Food Allergy 101: Encouraging Food Allergy Self-Management And Self-Advocacy

May is Food Allergy Awareness Month. Whenever someone with a food allergy eats even a small amount of their allergen, their body will develop an allergic reaction that could be life-threatening.

Unfortunately, not everyone has this understanding of how serious food allergies are. That’s why kids with food allergies need to know how to advocate for their safety.

Like all life skills, learning to self-manage food allergies takes time. Here’s how to teach your child to manage their own allergies and be a strong self-advocate through the years, so they know how to stay safe.

May is Food Allergy Awareness Month. Food allergies affect over 30 million Americans, including 1 in 13 children.

Whenever someone with a food allergy eats even a small amount of their allergen, their body will develop an allergic reaction that could be life-threatening.

Unfortunately, not everyone has this understanding of how serious food allergies are. That’s why kids with food allergies need to know how to advocate for their safety. Kids with food allergies must be empowered to make good choices that protect them from dangerous situations in school – and must know how to respond in case an allergic reaction does occur.

When you’re the parent or caregiver of a child with food allergies, you'll need to teach your child to manage their own allergies and be a strong self-advocate, so they know how to stay safe.

Like with all life skills, learning to self-manage allergies takes time. Building your child’s self-advocacy skills is a gradual process, where you give them more responsibility and independence as they get older.

We've divided this into appropriate steps for each age group – all the way from toddlerhood through high school. (While high school may seem a long way away if you have a toddler, it’s important to see what you’re working towards!)

Keep in mind, though, that the ages are just suggestions. The most important thing is to teach these skills gradually, so your child can grow into a teen who confidently manages their allergies, keeps themself safe, and is always ready to speak up for their needs.

Communicating About Their Allergy

Your child should be able to tell adults and peers about their food allergy in an age-appropriate way:

Toddlerhood (ages 1-2):

• Start to tell people “I am allergic to [name of food],” “I can’t have [name of food they are allergic to],'' or “No [name of the food they are allergic to].”

Preschool (ages 3-5):

• Learn to ask about all foods, “Is this safe? I’m allergic to [name of food].”
• Learn how to politely but firmly refuse foods they can’t eat:
• Say “I can’t have that. I am allergic to [name of allergen].” Or, “No thank you. I have food allergies.”
• Pretend-playing situations with your child (using play food) will help them develop these two vital skills.
• If they wear it, know to show adults their medical jewelry that indicates their allergy.
• Start learning how to alert a restaurant server to their allergy by pretend-playing “restaurant” with you at home.
• Know how the symptoms of an allergic reaction feel and look, and how to describe the symptoms.
• Know the adults to go to when they experience allergic reaction symptoms (at home or outside the home).
• Know how to tell an adult when they have an allergic reaction.
• Know when and how to ask for an EpiPen injection.

Elementary school (ages 6-10):

• Tell teachers, other adults, and peers what having a food allergy means, including how and why foods containing their allergen(s) put them in danger.
• Know to alert an adult any time they suspect an allergic reaction, even if they aren’t experiencing visible symptoms.
• Briefly advocate for allergy needs at school, when talking with a teacher or other adult in charge.
• This may include asking where to find the EpiPen during gym class, asking for tables to be cleaned before they eat lunch, or asking how they’ll be able to complete a lesson without using foods that contain their allergens.
• At this age, it’s best to first alert the trusted adult that your child will speak to them about an allergy concern, to build an environment of support.
• Start learning how to identify, and stay safe during, food allergy bullying.
• Be ready to say "Stop!" or "Leave me alone!" and walk away if they are bullied.
• Understand that they should tell an adult when food allergy bullying happens, and be ready to alert trusted adults.

Pro tip: Roleplay situations where your child will need to speak up to keep themself safe, to practice self-advocacy skills at home.

Middle school (ages 11-14):

• Take initiative and advocate for their allergy needs in detail (in and out of school) by talking with a teacher or trusted adult.
• At this age, your tween or teen should initiate the conversations on their own, without you alerting the trusted adult first. But they should still know that they can bring you into the conversation if needed.
• Advocate for their allergy needs in situations where parents, teachers, and other adults aren’t present – say, going out to eat when you aren’t around, visiting a social location where food is served (like an arcade or movie theater), or staying overnight with a friend.
• Ask their close friends to have their back in parent-free social settings involving food, and explain how their friends can help keep them safe (including how to use an EpiPen if needed).
• Attend their 504 plan meetings to learn about their food allergy accommodations at school, as well as the emergency care plan that’s in place in case of a severe reaction. Share their own ideas about the food allergy accommodations, to be included in the 504 plan.
• If they’re going on a multi-day trip without parents (say, with school or to camp), work together with you to plan for allergy needs and accommodations. This includes talking to adults in charge and learning about safe food service options together.
• Know how to confidently speak up and advocate for themselves if they are bullied because of their allergies.

High school (ages 14-18)

• Ask entertainment venues and party hosts about safe foods ahead of time, when they know they’ll be attending a party, dance, or event.
• If they’re going on a multi-day trip without parents, talk to the adults in charge – and food service locations on the trip – about allergy needs and accommodations on their own.
• Explain to dates that they can’t kiss if their date has recently eaten a food containing their allergen, and that avoiding foods with their allergens is important to keep them safe.
• Lead all or part of their own 504 plan meeting to self-advocate for food allergy accommodations at school.
• Talk to colleges about their food allergy needs, and research college food allergy accommodations.

Staying Safe Around Food

Your child needs to learn how to avoid the foods that contain their allergen:

Toddlerhood:

• Learn that certain foods can make them very sick, so they need to stay away from those foods.
• Learn which foods are safe and which are unsafe for them to eat, including the name(s) of their unsafe food(s) and what their unsafe food(s) look like.

Pro tip: Showing your toddler pictures of their safe and unsafe foods will help them learn this without exposing them to their allergens. When showing an unsafe food, tell your child, “This [food] is not safe for [child’s name]. This [food] will make [child’s name] sick.”

Preschool:

• Learn to ask about all foods, “Is this safe? I’m allergic to [name of food].”
• Ask you or another trusted adult if a food is safe on special occasions, such as Halloween, Valentine’s Day, and at parties
• Ask if a food is safe before accepting any food outside the home.
• Politely refuse foods they can’t eat: “I can’t have that. I am allergic to [name of allergen].”
• Know which trusted adults it’s safe to accept food from.
• This includes parents, and may include grandparents, babysitters, and other caregivers who know all about your child’s food allergies and are responsible for managing their allergies.
• Say no to any food that they are unsure about, that is not offered by a trusted adult.
• Say no to any food when other children offer to share it.
• Know the “safe snacks” you’ve provided for them when they’re at preschool or otherwise away from home.
• Start to learn about label reading, by watching and listening to you as you read labels:
• Show them both safe and unsafe food labels at the store.
• When a food is safe and you’re adding it to your cart, show them that the label doesn’t contain their allergen and say, “You can eat this! There are no [name of allergen] in this.”
• When a food is unsafe, show them the label and point out the name of their allergen. Say, “You can’t eat this. This [food] contains [name of allergen].”

Elementary school:

• Know how to read food labels and identify whether a food “contains” or “may contain” their allergen – starting with you to guide them, and progressing to reading labels on their own.
• Understand what a “contains” warning means and what a “may contain” warning means.
• Learn to triple-check labels: at the store (or wherever they get the food), after the food is brought home, and once it’s time to use the food.
• Know the types of foods that commonly have their allergens “hidden” inside.
• For example, if a child is allergic to wheat, they should know to be cautious around most baked goods.
• Or, if a child is allergic to eggs, they should know to watch out around most pretzels, as they may be brushed with egg wash.
• Refuse any food where the ingredients are unknown and can’t be verified.
• At a restaurant, know how to:
• Alert a server about allergens and request they tell a chef
• Ask for a menu that details the allergens in each dish
• Ask if a food option is free from their allergens
• Safely order food
• Know how to speak up in unsafe food situations.
• Tell peers why it’s dangerous to eat foods containing their allergen around them.
• Advocate for their safety when peers are eating around them:
• Ask someone eating their allergen to move away from them.
• Move away from the person eating the allergen, if that person isn’t willing to move.
• Investigate new food products, social settings, and activities with your help to determine how to stay safe around foods they aren’t as familiar with.
• With your preparation, understand how to keep themself safe around food during a field trip or day trip.
• Understand, in an age-appropriate way, what it means to be at risk for a severe or life-threatening allergic reaction. This goes beyond the concept that “certain foods can make me sick.”
• This may be a difficult topic for you to explain to your child, but it’s important that you’re the one to teach it first. It’s also vital for self-advocacy, because it will help your child explain the seriousness of food allergies to others.

Middle school:

• Know how to choose restaurants for safety, advocate for their needs at a restaurant, visually check restaurant food, and send it back if they suspect an allergy safety issue – including when you aren’t present.

High school:

• Evaluate the food risk of potentially unsafe social situations, and put their safety needs first.
• For example, if their friends want to go to a restaurant where there’s high risk of cross-contamination in almost all the foods, determine whether they should suggest a safer alternative, meet the friends somewhere else afterward, or skip the hangout altogether.
• Understand how to keep themselves safe on a flight when you aren’t present.

Carrying And Using EpiPens

EpiPens – epinephrine auto-injectors – are the first line of defense when a severe food allergy reaction occurs. They are the only way to stop anaphylaxis (a life-threatening allergic reaction).

So, your child will need to learn how to carry, store, use, and teach others to use this lifesaving tool:

Toddlerhood:

• Start to learn what the Epi-Pen is for, in very simple terms ("for when food makes you sick").
• Get used to what happens if they need an EpiPen, when you use a practice auto-injector.

Preschool:

• Know that the EpiPen is for allergic reactions.
• Know when to ask for an EpiPen injection.
• Watch you pack EpiPens for when you go somewhere together outside the home.

Elementary school:

• Help safely pack EpiPens for school in a special container, and put that container in or with their backpack.
• Learn how to store EpiPens once they get home from school.
• Learn the habit of takingEpiPens wherever they go, with your assistance: “Let’s make sure we grab your EpiPens before we go to the store.”
• With your supervision, practice injecting an expired EpiPen into an orange, to understand the pressure they need to apply when injecting an unused EpiPen.
• Start learning how to self-administer an EpiPen.
• Frequently practice how to use the EpiPen by using a training EpiPen on themself.
• Roleplay allergic reaction situations with a doll or stuffed animal, where they will need to "inject" a training EpiPen (no needle) to stop the toy's "allergic reaction."
• Know that the EpiPen is meant to save a life in case of a severe allergic reaction.
• Be involved in discussions with teachers, nurses, and other responsible adults about managing food allergies at school, including how to inject an EpiPen.

Middle school:

• Be responsible for packing and carrying their own EpiPens, anywhere they go outside the home. This may involve setting phone reminders to help themself remember.
• Be able to self-administer an EpiPen.
• Lead or partially lead discussions with teachers, nurses, and other responsible adults about managing food allergies at school, including how to inject an EpiPen
• Teach trusted friends how to use the EpiPen in case of emergency.
• Advise adults on how to use the EpiPen in case of emergency, including at times when they’re away from parents, teachers, or regular caregivers.
• Know their food allergy emergency action plan and be able to communicate it – what happens after someone has to give them the EpiPen?

High school:

• Be ready to talk with a date about their food allergy emergency action plan, including when and how to inject an EpiPen.

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