10 things educators should know about students with narcolepsy:
- Narcolepsy does not mean that I am lazy, depressed or mentally ill- think of it like dyslexia or ADHD; I am just as intelligent and capable as my peers, but my excessive day-time sleepiness (EDS) makes certain things more difficult.
- EDS and sleep deprivation can make it harder for me to concentrate, especially on subjects I am less interested in, and I may be more forgetful or “scatter-brained”. I have limited control over this, but I am working on strategies to help me stay focused and stay organized.
- If I fall asleep in your class, I am not being disrespectful or dozing off because I stayed up too late. I want to stay awake, but sometimes I physically can’t. When this happens, it is much better if you can give me 5-10 minutes to sleep, then discretely wake me. If you wake me up right away, I will probably fall back asleep immediately, or be so groggy that I can’t understand the lesson.
- Please don’t embarrass me. I don’t like falling asleep or “zoning out” in the middle of class, and I am embarrassed when it happens. Please don’t make it worse by calling extra attention to me, putting me “on the spot” to answer a question, loudly calling my name or telling me to leave the room in front of my classmates. Embarrassment just makes it harder for me to concentrate, and it won’t stop my EDS.
- Sitting me in the front of the class might seem helpful from your perspective, but I may find it stressful to know that if/when I fall asleep or “zone out”, everyone in the class will notice. Please ask me if I have any seating preferences.
- I find it very hard to stay awake when you darken the classroom for a presentation or movie. Accommodations like giving me a copy of your presentation notes, periodically letting me move around or stand, or letting me watch the movie for homework can help me get the most out of these
- Just because my eyes are open and my pencil is moving does not always mean I am really awake. Sometimes I have brief “micro-sleep” episodes where I “zone out” or daydream; my eyes are open and my body keeps automatically doing a habitual task (like note taking), but my brain is really asleep, and most of what I do and/or write will be indecipherable when I wake up.
- Some times of day are better for me than others. Many people both with and without narcolepsy become very sleepy right after lunch, for example. Some people with narcolepsy also experience more day-time sleepiness first thing in the morning, or in the mid-to late afternoon. This can be hard
to predict from day to day since EDS can be affected by things like my mood, day to day activities, and level of interest.
- My fidgeting (pencil tapping, pen clicking, leg swinging, foot tapping, etc.) is not intended to be rude. Some of my distracting behaviors are things I do to help keep myself awake, and I may not realize that I am doing it.
- I find it hardest to stay awake during lecture-style classes. Participating in a discussion based class or listening to several different people speak can help me stay awake.
Learn More: www.narcolepsynetwork.org; Text and graphics © 2013 Melissa Patterson and Narcolepsy Network