Saturday, October 20, 2012

Talking to School Personnel About ME/CFS

My son was home from college this week with his first bad crash of the school year.  Fortunately, he started to feel bad on the weekend, so he ended up missing only 3 days' of classes and  a few important assignments.  While he was home, I was coaching him on how to manage his absence, how to inform his professors, and what to discuss with them afterward.

Since I seem to have caught his cold and am now the one stuck on the couch, I will just copy the guidelines I wrote for him this week.  I just summarized the talking points that we have always used in past 504 meeting for him and his brother.  These are specific to his situation but could be easily revised for any child/teen/young adult with ME/CFS or similar illnesses at any level of schooling.  Ideally, he would have met with all of his professors before now to cover all of these points; he did talk briefly with each of them at the start of the year, but when he is feeling better, he will meet each of them during their office hours for a more thorough discussion, something along the lines of:
Discussion Points for Accommodation Meetings

Introduction and Overview:
  • I have had Chronic Fatigue Syndrome (ME/CFS) since I was 10 years old.  It is a serious immune system disorder with genetic roots (both my mother and brother have ME/CFS also).
  • I was also recently diagnosed with Lyme disease and 2 other tick infections that I have probably had for about 6 years.  I am being treated for these infections, but the treatment can make you feel worse, especially when the infections have been present for a long time.

What To Expect/How My Illnesses Affects Me

  • ME/CFS is unpredictable – sometimes I feel pretty good and can manage like other students; other times I am completely incapacitated and can’t get up off the couch.
  • My ME/CFS symptoms include:  low energy, low stamina, needing a lot of rest, flu-like symptoms including achiness and sore throat, cognitive dysfunction aka brain fog/difficulty learning and thinking.
  • Lyme disease and the other tick infections make all of my ME/CFS symptoms much worse.  They also cause joint pain, nausea, and other symptoms.
  • I always have some symptoms, but most days, I can manage OK as long as I get a lot of sleep and rest whenever I need to.
  • However, once in a while, I experience a severe flare-up of symptoms (or “crash”) that completely incapacitates me.  These can be triggered by too much exercise or exertion, stress, or being exposed to a virus (like a cold or flu).  When that happens, there is nothing I can do about it except rest and wait for it to pass.  During these times, my cognitive dysfunction becomes very severe, and I am unable to do any schoolwork.  These crashes can last anywhere from a few days to a few weeks but usually last about a week.
  • For math and classes requiring any kind of computation:  Part of my cognitive dysfunction includes dyscalculia, a defined learning disability for mathematical computation (similar to dyslexia for reading).  This causes me to have difficulty with simple computation.  For instance, I might set up a complicated problem correctly but then transpose digits or add 2 + 3 and get 6.  The worse my other symptoms get, the worse the dyscalculia gets.  When I am crashed or flared-up, it becomes severe, making math-related work impossible.
  • For classes requiring writing:  When I am crashed or flared-up, it is almost impossible for me to write because my cognitive dysfunction becomes severe.  Translating thoughts into written words is a complex task that I just can’t manage when my symptoms are severe.

What I Need/How You Can Help:
  • If I am absent due to illness, it means I am severely ill and unable to do any work, even from home. I will e-mail to let you know of my condition and any outstanding assignments and will let you know when I am well enough to return.
  • If I have been absent for more than 1 class, I will need extended deadlines for assignments and extra time to catch up on missed work.  Once I am well enough to return to class, I may still have reduced stamina and be unable to do as much work as I normally do.
  • I need extended time for some tests, especially math or writing.  It is even better if I can split longer tests into shorter increments.  My dyscalculia gets worse over time as I work.  It is also helpful if I can use a calculator to help prevent simple computational errors due to dyscalculia.
  • If I have been absent due to illness for an extended time (more than a week), I may need to shorten and/or skip certain assignments (with your agreement) in order to catch up, decreasing the volume of work while still ensuring mastery of the subject matter.
  • Medical absences should not affect grading.
  • If I have been ill near the end of a semester, I may need to take an Incomplete in the class temporarily, to allow me some extra time to finish the work.
Any questions or concerns?

So, next week, our older son will talk to his professors about these points, and we will (finally) have a 504 meeting with our younger son's high school teachers to discuss these same things.

We usually also print and bring hand-outs for the teachers, nurses, and administrators, like these:
How about you?  Do you have any tips or suggestions for talking to teachers about ME/CFS?


Anonymous said...

I found the best material was the children's packet offered by the National CFIDS Foundation. It gave me actual medical articles to let the school personnel understand what the child was up against. The packet has so much information!

Johannes said...

I dropped out of my engineering program in school in 2008 because I was no longer able to do math without exacerbating my symptoms. I never thought about talking to my teachers about accommodating my disability. It definitely sounds like the way to go though.
From my experience, it also helps to study a subject for which I naturally have more energy. While I still can't do math for a long time, I now have almost limitless energy to write, teach, coach, and speak. I suggest picking a degree that allows students with CFS to do as little of the energy draining classes as possible.
Nevertheless, math is required in almost any university degree. Your suggestions are very helpful in making it through the classes that are the hardest.