I compiled this list directly quoting people with narcolepsy and their family members who reported on accommodations received for narcolepsy during education (from grade school to graduate school). I’ve broken the accommodations into categories.
Every student with narcolepsy is different. Every school is different. What works best for your student may be a creative combination of ideas. This list offers a starting point. Please review with your student and give them some time to think about which priority accommodations would best help him/her succeed.
Please note: these accommodations may NOT be “standard” or well-understood by school admins or teachers. You may face resistance. You are not alone. Please see Diana Brooks’ post on advocating for your student.
MANAGING SLEEPINESS – NAPPING:
- Designated area for scheduled nap time.
- Ability to go to the nurse when he needs a nap.
- Now that I’m at college I can walk out of my lesson whenever I need to so I can get fresh air.
- I often get to stay in the classroom at break times so I can sleep.
- A designated cubicle reserved for me in the library basement away from most noise and foot traffic, where I could nap anytime and leave a small travel blanket and extra sweatshirt for comfort.
- I am also allowed to leave the classroom if I feel like I might have a sleep attack or for any other reason.
- A “study hall” period to nap daily.
- Mid-day study hall if you need a nap time.
- If I fell asleep in lessons my teacher would make notes for me or my friends would tell me what I missed.
- If I need help with taking notes in class (because us narcoleptics don’t always catch everything) I can choose to anonymously assign a classmate to take notes and use their notes as well in order to grasp concepts etc.
- He is able to take notes but he only usually has half sentences, so his teachers are asked to provide him with their copies so he can study easier.
- Using a “smart pen” (like LiveScribe) that records as I write.
Day-to-day in classroom:
- Snack in class if his stomach is upset if needed.
- My tutors don’t go mad at me if I’m late (which is a lot) because they know I’ll have overslept.
- All my professors are aware that I have a disability but they don’t know what it is unless I choose to tell them. And if I have any problems with the above mentioned, I just go to the disabilities advocate and she will take care of the issue!
- Accommodations extends to extra-curricular activities which has helped my daughter participate in Volleyball and Cross Country running.
- Opportunities to revise material at a time that suits child better.
MISSING CLASS TIME:
- I’m allowed (if needed) to have 4 excused days if I’m just too tired to make it to class.
- Coming in late if she needs sleep.
- Absences were excused.
- If the diagnosis is new & the right meds haven’t been worked out, attendance is an issue. One doctor’s note for the semester or year. If your child can’t wake up or is having multiple cataplexy attacks, they don’t make it to school. But they won’t be running to the doctor’s office to get a note.
- For younger kids, flexibility with homework. Sometimes they can barely make it through the day, let alone homework.
- Extra time to make up homework.
- More time for homework.
- Rearranged his 4 block classes a day so his 2 boring ones are when he first takes his meds.
- My daughter’s High School has a block schedule, and she was able to come in second period.
- Priority scheduling – first period study hall for kids who can’t wake up, or mid-day study hall if you need a nap time. The most difficult classes at your most alert time of day.
Alternatives to traditional classroom:
- Virtual school. My daughter will graduate this year from Connections Academy.
- They also let her take online classes to make up credits so she could graduate. My daughter missed more school than she attended but still graduated from high school. Without these accommodations it would have been a nightmare.
- Summer classes/ Summer online classes.
TESTING & Final Papers:
- Extra time on tests, breaks during tests every 45 minutes or so as needed, mark in book only-no answer sheet to bubble, separate room if needed.
- Scheduling for tests- she couldn’t always sustain the alertness needed to do well on two or three finals in a row.
- Air conditioning (often done for kids with CF & other issues, so it can be done).
- Tests & quizzes first thing in the morning.
- During exams, I was allowed a break every half an hour (or earlier if I got too tired). so I could get fresh air, my seat was next to a window (if possible) so I could get natural light and I got extra time.
- If I am having narcolepsy flair ups, I can email a professor to change a test date and also I am allowed extra time on tests.
- Standing while taking tests is a big one for me!
- At most only 3 hours of testing a day.
- Time and a half on tests.
- Time and a half on tests, separate room to take test so I could nap, stand or walk around.
- Extensions for all final papers.
- I’ve been given extra time on all of my deadlines.
- For ACT, get accommodations for one test per day instead of all of them back to back.
- Extra time to take tests (ACT is hard to get accommodations for).
Tips from experience:
“As soon as the child is diagnosed, be proactive and learn what your rights are. We struggled for an entire semester before a friend of mine told me about getting the official forms/request in place.”
“I had a teacher who was amazing. She would let me nap in class but would always wake me up when we were doing new material. I would also always go to ‘Math Club’ (an after school study group) and she would revise that day’s class material with me.”
“LOTS of communication with teachers and administration.“