Epilepsy Dad

Not Having To (Always) Say You’re Sorry

I grew up thinking that everything had to be perfect. Between the nuns at my Catholic school and my parents at home, I walked a very thin rope of perfection, calculating each step so as not to fall and raise the ire of either side. I wasn’t perfect, of course, and I probably spent just as much time suffering the consequences as I did running from them. Today, the legacy of that rigid black-and-white right-and-wrong upbringing causes me to be extremely hard on myself.

A few weeks ago, we were putting ornaments on the Christmas tree. My son was enthusiastically picking up ornaments from the pile we made for him and rushing to place them on the tree. Inevitably, one of the fragile glass bulbs slipped from his tiny hands as he rushed to stand and it crashed and broke on the floor. “I’m sorry”, he said. I told him that he should be more careful and slow down, and he apologized again.

Lately, I feel like I’m always on my son and that he spends most of his time with me apologizing. It’s a terrible feeling for me, and I can only imagine what it feels like for him. What makes it worse is that there are many times when he can’t control his body. When he’s tired, there is a disconnect between his brain and his body that exacerbates the gap that is already present in an average six-year-old.

I have gotten so used to dealing with him when the side effects of the medicine and seizures took away his ability to reason and control his body and I needed to catch everything before it escalated. Now, I can’t step back and let him explore and make mistakes.

He must feel helpless to avoid my disapproving gaze and constantly feel like he’s disappointing me. “I’m not mad, honey, I’m just disappointed” is classically the worst sentence in the history of parenting, and I feel as if I’m delivering it with every dissatisfied glance.

I’m not suggesting that there shouldn’t be any rules or consequences. Now that we’re back among the general population, I see other kids going without boundaries as their parents ignore them, and that’s the other extreme. It’s my job to teach him right and wrong, acceptable and unacceptable. But my response needs to be in proportion to the behavior, and I’m having a hard time letting go of those feelings I had when things were at their worst.

One of our therapists offered a piece of advice that I am trying to put in to practice. She said that if he’s not doing something unsafe, and if what he is doing is not the end of the world, then take a deep breath and ignore it. Especially when an innocent action now feels like one that he did when his behavior was out of control, it makes sense that my alarms would be firing. But that doesn’t mean that every action needs a response. If he is being unsafe, or if he is breaking a house rule (no hitting, for example), then address it. But if he’s flopping on the ground, or his laughs turn in to a scream, then I should take that breath.

I don’t want my son spending his childhood always having to say he’s sorry. What he is going through is hard enough, and I don’t want to contribute to squelching the bright, special light that is inside his heart by making him feel like he needs to be perfect. It’s my job to help guide him along the way to stay on the right path, but it’s also my responsibility to help him be happy and free.

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.

Giving Thanks And Giving Back

Each December, we make a special end-of-year donation to a charity. This year, we are giving thanks and donating to the organizations that helped my son and our family through our first year with epilepsy.

We are very fortunate. Even though my son’s epilepsy is complicated, we have insurance, and I have a good job working with compassionate people who allow me to balance work with taking care of my son and my family. We’ve met a lot of other families that were less fortunate, and the groups that we are donating to this year provide help to everyone. That support and the research necessary to better understand epilepsy costs money, and that is why we are donating.

If you are looking for a place to put a donation at the end of the year, each of these groups has had a direct, positive impact on my family, and I would appreciate any support you could give them.

Children’s Hospital of Philadelphia

We spent more than two months on the Neurology floor in the Children’s Hospital of Philadelphia (CHOP). Many of those days, we were at the bedside of our son praying that the seizures would stop. Thankfully, we were able to eventually go home thanks to the many, many people at CHOP that took part in my son’s care. The doctors, therapists, Child Life Services, custodial staff, EEG and phlebotomy techs, volunteers, and especially the amazing nurses on the neurology floor, collectively took care of our son and our family, and we are unspeakably grateful.

You can donate to the Children’s Hospital of Philadelphia on their Donation page.

Children’s Hospital of Philadelphia Ketogenic Kitchen

Our son has refractory epilepsy, which means that he doesn’t respond well to medicine. To help with his seizures, we were put on the ketogenic diet. At CHOP, on-boarding to the keto diet is a week-long inpatient process where the children are monitored while adjusting to the diet and where the families are trained on how to be successful with the diet, including classes in the Keto Kitchen on measuring and cooking keto meals. The Keto Team also hosts keto cooking classes, and fund a culinary intern to explore more creative, tasty meals for the keto kids.

You can donate to the CHOP Keto Kitchen on their Donation page.

Epilepsy Foundation of Eastern Pennsylvania

When my son was diagnosed with epilepsy, we spent the first few months in the hospital surrounded by an amazing support network. When we left the hospital, though, we felt very alone. We didn’t know who to talk to or where to find more information about our new world. We didn’t know what resources we would need or what was available. We didn’t know how to talk to the people around us about epilepsy. Fortunately, the resources available through the Epilepsy Foundation and the Epilepsy Foundation of Eastern Pennsylvania (EFEPA) helped. We walked in their Summer Stroll and learned more about other programs they had for the epilepsy community. They also came in to my son’s school and talked to his teachers and classmates about epilepsy. When the world seemed big, and scary, and dark, EFEPA provided a bit of light.

You can donate to the Epilepsy Foundation of Eastern Pennsylvania on their Donation page.