Posted 26 October 2007 - 04:16 PM
Exempt from lateness policy (high school)
Designated place to go take a nap if needed
Permission to leave class to nap if needed
Extra time on tests
flexibility/extra time for assignments & homework (sometimes she could make it to school, but be too tired to do homework)
Air-conditioning- especially for exams & other tests (her old school had a/c, this one doesn't- it really affects alertness & even cataplexy for her)
Copies of notes
Allowed to tape lectures
Preferential scheduling (in high school may be first period study hall if you have trouble getting up on time or a midday study hall to nap then)
No unprotected heights in gym (climbing the rope, certain gymnastic equipment, etc)- this one was added by her sleep specialist due to the cataplexy
Training for school staff- we have offered brochures, videos, to do a short presentation
Posted 06 January 2008 - 01:10 AM
My neurologist is the only one in town so he acts like he does't have time. At times I just feel overwhelmed. I had to try the ritalin at first and it made my face turn purple and my heart race. When I tried to get the Provigil my insurance company still fought the doctors. When I try to tell my nuerologist about a new site affect or something I feel he looks at me like I'm stupid and says "well you we're fine last time." I hate when people second guess me! "Well I'm not fine this time!" I may be 21 but ever since I was diagnosed at 18 I've had to go alone to everything. It's scary and my family doesn't understand they all just think I'm lazy. I feel like a freak. Now I have to take these papers to the neurologist and I don't know how he's going to react.
Thanks for these suggestions, this is just what I was looking for for my classes at night. Of course I can't take take the naps, but I can get the extended time for test and quizzes. If you don't mind me asking does she have a hard time staying awake during movies or while reading? If anyone can answer this, I just wanted to know if it's just me or if it's common among others?
Posted 13 February 2008 - 12:29 AM
The disability services person at my university seemed oddly excited that I have narcolepsy. I think I'm the first one there. Many people don't understand narcolepsy, so I try to explain it to my profs before classes start or at least the first week. They seem willing to help, but they do need you to suggest what should happen differently. I get extra time on my exams and even a break midway through an exam so I can get up and walk around. I am able to leave the class to walk around if I am getting sleepy. I have note takers so I won't miss anything.
My best advice is to talk to the profs. They are more understanding than you initially think they would be. If they are assuming things will work that won't, then try to explain to them how your typical day goes. They don't have narcolepsy and therefore they have no clue! Communication is your best bet.
And by the way... I used to fall asleep every time I tried to study, during every class, and sometimes during movies. The worst part for me is waking up. My roommates are awesome at helping me wake up. I set 3 alarms and still don't flinch My alarms wake everyone else up though! I did get a vibrating alarm clock which works a little better for me. It just has a disk like thing that goes under your pillow. If you have trouble hearing alarms try that. I got it at Sharper Image.
I hope that helps somewhat, sorry it got so long.
Feel free to send me a message if you want to talk more.
Posted 16 June 2008 - 06:25 PM
I am a masters student...I am still trying to deal with the emotional ramifications of this condition, but I can tell you alot about how to get assistance at school!!!
When I joined my current university, the first thing I did was ask how to contact the disabilities department. When I applied, I applied as a student with disabilities which put me in a different consideration track...I had good grades, but you get so few things back from being narcoleptic, I figured I'd take any leg up I could get. My university allows me to discretely take my exams in a private location, extension of time for exams, consideration during oral exams/ written for grammer and spelling, note taker if I need it, I can tape my lectures, additional time for papers, and extension of time for my total program if needed.
Personally, I try to use my assistance as little as possible. I try to function as much as possible with the help because I know I am not going to find such consideration when I leave school. It's nice to know it is there though when I need it. I also get unlimited counsiling if I need it.
My professors are never told why I need this assistance, and for nosy students, if you feel you need to tell them anything, I just say that I get clausterphobia during exams and need extra space. You can get accomodations for exams if you find the lights annoying .
As far as tricks for day to day class...I bought Dragon Naturally speaking. I find that my talking my notes into the computer, it helps keep my brain awake and I retain more. Additionally, I don't study at the library, I have a quiet comfy spot in my house where I study and can take little sleep breaks as needed with an alarm clock that will wake me up after 20 minutes. I try to work with my narc, not against it. I know I can't study 2 hours straight. The dragon works well for taking notes for books you are reading and for recalling lectures which you tape (buy the advanced version). It takes a while to get it running at an acurate level, but it worth it.
additionally, invest in a digital device where you can program everything into. I ahve a blackberry and couldn't survive without it. I program everything from appointments to homework into it and have it send me multiple alerts to remind me.
Hope this helps. Feel free to contact me for further clarification or to vent.