I remember the first time I ordered food for my son in a restaurant. First of all, I was terrified.
Second of all, I was pretty new to the food allergy advocacy world. I was still trying to figure out what I even needed to ask for and I had not had a lot of practice yet. When I tried to explain what we needed to people, my words felt as clumsy as a baby deer who was learning to walk.
My family went at an off-time so that it wasn’t super busy. We had our emergency plan and EpiPen. I knew that I wanted to speak with the chef directly.
I took a deep breath, looked the waiter in the eye, and explained that we had several serious food allergies and that I would like to speak with the chef.
To my relief, I was not argued with and the waiter went to get the chef. The chef might as well have been an angel from the Lord.
She could tell I was nervous and patiently listened as I explained what we needed.
She gave me a couple options that she said she would be happy to whip up for my son, and I agreed – fresh chicken strips and fruit.
I handed the menu back to the angel, I mean the chef, and as she took it back she said, “I want you to know my daughter has 23 food allergies and I’ve cooked for her her whole life. I’ll be sure to take care of your son.”
As I sat at the table
ugly-crying delicately dabbing my eyes with a napkin, I felt a huge sense of relief. There were other people who could help us. I just needed to keep advocating.
Why Do I Feel Like Apologizing?
In other situations though, whether it’s setting up a playdate, asking people to wash hands at our home, or navigating various social settings, I’ve noticed that when I ask people to help, I feel like I need to apologize. Why? What is that? Have you caught yourself feeling that way too?
After reflecting on this, I realized that at its core, I feel like an inconvenience. I feel like our family is burdening other families somehow.
Woah. Where is that coming from? That is certainly not how I want my son to feel when he needs to advocate for himself when he is older.
He is most certainly not an inconvenience. He is not a burden.
Food allergies are a serious medical condition. They are not a dietary preference. They are not a food fad. The terrifying reality is that they can have life-threatening consequences.
When you advocate for necessary precautions for your child’s safety, you are not being high maintenance, difficult, or a burden. And neither is your child.
You do not need to apologize for advocacy.
Logically, I know this. Yet I still find myself a bit uncomfortable when advocating.
I am determined to work through this. My motivation for working through these feelings and getting more comfortable advocating is because I know it directly impacts my son.
How We Handle Advocacy Now Will Shape How Our Kids Will Advocate in the Future
If I am constantly apologizing for our food allergies, for asking people to wash their hands, or having to ask for what we need, what message does this send to my son?
How will this build his confidence that it’s okay to ask and that it’s okay to advocate?
Again, this is a medical issue. Food allergies are no one’s fault. Not yours. Not your child’s.
What Do You Actually Need to Advocate For?
In the early days of being a food allergy mom, I had no idea what I even needed to do to protect my son.
What can be very difficult, especially in the beginning, is sorting through actual medical need and your own anxiety.
My son was diagnosed with peanut and tree nut allergies as an infant. What I wanted to do was take a flame thrower and rid the world of all peanuts and tree nuts.
That’s what my anxiety wants to do. Rid the world of all the nuts. It seems perfectly reasonable.
Alas, we all know this is not the solution. Of course this is what I wanted to do and who could blame me? You may have felt this way too about your child’s specific allergens.
However, what’s challenging is sorting through what do I actually need to do to keep my child safe. The world is not nut free (or dairy free, egg free, and so forth). So how do we interact in it?
What We Advocate For
Here are few lines in the sand that our family has drawn based on my son’s specific needs balanced with our own comfort level.
1. When people come over to our home, we ask them to do 3 simple things:
Take their shoes off, wash their hands, and not to bring food in unless we’ve previously discussed it. We currently keep our home completely nut free.
2. We ask people to not actively be eating our allergens while we are hanging out.
For example, when our kids have playdates, we ask the other parent to bring nut free snacks or we offer to provide the snacks. That way, the other kids are not actively eating nuts while we are together.
This is due to my kids still being little (which means their friends are also little) and the littles just tend to be messy eaters, food on hands, faces, clothes, etc. It exceeds our comfort level for my son’s safety at this stage.
This also applies to family gatherings. I know this can get complicated over the holidays, but in our circumstance, my son gets hives just from contact. It is way too easy for someone at a family gathering to eat a nut desert bar and then touch my son. That isn’t fair to my son and is a huge stress for us. This is outside of our comfort zone. And because we do hold to that, we usually host and prepare the food instead of asking someone else to do that.
When this isn’t an option, bringing your own safe food is another option that can work well!
3. We advocate for washing hands if necessary.
Here are a couple scenarios where this has come up. If I see a child entering my son’s class (sports, church, etc.) with food on their face or hands, I ask the other parent for help. I politely explain our situation and ask if they could have their kiddo wash up.
If the neighbor kids come running over to play and I can tell they have food on their hands, I ask them to quickly wash up. We have a Suds2Go which makes this SO easy because I have the bottle with soap and water right there.
4. If we see a substance on the surface, we wipe it up.
We bring wipes basically everywhere. If I see food on the playground, I wipe it up. When we go to sit somewhere and I see weird stuff on the surface, I wipe it up.
Usually, there is no one to advocate to for this because I can just do it on my own. But occasionally, I run into it where I see an opportunity to explain.
For example, my daughter was at ballet class last week and my son and I were watching. A gentleman brought my son a chair to sit on and I could see crumbs on it so I wanted to wipe it down.
In that scenario, I felt like just wiping it down without an explanation was a bit weird so I thanked the man for bringing the chair. As I began wiping it down, I just said we have food allergies and just needed to wipe the food off quick.
I joked with him that I wasn’t wiping it down because of him!
He laughed and encouraged me that he took no offense and actually began asking some questions about food allergies. We wound up having a great conversation.
Katie has also experienced this in different settings.
Once, her family flew to Texas for a wedding. When they boarded, Katie wiped down the airline seats and trays with wet wipes. Her daughter wore a light jacket with a hood and long pants to protect her skin. Katie even went as far as to tuck a sheet around the actual airline chair for her daughter to sit in.
Yes, she got a lot of looks. But it worked! It was what they needed at the time and the airline flight crew did a great job in being supportive and asking what they needed.
The staff even told Katie a tip for the next time her family was to travel. They told her to call ahead of time and notify the airline of the allergies and notify them again at the gate so that her family could board early.
Katie didn’t know that she could even advocate for that and was empowered to do so in the future.
5. We don’t let people give food to our children.
This is one of my family’s food rules. My kids know not to take food from anyone except their designated food people which currently are myself, my husband, and Katie.
As their environments change, this will also change, but the purpose is that they do not take and eat food from someone who is not very aware of their allergy needs.
My son is highly sensitive to his allergens so cross-contact is a concern for us. For our family, this means we do not eat food prepared on shared lines with his allergens.
Unfortunately, food companies are not required to label for shared lines. This makes label reading a bit more complicated than simply checking the label for peanuts or tree nuts, which is why we have the designated food person rule.
For more on food labels, check out our post, Food Labels and Food Allergies
And for more reading on cross-contact, check out our post, What in the World is Food Cross-Contact?
6. School Advocacy
My kiddos are not in school yet but here are some suggestions for how to advocate in schools. 13 Food Allergy Back to School Tips
What We Don’t Advocate For
One thing we personally do not advocate for is to ask other families to make their child’s birthday allergen-free specifically for us. The reason being is this is an event that we are not hosting; we were invited.
The event is not for our child, it is for their child.
That said, we do reserve the right to decide whether or not we will attend. Like I mention below, my friends wanted to accommodate us, which meant so much. When you find friends like that, hold onto them and invest in those relationships.
Here are a few ideas we recommend for inclusion at other kids’ birthday parties.
- Bring your child’s own food/dessert
- Ask the host if kids could wash hands after eating (perhaps even offer to be in charge of this)
- Depending on the relationship, offer to help with the food and/or the party
- If the party is outside of your family’s comfort zone, setup another time to get the kids together to celebrate!
Another thing we do not advocate for is an allergen-free social gathering when we are not the host. I’ll add a note that I’m not referring to close family gatherings.
For example, my son’s martial arts center was hosting a 600+ person BBQ. I am not in charge of that event and therefore I’m not in charge of the food.
In this scenario, I would talk with the coordinator so that I have an awareness of what is being served. I would bring my family’s food regardless, but I like to know what is being served so that we can make a judgment call about our comfort level on attending and to reduce surprises.
We would also bring our Suds2Go so we can wash our hands and of course, we always bring our EpiPens and emergency care plan.
What I’ve Learned
One of the biggest things that I hope that you hear from me is that more people are willing to help than not. There is always the person that might give you a hard time, and to be frank, that’s on that person.
But more often than not, people want to help. The challenge is people don’t know what they don’t know. And when you haven’t actually lived life navigating food allergies, there’s just a lot that you don’t know.
There are things that I never would have thought of before my son’s diagnosis. Think about how much you have learned since your child’s diagnosis.
Without advocacy, people don’t know how to help.
For example, one of my friends was throwing a birthday party for two of her kids. We were hanging out and she (unprompted by me) said she wanted it to be nut free for my kids, but she was nervous about baking the dessert.
She said, “Seriously, we can handle not having peanut butter for 2 hours. I want you guys to be able relax.”
I could have cried. She was so thoughtful.
However, for her own’ child’s birthday party, she does not need the stress of cooking a safe dessert for my kids and worrying about triggering a reaction. She bakes a lot with nut products and was worried about cross-contact from her dishes, choosing a brand with cross-contact issues, etc.
I told her she didn’t need to focus on that and that I could make a safe dessert for my kids. She was relieved and said she just wanted to do chocolate cupcakes for her kids, so I made matching cupcakes for my kids that I knew were safe.
My friend also wanted a menu that was nut free, so we worked on the food together so that no nuts were served at the party.
She did not need to do that, and I would not have asked her to do that, because it was her kids’ party. But because we are friends and she has learned about food allergies through us, she wanted to.
Everyone Has Challenges
One thing that I really want my kids to grow up knowing is that everyone has challenges. Everyone.
Food allergies just happens to be one of theirs.
I want to be clear, this is NOT to undermine the difficulty of navigating life with food allergies. I have often heard comments that begin with “Well, at least it’s not,” and then fill in the blank. Comparing people’s challenges as if it’s a “who has it worse” contest doesn’t help anyone.
I also want to be clear, I’m not ok that my kids have food allergies. They are a terrible medical condition and I want so badly for there to be a cure.
What I want my kids to know though, is that they are not alone in having challenges. Food allergies can feel isolating, like you are the only one dealing with this in different settings.
We know that’s not true. In the United States alone, there are millions of kids living with food allergies, the actual statistic is 1 in 13 kids.
Life’s challenges are one of the ways we grow mentally and emotionally stronger as people. I love this article from Allergic Living titled, “The Surprising Side Effect of Food Allergies: Confidence.“
In the article, the author lists 10 traits she has seen in kids with food allergies. These are character strengths that will serve our kids well in life.
Advocacy is a huge part of developing these character traits.
When I advocate with confidence, composure, and tact, it’s being modeled to my son. When I model that it’s ok to leave or not go to an environment where we do not feel safe, this teaches him to do so too. If I remain firm about our boundaries and do not shy away from asking questions about how the food was prepared, my son sees this too.
I will not apologize for our food allergies.
Katie and I will be here in your corner, cheering you and your family on.
Leave a Reply