vary throughout the day.

Even with the best intentions, treating something as “normal” has both the risk of setting my son up to feel like a failure because he can’t control what is happening to him and prevents the identification of what is actually causing the behavior and the ability to address that cause.

Things You Can Do

We are very new to this world, but we are extremely grateful to have a wonderful support network around us and to have had many people go before us and share their lessons. To continue on in that spirit, here are a few of the lessons that I have learned that may help you navigate this long, difficult road.

Have The Conversation

Balancing my desire to have the world treat him as a “normal” kid and making him feel like a normal kid with the reality that he has special needs is a challenge I face every day. Not everyone else does or has a reference for what that means. Having a dialog with the teachers and the school district and talking about their perceptions is an important piece of having everyone on the same page. “It’s great that you have seen a seizure, but here is how my son is different from that other student.” As the teachers have more interactions with my son, and as we continue to talk about what they have seen and what things we are seeing at home, we’ll all have a better picture and be able to adjust the plan to better suit my son’s needs as they continue to change.

Have The Information

My wife and I have talked leading into this meeting about what is working with his current plan and what isn’t working. We’ve talked about what things we need to bring up, how to bring them up, and what documentation we need to provide to support our position, and we will have that documentation available. Doctor’s reports, neuropsychological tests, reports from wraparound services. Perceptions are hard to change but the best way to support the request for services that your child needs is with data.

Have A Support Network

One of the best resources that we have available to us is our support network. Other parents that work tirelessly to navigate the system, social services through the hospital and the state, and epilepsy groups such as the Epilepsy Foundation of Eastern Pennsylvania that have programs to bring epilepsy education into the classroom. This network provides the guidance and information we need to ensure that we are asking the right questions and asking for the right services for our son. In some cases, we’ve brought people from this network into these meetings. In the end, we have built a team that we can leverage to do what is best for my son.

Have The Courage To Fight

If you’re averse to conflict like I am, get over it. It may seem like the system is set up to oppose these special services. They cost money, they disrupt the normal flow and structure of the school day, and especially with an “invisible disease”, the system may try to convince you that your child doesn’t need these services. As we’ve been told many times, there is no one that will be a bigger advocate for our son than us. Be that voice. Partner when you can. Fight when you must.

Additional Information

There is a lot of good information about what to ask for in a 504 plan, and I wanted to share these links that I found useful. If you have other suggestions or resources to share to help other parents going through this process, please share them in the comments.

http://www.greatschools.org/gk/articles/section-504-2/

Sample 504 plan for epilepsy: http://www.epilepsynorcal.org/wp-content/uploads/2015/07/Sample_504.pdf

NEXT UP: Be sure to check out the next post tomorrow from Eisai/Sean at livingwellwithepilepsy.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 November 30 at 7PM ET.

November 3, 2016
Why I Signed Up For A Half Marathon

I used to hate distance running. Growing up, I was a sprinter. The act of running was confined to short, powerful bursts, and it was over before my brain could register what was happening and commanded me to stop. That style of running served me well in sports and in getting away from my sister.

When I joined the Army, I knew there would be running but I felt misinformed as to how much running there would actually be. On the first morning at 0-dark-30, I discovered another level of distance running. I also learned that you could run up the same hill multiple times without ever running downhill. That experience challenged my sense of physics as well as my body every day for eight weeks. Filling up the rest of the day was running between buildings and tasks any time we were in a hurry and, in the Army, you’re always in a hurry. While the amount of running went down after basic training, there were still physical fitness tests that included a two-mile run at a pace that caused my lungs to burn. I wish had a fitness wearable to track all those miles. I would have rolled the digital odometer more than once.

When I left the Army, I couldn’t escape the running. I worked in an office of young, single twenty-somethings and there was always a 5K on the beach to support the whales, or the dolphins, or the turtles, or a 5K to support people that run 5Ks. After doing so many charity runs, I just kept running until running had become a core part of my workout routine.

I’m still not very good at it and it’s rare that I do a distance greater than a few miles, but the mental block that prevented my younger brain from enjoying the experience seems to have faded and my 5-mile jog along the water in Seattle has become a favorite tradition when I visit.

Five miles, though, is considerably shorter than the 13.1 miles that I’ll need to do to cross the finish line in November. When I think about how far I will have to run, I get nervous. When I look at the calendar and when I see that there are only a few weeks left, I get discouraged and negative. There’s not enough time left to train. I can’t do this. I start to question my life choices. Well, at least the one about signing up for the event.

Why, then, did I sign up?

Sometimes after a hard run, maybe it felt longer or I stopped more times than I wanted to, those fears and doubts come rushing in. But as I painfully climb my way up the four steps to our apartment, when I use whatever energy I have left to push the door open, I’ll hear “Daddy, how was your run?”

No matter how far I ran or how hard it was, I’m instantly energized. I don’t think about the pain or the negativity or the nerves. I think about my son and why I am running.

My son wakes up every day and takes a handful of pills. He may have already had a few seizures that disturbed his sleep. He has to will himself to get ready for school. He eats his high fat, mayonnaise and soy flour donuts and drinks his vitamins that sometimes upset his stomach. The drugs kick in and his brain swims in mind-altering medicine. His school is crowded, loud, and hard, but he walks through those doors and up those stairs and waves back at us as he passes through the glass atrium with a smile.

I’m running for my son. I’m running for that smile. I wanted to do something hard because he runs a marathon every day. I want to see my son at the finish line and tell him that I did it for him.

October 20, 2016
What Can’t Be Measured

We sat in the windowless office of the neuropsychologist’s office waiting to hear the results of the daylong series of cognition tests that my son took a few weeks before.

Like most parents, I know my son is intellectually gifted. I can easily point to instances where he figured out a hard problem that he shouldn’t have or learned a new concept much more easily than I could have. Genius? I don’t like to use labels, but since you brought it up, let’s go with it.

In the previous two years, however, my son’s brain had been through a lot. Seizures. Status epilepticus. Toxicity from an adverse reaction to medicine. For a few days, it forgot how to move my son’s body or form words for him to speak. In many ways, we had to start over, helping him form sentences and complex thoughts. Helping him put ideas together in the right order or to remember a simple sequence of steps. After everything he had been through, after having been picked up and spit out by a tornado, we sat in that office to find out where he landed.

“Overall,” the doctor said, “your son is remarkably consistent.” It took me a few minutes to absorb the word and process its meaning. I had expected the results of the test to fall on either extreme of the spectrum. Either he was back to being a genius or his brain was irreparably damaged, but consistent?

Sensing my confusion (probably aided by my snarky “Oh, my son is perfectly adequate, like buttered toast.” comment), the doctor went on to explain that the tests showed that, aside from a few areas that needed extra attention, my son was “about average.”

The higher you climb, the further you have to fall. Selfishly, that was the first thought that came to my head. My genius son who was destined for the stars had been forced back down to earth with the rest of us by a cruel twist of genetic fate.

It was only after a few minutes that I realized what a gift I had just been given. My son was “about average”. After two years of seizures, and status, and side effects. Two years without consistently going to school, of hard work at home teaching him to read and to write and count. After all of that, my son managed to come out “about average”.

It was a miracle.

As I thanked the doctor for her time, she added that she enjoyed spending time with my son. She commented about how hard he worked, even though she could tell that he was tired. Her mouth turned upward into a big smile as she told us how he made her laugh. Weeks removed from the time she spent with him and after seeing countless kids in between, that smile showed that my son had left her with something more than a score on a piece of paper.

Our neurologist had also taken time out of her day to join us in the meeting. She has been an amazing ally and supportive influence who sees what is special about my son. That evening, we received an e-mail from her that said:

I wanted to emphasize that this does not predict where he will go in the future, and there’s a lot of wonderful things about him that cannot be measured at this time given his young age and some of the best things in life just can’t be quantified.

Exactly.

October 13, 2016
What Got Me Here

“How are you doing?”

It’s such a loaded question. I fear that if I gave the real answer, it would overwhelm the person who asked it and they would never ask again. I’d be surrounded by people who were all too afraid to ask how I was and I’d feel more alone than I already do.

Most people get the obligatory “Good, thanks, how are you?” Closer friends may get more of the story. Maybe not the full story, but some of the mechanical bits about how tired I am because I never really sleep. But we don’t talk about how sad I am, or how much I worry about the future or what would happen if something happened to me? I’m not sure that I even talk about that with my wife as much as I should.

It’s isolating, this not wanting to burden the people around me with the depth of these issues. Besides, I’m a man. It’s not in my nature to share. We internalize, and apply logic, and try to solve an impossible problem. We certainly don’t talk to other people about it. It’s a sign of weakness. Even if other people are going through exactly the same thing and talking about it would be the high tide that raised all ships, it’s better somehow to keep all the boats stuck in the mud.

I know it’s bullshit. At least, my head does. I think. But after so many years of figuring it out myself and seeing where that got me, it’s hard to let go of the idea that the things that got me here are the things that are going to get me to where I want to be. After all, I have a pretty good life. I’ve done some amazing things and traveled the world. I have a Master’s degree and a good job. These successes are the result of my figuring out how to survive in this messy, hard and sometimes cruel world.

Those tactics, though, serve only to protect me from the outside world. Their side effect is to isolate me from the people around me. My wife is going through the same things I am, and when she is looking to me for support and a connection, I’m nowhere to be found, lost in my own inner workings. She may push and poke to see if I am there and I respond by pulling further away and burrowing further into my hole. In the end, we push each other away when we should be moving towards each other, we are left angry and frustrated when we should be comforting and empathetic, and we find ourselves alone when we should be together.

“What got you here is not what will get you to where you want to be.” That is the type of insight you get when you open yourself up to guidance and support. Asking for help is not a sign of weakness. It shows my commitment to my family and my belief that the stronger and better connected the unit is, the better capable we will be to face what is in front of us together. It shows that I don’t have the tools to solve this impossible problem and that it’s important enough for me to develop a new set of skills. It’s setting a good example for my son so that he doesn’t follow the same path of pushing people away and trying to do it all himself. It breaks my heart to think about the difficulties that he is going to have in his life and the idea of him facing them alone.

What got me here is not what will get me to where I want to be. It’s time to work on what will get me there, together with my wife, my family, and my friends.

September 29, 2016