This email poses a great question. Do I do what is right my MY situation? Or do I do what may not be necessary, but will make it easier for others in a similar situation in the future?
She needs a solution in 48 hours so time’s a wastin’. Here’s the email.
Long time listener, infrequent commenter, first time caller.
My 13 year old daughter has Celiac Disease, no one else in the family does. We keep a Gluten Free house, and Mom and Dad stay GF while we’re out with her. She was diagnosed 4 years ago, and our lives have adjusted pretty well, although not without the usual trials and tribulations. (Curse you NASCAR! and Kelloggs for canceling GF Rice Krispies!)
My wife and I have a topic that is specific to my daughter’s education, but falls under the larger topic of “What accommodations do Celiacs need or want? We are talking to my daughter’s school district about creating a 504 plan; this is an official document that officially records her disability and the accommodations that the school district MUST make for that disability. If it states something must be done to accommodate the student and the school district fails to do that, they are open to legal and other penalties.
These documents are really meant to talk about what the school district needs to do once, then to make sure they keep doing it. It’s not a “the school district will make their best effort to make these accommodations” document. It’s a “Do this or else you are open to legal action” document.
So we looked at a sample of a 504 plan for another student with Celiac Disease. In her document, there was a long section of what the cafeteria was required to do to safely prepare a Gluten Free meal. New utensils, hand washing and new gloves, separate toaster, etc. It was very specific and just the kind of policy you really hope is in every commercial kitchen that offers separate GF options. The thing is, my daughter has always brought her own lunch, even before she was diagnosed, and her sister, who is non-celiac, doesn’t eat the cafeteria food either. (They’re food snobs, what can I say?). I can’t see us ever needing the policies around the GF cafeteria options, so the question is, should I have them included or not?
On the leave-them-out side, we are part of a typically under-resourced urban school district, and requiring them to spend extra resources on something we don’t need and won’t use seems really wasteful. Also, the stuff we want in there, field trip accommodations, snack food locker on campus, no bathroom restrictions, etc., we really want in there and want it to be followed to the letter. If we have a big section that we just ignore, does it make it easier to ignore the rest? Finally, we’re a go-along-get-along kind of family, and if we don’t need something, why ask for it?
On the put-them-in side, if we don’t mention the cafeteria, then do we make it harder for the next kid with Celiac Disease. “Well, Jenny (not her real name) has Celiac and didn’t ask for any of this cafeteria stuff, so why do you need it?” It’s not the kind of thing you want to amend. And they should do it because, well, it’s the right thing to do.
Right now, we’re thinking about putting in a “for activities as required” clause. So we can list everything, field trips, snacks, cafeteria, then say “We don’t require the cafeteria part”. That way it’s part of the official document, but the school district doesn’t have to change their cafeteria for us. But, we’d thought we put it out there for Dude-Kingdom to comment on, if you thought it was interesting enough.
After your reading the last letter you posted, from 2014, we’ll be long past the decision point, but I thought it still might make for an interesting discussion.
I love everything about this email.
I love the fact the parents stay gluten free with her.
I love the fact that she cares enough about the future celiacs and not just her situation. Note to most people: The world would be a better place if we ALL behaved this way.
I love the fact that she also does not want the under-funded school to waste resources on something that does not apply to their daughter.
I love the last zinger she gave to me about taking too long to get back to emails. Well deserved :)
And I love the fact that she answered her own question pretty much as I would have. The cafeteria clause NEEDS to be in there to protect future celiacs. But at this point in time, there is no need to follow through on it for their daughter.
I think this is a win-win, but never being in the same situation, I could be completely and utterly wrong. It wouldn’t be the first time.
What do you think folks…what would you do?