“They Need to Learn How to Live in the Real World!”

CAKE! Safe cake for me on my First Communion Day 🙂

“They need to learn how to live in the real world!”  How many parents of food allergic children have heard this line?  It drives me crazy.  I’ve heard this during numerous food allergy conversations.  While it *can* come from a place of concern, rather than a place of, “Your child is ruining all of the fun for everyone else!”  I would never say something like this to a parent of a child with special medical needs.  Yet as food allergy parents, people feel like they can say just about anything to us.  Food allergies are truly a unique diagnosis.  This diagnosis comes with so much judgement from others.

I remember reading an article written by a food allergic teen, discussing her experience in grammar school.  She needed an aide to stay with her all day in school, to make sure she didn’t accidentally eat anything she was allergic to, as well as to treat her with her epinephrine auto injector if she experienced a severe allergic reaction.  She hated this management plan.  She felt so self conscious and excluded.

Instead of the school reducing the amount of food centered celebrations and teaching the class about how to help someone with food allergies, she had her own snack box for every class party and her trusted aide by her side.  One thing that really struck me was how she said everyone thought this was training her for life in the real world.  Being excluded from the same treats during class parties and being surrounded by foods that could potentially harm her were ways to help her in school and in the real world.  Wow.  That’s a lot to ask of a child in the school setting.  She said, “In the real world, I can walk away!  I couldn’t walk away from my classroom.”

Words of wisdom from a food allergic teen, who knew how to walk away from dangerous situations in the real world.

As food allergy parents, we are teaching our children how to live in the real world, Every.  Single.  Day.  Not a lick of food gets past their lips without our kids first thinking, “Is this something I am allergic to?  Could this make me very sick?”  I thought potty training was hard!  Imagine the steps that go into training our food allergic kids from day one.  It’s a process, a process that evolves over time and changes during each stage of development, depending on the needs of each food allergic child.

A few nights ago, my husband and I let our kids go into an awesome ice cream shop.  The kind with colorful pictures of frozen sundaes on the walls, with lots of flavors, toppings and mix-ins to choose from.  My 10 year old daughter with food allergies cannot eat at this place because it’s way too risky.  But she wanted to go in with her sisters, who ordered the most magnificent looking frozen desserts.  My child with food allergies knew she was going to get a safe treat from another place after this.  We thought she was fine with that compromise.  This is not something we would have done when she was too little to understand; however, recently she has become more comfortable with experiences like this.  So we test our parameters, hoping they are helping her adjust to “life in the real world”  under our loving care as her parents.

Interestingly, she had never stepped foot in this particular ice cream shop until that night.  I was upstairs when they came home.  My food allergic daughter ran up the steps to find me and began to cry. I gave her a big hug and asked what happened.  She said, “When I walked in that ice cream store everything SMELLED SO GOOD!  Everything LOOKED SO GOOD!  I just wanted to be able to eat it too, but I can’t.”

<Insert this mom’s heavy heart as our tear-filled hug continued>

After a few minutes pause…

I was so happy to be with her in that moment, to allow her to freely express herself without judgement or criticism.  I was so happy to give my daughter the big hug she needed.  I was so happy to help her see past her limitations, while acknowledging the maturity she has in taking such good care of herself at the tender age of 10.  I was so happy to remind her that she is the boss of her allergies, just as she tells me, and that there are so many other safe and yummy foods she can enjoy.  Lastly, I thought about the food allergic teen I mentioned before.  I thought about her being my daughter’s age, sitting in her 5th grade classroom, while the whole class celebrated together, with delicious looking treats she could not eat because her life depended on it.

I was suddenly so grateful for my daughter’s food allergy aware school, a school that understands the importance of food allergy safety and inclusion.   I was so happy it was me, her mom, who was there to help her.  When something like this ice cream store debacle happens again, because we all know it will, my hope is she can draw strength from both our conversation and hug.

I am so happy she can focus on her schoolwork in her classroom, without the added stress of navigating socially awkward and dangerous food centered celebrations, either all on her own or with the help of an aide.  It’s me, her mom, teaching her how to cope with this difficult (and often overlooked or dismissed) psychological aspect of living with food allergies.

The next time someone gives you the “real world” comment, my advice is to kindly remind them you do this,  Every.  Single.  Day.

“Just Keep Swimming”  Food Allergy Family!