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504 Evaluation In High School


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#1 mickimcc

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Posted 14 September 2011 - 11:16 PM

Hi, My 15 year old daughter is in 10th grade. She has Narcolepsy and was diagnosed right after her 15th birthday. She is on two meds a day (one in the morning and one in early afternoon) to work on managing it. She is a highly academic student and strives very hard to get A's in her classes. She is experiencing tiredness every day at school. She tried a nap in the nurses office one day but said it was too strange. When I spoke with the school psych about a 504 plan, at first he dismissed it and said that if her grades started to fall from an A average to a B average, this would NOT be indicative of a problem since she would still be above average. The following week, I called him to say that it isn't about the grades, but it is about the fact that if her grades fell, it would be due to the Narcolepsy and that she does not have equal opportunity as her peers to be able to stay awake and alert in class. He agreed to speak with his supervisor to see how to handle this. He then called me back to say they are going to do an evaluation on her that includes: observing her at various times of the day (without her knowing he is in the room for her), interviewing last year's last trimesters teachers and this year's current trimester teachers, and then interviewing her at the end to see how she feels Narcolepsy is affecting her. He would welcome information from her dad and I, but that wouldn't be a part of the deciding factor. He, the nurse, counselor and possibly the administrator will make the decision to decide "if Narcolpesy is affecting her to a detrimental level when compared to peers in the daily function of learning." If they feel it is, we can write up a 504; if they do not feel it is, she will not get a 504.

I would love feedback from anyone who has been through this. My daughter is such a high achiever that she will about go over the edge to get through school to achieve an A. I feel like since she is on 2 meds a day and she gets tired by 9:00 am and struggles through and then it all starts again in the afternoon that she is entitled to a 504 with modifications, if she wants to use them. Am I wrong? Are there other ways or things to point out to this team that will help? I do plan to make sure they know it is more than just needing a 15 minute nap that will be a cure all. I am not clear if they understand that or not. I do plan to talk with her doctor, as well, at her next appointment. I am working very hard at being kind and professional with this person and the team, and I want to work as a team with the school. Please, if anyone has any advice, let me know. Thanks! Micki


#2 tdmom

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Posted 15 September 2011 - 07:52 AM

Hi, Welcome to NN , My son was diagnosed with Narcolepsy at 15, he is 16 now. Its a roller coaster ride thats for sure.

One thing comes to mind immediately. If your child is not reaching her potential, no matter how well she is doing she deserves a 504. If she has the potential to reach all A's but can only achieve B's due to her Narcolepsy she LEGALLY is entitled to a 504. Just because her B's make her above average for other children should not disqualify her from a 504. At the very least she will need to be allowed extended time for tests and assignments, to not be penalized should she need to leave the classroom to go take a nap, to be provided with the class content should she miss something while she is napping - and from the teacher, not a friend's notes. I had my sons 504 plan include not being penalized for being tardy in the morning. He has had some GI issues with the meds in the morning. Although he was late for homeroom many times last year he was still on time for first class.

It sounds like they have no idea what Narcolepsy really is/entails. I would get some literature for them. Have you paid for the site? I brought in the book I got in the mail for the school nurse to copy what she needed.

Here are 2 links

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


http://www.slc.sevier.org/iepv504.htm

I had no trouble getting him on a 504. I brought in a letter from his Dr and a copy of the written report after his MLST to the school nurse. She researched Narcolepsy - he was the first in his school with it and came up with these accomodations herself. Its an uphill battle though. Not all of his teachers were good about honoring late assignments. teens don't want us being involved (at least my boys don't) so he didn't always tell me when they wouldn't accept an assignment. For us its a work in progress to teach him to advocate for himself...

all that said my sons year was not great last year and i have asked for him to have a core evaluation. i need to ensure that there are no other issues that are interfering with his education. And a liason would be helpful.

My son also wouldn't go take a nap in the nurse's office. I kept on it, telling him he should at least try it if he had an afternoon test and he finally has done so a couple of times. This year I am determined to be a pain in the butt if the teachers don't comply. Our kids futures are at stake here.

I have also hired an "organizational tutor" for my son. Kind of like a personal organizer for his school work. He was overwhelmed last year and if he got behind couldn't dig himself out. I found a woman who just finished her masters and is starting out as a teacher. She is the daughter of a friend of a friend, and my friend told me how organized this girl is, and since she is a high school teacher i figured it was worth a shot.

Does your daughter have any cataplexy? What meds is she on? My son is on Provigil 200 mg 2x day and Prozac 40 mg for cataplexy. I am seriously thinking he needs to try xyrem and i am going to talk to his Dr on Monday about it. He is on the Cross Country team but misses about half of it. I can't stand feeling like I am watching the good things of high school pass him by...

#3 merrymom1013

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Posted 15 September 2011 - 06:50 PM

Don't allow the school "evaluation" to be the only information that gets considered. Narcolepsy is a medical condition- an evaluation of a medical condition requires a medical professional. Can you work with the sleep doctor to prepare a letter for the school to consider? Not just a script with a diagnosis, but a letter explaining how the narcolepsy is impacting her. The letter should suggest the accommodations you think she needs and tell why. For example, if you are seeking a delayed start to classes, say that the narcolepsy negatively impacts her ability to wake up in a timely way. Because of fluctuating levels of alertness she needs extra time on tests. Tie each request for an accommodation to the problem created by the narcolepsy.
Check out Wrightslaw.com for some guidance. A 504 plan is absolutely appropriate. If you are hitting a stuck point, Narcolepsy Network may be able to help you and your doctor advocate for your child.

#4 Easter Sudharta

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Posted 02 March 2012 - 12:56 AM

My daughter was just diagnosed with Narcolepsy and we've set up a 504 with her counselor. None of her teachers or the counselor know what should be on the 504 exactly. So the only thing I knew to ask for was extended time on testing and assignments. With this said, how does she get extended time on the SAT, ACT and AP testing? I've heard that there is paperwork to file which would give her up to 50% more time on these tests due to the Narcolepsy effects. Also, she is a junior in high school and this testing is of great importance at this time as she prepares for college entrance and looking for scholarships. I've also heard that she would be limited to testing to a 2-hour maximum due to the inability to concentrate for a long time. Can anyone help me out with what type of paperwork or forms have to be filed for the time extension on the SAT, ACT and AP testing? Thank you.

#5 merrymom1013

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Posted 04 March 2012 - 09:51 PM

Your guidance counselor should be able to do most of the paperwork for the SAT etc accommodations. Even so, you should be proactive to make this happen. You can go directly to the websites of college board and the other sites & find the information about what is needed.
Because your daughter was just diagnosed & hasn't had accommodations before it's a little trickier and you may need documentation from the sleep specialist. The best thing to do is find out exactly what information they need on the documentation for an appeal (often initial requests for extra time from students with no prior history of accommodations are denied, so just plan ahead.) Give yourself lots of time- it doesn't happen as quickly as the 504 plan can happen. Try & get the doctor to give a reason for limiting the amount of testing in one sitting, otherwise the 50% extra time could stretch her test day to 5 or6 hours. The limited time in one day is a more difficult accommodation than the 50% extra time, so the doctor would need to say that the medication is short acting blah blah blah.
Also keep in mind the rules & guidelines are not exactly the same for SAT & ACT accommodations.
Besides extra time, you might want to look at other things in a 504 plan- preferential scheduling: Are 1st period classes or last period classes difficult? Make that study hall or an elective. You don't want AP Calculus at her least alert time of day. Does she need to spread out scheduling of her midterms & finals?
My daughter's school was unairconditioned & stifling. We put that exams should be in an air conditioned room to help her maintain alertness.
Preferential seating if sitting up front helps her maintain alertness or in the back if she's self conscious about nodding off. The ability to take a break or drink water to remain awake. Extra time to turn in homework if she's falling asleep after school. Copies of notes so she can see if she's missed anything. Listening to text books or lectures on an iPod (while walking or doing something active) helps some people.
If cataplexy is a problem & not well controlled, perhaps a buddy in the hall, or being excused from certain activities. (Not climbing the ropes in gym?)
Flexibility with tardiness or attendance rules if that's a problem. My daughter has found over the years that the medication works well 95% of the time, but other times she just can't wake up & feel alert. Something like a cold can totally wipe her out. Her doctor included in his letter that despite medication & good intentions, there may be some days when she is unable to wake up, so consideration is needed.
With your daughter, think through her school day. Identify the ways & times her symptoms make things difficult & let that guide you in what type of accommodations she needs.

#6 hols8

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Posted 14 August 2012 - 12:06 PM

I too was always highly successful in academics however after I developed narcolepsy in the 6th grade my grades dropped. Thanks to my mom I immediately received a 504 plan and have had one ever since. I was successful in academics and a successful athlete all through high school. I am in my fourth and final year at Belmont University and will graduate on time with a BA degree and a double major in political science and spanish. I'll admit I hate having to have a 504 plan, but IT IS NECESSARY!!! Just because you have a 504 plan does not mean you always have to use the accommodations it includes, the accommodations are for when needed. The big reason for a 504 plan is for documentation!!! This is important anytime you apply for accommodations on a standardized test. I am currently applying for accommodations on the LSAT and the guidelines for the accommodation request include having past medical proof of diagnoses and a current diagnosis, a current medical evaluation, past IEP plans or 504 plans, past accommodations on testing, and much more. I ended up sending in 84 pages of documentation and still didn't get the exact accommodations I asked for and am currently fighting it.
If not for any other reason, she must have a 504 plan for FUTURE PROTECTION! As you stated yourself, if Narcolepsy ever does start affecting her school work, you must already have a plan in place to help her. You do not want her to have to struggle with school while you yourself struggle to get her the accommodations she needs.
504 plans are great because they usually do not limit the student. I am always careful with the wording of my accommodations so that I get every preventative measure I might need and so that it does not come back to haunt me in the future.

Medical documentation from your doctor and a letter from your doctor explaining why your daughter needs accommodations should be enough to get a 504 plan. They should not have to evaluate her. My mom had to fight really hard for my 504 plan, at the time I was still really young and was unaware that the school system was not cooperating. However in high school, even after I had an established 504 plan I had to deal with administrators and a few teachers who thought they could take advantage of my disability. These are the cases in which a 504 plan is crucial.
IT IS ALL ABOUT PROTECTION!!! ALSO ABOUT DOCUMENTATION!!!

I too am academically successful and in the current process of applying for LSAT accommodations, in addition to a current medical evaluation they suggested a psychoeducational evaluation as well. When I went in to meet with the psychiatrist, I was only in there 45 minutes before he told me plainly, "Your disability is not going to be reflected in psychoeducational testing, unless we make you fall asleep during the testing" Which he was willing to do. This psychiatrist clearly understood the need for accommodations on the LSAT but after seeing my academic history, he was honest with me in saying that psychoeducational testing would not reflect my disability. This is because I am not stupid. However, narcolepsy does affect my ability to preform academically. As mentioned before when I developed narcolepsy my grades started dropping due to the fact that I missed much of class and tests due to sleep attacks. However, with the help of a 504 plan I have been able to maintain a great academic status.
My point here is that they cannot base your daughter's need for a 504 plan off of her academic performance. A 504 plan is not only for learning accommodations but also for physical ones such as designating a place to take naps if she needs one throughout the school day.

I am so sorry I did not mean to write this much, but I also just remembered, in my experience, a school is sometimes hesitant to cooperate because they think you don't know any better. When my mother was first applying for the 504 plan when I was in 6th grade, it was obvious that administrators sometimes like to gage how much you know about what you are asking for. They thought my mother was clueless and tried to get her to settle with putting me in special education classes. In other words, they just wanted to tuck me away in the special education program because the principal of my school did not want to deal with having to provide a 504 plan. However, my mother had dealt with such issues in her past. Although she did have to fight for my 504 plan, once the administrators realized she knew what she was talking about they were much more agreeable. For example, in high school our principal tried to punish me for occasionally missing 5-10 minutes of my 1st class of the day. I was only late to my first class occasionally and it was a result of morning sickness caused by my night medication. At this point in my educational career I had already had a 504 plan for at least 4 years. When we reminded the administrators of my 504 plan they still dismissed it and tried to punish me with morning school or saturday school. However, once the principal realized that my mother actually knew what she was talking he immediately backed off.

My point behind that story is MAKE SURE THEY KNOW YOU KNOW WHAT YOU ARE TALKING ABOUT. So many times school systems take advantage of kids and parents who don't know any better. Once the administration knew that we knew what my rights were and were willing to fight for them, they immediately backed off. They could have gotten in serious trouble for trying to ignore a 504 plan. But they get away with it so often that I think they forget there are people out there who are willing to fight to protect themselves.

One more important thing, around your junior or senior year in high school your daughter should be able to register with your state's vocational rehabilitation program. Basically this might allow your daughter to recieve extra money in college. You do not have to worry about them interfering with her education they are only there if she needs them. Once registered, you can possibly receive extra money for college, it makes it easier to get classroom accommodations in college, and after college they provide services to help with job placement. Such as preparation for interviews and such. I don't know if I will need all of these services when I graduate but they have been helpful with providing extra funding for college and protecting my accommodation rights.

#7 novacat

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Posted 26 September 2012 - 08:22 PM

Hi, My 15 year old daughter is in 10th grade. She has Narcolepsy and was diagnosed right after her 15th birthday. She is on two meds a day (one in the morning and one in early afternoon) to work on managing it. She is a highly academic student and strives very hard to get A's in her classes. She is experiencing tiredness every day at school. She tried a nap in the nurses office one day but said it was too strange. When I spoke with the school psych about a 504 plan, at first he dismissed it and said that if her grades started to fall from an A average to a B average, this would NOT be indicative of a problem since she would still be above average. The following week, I called him to say that it isn't about the grades, but it is about the fact that if her grades fell, it would be due to the Narcolepsy and that she does not have equal opportunity as her peers to be able to stay awake and alert in class. He agreed to speak with his supervisor to see how to handle this. He then called me back to say they are going to do an evaluation on her that includes: observing her at various times of the day (without her knowing he is in the room for her), interviewing last year's last trimesters teachers and this year's current trimester teachers, and then interviewing her at the end to see how she feels Narcolepsy is affecting her. He would welcome information from her dad and I, but that wouldn't be a part of the deciding factor. He, the nurse, counselor and possibly the administrator will make the decision to decide "if Narcolpesy is affecting her to a detrimental level when compared to peers in the daily function of learning." If they feel it is, we can write up a 504; if they do not feel it is, she will not get a 504.

I would love feedback from anyone who has been through this. My daughter is such a high achiever that she will about go over the edge to get through school to achieve an A. I feel like since she is on 2 meds a day and she gets tired by 9:00 am and struggles through and then it all starts again in the afternoon that she is entitled to a 504 with modifications, if she wants to use them. Am I wrong? Are there other ways or things to point out to this team that will help? I do plan to make sure they know it is more than just needing a 15 minute nap that will be a cure all. I am not clear if they understand that or not. I do plan to talk with her doctor, as well, at her next appointment. I am working very hard at being kind and professional with this person and the team, and I want to work as a team with the school. Please, if anyone has any advice, let me know. Thanks! Micki


Hi! I am very much like your daughter. In high school I was straight A's right up until the narcolepsy started. My grades slowly drooped and by senior year b's were a common occurrence, sometimes c's; I was too tired to care. Those grades were coming when I literally gave up everything else: sports, most of my social life, and I just did school because it was all I could manage. I joke telling people 'i just thought i had a bad case of serioritis' but it was never really a matter of me giving up on school.
I was not diagnosed until the end of my high school career, and at that point I was already accepted into college, but I can tell you that grades matter a lot when it comes to scholarships. My parents reassured me that my grades were still good, but now that I am medicated correctly thanks to my awesome sleep doctor, I can tell you that those grades and the classes I took would have been much, much higher. College is still a struggle, hallmates are noisy even though I am in a single room. As long as I am on a good sleep schedule and taking my medicine I can get through the day and get all of my work done and I feel like my old pre narcolepsy self almost. Its very frustrating as well because I can not tell any of my peers that I have narcolepsy because no one can know that I am taking stimulants; my doctor told me that he has had patients who have had their medication stolen. Really, narcolepsy has a huge impact on your life as a whole. who ever says other wise obviously doesnt have narcolepsy or know any one who does. I am a lucky one that I found a good regimen, but I still have some really rough days. I am very proud to say though that I aced my first college chemistry exam, which is no small feat! What ever your daughter decides to do, make sure she goes somewhere what will really take care of her! My school has the most wonderful disability office and outside of that I have such a great support system available to me through my academic advisor and health center.

#8 drago

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Posted 15 October 2012 - 10:03 AM

She is experiencing tiredness every day at school. She tried a nap in the nurses office one day but said it was too strange. When I spoke with the school psych about a 504 plan, at first he dismissed it and said that if her grades started to fall from an A average to a B average, this would NOT be indicative of a problem since she would still be above average.

...He then called me back to say they are going to do an evaluation on her that includes: observing her at various times of the day (without her knowing he is in the room for her), interviewing last year's last trimesters teachers and this year's current trimester teachers, and then interviewing her at the end to see how she feels Narcolepsy is affecting her.


I think that this particular mindset is a BIG problem! Obviously, if you called hysterical because your daughter's grades dropped from A's to B's and you wanted her committed, this would be the response I would expect -- the counselor reminding you your daughter is still above average and your worry was out of place, maybe even out of line. HOWEVER, what really happened was that you called an reported a MEDICAL condition that adversely affects your daughter and her ability to do her school work.

Admittedly, I am particularly annoyed by this mindset because in third and fourth grade, my grades dropped. Significantly. I remained strong in math, but everything else dropped. No one cared, because my grades were still above average. Why did my grades drop? I needed glasses -- BADLY! When I finally got to the eye doctor, they asked why me (and my parents) why they waited 'such a long time' to get me to the doctors. No one had noticed.

This same problem repeated with my dyslexia. My grades dropped when the reading increased in sixth grade, etc. The only reason I was able to overcome it was that one person --- ONE teacher --- gave me some "active reading" tips that enabled me to beat the dyslexia because I asked for some help. If I hadn't, who knows what would've happened.

Anyway, the point I'm trying to make is that all students should be allowed to excel, and when the limit on their ability to excel is medical/physical or social, there should be something that re-balances that limitation. Sometimes it's glasses, sometimes it's longer testing time, sometimes it's a 504 plan. People with disabilities shouldn't settle for being "average" because of their disability -- especially not when the reason they're settling is because of a world designed for people without disabilities. I mean, would you want your kid to not take an AP or honors course because it was on the second floor and there was no way for someone in a wheel chair to get to the second floor? Of course not.

Unfortunately, you need to be very ACTIVE in this -- you can't let others dictate your rights (or your child's rights) because of their perceptions. I have had more than one (non-neurological) doctor tell me I'm the only patient they've ever had that's had narcolepsy. A lot of non-specialist doctors don't know enough about the disorder, let alone non-medical folk.

He would welcome information from her dad and I, but that wouldn't be a part of the deciding factor. He, the nurse, counselor and possibly the administrator will make the decision to decide "if Narcolpesy is affecting her to a detrimental level when compared to peers in the daily function of learning." If they feel it is, we can write up a 504; if they do not feel it is, she will not get a 504.


Like I said before, don't let them dictate to you whether 504 is necessary. The biggest issue I have with narcolepsy is that it is INTERMITTENT. A lot of people fail to understand that -- sometimes I seem perfectly fine (and I feel OK and do well) and at other times I have extreme fatigue/EDS. A doctor -- a specialist -- needs to have the biggest slice of the input.

What if they're review fails to capture your daughter when she's begin affected? Again, the disorder is intermittent... And what about the natural acceleration of education? Junior year was more difficult than sophomore year, etc. And usually the quarters and semesters accelerate difficulty, too. Just because you can't perceive a severe issue right now doesn't mean she won't hit it down the road -- and waiting for a 504 plan when you need help can be very frustrating.

The skinny: NARCOLEPSY IS A DISABILITY, as defined by the Americans with Disabilities act. (It impairs at least one major life function -- sleeping, therefore your daughter qualifies as a person with disability.) So she should get a 504 plan. As they say, period amen.

I would love feedback from anyone who has been through this. My daughter is such a high achiever that she will about go over the edge to get through school to achieve an A. I feel like since she is on 2 meds a day and she gets tired by 9:00 am and struggles through and then it all starts again in the afternoon that she is entitled to a 504 with modifications, if she wants to use them.


I think the word "entitled" is wrong -- she legally has the right to a 504. 504 is not special treatment, this is leveling the playing field, so to speak.

Are there other ways or things to point out to this team that will help? I do plan to make sure they know it is more than just needing a 15 minute nap that will be a cure all. I am not clear if they understand that or not. I do plan to talk with her doctor, as well, at her next appointment. I am working very hard at being kind and professional with this person and the team, and I want to work as a team with the school. Please, if anyone has any advice, let me know.


Being polite and professional is a good thing, but be sure to know your rights and your child's rights

Sometimes making people understand narcolepsy is impossible -- they just don't "GET" it. They might never get it. But what's important to remember its that their understanding is not essential -- if they try to rationalize that your daughter's disorder is not "bad enough" to get a 504, be sure to correct them -- according to the ADA, she has a disability. If they can't understand her disability, then they need to accept the orders of someone who does -- a specialist (her neurologist/specialist treating her narcolepsy).

The other important thing is that they need to know that narcolepsy is a disorder (a collection of symptoms), not a disease. One individual with narcolepsy could have a very effective treatment plan, while another person may not respond well to any of the current treatments. This is why the doctor's recommendation is so important to a 504 plan -- her doctor knows her symptoms, her disorder, her needs.

I guess my advice is... polite and professional is good, but if it comes down to it, being RIGHT is better. Bring a wing-man (good cop/bad cop) if you're not feeling particularly assertive.

drago