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  • Gayle Rigione, Allergy Force

Food Allergy Empowerment-Part 3: Loving by Letting Go

This is the third post in our series on empowering your child with food allergies to self-manage them in the future — it's all about loving by letting go as your child with food allergies grows. This series is intended for families who have lived with a food allergy diagnosis for a while, have mastered basic food allergy management skills, and are wondering how to transition food allergy responsibilities to their child with food allergies.

 
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Photo: Erik Brolin on Unsplash

"The most important thing that parents can teach their children is how to get along without them."

—Frank A. Clark, American lawyer and politician



In previous posts we covered the importance of habits and the challenges of the adolescent brain when teaching your child how to manage their food allergies. We also covered the types of knowledge and know-how your child will need to master by the time they leave home.


The purpose of this third post is to explore different approaches for teaching your child — over time — key things they will need to know to independently manage their food allergies as a young adult.


So where to start?


Family Rules {Operating Principles}


Regardless of how you think about them — whether ‘rules’ or ‘values’ or ‘operating principles’ — family rules that everyone in your household knows and lives by can help keep your child with food allergies safe. Rules can be especially helpful when you are climbing the learning curve on allergic living. Generally,

  • Family rules can be explicit or implicit.

  • Your list can be long or short.

  • Rules can be shared with immediate family members and caretakers only, or more widely, with extended family and friends.

  • Your rules will be dynamic — lengthening or shortening over time. Initially, your family rules may serve as guidelines for just the adults in your home. But, as your child becomes more independent, they can serve as speed and heading checks for them, too.

  • Include the entire family — your child with food allergies and siblings — in family rule discussions to refine and gain buy-in from everyone on the rules.

  • Take time to listen to all your children's input, to mindfully hear what they are saying, as well as to 'hear' what they are not saying.

  • Your food allergy rules can also be a subset of a broader set rules you create for your family (e.g., your rules around screen time, social media, homework, chores, curfews.)

As an example, here is how my family approached food allergy rules. Our list of rules was short and sweet.


When our son was first diagnosed, we agreed our home would be a safe haven without any of his allergens. He was allergic to eggs, peanuts, peas, shrimp, soy, and tree nuts. We also never left home without his epinephrine and a bag of safe snacks.


After two decades, our family still never brings peanuts into our home, but eggs are another story. The first time we brought eggs into our home after our son's diagnosis (at 22 months) was when he went to college, and we did it with great care. Today we definitely approach eggs in the house in a more relaxed way than we did when he was small, though we still don't buy them. We have always read food labels multiple times and continue to do so.


You can find ideas (downloadable) for food allergy family rules under Resources at the Allergy Force website. They're food for thought for you.


"Love by doing a little less."

—Gabie Ruiz, M.Ed.



Teaching Skills Mindfully—A Few Considerations


My family's own food allergy journey taught me a hard lesson, that just modelling food allergy management skills — in hopes that your child will master and own them through observation — is not enough. You also need to actively teach them these skills, in age-appropriate ways.


Never Underestimate the Power of Play


A 2018 clinical report from the American Academy of Pediatrics (AAP) suggested that, "To encourage learning, we need to talk to children, let them play, and let them watch what we do as we go about our everyday lives." The AAP report cited the work (1976) of JS Bruner, A. Jolly and Kathy Sylva on Play: Its Role in Development and Evolution, finding that "Play...is fundamental to health, and gives us opportunities to practice and hone the skills needed to live in a complex world." (Reference material on child development and the power of play are cited at the end of this post under Additional Information)**


Giving your child empty boxes with food labels to play 'reading' with when they play 'grocery store' or 'house' can normalize reading food labels when grocery shopping and cooking meals. Playing 'I Spy' at the grocery store to find their allergens when you shop can teach them about safe and unsafe foods. Giving your preschooler an epi-trainer to use on their dolls when they play doctor, alongside their play stethoscope, can normalize using the device.


The Handoff Process Is Not A Straight Path


We've created downloadable empowerment resources for you with approaches for teaching different food allergy management skills over time. Keep in mind:


ONE APPROACH CAN SUPPORT DEVLOPMENT OF MULTIPLE SKILLS


In the resource sheets, you will notice that certain approaches appear multiple times to teach different skills.


For example, you will find 'Include them in 504 meetings with school admins.' identified as an approach for teaching your child about their diagnosis, as well as for teaching them to self-advocate.


Why?


Knowing which accommodations in their school environment will help them feel and stay safe is as much about fully understanding their diagnosis, as it is about having the confidence and knowledge to speak up for what they need. This learning process happens gradually over years, first by listening and observing, then by actively engaging in their 504 planning meetings.


Another example is carrying a 'wallet card'. The wallet card is a tool that not only helps them remember their complete diagnosis, but equips them to clearly communicate their needs as they navigate daily life more independently.


THE PARENTING GRAY ZONE


Each child is gifted with a unique mix of abilities (cognitive, physical, social and emotional) that develop at different rates and need to be nurtured variously over time.


One of your challenges as a food allergy parent will be to pick and choose teaching moments and age-appropriate approaches that align with your child's development. The decisions are not black and white. They are a matter of judgement. You know your child best.


RESPECTING FAMILY VALUES


A word about family values as they relate to preparing your child to handle social situations safely with food allergies.


Several approaches related to navigating socially may conflict with your family values. Family values are deeply personal and need to be respected. Always. These approaches are offered only as suggestions. Use what is helpful. Disregard what is not.


Approaches For Teaching Food Allergy Skills


1. 'Owning' Their Food Allergy Diagnosis


You will want your child to know all the foods they are allergic to, what they look like, where they hide. The longer the list, the more complicated this can be. The list can also change — with allergies added and outgrown over the years.


Here's a summary of some approaches you can use to help your child become expert in their food allergy diagnosis:

  • Foster good food allergy habits {practices}

  • Play games and make songs about their allergens

  • Read stories about food allergies

  • Regroup after allergic reactions and talk about the experience

  • Include them whenever you can as you run interference to keep them safe day-to-day

  • Cook and bake together

  • Volunteer together to raise food allergy awareness

Find more detail on specific approaches and timing here.


2. 'Owning' the Care & Use of Their Auto-Injector


Beyond avoiding ingesting their allergens, keeping epinephrine auto-injectors within reach 24:7 is critical. When they are little, you (or their caretakers) are responsible. However, as your child grows, their studies, activities, and friends will fill their waking hours, often away from you. Over the years you will need to work with them to figure out sustainable solutions for self-carrying their epinephrine. You will need to teach them how and when to use their epinephrine, and how to care for the device.


Here's a summary of some approaches you can use to help your child become expert in the use and care of their auto-injectors:

  • Make auto-injectors as convenient {and discreet} to carry as possible

  • Make carrying TWO non-negotiable

  • Practice using them

  • Teach auto-injector care do's and don'ts

  • Normalize keeping it within reach all the time—it's nothing to be embarrassed by

Find more detail on specific approaches and timing here.


3. Being Confident in Their Own Ability to Self-Advocate


Communicating food allergy information to others is an allergic living fundamental. Your child will need to be able to accurately and thoroughly explain everything — what they are allergic to, what foods contain their allergens, special steps for preparing their food, where they keep their emergency medication, and what an allergic reaction might look like.


As shared in the earlier posts in this series, this may be easy or difficult for them to do, as a function of their temperament and maturity. Some children may find their voice sooner rather than later. The other side of this, however, and equally important, will be your readiness {willingness?} as a parent to let go and let them drive food allergy conversations and explanations without jumping in.


Here are some approaches for helping your child find their food allergy voice:

  • Be an active listener and listen for what is not said, as well as what is said

  • Strategize options together for navigating gatherings and celebrations

  • Roleplay, script, and practice what to do/say privately, then practice real time

  • Eventually encourage them to lead food allergy conversations with adults and peers— friends, acquaintances, and strangers

  • Volunteer together to raise awareness: pave the way, then step back...

  • Trust in yourself enough as a teacher to let go little by little

Find more detail on specific approaches and timing here.



“Life isn’t meant to be lived perfectly…but merely to be LIVED. Boldly, wildly, beautifully, uncertainly, imperfectly, magically LIVED.”

—Mandy Hale, American author



4. Food Label Reading & Interpretation


Food label reading is hard — ingredients lists can be long, hard to find, almost illegible, and store lighting can be dim. It takes time and discipline to do it accurately. You child's life depends on getting it right.


When your child is small, it's on you to read food labels at the store, when you put the food away at home, and again before you use it to prepare a meal. As your child's reading skills develop, you need to teach them how to accurately read and interpret food labels, just like you do, every time they buy a packaged food item.


Beyond having reading skills, this skill set requires your child to know all their allergens and the less common names for them, how to interpret manufacturer voluntary allergen disclosures, and to be able call manufacturers to research product safety.


Here are some approaches you can use to help your child build their label reading skills:

  • Proactively model this skill every time you grocery shop, verbalizing as you go

  • Make learning fun with games and imaginary play

  • Incorporate the task into your behavioral reward strategies

  • Evolve your approach as reading skills develop

  • Consider adding food label rules to your family rules

  • Include them in manufacturer research calls, gradually handing off

  • Cook and bake together, reading food labels along the way

Find more detail on specific approaches and timing here.


These skills will be helpful for evaluating ingredients in personal care products, pet foods, gardening supplies, and alcoholic beverages — all places where their allergens can hide — since labeling for these products is not regulated the way food labeling is regulated in the US.


5. Restaurant Navigation Know-How


Dining out situations are fluid, with many variables beyond your control. When you manage food allergies you factor in whether your child can find something safe to eat at a restaurant, something they might like. It's a process that requires research, trust, and not a small amount of courage.


Mastering this skill requires your child to know all their food allergies, where their allergens might hide in different menu items, cuisines that might be especially risky, and an idea of how restaurant kitchens work (e.g., the fryer, the grill.) They also need to be able to fully explain their allergies to a (possibly frazzled) stranger who may know little about food allergies, who will then relay that information to another stranger who will prepare their food in a busy, possibly space-constrained kitchen.


Here are some approaches to help your child acquire restaurant know-how:

  • Proactively model having 'the server conversation' every time you eat out

  • Incorporate playing 'Restaurant' into imaginary play

  • Express gratitude

  • Teach them about dine-out risks and mitigants

  • Strategize options together for navigating fluid and sometimes awkward scenarios

  • Include them in restaurant research calls, gradually handing off

  • Create a family short-list of safe/trusted restaurants

Find more detail on specific approaches and timing here.


6. Food Allergy Social Savvy


Our human experience is essentially a social one — from the family unit, to friendships, to living, studying, worshiping & working communities. As parents, even though we might be tempted, we can’t keep our children in a bubble to protect them from their allergens. We need to love them by letting go — after equipping them to live safely and freely, socially, with their food allergies — even when it makes our heart ache with apprehension.


Here some approaches  to teach skills for safe socializing:

  • Lean on your family rules

  • Given them a wallet card

  • Proactively encourage & support socializing: playdates, parties, sleepovers

  • Teach them to anticipate scenarios involving food and to plan workarounds

  • Teach them to research events and gatherings to assess risks

  • Encourage extended sleepaway experiences

  • Keep channels of communication open re: romance and alcohol, avoiding prying, respecting your family values

Find more detail on specific approaches and timing here.


(Additional Information at the end of this post offers background material that may be helpful.)**

 

Your child with food allergies will need time to acquire food allergy knowledge and know-how and hone food allergy survival skills. You will need to give them the grace and space to make mistakes under your care and supervision so they are ready to self manage their allergies with confidence when they leave home.


When you empower them with food allergy knowledge and know-how, you free them to BE.


No one tells you that the hardest part of parenting is when your kids grow up.


Loving by letting go is hard, but it's all part of parenting. They will always need you. Their needs will just be different.


“If I had to choose between breathing and loving my children, I would use my last breath to tell them ‘I love you.”

—Unknown



Don't miss Part 1 of this series that explores the importance of habits and the challenges of the adolescent brain when you're working to empower your child with food allergies. Part 2 of the series explores the types of food allergy knowledge & know how you will want your child to 'own' when they leave home.


 
headshot-gayle-rigione-allergy-force-ceo

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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**Additional Information


Empowerment Tactics


Six States of Parenting Framework, adapted for food allergies and shared by The Food Allergy Counselor


Allergic Living article by Gina Clowes on 'Ages and Stages of Food Allergy Management' 


Podcast from Feed Your Can on 'The food allergy journey: Building blocks towards independence'


Empowering children's books from Michelle Nel, Land of Can, and Mightiest Me.



Using Epinephrine


Allergy and Asthma Network post on 'Everything You Need to Know About Epinephrine'


Allergic Living article that explains 'All About Epinephrine...'


University of Michigan video — @ section 3:42 — demonstrates how to use different epinephrine auto-injector devices


The Allergy Force food allergy app offers a 'Reaction Response Guide' (customizable with your own doctor's instructions) that helps your child know what steps to take to manage an allergic reaction.


Food Label Reading


'How to Read Food Labels' information from FARE


'How to Read Food Labels for Allergens' post from Allergy Force


The Allergy Force food allergy app offers a barcode scanner that helps you save time when you shop for food.


Navigating Restaurants


FAACT's Roundtable Podcast on 'Allergen Management Behind the Scenes at Restaurants'


'Knowing What To Ask When You Dine Out' post from Allergy Force


'Dining Out & Food Allergies: Empower Your Child' post from Allergy Force


Multi-lingual wallet cards (aka chef cards) are available from Equal Eats and from Allergy Force on the Allergy Force food allergy app.



Navigating Romantic Encounters


Allergic Living article on 'Food Allergies: Hot Tips For Kissing Safely'


Child Development Resources


Background on developmental progression in children:


Starting on Page 9, this pdf from ocfs.ny.gov provides an outstanding framework on what to expect as a child develops cognitively, physically, socio-emotionally


A 'Complete Guide to Developmental Milestones' from childmind.org



Background on age-appropriate practices:


Article from Penn State University on 'Exploring Developmentally Appropriate Practice (DAP)'



Background on play and it's importance in child development:


Article from the American Academy of Pediatrics on 'The Power of Play: A Pediatric Role in Enhancing Development in Young Children


Widely cited research from JS Bruner, A. Jolly, and K. Sylva on 'Play: Its Role in Development and Evolution' (1976)