Tuesday, February 21, 2017

Dear Skeptics

Dear Skeptics of all things allergic and sensitive,

I get it. I really do. I once was you. Irritated that I had to pack a nut-free snack and lunch. Feeling like the whole movement is one big overreaction. How in the world could this many kids have so many food-related issues?

And then.

Then, our family was subjected to 1.5 years of nonstop screaming, meltdowns, constant diarrhea and, generally, the most challenging behavior I have ever witnessed firsthand in a child. Behavior that affected every corner of our family, our marriage and our life.

We eliminated dairy. And nuts. And preservatives, dyes and sugars.

We had behavioral evaluations done. We read books. We scoured the internet. We asked friends for wisdom. We cried and despaired of ever seeing change.

Ultimately, we had him tested for leaky gut and food sensitivities and allergies.

The result? On top of what we'd already taken out, we nixed gluten, coconut, lettuce, tomatoes, lemons, oranges, apricots, cucumbers, celery, corn, grapes and eggs.

And yes, if you are wondering if it's hard to create food for a ravenous food-loving child with none of the above ingredients, you would be right. It is of great irony to me that my child who loves food the most and eats more food than even I can consume has the most restrictive diet.

People questioned the severity of it. Food sensitivities are controversial, they said. Get more opinions. It's probably just his personality and he'll be fine when he's no longer a toddler.

They might be right.

BUT.

We were willing to try anything to see change. To come up for air from what felt like an impossible lifestyle.

A month into the drastic diet change, after weeks of even more intense behavior as these foods left his body, things shifted. He was calmer. His meltdowns were shorter. His happy lasted longer. His speech dramatically improved. He started to learn strategies to self-calm. His bowel movements radically improved. His trigger wasn't as quick.

And our family began to take a deep breath. Maybe, just maybe, we could have good days. Days that didn't find me with earplugs in and tears running down my face by the time my husband got home. Days where my youngest child wasn't in physical danger from his older brother's rage. Days where my oldest son wanted to spend time with his brother.

And we did. We had lots of them.

But here's the thing.

People don't always get the food insensitivity thing. Or the allergy thing. We have school and parties and Sunday School at church. When we get flyers home saying "Superbowl party with fun snacks!" I cringe. Maybe we'll skip that church day. He won't be able to eat one thing on that table. And he will feel, as always, left out. Or, knowing him, he'll covertly sneak some of it and we'll have a big setback.  Birthday party invitations are basically unwelcome. People offer to bring us dinner? Sure, but here's a list of 1000 things you can't cook for us, so have fun. (And add in the soy allergy for my youngest and it's really a big party around here.) Seriously. Soy is in everything.

Two weeks ago, there was a new teacher in my son's Sunday School classroom. He wears a tag every week that says "Allergies! Only give food from his bag!" This teacher didn't read the tag. She didn't look for his snacks. She handed him microwave popcorn slathered in butter. (And, probably preservatives, let's be honest.) She gave him goldfish crackers. (Gluten, dairy, corn and sugar.) And that child was happy. Man.

And then she noticed the tag. And panicked.

The nursery director came to find us. Is he going to be sick? Is he going to be ok? We're so sorry.

Yes, we sighed. He won't need to go to the hospital. He's not anaphylactic. BUT.

Since that day, 9 days ago, our life has been on pause. Our child went from happy and his version of calm to completely unhinged within 12 hours of consuming that food. And it hasn't let up.

Meltdowns, violence, screaming, defiance. And every corner of our life revolves around trying to keep him regulated. Again.

8 months of hard work undone by a 5 minute snack.

So, please.

If someone tells you not to give a kid something, please listen. My son doesn't have a medical reaction. Many kids do. Many kids can actually end up hospitalized or dead if exposed to something. We are grateful he isn't one.

Believe me, we are not trying to make your lives more difficult. Everything we do, every decision we make in our lives revolves around making sure we have access to the right foods. Road trips, parties, church. We leave with lunches and snacks packed everywhere we go. There is no safe restaurant. The decision to put him on this diet affects all of us every day.

But you know who is hit the hardest?

My 3 year old. Who cannot have ice cream and cookies. Who can't go to chick-fil-a or to birthday parties or enjoy the same snack as his buddies at church. Who constantly asks for food he cannot have and has to deal with disappointment.

When you don't listen and don't take it seriously, he is the one hurt the most. As difficult as the last 8 days have been for us, I can only imagine what his little body must feel like to be reacting like this.

So, dear skeptics, please believe us. Believe us when we tell you our kids can't have sugar or eggs or gluten. Don't quote an article that says the gluten thing is overblown or tell me I should have given him nuts at 6 months old. It's not helpful and it doesn't change the fact that these things affect him much more than they do most other children we know.

We don't know why. But we know they do. That should be enough.

Sincerely,

Recovering Skeptic Whose Son Needs You to Trust Her

1 comment:

  1. Thanks for sharing this struggle. It's hard for us who don't have to deal with the daily ramifications to truly "get it". But your sharing will help!

    ReplyDelete