Meet Susan (Heim) Kelly, BSN, RN — a tireless advocate for the food allergy community, a mother of four children (one with life threatening food allergies, another with Eosinophilic Esophagitis (EoE),) an allergy & immunology nurse, and author. She shares words of wisdom from her lived experience to help you navigate elementary school so food allergies don't overwhelm the sweetness of your children's 'little years', the joy...
One of the most challenging aspects of food allergy parenting was sending my child with food allergies to school, and feeling the heavy burden of being ‘that food allergy mom.’ When my daughter started school, I was terrified. I felt self-conscious, like a neon sign was always flashing above my head saying, ‘allergy mom!’ Although I knew I was capable of educating my daughter’s teachers and preparing them to safely care for her, I did double duty as an uber-volunteer, baking, organizing and funding, then baking, organizing and funding some more.
“It was like this never ending, absolutely exhausting, round and round allergy waltz.”
Food allergy is one of the only chronic conditions where the care of the condition relies on the care and vigilance of other people. Antagonism can bubble up because the need for that ‘care’ and vigilance can inconvenience others. As someone who was a people pleaser, never wanting to rock the boat, I struggled because rocking the boat is often inherent in being ‘that food allergy mom’. I did all I could to lighten the load for the other parents and to please everyone, but often it felt like it still wasn't enough. At times, I felt suffocated by the ‘crazy allergy mom’ identity, the criticism, the eye rolls.
I worked hard to forge warm and genuine relationships with the parents of my child’s classmates—beyond the casual ‘hi’ and ‘bye’ of the school drop off and pick-up meet ups. I organized playdates, supplied safe snacks for everyone for class parties, and took every opportunity to connect positively and personally with the other parents.
I tried to be open and honest about my daughter’s situation at the outset as friendships grew. I never wanted anyone to feel burdened by my daughter’s medical needs, but I did hope they would want to include her and help protect her because that’s just what you do as a parent, a mom, a neighbor, a friend.
“All advocacy is, at its core, an exercise in empathy.”
—Samantha Power, U.S. Ambassador to the United Nations from 2013 to 2017
I was not only driven to keep my child safe, but as a registered nurse, I saw the education and safety gaps for all students surrounding food allergies in the school setting. I wanted to help the school become more aware of the condition and its inherent challenges, while educating the school on how to be responsive to the needs of children with food allergies in safe and inclusive ways.
To do this, I became an active volunteer at the classroom level and developed solid working relationships with the school nurse and senior administrators at my child’s school. FAACT offers a helpful guide for the all-important conversation food allergy parents must have with school personnel when there child with food allergies enrolls and at the start of each school year. It’s important to set a positive tone for this school conversation — it will likely be the first of many — so it’s not only constructive, but collaborative, as well.
“Sometimes you face difficulties not because you’re doing something wrong but because you’re doing something right.”
Here are several things you can do to keep things in perspective when your child has food allergies, while still savoring the joy and simplicity of the elementary school years.
1. Cultivate a can-do mindset.
Stay positive. Be resolute in pursuit of solutions. Be willing to do the work to make a positive difference for your school and for all children at the school with food allergies.
When your school is less allergy aware, educate, and find your allies. If you are trailblazing, focus on your child and his well being and the rest will follow. FAACT offers a robust set of resources for school personnel that can support your efforts to educate and advocate for allergy sensitive practices at your child’s school. FARE also offers classroom resources that can be helpful.
Keep the safety of your child with food allergies up front and center. Always. The safety of your child is non-negotiable. If you ever feel a situation is unsafe, never hesitate to opt-out if you can’t make opting-in work under any scenario.
2. Be the team player you hope others will be.
Navigating a food allergy diagnosis teaches you how to work constructively with different people, and more importantly, different personalities (some more prickly that others.) Be patient. Be firm when you have to be. Be flexible when you can be. Don’t judge. Be forgiving.
3. It’s ok to get help.
Don’t be reluctant to talk to someone — whether it’s a counselor or a dear friend or an online support group — when the parenting burden feels heavy. It’s ok to get help so you can keep your head above water, mentally and emotionally.
4. Savor the little years.
Don’t let the gravity of keeping your child with food allergies safe overwhelm your joy. Savor the sweet moments of those early school years — the class parties, the school plays, the art projects, the friends, the silly times, the wonder and awe of it all. It’s fleeting. Fast forward a few years and you’ll be watching your 17-year-old drive away in the family car to see friends, whispering a prayer as the taillights disappear down the road.
Susan (Heim) Kelly, BSN, RN is an allergy & immunology nurse, author and mother of four children (one with life threatening food allergies, another with Eosinophilic Esophagitis (EoE).) Sue advocates tirelessly for the food allergic population. Her advocacy work includes public speaking, writing and driving policy changes related to food allergy management and anaphylaxis preparedness in schools and restaurants. She co-leads the FAACT-recognized FRIENDS HELPING FRIENDS food allergy support group and has served as VP of Education for FAACT. Sue is currently working on a Master’s in Public Health (MPH) at Hofstra University. Follow her blog at www.momnursefoodallergies.wordpress.com.
Image: Courtesy of Susan Kelly