epilepsy dad

Tag: special needs

  • The War on DEI Is a War on My Son’s Future

    The War on DEI Is a War on My Son’s Future

    Like many parents of children with epilepsy and neurodivergent diagnoses, my wife and I have spent years advocating for accommodations that help our son navigate a world that isn’t built for him.

    At times, it felt as if it was us against the world. We would have to document, explain, and justify every request to provide our son an opportunity to thrive, not merely survive. While our journey has primarily been uphill, we have endured because our son deserves the same opportunities as everyone else.

    It was encouraging to see Diversity, Equity, and Inclusion (DEI) initiatives take a more critical role in our society in the last few years. These initiatives create environments where all individuals—regardless of race, gender, disability, or background—have equal opportunities to reach their full potential.

    Many DEI initiatives specifically address disability-related barriers, such as:

    • Ensuring accessible workplaces and schools
      • Promoting inclusive hiring practices
    • Providing reasonable accommodations (e.g., flexible work arrangements, assistive technology)
    • Educating organizations on disability awareness and reducing stigma

    It made me feel like our uphill journey might level off and that these programs might help relieve some of our struggles and fears about our son’s future.

    But then, Trump and MAGA happened.

    In the first few weeks after the new administration took over, it has ordered the rollback of DEI policies meant to open doors that were unfairly closed, falsely equating diversity efforts with discrimination. The ACLU wrote, “In his first few days, President Donald Trump is undertaking a deliberate effort to obfuscate and weaponize civil rights laws that address discrimination and ensure everyone has a fair chance to compete, whether it’s for a job, a promotion, or an education.”

    Without facts, they have blamed DEI initiatives for the devastating fires in California and, most recently, for the tragic crash between a military helicopter and a passenger jet in Washington, D.C. In a press briefing, they specifically called out part of the FAA’s DEI plan that included hiring people with disabilities, including neurodivergence and epilepsy.

    Let’s be clear: Accommodating neurodivergent people did not cause a plane crash, just as supporting people of color or the LGBTQ community did not start a wildfire.

    But the messaging, pandering to the MAGA base, aims to create an environment where rolling back protections and opportunities for communities who have been discriminated against, marginalized, and disenfranchised for so long becomes acceptable, even necessary.

    The Trump administration’s latest rollback of DEI initiatives isn’t just another political move—it’s a direct assault on people like my son. And it’s not limited to government institutions. By removing federal funding for DEI initiatives and rolling back the requirement for companies doing business with the government to have standards that address and prevent bias, the administration is bullying corporations to abandon or alter their DEI programs.

    DEI initiatives aren’t some abstract concept, and these aren’t abstract policy changes. This administration’s actions aren’t just about politics. They’re about real people—our children, families, and futures. They’re about my son’s future. I’ve fought too hard for his right to an education, to be safe at work one day, and to live in a society that values him as a complete person.

    For families like mine, these programs are lifelines, offering hope and opportunity in a world that often feels stacked against us. Rolling back these protections isn’t just a policy change; it’s a betrayal of the progress we’ve fought so hard to achieve. My son and countless others like him deserve a future where they are valued, included, and given the chance to thrive. We cannot let these initiatives be dismantled without a fight. As parents, advocates, and allies, we must stand together, raise our voices, and demand a society that embraces diversity, equity, and inclusion.

    The stakes are too high to stay silent.

  • 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.

  • 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.

  • Giving Back And Getting Back

    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.

  • Advocating For My Special Needs Child

    Advocating For My Special Needs Child

    By the time my son started kindergarten, we had gotten him off another toxic medicine and he started to settle in to the ketogenic diet and a new medication. His behavior began to level off and his seizures happened mostly at night. He still needed assistance during the day, special needs coming from a combination of seizures, behavior, and attention, but the district found him a one-on-one aide that could start the first day of school. Everything seemed to come together just at the right time.

    His one-on-one was not specifically trained. I’m not sure she knew what the details of the job were before the first day, so we basically told her that she should keep our son safe, watch for seizures, and help keep him on task if he has a hard time focusing or demonstrating a lack of impulse control. After a week or two, we started to receive feedback from the teacher that the aide wasn’t going out to recess with him, a time where having a seizure would leave him most vulnerable. We also learned that she was making him sit by himself during lunch on those days where his stomach was having a hard time with the fat in his diet and he didn’t bring food, leaving him to sit at the end of the table away from his friends.

    Instead of bringing it up to the district, we wrote a list of “expectations” with my son’s teacher and gave them to the one-one-one. She did better for a time, but it was clear that working with children was not her thing and that she was just showing up for the paycheck. There was no warmth, no compassion, and no attempt to get to know our son, but we let it go because at least she was doing something, and our son was doing so much better.

    His teacher and the class aide also did what they could, but in a class of 29 children, my son could only receive so much special attention. But again, he seemed to be doing so much better, so we thought, between the teacher, aide, and the extra body that was his one-one-one, that our son was getting enough support because he was in school, making friends, and learning. Things were on cruise control, and we let a lot of things slide.

    Last week, though, our son got sick. We already learned early on that epilepsy and sickness don’t play nice together. It was actually the flu that brought us to the emergency room the first time things got bad with my son’s seizures, and where we saw first-hand the increase in seizures that come along with the sneezing, coughing, and runny nose. This time, though, we had a good base of medication and diet, so we weren’t seeing a big increase in seizures, but we were seeing more attention, focus, and impulse control issues.

    This happened to be the same week where my son’s one-on-one took a different job. I was told by my six-year-old that his helper’s last day was the previous Friday. No one told us (or his teacher) the the aide had left, so my son was left to find his way in a classroom during a week where he most needed the help.

    The episode was our wake up call. The nurses and social workers told us before we started school that, especially with public schools that are desperate for funding, we would need to be our son’s most vocal advocates. But we got comfortable because things were going better than we could have imagined a few months ago. We let ourselves drift in to a state of dangerous complacency because of how well our son was doing and we stopped pushing for what our son needed.

    I haven’t been doing it that long, so I’m still learning what it means to be the parent to a child that has special needs. It’s hard enough to watch my son struggle with his epilepsy and related side effects. It’s exhausting to think about the level of effort that will be necessary to stay vigilant and ensure he is getting even the most basic services, nevermind what he needs to succeed. But like the many other parents that struggle every day to navigate the complicated, messy, and difficult world surrounding a special needs child, I’ll be loud and fight for what my son needs. Because if I don’t, no one else will.