Explaining Narcolepsy to Children
Last updated: December 2022
I have been thankful for finding the thing that I might be doing for the rest of my life, and that’s working with children. Right before the pandemic, I was hired as a paraprofessional, or someone who acts as an aide and support for students with specific behavioral and academic needs. This job was so rewarding and a huge step up from working at a local grocery store chain here in the Midwest.
Fast-forward to now: I am still a paraprofessional. However, I live in a completely different city. Wonderful things are happening around me. I am in a different school that has its own culture. I've faced new challenges when it comes to my narcolepsy. New people around me help so much with my journey.
Experiencing narcolepsy symptoms around my students
There is one specific moment I can remember experiencing my symptoms around my students. I am going to share this story, recounting what I remember happening.
Before I start going into detail I need to describe what is like in the classroom and what supporting my students looks like. The special education teacher I work with, Mr. B., has certain times throughout the day when he works with certain students on specific goals. On this particular evening, he was helping a group of 4th and 5th graders with their afternoon math. The lights were off in the classroom, and he stood in front of the Smartboard. There were several kids with their math packets, eyes glued to him.
I remember feeling extremely hot. It started to feel like the room was a sauna, and that made me super uncomfortable. I remember grabbing a small white dry-erase board from a nearby cabinet and starting to fan myself with it.
A student had questions about my tiredness
At one point, a student recognized my symptoms. We'll call him Kevin.
My eyes popped open, and there he was: the student that I'd been working with the whole day, inches away from my face, eyes wide.
"Mr. Tre, are you tired?" Kevin asked, concern on his face.
"Mm-hmm. Yes," I mumbled.
Next thing I knew, my eyes popped open again. There Kevin was, smack-dab in front of me. I don't think Kevin ever left or went back to his spot.
"Mr. Tre, You need to get more sleep!"
I ushered Kevin back to his spot. He was supposed to be reading a book, I realized; yeah, that was it. I walked over to the mini library in the corner, pulled out a book, and gave it to Kevin before I sat down.
How would I describe narcolepsy to a child?
Kevin wasn't reading the book.
"Why are you tired?" he asked me.
You'd be surprised how often I get that. What do I say? "Hey, Kev. Look, I'm missing this chemical in my brain that regulates my sleep cycles"? He would look at me with a furrowed brow, and I'd want to get mad at him for being confused. It's probably not what Kevin expected when he asked why I was tired.
"I got a sleep disorder," I feel like saying. "Cut me some slack."
Sometimes I feel like that's too much. How do I explain to him and the rest of his peers what's going on with me?
I still have more to learn
"I don't get good sleep," I told him. Kevin looked at me, confused. "When I go to sleep, my brain is awake and I start to dream very quickly." This is the time when they normally nod their heads, and I just keep talking. "Because I'm dreaming, my brain never fully takes a break."
Being at my job teaches me so much. As you can see from my reenactment of this scenario, I still have a lot to learn.
What do you think about how I handled this interaction with my student? Is there anything I could have done better?
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