Tag: school

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.

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.