CFIDS and School - Resources

We've had a rough few weeks here, with at least one of our boys home sick almost every single day. Craig had a couple of minor crashes or maybe viruses (hard to tell) and bounced back quickly, but Jamie, our 13-year old, has really struggled. He recovered from a bout of bronchitis last month, felt good for a few days, then went into a very severe crash that lasted almost two weeks. He's been back in school for the past week, but his stamina is still lower than normal. We cancelled a weekend trip to Connecticut for my niece's and nephew's birthdays this weekend to give him some time to recover.

I was reminded once again, during Jamie's 9 days absent from school in January, that you have to be an advocate for your child with CFS, in order to get them the support they need at school. I battled for over a week to get Jamie's teachers just to send work home. Jamie even has a 504 plan (an accommodation plan backed by federal law) in place, but this kind of lengthy crash has become so rare for him that his teachers weren't used to dealing with it. Most of them are very kind and supportive, so they probably thought they were doing him a favor by not giving him work when he's sick. As we've explained again and again, though, it's better for him to know what's going on and work on a little at a time as he's able to, than to return to school and be overwhelmed by weeks' worth of work.

At the same time, I've also been trying to help another local Mom whose 11-year old daughter has CFS to get what she needs at school. Her daughter's school has been supportive, but they just don't understand CFS that well. They want her to commit to a regular part-time schedule, attending school all day on Tuesdays and Thursdays. Anyone who lives with CFS knows that's pretty much impossible. We all wish we could plan our crash days and well days like that, but the one thing you can count on with CFIDS is its unpredictability.

For anyone else trying to get the right support for his/her child, here are some excellent resources:

The best book for parents is The Parent's Guide to CFIDS by Dr. Bell, co-authored by Mary Robinson (see next item). This book does a fabulous job of explaining 504 plans and IEP plans and advising parents on how to work with their child's school. It was invaluable to us when Jamie first got sick.

Another resource that helped us get through those first difficult years is the Pediatric Network. It's for parents of kids with CFS, fibromyalgia, and OI. The website includes lots of informative articles, but the Forum is what we found most helpful. It's a message board with sections for both parents and kids/teens (registration is free). The advice and support of other parents that we found through the forum made a huge difference to us. Mary Robinson, co-author of the above book, is also a moderator on the pediatric network.

The CFIDS Association has some excellent resources on its Youth Home Page. There are some great articles here. The first two articles on the Education page were especially helpful to us: Reach Out to School Nurses and Tips for Teachers of Young People with CFIDS. We've handed out many copies of both of these.

And to see more of my blog entries about our own experiences with CFS and school, just click on the school label at the end of this entry.

Jamie just got home from school and says he's feeling much better today, so let's hope this is the beginning of a trend!