epilepsy dad

Category: epilepsy

  • Let Him Fail

    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.

  • Strapped

    Strapped

    Tapped.
    Trapped.
    Strapped.

    We toured another school the other day. Between the brick-and-mortar school that failed to accommodate my son and the virtual school that seems to be trying but may not be able to accommodate him, it’s becoming more apparent that the Industrial Era education complex is not for children like my son.

    The school we toured is about an hour away. That’s a long drive to contemplate making twice a day, five times a week. We’re already strapped for time with counseling and therapies and appointments and jobs and life. But if this school can accommodate our son in a way that helps him learn, grow, and feel successful, then we will figure it out.

    The school is a private school. It costs as much as a house payment every month to attend. Although I am extremely grateful for my job and the salary and benefits it brings, we are still a one-income family. We have insurance through my job and, in Pennsylvania, secondary insurance for my son, but they don’t cover everything.

    We’re also trying to save up for when we’re gone. We want to do what we can to set up our son for a comfortable life because we don’t know what the future holds. He may be self-sufficient, or he may need help, and we don’t want him to have to struggle.

    And we’re trying to do these things and make these choices while also living our lives. We like to get out of the city. We like to go on vacation and give our son and our family experiences that help make everything not just a chore. These things all cost money, and there is never enough money to do them all comfortably.

    Of course, that’s when we have enough energy to do those things. Energy is another resource that is in tight supply. It takes so much of it to get through the day-to-day, juggling everyday responsibilities in addition to those of having a child with special needs. One reason we liked escaping to Maine last year was that it helped replenish our tanks, but those reserves quickly get depleted when we return to normal life.

    Time. Money. Energy. Every day involves making choices between them to hopefully provide the best life for our son and our family. But it feels like the longer we have to choose between them, the more strapped we get for each.

  • Our Road To A Service Dog

    Our Road To A Service Dog

    My wife and I created this video to share our experience working through the process to get a service dog for our son. If you’re thinking about getting a service dog for your special needs child, we hope you find this information helpful, and please don’t hesitate to reach out if you have any questions!

    Enjoy!

    Links Mentioned In The Video

    4 Paws for Ability https://4pawsforability.org/

    Twitter:

    Dave: @epilepsy_dad
    Kerri: @lostandfoundmom

    Instagram:

    Dave: @epilepsydad
    Kerri: @lostandfoundmoms
    Emmet: @4paws_emmet

    You can also subscribe to our YouTube channel here: EpilepsyDad on YouTube

  • Trapped

    Trapped

    The pandemic has us feeling trapped.

    We’re trapped in isolation. It’s been almost a year now since we’ve been able to hang out in person with our friends. It’s been almost a year since I’ve stepped into the office and looked across a conference table at a colleague. It’s been almost a year since my wife and I have sat down in a restaurant or gone on a proper date.

    We’re trapped in the city. We’ve stayed downtown because we spent so much time in the nearby hospital and because I work a few blocks away, so it saved us time and money. But our small condo feels smaller since our son and family have grown with the addition of a (not-small) seizure dog. We’ve been thinking about finding a place with a little more space. However, the exodus of people leaving the city has home inflated prices in the suburbs. Few people want to move into the city during the pandemic and no one knows how much cities will bounce back if more people are working remotely at the end of this. As a result, we can’t go anywhere.

    We’re trapped in our schools and our jobs and our patterns. We’re trapped by our trauma. We’re trapped by our pasts. We’re trapped by our circumstances. We’re trapped in our lives.

    The sense of being trapped is suffocating. The air is slowly escaping our lives and leaving us struggling for breath.

    We occasionally find a way to break free. We escaped to Maine last year in a desperate attempt to catch our breaths. But, ultimately, we were pulled back into the real world and felt the trap closing tighter.

    As much as I would like to believe that this sensation was caused by the pandemic, the reality is that we were trapped before the world started getting sick. We were already isolating ourselves. We had already let the difficulties we were facing take away our freedom, our connections, and our air. This was our pattern before it became everyone else’s pattern, too.

    The question, then, is when the world opens back up, what will we do? Have we learned anything during this time of forced confinement that will cause us to do anything differently? Will we have more energy to do anything differently? Or will we continue on, doing what we did before and during the pandemic? Will we choose to stay trapped?

    There is a quote that says, “Water, when trapped, makes a new path.”

    I suppose I should try to be more like water.

    But it takes so much physical and emotional energy to do something different. It takes energy to change mindsets. It takes energy to pretend, and to move forward. Trapped water builds pressure and it uses that energy to push through obstacles. Pushing through our obstacles and making a new path takes energy that, most days, we don’t have.

    I guess I just imagined that it would be different. I imagined it would be easier. But it’s not.

    Maybe that’s okay. Maybe that’s part of the journey. Maybe it’s enough that we’re making it through right now. Maybe it’s enough that we’re still here, still living, still trying, and still together. I’m so grateful for that.

  • Tapped

    Tapped

    My son does this thing where the muscles in his face loosen. His cheeks look chubbier as they drape softly down to his jaw. His mouth separates a little, and I can see the tip of his tongue pushing through. Sometimes he’ll swallow slowly, which at the same time seems automatic but also like it takes all of his concentration and energy.

    That is one of the signs we see that lets us know when he is tapped.

    There are other signs, too. He has an even harder time with his executive functioning and memory than he normally does. It’s more difficult for him to regulate his emotions. He gets angry and frustrated. But that look on his face is the look of someone who has given everything they can for the day. It’s how we know he’s done.

    This isn’t something that only happens occasionally.

    It happens every day.

    There are days when it happens sooner, usually around this point of the school year or when we did such things after a baseball game. There are days when it happens later, like on a lazy weekend. And there are days when it happens more than once, usually once before and then later on after a nap. But it always happens. Every day. Every day, my son gives everything to get through the day.

    Every day, my son gets tapped.

    The other day, I sat on the edge of the bed with my son and studied his face as he leaned against his pillow, watching his iPad. I tried to be present with him. I asked him what it felt like and if there was anything I could do for him, but even asking a question forces him to try to muster enough energy to think and respond. He’s such a good kid that, even tapped, he tried to find enough energy to process my question and think of an answer. It felt cruel. I felt terrible. And so I didn’t ask any more questions, and I sat with him and rubbed his head and let him tune out.

    Unless you knew him, you wouldn’t know that anything was going on. He might just look like a tired kid. Its invisible nature is one of the many curses of epilepsy. His doctors, who have seen the same in other patients as they see in my son, understand it. But it’s harder to convey to others because they don’t know him and because they don’t have a reference for that level of exhaustion.

    “Imagine climbing a mountain. Now, imagine if everything you did felt like climbing a mountain. Now, imagine if that is what you felt like every day. “

    Every day, my son climbs that mountain. Every night, he falls asleep only to find himself back at the base of the mountain when he wakes up. Then he starts to climb again. He pushes, he grinds, he stumbles, he gives everything he can until his body, and his brain can’t do anymore.

    Every. Day.

    He’s eleven years old.