Friday, March 23, 2012

Example School Accommodations for Kids with ME/CFS

In the first part of this post on school accommodations for kids with ME/CFS, fibromyalgia, POTS, and related illnesses, I explained some basics: 504 Plans, IEPs, finding an Educational Advocate, and resources to help parents get the help their kids need in school.  Before we go any further, I would like to add three more steps/tips to yesterday’s post:
  • Get a doctor’s note that specifically states the diagnosis(es), the symptoms, and the effects on the child’s ability to attend/handle school.  You can’t get a 504 Plan or an IEP without a doctor’s note, and the more specific it is, the easier it will be to get appropriate accommodations. Our latest note from the Lyme doctor actually spells out the specific accommodations our son needs (homebound tutoring, taking tests at home, reduced work load, etc.)
  • Keep meticulous records.  As Kim pointed out in the comments section of the last post, it is critical that you take detailed notes and keep comprehensive records of ALL discussions with teachers and administrators – print e-mails, take notes at meetings, and after a meeting, send an e-mail back to all attendees to confirm and restate what was agreed.
  • 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 son desperately wanted to be in school with his friends. So, our goal has always been to maximize his time in school while also helping him meet educational goals each year. Your goals might be different, based on your own child’s needs.

In this post, I’m going to list a whole bunch of example accommodations – real-life accommodations from real 504 Plans that have worked for kids and teens with ME/CFS.  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.

Our son first got seriously ill in 5th 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 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!  That’s another tip I should have included yesterday: Find someone to be on your side. In elementary school, it was the principal (who put pressure on the nasty teacher the rest of the year to comply with his’s 504 Plan) and in middle school and high school, it was the guidance counselors. That one person can make a big difference.

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 5th grade to 12th. Our son ended up missing 60 days of school in 5th 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.
  • Not grading handwriting (this 5th 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.

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 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.
  • 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.
  • 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 OI!)
  • 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).

By 7th 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.

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 this year, we realized he was in much worse shape from his Lyme and other tick illnesses treatment, 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, a few weeks ago, we had one final 504 meeting because our son had already missed more than 50 days of school 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. The school administrators shocked us (in a good way, for once!) by proposing:
  • To excuse him from ALL 4th 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.

Then, each of his teachers added their own specifics; most have excused him from all homework, classwork, and quizzes, requiring only unit tests to be completed.  His Physics teacher said he already has enough material to grade him for the year, that he’s already proven he can get an A in the class, so he doesn’t need to do any more or make anything else up.  His Calculus teacher said he’d excuse all remaining work from the 2nd marking period, so he can just focus on making up the more recent work.
[NOTE: Our son graduated on time in 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 (Our younger son’s illness is much milder, so his 504 Plan is just like our older son's was in 7th and 8th grades).  There are many, many other options.  The book I recommended yesterday, 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.  Again, please feel free to share what has worked for you in the Comments section.

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.


Sue Jackson said...

Forgot to mention another example that we haven't used but a friend has:

- According to his IEP, the school must provide transportation to/from school according to his part-time schedule. This was necessary in middle school when his mom was disabled from back problems and couldn't drive. This is a case where an IEP was necessary in order to get funding to pay for the bus.

Also, I forgot to mention that BY LAW, the school must provide an education in "the least restrictive environment." That is why it was illegal for Jamie's middle school to try to force him into 100% homebound instruction when he was still able to attend classes on some days. Another teen girl who lives nearby goes into school just for lunch and an art class, in order to help her stay connected with her peers. She gets her academic classes through homebound instruction.


Char said...

I have spent the weekend trying to ready myself and my 17 yr old daughter w CFS to advocate for college accomadations for next year. We have a meeting this week with Dean of students with disabilities at the college she will be going to next year. Some of our requests are...3 classes instead of 4 for full time status, a single dorm rm on 1st floor near classes, extended time for exams, 2 classes a day - not back to back, note taking service, afternoon classes, exempt from PhysEd, flexible time lines and possibility of pass/fail grading for some classes. We are not even sure if she can do this but we will hope for the best and plan for the worst! Charmagne

upnorth said...

Even as a Masters student I was able to get accommodations for CFS with proper documentation. I think in part it depends on the University, however, I bet if Jamie does decide to go, he will have an easier time getting accommodations in University than in high school and elementary school. It's very interesting to read about the process in the U.S. and what you are/were able to do for your kids. They are truly lucky to have such an advocate.

Sue Jackson said...

Char -

Thanks so much for sharing all this. It is very timely for me, since my son will be going to college next fall (we think - have to wait and see if he is well enough), so I need to have those same meetings with the Office of Disability at the two local colleges he is accepted to. You've given me some great ideas of college-appropriate accommodations to ask for! Thanks.


Anonymous said...


Thanks for all the info. Just like you, I have CFS along with my 15 yr old daughter. When I saw what you were able to ask the school to do for Jamie, I was shocked. Yes, I did not know that we can ask for those things. I am going to start working on this. I will definitely let you know how things go.

I am so glad to hear that Jamie is better. Heather does not even have a good doctor. I will have to start thinking about long drive to find a really good doctor.

The best to you and your family. Thanks for all the information.


Sue Jackson said...

Hi, Huong -

Thanks for leaving a comment. I am sorry to hear that you and your daughter are in a similar circumstance. Yes, we were also surprised when we first learned of all the sorts of accommodations we could request! Most schools aren't even aware of the broad range of things they can do to help, so it is really up to us parents to advocate for our kids.

I was glad to see you've joined our Parent group on Facebook - there is LOTS of great information there, on doctors, treatments, and school accommodations. I think you will find it very helpful.


Jen said...

I had no idea you could waive all district attendance requirements! What exactly did that mean besides summer school? Thank you so much for all this info. It is soo helpful!!!

Sue Jackson said...

It means there are no attendance requirements, no matter how many days your child misses. My son once missed 90 days one school year!

And, as you said, most districts require summer school after so many days missed, so that rqmt is wiped out too.

We have a Parents' group on Facebook for parents of kids dealing with these issues - e-mail me at jacksonde at for the link or just look on FB for Parents of Kids and Teens with ME/CFS.