| Along with dealing with food allergies for 3 in our family, we have also had to deal with the insulin-dependent diabetes, endometriosis, seizures, Lyme disease and other problems in our middle child. I certainly understand burnout.
Institutions will resist accommodations, because they are often expensive, inconvenient, and labor-intensive. Things won't improve until some sort of active effort is made, either by parents/students, or by some organization representing us, and the effort has to exceed the institutional inertia that is there.
Many of us are accommodating our kids' plans to whatever the schools are doing, and it should be the other way around.
For diabetes, beginning in kindergarten, we had to trailblaze and create a program ourselves. We had to literally teach the school how to do it, and, a few times, needed a lawyer to back us up. It worked out great, after a few years of painful efforts, and now other kids are benefiting.
The point I was trying to make, in comparing schools' unwillingness to accommodate food allergies to barring wheelchairs, is that failure to accommodate is illegal. I don't think it is out of the bounds of "reasonable accommodations" to expect a kid to be able to eat at the school cafeteria, with everyone else versus finding a grocery store and cooking, or going to a restaurant.
In the particular schools we looked at, which are urban, one-building conservatories, not eating in the cafeteria would be a major hardship.
They do take federal funding, and it would be possible to sue.
Our daughter is a good enough musician to have made the final cut at schools like Juilliard. She is one of only two females to make it that far. And yet, we had a school tell us that, because of her health issues, she might not be "up to (their) standards."
Chronic health problems are the last frontier of civil rights, I read the other day. The trouble is, we parents are so tired and burned out, it is hard to advocate. But I plan on trying, and I hope others will too. |