Category: lifestyle

Always Something There To Remind Me

Epilepsy has infiltrated every aspect of my son’s life, from the time before he wakes up to when his head hits the pillow at the end of the day and beyond. Every new day brings with it reminders of his condition, and every interaction, every task, every breath carries inside of it a burden that he must overcome.

Before my son even leaves his bed, there is an occasional seizure streaming from the camera we installed in his room to the iPad at my bedside. When he comes out of his room, his first stop is in the kitchen so that he can take his first handful of pills of the day. We spend some time together, constantly evaluating his behavior to see if his brain is firing properly, looking for those signs to see if he is going to have a good day or a bad day. Every morning is filled with these little reminders of his condition.

From there, it’s on to breakfast. Usually once a week, we spend a few hours making batches of pancakes so that he can have a keto pancake with a small amount of fruit. The diet has a high-fat requirement that, if we can’t incorporate the fat in to the food itself, needs to come from a straight shot of oil. My son likes the pancakes because they incorporate all the fat and don’t require any extra oil. If there are no pancakes, breakfast, like most of his other meals, involves looking up each component to find the ketogenic exchange rate, cutting and weighing everything to within a tenth of a gram including, unfortunately, oil. Every meal is measured this way, so every meal becomes another reminder of the challenges he faces and the things he must do to manage his epilepsy.

Many other tasks during the day involve helping him stay focused, or breathing to keep his body under control, or sleeping to recover from the exhaustion that is always present on his face…all reminders, every time we look at him, about how present and real and exhausting epilepsy is.

Before he goes to bed, he counts out another handful of medicine before making his way in to his room with just enough energy to brush his teeth, put on his pajamas, and crawl in to bed. The wash of fatigue that swallows him as he is finally able to just switch off his brain serves as the final reminder of how much effort it takes him to make it to through his daily challenges.

As he drifts off to sleep, I know that we have to do it all again the next day.

There is more, though, to our day than just these negative reminders of my son’s epilepsy. There are also the reminders of how lucky we are.

Those pills that he takes, his first and last activities of the day, are keeping his seizures under control. The magic diet, with all the extra effort and measuring and restrictions, also helps his seizures and cognition. That he is able to read, and is learning at all, shows how much he continues to improve.

Every morning that he is able to get up and go to school, and the fact that his body is strong enough to ride his scooter to school, is nothing short of a miracle. That he has friends in school and that the kids are sincere when they say goodbye to him fills my heart with such gratitude, as does him having individual support in school and an essential, loving aid when he gets home. He has regained much of his physical ability, allowing him to ice skate and play hockey in the basement, two of his favorite things. Every time he puts on his skates or scores a goal in his stocking feet downstairs, it’s a reminder that epilepsy has not taken everything from him.

Tucking him in, these reminders and milestones make me grateful that we had another day together, and grateful that we get to do it all again tomorrow.

January 28, 2016
Actually, My Son Is Not “Fine”. But He Is Amazing.

I spoke with an administrator at my son’s school, talking about how the year was going so far, asking about how the replacement for his one-on-one was going, and just generally checking in. The administrator said that my son seemed to be doing “fine”.

“Actually, ” I said, “he’s not fine. He has epilepsy. Some mornings, he has seizures. Then we give him his anti-epileptic medicine and try to help him keep his attention focused long enough to get dressed for school. Luckily on most days now, he can stomach breakfast. The diet that he is on is really hard on him, but hey, it helps with his seizures. Then he walks or, on good days, rides his scooter a few blocks to school. We’re grateful that the short trip doesn’t tire him out as much as it used to when school first started. Then we drop him off in to a class that has 29 kids and hope that his one-on-one (when he had one) cares enough that day to help him focus on his class work and hopefully pay attention long enough to pick up what is being taught that day. He can’t follow more than one direction at a time, and it takes an enormous amount of energy to stay focused for that long. By mid-morning, his brain is already exhausted and his body starts to follow, but he makes it to lunch, where he usually just watches his classmates eat. Recess, though, is his favorite part of the day, where he can play with his classmates with whatever energy he has left, although I think he usually wills himself to fake having energy so that he can just be with other kids. Then he packs up, heads home, has a small snack before his body and mind give up and he has to take a nap, just so he can wake up and make it the rest of the day. That’s not what I call fine.”

The administrator was caught off guard by my rebuttal. “I just meant that academically he seems to be where he should be.”

“He’s doing well academically because after he wakes up from his nap, our nanny reads and works with him to help reinforce what we’re hoping he’s learning in class and missing from the afternoon sessions. By the time I get home from work, he’s usually exhausted mentally again, but we get to play while dinner is in the oven. Well, unless it’s our night to go to behavior therapy. After dinner, we pop him full of pills again, head to bed, and then repeat the process for the foreseeable future.”

I don’t blame the administrator. He only catches glimpses of my son throughout the day. With other disabilities, there might be some external indication that a child is different, but with epilepsy and its related complications, you may not catch the signs unless you have a reference, or spend enough time with a child, or happen to catch a seizure. But while I don’t blame him, I also wanted to dissuade him from thinking that my son was just another kid and, just because he wasn’t seizing at school, that he was “fine”.

“Fine”. “Fine” doesn’t reflect the struggle he has to keep control of his body. “Fine” doesn’t show the foggy side effects of his anti-seizure medicine that clouds his brain, or the complicated, restricted diet that sometimes turns his stomach. “Fine” doesn’t capture how hard he has to work to stay focused or follow direction or put things in sequential order. “Fine” doesn’t get the help he needs at school so that he can try to keep up with the kids that aren’t filled with brain-altering drugs or seizing every day. “Fine” doesn’t convey how difficult it is for my son to make it through the day.

And yet, he does.

No, my son is not “fine.” But he is amazing.

January 14, 2016
Not Having To (Always) Say You’re Sorry

I grew up thinking that everything had to be perfect. Between the nuns at my Catholic school and my parents at home, I walked a very thin rope of perfection, calculating each step so as not to fall and raise the ire of either side. I wasn’t perfect, of course, and I probably spent just as much time suffering the consequences as I did running from them. Today, the legacy of that rigid black-and-white right-and-wrong upbringing causes me to be extremely hard on myself.

A few weeks ago, we were putting ornaments on the Christmas tree. My son was enthusiastically picking up ornaments from the pile we made for him and rushing to place them on the tree. Inevitably, one of the fragile glass bulbs slipped from his tiny hands as he rushed to stand and it crashed and broke on the floor. “I’m sorry”, he said. I told him that he should be more careful and slow down, and he apologized again.

Lately, I feel like I’m always on my son and that he spends most of his time with me apologizing. It’s a terrible feeling for me, and I can only imagine what it feels like for him. What makes it worse is that there are many times when he can’t control his body. When he’s tired, there is a disconnect between his brain and his body that exacerbates the gap that is already present in an average six-year-old.

I have gotten so used to dealing with him when the side effects of the medicine and seizures took away his ability to reason and control his body and I needed to catch everything before it escalated. Now, I can’t step back and let him explore and make mistakes.

He must feel helpless to avoid my disapproving gaze and constantly feel like he’s disappointing me. “I’m not mad, honey, I’m just disappointed” is classically the worst sentence in the history of parenting, and I feel as if I’m delivering it with every dissatisfied glance.

I’m not suggesting that there shouldn’t be any rules or consequences. Now that we’re back among the general population, I see other kids going without boundaries as their parents ignore them, and that’s the other extreme. It’s my job to teach him right and wrong, acceptable and unacceptable. But my response needs to be in proportion to the behavior, and I’m having a hard time letting go of those feelings I had when things were at their worst.

One of our therapists offered a piece of advice that I am trying to put in to practice. She said that if he’s not doing something unsafe, and if what he is doing is not the end of the world, then take a deep breath and ignore it. Especially when an innocent action now feels like one that he did when his behavior was out of control, it makes sense that my alarms would be firing. But that doesn’t mean that every action needs a response. If he is being unsafe, or if he is breaking a house rule (no hitting, for example), then address it. But if he’s flopping on the ground, or his laughs turn in to a scream, then I should take that breath.

I don’t want my son spending his childhood always having to say he’s sorry. What he is going through is hard enough, and I don’t want to contribute to squelching the bright, special light that is inside his heart by making him feel like he needs to be perfect. It’s my job to help guide him along the way to stay on the right path, but it’s also my responsibility to help him be happy and free.

January 7, 2016
Advocating For My Special Needs Child

By the time my son started kindergarten, we had gotten him off another toxic medicine and he started to settle in to the ketogenic diet and a new medication. His behavior began to level off and his seizures happened mostly at night. He still needed assistance during the day, special needs coming from a combination of seizures, behavior, and attention, but the district found him a one-on-one aide that could start the first day of school. Everything seemed to come together just at the right time.

His one-on-one was not specifically trained. I’m not sure she knew what the details of the job were before the first day, so we basically told her that she should keep our son safe, watch for seizures, and help keep him on task if he has a hard time focusing or demonstrating a lack of impulse control. After a week or two, we started to receive feedback from the teacher that the aide wasn’t going out to recess with him, a time where having a seizure would leave him most vulnerable. We also learned that she was making him sit by himself during lunch on those days where his stomach was having a hard time with the fat in his diet and he didn’t bring food, leaving him to sit at the end of the table away from his friends.

Instead of bringing it up to the district, we wrote a list of “expectations” with my son’s teacher and gave them to the one-one-one. She did better for a time, but it was clear that working with children was not her thing and that she was just showing up for the paycheck. There was no warmth, no compassion, and no attempt to get to know our son, but we let it go because at least she was doing something, and our son was doing so much better.

His teacher and the class aide also did what they could, but in a class of 29 children, my son could only receive so much special attention. But again, he seemed to be doing so much better, so we thought, between the teacher, aide, and the extra body that was his one-one-one, that our son was getting enough support because he was in school, making friends, and learning. Things were on cruise control, and we let a lot of things slide.

Last week, though, our son got sick. We already learned early on that epilepsy and sickness don’t play nice together. It was actually the flu that brought us to the emergency room the first time things got bad with my son’s seizures, and where we saw first-hand the increase in seizures that come along with the sneezing, coughing, and runny nose. This time, though, we had a good base of medication and diet, so we weren’t seeing a big increase in seizures, but we were seeing more attention, focus, and impulse control issues.

This happened to be the same week where my son’s one-on-one took a different job. I was told by my six-year-old that his helper’s last day was the previous Friday. No one told us (or his teacher) the the aide had left, so my son was left to find his way in a classroom during a week where he most needed the help.

The episode was our wake up call. The nurses and social workers told us before we started school that, especially with public schools that are desperate for funding, we would need to be our son’s most vocal advocates. But we got comfortable because things were going better than we could have imagined a few months ago. We let ourselves drift in to a state of dangerous complacency because of how well our son was doing and we stopped pushing for what our son needed.

I haven’t been doing it that long, so I’m still learning what it means to be the parent to a child that has special needs. It’s hard enough to watch my son struggle with his epilepsy and related side effects. It’s exhausting to think about the level of effort that will be necessary to stay vigilant and ensure he is getting even the most basic services, nevermind what he needs to succeed. But like the many other parents that struggle every day to navigate the complicated, messy, and difficult world surrounding a special needs child, I’ll be loud and fight for what my son needs. Because if I don’t, no one else will.

December 31, 2015
In Good Times And In Bad Times

I needed to clear up some space on my computer today, so I pulled up a list of the biggest files on my computer. Near the top of the list were a group of movie files with generic names. I clicked on the first one, and it was a video of my son that we made to document his behavior when it was at its worst.

I wasn’t prepared to see the video, and it really unsettled me. Even now, hours later, I’m thinking about the video and how desperate and scared we were. There were no answers for why he was acting the way he way. It could have been side effects of the medicine, or damage from the seizures, or a combination of both, or something else entirely. No one could tell us why it was happening, and no one could tell us if it would get any better.

In the video, he was having one of his typical outbursts. I say typical, but they were typical for where he was, but not typical for the almost five years of life he had before his seizures started. His brain would “go backwards”, as he eloquently put it during one of his lucid moments, and he would start hitting, scratching spitting, and screaming. The picture above was another symptom where his body would take control and he would somersault or flop around on the couch or the floor. The image at the top of this post was of him throwing a toy at me while I filmed the outburst.

On a good day, we would only have a few, short episodes. On a bad day, we’d spend hours holding him down at bedtime. It was agonizing as a parent to see that happen to my child, especially when the outbursts ended with him expressing such remorse for what his body did and, I suspect, terrified that he wasn’t able to control it.

Watching that video, the thoughts that I had lost my son and that his life was going to be nothing more than managing one uncontrollable outburst after another for the rest of his life came rushing back. The feeling of desperation, the praying that there would be some relief, some help for him, some help for us, came back, as well. After a few seconds, I was so overwhelmed that I clicked stop, a luxury I have now that I wish I had back when this was actually happening.

When I got home, I told my wife that I had pulled up the video and that it upset me, and she comforted me like she always does. She asked if I had deleted the videos. I told her I didn’t, but I didn’t tell her why because I didn’t know myself. Am I keeping them to remind me of how hard it was so that I can appreciate where we are now? Are they clinical files incase someone, years from now, can explain to me what they were and why they happened? Do they matter, or should I just wipe them from my hard drive and let Time do the same thing for my memories?

Tonight, I don’t know what I should do with those videos, but I did know what I should do with my son, which is the same thing I’ve done since he was born, in good times and in bad. I laid next to him listening to him suck his fingers as he started to drift off to sleep. I kissed him on the forehead and told him that I loved him more than anything, and that I was lucky to be his father.

December 10, 2015