I woke up in the morning from a long, full night of sleep. There was screaming in the other room and I knew it wasn’t Dylan in his crib calling for me; this was different. He was 9 months old and this was the first time he slept through the night.
Why was his screaming so frightening?
I ran into the room and there he was, eyes swollen shut, arms reaching out for help, and of course, I KNEW; this was my first real-life experience with anaphylaxis.
Later that day after his first blood test, which he took like a champ, we found out the results. Food Allergies: Peanuts, Walnuts, Wheat, Eggs, Milk, Oats, and Corn.
To start at the beginning, when Dylan was little he didn’t sleep well; not like how babies don’t sleep well, he literally didn’t sleep. He always seemed uncomfortable and cried ALL.THE.TIME. He had rashes on his skin, he looked as though he was swollen, his cheeks were bright red, the top of his head was scaley, and his skin was dry and itchy. Dylan wasn’t a thrilled little guy.
At three weeks old we had Dylan on formula because the doctor thought he had an allergy of some sort. After testing many formulas we landed on ‘Puramino’, which cost us around $600/month and was only available on Amazon at the time.
When we began to introduce food (pureed), we quickly found that he was allergic to oatmeal and then realized that we were using Aveeno products on his skin, which contributed to his uncomfortable looking appearance. (Bye-bye Oatmeal products).
When we wanted to start solid food, we started with soft premade Ravioli. He was around nine months old. Dylan loved the Ravioli but after five minutes of eating, he started to cough. Immediately I knew – this was an allergy.
I quickly administered Benadryl (not knowing much about food allergies first hand) and it ‘helped’. Once he drifted off to sleep, I checked on him every three minutes for two hours. He seemed fine – phew!
The next morning our lives forever changed. (see above)
For those of you who have never experienced this before, will hopefully NEVER know what it’s like.
I’m thankful to have my son grow up in a time where there is more awareness around food allergies, not because I would wish this fear on any person in the world, but because people are beginning to understand how scary this reality is for many families.
The problem with having more awareness and understanding of food allergies is that many people are resistant to helping create an inclusive world.
Parents of kids with food allergies lead very different lives and others aren’t aware of our scary reality. It’s hard to even put into words let alone bring you to the places our minds go.
Things do become a lot more tolerable for us when you, the other parent, make the effort to understand our reality. It makes an impact when you help guide your children on the path of understanding how important it is to be mindful and inclusive.
The problem is, with this awareness being focal, there is an incredible amount of misunderstanding.
I could see that it could be frustrating to have things show up on your social media feed or receive an email from school administration about a child in the class with food allergies. It sometimes causes people to resist.
You are just trying to be the best parent you can to your child and you have A LOT going on. Making peanut butter and jelly is just easy and you have a picky eater anyway, right?
I hear you, I really do, however, food allergies aren’t something we choose, we don’t have the luxury of choice. Anaphylaxis is real, and I mean shit gets real –
“You’ll never know how hard it is to answer the operator on the line to “911 what’s your emergency” until you have to do it for your baby || Feeling pretty overwhelmed today and sad for our little guy || allergies and hospitals are not fun || he’s such a trooper || #overwhelmed “
What’s tricky is, food allergy parents sometimes don’t take enough time to help others understand. Many food allergy parents don’t put themselves in other parent’s shoes, but they are asking others to empathize with them.
If you know an allergy parent or you don’t quite understand, here are some small things we, the food allergy parents, want you to know.
1. We appreciate it when you ask questions and when you are behind us.
“You have our full support in caring for Dylan and your family. We have known about Dylan’s sensitivities and do appreciate the clear reminder.”
“First, I admire your bravery – both for sending Dylan to the school he loves with such a tricky and scary thing to navigate…”
“Being part of a school community means caring and feeling compassion for our friends and those around us. And to treat others how you would hope to be treated. These are basic values I want my kids to learn. I would hate for Dylan or any other child to feel left out or excluded especially when there are easy ways to avoid it. That’s not something I want to be a part of. So if there is anything we can do, please let me know.”
2. Not as many people as you think are sensitive to food allergy accommodations.
Food allergies are not a choice we’ve made. It terrifies us to receive emails from parents, no matter how polite, stating the belief that their child shouldn’t have to accommodate ours. Which by the way, the ADA recognizes Food Allergies as a disability for a reason so accommodations under federal law must be made.
“I will say, just to be honest, that in the past when my daughter brought home gluten-free treats she did not like them and threw them away. I do think that Dylan should be able to participate and have his own treats but I also think the other children should be able to have the treats that make sense for them.”
3. Be mindful with your words. This isn’t a ‘lifestyle’ choice.
Yes. In both the ADA and Section 504, a person with a disability is someone who has a physical or mental impairment that seriously limits one or more major life activities, or who is regarded as having such impairments. Food allergies are considered disabilities under the ADA.
You wouldn’t write to someone with cerebral palsy or down syndrome in such a way, would you?
“Unfortunately, part of the lifestyle of someone with severe allergies is they will have to learn that they may have different environments than other children and/or might not be able to participate in everything. I have many friends who are teachers in both public and private settings, in districts across the country. Schools will always provide a safe environment for each individual student but they do not have that specific students accommodations impact the classroom at large. “
Schools across the country DO make accommodations and some do affect the class ‘at large’. Using different moulding clay, using safe ingredients in cooking class, not allowing food in classrooms, providing safe school lunches for children with food allergies etc. These are not accommodations that hurt anyone else in the classroom but they allow for an inclusive environment. No child knows the difference between “Play-Doh'” and “Crayola Moulding Clay” (except that moulding clay is easier to use and doesn’t smell).
These aren’t hindrances to other children being able to learn. Look at it this way; we are ‘levelling the playing field’ for kids with food allergies just as we do with any other ADA accommodation. It’s not a hard concept to grasp but people are completely unaware that THIS IS THE UNITED STATES LAW.
4. We don’t want our children left out just as much as you don’t.
See above. Would it hurt your feelings if I suggested that your child might not be able to participate in everything? It would, I know because I’ve done it, and I proved my point well.
It’s heartbreaking to watch my son explain that he has special treats at home that his mom made just for him when kids at the community park are indulging while playing at the weekly Friday block party.
5. We want you to know, we aren’t trying to be rude when excluding ourselves from birthday parties, events, parks, playgrounds, or any other social gatherings. We also aren’t trying to ruin these events for you.
Here’s the thing, we can’t eat what you’ve provided at the party, we act like helicopter parents, we have long-winded conversations with our babies before we arrive about not eating other peoples food, and we hold our breath at every move they make.
On top of it all, when other parents aren’t sensitive to food allergies, we are excluded anyway. Parents are passing around the brownies and we have to say “No thank you”, and then we have to turn to our baby and explain why every other child gets a treat but they don’t.
Try doing it every.single.day.
6. We want you to know that just because you know someone, even a family member with food allergies, it’s not the same as if it were your own child.
The love you have for your child is very different than that of any other human on the planet. You know it’s not the same.
“I was thinking about how I would react if I were in your shoes, given what I’ve witnessed watching my brother grow up with allergies and how my family handled it, and I honestly think the best thing to do is provide a safe individual environment for the child to participate in activities with food/product that won’t endanger them, but measures put in place for that one child should not affect other children.”
7. Yes, we have our Epi-pen, but no, we don’t want to use it!
Epinephrine is for emergencies only. I hope that we never have to use one. Epinephrine helps but it isn’t a guarantee. Don’t forget, there is no cure for Food Allergies, if there was, don’t you think we’d do everything in our power to have access to it?
8. We want you to know, we appreciate the questions, but please try to retain the information.
Like I said, we live in a world that is more sensitive than ever to food allergies, but Peanut Butter isn’t the only allergy there is. The schools “nut free environment” doesn’t cover my son’s wheat, eggs, oats, etc.
No, I don’t know if he’ll grow out of his food allergies, and no, it’s not common to grow out of all the allergies he has. If I had a crystal ball I’d love to see the answer just as much as you ask me.
It IS possible to make meals without allergens, so don’t insult our intelligence by saying you won’t be able to feed your children if you can’t make egg salad sandwiches or PB&J.
Be honest, you don’t want to.
Remember, you have a CHOICE, our kids don’t and as parent’s, we don’t either.
9. Everything is hard.
Play dates, eating out, travelling, packing, making appointments, and anything you can do normally is very hard for us.
We can’t just pick up and go with a few snacks. We plan everything around when we eat because there are not options for us. We have to pack a cooler everywhere we go, remember the Epi-pens, Benadryl, Cortisone, and phone chargers.
It’s not easy to drive thru, or “grab a bite”.
10. Please help teach kindness.
Please be kind. Please try. If we’re truly “all in this together”, we need you to be on our side, not just for us, but for our kids too!
Being a food allergy parent is harder then you could ever imagine. You have the power to help us, so why not use it?
Befriend someone with food allergies and try to understand their world. It makes a big difference.