Setting Your Child Up for Success: Initial Conversations With Their School and Teachers

Starting school with a new narcolepsy diagnosis can feel like a big hurdle for both you and your child. To ensure a smooth transition and set your child up for a successful school year, there are certain steps you can take. The key is to have open conversations and provide clear information to your child’s school and teachers before classes begin.

Initial conversations: Who to talk to and when

The best time to begin these discussions is as soon as you receive the diagnosis, well before the school year starts, if possible. This gives the school ample time to prepare and make any necessary accommodations.^1,2

Your initial contacts can include:^2,3

• The school principal – The principal is the head administrator and can help coordinate efforts across the school. They can also ensure that all staff members are aware of your child's needs.
• The school nurse – The nurse will be your primary contact for medical needs during the school day. They can give medicines, monitor your child's health, and provide a safe space for planned naps.
• The special education coordinator – Even though narcolepsy is not a learning disability, it can impact a child's ability to learn. Narcolepsy is considered a disability under the Americans with Disabilities Act. The special education coordinator can help you understand your child's rights and establish a 504 Plan or Individualized Education Program (IEP).

A 504 Plan outlines accommodations to ensure your child has equal access to education. An IEP is for children who require specialized instruction and related services. Most children with narcolepsy will be covered by a 504 Plan.^3,4

When you contact them, clearly state that you would like to schedule a meeting to discuss your child's recent narcolepsy diagnosis and how the school can best support them.

Essential documents to have ready

Being prepared with the right documents will make your meetings more productive. Consider gathering these items before you meet with school staff:⁵

• Official diagnosis letter – A letter from your child's neurologist or sleep specialist confirming the narcolepsy diagnosis. This letter should also include a brief explanation of narcolepsy and its potential impact on a child in a school setting.
• Medication information – A list of any medicines your child is taking, including dosage, frequency, and potential side effects.
• Doctor's recommendations – Any specific recommendations from your child's doctor regarding sleep schedules, activity levels, or accommodations needed during the school day.
• Past medical records – While not always necessary for the school, having a summary of relevant medical history can be helpful if questions come up.

The power of a "Narcolepsy Action Plan"

A Narcolepsy Action Plan is a simple, concise document that you can create and share with all of your child's teachers and other school staff. This plan empowers teachers to respond effectively and consistently. Keep it to 1 page if possible.⁵

Here are some key elements to consider including:^1,5

• Child's name and photo – Make it easy to identify your child.
• Key symptoms – Briefly list how narcolepsy typically affects your child. For example, "sudden sleep attacks," "cataplexy (sudden muscle weakness triggered by strong emotions)," or "automatic behaviors (performing tasks without conscious awareness)."
• Triggers – Identify common triggers for your child's symptoms. Examples include boredom, long periods of sitting still, laughter or excitement (for cataplexy), or stress.
• Immediate responses – Provide clear instructions on what teachers should do when symptoms occur. For example:
• "If [Child's Name] falls asleep, gently wake them by saying their name. Do not startle them."
• "Allow [Child's Name] to go to the nurse's office for a planned nap (specify duration, e.g., 20 to 30 minutes)."
• "If [Child's Name] experiences cataplexy, ensure they are in a safe position and wait for it to pass. Do not try to move them."
• "Remind [Child's Name] to move around if they appear drowsy."
• Emergency contacts – Your phone number and other emergency contacts.
• Doctor's contact information – For questions or emergencies.

Make several copies of this plan and distribute them during your initial meeting. Ask the principal to ensure it is shared with all of your child's teachers, substitute teachers, and any other staff who interact regularly with your child.

Classroom setup: Tips for parents

Discussing specific classroom accommodations with teachers can significantly improve your child's comfort and ability to learn.^1,5

• Seating arrangements – Suggest seating your child near the front of the classroom to minimize distractions and allow the teacher to easily observe them. Proximity to an exit might also be helpful for quick trips to the nurse.
• Access to water – Staying hydrated can help combat fatigue. Ask if your child can have a water bottle at their desk.
• Movement breaks – Discuss the possibility of scheduled movement breaks or allowing your child to stand up and stretch if they feel drowsy.
• Quiet spaces – Identify a quiet space in the classroom or school where your child can go for a brief rest if needed, even if it is not a full nap.