Food Allergies: Advocating for your child
Interview with Erin Smith of Gluten-free Globetrotter
September this year had special meaning. My toddler started 3K and we officially joined the ranks of families who stuff backpacks and rushed out of the house in the mornings.
After I had finished the small mountain of paperwork, I ran through the usual worries. Did I order the right name stickers to label her stuff? Will she make any friends? One thing I never had to worry about is what she will eat. Not at all picky, (unless you consider a high preference for Shitake mushrooms over portobellos picky) she has absolutely zero allergies. And in the litany of things a parent can fret over, I was handed the gift of not having worry about this.
But because this is not my experience, and especially because it’s not, I started to become more attuned to the families who have to pile on the extra worry to keep their food allergic children safe. In this post I talk to Erin Smith of Gluten-free Globetrotter who shares her particular challenge of navigating a new school while playing the part of food allergist advocate for herself and child. What I especially admire about Erin is that having celiac disease in no way limited her love of food or trying new and diverse dishes from around the world.
Before we jump in, here is a quick link to some resources to teach kids about food allergies, including books and rice flour playdough recipes!
Let’s start with a little bit about your background. What is your history with allergies and how Gluten-Free Globetrotter got its start?
I was diagnosed with celiac disease when I was two years old, way back in 1981. Celiac disease is an autoimmune disease that requires me to live completely gluten-free. I developed a shellfish allergy as a child and a kiwi allergy as an adult. My almost four-year old son has a peanut allergy so we are well-versed in all kinds of food allergies and intolerances in my family.
I became a celiac disease support group leader in 2005 and launched my first blog in 2007. In 2011, I started blog Gluten-Free Globetrotter website as a way to encourage others with celiac disease to travel the world while living gluten-free. To date, I have been to 24 countries, 37 states, and 3 continents, living and eating gluten-free and shellfish free 100% of the time.
In what ways is the experience of raising a child with allergies similar or different to having them yourself?
When my son had his very first allergic reaction to peanuts, he was just 10 months old and I was terrified. We had no idea he was allergic to peanuts and wound up in an ambulance to the hospital. At the beginning, I was a million times more nervous about what he was eating than what I eat, knowing he could have an anaphylactic reaction. Even though I am well-versed in managing my own food allergies, I felt a huge responsibility in managing my son's allergies. I also realized quickly how hard it must have been for my parents after my diagnosis in the 1980s. There was no internet so there was a huge learning curve with very limited resources. Today, we are lucky to have resources, labeling laws, and more when it comes to navigating the world with food allergies.
Additionally, my son has many more medical resources today than I did as a child. I tried to learn everything I could about allergy treatments, protocols, and interventions. We actually went through extensive oral immunotherapy with my son with a top NYC allergy center. I have learned so much in his short life!
What has been your experience with advocating for your child? How do you have these conversations with caregivers, family, schools?
I have immediately and instinctively become "Mama Bear" when it comes to advocating for my child. Sending him to daycare and school for the first time was terrifying since I was putting my trust in other adults for the first time to keep him away from peanuts and safe if he had a reaction if I wasn't there. I also wanted to make sure that all adults that were responsible for his care knew exactly how to use an EpiPen. His reaction to peanuts could literally be a life or death situation and I wanted to emphasize how serious they needed to treat this allergy.
Unfortunately, not every adult took his food allergies as seriously as I do. The worst was actually was his school nurse that brought me to tears in her office. I will never stop advocating for my son or trying to keep him safe. I will always follow department of education protocols and ensure that he is treated fairly and safely no matter what.
In what ways do you educate/equip your child with the language/ways to self advocate for themself for the future?
We started oral immunotherapy when my son was just 15 months old, so we have always talked openly about his food allergies and ways to keep him safe. Of course, we need to use age appropriate-language but we make sure he knows that peanuts can make him very sick. As he has gotten older, we have to do a lot of reminding about not sharing snacks or eating anything that someone gives him without asking us first. There have been a few close calls, but the OIT has given us a bit of a safety buffer. For example, he can now eat food made in a shared facility. Of course, we feel very lucky that we have reduced his sensitivity but we are still carrying an EpiPen at all times because he has not outgrown the allergy.
My son is almost four and he now also understands that I cannot eat any gluten. He even asks me if something is gluten-free before he eats something. He knows daddy's food has gluten but mine does not. I love that he is an advocate for me too. It shows that he is understanding better.
And lastly, how can folks learn more about you and your upcoming projects?
You can follow my website at Gluten-Free Globetrotter or find me on instagram. I also have a newsletter where I share upcoming speaking engagements, as well as other gluten-free travel tips. Sign up on my website!
Thank you for reading!
Are there any books about food allergies that you would recommend?
Are there any other questions you would want to ask Erin?
Some of our best friends have a child with a life-threatening peanut allergy, so I was highly motivated, from the time our babies were babies together, to teach our kids about allergies and how to make a safe environment for him. Of course I used books -- I don't know where else to start with anything in life 😉 I really like the Bugabees series for this topic. They're not, like, Newbery winners, but that's okay -- they are engaging enough, visually appealing enough, and most importantly, they get the job done.