🌅Morning routines
Waking up may require far more time than people realize
Morning routines can be especially difficult for children with narcolepsy. Lucas is usually first woken at 6:00 a.m. and may not get out of bed until about 7:15—even though his bus arrives at 7:35. More recently, some mornings have resulted in arriving one or two hours late.
Lucas occasionally experiences auditory hallucinations while waking. Others may also experience visual hallucinations or sleep paralysis. He can be irritable or angry with the person waking him. We have learned not to treat that first response as a measure of his character or intentions.
Waking a child with narcolepsy is not the same as waking a child who is simply reluctant to get up.
Daytime sleepiness and brain fog
Understanding staff can change the entire school day
When Lucas arrives at school, he may still be tired and experience brain fog. He can take up to two naps at school when needed. Helpful strategies have included a short nap, a quick walk with a buddy, movement breaks and chewing gum when appropriate.
When he gets home, he often sleeps for about two hours and still goes to bed between 9:00 and 10:00 p.m. When he is not mentally stimulated, sleep can arrive very quickly.
“The hardest part about school is people not knowing about it—and staying awake.” — Lucas
“When I am tired, it helps if I go for a quick walk.” — Lucas
Understanding school supports
An IEP and a Medical Plan serve different purposes
📖 Individual Education Plan
Focuses on the tools and accommodations a student needs to succeed academically.
- Assistive technology or an SEA-supported computer
- Voice-to-text and a voice recorder
- Digital notes
- Extra time and extensions
- Alternative ways to demonstrate learning
🩺 Medical Plan
Explains the diagnosis and what staff should do when medical symptoms occur.
- How to respond to a sleep attack
- How to respond to cataplexy
- How to respond to sleep paralysis
- Medication and emergency information
- Instructions for trips, sports and substitute staff
Many children may benefit from both, according to their individual needs and local school-board processes. Lucas currently has an IEP with technology and academic accommodations, but no formal medical plan.
Building your school team
Parents are essential decision-makers
Teachers and support staff bring valuable observations and suggestions. Parents or guardians know their child and remain essential participants in decisions about what is appropriate. Keep the process collaborative, ask questions and request time to consider proposals when needed.
You do not have to attend an IEP meeting alone
Families may ask about bringing someone they trust, such as a partner, family member, friend, advocate, case manager, social worker or healthcare professional, subject to the school's meeting process.
Ask for a staff acknowledgement process
Important documents can be placed in a student record and rarely revisited. Ask the school about a sign-off or acknowledgement sheet confirming that each new teacher or support person has reviewed the student's IEP and Medical Plan. Families can also provide a simple template for discussion.
Having an understanding teacher and administration can make all the difference in a child's success.
What we wish we had known
Paperwork is only the beginning
An accommodation is useful only when the people working with the student understand and consistently apply it. Plans should be reviewed, updated and discussed throughout the year—not filed away and forgotten.
“I wish my friends and teachers knew more about narcolepsy—and more about me.” — Lucas
