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#21 Marcianna

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Posted 26 September 2008 - 10:06 PM

I am actually working through the disabilities resources and they just dont seem to get it... There is a couch in the lounge, but I'm one of those people who needs it super quiet. They do have private study rooms in the library and else where, but they are for "studying" (sure like we dont know that people go in there just to make out... lol... What a crock!) I haven't thought of the mothers room yet! I don't even know if we have one. If we do I'm sure I have to be a mom to get in. I really hate to go to the Dean, because the woman I am working with is so nice, but she doesn't seem to understand the severity of this. Today I did one of those half awake half asleep thing during a math test. I got 2 out of 10 right. very bad. After that I went and walked around and smoked alot of cigs and came back, and my teacher let me take it again. and tada! 10/10. Obviously. The thing is I KNOW that if I had taken a nap, I would not have even had to worry about it. Sooooo annoying. I'm just glad my teacher was cool about it.

so if I do go to the Dean and then nothing happens still... do I have to ge a lawyer or something? I'm not worried about that just yet, but if it comes up, I just want to be prepared.

#22 Kimberly

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Posted 27 September 2008 - 09:28 PM

You don't have to get a lawyer.. the Office of Civil Rights, US Department of Education is on your side. You can file a complaint with the OCR if you don't get anywhere with your school. http://www.ed.gov/ab...intprocess.html

As a student over the age of 21 with a disability, you are protected by the following acts:

Section 504 of the Rehabilitation Act of 1973;
Title II of the Americans With Disabilities Act of 1990
(students under age 21 are also covered under IDEA)

Under Section 504, your post-secondary education institution is required to provide appropriate academic adjustment as necessary to ensure that it does not discriminate on the basis of disability.

If you believe the school is discriminating against you or not allowing you the opportunity to fully raise your concerns, you should go through the school's established grievance policy (the Program Coordinator for Students With Disabilities should have information about this). If you are dissatisfied with the outcome of the grievance policy or if you want to go an alternate route, you can file a complaint with your local Office of Civil Rights (first link, above).

Here is a link to a few publications from the U.S. Department of Education that are targeted toward students with disabilities: http://www.ed.gov/po...disability.html (this is where I got a lot of the info for this post).

Here's another article -- very comprehensive discussion of the different protections that students with disabilities have: http://www.ldonline.org/article/6082

I would imagine that just sitting down with your Disability Coordinator and asking about how quiet napping facilities for a person with a sleep disorder are NOT covered by Section 504 -- the fact that you know the statute by name/number might spur the person to work a little harder on your behalf. I hope so, anyway.



On another note, I'm very glad that your math teacher allowed you to retake the quiz! Good job on the 10/10 score!







#23 Marcianna

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Posted 28 September 2008 - 09:15 AM

lol.... my friend said to pitch a tent in the front lawn and take a nap. As a protest. That is sooooo something I would do! to bad I cant just carry a tent around! But seriously how funny would that be. I'm sure I would get someones attention!

#24 Mike M

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Posted 28 September 2008 - 02:28 PM

QUOTE (Marcianna @ Sep 28 2008, 09:15 AM) <{POST_SNAPBACK}>
to bad I cant just carry a tent around!


I am pretty sure that an outdoor store like REI would have a super portable, small tent. They could even market it for PWNs - "The Daysleeper - perfect for a quick nap between classes, or a stylish protest on the Disability Counselor's front lawn." I hope you can get the school to wake up (pun intended) to your narcolepsy.

#25 becky

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Posted 28 September 2008 - 09:37 PM

Hahahaha...awesome. I have a tent in the back of my car...never thought of using it that way though : )

And Marcianna!

Feel your pain. I've got the same problem--there's plenty of comfy places to sleep in the library or the nurses' station or wherever on campus but they either won't let me sleep there or can't accommodate it to what I need, which is basically really dark and quiet--otherwise I'm too self-conscious and can't get my mind to settle down enough to fall asleep or I get distracted by noises and lights (that's where the fun part of the ADD comes in...woot. If I were only hyperactive as well--maybe then it could help cancel something out...le sigh!) The one thing I've tried that's worked a little (though isn't all that comfortable) is grabbing a single desk in the library and putting my head down in my arms to block out the light and taking a quick nap--you know, first grade heads-up seven-up style. Our library's a veritable labyrinth and there's several floors where they have a few single-seater desks and keep the lights off because they're visited so infrequently--bring your iPod synced up with some white noise and try passing out there if it's an option! And yes, it sounds a little desperate but hey, when ya gotta sleep ya gotta sleep.

The disability/learning center guy I work with is soooo so nice and cool but just doesn't get the entire picture either...He and his wife just had a baby boy and he says he thinks he understands a little better now what it's like to live with Narcolepsy...oh man, if he onnnnnnly knew...

#26 Marcianna

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Posted 29 September 2008 - 12:21 PM

QUOTE (becky @ Sep 29 2008, 03:37 AM) <{POST_SNAPBACK}>
The disability/learning center guy I work with is soooo so nice and cool but just doesn't get the entire picture either...He and his wife just had a baby boy and he says he thinks he understands a little better now what it's like to live with Narcolepsy...oh man, if he onnnnnnly knew...



SERIOUSLY? lol.... no way... Dont you want to just punch people in the neck every now and then? Thats like saying I know what it's like to get stabbed cuz I got a splinter once......

#27 sleepy.erin

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Posted 10 October 2008 - 01:25 PM

QUOTE (Marcianna @ Sep 29 2008, 12:21 PM) <{POST_SNAPBACK}>
SERIOUSLY? lol.... no way... Dont you want to just punch people in the neck every now and then? Thats like saying I know what it's like to get stabbed cuz I got a splinter once......


This made me laugh outloud! LOL laugh.gif

#28 Marcianna

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Posted 14 October 2008 - 06:08 PM

Ok got to rant for a second.... People with Neurological disorders should not be forced to do algebra.
Seriously for the love of all things purple!!! It just isn't right....

#29 Lais02

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Posted 17 October 2008 - 06:25 PM

QUOTE (Marcianna @ Oct 14 2008, 05:08 PM) <{POST_SNAPBACK}>
Ok got to rant for a second.... People with Neurological disorders should not be forced to do algebra.
Seriously for the love of all things purple!!! It just isn't right....


I think everyone should have to take Calculus too! smile.gif

Sorry Marcianna... I love math! I'm a wonderful tutor (although I haven't been tutoring lately because of my N). If you need an explanation for some algebra send me a message and I'll give you my phone number.

Good luck anyways!

#30 becky

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Posted 18 November 2008 - 02:07 PM

ohhhhhhh marciana,

i couldn't agree more with you...i do not get math. honestly. just do not get it. hahah my brain doesn't do numbers whatsoever! imagine being pre-med for three years and finally figuring out that i had N and ADD and saying to myself, 'self, this isn't working out--let's try something new,' and then moving to an english major and ROCKING. i mean GAH, the sense of relief! unbelievable. i had to take TWO upper-level calculus courses, not to mention physics and other math in chem and bio classes--balancing equations, calculating molarity, titrating solution strengths, blah blah blah...killlllll me. SO happy i'm finally outta that.

and lais02, you're a brave soul for tutoring and actually doing well in math...i envy you not. i really hope you get to tutor again soon wink.gif


how's everyone else doing in college? i'm still having trouble getting up in the mornings sometimes and then sitting down and focusing enough to actually do work after classes...any of yall found anything (meds, schedule, etc) that's worked well for college life?

#31 Lais02

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Posted 23 November 2008 - 02:06 PM

QUOTE (becky @ Nov 18 2008, 01:07 PM) <{POST_SNAPBACK}>
how's everyone else doing in college? i'm still having trouble getting up in the mornings sometimes and then sitting down and focusing enough to actually do work after classes...any of yall found anything (meds, schedule, etc) that's worked well for college life?


I started Xyrem this semester, and it has really helped me. I can wake up for school now! smile.gif Next semester I won't have any morning classes. Even though I can wake up now... I still think I function better later in the day, so that schedule should help me.

I hope people post other ideas... because that's all I've got for you!

#32 eww

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Posted 16 June 2009 - 10:16 AM

How is everybody doing with classes?

I seem to be almost on track this semester. YAY! My Centre for Disabilities (CSD) advisor is pretty awesome. I get so much support from the CSD in general that I really feel much more positive about school than I did a few months ago.

I hope everyone else is doing well.

#33 Lais02

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Posted 16 June 2009 - 07:11 PM

I did well last semester! smile.gif Xyrem is working very well for me, and I only missed a couple classes all semester which was less than most of the other students... and they don't have N.

#34 Marcianna

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Posted 17 June 2009 - 04:24 AM

myself as a result of the algebra thing I was kinda thrown out for a bit. I am appealing to go bacjk and hopefully can get my financial aid back but we will see. If I do, I will start again this fall.

on a side note...

I had an extremely weird conversation with Lais02 on the phone last night concerning what her idea of fun is.

Let me tell you I suspect that she not only builds robots, but is in fact a robot herself in disguise. its the only explanation I could come up with for her love of math. hahaha sorry girl... Dont worry, I am sure your like a cool sexy robot though. like that old movie Cherry 2000 or something. hahaha!!!!

#35 Lais02

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Posted 20 June 2009 - 11:06 AM

QUOTE (Marcianna @ Jun 17 2009, 03:24 AM) <{POST_SNAPBACK}>
myself as a result of the algebra thing I was kinda thrown out for a bit. I am appealing to go bacjk and hopefully can get my financial aid back but we will see. If I do, I will start again this fall.

on a side note...

I had an extremely weird conversation with Lais02 on the phone last night concerning what her idea of fun is.

Let me tell you I suspect that she not only builds robots, but is in fact a robot herself in disguise. its the only explanation I could come up with for her love of math. hahaha sorry girl... Dont worry, I am sure your like a cool sexy robot though. like that old movie Cherry 2000 or something. hahaha!!!!


lol!!! I assure you all I am not a robot rolleyes.gif I will admit I'm a little weird, but life would be boring if I wasn't.

#36 Mirianda

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Posted 10 November 2009 - 10:39 AM

Hi there everyone,

You make me all so jealous hahahaha... I know I'm a "looser" I quit school because I was falling asleep in all of my classes, exams, work, And didn't get a good night sleep. After failling 2 full semesters and trying for a third (I was depressed a little I had just lost a friend, my momy tried to commit suicide (she has a brain tumor it must be really painful she got operated but it came back) and one of my best friend DID commit suicide) mix that all together + dealing with N... I was just too weak spirited and gave up... But I SOOOOOOOOOO would love to go back to school finish my Cegep (similar to College in Qu├ębec) but I'm engaged and I live in an appartment... Oh and I'm 20 I was diagnosed I was 17 (I think?) Anyways Good luck with your schooling! I do take accounting at night but it kills me! And it's only 1 night per week (I do work 40 hours though)

#37 noddinoff

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Posted 30 December 2010 - 08:03 PM

hey all,

I am a 23 yo Uni student. I was diagnosed Narc/Cataplexy about 3 months ago. I don't have any family in the U.S. but to be honest, Its not a problem. It has seriously affected the past 3 semesters but the most recent semester has been the hardest: I have been dropped from a USMC officer program, lost my scholarship, quit my job at a Scuba diving training center, relationship with the (now ex) girlfriend has ended etc etc. .........im on the edge..... just kidding. I know this will take time to adjust to but I'm sure you all know that better than I.
so far I have had an interesting experience with all of the diagnostics and testing. the Neurologist tries to crack jokes about narcolepsy to liven things up. thanks doc but not funny.


has anyone else found themselves avoiding certain social situations to minimize embarrassment?

#38 MelFromDixie

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Posted 04 February 2011 - 04:52 PM

hey all,

I am a 23 yo Uni student. I was diagnosed Narc/Cataplexy about 3 months ago. I don't have any family in the U.S. but to be honest, Its not a problem. It has seriously affected the past 3 semesters but the most recent semester has been the hardest: I have been dropped from a USMC officer program, lost my scholarship, quit my job at a Scuba diving training center, relationship with the (now ex) girlfriend has ended etc etc. .........im on the edge..... just kidding. I know this will take time to adjust to but I'm sure you all know that better than I.
so far I have had an interesting experience with all of the diagnostics and testing. the Neurologist tries to crack jokes about narcolepsy to liven things up. thanks doc but not funny.


has anyone else found themselves avoiding certain social situations to minimize embarrassment?


Hey noddinoff,

I've been diagnosed for about two years now (Narc w/o Cataplexy), but most of my friends don't understand what I go through everyday. So, there are many times that I avoid social situations to avoid the embarrassment and all the questions. Because of treatment/meds there are also times when I can't be involved, so know that you are not alone.

#39 noddinoff

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Posted 28 February 2011 - 10:00 PM

Hey noddinoff,

I've been diagnosed for about two years now (Narc w/o Cataplexy), but most of my friends don't understand what I go through everyday. So, there are many times that I avoid social situations to avoid the embarrassment and all the questions. Because of treatment/meds there are also times when I can't be involved, so know that you are not alone.


Hey,
No kidding, how are they supposed to understand any of this.
are you open about this condition with other people? I can count on one hand the people that know about mine, and to be honest, kind of regret telling them. Still waiting to let the family know.
Thanks for the bday post by the way :)

#40 sueno

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Posted 29 August 2011 - 08:53 PM

But the one thing I really really need is some place to crash for a bit. The set up here is this. I dont drive and even if I did the school is about 1/2 hoyr away for me. Taking the bus is ok I guess but it only goes out there three times a day 8,12 and 4. during the day time is the times I am most at risk for sleep attacks. so for example, (8 is out completely,) If I go in at 12 and know I wont be coming home till either 7:30 or 9 pm, then at some point, I need to take a nap. I would be nice If I could go home between classes but I cant. the trip itself, takes about an hour and a half, so there is three hours right there coming home and going back.... Meanwhile on this rather decent sized campus there is nowhere to lay down. The library wont let me sleep in there, The nursing dept. wont let me use one of their rooms with a bed in it.
The thing is that naps are so random with me since my schedule is off, I cant even give them a time I need to do this.

That sounds like a reasonable request, especially on a college campus. There is no way people aren't sleeping on their campus at any given time, at least, I would find that really hard to believe. I napped everywhere on campus, outside and inside. Lots of people did, especially in the library. My classes were huge so if need be I could nap in class no problems. I did make sure I had a hat and I always, always sat in back in anticipation I might nap.
As far as having your own place to nap there are smallish beds you can buy you can carry around that are small and lightweight that fold up for use, just in case you need to find a quiet dark room and take a nap. But the floors, concrete, grass, benches, desks, and such worked fine and I would use my backpack with a coat stuffed inside as a pillow and I was not alone by any means.

Regarding telling people - it was a mystery to me why I was so much more sleepy than my friends and couldn't stay awake during the day despite sleeping normal hours at night. So there was no official label or name, however the behavior still became a joke anyway or people would just simply accept this was the way I was. I attempted to take morning classes or do morning activities but those always resulted in epic fails, so I adjusted the schedules to avoid mornings completely. My job didn't understand and I ended up not being able to juggle both a job and college. Which was confusing for me because sleeping cost me many great experiences/career advances, I always thought with hard work I could do whatever I wanted so when I wasn't capable of doing it all or even everything I wanted to do at anytime, even with lots of caffeine, I just figured I wasn't a morning person.