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.

No Free Lunch

Early one morning, I was sitting in the living room writing when I heard my son leave his room and go in to the bathroom. He was in there longer than usual and I could hear the muffled sound of banging. After a few more minutes, he came out of the bathroom and I asked what had happened. He explained that he was washing the bucket we had given him the night before when he told us he had an upset stomach. He had thrown up in the middle of the night.

This wasn’t the first time this had happened. My son has been on the ketogenic diet for more than two years. The “keto” diet is a high-fat diet used to treat hard to control epilepsy and it’s hard on his stomach. In addition to his seizure medication, the diet forces him to also take vitamin supplements and medicine for reflux, constipation, and acidosis. Constipation, diarrhea, cramping, and vomiting have been frequent visitors since my son was on the diet.

It’s not only hard on his body, it’s hard mentally, too. He can’t eat what we do or, if he does, he has to have a shot of oil or some other fat on the side. And he generally can’t have more of any one thing without adding more oil. He can’t have a slice of pizza. He can’t have a bowl of cereal or a bag of chips. When he’s at a birthday party, he can’t have a piece of cake or candy. We make modifications, like bringing along a “keto cupcake”, but it’s not the same. Because he is who he is, he endures with little complaint.

We make a handful of meals that he likes where the fat is hidden in the recipe. A soy flour and mayonnaise crust for pizza is one of his favorites. With that, there is fat in the crust and oil mixed in with the tomato sauce so he doesn’t need to have oil on the side. But we don’t have many of those meals, so we’ve been repeating the ones we do have for months.

To add dietary variety, the doctors want him to eat more “real” food. But for that we need a source of fat, which is generally a oil. And that’s what we did for dinner the night before that led to the bucket and the early morning cleanup.

We’ve lowered his ratio over the last year so that he needs less fat, but his diet is still more fat than not. I want to get him off the diet completely, but the doctors say it is working. It’s not enough to stop his seizures, but they think it’s helping his overall brain function and raising his seizure threshold higher than it would be off the diet. I’m less convinced, but I’m also the one that sees how hard the diet is for him every day. And there are certain rights of passage with food that I went through as a child. Eating an entire box of Lucky Charms. Folding a real piece of pizza in half and devouring it. Trying things at the farmer’s market. He’s missing out on all of it.

There is an acronym I remember from my economics classes that was also used in the Robert A. Heineken story The Moon Is A Harsh Mistress. TANSTAAFL, or “there ain’t no such thing as a free lunch,” is the idea that you can’t get something for nothing.

When we started the diet, we saw it as an alternative to more seizure medicine. It was supposed to be the prescription that helped his seizures without the side effects. It was supposed to give him a better quality of life. Maybe compared to another pharmaceutical, it did. But it didn’t come without its own downside.

Because everything comes at a price.

Paying The Toll

We were coming off a good weekend. We celebrated my wife’s birthday on Saturday, and we ended Memorial Day visiting friends, having a swim lesson, and staying up a little later to see part of the first game of the hockey finals. We put my son to bed tired but happy.

Just after midnight, the first seizure came. I heard the sound come from my son’s room a second or two before the sound came through the speaker of his monitor. By the time I got to him, it had passed. He was sitting up in his bed disoriented, so I helped him lay back down and waited for him to fall back to sleep.

The next seizure came a few hours later. The next one an hour after that. And the next one an hour after that. It was like aftershocks after an earthquake, except each of them was just as intense as the one before it. He had at least four that I saw, but we learned during the overnight EEGs that we don’t see them all.

When he does anything that exerts an effort mentally or physically, a nap-time seizure or a collection of seizures during the night is likely to follow. We bowled for an hour and he had a seizure during his nap. After a morning baseball game, a seizure. Even though he only goes to school for a few hours, he’ll often have a seizure during his nap.

We tried to explain it to his school. It’s not just about what he can handle in the moment. The exertion carries beyond the activity itself. It show’s up as more seizures, which set him up to be more tired the next day. That lowers his seizure threshold for the next day, too, making him more likely to have seizures or requiring him to spend more energy regulating his emotions or attention. It’s downward spiral that ends with the husk of a boy too tired to function.

It feels like the universe collects a toll from my son based on how much he gets to actually live his life. It imposes a penalty to knock him back down and remind him of his limitations when he tries to exceed them. Someone with uncontrolled seizures shouldn’t play baseball. Seizures. Someone with uncontrolled seizures shouldn’t be progressing in school. Seizures. Someone with uncontrolled seizures shouldn’t be going to the skate park, or an amusement park, or a hockey game. Seizures.

Every time it happens, I question whether we did too much. But I gave up wondering if we should be doing anything at all, because that’s having no life. That’s letting epilepsy win. That’s not giving my son the life and the world that he deserves. So we’re careful and we’re calculated in deciding what to do and how much to do. We do our best to protect our son but let him be part of the world. We introduce as much downtime as possible so that we can distrupt his pattern of exhaustion and let him do the things he loves.

The universe seems committed to collecting its toll, but we’re doing everything we can to minimize how much my son has to pay. Because we’re going to keep on living.