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Middle School/Elemenatry Education Plans


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#1 ammey

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Posted 25 February 2008 - 10:24 PM

Hi, my name is Ammey and my son Kaine is 11 yrs old diagnosed wih Narcolepsy over a year ago. He is on Provigil right now.

He already has an IEP at school because of an Autism Spetrum Disorder, and Sensory Modulation Disorder. We recenlty moved, so he is at a new school. When I had my first IEP meeting with them, they flat out rolled their eyes when I explained the Dr's orders to manage his Narcolepsy. Which is a second dose of meds before noon, and a scheduled nap, 15-60 minutes around mid day.

They refuse to comply with the nap, only allowing Kaine a few minutes to rest his head on his desk during class if he needs to. (How can he rest?) They claim the nurses office harbors germs, which they do not want him exposed to, so there is no place for him to lay down.

So, when he comes home, even in the car, he falls apart. He unravles quicker than a ball of yarn. He cannot tolerate anything, and frequently, even on the Provigil, he is sleeping instead of eating dinner or doing homework. They also made comments trying to discount his diagnosis because they have never seen him have a sleep attack, and feel his sleep attacks outside of school do not warrant a nap accomodation. Mind you, he fell asleep at school often, once for an entire school day, at his last school, before the Provigil!

I tried to tell them Narcolepsy does not always look like the stereotypical sleep attacks, but on better days or meds, it can just be chronic excessive sleepiness that affects attention, mood and memory. They seemed pretty set to hold onto their ignorance about Narcolepsy.

I am speaking with a Sp Ed advocate re: whether they can pick and choose which Drs orders to comply with, as they see fit. Medication is not all the treatment involved w/ Narcolepsy. My son has seen 3 pediatric sleep specialists who all ordered the same treatment regimen for him at school.

Do any of your children, in Middle School, or Elementary school have a nap accommodation, and is it truly necessary?

Any advice?

#2 janetj

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Posted 26 February 2008 - 03:54 PM

Hi Ammey, I have found you on here!
I am JJ who was on your blog.
I cannot help but I hope someone comes along who can.
I have contacted the NN and had great advice from them in the past.
If you want to chat via email I am sure there must be some way of doing it. (I am not very good on computers!)
Janet

#3 ammey

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Posted 26 February 2008 - 05:30 PM

Hi there! Yes, I am enjoying the section Children with Narcolepsy on this forum. This forum is great! I am so glad I searched the web and found this site. Nice to talk to you again!

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#4 Ronda

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Posted 29 February 2008 - 11:38 PM

Hi Ammey,
This is my first time here. I teach in an alternative setting with many special ed students. In answer to your question about whether teachers can "choose" doctors to listen to or reports to believe, actually, if they disagree with your doctor, they may be able to ask for a second opinion and pay for it themselves. No matter what, though, they are legally to provide the least restrictive environment which meets your child's needs. It's a good idea to work with an advocate. State laws and district policy vary, but No Child Left Behind is a federal mandate.

#5 ammey

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Posted 01 March 2008 - 11:17 AM

Thank you Ronda, I am so thankful to say that this issue has been resolved now. I think someone spoke to the principal, or she realized on her own that she could not refuse the Drs orders. Now he is all set up to take his nap at school, and I know it will help him a lot.

Nice to meet you! What grades do you work with?

#6 momthing

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Posted 29 August 2008 - 11:28 PM

Hi,
I am the mother of an 8 year old who was diagnosed with narcolepsy after sleeping through Kndgn twice. Last year in 1st grade his school complied with the Doctors orders for a mid-day nap at school. They were willing to provide a dark office for him to nap in. He received a 504 that stated this as a requirement. Today when I brought in his bedding for the start of a new school year they said that they had no room and told me I would have to come and pick him up from school each day, drive him home for a nap, and return him back to finish the day. This would add at least and extra 30 minutes of missed school time and I'm still not sure I can even work it out logistically. Does anyone out there know if they are required to live up to the conditions of his 504 and provide him with a place to nap.

#7 merrymom1013

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Posted 01 September 2008 - 01:17 PM

QUOTE (momthing @ Aug 30 2008, 04:28 AM) <{POST_SNAPBACK}>
Does anyone out there know if they are required to live up to the conditions of his 504 and provide him with a place to nap.

I'll give you my ideas as someone who has been on both sides of the table. They have to provide accomodations to try & level the playing field for him. So if they are rejecting the nap, what other strategy are they offering. In this case, not a workable one. He has the right to go to school & their plan might work IF you were in agreement & lived right across from the school so he wouldn't miss even more education time due to traveling back & forth. The time & cost to you also kind of goes against the free part of a free and appropriate public education.
You might want to check out wrightslaw.com or a similar source for some tips. I would start written documentation- send them a letter: " I understand you are unwilling to provide my son with the nap that his doctor has documented as a necessary accomodation for his medical condition. I am unable to come to school & take him home and back daily for a nap. This is not an acceptable option in terms of logisitics or instructional time., etc" Note that the lack of a plan created an emergency situation in terms of his ability to start the school year, and ask for a meeting to develop a plan that meets his needs. I would send the letter to the school 504 person & cc the principal or supervisor.
Then you have set a scenario to officially meet & amicably resolve the issue, but started the necessary documentaion if you need to take things to the next level. Also, if possible, consider communicating about this stuff by email instead of phone so you can verify what they've told you.
With a 504, you don't have quite as much input & as many rights as if your child had an IEP, but you do have similar rights. There is always an appeal process beyond your local district (in my state it is the same as going due process over an IEP issue) & the option of filing a complaint with the state dept of education & federal gov't for their violating 504. Your case is helped because the school evidently already agreed that the nap was a reasonable accomodation last year. Lot's of times, things like this get resolved easily when they realize you are willing to make an issue of this. Sometimes someone just makes a decision like this one without thinking through their legal obligations, so if you make your original letter & request nice but firm they might not get too defensive. In the meantime, be checking out your options in terms of taking it to the next step.
A whole other direction might also be talking to his doctor- is there a way of adjusting his meds so he can get through the whole school day & nap when he gets home. Good luck- hope it's a good school year.
Sue

#8 momthing

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Posted 08 September 2008 - 10:49 PM

QUOTE (momthing @ Aug 30 2008, 05:28 AM) <{POST_SNAPBACK}>
Hi,
I am the mother of an 8 year old who was diagnosed with narcolepsy after sleeping through Kndgn twice. Last year in 1st grade his school complied with the Doctors orders for a mid-day nap at school. They were willing to provide a dark office for him to nap in. He received a 504 that stated this as a requirement. Today when I brought in his bedding for the start of a new school year they said that they had no room and told me I would have to come and pick him up from school each day, drive him home for a nap, and return him back to finish the day. This would add at least and extra 30 minutes of missed school time and I'm still not sure I can even work it out logistically. Does anyone out there know if they are required to live up to the conditions of his 504 and provide him with a place to nap.


#9 momthing

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Posted 09 September 2008 - 12:38 AM

Thanks so much for the advice. My husband and I sat down and wrote a friendly but firm letter. I dropped it off at the school the next morning and by the time I arrived mid-day to give my son his medication they had completely turned around. I think it was pretty much as you thought. Someone had made a decision without thinking through the legal ramifications. When they realized that I wasn't just going to let it go they provided him with the same place to sleep he had last year. The same one that was no longer available. Go figure.

Thanks again. I'm sorry I haven't thanked you sooner. I have four other children who require various accomidations for a variety of disabilities and the 1st week of school was chaotic. Kim



#10 merrymom1013

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Posted 10 September 2008 - 05:54 AM

[quote name='momthing' date='Sep 9 2008, 06:38 AM' post='5051']
When they realized that I wasn't just going to let it go they provided him with the same place to sleep he had last year. The same one that was no longer available. Go figure.


Great news Kim. Wow, with 4 other kids I'm sure the beginning of school is very crazy. I'm so glad things worked out easily. Let's hope all of our kids have a successful year. BTW, I have some scheduling advice from a friend who's son required naps throughout his schooling due to a different medical issue. In high school, he would always be scheduled for a study hall right after lunch. He could sleep through lunch & study hall if needed & it is a good way to give him the energy to make it through the afternoon. My daughter doesn't need a nap, but she is pretty sleepy by the time she gets home.
Sue

#11 momthing

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Posted 10 September 2008 - 11:27 AM

Thanks once again for the advice for the future. I have felt so at a loss and sad since his diagnosis. It has been wonderful to find this online community and a place to throw out ones concerns. Kim