19 replies to this topic

[camashmom]

My son will be attending college in a few months and the disability department will need a letter from his Neuro. Does anyone have a sample letter that they used as his Neuro. wants to know what type of wording he should use to request the accomodations.

[Katieintheburg]

I'm a senior at college and I don't think that my school, Virginia Tech, makes accommodations for it. I have never tried to go through the special needs deptartment, but when I asked to be force added into a later classes because 8am classes are very hard for me I was told that narcolepsy was not a good reason. Good luck

[Lais02]

Katie- Sorry to hear that. I think that's crazy! N is best reason I can think of to not take an 8am class. Does your school know you have N... have you had your doctor send a letter? It's taken my school a while to figure out that I have N. It took 5 letters from 4 doctors! But now they're actually trying to work with me. I would talk to your doctor and see what he/she thinks would help you. Have him/her send a letter... it does make a difference.

[Bill]

I have a somewhat unique perspective about this topic; I have been a college instructor, and am currently a full time student. I was diagnosed during the time I was teaching, and talked with my Dean explaining the illness, and how it effected me. I didn't ask for or need any special accomodations, but she was aware that I may nod off if I was alone in my office (I let my students know as well, so they didn't get concerned if they walked in and found me sleeping.) The illness didn't effect my ability to teach, although I would lean aginst the board if I was going to inject a bit of humor, which would cause a bit of a cataleptic response.
As a student, I considered asking for special attention, talked with the staff in that office, and we agreed it wasn't necessary-but if I need their help I could come back anytime. What I have done is 1. I schedule classes earlier in the day, but if I'm stuck with a late afternood class, I take a 10 mg ritalin tablet at lunch time.(My Doc allows me a small perscription to take when I need to stay allert.) 2. Don't drink alcohol anytime. Alcohol is a strong sedative that make your Narcolepsy worse, and doesn't interact well with most of the medications we use. Giving up the drinking should be an easy tradeoff for your education. 3. I usually tell an other student in each class about N, and often end up telling the instructor, too. I am 61 yrs old, carried a 3.8 GPA last year. You can too!!

[merrymom1013]

Katieintheburg, you say you didn't try to go through the special needs deptartment. That is the crucial first step, and asking for priority scheduling of classes is a good accomodation- whether you can't do early morning clasees, need a break between classes or can't do late afternoon classes. A friend directed me to the form that Denison University asks doctors to fill out for students with chronic medical condiitons- I think it is a great template for a doctor's letter. Here is the link:
http://www.denison.e...onofmedical.pdf My daughter is just beginning to look at colleges, but a crucial piece is trying to get a sense of how well she can function there with her medical issues & how disability friendly they are without disclosing too much too early.

[Marcianna]

I went through the disabilities department and they did nothing. So When I started classes, one of my professors who was on some comittee or something went out of his way to fix things up for me. For starters, I never got in trouble for falling asleep. Ever.
And for classes that were early, if they were not available later in the day or online, were video taped for me, I didn't even have to be there. but to actually get the credit I had to meet with a tutor in the evenings to go through anything on the tape, and to get my actual credit hours. I also had another student who took notes for me in all my classes. I took notes too in the classes I was in, but This way I had back up incase I didn't get something. My professor was an absolute blessing! He got all this set up for me and I only go part time.

The thing is accomadations can be made. It is just getting the right people up off their lazy butts to do it.

Good luck!

Oh and I forgot to mention, For Chemistry, I was not required to participate in the labs. I just had to be there to watch them. Mt professor in that class was great too!

[Katieintheburg]

I know that going through the special needs dept is the only way to get special needs met, but it's never been so serious that I've needed to go through all that. The biggest problems I've had with scheduling all come down to one issue and it's not an issue that will be solved by a medical note. After freshman year I went on medication and that made a big difference. Sophomore year I did take one class after lunch and after I took my 2nd pill and he still managed to put me to sleep everyday, but that was mostly because he was boring haha.

[lilitln906]

My son never went through special needs when attending college but what I did do his first year was to have his sleep doctor write a letter explaining his condition when he was in the dorm and I made sure we got a private dorm room. We did not think he should share a room not knowing what type of roommate he would get. We felt if he needed to take a nap and do whatever having a private room would be better.

Also another thing he did was to buy a good recorder to tape his classes just in case he had the urge to fall asleep. He did tell most of his teachers just in case he did fall asleep.

Although the college he started out at did not work out (not because of narcolepsy) he is now taking on line courses at home. He also travels managing and touring with bands and this works out so much better for him.

Its always a struggle for him.

[sleepybrown]

I am a college student and our Office of Disabilities Services required a letter that my neuro mocked up for me but I was wondering what you and your son might expect from the school's office or if you had discussed with them what they can do for him? At my school the best they could do was give me early registration but they enroll freshman in a handful of classes automatically so I couldnt make use of that accomodation until the second semester. One thing that I found helpful was the books on tape. Reading for the Deaf and Blind type books. You can turn up the speed on the person reading your text book to you and you can submit any text book and they will find it and record it for you. I have problems sitting for long periods of time reading text so it helped me to be able to clean my room or fold my laundry while I was reading the school work.

My son will be attending college in a few months and the disability department will need a letter from his Neuro. Does anyone have a sample letter that they used as his Neuro. wants to know what type of wording he should use to request the accomodations.

[Lais02]

I am a college student and our Office of Disabilities Services required a letter that my neuro mocked up for me but I was wondering what you and your son might expect from the school's office or if you had discussed with them what they can do for him? At my school the best they could do was give me early registration but they enroll freshman in a handful of classes automatically so I couldnt make use of that accomodation until the second semester. One thing that I found helpful was the books on tape. Reading for the Deaf and Blind type books. You can turn up the speed on the person reading your text book to you and you can submit any text book and they will find it and record it for you. I have problems sitting for long periods of time reading text so it helped me to be able to clean my room or fold my laundry while I was reading the school work.

That's a great idea... I just might need to look into that

[Kimberly]

Check out JAN (the Job Accommodation Network), which is a website put on by the Office of Disability Employment Policy, the U.S. Department of Labor.

JAN is an incredible resource of recommended accommodations for all types of disabilities and conditions. Narcolepsy isn't listed specifically in their A to Z list, but Sleep Disorders are. They are a respected and credible source of recommended accommodations based on the limitations that an individual might encounter based on their disability.

In addition to their workplace accommodation series, they have an entire section devoted to accommodations for educational settings.

http://www.jan.wvu.edu/portals/ed.htm is the link to the educational portal.

[Katieintheburg]

Update: After graduating from Virginia Tech in 2009, I moved out to Illinois to go to the University of Illinois for graduate school. I decided I was going to go through the school's disabilities department so that my professors would work me if needed. The disabilities department, or DRES, said that narcolepsy was not one of their approved disabilities. DRES files each student into a disability category, so they were still willing to work with me as long as I was willing to let them call narcolepsy a psychological disorder. I said no. I am a firm believer that we should not stereotype mental disorders and people should feel comfortable getting help when needed, but I am going in to the student affairs profession to work with students at college and the last thing I need is a record saying I had a psychological disorder. I've never heard anyone say that narcolepsy could be classified as a psychological disorder, has anyone else?

Since I didn't want to go through DRES, at the beginning of each semester I talk to my professors about my condition (and explain why I did not want to go through DRES, which they all have understood) and I have given them a copy of my doctor's note if they need it. So far I have only had to ask for special circumstance once.

[narcats]

it realy no one buiness to know what the problem is--but for use it depends on whats going on - the who what where why thing- we tell the teachers so when theirs a problem they don't run around like a chicken with it their heads chopped off-- panic--even when we tell them - the first times a shock- what a sight to see-- I sit in the back and last year his sister started they sit toghter- I'm his offical aid-I'm reg with the school---our school has its own forms-now if we can get a Dr to fill them out proper--son counslors father has n/c so she knows all about it first hand--we ask for a room for any test if he needs it that includes more test time--cart service when he has problems walking to and from the class or car-always a cart some where-a placker for parking--the school Dr knows- a nurse- serity getting to know him -someone aways calls them when hes having problems outside of the class we educate them--the class he wants are limited- the ones he wants fill fast so hes stuck taking something else which is ok - no labs or field trips or 8:0am classes--if and when he has problems in his foresty class the teacher keeps talking like hes supose to--I deal with him ---some class mates know something not quite right- a few have asked after class we educate them--now if they do something about the smoking in front of the class doors cigs are a big trigger--some schools do what ever they can others are a pain--high school was a pain---never hear of psycholgical disorder I'll look it up to have a laugh -29 UnDxs and Dxs had plenty to laught about-----school starts here for us 23 of aug

[Rgeorgie22]

I'm a senior at college and I don't think that my school, Virginia Tech, makes accommodations for it. I have never tried to go through the special needs deptartment, but when I asked to be force added into a later classes because 8am classes are very hard for me I was told that narcolepsy was not a good reason. Good luck

Ok this may not help you now but every college should have an office for students with disabilities (OSD) and if you need a sample letter you can email one of the board directors for Narcolepsy Network and see if there is one that thye can email or fax you. I never knew this was possible but when I tried it they were by law required to give you the accommodations. My problem I have been having lately is that if you don't know what ones you need or they provide you don't know what to ask for. I would say the best bet is to ask for a tape recorder for your lectures and you can get them handheld with a usb attachment to just plug straight into your computer, a note taker (which the school pays a student in the class to take notes and copy them for you which I use along with my notes as well), extra time on tests, extra time on assignments, a waived attendance policy in case I sleep through, etc. The help is there, with a DR.'s letter they can't refuse it and if they try to there are ways to fight that (diplomatically and respectfully so you can educate them on a disability they are unaware of) and it is something I don't necessarily use for all my classes but I at least have a list of accommodations that will transfer with me everywhere. I hope this helps!

[mgl]

My son never went through special needs when attending college but what I did do his first year was to have his sleep doctor write a letter explaining his condition when he was in the dorm and I made sure we got a private dorm room. We did not think he should share a room not knowing what type of roommate he would get. We felt if he needed to take a nap and do whatever having a private room would be better.

Also another thing he did was to buy a good recorder to tape his classes just in case he had the urge to fall asleep. He did tell most of his teachers just in case he did fall asleep.

Although the college he started out at did not work out (not because of narcolepsy) he is now taking on line courses at home. He also travels managing and touring with bands and this works out so much better for him.

Its always a struggle for him.

I'm taking on-line courses right now, and it's fabulous. They're prerecorded, so I just rewind for stuff I missed (or do things in the room while listening).

[AckDreams]

Most schools will allow learning disabled students have a note taker (usually they just have a fellow student in the class give you a copy of their notes each week.) Being granted priority to get into classes earlier in the day, priority to be given a dorm room to yourself or on a quiet floor isn't uncommon. I'm sure most schools wouldn't mind offering to let a student with N to discuss their special needs with a representative from the campus public safety office etc.

[narcomomanddrumgirl]

Something I've been thinking about with my high school junior as we look into colleges is how it could possibly work having roommates. The meds, schedules, etc. seem like it would make it very dangerous. I have another year and a 1/2 to worry about it, but am thinking it would be better for her to stay at home and go to the university in town or city college. Does this sound like other parents of college bound students?

[merrymom1013]

Lisa,
My daughter is living in a dorm almost 4 hours from home. I had (still do) my reservations, but she really wanted to go away. We made sure to research housing at every school she looked at to make sure there were some single rooms somewhere on campus.
No schools will promise a specific accommodation ahead of time, but most disability offices were willing to hypothetically talk about housing accommodations. Only one school was extremely negative in response to my daughter's inquiry.
I encouraged her to apply early & make her decision to which school before the deadline so we'd have time to get the housing arranged. Talked to her doctor by junior year- he agreed she needed a private room to maintain a regular sleep schedule & an opportunity to nap, to keep her medication secure & to ensure her safety while she is taking xyrem at night. He also suggested air conditioning (for quiet napping & more comfortable sleep). By fall of senior year, he had written a detailed letter to that effect ( after I checked each college website/catalog to find out exactly what documentation was needed). We sent the letter to her top school choices as soon as she was accepted.
We met with the disability person at my daughter's top choice school- after reviewing the doctor's letter & her high school accommodations, he agreed she would get a private room as one of her accommodations. He actually suggested a private bath, so she doesn't have to wander down the hall at night on xyrem. We do pay the higher single room rate, but she gets her room assigned before the housing lottery for returning students & before new students. The doctor has to complete a short request form once a year. Her current room (designed as a handicapped accessible room) is bigger and nicer than all of the nearby doubles.
I agree that living at home can be a better choice for managing the sleep issues, though you would want to consider the commuting back & forth (alertness needed) & whether there is a place on campus to rest or nap between classes. Dorm or commuter, another accommodation you might encourage the doctor to justify is priority scheduling. If your son gets that, he can register for classes with the athletes & other special students who need a certain schedule. He'd have a better chance of getting classes at times that work for him (no early AM, breaks in between, etc).
Commute or dorm, the secret for us was extra research & planning, so that those issues were among the first things we thought about in the college planning process.

[ImSleepin]

I know that some of these posts are a few years old, but it makes me so frustrated to read that some of you were told that narcolepsy wasn't a "good" reason/excuse, or that they wouldn't accommodate narcolepsy. Were these just people/students working in the disabilities office or were they the people who were actually in charge of the department? It just seems like it goes against the Americans With Disabilities Act if they're not willing to recognize that you have a condition that greatly affects you. I mean, this is straight from the ADA:

To be protected by the ADA, one must have a disability or have a relationship or association with an individual with a disability. An individual with a disability is defined by the ADA as a person who has a physical or mental impairment that substantially limits one or more major life activities, a person who has a history or record of such an impairment, or a person who is perceived by others as having such an impairment. The ADA does not specifically name all of the impairments that are covered.

http://www.ada.gov/cguide.htm

This is information about protecting students with disabilities:
http://www2.ed.gov/about/offices/list/ocr/504faq.html

And this is information about the Office for Civil Rights, in the event that you are discriminated against or treated unfairly:
http://www2.ed.gov/about/offices/list/ocr/index.html


I replied to another post with a rough example of what my doctor wrote in the letter for school, in case anyone would like to see that. It seemed to take a while to file and process, but when I called they were just finishing everything up.

[Kayra]

Katie- Sorry to hear that. I think that's crazy! N is best reason I can think of to not take an 8am class. Does your school know you have N... have you had your doctor send a letter? It's taken my school a while to figure out that I have N. It took 5 letters from 4 doctors! But now they're actually trying to work with me. I would talk to your doctor and see what he/she thinks would help you. Have him/her send a letter... it does make a difference.

I'm taking an 8am class, worst idea EVER. by some miracle I can drag myself there but literally sleep through it every time. Luckily some teachers don't get offended others however do and try to make things so much more difficult.