Taking A Chance Or Playing It Safe

I should have known there was something wrong when my wife texted me that our son had a seizure in school. Seizures during the day are rare for him, but I thought that maybe we wore him out sightseeing with his cousin who was visiting over the weekend. That was an especially bad day to break from his nocturnal seizure pattern because that afternoon he was supposed to be back on the ice for his first hockey class since his seizures started more than two years ago.

When we lived in Colorado, hockey was all this kid wanted to do. We played hockey on the floor since he could walk. We even made a movie about it.

He started skating when he was around three, and he started his first hockey class just before we moved to Philadelphia, which also happened to be the time his seizures started. With how bad things got, hockey and skating were out of the question. Taking away something he loved so much was one of the cruelest things that epilepsy did to him.

It took almost a year, but once he started to regain his balance and stamina, we found him a coach to do off-ice drills with him. We continued to play hockey on the floor or at the park, but he would always ask when he could get back on the ice. I didn’t have an answer.

After nearly eighteen months, we let him back on the ice. It was only for short periods of time because his balance, stamina, and attention issues still prevented anything too rigorous, but it was something. To a kid that loves hockey more than anything else, though, it’s just skating. There is something different about doing it in full pads, with a hockey stick, and surrounded by other hockey players and we weren’t there yet, although that was about to change if he was well enough to go to this new class. After more than two years, he was about to return to where he was before the seizures started, which is why the timing of the daytime seizure was extremely unfortunate.

We decided to see how the rest of the day went. After school, he took a nap and my wife said that he seemed fine after he rested. We took the chance and she brought him to the rink and I left work to meet them. As I walked in, I saw my son scan the room and realize that he was in a locker room, surrounded by other hockey players. He was so excited that he trembled as he put on his gear. By the time I got there, he flashed a smile and asked me to help him finish getting dressed. Apparently, mommy didn’t know the order things had to be put on in and he had to keep taking something off in order to first put on the thing that should have gone before.

Finally dressed, he tucked his mouth guard into his toothless smile, grabbed his stick, and headed to the ice. It took all he had to not sprint, and he would have if the ice were further away. But he walked up the steps, past the bench, through the door and, finally, onto the ice. He skated around for a minute to get a feel for the ice and then skated over to his coach with the rest of the team.

It took all I had to not burst into tears on the bench. My heart was filled with such joy to see my son so happy. We do a lot of cool stuff as a family, but my son also does a lot of stuff that other kids don’t have to. Dealing with seizures, doctor’s appointments, therapy, an impossible diet, more therapy, more testing. He doesn’t have much control over even basic things that his peers do and, for a while, epilepsy had taken from him the one place where he could be himself and do something that he loved to do for himself. But there he was, on the ice, smiling and sending me an occasional thumbs up (which is really difficult to do with a hockey glove on) as he did the drills with (and better than) the rest of the kids.

Halfway through practice, though, from across the ice, I heard the sound that I dread every morning and I saw my son slump forward onto the ice. The coach moved towards my son and I yelled, “He’s having a seizure.” “When?” the coach asked. “Right now, ” I replied. As the coach knelt down, my son rose to his feet. I motioned to the coach and he had an assistant help my son to the bench. We sat him down and went through the protocol. “Do you know what happened? Do you know where you are? How are you feeling? Which way is your brain going?”

I told the coach that my son was okay and that he needed a break. The coach mentioned that he’s a nursing student and just happened to start reading about seizures and epilepsy medication. Serendipity. After awhile, my son told me he was ready to go back on the ice. As a parent, I felt faced with an impossible choice. Should I put him back on the ice on a day where he is clearly having more seizures and risk him getting injured? Or should I play it safe and take him home and take away the joy he was feeling? I glanced at my son who was watching the other kids on the ice and I made the heavy choice to let him rejoin his team. As he skated towards the coach, my heart raced and I watched his every move without blinking. Every fall was agony. Did he just fall or did he have another seizure? Thankfully, he would pop right back up each time and rejoin the drill. When class ended, I let out a huge sigh of relief as my son skated over to me, gave me a fist bump, and stepped off the ice.

By this time, he was exhausted but he took off his gear and I helped him put it back in the hockey bag. His eyes were a bit droopy, and I could tell that he wasn’t really there. He had given everything he had to be on the ice and his body and mind were starting to give in. It’s a blessing and a curse that my son wills himself through the things he wants to do and the things we ask him to do. I wish life were easier for him.

When we got home, I put him on the couch and made him dinner. He ate quietly and watched a little television before bed. As I went to get his evening medicine, I noticed that his morning doses were still in the pill dispenser. I asked my wife if she had given him his meds. It turns out, she didn’t. The daytime seizures, the exhaustion…we found the culprit.

Mistakes happen. It’s a lot to juggle four doses of multiple medications a day, a special diet, seizures and the normal chaos that comes with a seven-year-old boy. I felt terrible that the first time back on the ice, his head must have been going haywire. He had seizures. He had to come off the ice. He wasn’t really present. He barely remembered being there. All because we made a mistake on the day that he was finally able to go back to his first love. The poor kid can’t catch a break.

We gave him his medicine and the next day he was thankfully back to normal. I’m still not sure if we made the right call keeping him on the ice, and I suspect that we’re going to have a lot of similar decisions to make in the future. But that’s just part of managing epilepsy, and trying to give my kid as many things back that his condition has tried to steal from him. He won’t get it all back, but every little bit counts.

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.

Things No Child Should Get Used To

A few weeks ago, we went to the children’s hospital for an appointment. We walked through the large, automatic doors and up to reception where my son said hello to Mary (they’re on a first-name basis), who commented that she liked his red hair. Without needing to ask, she pulled our family up from memory on the computer and printed our visitor badges.

Check-in completed, my son led us up the main staircase to the second floor. At the top of the stairs, he turned left and headed down the long hallway towards neurology. He knows his way around the hospital and which building to go to for neurology, or speech, or another test. As I followed him down the hall, it made me sad to realize how well my son knows his way around that place. A child should know his way around a toy store, not a hospital.

As we turned the corner, we passed phlebotomy. There were nervous parents and children in the waiting room, and seeing them sitting there made me think of the times we were in those chairs. The first few times, we were nervous, too, but after too many visits, we got used to it. Now, my son likes to talk to the phlebotomist as she prepares the needles. He politely says “No, thanks” after she invites him to look away, and he watches as the needle pierces his skin. “I never cry”, he says, which is almost true in the hundreds of times he has been pricked and pierced. “You should come here more often to show our other patients how to do it,” we’ve heard more than once. “Ok, ” my son replied, “I’m really good at it.” As I remembered him saying that, I felt sad. That’s not something a child should be good at.

He knows the routine of the physical exam, not because he has had years of exams under his belt, but because he has had so many in the short time he’s had epilepsy. These doctor visits, the trips to one of his therapists, the emergency room visits, they’re part of his routine, those things he’s done so many times now that he just does them because, well, that’s what he does. All these things are now just part of our lives, are part of his life, like eating, and breathing, and going to the park. He wakes up and takes a handful of pills, and another handful at night, without question, because that is what he has to do. He doesn’t get to eat the food that his friends do, and he can’t just have a snack, it has to be weighed and measured because that’s how it is and he’s used to it. He doesn’t look at a restaurant menu because he knows he can’t order from it, and he’s used to that, too.

He’s getting used to having seizures. He’s crying less after he has one in the middle of the night and more regularly just putting himself back to sleep. If he forgets to put on a pull-up and needs to change, I’ll often catch him on the floor halfway through the process by the time I get to his room. He’s getting more aware of his seizures, too. He had one on the basketball court the other day. When I asked him if he was okay and if he knew what happened, he replied, “I had a seizure, but I’m ok.” It rolled off his tongue so casually it was as if he was describing a shot that he missed or if he had tripped on a rock and fell.

On one hand, I’m grateful that he has accepted these restrictions and these changes in his life so easily. I am not sure that I have the strength to constantly explain to him why he has to do these things when I am still struggling with my own questions. Why is this happening to him? Was it something that came from me? Is this our lives forever?

On the other hand, if I think about the things that he has gotten used to, it breaks my heart. This condition has taken away too many things from the one person who I desperately wanted to open the world for, and I’m having a hard time resolving that discrepancy.

I try to think about the positives in this situation, but most of the time I just see a little boy who has gotten used to too many things that he shouldn’t have had to.