School Accommodations for Narcolepsy

by julie on March 30, 2014

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.
NOTE-TAKING:
  • 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.
HOMEWORK:
  • 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.
CLASS SCHEDULE:
  • 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.“

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{ 20 comments… read them below or add one }

Erica March 30, 2014 at 2:21 pm

I would love to see an article on “Workplace Accommodations for Narcolepsy” and when and how to discuss it with your employer and co-workers.

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julie March 30, 2014 at 4:09 pm

Id love to feature that topic too. If you know of someone who can contribute a guest post on that topic, let me know. Thanks!

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Stephanie April 18, 2014 at 6:34 pm

I agree; that would be extremely useful information. As a teacher, you would think most of these accommodations would be applicable, but administrators aren’t nearly as understanding when teachers need accommodations (heck, they usually aren’t even that understanding when my students need accommodations).

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Elizabeth Dahmer January 10, 2017 at 10:54 pm

That’s where I’m at right now, I’m studying to be a music educator and was failed in a course due to attendance not my competency,but I completed all the course work with A’s; I just had difficulty getting to class on time. Despite my disability memo, she failed me on the basis that it is an unprofessional trait and wouldn’t be excused in the professional world as a teacher. I tried to appeal the grade but both the teacher and the music dept chair agree, I don’t know whether to keep on to the next step or not.

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erica March 30, 2014 at 5:26 pm

this is great! so encouraging as i start to look at grad school options (with work)! thank you!!

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julie March 30, 2014 at 5:57 pm

Thank you, Erica. Good for you for starting to look at grad school options with work. Wow! Keep up the great work. :-)

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Branden April 2, 2014 at 3:49 am

It’s so cool to see schools being accommodating! It’s so easy for us to feel like a burden or “weak” if we can’t do something like everyone else…or maybe that’s just me =)

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Catie Mong April 2, 2014 at 8:10 am

Hi Julie! I’m a Stanford student recently diagnosed with narcolepsy and have been having problems with the disability office (which is ironic considering that’s where Dr. Mignot does all his research). They have a learning center that offers free tutoring and memory coaching for people with ADD and other learning disabilities. However, I am being denied access to these services because narcolepsy isn’t on their list of learning disabilities, and is only considered a medical condition. Given your legal background, I was wondering if you knew whether they were allowed to do this under the ADA since they have an established program that they are denying me access to. Thanks!

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Stephanie April 18, 2014 at 6:37 pm

Do you have to have disability paperwork in order to receive accommodations, or can you receive accommodations just based on your diagnosis?

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makaylah May 31, 2014 at 12:35 pm

im 17 as of yesterday,was diagnosed last september and schooling was HARD! (jan.-may) second semester wasnt any better either , im currently behind in school due to failing 3 out of 4 classes my jounior year so im going into my senior year this fall ,3 classes behind, i dont know what to do so i can graduate on time next may,any suggestions?

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makaylah May 31, 2014 at 12:38 pm

sorry, posted without relating it to the subject , my bad lol, was commenting because i have to start thinking about getting a job f i wanna go too collage and have $ next year and be able to move out and so on, and dont really know how to go about approaching that subject and pointers would be GREAT!!!!

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Momofonegreatkid August 29, 2014 at 2:57 am

Hi – new here. 11 year old daughter diagnosed with idiopathic hypersomonia – two polsonography tests – 95% normal sleep at night – delayed REM – slept in all 5 MSLT naps. She has an IEP for ADD “inattentive”. I don’t know how this will play out with my school District they fought us tooth & nail – 4 years and countless thousands of dollars to get her an IEP. I would like to move her to a school that accommodates children with “learning disabilities”. She also has sensory processing disorder; she is highly verbal; she can’t do math (grade 7 and can’t do grade 3 math). Common Core no less. Do I have a chance of getting her moved to an “approved NY State Private School” for children with learning disabilites? She can’t “nap” at school – she is already relentlessly teased. I worry about her future and her self esteem. We are literally broke finding out what ails her and can barely make the mortgage payments so I do not have the funds for another lawyer. I do have a great parent advocate. I’m in NY State.

Grateful for any and all feedback from parents out there.
With kind regards,
MomofoneVerySpecialGirl!

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Momofonegreatkid August 29, 2014 at 3:02 am

PS: She currently has “OHI” Otherwise Health Impaired; Math Learning Disabilty; Non-verbal learning disorder on the neuropsychological testing which we privately paid for prior to the IH diagnosis. She had a 504 plan for 1 year which a lawyer helped us secure & it wasn’t until we brought in the “big guns”, ie NY City clinical psychologist that we were finally able to secure an IEP. 4 years I went up against those Gatekeepers; Special Ed department; kept my cool; I have documented all of it and in their own tests they state “child keeps putting head on the desk and/or outstretched arm” . We just returned from another “top gun” university and the pediatric neurologist (who almost sent us home stating “it’s ADD Inattentive” – I said “well we travelled 5 hours to rule in/out idiopathic hypersomnia so we went forward with her 2nd sleep test – that doctor was “shocked” that she napped in all MSLT tests (again!) so she has had 2 sleep studies since June 2014. Thanks – much appreciated.

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Alaina October 16, 2014 at 4:39 pm

Julie,
The information you’ve provided it very helpful and informative. My son is 12 and has Narcolepsy. He is really struggling in his Reading Class in middle school. He has sleep attacks during the lesson and after school he is too tired to read the material/novels. Do you have any suggestions? This is the hardest subject for people with Narcolepsy. I also have the disability. Is there any new technology or devices that could help him. My doctor suggested trying Audio Books.

Alaina

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Stacey April 27, 2015 at 12:35 am

http://askjan.org/media/Sleep.html

The bottom of the page has workplace accommodations

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Pam September 29, 2015 at 3:32 pm

I was wondering if anyone could give me information about accommodations for children of Narcoleptic. I currently have accommodations for myself as I attend school online and they have helped tremendously. My main issue right now is getting myself awake on time to get my son to school. He is a GREAT sleeper, and does not wake up to any alarms (so far). I sleep through all of mine, and some days I wake up an hour after he is to be at school and he is still sleeping. I am sure there are other who have had this problem. Before my husband moved out, he made sure we were up for school, etc. Now as a single mom, I do not know what to do. Is there any way that his tardiness or missed days can be looked at differently than the student of someone who does not have N?

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Bailey October 22, 2015 at 5:03 pm

I need some advice. I fell asleep, had a micro sleep episode, during a nursing midterm which caused me to fail it. I’ve only had this happen one other time during my nursing school career, but when I brought the issue to my instructors and dean of nursing, they were less than helpful. It became that I “allegedly” fell asleep and was I even safe to be in the clinical (hospital) environment? Since they weren’t sure if I was they made me miss clinical until my doctor wrote a note saying I was not a danger to anyone or myself. Might I add the fact that I have narcolepsy is documented in my file. So same problem different instructors, do I even bother trying to fight it?

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Natasha December 12, 2015 at 2:45 am

I was also wondering about accommodations for children of narcoleptics. I, like Pam, am also a student (and hoping to be accepted to medical school). So far, my school, including the professors, has been great about providing accommodations. This is huge for me, as I never would have imagined being able to even go to college (much less entertain the idea of becoming a doctor) before I was finally diagnosed! My daughters’ school, however, has not been understanding of my condition and its limitations, at all. Just today, I received letters for both of my girls regarding excessive tardies. All except a couple of times that they have been late, it is less than 30 minutes, and it is almost always 5 minutes or less. Apparently, all that matters is that it is another tardy on the books. Two and a half years ago, they threatened to hold my older daughter back in first grade because of tardies and absences (even though she was at a 3rd grade math level and 5th grade reading level at the time). In the last couple of years we were fortunate enough to be able to hire nannies to help with this, but aside from the high cost, it was difficult to find and/or keep good help. Talking with the attendance secretary has gotten me nowhere, so I was thinking of going in to speak with the principal. I thought it would be good to find some literature about such accommodations, but have been unsuccessful. Of course, the education of my children is my primary concern, but I am also tired of being treated like I am a bad parent. I feel as though the faculty and staff talk about me behind my back, and worry that my girls’ teachers may treat them differently or have unfavorable perceptions of them because of my inability to be punctual. Please help. Any advice or information would be greatly appreciated.

P.S. Sorry for the long post! Thank you to any and all that took the time to read it.

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Taylor September 13, 2016 at 10:30 pm

I have an 8 year old non English speaking student who was just diagnosed with acute onset narcolepsy with cataplexy. He is due back at school in a couple of days after several days in the hospital. No meds at this time. Upstairs classroom. Can anyone advise on what some of our next steps should be?

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Lennis Sadler January 29, 2017 at 12:23 am

Hi everyone,

My daughter was diagnosed when in the third grade. She has been given accommodations both at her elementary school and middle school. She is now heading to high school and I am not sure what I need to do to meet her needs. She will be in 9th grade this fall, and I have already started talking to the HS counselor. One of the accommodations she was given in Middle school was having her PE period waved so she can take her nap at that time. In HS however, the counselor is telling me that she will not be able to graduate if she does not take PE. They are telling me that she needs to replace PE with a 6th class so that she has enough credits to meet the requirements to graduate. The only reason I was asking for PE to be waved was so that she has that time to sleep, so adding another class will take that time away… I am not sure what her rights in this case. Can anyone share suggestions on how to go about getting her time to nap while still allowing her to graduate without having to add extra classes to her plate? I would like to be prepared when I meet with the principal, and be able to offer suggestions or examples of what other schools have done to accommodate students with Narcolepsy.

Any help will be greatly appreciated!

Thank you!

Lennis Sadler

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