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Moving To Australia

Before my son was born, my wife and I talked about moving to Australia. It wasn’t because we were having a terrible, horrible, no good, very bad day. It was because we had been there on our honeymoon and we loved the experience. The idea of packing up and living on the other side of the world seemed like an amazing adventure.

In a way, it’s the same reason we moved to Philadelphia. While it wasn’t on the other side of the world, it might as well have been. Moving from the suburbs to the city. From the Colorado laid-back mentality to the always-moving city. The people and culture are as different as if we had moved to another planet.

At the time, the logistics of moving were easier. I already had a job, so we only needed to pack and find a place to live. Everything else we could figure out as we got more familiar with our surroundings. But we landed in Philadelphia right before my son’s seizures started. After that, the idea of moving became a lot more complicated.

It’s no longer a simple matter of packing up and finding a place to live. “Everywhere” is no longer the list of possible destinations. Our mindset needed to shift from aspirational to practical. The nature and complexity of my son’s condition mandated more specific requirements.

We would have to research the hospitals in the area to get a feel for their ability to support my son. How good is the medical care? Do they have the testing equipment on site, like a video EEG, or would we have to travel to another hospital? How easy is it to get in to see our neurologist?

We also have to do more research on the schools. In the past, we would have asked about class sizes and the quality of the education. Now, we would need to ask more targeted questions. Can they accommodate my son’s special needs? Can he get a one-on-one aide? Is the nurse familiar with seizures and epilepsy? Will the integrate him or isolate him?

Many of the answers to these questions would remove cities from our list of potential new homes. And there are many more questions to ask, each one shortening the list.

In many ways, epilepsy has taken away choices. Where we can live is one area, but there are so many. It also forces restrictions on what job I can take, what activities my son can do, even what he can eat. I assumed that we could build our lives by picking pieces from an unlimited list of options. But instead of the full buffet, we’re limited to the salad bar.

It would be easy to be resentful. It would be easy to see these limitations that epilepsy has imposed on us make and feel like victims. It would be easy to see only loss. Loss of freedom. Loss of choice. Loss of potential. But being where we’ve been, I’m grateful for where we are. I don’t resent what we don’t have or where we can’t go because I know how special what we do have is.

I still like the idea of an adventure. I still think about moving to Australia. Maybe some day, if we can get my son’s epilepsy under control, we’ll be able to move to have that adventure. Until then, we are exactly where we need to be. The dream of living in another part of the world might seem far away. But the reality is that our journey so far has brought us closer together.

Why Graduating Kindergarten Is A Big Deal

Last week, my son finished kindergarten.

A few years ago, I would have let that moment slip by. Honestly, moving on to first grade is pretty automatic and it would have been a normal right-of-passage, like losing a tooth. My wife would have handled the celebration, and I would have smiled and congratulated him while making snarky comments like “it’s just kindergarten” to my wife as she unsuccessfully tried to show me that every moment is important.

When that day finally came, I didn’t need my wife’s convincing. When I walked in the door after work, he ran to me and told me in a big, proud voice, “I finished kindergarten! I’m in first grade now!”. My eyes welled up with tears as I knelt to hug him and told him how proud I was of him for working so hard. “You did it, buddy”, I told him over and over as he squeezed his hug tighter and tighter.

He looked proud of himself, too. Rightfully so. He missed most of preschool due to seizures, side effects, and hospital stays. In the weeks leading up to the start of kindergarten, we weren’t even sure he would be able to go at all. His seizures were still not under control, we were still adjusting medicines, he was still adjusting to the ketogenic diet, and his behavior and attention issues were at their height. Dropping him in to a public school kindergarten with 28 other kids seemed like a terrible idea and one that could do more harm than good.

But we scrambled to get him registered, and to see what services would be available to help him. Technically, none, we learned. I felt like his epilepsy and related complications had come at an inconvenient time, too late for us to get him established as a special needs student and, therefore, not eligible for assistance. I remember thinking “Well, I’d prefer for him to not have epilepsy at all, but I’m sorry that he didn’t get out of the hospital sooner so we could fill out the paperwork.”

It was an unbelievably frustrating process, but we did get him registered and, although the special needs paperwork wasn’t completed, the principal assigned a school resource to act as an aide to my son for the few hours a day that he was physically capable of being there. Until the aide started, my wife was allowed to sit in the classroom with my son, so we had a plan for him to start kindergarten on the first day of school, although with a later start time to allow him to have enough rest to make it through the morning.

As a sign of things to come, on the first day of school, my son woke up early, dressed, at breakfast, and walked to school to start at the same time as his classmates. Of course, he had a seizure getting ready, but he didn’t let that stop him and he found the strength to push through.

He did that all year long.

When his body or mind was fatigued, when he couldn’t find words, or string together a simple sequence of events. When he couldn’t focus on a single task, or stop his body from shaking, or keep his anger and emotions under control. When he felt embarrassed about his special diet and watched the other kids eat whatever they wanted. When he missed chunks of time for therapy, or hospital visits. When he’d go home, exhausted, and sleep for hours, and then wake up and finish his homework and read and just try to keep up. Through all of that, my son woke up, almost every day, ready to put himself through it again.

My son had to work really hard to get to that day, and it was a really, really big deal.

I couldn’t be more proud.

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.