Self-Advocacy for Children with Food Allergies

by Stacy Woelfel

Our six-year-old has a severe allergy to dairy. Helping your child learn to navigate the world when he or she has life-threatening allergies can be scary for both your child and you. We try to give her independence and help her self advocate as much as possible.

A blonde girl wearing a teal fleece coat holds an orange cat at a farm. Her sister stands next to her with a purple kitty hat on her head. She is also wearing a purple fleece coat. Around her waist, she carries both her epinephrine auto injectors in a bright-pink SpiBelt around her waist so they are close in case of a life-threatening reaction. Here are six tips that have helped us:

1. Teach your child about allergies using developmentally appropriate terms.

We can help demystify what’s happening in kids’ bodies and give them power by explaining it in age appropriate or developmentally appropriate terms. Eventually we’ll get into the nitty gritty of anaphylaxis, but right now our daughter knows that her body thinks dairy is poison. Her body is really smart and gives us signs by throwing up the poison or making her tongue itch.

After our daughter’s last reaction, she took charge in the Emergency Room sharing about her smart body, adding that her mom had to give the epinephrine auto injector because lots of different parts of her body let us know about the dairy poison. Although the reaction was very scary, she had the words to describe what happened and speak up for herself to medical professionals.

2. Model “the rule of 3” when reading food labels.

Reading a food label three times—as you put it in your cart, as you put it away at home, and as you pull it out to use it—is not only a smart way to catch your child’s allergen when you might have missed it, but it also models good label reading for your child. Several times using this rule, my husband or I have caught something we missed before we accidentally gave it to our daughter.

We’ll also include our daughter when we make phone calls or write emails to a company when asking about their cleaning practices or what other products may be made on the same food line.

3. Self-carry when appropriate.

Our daughter has been self-carrying an epinephrine auto injector at home since she was three years old. She has also self-carried at school since preschool. She carries her auto injector in a SpiBelt (zippered pouch clipped around the waist that is often used by runners) so it is always close. When she comes home she hangs them in a specific place on the garage door. It’s her responsibility to grab them whenever we go somewhere. Obviously, we both give reminders and have extras with us, but this helps her form good life-long habits by always having her auto injectors on her person.

4. Involve your child in teaching others.

Even though our daughter’s teachers are trained on how to use epinephrine auto injectors, we meet with them ahead of school so our daughter can teach her teachers. It gives us a chance to go over her emergency plan in person. Each year, she makes sure to tell her teacher that she won’t be mad if the teacher has to give her the auto injector and reminds the teacher to hold her legs down firmly so the needle doesn’t rip her skin if she flails.

We have also brought an expired auto injector with us so her teacher can practice on an orange. This way her teachers get to practice with a real auto injector and our daughter feels confident in her teacher’s ability.

5. Model good restaurant behaviors.

Whenever we dine, no matter how often we’ve been to a restaurant, we ask to see the allergen menu. Our daughter finds what she wants to eat and then we check the allergen list together. When she orders, she always says, “Please let the kitchen know I have a dairy allergy.”

This summer when going to a new restaurant, the server went back and asked the kitchen about dairy in the chicken fingers and we were told it was safe. After she asked the server to let the kitchen know about her dairy allergy, the manager came out and let us know that the breadcrumbs contained dairy. If we hadn’t taken both of those steps, she could have had a severe reaction.

6. Encourage allergy play, especially after a reaction.

We added a practice auto injector (no needle) to the doctor’s kit we had. We found it allowed all of our kids to act out allergy play, including what to do after a reaction. When our daughter had a reaction for which I had to give the auto injector, her allergy play increased in the weeks following.

Her stuffed animals and dolls all had “smart bodies” that knew to get the allergen out by giving us different signs. She went through the steps of noticing a reaction, giving the auto injector, calling for help, and comforting her animals in her pretend Emergency Room.

Author: Stacy Woelfel • Date: 9/18/2017

About the Author

Stacy Woelfel (an elementary teacher turned stay-at-home mom) is married to Kyle and mom to three girls. Her youngest, Caroline, had open heart surgery to correct a congenital heart defect (atrial septal defect). Caroline is medically complex and works through chronic fatigue, hypotonia, and cyclic vomiting syndrome. She relies on her GJ tube for supplemental nutrition and loves construction equipment and kitties. Her middle daughter, Eleanor, has a life-threatening dairy allergy and can be found dancing and singing. Charlotte, the oldest, always has a book to read and can often be found immersed in a new art project. Stacy recently added an early childhood degree to her teacher license and enjoys cooking and sewing.

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