Thursday, September 13, 2007

My three-year-old goes hungry because of "protocol"

There was a big story in the news here that on the first day of school for the state-run Recovery district, something like 40% of the registed kids didn't show up. It turns out that many families had registered their kids at more than one school - probably one Orleans Parish and one Recovery, and maybe a private or charter as well, to cover their bases in case their first choice turned out not to be ready to open by the first day of school. Last year lots of kids got turned away either because the school wasn't ready or because the child's enrollment had been lost. It's all administrative chaos. Without any way of predicting numbers, there's no way to set budgets, assign classrooms, etc. You'd think someone would have a central list of all the students in public schools and what schools they were assigned to - but no.

Both the teacher and the aide said Susan did really well yesterday at her first full day of school. I think they're surprised, having been prepared for the kid on the year-old evaluation. My big beef today, and it's a big one, is that they've decided they have to have orders from a gastroenterologist that says she is allowed to eat food orally. We already submitted a diet plan from the pediatrician that explicitly said she should be fed orally first, and then get a tube feeding at lunch time to supplement what she takes by mouth. Strangely enough, it's not the tube feedings that have to be approved by the G.I., just the oral ones.

Since she doesn't see a G.I. regularly (her feeding issues aren't digestive, they're behavioral), I don't have a doctor who will just dash off a script for me to fax them. The doctor wants to see her first, which I can understand. The thing is, we had the feeding plan written assuming she'd get oral feeds, so the one tube feeding at lunch time is not enough for the whole day.

She was hungry today, and was reaching for food at snack time, and they wouldn't let her have it. Can you believe this is SUSAN, and she actually wants to eat something and they won't let her???

I'm going to beg the GI nurse to squeeze her in tomorrow. I'm pretty sure the GI requirement is yet another rule the school and/or district (I don't know which) has pulled out of its ass, but I don't have time to fight with them on it.

It seems that the administration is just gridlocked. The more I've thought about it, the more troubled I am that they let a 3 year old go hungry, because protocol says they need approval from a specialist instead of her family doctor to let the kid eat. Something is just upside down there, and part of me is feeling that it's nothing but harassment to make us give up and go away.

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