epilepsy dad

Tag: parenting

  • Fewer Choices, Less Time

    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.

  • Little Boxes All The Same

    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.

  • Meeting Emmet

    Meeting Emmet

    During the first few weeks of January, we traveled to Xenia, Ohio, to meet our son’s service dog, Emmet. It was a meeting more than two years in the making.

    This is the second video documenting that trip where we finally meet our new family member and share some of the training we went through to be able to bring him home. Enjoy!

    If you would like more information on service and service dogs for children, please check out 4 Paws For Ability.

    Please subscribe to our YouTube channel here EpilepsyDad on YouTube!

  • 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.