Advice To College From Students And Supporters
Section 2
Supporters of students who had IH while attending 2- and 4-year private, public, and vocational schools offer the advice that follows; these supporters are not necessarily related to the students in the previous section of this guide. The supporters describe what was useful and important to them in supporting their students and what they want those who work with their students to be aware of and understand about the symptoms with which the students and families live. They do so in The VOICES of IH Supporters and in their summarized statements where they offer insight about living with IH symptoms.
You may find the following Hypersomnia Foundation publications useful as you read through this section of the Guide: IH Summary of Diagnostic Criteria and Symptoms, Glossary of Terms, Hypersomnia Foundation Brochure, Sleepy Student Brochure, Education Essential Guides for College, Self-Advocacy Brochure, and HF video Sleeping My Life Away.
The VOICES of IH:
Make IH Info Materials Visually Available
I think it would be very helpful for the student (or the family with the student’s permission) to have hard copies of the Hypersomnia Foundation Brochure describing IH and hand them out to everyone on campus that they encounter, including their student’s RA and roommates. That way, those folks might realize that the student has a real medical condition and that they are not “just” lazy… or taking illegal drugs. It’s going to be an uphill battle to educate everyone at the school that needs to be educated about the student’s IH, but you hope that the staff that you do educate in turn educates others about IH.
What College Staff Need to Know About IH
The campus staff that work with my student needs to know the following about IH diagnosis and symptoms:
- It’s a neurological condition over which the student has no control (It’s a physical disability, even though it doesn’t look like one).
- The staff needs to know that many people who have IH have symptoms that fluctuate over time (i.e., the sleepiness and cognitive effects get worse, and then better, and then worse again).
- While the student may seem okay one week, the student may be much worse the next week (or the next day).
A. Advice to College Leadership and Faculty
- It is important that campus leadership be available for and receptive to conversations with supporters and their students about IH and the circumstances relevant to the college experience. This is very important to families whose students experience this rarely diagnosed, invisible disability. In turn, the family’s input can be invaluable to helping college staff work with students who have IH. Depending on the size and organizational structure of the institution, key offices for those conversations can include the office of the president, provost, accessibility services, and dean of students (Note: Their titles vary across institutions).
- Families need assurance that campus leadership supports:
- The accommodations their students are given by accessibility services and that leadership will hold faculty accountable to providing them instead of faculty considering them optional;
- Faculty being advised to reach out to accessibility services and the student when the student appears to be falling behind.
- Families need assurance that campus leadership supports:
- It is important that campus leadership, faculty, and accessibility services become aware of and understand the symptoms of IH and the role of the family in the student’s academic life.
- Each student who has IH has a story and each student has unique challenges. Allow the student to explain their own specific needs and challenges. It is important to let go of any preconceptions about a particular health issue because symptoms can be drastically different from one person to the next, even for those with the same exact diagnosis.
- It is often embarrassing and sometimes even humiliating for the student who has IH to be in the position to have to ask for help and discuss intimate details about their health issue.
- Staff may just brush these family members as off as “helicopter parents,” when, in reality, their input will be invaluable to helping campus staff work with students who have this disability.
The VOICES of IH Supporters
Upside Down, Inside Out
The uniqueness of this rarely diagnosed, invisible disease is that students may have had the onset of symptoms just before entering college or in the middle of an academic year. Their lives are thrown into a tizzy and that affects their families’ lives as well. Neither they nor their families can live as they had and instead find that symptoms overcome them. They struggle to find ways to live with and manage:
- Waking in a state of sleep inertia after two hours of trying to wake and still not be able to function well enough to leave their residence;
- Experiencing brain fog at unpredictable times during the day, not being unable to focus or stay focused or organize or express their thoughts;
- Arriving late to class and perhaps not being fully awake and not remembering the class later that day;
- Missing classes due to not being able to physically get out of bed that day or for a few days at a time;
- An inability to structure or express themselves in an organized way or fluidly;
- Missing deadlines.
It may take some time for the students to understand what is happening to their lives; at the same time, they may discuss their symptoms with physicians who don’t believe them or understand the symptoms and they begin to search for a physician who can diagnose them — all while trying to manage their lives and meet the expectations of their courses.
- It is important that campus leadership, faculty, and accessibilty services become aware that supporters are often involved in their students’ education.
- The supporter and student are committed to academic success.
The student is very interested in earning a degree and the supporter is committed to supporting them. Doing so requires an incredible commitment on the part of the student to complete a class assignment and meet course requirements because of their cognitive symptoms and sleep demands. This commitment can require a lot of work on the part of the supporter as well (See Authorizations, Supports, and Accommodations). - The supporter is not just a voice on the phone. Supporters accompany their students to meet the people relevant to their academic and campus life, such as accessibility services, housing services, student affairs, health services, etc. for three reasons:
- First, if their student is struggling with IH symptoms, cannot remain focused, is confused by the organization of the campus, needs to sleep, feels overwhelmed, or cannot organize their thoughts or express themselves in an organized way as they make their way to these offices, the family can assist the student in finding a safe place to pause and perhaps sleep.
- Second, and very importantly, supporters will likely recall information from conversations with the student or about services.
- Third, showing up in person (even though it may require extensive travel) or in a face-to-face call can be much more effective than initially speaking by phone. Supporters will not just be voices on the phone if the student needs something over the course of the academic year. Establishing these relationships early on is tremendously useful in quickly working through adjustments mid-year.
The VOICES of IH Supporters
Safety is Paramount
This is one of the times when the family members must lean in heavily and fast. if the student starts to have issues with their medications, the family needs to be involved ASAP to consult with the student’s sleep doctor and coordinate services with healthcare providers on campus or in the campus community as necessary.
It is important that the campus medical team know about and understand the student’s situation, including that they may need sudden services.
Appearances Can Be Deceiving. When students who have IH appear “awake” but actually are suffering from ”brain fog,” instructors seem to have a higher expectation for what the students can do in class than when the students are very sleepy or falling asleep in class. Please remember that even when students appear awake, they may not be able to be fully attentive and alert, so they may not remember being in class that day, anything that was said, discussed, or viewed in class, or anything the student said in class. What the students need from the instructors are the materials used and covered in class so that when the students do become consciously awake, they will see what they missed and be able to recover some of it. Please be patient with the students if they come to you for additional explanations or discussions about the class they missed cognitively but were physically present for. I know this experience personally: I am a parent who has IH.
B. Advice to Accessibility Specialists
- It’s helpful and encouraging to students who have IH when the front staff of accessibility services is welcoming and friendly. As one supporter noted, It takes great courage for the student to even walk into the office, worried about their peers seeing them or hearing them. Although the office is extremely busy at the beginning of the academic term, it is critically important for the student to know they have an ally in that office.
- It’s very helpful when the accessibility specialist is respectful and understanding of the supporters’ involvement with their student’s education. A family member observed that Both family and student are keenly interested in higher education and given the symptoms and uniqueness of this rarely diagnosed, invisible disease, some family members may be a bit over-involved initially. They, too, are learning, as is their student, because they go through this process together. When the accessibility specialist is supportive of the family, it is most welcomed.
- There is a time for supporters to lean in and a time for them to lean back. Families of students who have IH will probably be involved to varying degrees in different ways in their student’s education and campus life by providing support until such time the student can better understand how the symptoms affect their lives and manage them to a better degree. Family members may seek regular contact with accessibility services until the student is better able to manage academic work and self-advocate. Behind the scenes, families may be involved daily in providing support for campus life as well.
- This misunderstood, invisible disease can elicit disrespect and criticism. It is profoundly helpful to families when accessibility services is receptive to a greater level of family involvement than is customary for healthy students and when they show respect and demonstrate empathy toward students and families alike.
- It’s very helpful when the accessibility specialist openly recognizes the amount of extra effort and time required of students who have IH to complete an assignment or read a chapter. Doing so can create a very strong and cooperative relationship between the office and the family on behalf of the student and serve to strengthen the student’s determination to succeed.
- It’s very helpful when the accessibility specialist can be the go-between for the student and the instructor (who may not know of the student’s diagnosis or be aware of or understand IH symptoms). Supporters recognize that it is not recommended that the accessibility services specialists contact professors on behalf of their student’s needs and greatly appreciate when the accessibility specialist is this go-between for the family. When this support is not possible from the accessibility specialist and is needed, families often request the help of the dean who oversees student matters.
- It’s very helpful when the accessibility specialist supports the student who has IH in the development of self-advocacy skills. To work on these skills takes a lot of emotional and cognitive energy, which the student may not have when the student most needs them. Some family members find it most useful if they, too, are kept informed about their student’s progress so they can reinforce these skills with their student. HF Self-Advocacy Brochure
The VOICES of IH
Understanding Goes a Long Way. When the student seems awake and cognitively functioning BUT is really feeling fogged down and experience sleep drunkenness, for me, as a parent who has IH, this is a lot worse than being very sleepy all day – as hard as that is to live with, and I have. It is also more difficult for others, especially instructors, to understand because of the way the student looks in class if it feeds into the common misconceptions that they are hung over from partying all night or are high on marijuana. What the student needs at that point is understanding. Their cognitive state could have begun while on their way to class or they may have decided to attend class in that cognitive state so they wouldn’t accrue absences. Checking in with the student privately at the end of class or by email goes a long way with the student feeling supported in their disease.
The VOICES of IH
When your students are too sleepy to advocate for themselves, the family may have to track down forms and make the phone calls to various offices on campus. Families of students who don’t have IH may criticize you for not forcing your student to take on these tasks themself and not realize that your student has a real disability and may not be able to handle these tasks. This is also true of university personnel who have never heard of IH or other sleep disorders–these folks may think you are being a “helicopter parent,” If your student had a visible, physical disability you wouldn’t face such issues. Nor would your student. IH is a real, physical disability.
Authorizations, Supports, and Accommodations
- It is most important that campus staff respect authorizations given by the student to their families:
- It is necessary to honor the student’s request to give family members authorizations to speak in their student’s absence and on behalf of their student when the student is not able to do so due to symptoms of IH.
- It is necessary to honor the student’s request to allow their family access to their campus email so the family members can assist the student to stay on top of the course workload, notices, deadlines, and managing communications.
- It is very helpful when supporters can arrange the following daily support for their student:
- Wake-up services: Sometimes accessibility services provide this service to ensure that the student is awake and functioning before leaving for campus. Sometimes it is a private, off-campus company that provides this service. Sometimes it is family members who make multiple calls and need to call a service when the student does not answer the wake-up calls.
- An on-campus dorm room even while the student lives off campus in the event the student needs to rest/sleep in between classes/studies/activities or is too tired/sleepy to get safely back to their off-campus residence and needs to spend the night in the dorm.
- Off-campus management and security services in the event the student needs assistance or the family needs a wellness check on their student.
- Food availability for the student’s awake times.
- Arrange for a refrigerator and microwave in the student’s room so they can eat around their sleep schedule.
- Request alternative food options from campus, such as grocery deliveries, which could be charged against the student’s meal plan.
- Work with campus food services to ensure healthy meal options available 24/7 for students who have IH via partnerships or a special arrangement with a vendor. Balanced meals could be prepared for the student, who can keep them frozen in their room to be heated when their sleep schedule allows eating, long after the dining commons stops serving meals.
- Arrange for private food delivery services such as Grub Hub, Uber Eats, Door Dash, local grocery delivery services such as Instacart, etc.
- Accommodations and supports students who have IH need:
Note: Students who had 504 plans in high school may need to be reminded about how their high school 504 or IEP Plans differ from college accommodations. Students whose IH symptoms did not interfere with learning until they entered college need to be informed about college accommodations and which are available to them. For more information, see Education Essentials #3 Guide to Requesting Accommodations- Access to early registration based on the student’s IH needs (napping and sleep schedules)
- Accessibility services will reach out to the family when the student appears to be falling behind.
- Providing access to instructor’s bulleted notes
- Flexibility with tardiness, attendance and deadlines be respected and seriously considered. Students who have IH need understanding, not punishment, for their symptoms, which are evident in class punctuality, attendance, assignment deadlines, in-class attention/focus, and wakefulness, e.g., preferred seating, movement breaks, access to drinks during class, etc.
- Flexibility with testing options
- Extended time on tests
- Making tests available when the student is awake and functioning
- Offering long tests in chunked-down segments over a period of at least two days