Thursday, September 16, 2010

Craig has a 504 Plan!!

Sorry I haven't posted much this week.  Ken was out of town for most of it, so I've been on double-duty, including the early shift, getting up at 6 am each morning, with hectic evenings of running the boys around.  I am wiped out, exhausted, pooped...uh, so tired I can't even think of more words for it.

But I wanted to share some very good - and much overdue - news.  After 4 years of struggling, we finally got approval this morning for Craig, our 12-year old, to have a 504 Plan at school.  For those of you unfamiliar with US school issues, this is an official document, backed by the Americans with Disabilities Act, that spells out accommodations the school will make to help Craig deal with the effects of his illness at school.

We requested one for Craig four years ago, in 3rd grade, when Craig was first diagnosed with CFS and OI.  Even though he missed more than 30 days of school that year, the school's 504 committee (consisting of several people who didn't even know Craig) said that he wasn't eligible for a 504 because he got good therefore, his illness obviously didn't affect his education.  We fought this decision, pointing out that CFS is unpredictable, that Craig was doing well only because his current teacher was helping him after his absences, that we needed something official in place to ensure future teachers would cooperate, and that his older brother, affected the same way by the same illness, had had a 504 plan in place since 5th grade (at other schools in the district)...but to no avail.

The guidance counselor (and 504 Coordinator) at Craig's school also happens to be the mother of one of Craig's friends, and she's always been very supportive of him.  The school has a new principal this year, so we were even more nervous that our previous "hand-shake agreement" wouldn't necessarily be upheld, so the counselor suggested we give it another try.  At 7:50 this morning (yes, another early morning!), Ken and I met with the new principal, a 504 coordinator, the school nurse, and Craig's current teachers.

This time, things were different!  I brought a list of the basic accommodations that are in Jamie's 504 and that we were requesting for Craig, I pointed out that we were already doing all of these things, but informally, by e-mailing the teachers each year and requesting their help.  Craig's teachers were incredibly supportive!  When the old argument came up that he was getting good grades, his social studies teacher said, "Yes, but that's WITH these accommodations in place.  That's the point - they should be formalized."  His math teacher spoke up and said she had taught Jamie in 7th grade, with the exact same 504 Plan, that it worked well, and that Ken and I were very supportive parents who would never abuse the accommodations (see why she was one of Jamie's favorites?).  The new principal voiced his support, too.

In the end, every single person at the meeting agreed that he should have a 504 Plan, and the meeting coordinator said she'd use the list we'd written and have one for us to sign within a week. 

Even though Craig is doing very well for a kid with CFS, thanks to Florinef, having this document in place gives us peace of mind that when the unpredictable happens (as it always does with CFS!), Craig will be backed up by an official document and the federal law.  If we get another loser teacher like he had in 5th grade, who doesn't want to help Crag after his absences, there will enforcement behind the Plan, not just Ken and I saying, "you need to do this."  And when Craig moves on to high school in a couple of years, these accommodations will already be in place to help ease the transition to a new school.  Peace of mind!  We are very excited.

Well, this post is already too long, and I still feel rotten (killer headache, too - I wish this storm would hurry up and come through).  Tomorrow, I'll post the list of accommodations, plus additional ones we've used in he past, to help give parents an idea of what kind of help is available, if you know what to ask for.


  1. Anonymous4:03 PM

    That's great! Congratulations on everyone working together and deciding to be supportive!


  2. That is great news! I had trouble with keeping my kid's 504 plan in place. He had differnt issues but I know what a pain this can be. Congratulations!

  3. Such good news Sue!!!

  4. That's so great :-) Congratulations on getting this through. Parents in this country have the same difficulties in getting their children 'statemented'. Well, actually, some have difficulties getting the school to realise there's a problem at all. A victory for common sense Sue! Well done.

  5. Great news Sue. I know how hard parents have to work to get this for their kids. Job well done!

  6. Please tell us what accomodations you asked for. i am working on my daughters 504 plan now. thank you

  7. Hi, KEP -

    Sorry for the delay - I was away on vacation last week.

    Since I am unable to contact you directly (your profile must be privacy-protected), I will write a blog post this week about 504 plans and IEPs for kids with CFS - I meant to do that months ago anyway! Just give me a couple of days to catch up. If you prefer, you can contact me directly via e-mail (just go to my profile and click on the e-mail button).