Friday, March 25, 2011


Sometimes dealing with PWS is really a struggle.  I mean sure, you can go days in between a bad day and you can almost feel normal.  You have your routines and you just go about doing things in a normal way.  Then one day the phone rings or you get an e-mail telling you something has happened.  And you stomach drops because you know it's not good. 

K has an IEP for school.  We have to go meet with the school once a year and re-do it to make sure everything we want is in it.  For the past 3 years (at least) it has said specifically in her IEP that she is not allowed to have ANY food at school unless it is sent from home.  Period.  She takes her lunch every single day.  We did strike a deal with the teachers last year that if they called us in advance for things like class parties we would work something out special to send in for her as a substitute or if it wasn't going to be too bad, she could just have what everyone else was having - with close supervision of course.

Well, this past week, as per my previous post, we met with a nutritionist.  She asked us to keep a food log and in keeping with this I e-mailed K's teachers and asked them to let me know if she eats anything at all extra at school.  She is not supposed to, but in the past there has been a history of her getting into things and us not finding out about it until much later and when brought up as an aside. 

The first day after I sent this e-mail, I get an e-mail letting us know that the class had watched a movie and K had received a "small helping" of pretzels.  No advanced warning, no option for substitution, no nothing.  And how much exactly is a "small helping"?  How do I measure that in terms of calories?

The next day I get an e-mail that K had somehow gotten money (later found out this came from her mom's house) and convinced another student to buy her chips and cookies out of a vending machine at school.  Luckily they caught the student before he was able to give the food to her.  So we had to have a discussion about this and that her mom needs to keep money out of sight.  K is not allowed to have money under any circumstances.  If she gets birthday money, we hold it and take her to the store and let her pick something out.

The next day, I get an e-mail letting us know the teacher has brought in individual bags of chips for the students and can K have one or would you like to send something?  Now, I am convinced had I not sent the e-mail asking them to let us know everything they would have just given her the chips without any notification whatsoever to us.  I find this incredibly frustrating.  It goes against our wishes in her IEP.  It goes against what they tell us in conference - that they don't allow class parties or their students to bring in extra food and they emphasize to all students that their food is their own and not for sharing with anyone, ever.  I need to start holding their feet to the fire and do a little research into how the law works in regard to enforcing the IEP.  I know their resources for monitoring are limited but if we don't advocate for K, who will?

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