special needs Archives - Epilepsy Dad

Little Boxes All The Same

And the people in the houses
All went to the university
Where they were put in boxes
And they came out all the same
And there’s doctors and lawyers
And business executives
And they’re all made out of ticky tacky
And they all look just the same.
And they all play on the golf course
And drink their martinis dry
And they all have pretty children
And the children go to school,
And the children go to summer camp
And then to the university
Where they are put in boxes
And they come out all the same.
Little Boxes by Malvina Reynolds

Fans of the TV series “Weeds” might recognize those lyrics from “Little Boxes” by Malvina Reynolds. That song plays in the back of my head every time I have a conversation about how my son struggles in school.

The systems we have in place aren’t designed for individual people. They are designed for boxes. These boxes are generalizations, collections of people who are enough alike to be treated all the same. Alike enough, but not exactly the same.

Generalizations make it easier for our brains to make decisions. Our ability to generalize is a useful skill when we need to make a decision quickly, such as deciding if the object in front of us is a threat. It serves a purpose and works well in many situations. But there are times when generalizing doesn’t work…when someone doesn’t fit cleanly into a category…that requires more intentional, deeper thinking.

But that takes work. It takes effort. It involves contemplating risk and feeling unsafe. As a result, as a society, we don’t do it enough. We certainly don’t do it enough when it comes to educating our children.

It’s clear, as we look for a school that is a better fit for him, that my son doesn’t fit into one of the boxes set up by our educational system. He’s not a traditional student. He’s doesn’t have just a learning disability, or just a behavior or attention disorder.

At many schools that we’ve talked to, they have boxes for those types of students. On the side of each of those boxes are instructions for what to do with the students inside. There is guidance on what to expect from them, how to teach them, and how to measure their progress.

We’ve spent the last seven years trying to fit our son into one of those boxes because that’s how the system is set up…it’s the only way that it knows. But each time, my son fell to the bottom of the box and was hidden behind the other children…the children who are better fits for those boxes and who the system knows how to handle.

When it was clear that my son didn’t fit into a box, the schools would remove some of the expectations from him that applied to the other students. By removing those expectations, he would look more like the other children and could stay in a box longer. Their goal was to keep him in one of the boxes they already had because it was easier than trying to figure out how to educate him as an individual.

But removing expectations had the opposite effect. Instead of helping him work his way back to the surface, it weighed him down. Eventually, he’d sink so deep into the box that he was invisible. It was up to my wife and I to reach down into the box to grab him and pull him out. But even then, that just meant we had to try a different box even though we know that there isn’t one that he belongs in.

Because he’s not the same. He’s one in 7 billion.

Let Him Fail

We moved my son to a virtual charter school for 5th grade.

His previous brick-and-mortar school failed him. Although it gets credit for being one of the best public schools in the city, that only represents the experience of kids without special needs. Our mass education system and the temples to its delivery are designed for the kids in the middle, not at the fringes. My son is definitely at the fringes.

His stamina, comprehension, and retention are all affected by his condition, whether it’s the seizure and epilepsy or side effects of the handfuls of medication he takes every day. Rather than figuring out a way to teach him in a way that helped him learn, they removed expectations from him. They hid behind the vague description of grade level and the wide ranges of “average performance” to try to convince us that he was where he needed to be and to abdicate their responsibility to teach him.

For four years, we tried to exist within that system. Even when we were finally able to get an IEP (individualized education program) plan, his “performance” meant that they didn’t need to include academic goals because he was on “grade level.” We continued to watch our son drift further behind his peers, socially and academically. But he continued to show up. He showed up in a building filled with energy that heightened his anxiety. He showed up after having seizures, while being exhausted, and while being lost.

When the pandemic started and the school moved online, we saw a glimmer of hope. The schools were struggling to transition to virtual learning, and many of his classmates struggled to follow along the same way my son felt every day. It also removed the need to go to a building every day that flooded him with noise and stress and drained him. He still wasn’t learning, but at least he wasn’t learning in a more comfortable environment.

As the school year was winding down, we reevaluated our options. We had looked into virtual school before, but we felt like the in-person experience was more important to help with socialization. But because of the pandemic, the increasing level of anxiety from going to his old school, and his academic drift, we decided to make the move.

The way our virtual school works, the kids have a teacher, but they also have a “learning coach,” which in our case was my wife. The learning coach is supposed to be there to monitor the child’s progress and help them meet school requirements, but it quickly turned into a full-time teaching role.

There was a gap between hearing the material in class and completing assignments that my son couldn’t cross. My wife had to learn and then teach the material to my son and, even then, he struggled to complete the assignments. To finish the assignments, she guided him through every subject, through every assignment, and through every question on each assignment, just to get them done. He spent a few hours a week virtually with a tutor. We tried to keep him caught up but, with little retention, we found ourselves falling further behind.

It became clear early on how difficult school is for my son and how much of a disservice his previous school had done by not understanding his needs. We didn’t fully know because we never truly saw what was happening.

We had the best intentions. We wanted to keep our son moving forward. We wanted him to feel successful. But we started burning out. The combination of an unsustainable amount of work and the frustration of watching our son struggle was too much. By doing much of the work for him, we also inadvertently hid where he was academically. The school wasn’t able to evaluate him because, on paper, it looked like he was keeping up.

That’s when we realized that we needed to do something that goes against every fiber of our being. We had to let him do it by himself. We had to let him fail.

Logically, I get it. The school needs data that reflects where my son stands. Once they have the data, they can adjust his education plan to better match what we can expect from him.

Emotionally, it’s loaded. I have my issues with perfectionism, with being judged and graded, that I project onto him. I’m worried that we haven’t created a safe space where he understands that his grades don’t reflect on who he is as a person. I hope we have, but that’s one of those things that will take years to play out.

The greater fear, though, is that the school will say that there is nothing that they can do for him. And then what? There are no other schools in the city that will take him. Even if there were a private school that could accommodate him, it would be outside of the city, and we likely couldn’t afford it. Even if we moved and found the money, which is also unlikely because the city housing market is terrible, we’d be in the same position, just somewhere else.

Maybe that’s projecting out too far into the future. We don’t know what we don’t know. What we do know is that this isn’t working, and it will have to get worse if it has any chance of getting better.

We have to let him fail so that we can find a way to help him succeed.

Giving Back And Getting Back

Recently at work, I had an opportunity along with a handful of colleagues to speak to a group of high school students with special needs. The goal was to share our experiences working at a large company, to talk about our background and how we got to where we were, and to highlight practical skills we thought helped make us successful.

When I introduced myself, I mentioned that my son also has special needs. I could see that look of connection on the students’ faces. When I shared that he has epilepsy, one of the students in front interrupted me. “I have epilepsy, too,” he said. “What kind does he have?”

“Generalized seizures, ” I replied. “Refractory…we’ve tried a bunch of different medications but he still has seizures.” The young man paused, then mentioned his current medication. I gently interjected and suggested that we talk more after the other speakers. He smiled and nodded, and I continued.

The kids were great. They were attentive. They were curious and asked questions. And they were gracious. After each speaker, the students clapped enthusiastically.

After all the speakers had gone, the floor was opened for questions. Two of the students asked technical questions about platforms and architecture. Others asked questions about our company and our products. They asked what kind of jobs our company had. And then one student asked if our company would hire someone like him…someone with a disability.

The student who asked it was one that I had chatted with before the event. He asked about how much math I needed to do for my job because he wasn’t that good at math. I am surrounded by people with PhDs in math, I thought, but I told him that it depends on the type of job and that our company has a lot of different types of jobs. Now he was asking if our company would consider including someone like him. Someone like the other kids in the room. Someone like my son.

I didn’t know how to answer his question so I rattled off a list of facts about my company. “Well, our head of accessibility is blind,” I stated. “And I know other people in the company who have other conditions that don’t prevent them from working here.” I mentioned our employee resource groups, including our “Abilities Network” that builds a community around special needs, except I used the word “disabilities”.

That was when the student with epilepsy spoke up. “They’re not disabilities, ” he said. “People like us, and people like your son, we can do anything we want to do.”

I stopped talking and I listened. I listened to this teenager as he spoke directly to me about a hopeful future for my son. It was as if he saw right into my fear about the future and wanted to let me know that it was going to be okay. It took me so off guard that I had to struggle to keep my composure.

When he was done, I thanked him. Because I know that everything he had said was a gift for me. A gift to take home to my son. A gift to carry forward in my life. A gift to share with the people around me.

I walked into that room to give a piece of myself to those students. I wanted to tell them about my story and my son’s story to connect with them and to inspire them. I didn’t expect to get anything in return, but I got back as much as I gave.

Maybe more.