My son had a seizure

When I was 11 or 12 years old, I went to stay at a family friends house and they had a daughter about my age. We woke up early in the morning and started playing a board game. About halfway through the game I was winning and the girl knocked all the pieces off the board, and I considered that very unsportsmanlike. But she kept wiping the board off and she was lying on her side and her eyes were rolled back in her head, and for the first time in my life, I was watching an epileptic seizure. It was slightly terrifying, but her father came and supported her head and spoke soothing words and rubbed her body in a calming way, and soon enough she was back. She was tired after the episode, and laid down for a while, and the rest of the visit was quite normal.

Yesterday, we were going out to celebrate an important milestone for one of my daughters by having ice cream for dinner. This is by far the most favorite meal for my son, Josiah. If he can get his hands on a bucket of ice cream, he will consume all of it in one sitting, which is sometimes handy because he doesn’t consume enough calories most of the time.

The night before last, we stayed in a hotel and Josiah had trouble settling and only got about 4 hours of sleep. He also got a pair of hand-me-down roller blades yesterday and he was excited about those. At the point that we were trying to go get ice cream with my daughter, he started to head out and roller blade. This collision of thoughts and desires coupled with a lack of sleep was enough to knock him in to an autistic meltdown.

Above is a picture of him sitting on the sidewalk, stuck. I got out of the van with the other family members and sent them on their way, and I just sat with him there on the sidewalk. He desperately wanted to roller blade. He desperately wanted to go get ice cream. In that moment he was unable to switch the mental gears and was stuck. What came out of his mouth, was yelling, “I don’t want to get in the van; it’s boring! There’s nothing to do in there!”. Yelling that over and over and over at me, his father, on the sidewalk.

Josiah has been having trouble at school. The comments we get back are about how he is being defiant, and stubborn, and on one hand I cannot fathom how someone could view this precious, loving, wanting to please, little autistic boy as defiant or “non-compliant”. On the other hand, I totally get what it “looks like”. As his parents, we struggle so hard trying to figure out how to advocate and educate about what is going on.

After sitting there for quite some time, he began to be able to say a few things that were really bugging him about it all, and even then, it was barely related to the actual problem. He was finally able to start to think about it all, and then he broke down in tears… “Dad… I’m really sorry I made everyone sad… I don’t know why I get stuck.” That’s where my heart breaks. In the core of his heart, he cares about others and he knows that his episode messed up the family plan. And HE KNOWS!!! HE KNOWS THAT HE’S STUCK!!! But in the moment, he… just… can’t… break… free!!!

I went to bed with that on my mind and I woke up this morning with the image of that board game 30 years ago, and the scene of that epileptic seizure. It hit me, that what I want for Josiah is for the people around him to understand that his mental lock-downs are very similar to a seizure, and that the needed intervention should be similar as well.

His mind is a race car that runs full throttle, but he’s only got racing slick tires on. No matter what is going on in a class, he’s always farther down the road than you think… but he’s really bad on the corners. If he isn’t prepared for a corner coming up, he’s going to slide off the road. You can keep him on the road with giving him a map of the track, so he knows when the corners are coming up, but if that gets missed and he slides off the road there are a few things from the epileptic analogy that will help.

  1. It’s not an inconvenience. It’s a medical problem that requires intervention and if you have to call someone to the classroom to come help, then do that, because leaving an epileptic seizing on the floor would not be acceptable, and neither is leaving my son in that place for any length of time.
  2. It’s not a choice. No matter what is coming out of his mouth, if the responses to your words are not cohesive and reasoned, then he is stuck and he can’t help it. You would never discipline a child for having a seizure, and you should never discipline or tell my son that he is a disappointment because his outward expression went off script.
  3. Something set him off and only peace can bring him back. For epileptics, it could be flashing lights or unexpected noises or too much stimulation, but something sets off the seizure. More flashing lights, and more abrasive noise is not going to help then calm and settle. For my son, something, maybe something that’s hard to discern, but something unexpected happened or is about to happen and he feels out of control and his brain has hit a panic button and set him off. No amount of threatening, or scolding, or explaining, or even physically trying to move him, or acting frustrated is going to bring him back. Only, when you can sit with him and tell him that it’s going to be ok, and calmly touch his arm, and tell him that you know it’s hard, will he be able to feel peace around him and start to open up.
  4. It’s a heavy weight to carry. When all is said and done, and things settle down, he knows what happened. He knows that his meltdown affected those around him. He feels bad about it, and he desperately wants to find a way to stop it happening, but he can’t. When my friend at 11 years old came to, she apologized. I felt bad for her and I felt a little bit awkward like I had seen something that was deeply intimate and difficult, but I certainly didn’t blame her; I felt bad for her. If a teacher or SEA is working with my son, he should not end up feeling shame… under any circumstances.
  5. He wants to participate. He’s terrified that something that set him off before will set him off again. He’s scared that people who unexpectedly got mad at him before will get mad at him again. If an epileptic was sensitive to unexpected noises and there was an experiment in class that might make a “bang”, it might help to pull them aside and tell them that what’s coming so they could be prepared. In the same way, if people come around him and make him feel safe, and he gets some information about what turns are coming up and he feels in control of his environment, he really wants to paint and make music and share with his peers.

It’s tough advocating for a child with a hidden disability. It’s heartbreaking. I cling to the hope that some way of explaining things will make a difference. Hopefully this helps… If not, I will keep trying, because my son will understand one thing… He’s worth it.

4 thoughts on “My son had a seizure”

  1. Oh my gosh, I wish I could have given this to every single teacher and SEA that ever worked with either of my sons. So perfectly put. You are an amazing advocate for your son.

  2. Thank you for writing this, Mr. Culley. I had a massive head injury when I was 17, as a passenger in a car accident, and I woke up unable to communicate or walk properly for a long time. My motor skills were debilitated, I could t it express myself at all and people treated me very differently. Even when I learned to speak again, I couldn’t be in crowds of three or more or I would run crying from it because the noise was confusing to me and scared me. My mind would race and I would hyperventilate from the anxiety. I was stuck in my head for longer than I care to remember, all the while being able to think just fine. I knew the hell I was in, I knew what I wanted to say or do, but I could not do it. I would have manic reactions to simplest of struggles, like opening a can of soup with an opener that wouldn’t co-operate. I would cry for hours because of this inability, that really wasn’t a big deal at all with the help I was receiving from friends and family. But i would melt down completely. I would listen to metal music to calm me, because it expressed the frustrations that I couldn’t, without ridicule and criticism from onlookers. I was the pretty much the same person inside, although forever altered by the accompanying pain and depression that often accompanies a head injury, which I will continue to cope with for the rest of my days. It took 8 years of therapy and doctors and operations and patience to again become the person that I once was. And yet I was changed forever. Because I learned what it was like for someone with such challenges to have to cope and struggle with perceived notions about different behaviour than people were used to seeing or hearing. I learned how frustrating it is to be different and want to be able to integrate, and to feel so bad when you can’t. Those days are mostly a distant memory now but I have a special place in my heart for people who live with autism and head injuries and behavioural differences of any kind. I love the way you illustrate so well and lovingly and simply, your sons experience. I wish him and your beautiful family every happiness in life and for the general public to understand better. Because when we know better, we do better. xx

    (I hope I’m not out of bounds in comparing my experience with your son’s. I only mean to illustrate my compassion for him.)

  3. Seizures horrify. And so, for decades, epilepsy advocacy focused on mitigating the stigma—which is fine for most people with epilepsy, the ones like my son for whom pills work. But it’s disastrous for people with intractable epilepsy. Epilepsy research gets less funding per patient than Alzheimer’s, Parkinson’s, or autism. Isn’t it time we worked harder to increase it?

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