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Advice to K-12 Educators of Students with Idiopathic Hypersomnia

The Hypersomnia Foundation invited Jessamine Griewahn-Okita, EdM to create this guide in her capacity as a K-12 classroom teacher, education consultant, and person who has idiopathic hypersomnia (IH) under the oversight of Prof. King. The advice in this guide was summarized from interviews with participants in an online focus group of educators who have IH and derived from standard qualitative research methods.

The term educator is used in this guide to refer to everyone who contributes to a child’s education, which includes classroom teachers, counselors, administrators, school nurses, and more. The Educators’ Perspectives entries summarize the most salient information.

As educators, we often have numerous roles. We are teachers, detectives, advocates, researchers, students, classroom first-responders and more. We are busy and often overwhelmed, and when we have a student who is struggling, it can feel like we don’t have the time, energy, or resources to properly address the challenge. As a teacher and education consultant who has IH, I hope to give you a brief but insightful overview of what idiopathic hypersomnia (IH) is, what it looks like in the classroom, and how to help students with this disorder. From one  overworked educator to another, I hope it helps. By seeking this information, you’ve already begun to help the student.

What is idiopathic hypersomnia?

Idiopathic hypersomnia (IH) is a rarely diagnosed, chronic, neurological disorder.

People with IH are always sleepy, no matter how much sleep they get. This phenomenon is referred to as excessive daytime sleepiness (EDS). Many individuals with IH sleep more than 10 hours per night and still wake up feeling as if they haven’t slept at all. This chronic, unrelenting, severe sleepiness affects cognitive as well as physical functioning for people with IH.  For some individuals, sleepiness levels may fluctuate by hour, day, week, or month. It’s important to remember that a good period of functioning doesn’t negate the validity or severity of symptoms during  bad periods of functioning.   

Common myths include that the child needs to go to bed earlier, needs a more regular schedule, has too much screen time, or needs to eat healthier. These behaviors all fall under sleep hygiene and are of concern to all teachers. While these behaviors do affect sleep, a doctor has already ruled them out and educated the family before diagnosing an individual with IH.

There are no FDA-approved treatments for children with IH at this time, although a single medication (Xywav) is approved for adults with IH. Some students with IH find success with stimulant medications (e.g., Adderall, Concerta, Focalin, Ritalin, Vyvanse, etc.) or narcolepsy medications. Many people with IH (PWIH) have specific sleep schedules that may include earlier bedtimes, later waketimes, and daytime naps.

Educators’ Perspectives

This neurological disorder (idiopathic hypersomnia) requires the same considerations as other medical conditions. This includes always obtaining consent from the family (or the student if 18 or older) before sharing medical information with other teachers.

Be patient. Be kind. You can still hold them to a standard while being compassionate.

– High School Teacher who has IH

How does IH impact learning? What can we do as educators?

As is the case with any student who is struggling, educators want to identify what kinds of learning over-challenge the student and determine how we can help. The symptoms of IH can be categorized into two groups: excessive sleepiness and cognitive symptoms. What follows are common ways these symptoms impact learning in the classroom, as well as classroom strategies you can implement. These are suggestions and will vary by age and subject matter. You know your students and course material best. If you are teaching virtually, there will be some different considerations, but accommodations may still be needed. It is also important to remember that IH is an incredibly varied disorder. Beyond some of the symptoms that most people with IH have in common, there are a number of other symptoms they may experience. Make sure to talk with the student and family to hear firsthand what IH looks like for them. When appropriate, talk with the student, family, and learning specialists to brainstorm more targeted strategies.

Educators’ Perspectives

Students with IH may need accommodations to succeed in school. Be sure to talk with the student and their family to decide which accommodation will be helpful.

When a student is disengaged in class, my gut reaction is to interpret it in one of two ways. It’s either their fault (“They’re not trying hard enough!”) or it’s my fault (“I didn’t make this lesson interesting enough!”). However, with students with IH, it’s no one’s fault. Let that take a weight off your shoulders. You’re not doing anything wrong. Work with the student to fight this battle together.

– Elementary Teacher who has IH

Symptom: Excessive Sleepiness

There is a good chance that a student with IH will fall asleep in your class. You need to talk with the student and family to determine a plan for how to respond when this happens. Some students will want to be discreetly woken up. Others should not be woken up. It is important to discuss this symptom with the student and their family.

Sleepiness can vary from class to class. A student may seem alert and engaged in your colleague’s class but struggle greatly in yours. Don’t take this personally. Symptoms are affected by a number of factors (time of day, quality of sleep, stress, medication, interest in the content, etc.), and this is not necessarily a reflection on your teaching.

Strategies for Managing Excessive Sleepiness

Manifestation

  • Sleepiness

What It Looks Like in Class

  • Falling asleep in class
  • Not completing homework because they are sleeping after school

Classroom Strategies

  • Preferential seating, such as:
    • near the board to promote wakefulness
    • near the door in case they need to leave
    • not in the direct line of sight of other classmates
  • Use of a standing desk
  • Use of fidget items
  • Ability to walk around during class or take a break from class as needed
  • Talk with the student/family to create a plan for what to do if the student falls asleep

Manifestation

  • Trouble waking up

What It Looks Like in Class

  • Tardiness, especially to the first class of the day or the first class after a nap

Classroom Strategies

  • Reconsider tardiness policies and consequence so students are  not punished for the symptoms of their IH disability
  • Be discreet and welcoming when a student enters late
  • Consider extensions and grace periods for tardy assignments
  • Be considerate and understanding with families; they know their students are late and they’re probably running late, too
  • Offer thoughtful course scheduling, such as putting the most demanding or important classes during times of high wakefulness

Manifestation

  • Burning eyes

What It Looks Like in Class

  • Difficulty keeping eyes open

Classroom Strategies

  • Present material orally
  • Consider partner/group reading where another student can read out loud
  • Provide audiobooks for reading-heavy classes
  • Provide digital texts with text-to-speech assistive technology (Many textbook companies publish electronic versions of their books with text-to-speech functions. These may also be advertised as accommodations for English Language Learners. Ask your school to obtain an access code if this is available.)

Symptom: Cognitive Effects of IH

If you think back to a time when you have been exhausted, perhaps after an all-nighter or severe jet lag, then you know that you feel more than just “sleepy.” Exhaustion affects any student’s cognitive functions as well behavioral functions; for the student with IH, it is even more pronounced.

Strategies for Managing Cognitive Effects of IH

Manifestation

  • Short-term memory difficulty

What It Looks Like in Class

  • Forgetting homework
  • Difficulty interpreting directions, especially multi-step directions

Classroom Strategies

  • Homework reminders (write it in their agenda for them or schedule an auto-email to be sent after school)
  • Be considerate and use leniency
  • Repeat directions
  • Provide written directions
  • Simplify directions
  • Written and verbal examples of expectations (e.g., math problems, writing tasks, formatting)

Manifestation

  • Difficulty holding information and manipulating it simultaneously

What It Looks Like in Class

  • Forgets information before writing down notes
  • Is able to hear and understand information, but struggles to analyze it or produce work
  • Works slowly or has little output

Classroom Strategies

  • Note-taker
  • Preferred note-taking/test-taking format (some students benefit from hand-written notes, others from computer use)
  • Extended time on assignments
  • Visual presentation of information

Manifestation

  • Slow response time and difficulty articulating

What It Looks Like in Class

  • Doesn’t participate frequently
  • Gives short or incomplete answers

Classroom Strategies

  • Wait time (pausing before calling on a student to give everyone time to organize their thoughts)
  • Cold calling is not advised
  • Reconsider participation requirements
  • Provide extended time on assignments
  • Inquire about their preferred answer format (some students find it easier to articulate information orally, others in writing)

How can we build relationships with students who have IH?

Being understanding and empathic are important to engaging the student and working effectively with them. It means being aware of and sensitive to the emotions that come from being different and perpetually exhausted. Extreme sleepiness can also exacerbate mood and emotions for some individuals. For example, your students may be:

  • Frustrated
  • Embarrassed and/or ashamed
  • Grieving what they used to be able to do before developing IH
  • Wishing they were “normal”
  • Worried about ostracization or comments from peers
  • Missing out on extracurricular activities
  • Worried about how they will keep up their grades, get into college, hold down a job, etc.

Being understanding and empathetic appears and sounds like:

  • Overlooking a student’s sleepiness, especially if they’ve fallen asleep.
    • Instead of: Clarice! Time to wake up!
    • Say: Nothing at all. However, if necessary, rely on whatever has been previously agreed upon with the student/family.
    • Instead of: Come on, Clarice. Pay attention like Hannah!
    • Say: Nothing at all or something positive. “Great job setting up your work!”
  • Accepting that you may not be aware why a student is sleepy.
    • Instead of: You must have been out too late partying last night! You have to try harder! I saw you fully participate in P.E. so you should fully participate in math class.
    • Say: It looks like you’re having a tough day. Is that true? How can I help?
  • Recognizing the impact of the student’s sleepiness on their functioning.
    • Instead of:  We’re all tired. Your classmates have the same work you do.
    • Say: I’m really proud of all that you’ve accomplished, and I know that you worked twice as hard, too!
  • Understanding that the diagnosis process can be arduous.
    • Give grace while students are absent for medical appointments, trying different medications, etc.
  • Affirming the student’s need for accommodations.
    • Agree to accommodations with a smile.
    • Provide accommodations discreetly.

Educators’ Perspectives

As educators, we are constantly reminded that building relationships is the foundation of successful teaching. As we’ve probably all experienced first-hand, this is all the more true for students who are struggling. The symptoms of IH are often labeled as laziness and individuals with IH often internalize this. It’s crucial to let your student know that you understand their difficulties are caused by an uncontrollable condition. Let them know with your words and your actions.

Please approach these times with the understanding that the student is frustrated and is dealing with far more than the situation at hand. Situations dealing with fatigue should be approached with kindness and discretion.

– Elementary Teacher who has IH

When, how, and what should we communicate with families?

The students and families are the experts about how IH affects the students and their needs. Although this guide can inform you about what IH is, only the student and family can tell you how IH manifests for them. However, you know best when it is appropriate to bring a student into a conversation. A kindergartener probably will not need to be a part of the conversation but a high schooler probably should be, and those 18 and over, of course, must be. For upper elementary students, you may want to have a conversation with the family first and then bring the student in.

When communicating with families, be aware of the potential impact this condition is having on family life. IH is a family matter; it affects everyone in the home. Parents/guardians will spend additional time and energy in the morning trying to wake the child. For some children, it can take over an hour just to get them out of bed.

What can we learn from tough conversations about IH symptoms?

Here are a few questions to raise that will inform you considerably about what it is like for the student to live with IH symptoms:

  • How does IH affect this student?
  • What times of the day are most wakeful and productive?
  • What aspects of school have been hard in the past?
  • What strategies have worked well in the past?
  • Is the student on any medication for IH?
    • If so, does any medication need to be administered during school hours?
    • Are there any side effects to be aware of, such as lack of appetite?
  • What kind of prompts/reminders would be helpful for the student? These may include:
    • Would you like to take a walk in the hallway?
    • Do you need a movement break?
    • Have you written down your homework for tonight?
  • What should I do if the student falls asleep in class?
  • What information is most helpful for me to share with you?

What can we share that may be helpful to the students and their families?

For many students who have IH and their families, the severity and number of symptoms can vary throughout the day, over time, and across settings (e.g., home vs. school). It can be important to share what you observe with families. We must always keep in mind that students are completing the most cognitively demanding and exhausting tasks at school that they have in the course of a day. Thus, you have unique information that the families may want to know, so it may be important to share with them what you observe. For example, you can share what you have observed about:

  • the times of day the student is most alert and most sleepy;
  • the types of tasks the student struggles over and with what types of tasks the student succeeds;
  • the strategies that work best for the student;
  • the side effects of the medications that are apparent, e.g., appetite, mood, health changes over the course of a day.

Note: If students are taking medication for IH, then they are at school for the duration of the efficacy of these medications. It is useful and important to share what you notice with families, such as whether the medication seems to be working, wearing off too soon in the day, or doesn’t seem to be helping at all; what you notice about their appetite or changes in it, for example whether the student is not eating snacks/lunch; and any side effects such as headaches or other physical symptoms. It’s also important to communicate with families when you notice any changes because their doses of medication may need to be adjusted quickly, based on their growth.

Educators’ Perspectives

We know how much families love hearing from educators and how true that especially is for families of students with disabilities. We also know how time consuming it can be. However, you see this student awake far more than the families do, as it’s likely that these students are asleep for the majority of time at home, so you have more information on the student’s current functioning. Communication doesn’t have to be long to be helpful.

Document any changes and communicate it to the parent as soon as possible.

– Middle School Teacher who has IH

How do we maintain professionalism and confidentiality when the student has IH?

Idiopathic hypersomnia is a medical condition. The same confidentiality rules apply as with other students who have disabilities. Even if a student does not have a 504 plan or IEP, it is important to use the same discretion:

  • Never discuss a student’s diagnosis or symptoms with others.
  • Ask for the family’s permission (or permission from the student who is 18 years o or older) before sharing information with others.
  • Explain why you would like to share that information and how the other person’s perspective can help.

Educators’ Perspectives

You probably have other students with 504s or IEPs. This is just like that. When severe enough to impact education, idiopathic hypersomnia falls under the “Other Health Impairment (OHI)” category and is fully covered under ADA as a disability.

IH is a medical issue and should be handled in accordance with FERPA/HIPPA laws. IH students should never be ridiculed, penalized, judged, called out, or isolated for not appearing motivated, falling asleep, and/or closing their eyes.

– Elementary Teacher who has IH

Approved by the Hypersomnia Foundation Board of Directors

Reviewed by Independent Legal Counsel
Medical Content Reviewed by Lynn Marie Trotti, MD, MSc
Research Design & Methods Reviewed by Dwight. E. Giles, Jr, PhD
Editorial Review by Shelley Griewahn
Last Updated:  February 2,  2026

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