It might only be the end of January, but love is already in the air. As you might be learning, when you live with food allergies planning for holidays is an essential part of life.
Valentine’s Day is a day to celebrate the love and friendships we have. We mark this occasion with special dinners (not always allergen friendly), flowers (that make some people sneeze), stuffed animals (AKA a dust mite house), and candy (often containing a top 8 food allergen).
It can be hard to love a holiday that is so hyper-focused on traditions that can leave you feeling anxious, itchy, or worse. But, with some thoughtfulness and flexibility, we can make our Valentine’s Day plans safe and enjoyable.
If your child is the one with food allergies, it is important to find out what events, activities, and treats the school plans to have.
Check-in with your child’s classroom teacher. In my experience, they are the best point of contact because they know celebration plans for the classroom as well as any school-wide plans.
Check-in with the PTA. Your classroom teacher may be unaware of the PTA’s activities and events, it is important to contact them as well.
Kindly ask questions to make sure the plans are safe for your child. Remain reasonable and work together to adjust any potential risk spots.
Offer to help! Giving your support both in ideas and time always eases the stress for everyone involved.
Remember, often, the school staff and the PTA don’t manage food allergies day in and day out in the same capacity we do. Use this opportunity to share your knowledge and make the environment safer for not just your child but all those with food allergies. You can positively impact the culture of the school.
Here are a few other tips on working with the school:
Some schools choose not to have any food or candy-related items for celebrations. Find out your school guidelines on this before you start trying to fix a problem that might not exist.
When asking questions to the teacher and/or PTA, keep in mind that some art and science-based activities contain food. Ask about this directly! (Experience has shown me that when you ask about food, people are thinking about food getting consumed, not about hidden food proteins in other activities.)
Know what boundaries need to be in place for safety. For example, we don’t need to exclude all of Shaun’s allergens from the classroom to keep him safe. If the celebration includes fruit and yogurt, we have precautions in place to keep his food separate, provide him with a yogurt alternative, clean his eating area before he sits to eat and post snack clean up of surfaces and hands. Some people’s food allergy needs require stricter boundaries; Know your needs and advocate to have the boundaries in place.
Non-Food Valentine’s Fun
These days giving experiences as a gift is hugely popular – and I get it! It emphasizes spending time together, communicating, and making memories! While downplaying material things that clutter our lives.
Here are some great, allergy-friendly, low-cost activities you can plan as part of your Valentine’s Day activities that don’t include food!
Hand Made Crafts
Books about Kindness and Love
Community Kindness Acts
A simple internet search will reveal a tremendous amount of ideas for clever, non-food Valentine’s Day treats. These are some of my favorite’s:
Stickers – “Valentine, I’m stuck on you!”
Crayons – “Color your heart out, Valentine!”
Bubbles – “Your sweetness blows me away!”
Watercolors – “Hope you have a colorful Valentine’s Day!”
Glow sticks – “You make my heart glow!”
Rubber Ducks- “I’m a lucky duck to have a friend like you!”
Bouncy balls– “Valentine, you make my heart bounce!”
Pencils– “Write on Valentine!”
Although I have focused a lot on non-food options, creating safe and yummy meals and treats for Valentine’s Day is legitimate and encouraged. But even us food allergy folks can get caught up in being food-centric, and I wanted to show the variety of celebratory options beyond food.
Also, if you still want to share candy as part of your Valentine’s Day celebration, try to see out an allergy-friendly option. (Just a reminder always read every label every time, even with an allergy-friendly company!)
In the 5 short years of my little guy’s life, Shaun has shown a fierce desire to gain his independence at every milestone. Yes, he has a long way to go until he is ready to navigate this crazy world. Yet he is continually stretching the boundaries, reaching for as much independence as he can grasp. While John and I left, attempting to figure out what is safe and appropriate for him, given his personality, age, and food allergies.
During grade school, the mother of a friend I had would always say things like, “I don’t know how I feel about you going on the upcoming school field trip … I don’t think that the umbilical cord stretches that far.”
As a young girl, we all laughed at these comments.
As a mom, I understand the conflict at the core of these words.
As a food allergy mom, my heart knows increased fear that adds depth to the sentiment.
From the day they are born, children are always moving toward becoming independent! That is the natural way of things.
And although it is my job, as Shaun’s mother, to teach him, prepare him and let him go. This progression brings a cliche, feeling of bittersweet.
Bitter because I want to protect him, to keep him little because some days (even though I savor each moment), he is just growing up too fast.
Sweet because I am excited and proud as he learns who he is and all the adventures he wants to take.
But deeper than this is the fear of letting go because of his food allergies:
However, if I let those feelings dictate my actions, I am only going to struggle more in the long run. But more importantly, Shaun will be affected by these misguided actions.
This is where I have to be specific in my thinking.
The clearest example of this in my experience so far is Shaun starting school.
Before School: Shaun spent his days with his Mimi and me. It was an awesome setup, my mother and I were running a home child care out of her house.
I was able to watch Shaun grow and develop. He was getting daily socialization. I got to enjoy snuggles and giggles. I cherished this time with him!
Beyond the feel-good stuff of this setup, when Shaun’s (2 months old) eczema began, I was able to FULLY engage in the day to day needs of diagnosis and subsequent food allergy journey.
– Endless doctors appointments
– Extensive topical skincare
– Research and multiple opinions
– Daily doctor communication
– Nursing on a restricted diet for 2 years
– Skin prick tests
– Blood Labs
– Careful, food introduction
– Managing every hive-y face
– Always having epinephrine & safe food
– Keeping meticulous notes and food records
– Inhalers, antihistamines, antacids
When you care for a child in this constant capacity, knowing the risks to their life that exist outside your carefully curated environment, it feels impossible to let someone take over the care of your child. Never mind for 5 days a week for 7 hours a day.
For a long time, when I thought of sending Shaun to school, I felt utterly sick.
And this is where I have to be purposeful about my thinking.
As parents, it is easy to choose what is convenient, what feels good and is easy for us at the detriment of the child. (Even if the impact of these choices is only seen years in the future)
Restricting experiences, out of fear, is only going to cause struggles, anxiety, and frustration when it is ultimately time take that next step.
So despite fear, choose to:
Evaluate each circumstance individually for risk. (Some situations are just not safe yet – saying no to them is okay. As long as you have been thoughtful and the choice was not made out of fear alone)
Make plans and adaptations that will reduce risk when possible.
Take baby steps leading up to a big independence milestone
Educate and set expectations!! (This includes, your child, other family or anyone who is going to be involved with this new independence)
Learning to let your child go is always complicated and emotional. But letting go little by little; Saying YES to experiences leading up to a significant milestone will prepare you, but more importantly, your child to be successful and safe. Which is what I think all parents want for their child.
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You are kind and understanding. Yet I hesitate to write this because experience has taught me that even the kindest people sometimes struggle to fully grasp what I am about to share.
You see, I am not just a mom; I am a food allergy mom.
And that comes with a tremendous amount of constant care you can’t truly understand until you hold the title.
“Food allergy mom” was not a line item that I ever expected to add to my life’s resume … but here I am.
Why does this matter?
How we treat each other matters. Without being aware that I live with food allergies and what that looks like, it might cause friction in our daily interactions.
Sharing this part of my life with you will help us to strengthen our accord.
Your benefit: a deeper understanding of my life and an opportunity to act with compassion.
My benefit: being fully seen and loved in a reality where simple food is life-threatening to my child.
You can’t know what you don’t know. I get that … It would be unreasonable for me to expect you to be aware and understanding of food allergies when you have never truly been exposed to their reality.
So here is a glimpse of reality …
It is learning how to read labels … every single time you purchase a product.
It is knowing that sometimes milk is not called milk or that a company doesn’t have to disclose sesame oil in a product as long as the ingredients say natural flavors.
It is spending hours in a grocery store and coming out with no new food options
It’s about learning all the places food proteins hide. Because they commonly exist in non-food products. That means hand soaps, art supplies, makeup, beard oil, house cleaner, toothpaste, to name a few.
It is countless hours with doctors looking at test results that can’t tell you the severity of a potential reaction because the test only measures how likely it is that a reaction would occur.
It is scouring the internet at all hours of the night looking for answers.
It is learning how to cook again and rethinking all your habits in the kitchen because a single mistake can lead to cross-contact making food unsafe, even life-threatening.
It’s trying to inform your family, friends, co-workers, teachers what your needs are, making sure to be clear and accurate, without scaring them but without coming across as crazy and overbearing.
It is about kindly speaking up to educate someone when all you want to do is scream, “what are you doing?! that could kill my child!”
It is learning the many ways anaphylaxis looks and how to respond when the day comes that you see it.
It is finding accessible and affordable epinephrine, the medication that saves lives.
It is praying that you never have to use it.
It is about NEVER leaving home empty-handed. But instead with bags of stuff: auto-injectors, antihistamine, inhalers, wipes, extra clothes, and food!
It is about always mitigating risk. At the park, the library, the museum, the family picnic, the birthday party, the bus, the baseball game, the grocery store (literally everywhere)
It is about teaching my child to be aware of and respect his allergies. To advocate and speak up. Without making him scared, anxious, or feel less than and left out.
It’s about finding people who understand food allergy life and cherishing them.
It is about finding a place between fear and complacency so you can live life but maintain a level of protection.
It is about all of these things and SO MUCH MORE.
I often operate in the space of fear and anxiety, which is why sometimes I come across as unreasonable, overprotective, and maybe even a little crazy.
I spend a lot of energy pushing outside that fear because it is the only way to experience life. But some days it’s harder than others.
I hope you can empathize with the care it takes and the anxiety that comes with managing food allergies.
And maybe you value me enough to be mindful of your words and actions …
Here are 2 simple ways to accomplish that:
Don’t assume …
That this is a lifestyle choice, it has changed our lifestyle, but it was not a choice.
That a small amount of the allergen is okay, it’s NOT. Even trace amounts of food protein can trigger anaphylaxis.
That because you read a news headline you’re informed. Food allergies are multi-faceted. I promise it is more complicated than the headline. (I will know immediately if you actually read the body of the article)
Food allergies are the same as an intolerance … they are not!
That you need to suggest ideas to help. I know your desire to offer solutions is coming from a good place, but it just makes me feel more isolated.
Ask questions …
Can I do anything to make things safer for you?
Where do you keep your auto-injector? Can you show me how to use it?
Would you like to pick the restaurant?
Do you have any treatment options?
Where can I get useful information about food allergies?
Are you okay?
This is a lot to take in! It probably feels like too much … at least that’s how I felt when I found out I was a food allergy mom.
With time and practice, it feels more manageable.
Food allergies will always require extra care, but one day you will look up and realize you automatically account for them. With no cure at this time and anaphylactic episodes on the rise, your awareness and compassion are more important than I can express.
I sincerely hope this has not scared you away. In fact, quite the opposite!
I shared this to provide perspective to empower you as you encounter food allergies and anaphylaxis.
Now you have the information it’s your choice how to use it.
A little over a week ago Shaun had his summer visit to his allergist. At this point, we typically check-in 4 times a year (not including food challenges or sick visits) with the intention of looking at his allergies, asthma and eczema condition. This allows us to make any changes to his care plan that are needed and keep him up to date with challenges and therapies that would open up Shaun’s diet.
I spent the afternoon before his appointment gathering my thoughts, paperwork, and questions. I am aware that this preparation** takes extra time, time that we could use for 1,000 other things we need to be doing. (I left our family cottage early to come home and make sure things were in order for our time with Dr. H) But experience is an excellent teacher, and I know how critical it is to show up prepared for these appointments!
** Prep work is a theme of allergy life! Food prep, planning meals and grocery shopping, extra vacation prep, food product research, prep a separate lunch for a family outing, prep for the beach or the baseball game … I could go on. Prep work is another insurance policy, paid for with upfront time, that makes allergy life manageable and ultimately safer!
At the beginning of the appointment, a medical assistant always takes Shaun’s height and weight. And I am excited to announce that Shaun officially weighs 30lbs!!! I know, 30 lbs, it seems silly but for half of his little life, we have spent countless hours focusing and stressing over his growth. He was born small but shortly after his eczema started we began to notice he had fallen off his growth curve. Shaun’s pediatrician and allergist referred us to the pediatric GI & nutrition practice leading us on a 3-year journey that I will share with you another time. But I tell you all this because 30lbs is a big win for us, in fact, we might even throw a party!
With the appointment off to a great start, we dove into the state of Shaun’s asthma and eczema. Dr. H was happy to see and hear that it’s well managed currently and recommend that we just continue our current care plan. I’m not going to lie, it took a long time to get to a place where the care plan didn’t change with every doctor visit but here we are, no changes to the care plan and it feels really good.
Next up, allergies! Dr. H suggests we use the appointment to look at Shaun’s environmental allergies. It had been a while and given his struggle this past spring she wanted to have more recent data in his chart. So we agreed to do an environmental skin panel and would test his food allergies by blood work (adding his food allergies to the skin panel would have been a lot given the environmental panel required 24 skin pricks).
This was the part of the appointment I was grateful to have John with me! Shaun is now old enough to know what was about to happen and he got incredibly upset. I held Shaun until they were ready to apply the skin test. Then I was able to pass him to John who could hold him tightly enough to give the staff a chance to administer the test.
Is it hard to watch your child freak out and scream and squirm because they are upset by the skin test?
Yes, it is horribly hard and frankly heartbreaking.
But I am an adult. And I know that this test, although momentarily uncomfortable and upsetting (for him and me), will yield valuable information. Information that will help us as we continue to expand his world!
So despite the screams forcing their way out of his little body, we move forward with the test. It is important.
Once the test has been administered to his skin we do our best to comfort him as we wait the required 15 minutes for his body to react. A nigh-night (blankie/woobie/etc.), dum dum pop, a YouTube video about buoyancy and density (following up on some concepts we discussed while at the ocean) and he was calmer and we were ready for Dr. H to look at his skin.
We lifted his shirt and I laughed a little … because sometimes in life it’s laugh or cry.
An untrained eye could have looked at Shaun’s back and known that he is allergic to almost every environmental stimulus they tested him for.
And even though I anticipated this result before we arrived for the appointment, there is something that sinks inside you when you see it painted in bright red and white splotches on your child back.
Knowing this did give us the opportunity to discuss the possible benefits of allergy shots for Shaun and what that entails. So we will take the information given to us, by Dr. H, do more research and talk with Shaun about if this is something we want to start with him. This therapy is not comfortable short term (who wants to go get weekly shots?) but might provide him major relief long-term.
We wrapped up our appointment by verifying the prescription refills he needs, getting hard copies of the necessary school forms for September and leaving with a lab order for blood work.
Overall, it was a great appointment. We were able to cover everything we needed to discuss. We gathered updated information about Shaun’s current response to environmental allergies and we left with the forms and medications we need until we return in November.
I’m so grateful for Dr. H and the staff at CTA&A. I know Shaun has the best care! And as an allergy mom, I can’t ask for anything more.
To great doctors,
P.S. – (Is a ps a thing in a blog?) Shaun and I went this week to get his blood work done. The screams were worse than the skin test but we both survived. Nothing a game of mini-golf can’t fix! Results will be in soon, I will keep you posted!
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In January of 2017, Shaun accompanied me on our weekly trip to the grocery store. As we made our way through the produce section, we began our usual conversation about what foods are Shaun Safe and what foods are not. (Although Shaun was only two years old I believe these conversations were/are critical to helping him learn about navigating his allergies.)
Me: Shaun, what are these?
Shaun: Kiwi, I’m allergic.
Me: Great! And what did momma just put in this bag?
Shaun: Cucumbers, I love cucumbers. They are Shaun safe!
Me: I love cucumbers too. Okay now, what do you see over there?
Shaun: Peanuts and Tree Nuts! Not Safe! I am allergic!
A woman in the produce section with us overheard our conversation. She stopped me to ask about what Shaun’s allergies were. I proceed to share Shaun’s allergy list with her. She seemed surprisingly unfazed by the long list of things we avoid, but I was grateful that she showed an interest in food allergies.
What happened next though threw me for a loop!
She continued the conversation by telling me that it was a shame that Shaun had missed the newest development in the medical food allergy world. She wanted me to know that it had been all over the news and social media that “early introduction” to allergens such as peanuts would prevent food allergies.
I smiled at her and thanked her for the information. I know that this lady was trying to be kind, that her ignorance was due to lack of experience and knowledge, but at that moment, I felt alone, misunderstood, angry, and sad. It bubbled up all the emotions that I should have done more for my child, even though I knew that I had done everything I possibly could!
Okay, let’s break this down.
I was aware of the new guidelines that the NIAID had adopted regarding the early introduction of peanuts.
I was aware of how headlines around this gave an inaccurate picture of the depth and details within the actual guidelines. (This conversation was confirming that)
I was aware that although the NIAID was releasing the guideline now in 2017, Shaun’s allergist recommended early introduction in 2015; however, Shaun was not eligible!
For the record, according to the guidelines Shaun’s eczema would have put him in the high-risk category for a peanut allergy. As the guidelines suggested, we talked with all the doctors caring for Shaun and decided that we would introduce peanut immediately as long as he showed no signs of reaction based on both skin tests & IgE blood work. Unfortunately, he was already reactive to the peanut proteins, so strict avoidance was recommended until he is old enough for us to consider immunotherapy (which is a post for another day but something we hope to take advantage of!)
Below are some ideas to consider if you ever find yourself on either side of this interaction.
To anyone, not living with allergies, who find themselves in the position of the lady in the store:
Please be careful not to think that I, or any allergy, parent, could have avoided this allergy by exposing my child younger. If I could have … I would have, but it wasn’t an option for us.
Read more than just the headlines! Food Allergies are complicated, and there is often critical information that is found in the body of the article or in the research that provides a complete understanding.
If you engage a food allergy person to listen to them. You will learn! (If grocery store lady asked me if I heard the new guidelines or what I thought of them she would have learned something new!)
It is always safe to offer a statement of support, hope, or praise! (The grocery store lady would have made my day if she told me she was impressed that I was teaching my son how to take care of himself!)
To anyone, living with allergies, who find themselves confronted by the lady in the store:
Take a deep breath!
Assess if you can use this moment as an opportunity to share and spread awareness.
Remember how little you knew about allergy life before you were forced to live it. Think about how long it took you to learn it well. Not all people live with food allergies, and unless you do, you can’t understand one hundred percent of it. So be informative and kind! This will help grow awareness and a positive name for the allergy community at large!
You will encounter people like this at times, and it can weigh you down emotionally. Rely on the people in your life who DO understand; Allow them to be a balance point!
You are doing a great job! And if you don’t have someone to tell you that email us! We know the value of support from people who live this life and want to share that with you too!
Living well with food allergies is really about keeping perspective and understanding that a lot of the ignorance towards our community comes from lack of information and exposure. So let’s share information and be open to letting people see our life with a hope that in time, people’s grocery store conversations will sound different than the one I had that winter day in 2017.
To keeping perspective,
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