In true awareness fashion, Anna was diagnosed with new allergies this week including tomato, onion, celery, green peas, cilantro, and coriander. Excuse me while I go stick my head in a bucket of water. That brings the list to 13.
Five "pieces of awareness" about food allergies:
-A recent study published in Pediatrics reported that over 30% of children with food allergies say they have been bullied about their allergies. Previous studies have also found that having a food allergy puts a child at risk for bullying.
-Kids with food allergies have some of the highest anxiety rates compared to other disorders, including diabetes.
-Adults in children's lives often model exclusion and pressure children in ways they are unaware, because they do not fully understand the severity of many food allergies. Kids learn to refuse food or bring their own, but are often treated poorly because of it. Kids are put in a very difficult social position, particularly when the sharing of food is such a part of our culture.
-Children have died in schools because administrators did not take their allergy seriously, and were not willing to have emergency medication on hand at the proper times and follow the correct protocol.
-There are many people with minimal food allergies or 'intolerances' who are not aware of best practices for food allergy management, and their casual approach to the risks involved is seen as socially acceptable for food allergy management as a whole. Folks with severe food allergies who have to follow unusual precautions are viewed as being rude or distrustful.
The last year I have struggled so much with the allergies- not just the food but the social implications for me, as a parent, and for my child. I wondered why I always experienced so much resistance. Other people just didn't seem to understand and I felt this tension in the air when I had to explain about her allergies or politely decline food. Instead of listing a bunch more facts, I thought the best way to raise 'awareness' would be to share some of my day-to-day experiences.
"Through the eyes of a Food Allergy Mom" I will call it.
Some of my day-to-day experiences:
- When I politely ask the deli lady at Kroger to clean the machine before she cuts Anna's turkey, she gets mad and is rude to me. When I ask to see the ingredients of certain meats I am treated as if I'm paranoid or lying. Sometimes workers will refuse to show me the ingredients. Several times I've been treated so poorly I had to choke back tears. Every grocery store visit I get a pit in my stomach when I head to the deli counter.
- My child breaks out in hives at a birthday party and I'm in the corner giving her Benadryl while she is itching her whole body... all from sitting in a high chair that wasn't wiped down. Yet if I were to wipe down the seat before I put her in it, it would look weird and a little rude, as if I thought they weren't clean enough. The easiest thing is to just stay home.
- When someone offers us food I have to politely decline because I don't know what's in it. Or someone wants to make dinner and asks me what Anna can and can't have. I have no way to answer them, because unless I make the food myself or take part in its preparation, I can't feed it to her. There is too much involved in avoiding 12 allergies, some of which are not even clearly labeled. Sometimes I am treated like a stick in the mud (Update: now that some of her allergies have gotten easier to identify, good friends are able to serve food that I know Anna can have!).
- I decide to be brave and take Anna to a social gathering, a cookout, something I would usually avoid. I decide to be more laid back and not hover over her. My child sees a snack cup and thinks it is hers. She pops a snack in her mouth, just as I see that it is something she is allergic to. I grab her and ram my finger into my mouth to take the food out. She starts screaming because she doesn't understand what happened. Everyone in the room looks at us, and I feel like crawling into a hole.
- Every time I drop my child off at the nursery at church I explain her allergies and her medicine, particularly because the workers are usually never the same. I always feel like the paranoid mom. In the back of my mind I am always wondering "Does this worker take this seriously? Will they really keep an eye on my child? Will something happen?"
- I find multiple foods in the grocery store that do not list all the ingredients (I'd say about 70% of packaged foods list unspecific spices on their labels). When I call the company to get more information they are usually extremely rude to me and will not give the information I request, stating "ingredient confidentiality".
- Every time we get invited to someone house or to a party, I weigh the costs and benefits of going. If I go, I have to bring separate food for Anna and possibly fight battles about why she can't have what everyone else is eating. She doesn't understand.
- We no longer accept invitations out to dinner. The last time we went, we brought food for Anna, but she ate it all within ten minutes. While they other kids were snacking on dinner rolls, Anna gets really upset because she can't have one. It was awful.
- When we go to the airport I have to pack all of her food with me, and the TSA workers demand to open it or that I leave half of it because I can't take it on the plane. Then she doesn't have anything to eat because I can't give her restaurant food.
- When the kids eat together at her 'school', Anna is put in a separate high chair. This is because all of the other kids share their food. Anna is separated from everyone. I want her to be included, but there is nothing I can do.
- When parents bring a treat to 'school', Anna can't have it. When the teachers try to be helpful and say "so-and-so's mom wants to know what Anna can have" what can I say? I can't simply tell someone I don't know how to make food my child can eat. It's more complex than they realize.
- We go to story time at the library and they have a craft afterwards. The craft almost always involves food. Every child gets to make their 'caterpillar' or whatever, and then eat it. My child cannot. I have to keep her from eating it and keep her from being a part of the social inclusion of enjoying food together. Might as well stay home.
- We found a church we like, but the nursery isn't safe for Anna. There are only a few workers for a lot of kids, and snack crumbs are spread all over the floor where the younger kids walk and crawl, and Anna puts everything in her mouth. Ben and I take turns watching her in the foyer but we can never enjoy the service together. We decide we have to find another church. Thankfully it ended up being our old church where all of our friends are, so it's all good.
- People invite us over for the weekend or to travel and go on trips. We usually decline because we would have to pack days worth of food for Anna. We're going on a trip to see my family this summer, and I am leaving Anna here. I would love to take her with us, but the logistics of providing her with safe meals will be too difficult. I hate that she has to miss out on that time.
- Most of the church events have free childcare so parents can go to meetings and participate in service projects. They usually serve pizza or something. We don't go to them, because sticking Anna in a room full of pizza and kids with pizza hands would probably result in her breaking out in hives from contact, and even if she managed to avoid that, what would she do while everyone else was eating? Might as well stay home.
- On a regular basis I feel anxious for my child's future. What will she do if she's on a sports team and everyone goes out after the game? How will she go to an overnight or a trip with a friend? Will she never go out to eat- the number one most common social activity? How will she go to summer camp? How will she eat at a dining hall in college? I feel sick just thinking about it.
I write this not to whine but to raise awareness of what it is like for moms of kids with food allergies, particularly difficult ones. If you have an encounter with a kid with food allergies, show compassion. Try not to make assumptions or judge their mom. Try not to view us as overprotective, overanxious, or distrustful. Don't get upset when schools ban certain foods- remember how easy it is to forego a few foods in your kids' lunch compared to the daily complications of kids with allergies. Try to imagine how you would feel if your child was excluded from so many social opportunities. How isolating it can be. Try to plan social events that center on activities other than food. Try to understand our plight and if you can, try to find a way to include our kids. That's what we really want more than anything.
This sounds like the story of my life im a mom with a toddler that has severe food allergies and i recently wrote a children's book about them please feel free to check it out: https://www.createspace.com/3849834
ReplyDeleteOh Lisa, I hate this (also, not sure how I managed to not notice this blog for several days...slackness.) so much. :( I can't imagine how consuming and stressful it is-- and seriously, FIVE NEW ALLERGIES!??! I mean...wow. Just...wow. Love you. Hate this. Praying for yall.
ReplyDeletethank you for your "real" list. It definitly changed the way I think of true food allergies.
ReplyDelete