Annual 504 Meeting

IMG_1858I am off to Megan’s school to meet with school administrators, the nurse, therapists, and her teachers to work on our annual update of her 504 plan.  We are SUPER blessed to have very quiet joints these days (aside from the pesky jaw), so it seems silly to include homebound services, self-limitation in PE class, a cushion to sit on when the class sits on the carpet, special pencils to protect her finger joints, etc. but heaven forbid we need them and they aren’t written in….   This will be Megan’s 3rd year in public school and for some reason, I’m most anxious about this one.  Her kindergarten year she was half day so still half home with rheumatology mommy and life was good.  In 1st grade she had a family friend as her teacher so we had a fantastic year of cooperation and understanding.  This is the first year that she’s gone full-day with a teacher I do not know.  All families I’ve talked with have spoken highly of this teacher and I am sure Megan will be fine, but this meeting will be the first time I get a glimpse of how understanding and empathetic she will be.  And I’m nervous.

Our biggest struggle right now has been with excessive absences (infusions, appointments, and being sick more often and for more days than a normal child) and side effects of medications.  Megan has bouts of nausea often (most likely due to her medications) and her mouth is sometimes full of ulcerative sores from the medications.  She started off the school year with a horrible mouth sore, requiring daily trips to the nurse’s office to use a numbing wash.  This “invisible” disease can be so frustrating.  I’m sure the teacher thought “oh yay, we have one of THOSE moms this year”.  We’ve recently changed one of Megan’s medicines, so we have no idea what she will experience now.  The uncertainty is difficult to write into her medical plan for school.

Our school nurse is AMAZING.  If I were a millionaire, I would pay off that woman’s car, I swear.  She’s just fantastic.  In fact, I think I’ll order her one of those unicorn coffee mugs (here)….  Our district is also amazing, with PT and OT services within the school building for anything Megan may need!  We are spoiled (but that’s why we moved here).  I’m sure our meeting will be productive and I’ll feel better after the fact.  Fingers crossed for a teacher who doesn’t think I’m a lunatic, and who can love my baby when I’m not around…<3

For more information about 504 medical plans, how the differ from an IEP, visit the Arthritis Foundation’s Kids Get Arthritis Too page.

Update:  Her teacher is AWESOME.  She will have a great year and I have no need to be neurotic 😉

1 thought on “Annual 504 Meeting

  1. Love it! I understand every feeling and every worry. So glad her teacher was great!

    Like

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