I wonder if anyone can give Amy some advice. Her 11 year old daughter is getting ready for her first trip away from home, by herself. To add to the stress of this, her daughter also has celiac disease. What would you do if you were in Amy’s position?
Amy’s story –
This summer, 11 year-old Laura will be attending sleep away camp for the first time. Â Several reasons make this trip a unique one. Â First, Laura was diagnosed with celiac disease in 2010. Â Second, the camp (which is an ordinary camp, not a gluten-free camp) is a month-long. Â And third, its location is in Reggio Emilia, Italy, near Bologna.
Laura is traveling with CISV, an international peace organization that focuses on developing globally-minded leaders and building cross-cultural friendships through camps and programs for children and young adults. Â She is one of four American delegates to a camp that will bring together representatives from 15 countries for the month of July. Â The students stay mostly at the camp, with two weekends spent with Italian host families, and two excursions to see the area in which they are staying.
In addition to the anxiety of going away so far from home, Laura’s parents are trying to prepare for her dietary needs. Â Her celiac disease is well maintained under the strict gluten-free diet which is currently tightly controlled by her mom and dad. Â As for anyone with celiac, controlling the diet at home is much easier than when out and traveling. It’s hard and unfortunately, gluten happens.
As part of the interview process for this camp selection, Laura attended ‘mini-camp’ for a weekend near home. Â Her mom worked with the camp manager and caterer to carefully review and adjust the menu and preparation, took gluten-free foods just for Laura, and drove the kids to the camp to make sure that she could speak in person to the adults in charge. Â Despite all of this, and despite the best of intentions of everyone involved, Laura was still served Rice Krispies ‘off menu’ and got sick.
Trip preparation has to shift to teaching Laura to advocate for herself to adults, which is very difficult for an 11 year-old to do. Â This is different than living life as an adult with celiac making choices and decisions regarding food for yourself.
So add being a child traveling independently (with an adult leader) to the problems that all celiacs have:
- How do you prepare for traveling and all of the unexpected issues that come along with it (no availability of gluten-free foods; lack of space for carrying too much; etc.)?
- How do you ensure that the campsite can and will accommodate the dietary need?
- How do you educate the camp staff about celiac when you don’t speak their language? Â Granted, this is Italy, so there may be more awareness.
- How do you educate two different host families and ensure their willingness and ability to accommodate the dietary restrictions for a weekend?
- How do you craft a plan in case of accidental ingestion when campers can’t have cell phones or computers, and we are completely reliant on the adult leader?
- And how do you empower an 11 year-old to advocate for herself when she has no ability to buy her own food?
Come to think of it, are we nuts to let her go??? Â I may actually just buy an open-ended ticket to Bologna right now! Â Let me know your honest thoughts about this. Â We are really struggling because we want the world to be open to Laura, and we’re trying not to keep her in a bubble. Â We don’t want celiac to limit her in any way, or for her to feel limited or defined by it. Â How do you do it???
Amy would love to hear your thoughts and any advice you may have to give her? Any ideas at all and be honest..