School and Narcolepsy: Tips for Parents of Young Students

Having a young child diagnosed with narcolepsy can be overwhelming, particularly when faced with managing narcolepsy and school. Fortunately, there are ways to help make the process feel possible. Here are some tips to help you and your child successfully navigate life as a student with narcolepsy.

Communication is key

Be open and upfront with your child’s teachers and school administrators. Before a new school year begins, schedule a time to meet individually with each of their teachers to discuss your child’s diagnosis. Provide them with literature about narcolepsy. Take time to explain what the body cues and symptoms might look like. And, share with them how they can best call your child back to focus without embarrassing them in front of their peers.^1,2

This would also be a good opportunity to go over any school accommodations your child needs and prepare the expectations for all parties so everyone starts the school year on the same page.^1,2

Special education plans

There are 2 special education plans available for students who need classroom accommodations for learning: a 504 plan and an Individualized Education Program (IEP).^1,3

A 504 plan, most commonly used for those with narcolepsy, is a plan for managing a student’s learning disability within the general classroom setting. The plan for addressing how to manage a student’s disability is developed with the parents, school principal, and teacher(s). Each state has slightly different rules and guidelines for the 504, so it is important to become familiar with your state's and school district’s process for establishing a 504 plan.³

An IEP is a special education plan for students with a disability in 1 of 13 specific categories. It is usually an accommodation where the student is taken from the general classroom to have specialized instruction in a separate classroom.³

Both plans are reviewed and, if necessary, updated annually. Both plans require an evaluation to formally qualify for classroom accommodations. A 504 plan can carry over into post-secondary education, but an IEP ends with high school graduation.^1-3

What do accommodations look like?

A school accommodation will look slightly different for each student, as no two students’ needs are exactly the same. A student may also need more accommodations when first diagnosed than after having lived with and having learned how to manage their narcolepsy after a year or two. Some examples of accommodations for students with narcolepsy include:^1,2,4,5

• A flexible school schedule
• A seat at the back of the classroom and permission to stand up or move during class
• A designated place and time (such as a nurse’s office after lunch) to take a nap
• The option to color or draw during class, to increase attention
• Additional time for completing tasks and flexible homework deadlines
• The use of audiobooks

Staying alert

One of the most challenging aspects of narcolepsy is staying alert and engaged when feeling an overwhelming need to sleep or zone out. There are ways to help keep your child alert when in class or doing homework.^1,5

Exercise

Exercise is one of the best ways for people with narcolepsy to stay alert. If approved as part of your child’s education accommodations, encourage your child to stand up to listen or walk around the back of the classroom to keep from feeling sleepy. This can help them stay engaged.^1,5

When studying or doing homework, get them to take a 15 to 30 minute break and go for a walk, run, bike ride, or stretch. This can help reengage their brain and wake up their body. This may vary depending upon whether these activities trigger cataplexy. Each child is different.^1,5

Naps

Napping proves to be the most beneficial school accommodation for young children with narcolepsy. Taking a short nap (30 minutes or less) after school and/or during the school day can help recharge a child’s energy and give them renewed focus.^1,5

Consistent sleep

Getting enough sleep is very important for those with narcolepsy. Maintaining a consistent bedtime and waking time, even on weekends, can help kids with narcolepsy feel most alert. It also helps the body to fall asleep and wake more easily. Part of getting enough sleep is being selective about your child’s after-school activities. Pick 1 or 2 activities that your child really loves, but make sure they do not interfere with your child’s ability to get enough rest.^1,5

Medicines

As part of your child’s treatment plan, their doctor may prescribe certain medicines to help them focus and perform their best at school. It may take time to find the right dosage and the best times for medicine and school work. Given time, by paying attention to your child’s patterns and communicating with their doctor, you should be able to find the best methods to successfully navigate school with narcolepsy.^1,5

Reviewed by: HU Medical Review Board | Last reviewed: August 2024