Here We Go Again

Here we go again
Same old stuff again
Marching down the avenue
Six more weeks and we’ll be through
I’ll be glad and so will you
U.S. Army Marching and Running Cadence

I was never much of a runner. I had the look of one. Tall and skinny, with long legs that should have made running easier. I was even a fast sprinter. But anything longer than the size of a football field, and my brain would scream at every one of my moving parts to stop.

Imagine how much fun I had when I joined the army, where nearly everything involved…you guessed it…running. We’d wake up early every morning, head downstairs, and fall into formation. Our drill sergeant and his team would stand in front, bark out a few orders, and then my fellow soldiers and I would turn and follow our leaders, matching the rhythm of our steps to theirs, for however many miles we’d run that day.

A few minutes into the run, one of the sergeants would begin calling out a cadence. Military cadences are rhythmic chants used during marches and runs to maintain a consistent pace, foster teamwork, and boost morale. They help synchronize movements, improve endurance, and build unit cohesion.

They were magic. They kept me focused on the rhythmic call and response rather than the fact that I hated running, that my lungs and legs hurt, and that I should stop. Because I couldn’t stop. I couldn’t let my squad down. I couldn’t let myself down. I had to push through.

One of the cadences, “Here We Go Again,” summed up basic training perfectly: the same grueling routine, day after day. Wake. Run. Eat. March. Train. Eat. March. Train. Eat. Chores. Bed. Every day, for 8 weeks, the same thing.

Anytime I find myself repeating a pattern, especially a challenging one, I think of those early morning runs. I think of that need to push through, to not let my squad and myself down.

Here we go again
Same old stuff again

We’re approaching one of those times. Toward the end of the school year, our son is always exhausted. He’ll have a harder time waking up in the morning and randomly fall asleep in the afternoon. Around the same time, baseball, one of the few non-school activities he still enjoys, starts demanding more energy and mental bandwidth. We also start figuring out what the following school year will look like, scheduling IEP meetings, and talking with his school and the district about our son’s challenges, needs, and potential. It’s mentally, physically, and emotionally draining on the entire family.

Six more weeks and we’ll be through.

Six more weeks until the school year ends. Six more weeks to push through. Six more weeks of having a routine, structure, and certainty. Six more weeks until the story that has been written ends, and there are only blank pages unless we can write down a new plan before then.

It’s exhausting. It’s like those basic training marathon runs, where somehow we’d run in a circle but only be running uphill, defying physics, logic, and any sense of fairness. It tests our endurance and commitment. Parts of my brain are screaming to just stop.

But we can’t stop. We can’t let our son down. We can’t let ourselves down. We have to keep going. We have to fill those pages with a plan for the next year, until we find ourselves again six weeks from the end of the school year with the same cadence echoing in my head.

Here we go again.

Same old stuff again.

Breaking The Mold

Regardless of who actually said it (it probably wasn’t Einstein), at times I feel like I’m living the definition of insanity by doing the same thing over and over again and expecting different results.

At the center of this insanity is a compulsion to fit my son into the world’s definition of “normal”. There is a mold made up of societal norms and expectations that I try to force him into, even though it is clear that the mold is the wrong shape.

Still, I try to make it work because I’m scared that, if I don’t, the world won’t accept him and it will cast him out. Or label him. Or make him feel “less than.” As a result, I correct him when he does something that makes him look different from everyone else rather than celebrating his uniqueness. I spend more time trying to make him work inside what the world expects of him rather than finding ways to make the world work for him. And I keep repeating that pattern, in spite of all the signs that it isn’t working and that it isn’t the right thing to do for my son.

I think that is partly because I don’t know what does work for him. The things I try are the things that are familiar to me. They are the things that I know exist. They are the things that I grew up with because somehow, in spite of feeling very different, I managed to get a traditional education, and go to college, and get a job. I was able to existing inside of the “normal” that most other people seem to also make work for them.

My wife is much better than I am at flipping the narrative and seeing that it is the world needs to change to include our son. She looks for places where our son can feel like he belongs rather than making him fit into any molds. But given the state of the world and its indifference or intolerance to anyone who is different, I can see her frustration and anguish every time the world doesn’t understand him, or us, or our situation.

She’s the reason that we are looking at alternative schools for our son. She’s knew it years ago but no one would listen. I might have thought I was listening, but I was too afraid to act on it because I thought things would get better. I thought I could make my son fit into that mold if we just kept trying. Worse, even when I knew it wasn’t working, my fear led me to just keep trying the same things because it was less scary than going into uncharted territory and discovering that he doesn’t fit in anywhere. I was as accomplice in the notion that we could simply remove a few expectations from him to make him fit the mold better. But all that did was make him disappear.

I am trying to stop the insanity. I am trying to redefine my view of the world and what I expect my son’s path to be because I am seeing that his path does not need to look like my path. His path will be made up of his experiences, tailored to who he is. It’s big and it’s scary and I don’t know what it will look like, and it may take endlessly battling the world to make room for him. But that is something worth doing over and over again.

The world seems intent to prove that it is my son who is the wrong shape, but the world is wrong. My son broke that mold the first time he had a seizure. Actually, he broke that mold the day he was born.

Fewer Choices, Less Time

It feels like we are in a constant search to find a school where my son belongs.

For the first few years, we sent him to one of the city’s best public schools. They didn’t know what to do with him, so he drifted from grade to grade while we struggled to make accommodations for his stunted academic and social growth.

Last year, we moved him to a new virtual school, hoping to alleviate his anxiety that my son felt going to his previous school. While it may have achieved that goal, virtual learning amplified my son’s challenges in the classroom settling and left him further behind. Sitting in front of a computer all day on a video call with a big group of other 5th graders results in a controlled chaos that taxes my son mentally and physically in ways that I didn’t expect.

As a result, we’re once again exploring our options. But the reality is that every time we do this, we do so with fewer options and less time.

When we try a new approach, make a modification, or check out a new school that turns out to not be the right fit, we have fewer choices. The traditional classroom-based, lecture, teach-to-the test education system, which is how the vast majority of schools operate, doesn’t work for my son. He tries so hard, but his difficulty with executive functioning, processing, and retention taxes him to the point of mental and physical exhaustion. That exhaustion makes his processing and retention worse, feeding back into itself until his body and mind tap out and we are left picking up the pieces.

There are other schools, but the ones that have a different teaching method are scarce, expensive, or far away. We called them, though, and talked to the administrators. In some cases, we were told that their school wouldn’t be a good fit. In other cases, we were told that it might be a fit based on our description, but we continue to struggle to get the right amount of documentation to accurately represent where he is. But we can’t get that because we haven’t found a place with the resources or the expertise to make a recommendation for a child who doesn’t fit into a predefined box.

Now, we’re looking at 6th grade. That’s only three years until high school. Three years, and there is no guarantee, even if we find a new school this year, that it will be any different. We’re running out of time to find a place or a way to educate my son enough for him to enter the world. I used to feel like he had his whole life ahead of him, and now I just feel the pressure to find a solution before the system cuts him loose.

I had always expected that someday my son would be like everyone else. I used to believe that, with modifications, we could educate him alongside his peers who didn’t have his challenges. I used to have “normal” as the bar. It’s the same mistake that the education system makes. It’s the same mistake that the world makes.

I don’t feel that way anymore. It’s difficult to predict the future of his condition or to know what he will be capable of as he stumbles through school. We are so focused on finding a way to educate him now that we’re not thinking about college. I’m not even sure that college will be in the cards for him if we can’t find a solution that works for him in middle school and high school, and those grades went from being far out on the horizon to staring us in the face.