seizures Archives - Page 19 of 22

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.

The Day My Son Stopped Skating

Before my son was born, we already had his name picked out. The name came from a hockey player on a team that I liked…not my favorite player, mind you, but rather a player who’s last name sounded like it would be a cool first name for a future hockey star. And so he was named, and so began his inevitable indoctrination in to the world of hockey.

On my son’s second night of life, he and I laid on the couch in hospital room watching the Colorado Avalanche on television. Well, I was watching. He was sleeping and absorbing the game through osmosis.

When he was two, even before he had his first haircut, he got his first hockey stick. He was just learning to run, but we were already playing floor hockey almost every night after I got home from work. The more exposed to the game he got, the more aspects of it we incorporated in to our play, from national anthems, to player introductions, to raising the Stanley Cup after the last game of the night.

When he was three, he broke his foot jumping off a chair. The break required a cast (or four casts, since as new parents, we hadn’t quite figured out how to keep his cast dry between the bath and the snow on the ground). But that didn’t stop him from playing hockey, shuffling around and taking slapshots from his knees.

Once his foot healed, we bought him his first pair of hockey skates. We went to a hockey store where he was surrounded by every pad, stick, and puck he had imagined himself playing with while watching the games on television. He sat on the bench getting sized for his stakes, ready to take the ice.

When he finally hit the ice, I half-expected him to skate circles around me. He didn’t, of course, and he spent most of is time on the ice (either from falling or intentionally sliding on his belly), but there were moments pushing around the skating aid where I could see his gears turning, imaging himself crossing the blue line for a breakaway goal.

From there, we took a parent-tot skating class before he joined the “learn to skate” program. During every class, he would look down the ice at the older kids in the hockey class, and he would ask how much longer before he could join them. It motivated him to get better and, a few months before his fifth birthday, he was finally registered for the “introduction to hockey” class.

The first day of class, he filled the locker room with electricity as he was finally able to put on all his hockey pads and jersey. He lined up with the rest of the class, ready to take the ice. The door opened, and the miniature hockey team took to the ice. When it was my son’s turn, he put one foot on the ice, then the other, and then fell straight down. Of course, wanting to record this moment, I have this inauspicious start on video, and I had planned on showing his teammates someday when he was playing in the National Hockey League.

But then, shortly after his classes started, he had his first seizure. By the end of the year, his seizures had gotten out of control, and his fatigue and the side effects of the medicine made skating a dangerous impossibility. He lost control of his body that he was once able to control so completely. He was ripped away from the sport and the activity that he continued to talk about and watch on television every day.

We no longer thought about skating or the NHL, we just hoped that the seizures would stop, and that the damage done from the seizures and the toxicity and side effects from the medicines wasn’t permanent. There were days when my son was too tired to function and too wobbly to stand but he would try to go in the basement and take shots. It broke my heart to see him like that, but I would go down and play with him, sometimes fighting back tears on the really bad days.

There were days when I thought that was where our story would end. But thanks to the amazing people who cared for him, my son’s condition started to improve. Although we are not seizure free, they happen mostly at night. As we continue on the ketogenic diet and adjust his medications, my son has regained much of his balance. We started working with an off-ice coach so that he can be more active and build his stamina doing something that he loves. Then, a few weeks ago, a day we had almost stopped hoping for came.

We hopped in to a taxi and headed to our local ice rink. My son put on his helmet, his jersey, and we helped him put on his skates. He stood and started walking down the hallway towards the ice. The next few steps felt like they came in slow motion. I held my breath as he grabbed the side of the boards with his right hand and stepped on to the ice with one foot and then the other. After a few seconds, he was free of the boards, the edges of his skates digging in to the ice and propelling him forward.

Even though we only spent a short amount of time on the ice, it was enough for mark a milestone in our journey with epilepsy. We don’t know what the future holds, how long the diet or the medicine will work to control his seizures. We don’t know if he’ll be able to continue to skate if his seizures spike again or if he develops new side effects or complications as he ages. But for as dark as things have been, as much as my son has gone through, and as impossible as everything had seemed, for one afternoon, he was able to do what he loved, and we celebrated that moment as if he had just won the Stanley Cup.

Learning To Be Brave From My 5-Year-Old With Epilepsy

A few weeks ago, before school started, my son was invited to a play date with other kids that were going to his new school. It was a good opportunity for us to meet the parents and for our son to meet his future classmates, and he was excited, even though he was having more seizures in the days prior. The day of the play date, he took a nap, woke up, and had another big seizure as he was getting dressed. With eyes full of tears, he said that he didn’t want to go anymore. I sat down on the floor next to him, held him and rubbed his back, and I asked him why. “Was it because of the seizure?” Initially, he said yes, but then he said that it was because he was nervous.

I let him know that it was okay to feel nervous, and that everyone gets nervous. I told him we didn’t have to go, or we could go and leave if the playground became too overwhelming. He cried for another minute, then he took a deep breath, put on a very stern face, and said out loud “I can do it.” He stood up and finished getting dressed. I checked in with him a few more times as we packed up his stroller, giving him probably too many opportunities to change his mind, but he was committed and we headed down the street to the park.

When we got to the park, he stayed by my wife and I initially, but he introduced himself to the other children. Eventually, one of them led him over to a tree that they were climbing, and my son eagerly joined in. He would climb the tree, maneuver to a branch, and drop down, Ninja Warrior-style.

On one of his climbs, he had a seizure. I saw his body stiffen and heard the tell-tale sound that accompanies his seizures, so I grabbed him and gently lowered him to the ground.

Once the seizure stopped, my mind started to race. Did the other kids see? Would they cast him aside? He wet his pants during the seizure. Did the other kids see that? Would they make fun of him? I questioned whether we should have brought him to the park at all and why I convinced him to put himself out in front of these new people when I knew he was already having a bad seizure week.

As he started to regain his composure, I asked my son if he was alright, and if he wanted to go home. “No,” he said. “I want to stay.” After a few more minutes, he stood back up. We dusted him off and did an inspection. His pants weren’t that wet and, aside from being a little hazy, we couldn’t see anything wrong. I asked what he wanted to do, thinking that running away and going home was the best option. “Climb the tree,” he said, as he walked back over to the tree. He grabbed a think branch with both hands, put his foot on the trunk, and pulled himself up.

I was never very brave, and I struggle to not project my fear on my son. I want so desperately to not poison his bravery with my overbearing desire to protect him from the world. I was different as a kid. I was awkward, and uncomfortable, and afraid. I know what it is like to be picked on for being different. The world can be a cruel place when you are different.

My son has epilepsy. He has seizures. That makes him different, too. There will be times where those differences are on full display, in front of his friends and his peers. I don’t want him to feel shame for who he is or because he has epilepsy, so my natural tendency is to hide. But he is teaching me that the right answer isn’t for me to encourage him to run away when he has a seizure or when he falls down. It’s my job as his dad to encourage him to put himself out there, even on those days when it’s hard. It’s my job to encourage him to get back in to that tree and climb.