4 replies to this topic

[Kathy]

New to board

16 year old son has been dealing with narcolepsy for about a year now. We have been working with school but this year they have not been very helpful. So we are going to have a meeting. Not sure if we should ask for an IEP or 504. He has attention, memory, falling asleep in class etc. Doctor said that 504 is pretty much the same as an IEP.

Have any of you had these types of meetings with school.

I did print out the brochure and plan on giving it to them. Any help or suggestions would be appreciated.

K

[merrymom1013]

I've been doing these meetings forever- on the school side of the table for over 20 years & as a parent of a daughter with narcolepsy for 7.
The difference may be how much support your son needs. For a 504, you need to have a disabling condition that is impacting a major life function, and as a result require reasonable accommodations. In your son's case the ability function in school, attend & learn. Foe an IEP, you need to also require special education services to make progress in school. The benefit of an IEP is you have more input & more control than with a 504. A 504 is easier to get. Both are federal mandates.
Since the school hasn't been helpful (& probably has little understanding of narcolepsy), provide the school with documentation from his specialist of the diagnosis, how the condition impacts his ability to function in school and what accommodations are needed. A script that says he has narcolepsy is not enough. www.wrightslaw.com is a website that can explain the differences, your rights, etc.
More important than the 504 vs. IEP, is figuring out what accommodations & supports your son wants/needs. Does he need a place & time to nap at school? A copy of notes in case he zones out & misses something? A water bottle, permission to stand in the back of the room, air conditioning to help him stay alert? Extra time to finish tests? Breaks during exams? A delayed start time? A shortened day? Brainstorm with him & make a list. Take it to the meeting. Better yet, get them included in the doctor's letter.
Go prepared and stay positive. When they tell you they can or can't do something, ask why & repeat their answers back to them (politely of course). "So you are saying that you can't offer a break in the middle of the day because there is no place for him to go?" Take notes. Ask questions, including what the next step is. "After you get the updated doctor letter, you will schedule the 504 plan meeting within 2 weeks?" If they refuse, ask what the district's appeal process is.
If you hit a roadblock, call the NN office and ask for help from the pediatric advisory board- someone can call you, or email you & offer support. Good luck-Keep us posted.

[hyperlexic]

Here is a suggested IEP for narcolepsy. Make sure that you get the IEP, with it you can make sure your son gets what he needs. If you need more information on why each is necessary, email me at hyperlexiclinks@gmail.com . I'd be happy to help advocate for him if you need a narcoleptic to explain why this is imperative for his educational wellbeing.
I hope this helps him in school.

Individualized Education Plan (IEP) for Narcolepsy

Extra time for tests and classwork

Two copies of each textbook, one for home and one for school

The right to go to a comfortable place to get a nap when the student requests it

A copy of the lesson plan for the student to look over

Extra time to complete homework.

No penalty for absences or being tardy

Access to a computer to type notes, homework, classwork, and tests on

Access to the elevator to reduce dangers of falling down stairs

Teacher will write homework assignments in the agenda book for the student

No penalty for late books.

Assignments will be emailed to the student

Student may use a sound recorder in class

[sleepzone]

New to board

16 year old son has been dealing with narcolepsy for about a year now. We have been working with school but this year they have not been very helpful. So we are going to have a meeting. Not sure if we should ask for an IEP or 504. He has attention, memory, falling asleep in class etc. Doctor said that 504 is pretty much the same as an IEP.

Have any of you had these types of meetings with school.

I did print out the brochure and plan on giving it to them. Any help or suggestions would be appreciated.

K

[sleepzone]

New to board

16 year old son has been dealing with narcolepsy for about a year now. We have been working with school but this year they have not been very helpful. So we are going to have a meeting. Not sure if we should ask for an IEP or 504. He has attention, memory, falling asleep in class etc. Doctor said that 504 is pretty much the same as an IEP.

Have any of you had these types of meetings with school.

I did print out the brochure and plan on giving it to them. Any help or suggestions would be appreciated.

K

Yes, IEP for sure! I see this post is several months old, let us know how it went. An IEP will give you a lot of power to see your son gets the things he needs.