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.

Going Virtual

The fourth grade started so well.

It was the first year where my son had multiple teachers for different subjects, and each of them took a genuine interest in him. They asked how they could best support his learning. They brought us in to talk to the entire grade about epilepsy. We strengthened our relationship with his aide. The new special education teacher showed initiative and commitment by working with the other teachers and us to make sure my son’s IEP was current.

My son seemed to be doing better than last year, too. Even though he had a modified schedule and didn’t need to, he would get up early and be ready for drop-off at the regular time with his friends. He was going to school every day of the week, and we had fewer absences than we’ve had in previous years, too.

Of course, school was still difficult for him. The noise of the classroom and the building triggered his anxiety. The attention issues were still there. He was still drifting further behind academically and socially from the other children. He still worked with his nanny on homework and subjects he missed after he got home and rested. But we found a bit of a groove in fourth grade, more than we had before.

And then the pandemic hit.

For as well as the fourth grade was going in the classroom, it didn’t translate when they closed the schools and moved classes online. My son’s school was not equipped to do online schooling successfully, and they spent the rest of the school year just trying to get through it. There was a lot of homework, a few virtual class sessions, and a lot of busywork. But with the help of our nanny who also went virtual, we figured it out and made it work.

As frustrated as my wife and I was (as were many other parents) with the quality of the “forced virtualization,” my son enjoyed the move to virtual classes. Of course, he missed seeing his friends, and the online sessions didn’t always offer a chance for the kids to interact. But he could take the lessons from the “office” we created in his room. He didn’t have the noise and anxiety that came from going into the physical school surrounded by other students.

While we knew online schools were an option, we didn’t consider them because of my son’s age, and because one of the reasons we sent him to school was for the social aspect. But because of how well he responded to the move to virtual classes during the pandemic, my wife started looking into them as an option for fifth grade.

Initially, I was worried about how they would deliver instruction to an 11-year-old. From what I saw of the virtual classes in his current school, I couldn’t imagine learning anything. But the first thing we picked up on talking to the online school was that it is very different when a school is set up to operate virtually versus a traditional school that is thrown into teaching online.

The online school is also required to accommodate an IEP and might have more flexibility in accommodating my son’s schedule and his need to chunk activities during the day. They have programs in place to help students meet and connect in the real world, too. We’ll have to get creative to continue to develop his social skills, but the in-person meetings will help.

The more we looked into it, the more that it seemed like a good thing to try for fifth grade. Forcing my son to go back to an environment that makes it more difficult for him to learn when there is another option is irresponsible. Besides, we can always go back to the traditional classroom if it doesn’t work out. But, especially with the state of the world and the uncertainty about the fall, all the signs point to trying something different.

If you have any experience with online schooling, I would love to hear about your experiences, good and bad. Feel free to leave a comment or contact me directly.

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.