Gayle Rigione, Allergy Force
Food Allergy Rules Can Simplify Your Allergic Life
Having family food allergy rules — however you define them — can serve as guard rails for your allergic lifestyle, helping you keep your family safe and food allergy-related anxiety in check. This post offers perspectives on food allergy rules based on the lived experience of four food allergy moms with children at different developmental stages. Learn more when you read…
Regardless of what you call them — family rules, guidelines, or even operating principles — and regardless of how you implement them, having food allergy-specific rules that everyone in your household buys into can simplify allergic living. They can help you:
Avoid food allergy mistakes when you're newly diagnosed and vulnerable, figuring out your new allergic life.
Ensure your family manages food allergies consistently day-to-day, minimizing the risk of allergen mistakes.
Ensure that your family treats allergic reactions quickly and correctly.
Protect your children from allergen exposures when you're not there.
Keep food allergy-related anxiety in check.
"Having food allergy rules we all agree to and follow reduces our family’s food allergy anxiety."
—Jenny Andjelkovic, FARE National Ambassador
Writing on her family's experience with food allergy rules — Family Rules Can Reduce Food Allergy Anxiety — food allergy mom of three (two in high school & one in college) and FARE National Ambassador Jenny Andjelkovic explains that “with rules in place my family is more confident managing our lives because we know what to do when the unexpected happens.”
Lindsay Schultz, food allergy mom of three in elementary school and founder of Feed Your Can adds important perspective, cautioning that rules may make children feel physically safe, but not always socially or psychologically safe. She explains that rules "may force kids to make safe choices that set them apart, making them different socially from their peers," and that can be hard on them, especially in the elementary and middle school years. Lindsay reminds her kids that 'everyone has their thing', referring to the struggles people face in life that help to build up resilience.
These are all considerations to factor in when you create your family rules.
The Lowdown on Food Allergy Rules
Your family's food allergy rules will need to be right-sized for your lifestyle. They will be a reflection of the type of food allergies you manage, your experiences with allergic reactions, your family's operating style (e.g., as in structured vs. fluid,) and personal values. They will be unique to your family.
Caroline Moassessi, long time food allergy mom of two young adults, food allergy & asthma advocate and founder of GratefulFoodie.com offers, "When it comes to safety, food allergy rules are a good thing. Imagine driving without rules!"
Family food allergy rules can be explicit or implicit.
Every family communicates differently. Some families may choose to formalize their food allergy rules in writing and post them somewhere in their home for everyone to see. Other families may communicate their rules verbally, reinforcing them through ongoing discussion and modeling them in daily life.
For example, Lindsay and her husband parent with a growth mindset, embracing the process of building skills together. She shares that her family has three hard and fast rules — reading food labels, carrying epinephrine everywhere, and always washing hands after eating. The rules are not written down, but each of her three children knows and lives them as ingrained habits.
Since each of Lindsay’s children has a different set of allergies, some overlapping, others not so much, and their home is not allergen-free, they're highly motivated to follow the rules so everyone stays safe. Her kids know “if you can’t read it, you can’t eat it” and check ingredient labels each and every time. Recently, her 5th grade son followed the ‘read it before you eat it’ rule and discovered that their family’s favorite frozen waffle had snuck in a new ingredient — pea protein.* It was buried in the middle of the label and his mom missed it on her read throughs. By following the family’s rule, his sharp eyes helped him and his siblings stay safe. (*Non-top 9 ingredients are often hard to spot because FDA regulations do not require manufacturers to highlight them on food labels in any way.)
Your list of food allergy rules can be long or short.
Too many rules can be confusing for children and hard to remember, especially if you've layered them on top of a bigger list of general family rules (e.g., on manners, screen time, homework, chores.) You might consider starting small and then adding as your children get older.
Caroline remembers when her son was little, he developed a mild case of anxiety surrounding his food allergies. The child psychologist helping them advised "any steps past the three steps [or rules] would produce diminishing returns..."
The Andjelkovic family, however, relies on seven food allergy rules that they've all agreed to and follow to make consistent decisions and stay safe, keeping their anxiety in check.
Your rules can be shared.
You can share them with immediate family members and caretakers only, or more widely, with extended family and friends who spend time with your family. Though it takes clear and patient communication, ensuring that all your child's adult touchpoints are on the same page with you about your family food allergy rules can provide an added safety net for your food allergic loved ones — as in, 'it takes a village.'
Your food allergy rules will be dynamic.
Initially, your family food allergy rules may serve as guidelines for just the adults in your home. But, as your children grow the rules will serve as important safeguards for them to know and follow. Your list of rules may shrink or grow over time. You may discard rules as your family outgrows them, and add new ones that align better with your children's developmental stages. Even the 'keepers' on your list, the ones that withstand the test of time, may have to be tweaked as you experience situations or allergic reactions that teach new lessons.
The rules setting process should involve the whole family.
When you create your family food allergy rules, consider including all your children (with and without food allergies) in the process. Involving everyone in the family can foster a sense of ownership and encourage buy-in because everyone’s had a chance to provide input. Everyone will feel 'heard.'
"Rules can give a child a sense of security and control when managing life and establishing boundaries."
—Caroline Moassessi, Advocate & Grateful Foodie Founder
Right Sizing The List of Rules
After consulting with a child psychologist to help her young son manage his food allergy-related anxiety, it was clear to Caroline that their " task as a family was to create three rules, together."
Here are the rules her family originally created:
Rescue epinephrine auto-injectors and asthma inhalers were to be carried all time by their son with back-ups in Caroline's purse.
Any adult "in charge" of her son had to speak fluent English. Since they were an ethnic household that was not always the case. Her son wanted the adult to be able to call 911 and be fully understood when explaining an emergency situation.
If her son ever felt uncomfortable during any event or situation and asked to leave, they would leave immediately and save questions for later. This helped her son feel empowered and in control. They also invested time in teaching him what 'safe' and 'unsafe' environments looked like.
"I never feel bad about helping both my kids learn that life is packed with rules and they're there to keep them safe," Caroline reflects, adding "that my children actually used our family rules as a safety net to exit uncomfortable social situations gracefully in high school."
In my own family, our list of food allergy rules was similarly short and sweet when our oldest son was newly diagnosed — (1) Don't bring ANA allergens into the home, (2) Read food labels when we purchase & when we prepare food (2 P’s), (3) Carry epinephrine 24:7 — and it remains so today. Our rules initially served as operating principles that helped keep our son with food allergies safe — a running mental checklist — and over time they became internalized habits for him to live safely as a young adult in a world that's not allergen free.
Should Food Allergy Rules Have 'Teeth'?
Rules only work when people follow them.
Depending on your parenting style and your family dynamic, you may want to brainstorm and agree on some consequences for breaking the rules when you create them. Or not.
If you decide that consequences could help your children take your food allergy rules more seriously, be smart about creating them. Consequences can be positive (using praise or rewards) to encourage desired behaviors, or negative (taking away a privilege or having a time-out) to discourage undesirable behaviors. Consequences can be:
Natural outcomes of behaviors (like having an allergic reaction after sharing a friend’s cookie),
Logically related to behaviors (like returning home for forgotten epinephrine, choosing to be late for an activity WITH rather than WITHOUT epinephrine), or
Something entirely different (like missing a sleepover because the epinephrine was forgotten at the library and the library is closed until tomorrow.)
Lindsay's family has not spelled out specific consequences for breaking food allergy rules because they believe that empowering their kids to take responsibility requires some grace and collective reflection on small mistakes — together — to work towards better solutions for next time. She suggests that “anxiety around rules shows up when kids are afraid of their food allergens AND messing up (as in ‘breaking the rules),” and worries that punitive consequences would make her elementary school-aged children more afraid of making mistakes than thinking about the risks in their surroundings.
"I need them to be aware of their surroundings and think through the natural consequences of their actions," says Lindsay, adding, "We want our kids to use their thinking brains to stay safe. If they panic with fear, then problem solving stops. We practice role play scenarios often to prepare them for tricky situations.”
Caroline, who parents young adults, has a different take, especially given that the impulse control/decision-making part of her children’s brains is still developing (and will continue to develop well into their early- to mid-twenties.)
When her children headed to college her family updated their original rule about carrying epinephrine to reflect that her young adults (one in college, one in grad school) self-carry. The revised rule addresses the need to carry their auto-injectors everywhere and NOT take conscious risks (like eating something without a label on purpose) that could hurt them. The consequence for intentionally breaking this rule would be to revoke the privilege of attending college away from home.They'd have to transfer to the local college and live at home until they demonstrate they’re responsible enough to navigate allergic living safely on their own.
Her kids agree with the rule and the consequence and take it very seriously. They realize that attending college away from home is a privilege and don't want to lose that privilege. Caroline admits, "I know this consequence sounds brutal, but if my kids can not be responsible for their health, then they are not responsible enough to attend college away from home.”
“We want our kids to use their thinking brains to stay safe. If they panic with fear, the problem solving stops.”
—Lindsay Schultz, Founder of Feed Your Can
Parent As Role Model
In her post on her family's food allergy rules, Jenny explains that she realized she and her husband are powerful role models for their children. Every choice they made as parents sets an example.
What if they forgot their children's medication when they went out and still allowed them to eat?
What if they second guessed or even dismissed symptoms their kids complained of?
What if they hesitated to use their epinephrine during an allergic reaction?
Then her kids might do the same when they're on their own...
...away from Jenny and her husband...following the example Jenny and her husband set.
Her family decided it was a risk they could not accept and created their family food allergy rules to help them consistently manage key aspects of their allergic life, setting behavior expectations for staying safe.
And, once your family food allergy rules are in place, the diligence you show as a parent in following them will quietly speak volumes. Children are attuned to inequality and hypocrisy, and they will begin to reject food allergy rules if they see adults in their world following them inconsistently. The "do what I say, not what I do," approach to parenting is at best confusing for children, and at worst it can erode the family dynamic with dysfunction.
This is not to say that mistakes won’t happen — mistakes made by parents and children alike — but when they do it’s important to acknowledge them. Lindsay explains, “I try to share mistakes I make with my kids, like totally missing an allergen on a food label, to remind them that mistakes can happen despite someone's best effort and that people can keep learning at any age and do better.”
"Don't worry that children never listen to you; worry that they are always watching you."
—Robert Fulghum, American Author and Minister
These different perspectives on food allergy rules and the different ways families use them to stay safe are offered as food for thought. I learned a great deal from the contributors to this article whose insights from lived experience are invaluable. My hope is that you're inspired to consider [mindfully] creating food allergy rules for your family, if you haven't already done so. And if you do have rules in place, my hope is that you'll re-look at them with fresh eyes to make sure they remain right sized for your family's needs.
A special thanks to our guest contributors for sharing insights into how they incorporate 'food allergy rules' into their allergic lifestyles. We appreciate you: Jenny Andjelkovic, Caroline Moassessi, and Lindsay Schultz.
About the Author: Gayle Rigione is CEO of Allergy Force, the food allergy app. She’s also an allergy mom. She’s lived the heart stopping moments when her son ate the wrong thing, second guessed reactions and raced to the ER. Her professional and personal experiences fuel her passion for creating tools for people with food allergies. Whatever you do, do it with a full heart. Audentes Fortuna Iuvat
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Images: Thank you to Mike Scheid on Unsplash and Bianca Van Dijk from Pixabay
Background on Family Rules
'Family Rules' by raisingchildren.net.au — the Australian parenting website.
'Consequences' by raisingchildren.net.au — the Australian parenting website.
'Essentials for Parenting Toddlers and Preschoolers: Creating Rules' by the Centers for Disease Control and Prevention.
'A Sample of Family Household Rules' by Amy Morin, LCSW for Verywell Family.
'These 5 Family Rules are Essential for Raising Well-Adjusted Kids' by Kerry Flatley for Self-Sufficient Kids.