As most of you know, I am the mom of a celiac child. Emma is almost 17 now and was diagnosed with celiac disease at 15 months old.
For nearly her entire life my husband and I have been her advocates when it comes to all things gluten free — like managing school lunch, food at soccer tournaments and gluten-free food requests at a restaurant. While both Emma and our other daughter are pretty independent kids, one area where Emma has still relied on us is on the gluten-free front.
That is….until recently…
I guess you never know when something will come together– until I guess — it does. Which is what happened on New Year’s Day.
Emma and I were at Cub Foods, a grocery store in our neighborhood. She doesn’t usually grocery shop with me, but we were out running errands and I needed to stock the pantry and fridge with food after our holiday road trip.
We were walking in the freezer section and we came upon the gluten-free frozen foods. Emma was interested in some Ian’s products she saw….one was fish sticks and the other chicken nuggets. The Fish Sticks said gluten-free on the front. The chicken nuggets said they contained wheat– right on the front.
Emma was so frustrated that these wheat-filled chicken nuggets were in a freezer section labeled gluten free. Gluten-free foods surrounded it from every side in the case. Emma ended up taking all of them and moving them to the next freezer over. She was worried that if we were confused by the chicken nuggets, what would happen if a newly diagnosed person came through and didn’t catch the unwanted wheat ingredient.
So she complained to a person stocking one of the shelves who she believes gave her attitude when he asked her to “show me”. She explained where the mistake was, and that she moved the product away from it. He replied that the section was really just an organic foods section, not gluten free (despite the gluten-free sign posted over the freezer door).
She was still so frustrated she moved her complaint onto the check-out clerk who said Emma should talk to the manager.
And she did. She explained what she saw, what needed to change and why it was important. She finally felt like she was heard after discussing it with the manager. She left more content that she was even five minutes earlier in the store.
Becoming a gluten-free advocate
I was so proud of her. I didn’t interfere, take over or anything, this was all hers. This event was more than just Emma advocating for herself (again, for a brief moment we considered getting her the chicken nuggets until we saw the word wheat on the front), she was worried about others who need gluten-free products to be healthy. It was exciting for me to see this maturity.
But what can you do as a parent to help instill this sense of sticking up for people? For advocacy (self or others)? I certainly don’t have all of the answers. But here is what I noticed with Emma.
- Know your child. Fighting for her gluten-free way of living just wasn’t going to happen for her until she was high school age. She is a quiet kid and wasn’t ready any earlier than high school. One thing we did have her do was advocate for herself in the high school cafeteria. I had a well-established history with the nutrition department and the head of the high school cafeteria. We laid the ground work early with them. Then, Emma was able to take it from there.
- We stopped hounding her about bringing food places. This way, if she didn’t bring food to a friend’s house or on the bus to a soccer game and became hungry, she would learn to have a plan for next time. It was now up to her to make sure she didn’t starve or eat something she shouldn’t have. We made sure we had food for her around the house that she could take at any time– but it was up to her to remember it. This helped create some independence.
- Set examples: I have been advocating for people with celiac disease for a long time…7 years with this blog alone. I also help organize gluten-free events like the MN State Fair gluten-free booth, the Twin Cities Celiac Walk and more. While my husband may not be as outward in his advocacy for celiac awareness, his support of the work I do is great.
When I researched this topic, a lot of what I found discusses kids with disabilities. While that’s not quite what is going on here, I did find the Pacer Center’s handout on self advocacy helpful. It says self advocacy is:
- Speaking up for yourself
- Communicating your strengths, needs and wishes
- Being able to listen to the opinions of others, even when their opinions differ from yours
- Having a sense of self-respect
- Taking responsibility for yourself
- Knowing your rights
- Knowing where to get help or who to go to with a question
Where are your kids at with this? I think they may come with different levels of maturity.
I am so excited to see my daughter’s self confidence and interest in helping others! It totally energized me for what lies ahead for her!