Category Archives: Health

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.

5 Years Ago Today

5 Years ago today, Angelica might have had mono because the antibiotics weren’t working so it wasn’t strep.

The closest "before" picture I can find is almost a year before, Aug 2009.
The closest “before” picture I can find is almost a year before, Aug 2009.

5 Years ago today, we went to the family doctor to get checked out.

5 Years ago today, Angelica got a routine diagnostic blood test.

5 Years ago today, I dropped Angelica off at home and headed in late to work.

5 Years ago today, I came home from work and helped make dinner… Roast chicken with potatoes and veggies and gravy.

5 Years ago today, the phone rang during dinner. Our family doctor called our home phone from his home phone at 6:30pm.

5 Years ago today, I heard a word that I had heard before, but this time was like hearing it for the first time. For the first time “leukemia” was relevant to my family; to my daughter’s life; to my life.

5 Years ago today, we packed bags, though we had no idea what to pack or what would come.

5 Years ago today, I sat on the side of my bed, in the stillness of my room, holding some clothing in my hand, and I cried. For a few seconds I cried, then I prayed, “Father, I can’t do this. Just tell me how it ends.” Then I heard, “She will be ok, but you have to take this journey with Me.” That was all I needed.

5 Years ago today, I left my 9 month pregnant wife, and took my very sick daughter to BC Children’s Hospital.

5 Years ago today, we signed in to the ER and sat waiting, for what seemed like too long, though they were waiting for us. A young ER student doctor tried to give us hope – false hope – that it might still be mono; it can give a false positive.

5 Years ago today, the Oncologist-on-call was Jacob Rozmus. If there was ever a doctor that was gifted to work with very sick children and their parents, it was Dr. Jacob. Though we passed in the halls a number of times in the years to come, it was the only time he actually worked with us, and one of the only times we talked… that I can remember. He told us to not have false hope. He explained what we were facing. He told us details and answered questions. There was a kindness and a peace in his voice that I can’t explain.

5 Years ago today, an orderly with a wheel chair brought Angelica and me to a wonderful and horrible place; we signed in for the first time to 3B. (few words/numbers/letters/symbols hold as much emotion for me as “3B”)

5 Years ago today, I met parents in a small lounge that gave me advice and encouragement, and even gave me some of their fears. As I write this out today, I remember two children lost, who’s parents I met that night.

June 17, 2010The official beginning would be the next day, when we met the amazing man and doctor that would oversee Angelica’s treatment. But the day of June 16th, 2010 stays permanently etched in my mind; the events, the colors, the details, the words, the emotions, all permanently burned into my mind. It was almost 2 1/2 years later that I got to stop Dr Jacob in the hall and thank him for that night, what a difference he made.

There was a peace in the chaos and fear and pain, “She will be ok, but you have to take this journey with Me.”

I’m not sure why today is so significant to me, but it is. For some reason making it as a family 5 years from that day seems unbelievable. It is unbelievable. In the moment, you can’t see tomorrow… there were years of not seeing tomorrow. Looking back and seeing 5 years brings a lot of things into perspective. I am grateful to all the doctors, and staff, and family, and friends, and strangers who helped, and carried us. I am grateful that today, 5 Years later, Angelica is graduating from high school with amazing grades, a bright future, rock solid faith… and most importantly, she has life.