REM Runner’s Note: Diana is the mother of Danielle Brooks – an amazing, artistic and athletic young woman with narcolepsy who created www.succeedingwithnarcolepsy.com. In this guest post, Diana offers insightful tips for navigating the school accommodations process and helping your student with narcolepsy succeed.
Diana’s Guest Post:
1. You must be an advocate for your child. No one will do that better than you. Realize that Narcolepsy affects many aspects of learning. Make sure you tell everyone that will be in contact with your child (ie. Teachers, administrators) how your child may be affected while in the classroom.
2. Before school starts, meet with the administration to define the needs for your child. Explain in detail what a day is like for your child. What makes your child’s day more productive? Naps, shortened school schedule, etc. If this is a new illness, explain to them that it may take some changing of the 504 as time progresses. Include your child in this process. They will need to become advocates for themselves when they are in college. If they are included in these meetings they will learn what works and what doesn’t. Educate your high school student about their condition as well. It’s important that they believe the accommodations in the 504 plan will help them succeed.
Accommodations may include some of the following:
a. Seat student near the teacher.
b. Allow extra time for exams, ie: time and a half.
c. All paper pencil tests (computer tests may cause sleepiness, due to dark room and quiet stillness).
d. Limit test time in one day (Decide on a limit – our limit is 3 hours).
e. Movement – Allow legitimate movement in class.
f. Standing – May stand during class – student will stand out of other students sight.
- During a test or quiz the student may want to stand at a podium.
- Go to another room to finish a test or a quiz if everyone else has completed theirs.
- Come in early before school to start a test so the student can finish it during class. After school a narcolepsy student may be too tired to concentrate.
g. Reduce school day. Plan classes hour by hour.
- Maybe hardest classes first when the student is most awake. Example schedule: Honors Physics, Pre-Cal, Honors American Literature, Honors American History, Yearbook. Depart school at 12:50. Takes Spanish 2B online at home.
- Figure out if there are classes that may be dropped and not required for graduation. (ie. A school may require 28 hours, but the state requires 24 hours for graduation, the school may allow the student to not take the extra 4 hours but still graduate without penalty)
h. Online Summer Classes – School may offer online classes in the summer to off set a class during the year. You may have to pay for these classes but check with your school.
i. Make a Plan – Sit down and figure out what your child needs in 9th,10th, 11th and 12th grade. What are the students plans after high school? A plan is imperative!! You may have to deviate a bit but at least you have a map to go by.
j. Dual enrollment the student’s senior year (taking some college courses during high school). It may offer a more challenging schedule academically but allow the student a more flexible schedule and ability to stay on target for graduation and lightened the academic class load in college.
k. Make-Up Testing – If student is unable to take medication allow that student to makeup a test on a different day.
3. After you are all in agreement with the 504 Accommodations, you will be asked to sign. This 504 should be reviewed every semester until you, your student and the school is comfortable, then once an academic year. Schedule a meeting with the teachers and administrator that are in charge of the 504. At this meeting you and your student will need to explain in detail what it is like to have Narcolepsy and Cataplexy. If your student changes teachers each semester or each block, you will need to meet with them before the semester or block schedule begins.
Someone in the room will probably say, “I have that too.” Look at them straight in the eye and say, “I doubt it”. Tell them the story about being up for 48 hours straight and then starting their day, sitting in a classroom, taking notes, taking a test, the fogginess that is always there. Tell them that the student with N/C does not have the orexin to keep them awake. Those cells are dead. Emphasize the struggles. Give them the shock effect. Don’t be afraid. These students tend to look and act perfectly normal. They are normal, they just have Narcolepsy. Hand out information. Get information from your doctor to support your child’s need. Have your doctor write up a description about what happens to a brain with Narcolepsy. This documentation will help support your child’s case at school and beyond.
We have had a pretty positive experience with our school but we came into this prepared for battle. For us this all began my daughter’s freshman year in high school. A brand new school for her and us. We knew no one. We did our homework, but there was very little available at the time.
My husband read medical studies and I worked on her diet, medication and schedule. We talked every day about how she felt, when she was most tired, what foods triggered sleepiness and cataplexy, what helped keep her awake. We took notes, took videos of her cataplexy (for the doctors eyes only) and shared everything with the doctor. It was 2 years of extreme detailing but for her she has come out stronger and ready to go everyday. She is learning her limits but she is living a full life. She may not go to sleep overs or camp but she is participating in life.
We had to make some big changes, her diet for one, a new swim coach who was willing to work with her needs, a shortened day at school, but she realizes she can participate in most everything it just may have a stipulation. We hope this helps give you some guidance in how to help your student succeed in school. Each student’s needs vary, what doesn’t vary is that working together, they can be successful.