The first thing that my wife and I did when Cam was diagnosed with Celiac disease was make an appointment to talk with the school nurse. Aside from the concerns about the cafeteria and cross-contamination possibilities, we also wanted to make her and his teachers aware that if a situation came up where he had to leave the classroom due to stomach pains, that it was due to this new diagnosis and not just an excuse for him to get out of a boring lesson. The nurse seemed very understanding and knowledgeable and gave us more confidence than the conversation we had earlier that day with the lead cafeteria worker (remember the spaghetti is o.k. conversation?). And while most days for him are fine, some of this found confidence proved to be false. There have been times when he has had problems getting permission to leave the classroom, a situation that could potentially end up as both embarrassing and social-life altering. Even last week, five months after our conversation with the appropriate people at school, he was subject to a situation in his science class that made him uncomfortable. The class was studying the phases of the moon and the lab called for them to show these by using Oreos; asking that they bite the cookies into half-moon, quarter-moon and crescent moon shapes. Of course, Cam could not participate (though he did find a lot of people wanted to be his lab partner that day). Even after telling his teacher during class that he could not have the Oreos, he was asked while leaving if he wanted to take another cookie with him for later enjoyment. Now, my wife and I do not blame the teacher for anything. We can’t imagine how hard it would be to keep track of every kid’s special needs that walk through your door. And while a simple note home stating that a lab using food would have given us the opportunity to send in an alternate cookie (Trader JoJo’s are awesome if you haven’t had them), we understand what happened will happen.
I think what is most bothersome for us is that these are situations and environments that my wife and I don’t have control over. This lifestyle change is still pretty new and it was hard enough for us to adapt to this new reality at home, let alone in the places that our son goes without us. Sending a 12 year-old Celiac into a world that is highly under-educated to his needs is an intimidating thing. We have no doubt that Cam can hold his own (and has) in situations such as the Oreo lab. But what if the situation is bigger? What if it’s not a just a class or a single lunch day that we have to be concerned about? Should we be worried?
Well, we’re about to be tested. Every year, the 8th grade class at his middle school goes on a week long trip to Washington D.C. It is a chance to learn about the foundation and ideals that our nation is built on. It is a chance for the kids to become more independent and bond with each other. It is a trip without parents. Now, the trip does not happen until October and we are scheduled to go to a pre-trip meeting during the next week to learn about the details. But it is already a small source of stress in the house and it’s only going to get worse if the questions we have aren’t answered. I’m sure that they have had food allergy kids on these trips before but think about it. Most places use vegetable oil to account for peanut allergies; dairy products are easily avoidable when getting a burger and fries; gluten is everywhere. When stopping at a fast food restaurant at the halfway point, what is Cam going to get? The opportunity of cross-contamination is off the charts and how fun is DC when you have stomach cramps and have to visit the restrooms of every building on the National Mall? Or worse yet, when your only point of relief is the back of a Coach bus with 80 of your classmates within in a few feet.
Don’t get me wrong. We don’t want him missing out on this trip. We are confident that he can make the right decisions for his own health. Our confidence in the adult supervision knowing his needs could use a boost and thus creates our conundrum. We worry because we don’t want him feeling isolated by not going but we also don’t want him isolated while there. Do the teachers fully understand this? Because we are his parents, we have thought about the worst case scenarios, no matter what the percentages are that they will or will not happen. We want him to have every opportunity that is available to him, not wanting to limit him but knowing that his choices are somewhat limited. It is our nature to nurture. It is our responsibility to question but it is also our job to groom him into being an individual. Is he too young to handle more or is he just growing up too fast for our liking? I’m worried that I know the answer.