Educate, Empower, Empathize: Helping your children Cope with Celiac Disease

My husband is an Eagle Scout. He continues to use this phrase in the present tense, because apparently once you’re an Eagle Scout, you’re always an Eagle Scout. And trust me, he still acts like an Eagle Scout today. He told me this funny story a couple of months ago about when he earned his first required badge for this coveted award (there are 21 of them, so I’m told). It was called the Safety badge, and one of the requirements for it was that he had to go sit at a busy street corner and keep a log of all the dangerous things that people were doing, then recommend ways to improve the situation. Sounds like a pretty boring way for a 12-year-old to spend a Saturday (I was probably at the roller rink fully clad in Madonna-wear … that would be the 1984 version of Madonna, thank you very much), but it is instructive nonetheless.

When you or your child is first diagnosed with celiac disease or gluten intolerance, you begin to feel like you are earning this particular badge. Safety first. When in doubt, don’t eat it. And while that mantra may work for a while, if you’re not careful you could end up overdoing it.

I’ll admit it. I was one of those freak-out new mothers who wanted to swaddle her children in hypoallergenic bubble wrap and protect them from the world. I even had one of those grocery cart baby seat fabric/pillow thingies. Too bad I had to lay my two month old on the sticky gum and germ-infested sidewalk in order to figure out how to attach the darned thing! I even bought a bottle sterilizer…a freaking bottle sterilizer, as if the dishwasher or a boiling pot of water wouldn’t accomplish the same thing. Dr. C, my boys’ pediatrician, got to the point where he simply felt sorry for my husband and assigned me a bit of homework.

Allow Sam to eat a spoonful of dirt.

Yep. Apparently, it’s good for jumpstarting the immune system. I didn’t do it, but I think my husband did. He still won’t tell me but gets a funny smirk when I ask him. And all of this was before celiac diagnosis. So you can imagine my hyper drive reflex when gluten became an enemy. I think I probably earned the equivalent of nine Safety badges, but in the end only one of them counts. And it is only at the end that you can survey your beginning.

You start to see gluten everywhere – on the counter, at the grocery store, at the ball game, in your husband’s teeth (funny story that I’ll share with you later).  This toxic protein floats in the air that you breathe, almost as if it has laser guidance into your child’s leaky gut! Safety Safety Safety! Call the Department of Homeland Security because I’ve learned how to seal a house!

And that dear friends, is the massive crux of our situation. Because for all of the precautions we take and all of the bubble wrap and duct tape we can conjure, there is always a leak in the system, an exposed weakness that we can’t seem to seal. It’s the world, and it has a nasty habit of exposing our weaknesses. And mine are multiple.

Sometimes I get emails or Facebook comments asking me how I was able to get my kids to learn how to eat gluten-free. Like I said, if you’re not careful you can overdo it. I taught my children to treat gluten like it was crack cocaine. There, I admit it.

Are they petrified of gluten? You better believe it. Is it healthy for them to feel this way? Probably not. Are they going to eat it? Nope. You pick your battles.

I don’t know how my boys will handle adolescence and the peer pressure that comes with it. I’m not there yet. I guess we will just do the best we can as life comes at us. I’ve learned not to try to figure it all out right now, like the pillowy grocery cart thingie. Babies stick their fingers in their mouths because they are exploring. This is normal. The more we try to fight this, the crazier we become (an old mom friend of mine would actually smack her kid’s hand when he put his fingers in his mouth…can’t imagine how that is going to turn out).

Look, I know I’m kind of wandering here, but that’s just how this life is. You take your victories and learn from your defeats. We’ve taught our boys to say “please” and “no, thank you” in a variety of situations. We’ve taught them how to read food labels and what to avoid. There’s really no other way around it, this is just the stuff we have to do. I never thought I would have to do it and neither did you. I wish I had a better deal for you, but this is the one you’ve got.The shortcuts are gone. It’s the long road from here.

Educate, empower, empathize.The three E’s baby,that’s how you do it.

Educate your kids as best you can for their age level. Teach them to read and teach them to read food labels (and embrace the kudos you’ll receive when the school teacher freaks over the fact that your 5-year-old can pronounce/read the word sodium benzoate). If you don’t want them to be embarrassed by that, then they need to see you read the food labels. They need to see you ask the restaurant manager for an ingredient list, or check the markings on the baseball snack, or not be afraid to talk to another parent at the baseball game about what a safe snack would be. Most people want to help you. Let them. And let your kids know that they can tell a grown-up, “I can’t have that.” When your 9-year-old son tells his teacher that the paper mache has wheat in it, it’s a game-changer that you have hopefully…

…Empowered him to handle wisely. Do you remember all of those Stranger Danger videos we bought when we were obsessed with…well, all of that Stranger Danger stuff? It’s the same with gluten. You just have to very subtly teach your kids to say “no, thank you” when they are offered gluten. It doesn’t matter where they are – school or Little League or a birthday party. It comes back to that whole Safety First mantra. Just say “no, thank you.” You don’t have to tell them to go all Nancy Reagan on them and shout it out loud. Just try “no, thank you.” Works like a charm and adults actually appreciate it. They will think your kids are polite, and at that point they will be willing to…

…Empathize. You’ll find the right people, and as you do, your kids will learn this valuable skill from you. If you try to pound every square peg into a round hole, it won’t work. Your kids will sense your frustration and it will infect them. Not just in gluten-free life, but in school and friendships and everything else you let this diagnosis affect.

If you really want to know how to help your kids feel normal with a gluten-free diagnosis, then they need to see that YOU feel normal. You can’t freak out like the crazy shopping cart pillow, bottle sterilizing mom that I used to be. They will pick up on that. This is the reason that the Crocodile Hunter’s daughter isn’t afraid of crocodiles…because her dad wasn’t.

It’s really like all things with life as a parent. Your kids will follow your lead. And if they see apprehension and fear, then that is what they will internalize. Don’t be that parent. Don’t be the bottle sterilizer mom. And please try not to be snarky when you see the grocery cart pillowy thingie first-time mom next time. Just smile and point her toward the gluten-free Chex!

Written by Heidi Kelly