Children with rare or undiagnosed conditions – such as narcolepsy – are members of neighborhood schools across the country. School can, and should, be a great place for everyone, including those with unique medical conditions, to access their education.
Narcolepsy can affect children differently, and children who have it vary greatly in intelligence, behavior, medical issues, and educational needs. In this resource, we offer tips and strategies for children who have narcolepsy. We will also describe specialized educational supports and ways to work with your child’s school to ensure a collaborative approach is created to ensure your child has access to their education.
Meeting a Child’s Individual Needs
When a child has a rare disease, the road to a diagnosis can be long and complex. Some children with narcolepsy may never receive a diagnosis of narcolepsy. Instead, they may have a general diagnosis, or be labeled as lazy, unmotivated, or staying up too late at home. A medical diagnosis may help open some doors for educational services by explaining the student’s constellation of symptoms and behaviors are neurological and not intentional in nature. That being said, if a student is not yet diagnosed, but is unable to access their education, caregivers should be proactive by reaching out to the school for accommodations or modifications to ensure the student can access their education.
Medical Information That May Prove Helpful for Effective Advocacy
A sleep log is a tool for evaluating aspects of an individual’s sleep habits, finding ways to improve the quality and quantity of sleep a person gets, or investigating the effectiveness of a new or changed treatment. It is important to start the sleep log a few weeks before starting any new or changed medication or therapy, so that you become accustomed to the process and establish a base line for comparison. Over time, the individual may begin to see patterns emerge. A sleep log is one of the best ways to provide the accurate and objective information a doctor or school needs to know to make important decisions about treatment and educational planning.
You can print copies of a sleep log from learnaboutnarcolepsy.org or use a notebook to record the most common and useful data:
- Sleep and wake times, naps, triggers, and duration of cataplectic events
- Medication including prescription, over the counter, homeopathic and herbal preparations, times, and dosages
Epworth Sleepiness Scale (ESS) & Swiss Narcolepsy Scale (SNS)
The Epworth Sleepiness Scale (ESS) is a tool to help determine how likely you are to fall asleep in everyday situations. The ESS helps measure the degree of daytime sleepiness that you experience and can provide valuable information when advocating for your child for educational accommodations or modifications.
The Swiss Narcolepsy Scale (SNS) is a tool used to measure a person’s symptoms and determine if they have narcolepsy with cataplexy. The SNS is made up of five brief questions:
- How often are you unable to fall asleep?
- How often do you feel bad or not well rested in the morning?
- How often do you take a nap during the day?
- How often have you experienced weak knees/buckling of the knees during emotions like happiness or anger?
- How often have you experienced sagging of the jaw during emotions like happiness or anger?
Letter(s) from your child’s doctor(s) that contain the following information:
- Name and date of birth of child
- Explanation of the diagnosis
- Explain how the child is specifically impacted
ii. Inability to stay awake?
iii. Difficulty focusing, concentrating, paying attention, taking notes?
iv. Inability to wake up in the morning and make it to school on time?
v. If the child has cataplexy, explain cataplexy and how it impacts the child.
- What accommodations/modifications are recommended to level the playing field with neuro-typical students?
- List doctor’s credentials (i.e., specialty, special training, any board certifications, years in practice)
Accommodations or modifications must be specific to address the unique needs of your child. You should speak with your child, school staff, and providers to determine what may work for your child.
Here are some ideas to consider:
- A safe, private place to take a short nap while at school
- Ability to go to the nurse as needed
- Extended time on tests and assignments
- Testing in private area so student can get up and walk around or stand
- Preferential seating
- Reduced homework or classwork
- Notes and study outlines for every class
- Modified or flexible class schedules (important classes scheduled when your child is most alert)
- Priority scheduling
- No penalty for lateness to school
- Ability to leave classroom and walk around if sleep attack approaching
- Snack/drink in classroom
- Accommodations on standardized testing (i.e., testing over several days; extended time; ability to take breaks)