Advocating for Your Children: How to Keep Them Safe and Give Them Confidence in Celiac Disease Management

March 9, 2015

Advocating for Your Children: How to Keep Them Safe and Give Them Confidence in Celiac Disease Management

By Jamie Eppenauer,

As some of you know, my daughter, who was diagnosed with celiac disease 10 years ago, is a freshman at the University of Washington (UW). When thinking about college, she wanted the real “freshman” experience of living in the dorms. Dorm living means she has to rely on the UW Dining Hall to provide an occasional warm meal. Honestly, entrusting her health to an institution is one of the scariest things I have had to do as a Gluten-Free Mom.

My daughter filed for an accommodation under the Americans with Disabilities Act for gluten-free meals. She met with UW officials on several occasions in an attempt to get safe gluten-free meals. Sadly, UW completely failed to provide safe meals. During her first quarter of college, she ate three meals in the dining hall and was sick after two of them. You can read all of the details in my blog post here.

Because UW did not provide safe meals, we started dropping off frozen meals from home for her to store in the small refrigerator in her dorm room that she shares with her other two roommates. Looking for a little more room to store supplies, she requested her dorm be converted from a triple occupancy to a double when one of her roommates moved out. She also requested a credit on her meal plan, as she was not eating in the dining hall. Both requests were denied and the UW official instead suggested she move out of the dorms.

These types of scenarios can be tricky to manage, especially when you are trying to advocate for your child while simultaneously teaching them the skills they need for times when you aren’t there to step in. Here are some tips to keep in mind when you need to advocate on behalf of your child.

Try this: Don’t give up! Be polite but keep pushing for your rights.
Instead of: Backing down in the face of obstacles.
At that point, it would have been really easy to just give up. UW said “No” to every single request we made. My daughter was eating meals that I prepared for her and dropped off at her dorm, and using her UW dining account to buy coffee and yogurt, and birthday presents for her friends.

But what would giving up teach my daughter? That you don’t have the right to safe meals? That it is okay for people not to take your condition seriously?

Instead, even in face of all of the denials, we persevered and continued to press the issue. We moved up the chain of command, sending an email to the legal department at UW indicating that if we did not hear back we would file a complaint with the Department of Justice.

We finally got their attention and a meeting with the Director of Housing and Food Services at UW. At the very outset they apologized for how poorly they treated my daughter and for their failure to provide safe gluten-free meals. They told my daughter that since she brought this to their attention they were working on a plan to provide safe gluten-free meals for future students and discussed some of the options with her. They also excused her from her dining plan and gave her a key to a small kitchen in her dorm that is reserved for the Residents Assistants but rarely used. They provided an area in the kitchen for her to store some pots and pans and food so she can prepare some of her own meals.

Not only did my daughter get the accommodations she requested but she also learned to keep pushing for her rights.

Try this: Keep your child involved.
Instead of: Doing it all yourself.

Children with celiac disease have to learn how to stand up for themselves. Whether it is the waiter at the restaurant or the mom who brings treats into the classroom and says a little bit won’t hurt, children have to learn how to stand up for themselves and to say “no, that is not okay.”

While we were constantly backing her up, my daughter stood up for her own rights against UW and for the rights of future students. Every email came from her and she attended every meeting. While it is really hard to be the first person to confront this issue, there’s some consolation in knowing that she made a difference. The University is very aware of the issue now and they are working to provide safe gluten-free meals for future students with celiac disease.

Try this: Be polite.
Instead of: Getting nasty.

Be persistent but polite! It would have been really easy to get very nasty with UW because they were clearly wrong and just plain rude at times. But we always kept a positive yet persistent tone in our emails and conversations. In the end, our daughter learned to keep pushing for her stance, but to do it well! And by doing this, she earned the apology and the respect of the UW officials.