In the first part of this post on school accommodations forkids with ME/CFS, fibromyalgia, POTS, and related illnesses, I explained somebasics: 504 Plans, IEPs, finding an Educational Advocate, and resources to helpparents get the help their kids need in school. Before we go any further, I would like to add three moresteps/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 Jamie 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 Jamie 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 exampleaccommodations – real-life accommodations from real 504 Plans that have workedfor kids and teens with CFS. Whenwe first started out, we had no idea even what to ask for and certainly didn’trealize what kinds of help was available.
Jamie first got seriously ill in 5th grade, whenhe was still in elementary school. He had a terrible teacher who interpreted his sudden onset of severecognitive dysfunction as a behavior problem! She called us in for a conference a few weeks after schoolstarted and announced to us, “Your son is a defiant, cheating liar.” Our mouths just hung open. This was a kid who’d always gottenstraight A’s and was probably the most obedient child in the school, a majorrule-follower, always loved by peers and teachers. His brain fog was so bad that he couldn’t remember theteacher’s instructions for 5 minutes, and he couldn’t concentrate on evensimple math problems. He wasembarrassed by this sudden difficulty, so he was asking his classmatesquestions or glancing at their papers to see what was going on duringclasswork. His teacher interpretedthis as lying, cheating, and disobeying!
Fortunately, the school’s principal was wonderful, oursavior that year. When we told herwhat was going on, she said, “Well, I know nothing about 504 Plans, but we willfigure 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 lastcooperative 504 meeting!) In fact,I ran into this principal just a few weeks ago, and she asked about Jamie…7years later! That’s another tip Ishould have included yesterday: Find someone to be on your side. Inelementary school, it was the principal (who put pressure on the nasty teacherthe rest of the year to comply with Jamie’s 504 Plan) and in middle school andhigh school, it was the guidance counselors. That one person can make a big difference.
So, anyway, this is what we ended up with in Jamie’s 504Plan 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 Jamie every year, from 5th grade to 12th. Jamie ended up missing 60 days of school in 5th grade!)Assign a home tutor to help Jamie 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 Jamie 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 ballgame, with a whole new staff. Atour first 504 meeting, they surprised us (the first of many nasty shocks) bytelling us that if Jamie was sick, he should be on homebound instructionfull-time. We argued, fought, andbattled for hours until finally, the guidance counselor looked at us and said,“I get it.” She had realized whatwas best for the student was for him to be in school as much as he wasable. From then on, she was afabulous ally. Two teachersoutright refused to work with Jamie part-time, so she arranged for those twoclasses to be taught by a homebound tutor (another lesson: if you can’t beatthem, work around them). So, hismiddle 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 Jamie’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 Jamie 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, Jamie was taking Florinef and hadshown dramatic improvement. He nolonger needed the homebound tutoring, went back to full-time school includingelectives and band, and was even able to take the state tests. So, those items were removed from the504 Plan, but all the rest stayed because he still missed anywhere from 20-25days of school a year.
For the first three years of high school, the 504 Plan waspretty much the same – Jamie attended school full-time but missed 25-35 days ayear, so the accommodations focused on reducing volume of work and helping himto catch up when he’d been absent a lot. By October this year, we realized Jamie was in much worse shape from hisLyme and other tick illnesses treatment, so we added these accommodations:Homebound instruction, 2-3 hours a week, to help Jamie keep up with his classes.“James 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. James’ 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 meetingbecause Jamie had already missed more than 50 days of school and was too sickto even manage a few hours with a tutor each week. The school administrators shocked us (in a good way, foronce!) by proposing:To excuse Jamie 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.To excuse him from his AP exam for AP Statistics.
Then, each of his teachers added their own specifics; mosthave excused Jamie from all homework, classwork, and quizzes, requiring onlyunit tests to be completed. HisPhysics teacher said he already has enough material to grade Jamie for theyear, that he’s already proven he can get an A in the class, so he doesn’t needto do any more or make anything else up. His Calculus teacher said he’d excuse all remaining work from the 2ndmarking period, so he can just focus on making up the more recent work.
So,these are just some examples of the types of accommodations our kids have had(Craig’s illness is much milder, so his 504 Plan is just like Jamie’s was in 7thand 8th grades). Thereare many, many other options. Thebook I recommended yesterday, A Parents’ Guide to CFIDS: How to Be anAdvocate for Your Child With Chronic Fatigue Immune Dysfunction by Dr.David Bell and Mary Robinson, includes more examples of IEPs and 504Plans. Again, please feel free toshare what has worked for you in the Comments section.