Raising Strong Independent Food Allergic Kids

When my son was in preschool I heard the message loud and clear during a food allergy lecture: you must start now to prepare your child to leave the nest.  If we don’t, then we run the risk of placing our children in harm’s way by not teaching them how to manage their life threatening food allergies and anaphylaxis when we are not by their sides.  My motivation to teach him to live safely was born.  The Behavioral Pediatrician leading the lecture explained the various stages of independence and advised us to create plans for each stage.

image courtesy of David Castillo Dominici via Freedigitalphotos.net

1. Warden Stage:  As a parent, it is our job to keep infants, toddlers and young children under “lock down” by controlling their environment and activities to ensure a safe, allergen free environment.  Until children are developmentally capable of self-control, able to read labels and question adults regarding ingredients or cross contact, then it’s our parental job to handle these areas.  This includes modeling safe choices and behavior for the children while teaching them to follow your footsteps.
2. Prison Guard:  When your child is developmentally ready to take on some responsibility, it is important to show them the action and then allow them to execute it under your close watch.  For example, speak to your child about how to order at a restaurant, have them watch you order and then allow them ordering opportunities.  This could also include learning how to label read, how to call a manufacturer and speaking to teachers or coaches about food allergy management, etc.  This phase took us years to master and there are few items we’re still working on!
3. Parole Officer:  This is the last stage of teaching independence.  During this stage, the child self manages and then checks in with the parent to confirm their practices are aligned.  This is the stage I’m moving into and am praying I don’t pop too many gray hairs during!   This stage is critical so that we don’t end up inadvertently push our food allergic children out of the nest without teaching them how to fly.

Control Freaks Beware.  My nature is to be a hovering control freak parent.  Fortunately, food allergies have forced me to pry my fingers back from controlling all that I can and teach my son how to maneuver the world without me at his side wiping down tables, talking to food servers and ordering him new Auvi-Q®‘s when they expire.  This is tough.  I constantly start sentences as I attempt to dictate safety,  then I have a flash in my mind of my son making dangerous choices since I handicapped his ability to self manage.  So, I apologize, put my lips together and let him order or make arrangements.

Note: the top necklace was created for Senator Smith (shown above receiving her gift) representing our food allergic children leaving the nest.  The large heart is the parent and the small heart is still attached while learning how to navigate in the world.  It was created by Grace Moore)
The Plan.  Consciously, at the beginning of each school year, I set in my mind the goals that I want my son to achieve regarding food allergy, anaphylaxis and asthma management .  My plans always includes three steps:

1. Demonstrate what I am teaching (i.e., I have my children watch me call a manufacturer).
2. Allow my children to execute the lesson.  (I invite my children to call the manufacturer with an ingredient and cross contact question).
3. Review my lesson.  Was it successful, are changes required?  Seek out questions and always give room for error.  Repeat the lessons until everyone feels comfortable, confident and has truly mastered that task.

For example, this year goals for my 15-year-old son are to…

• be comfortable with safe restaurant choice research.
• confidently research product ingredients and the risk of cross contact.
• fully understand when to use his Auvi-Q®, (my daughter is an EpiPen® kind of girl while my son prefers the discreet carrying power of the Auvi-Q®).
• keep track of expired Auvi-Q® and asthma medications.
• remember to take his daily asthma maintenance medications.  Unfortunately, puberty has also brought along short-term memory loss and he is constantly forgetting to take his nightly medications.
• learn how to prepare safe breakfast, lunch and dinner meals.
• call upon Allergic Girl, Sloane Miller for some good old-fashioned food allergy coaching–sometimes kid’s don’t want to discussing kissing or handling themselves at a party with their mom!

This is a big year since he will be heading to college in just over two years.  Also, he has been watching me do all of these things for the last 13 years, so he is ready for these lessons.  Some of these items he has been doing, but under my very close eye.  Now, I’m lingering in the kitchen while calls restaurants from his bedroom.  In the past, I would be standing right next him in full hover mode.
Mama Knows Best.  You know your child well, so speak to your board certified allergist to determine the best times to hand over specific areas of responsibility.  If you are feeling overwhelmed, reach out to a parent of an older to learn how they handled independence.  My best mentors have been parents of children a few years older than my son.   I also found great value in speaking to the older food allergic child as well–they gave me great insight.  Lastly, Allergic Girl, Sloane Miller , food allergy coach and author of Allergic Girl, Adventures of Living Well with Food Allergies taught me to let go, roll up my sleeves and start teaching .  In addition, Sloane coaches via Skype and is a treasure trove of teen knowledge and empowerment.  I can’t say enough about her pragmatic coaching and solutions!

It has been done and I know many inspiring and incredible strong independent kids with food allergies–but, I’ve learned that it does take a Village!