Navigating those heart-breaking first “no’s”.

Telling your toddler or child they can't have what every other child can sucks. We share some of our learns in navigating those difficult first moments.

by | Jan 21, 2020

It’s hard to describe to someone who hasn’t been through this how gut wrenching it can be to tell your child “no” to everything they used to know as normal. I’m writing this post because it’s something I would have wanted to read. Think of all of the places where food is part of your life. That cake pop they might get at Starbucks while you grab a coffee. That grocery store free cookie. Church groups, family get togethers, birthday parties, holiday events, block parties — you get the idea. This post is dedicated to getting through those first ”no, I’m sorry, but it’s not gluten free” moments.

Our first “no”

We had just gotten the diagnosis and were running to Target to explore gluten free items. Pre-celiac disease, we would often stop at the Starbucks inside and I would get a coffee and N would get a cake pop. As we pulled up to the store, I felt nervous. I knew she would ask and I had been thinking of how I would talk to her about it the entire drive. We walked into the store and of course, N asked and pointed towards the Starbucks. I kept my outward appearance calm and matter of fact but internally my heart sank. We pulled our cart over to the side and I got down on her level and we talked.

N eating a Cake Pop at the Target Starbucks prior to her diagnosis of celiac disease.

I started with the facts

It began something like this. “Remember how you used to get tummy aches?” N nodded. “Well, that’s because we found out you can’t have something called gluten. Gluten is in cake pops. I’m wondering if we can work together to find a new treat for you to get that is gluten free.” To my surprise, N agreed and was excited for our little gluten free adventure. We spent the rest of the trip going up and down the aisles looking for items that had the gluten free label. While N cannot read, I still picked up the packaging and showed her the “GF” wording and symbols to keep her engaged. N settled on a pack of Goodie Girl cookies (delicious by the way!) and was happy with this substitution.

Focus on what they can have

That first Target trip was the first of many similar experiences. We basically had to undo the food associations that N had with many places she was used to visiting. That conversation has been had many, many more times. We still have it frequently! N is only a toddler after all. We’ve found success in focusing on what she can have vs. all of the things she cannot. If she asks for something that has gluten, we find a suitable gluten free substitute. Does some of it taste different? Yes! Does some of it taste so similar to a gluten filled product that I have to double check the packaging, also yes! Which brings me to my next point.

Different doesn’t mean worse

Getting to this place has been a journey. I won’t lie about that. I also know that keeping the mantra of “different doesn’t mean worse” in my head has helped. Sometimes gluten free food gets a bad rap as being “lesser than.” And while some products may deserve such a label, others do not. There are some incredible gluten free foods out there. I love following different gluten free cooking blogs and Facebook pages. They’re inspiring! There’s nothing they can’t make gluten free, I’m convinced of it.

Honor your own feelings

As a parent, you will have feelings about all of these changes. It was a rollercoaster ride for us. One minute you think you’re getting it, the next you get triggered by a Facebook post of kids at a gluten filled cookie decorating party (not speaking from experience at all there #sarcasm). Honor your feelings. Food is an enormous part of our culture. Most of us are used to it being a staple of every gathering we’ve ever been to! I now love and appreciate when events are not based around food by the way. I never would have had that perspective before.

I’ve discovered how important it is for me to process my own feelings about this major life change so that I can help and empower N to do the same. Listen and accept your feelings, but don’t stay in that place. Reach out for help if you need it, whether it be from a family member, friend, pastor, or therapist. Your feelings are valid.

Honor your child’s feelings

N has handled the changes we’ve made incredibly well. I am writing this from the perspective of a parent of a toddler, so I know the experiences of a parent with a child or teenager with celiac disease will be different. I see you too. It’s not easy. For N, she seems to understand the idea that before she felt sick, but now eating gluten free, she feels better, and she wants to feel better! Even so, she has her moments where I’ve seen a wave of sadness come over her face. One actually happened on another Target trip when there was another child eating a cake pop right in front of her. She looked at me and frowned and her lip quivered like she was going to cry. It broke my heart.

In those moments, I acknowledge and reflect her feelings. I can’t fix it, but I teach her that all of her feelings are valid and respected. I said something along the lines of “I know, you’re sad and disappointed. You wanted a cake pop too. Do you need a hug?” That time, she gave me the hug and was ready to move on. I know I need to be prepared for more of these moments as she gets older and becomes involved in school and extracurricular activities. Which comes back to “honor your feelings” and take care of yourself so that you can take care of your child from a place of calm. We’re in this together!

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Find Support

Find a local resource through ROCK (Raising our Celiac Kids) and the National Celiac Association.

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