Example School Accommodations for Kids with ME/CFS

[Updated 9-17-25]

 

In the first part of this post on school accommodations for kids with ME/CFS, long-COVID, fibromyalgia, POTS, EDS, Lyme, and related illnesses, I explained some basics: getting a doctor's letter, keeping records, 504 Plans, IEPs, finding an Educational Advocate, and resources to help parents get the help their kids need in school.  

 

In this post, I list a whole bunch of example accommodations--real-life accommodations from real 504 Plans and IEPs that have worked for kids and teens with ME/CFS and related conditions.  When we first started out, we had no idea even what to ask for and certainly didn’t realize what kinds of help was available. I've included the accommodations our own kids had, as well as others I know of from other kids. I want parents to understand the full breadth of what's possible. 

 

First, consider:  

Recognize that everyone is different.  I am sharing our experiences here in the hopes that they will help you, but it is likely that your child has different needs. Deciding what to do about his or her education is a very personal, very individual decision that can only be made by you and your child. Some kids are better off leaving school entirely. In our case, home schooling was out of the question because I was also sick, and our sons both desperately wanted to be in school with their friends. So, our goal has always been to maximize their time in school while also helping them meet educational goals each year. Your goals might be different, based on your own child’s needs. There are also newer options that weren't available when our kids were in school, like online learning.

 

Advocate for your child. It is highly likely that you will have to fight for what your child needs and that school staff will say they can't provide what you're asking for at first. Read the earlier post on School Accommodations, know your legal rights, bring in an educational advocate (many work for free), and keep advocating for your child (all the information is in that earlier post). We worked with four different schools for our two sons (plus college!), and it was never easy. Don't give up. 

 

Recognize the importance of emotional development, as well as academics. We often had to keep repeating this to recalcitrant school staff: all children go to school not just for academic learning but also for emotional and social development. Spending time with peers is important, if at all possible, along with meeting academic goals.

 

Identify the problem and find someone to be on your side. Often, when the school is pushing back and refusing to provide adequate accommodations, it is because of one particular teacher or administrator. Try to find a way to work around that. When our son's teacher didn't understand in elementary school, we went to the principal (who was wonderful). When our younger son's elementary school nurse did not believe he had ME/CFS, we went directly to the principal and showed him the doctor's letter. When two teachers in middle school refused to work with his accommodations (yes, that's illegal), we chose those two classes to be the ones he took with a homebound instructor (we knew he could only manage 3 in-school classes), and we ended up working with a fabulous homebound instructor who is still a close family friend and cae to our son's college graduation party. And when the vice-principal in his high school said they did not have the funds for any homebound instruction, we went to the principal, who immediately said yes. Find an ally on the staff. Don't give up. The law is on your side.

 

Elementary School 

Our older son first got seriously ill in 5^th grade, when he was still in elementary school. He had a terrible teacher who interpreted his sudden onset of severe cognitive dysfunction as a behavior problem! She called us in for a conference a few weeks after school started and announced to us, “Your son is a defiant, cheating liar.” Our mouths just hung open. This was a kid who’d always gotten straight A’s and was probably the most obedient child in the school, a major rule-follower, always loved by peers and teachers. His brain fog was so bad that he couldn’t remember the teacher’s instructions for 5 minutes, and he couldn’t concentrate on even simple math problems. He was embarrassed by this sudden difficulty, so he was asking his classmates questions or glancing at their papers to see what was going on during classwork. His teacher interpreted this as lying, cheating, and disobeying! 

Fortunately, the school’s principal was wonderful, our savior that year. When we told her what was going on, she said, “Well, I know nothing about ME/CFS or 504 Plans, but we will figure this out together.” Then, she called in the district 504 coordinator, and we sat down and worked things out together (that was our first and last cooperative 504 meeting!). In fact, I ran into this principal just a few weeks ago, and she asked about our son … 7 years later! 

So, anyway, this is what we ended up with in our son’s 504 Plan in elementary school:

• Waive all district attendance requirements (in our school district, the policy requires that any student who misses more than 30 days of school a year must attend summer school; this was waived for him every year, from 5^th grade to 12^th. Our son ended up missing 60 days of school in 5^th grade and 90 days in 12th grade!).
• Assign a home tutor to help him catch up on missed work.
• Give extra time to complete tasks and extend deadlines.
• Shorten assignments and break them into shorter segments.
• Excused from nightly reading assignment, nightly journal writing assignment, and morning math assignment when absent (he was an avid reader anyway).
• Not grading handwriting (this 5^th grade teacher required everything to be written in cursive which our son hadn’t mastered yet and which required a lot of concentration for him to write).
• Ongoing re-teaching after absences (we had trouble getting the teacher to do this).
• Gym is optional depending on his health.
• Waiver from all state mandated testing.

Our younger son's accommodations (different school) were much the same, once we got that obstructive school nurse out of the way). 

Middle-School

Middle school, with multiple teachers, was a whole new ball game, with a whole new staff. At our first 504 meeting, they surprised us (the first of many nasty shocks) by telling us that if our son was sick, he should be on homebound instruction full-time. We argued, fought, and battled for hours until finally, the guidance counselor looked at us and said, “I get it.” She had realized what we'd been arguing that whole time: what was best for the student was for him to be in school as much as he was able. From then on, she was a fabulous ally. Two teachers outright refused to work with our son part-time, so she arranged for those two classes to be taught by a homebound tutor (another lesson: if you can’t beat them, work around them). So, his middle school 504 Plan ended up including the following accommodations:

• Waive all district attendance requirements.
• Waive all electives, leaving only the 5 required academic classes.
• Two classes will be taught by a homebound instructor (the two where the teachers refused to cooperate).
• For the other 3 classes, student will attend as much as he is able (turned out to be about 60% of the time) and teachers will provide assignments during absences. [NOTE that this was not a schedule he had to comply with--impossible with ME/CFS--but was based on his symptoms.]
• Allow extra time for tests if symptoms warrant.
• Exemption from state testing.
• Student may rest in the nurse’s office as needed (this was always in our son’s 504 Plans, but he rarely used it!)
• Modify homework assignments to reduce volume of work to only that necessary to show mastery of skills (this is sometimes a tough one for teachers to understand, but it is critical).
• Allow typewritten assignments; parents may act as scribes (this helped a lot – often our son could manage to verbally dictate to us when he couldn’t manage to write out answers himself).
• Allow student to carry Gatorade with him at all times (by then, we had learned about Orthostatic Intolerance!)
• Allow frequent bathroom breaks (an obvious result of the Gatorade, but somehow a trivial thing that teachers were prone to complain about, so we included it).
• Another boy from our local support group attended the same school, and his accommodation plan was very different. He couldn't get up in the mornings and needed that extra sleep, so he attended school only from noon until the end of the day. In addition, his plan (an IEP since it required funding) included a bus to pick him up at noon! His parents were hugely grateful to us for paving the way and fighting the battles at that school.

By 7^th grade, our son was taking Florinef for OI and had shown dramatic improvement. He no longer needed the homebound tutoring, went back to full-time school including electives and band, and was even able to take the state tests. So, those items were removed from the 504 Plan, but all the rest stayed because he still missed anywhere from 20-25 days of school a year.

 

High School 

For the first three years of high school, the 504 Plan was pretty much the same. Our son attended school full-time but missed 25-35 days a year, so the accommodations focused on reducing volume of work and helping him to catch up when he’d been absent a lot. By October of his senior year, we realized he was in much worse shape from his treatments for Lyme and other tick illnesses, so we added these accommodations:

• Homebound instruction, 2-3 hours a week, to help him keep up with his classes.
• “[He] was granted permission to reduce the number of required credits for senior status. During senior year, students are required to maintain a minimum of 5.5 credits. His current schedule consists of 4.5 credits, due to his physical health.” (this allowed him to drop one class, AP Economics).

Finally, in March of his senior year, we had one final 504 meeting because our son had already missed more than 50 days of school (he ended up missing 90 days that year) and was too sick to even manage a few hours with a tutor each week. This was the meeting where we finally brought an Advocate in, and it paid off. We should have done that years earlier! The school administrators shocked us (in a good way, for once!) by proposing:

• To excuse him from ALL 4^th marking period work, to allow him to use the last quarter to catch up.
• To allow him as much time as he needs to finish his work (through the summer, if necessary) while allowing him to graduate with his class in June. [Note, he finished his last math test the day before college started in August!].
  
• To excuse him from his AP exam for AP Statistics.

• Each of his teachers added their own specifics: most excused him from all homework, classwork, and quizzes, requiring only unit tests to be completed. His Physics teacher said he already had enough material to grade him for the year, that he’d already proven he could get an A in the class, so he didn't need to do any more or make anything else up. His Calculus teacher said he’d excuse all remaining work from the 2^nd marking period, so he can just focus on making up the more recent work.

Another teen girl in our local support group had these accommodations, in order to help her maintain social development, even though she was too sick to attend classes in school:

• All academic classes were taught by a homebound instructor (with many of the same accommodations as our son: to only show mastery, excused from certain assignments & tests, etc.)
• She could go into school for lunch period and for a twice-weekly art class she enjoyed. That helped her stay connected with her peers and not feel left behind. 

 

[NOTE: Our son graduated on time that June, won an award from the staff for overcoming adversity (!), and started college on time in the fall with his peers. See How Our Son Went from Couchbound to College for details.]

So, these are just some examples of the types of accommodations our kids have had, from second grade through high school.  There are many, many other options.  The book I recommended in the other post, A Parents’ Guide to CFIDS: How to Be an Advocate for Your Child With Chronic Fatigue Immune Dysfunction by Dr. David Bell and Mary Robinson, includes more examples of IEPs and 504 Plans. 

NOTE: If you are a parent with a child/teen/young adult with ME/CFS (or related illnesses), you might be interested in a Facebook group for parents of sick kids that I started.

 

Does your child have an accommodation plan?

 

What accommodations have helped? 

 

Share your experiences (or any questions) in the comments below.

 

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