14 replies to this topic

[nike0518]

Hello im 16 years

1st I am very grateful for this site because i was just looking through the forums and i clicked on a question about education because i barely at the begging of my junior year (Im a junior) got diagnosed. I found parents talking about a 504 plan and benefits you receive if you have narcolepsy.

 

this is of great interest to me because my grades never exceled even though they could because i was just so tired and had very bad memory and my grades were only minimum as in just passing .

 

i only got diagnosed because i decided to give it my all jr year in hs because i decided to follow my goals. and begging of jr year i noticed my symptoms werent normal for healthy ppl so i looked into with it my dr and got diagonsed and am currently on meds. 

Sorry for my background info but i just have questions i really would like to ask here.

 

18mg I noticed that some of the meds ive tried (1st nuvigil and then concerta 18mg and now ritalin 20mg 3 times a day) is that i lose track of time very easily and almost always . As in take forever to do one page of hw that should not take 2 hours . this has affected my grades at times for hw and assignments because i dont end up finishing them .  

 

another very recent example is that i pretty sure i failed the taks test (11th grade jr yr) just a few weeks ago because i did not finish a large portion of the test by 4:30pm and the assit principal didnt want to give me more time bc he said he wasnt required by law and needed to go home. i have nothing against him bc he doesnt know me personally but i was testing in a large gym and the only clock was behind me at the bck so i lost track quick ....    BTW i live in texas and taks is standarized test everyone has to take.

 

so i was wondering if bc i have narcolepsy ( w/o cataplexy)

1. could i get extended time for my assignements and tests ??????  ... because i want to apply to ut austin and texas a&m for aerospace engineering nxt yr.                   so grades this yr are critical
2. i have very disappointing gpa of 2.9 bc of my frshman and sophmore yr and i wish i would got treatment earlier bc i know i can do better w meds ... extremly better too but is there anything i can do about that??? i dont think so bc damage is done but ill ask just in case i could bc gpa is everything to ut and 2.9 aint much ​....

i was able to raise it in one sems this yr to 3.0 gpa unweighted and my rank isnt good either bc my school is very large about 4500 students in total . i attend duncanville hs in texas... one of the largest in the nation so i heard .. rank is top 30% in my class of 850 students.... so i can only improve my gpa so much in one yr ... which makes me sad that i didnt get diaganosed earlier ....  and this is the last yr to improve gpa....

 

• is there anything i could get like sitting at front of class ?
• if i dont have cataplexy can i still get a 504 ?
• How can i get one bc i want get it asap bc time is crucial and im preparing for the act next month so i really need a 504???
• any help would be deeply appreciated bc im really trying to pursue  my dreams no matter what...btw will they look at my grades this yr bc i got almost all my classes straight a's 

 

 

[munky]

Yes, you should still be able to get a 504, even without cataplexy. Narcolepsy w/o cataplexy is still a life-long, disabling illness, and qualifies under the ADA, which means the school system is required, when asked, to create a 504 plan and use it, just as they are supposed to for kids with ADD/ADHD and other disabilities.

 

Extra time on assignments and tests is a very, very good idea, and should be part of your 504. The 504 must be followed for all assignments and tests, including the TAKS, and should be accomodated for the ACT as well.

 

I don't, unfortunately, know how one goes about getting a 504 plan, having never been a parent myself. My mother got one for my nephew, however, and I'll be happy to ask her about it and let you know what she says. We weren't in Dallas, but we were in Texas, so it should at least have some relevance. In the meantime, you might want to read this article: http://www.greatscho...-section-504.gs.

 

Alas, there is nothing you can do about your previous GPA. While applying to college, however, you should have the opportunity to explain it. I don't know if it's still true, but way back when I was applying for colleges, most applications required some sort of essay. If that's still the case, write your essay about how sleep disorders affect students, how difficult it can be to have them even acknowledged by adults, let alone diagnosed, and how much an effective treatment regimen can improve a student's abilities in school.

[nike0518]

yeah as soon as i got diaganosed i realized i could put it as one of the essays bc in tx essays are same for public univ. and 2 essays are mandatory but one could do the third and the 3rd is about anything you think the univ. should know ...

also im pretty sure losing track of time is a side effect of the meds bc time flys very very quickly and easily ... so could i still use that in the 504 as a reason for extended time bc it isnt necessary a effect of narcolepsy but it comes from the meds ????

 

ill be heading to see my couselor in a few days about the 504 plan, how should i tell her? she already knows i have N and was amazed by my "story" so i dont know if she will "turn on me" if i ask for a 504 plan....or understand me ... ive been in touch frequently this yr and w the schools college counselor bc of constant edu questions .... both actually know about me having N ..

 

what does my parents have to do bc she is ok about my diagonosis but i can tell they are those type of ppl who never believed in such "medical conditions" or that I " can naturally fight the sleepiness "(which i tried with enery drinks and loads of coffee first month but i reached a breaking point after only a month of constant "pushing hard ")...I dont really mind bc they at least buy my meds and cpap, and my mind is on school and these stuff dont really matter at the moment as they let me get treatment  ...I can tell them to help but idk what to tell them what to do , which is why i ask here so i could tell them.

[nike0518]

http://www.greatscho...-Section-504.gs

 

• btw this was a related link to the webpage you gave me which i thank very much for bc it elaborates alot but this link has even more and related as an update with the law that recently passed in 08 i believe resulting in better 504 coverage 
• putting it up if anyone else needs info

[munky]

My apologies, I only saw my mother very briefly today, and I forgot to ask about this. Just sent her an email, though, so I won't forget. I'll let you know what she has to say tomorrow night, when I get back on.

 

Your school counselor should be able to answer your questions, too. And losing track of time could be the meds or the narcolepsy. I mean, people with narcolepsy--even with treatment--are basically living with constant sleep deprivation. Sleep deprivation can cause a lot of problems, including memory problems and being very easily distracted, which would make it seem like time just flies by. That's why a lot of people with sleep problems get misdiagnosed with ADD/ADHD. Either way, as far as I know, it should still be covered by the 504. I am not, of course, an expert by any means.

[nike0518]

how do you ask for the accomodations(in paper ) like do i have to list all the ones i want?

[tjunderw]

I have not actually dealt with a 504 plan, but I work directly with IEP's so hopefully I can help a bit. Bring a copy of any diagnostic information from your doctor when you meet with your counselor and try making a list of situations or activities that are hard for you (ie. test time, staying awake in class, inability to focus, so on...) which will give her a full explanation of your condition. The issue will be seeing how your school classifies narcolepsy, as many disorders are clumped into one category, and I'd assume it would be under "Other Health Impairment" or your school's version. From there your counselor will start the process of having you apply for services, which will probably involve parent request for service forms, eligibility determination, and a meeting with your counselor, parents, and school officials. Based on how you qualify, a plan will be made to accommodate your individual needs in your academic environment, but no curriculum changes can be made under a 504. Your counselor will tell you everything you need to know, so help her start the process by being prepared with as much information from your doctor, how your struggles are effecting your academics, and what you would like to see done. Hopefully you get the accommodations you need, and it's great that you are advocating for yourself! I'd be happy to answer anything else I may be able to help with.

[nike0518]

i just met with my couselor today and we discussed me wanting a 504 plan.

i told her about my narcolepsy and how it effects me and she plans on giving me paperwork, to start the process, tommorow.

also she said that she doesnt think ill be able to get extra time on the taks? im not sure if i could and she said i cant get more time on class tests that require more than that class block. 

but she said isnt completly sure and she will look into it to check

[2Tired4This]

Hey Nike0518, it really sucks what you're going through, and I COMPLETELY level with you 100%. I just turned 17 this month and am struggling with similar issues. I have Narcolepsy w/o Cataplexy and was diagnosed in November of this year. 

 

Fortunately though I have a 504, my mother, god bless her, took care of all the paperwork and formalities for me. I strongly suggest that you pursue a 504 plan.

 

Some exemptions I asked for in my 504, and received, are: 

 

Extra Testing Time

Extended time to turn in homework assignments

Extended # of allowed absences. (Ive missed at least 10 this semster already, the state maximum.) 

Should you need to take a nap, the freedom to go down to the nurses office. ( I never use this one, simply put, what PWN is going to/ able to walk all the way to the Nurses office just to nap? When I get an attack I just prefer face planting into my desk. )

 

I didn't really ask for much because my main problem is finding the time to do any hw, being unable to stay awake for a single lesson, and some days just not coming because of the whole wake-up trauma. 

 

Sleeping through every lecture, coming home and falling asleep, and waking up at 1:00 or 2:00 in the morning to try and get 30 mins of hw in was not enough time for me to be proficient at school.

 

 

When you say TAKS im sure your'e referring to a standardized test in your state, and I'm sure there is a provision that will allow you to get extra time. When i go to take my AIMS and SAT (standardized tests) I will receive extended time if I ask. 

 

 

 

 

 

ANYWHO:

 

I can completely sympathize with you, like I said, I'm in a very similar situation. It's insane how much teachers didn't want to believe that I was just exhausted all the time and not trying to be a slacker. Because of the nature of N it's extremely hard for others to understand the symptoms because it's not physically evident. I can't even count the number of times I've been metaphorically wacked on the back of the head during class for sleeping. I encourage your looking into a 504, because it's worth every effort.

 

Since being medicated on Provigil and Dexedrine I haven't needed to use any of my exemptions and am doing extremely well. It's still nice to know that I have some exemptions to fall back on.

 

I just wanted you to know that you are not alone in all of this, there are other high schoolers like you and I who are being shot down in their prime ahah. We just all need to buckle down and show these old geezers with N what the power of youth looks like. 

[nike0518]

oh cool and I'm in the med trial and error stage, how do you afford provigil.... I've tried concerta 18 mg twice a day, nuvigil twice a a day150mg, ccurrently ritalin 20mg 3times a day and I still need higher dosage

[2Tired4This]

Nobody affords provigil, haha. XD It's insane expensive, but my family's health care hit its deductible at ~2nd refill. Thankfully my parents have good jobs, and I try to contribute with the $ i saved up before I couldn't work anymore. 

 

My lowest point was the trial and error stage.

 

It's hard knowing what's wrong with you, that theres medicine to fix it, but that you can't find something that works for you. 

 

My personal opinion of Provigil is pretty poor. It's effects are pretty nominal for it's price. Provigil/Nuvigil are pretty much the same. I read one too many posts about provigil becoming pretty much useless after 2 or 3 weeks, and have personal experience to back that up. 

 

 

Finding the right combo sux, but eventually you will get there. And then youll have to keep tweaking it throughout the rest of your life, depending on how fast you build a tolerance, etc. Be wary of the emotional and psychological effects it has on you though. The whole process is about listening to your body, but also listening to yourself. Try to be very attentive to how you're feeling emotionally on some meds, no matter how much of a boost it gives your energy it's not worth it if you start feeling psycho. Coming down off Dexedrine in the evening can have this effect on me some times. Not a good feeling. 

 

My life b4 my meds was pathetic in comparison to how it is now though. I never knew you could get so much done in one day. Once you get there, enjoy it. 

[nike0518]

in that case I'm sticking to concerta

[nike0518]

just talked to my counselor yesterday and she said the school found my records of my sleep studies were enough proof, and that i dont need drs note.

i just turned the parent consent form today in the morning. now im just until they call me in to the counselors and get thru the next step ..

cant wait for me to get approved

[munky]

Glad to hear it's moving forward! As for extra time on tests, that was one of the accomodations my nephew had in school. If it ran outside the normal block of class time, he had to go to another room to finish the test--I don't remember what they called it, but it was basically a tutoring center. He also got extra time on the TAKS test.

 

His accomodations were for ADD and dysgraphia, but 'extra time' should be treated the same in any case. This was in Texas, but not in the same school district. Still, I'd think it'd work the same.

[nike0518]

Hi sorry for not being on here for a while but I'd like to update and say I met my counselor today and she told me that Monday "the board" will meet with me and my mom to make accommodations official!

So far my requests are extended time on all assignments except for hw,
and get to stay after a class period if I need to finish an assignment,
change my seats to the front if I ask
Frequent bathroom breaks during class bc all the water I consume to combat dehydration effects of my medicine
Allowed to eat snacks during class since it helps with the "ritalin roller coaster"

So I am very excited and
thankful for everyone on narcolepsynetwork and the website.. This has literally changed my life and taken a huge burden off me....
Without this website I would probably never of known about my rights and a 504 plan...
So very pleased and feel relieved hopefully no more late nights of studying but I will update after Monday