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Food Allergies, Entitlement, and Not Being in a Bubble

Facebook comments from a recent article in which a mom defended the idea of keeping a classroom or school nut-free to protect kids with allergies:

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When thinking about the push back allergy parents get from other parents, it often comes down to three things:

(1) Don’t let your kid feel like they’re entitled to tell everyone else what to do.

(2) Don’t tell me to put your kid before my kid.

(3) Your kid needs to learn to survive in the real world, so don’t put them in a bubble.

As an allergy mom, I have a knee jerk reaction to all three, but I’m learning to take a deep breath and remind myself that these statements aren’t coming from a place of aggression toward my kid. It feels like that’s what it is, but what this really is is a defense mechanism. By default, allergy parenting involves a lot of us telling other people that they have to make Eva important…and not in the “all kids are important” kind of way, but in a “you need to do this our way or this won’t work” kind of way. That’s a tall order when we’re all preprogrammed to be the person who puts our own kid at the top of the list.

What if it was political? Or religious? Or a parenting philosophy? What if I had strong feelings about cartoon characters and keeping my kid away from all media influences? I could come to school knowing in my soul that the sight of a cartoon character will damage my kid, but the minute I hand out the letter asking the other parents to please save the cartoon-laden t-shirts and backpacks and sneakers for non-school hours to protect my kid’s subconscious from the influence…well, the pitchforks would come out and there would be a lot of “your kid is not entitled” and “don’t tell me how to parent my kid” and “you can’t keep your kid in a bubble.”

And, frankly, they’d be right. Because that would be crazypants.

Except it’s not cartoons. It’s this medical thing that we didn’t want but we got stuck with it and if I want her to go to school and I don’t want her to die, I have to be the crazypants that makes you shake your head at my entitlement and feel bad for my kid in her bubble.

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It’s been a rough few weeks.

We tried to send Eva to school.

Yes, I said that we were doing the homeschooling and, in fact, we’re also doing homeschool and lessons and weekly themes and all of that. The original plan was that we would do homeschool exclusively for this last year before Kindergarten and we would do it to get a sense of how life would be if school just isn’t an option. But a program opened up in a larger school that had great reviews and Eva’s best friend was attending and Eva hasn’t been hospitalized in about a year now and she so very much wanted to go back to classmates and playgrounds and something new. Plus, this is a kid experience. I do not want to be in the business of telling my kid she can’t be a kid because medically she’s bad at kid life.

So we said yes. And then I said no, no no no, and Kyle said OK, no, and then I thought about that bubble and said yes again. Yes, no, yes yes, no. For the record, if people think allergy parents make these decisions lightly, it’s just not possible. There were a lot of nights without sleep. A lot of phone calls and Internet articles and buying extra medicine. Embarrassingly, during this past month, a lot of my hair fell out. Like…a lot. Like, I need to style my hair a certain way now. I don’t know if it will grow back. It abandoned ship. Couldn’t take it.

Fact: when your hair abandons you, you’re either losing your mind or you’re taking an unnecessary risk. Or both. Probably both.

School for Eva is so risky, my freaking hair fell out. So I should keep her home. But the bubble…she shouldn’t be in the bubble…

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For the first two weeks of our school experience, Eva couldn’t be there by herself. I had called and talked to absolutely everyone I was able to get contact information for, but there was a last minute shuffle and Eva ended up in a program with two teachers who had never actually taught their own classes before, let alone had experience with an allergy kid. We had to wait for legal papers to be signed and medical trainings to happen (Eva comes with a lot of liability) so I pulled strings and relied on kind friends to watch Calvin and I sat on a tiny metal chair in the corner of the preschool room while Eva colored and made new friends and did her thing.

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It was bumpy, since we had a few miscommunications about how often Eva needs to wash her hands (all the time), whether she’s allowed to eat anything that isn’t from home (no, not even treats), and how much of a problem it is if the other kids don’t feel like washing hands when they get to school (a big problem if they ate peanut butter). Still, I managed and took deep breaths and gave her space unless she needed medicine and drove her home early when her hands cracked open and bled spontaneously from the unfamiliar soap. Because this is what it is to be Eva.

Finally, with all the papers signed, all the extra medications stocked, her new epinephrine emergency belt under her shirt, and her shiny new medic alert bracelet strapped to her wrist, I dropped her off and left. Eva in the real world. Eva, protected by forms and backup epinephrine and my pushy entitlement telling the other parents what not to feed their kids.

She lasted an hour.

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I just happened to be in the bathroom the first time the teacher called, so by the time I heard my phone ring there were already three missed calls from the school. Nothing, nothing is more terrifying as an allergy parent than seeing the caretakers number pop up on your phone after you’ve left your child somewhere.

The teacher, a little panicky but doing OK under the circumstances, told me that Eva said she was having a hard time breathing. I told her to give her the emergency inhaler and that I would be there in three minutes. Made it in two.

Eva was sitting on her teacher’s lap on a bench, watching the other kids play on the playground. She seemed fine to me and smiled, switching to my lap happily. I asked how her breathing was and even though I could tell that she was straining just a bit, she obviously wasn’t in distress anymore. So what was going on?

Turns out, Eva had a panic attack that turned into an asthma attack. I figured this out because (A) her teacher told me she seemed better as soon as she got her inhaler and was told I was on my way and (B) as soon as I told her I couldn’t stay with the class she got upset again.

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Eva is old enough now to understand her allergies. She remembers her last three hospital visits vividly. She gets what’s happening when her airway starts to close and her skin lights up in that horrible red rash and everything starts to swell. And, for better or worse, Eva understands that exposure could make her so sick it would end her life. That may seem shocking since she’s only four years old, but you can’t explain life-threatening allergies without defining “life-threatening”. I really wish that we hadn’t needed to sit her down and explain that to her. I’m not thrilled that my preschooler understands her mortality, but that’s my job. It’s part of the package. It’s part of that bubble.

Because of all of this, Eva understood that her level of danger went up when I left the classroom. She understood that she didn’t know what her friends had eaten for breakfast or what might be on all of the unfamiliar toys. Eva knows how to recognize the things that she can’t eat and to not put strange food into her mouth, but she also knows that her exposure often comes from the invisible proteins left behind by someone else.

Imagine that. Imagine being old enough to know that there might be invisible common things all around that won’t hurt anyone else but which might hurt you so badly that you’d have to get a shot. That you’d have to spend the night at the hospital hooked to machines to help you breathe. That you might die. And imagine that you are old enough to know all of that but you’re still too young to give yourself your medicine, to retrieve your inhaler from the safety cupboard, or to use a phone to dial help if you need it.

Eva panicked because she was at school. It’s very likely that this is my fault. It means I’m simultaneously doing a very good job (hey, she understands the risk so she doesn’t have to rely on me telling her classmates what to do) and a very bad job (hey, I put so much fear in her that leaving the bubble induced a medical problem).

I wanted her to try again at least one more time to prove to her little psyche that she could enjoy a day at school without me and stay safe by taking care of herself with her personalized snack and her hand washing and her medical emergency kit. I won’t go into details, but she had so much stress the night before the proposed Operation Solo at School: Day 2 that I thought we were going to actually have to take her in to the hospital. So I said she didn’t have to go. And she got better.

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It wasn’t the parents or the teachers or an angry mob that did us in this year. Eva, for so many reasons, isn’t ready to be outside of her bubble. Our kid is friendly, funny, dramatic, curious, creative, loving, relaxed, happy, and responsible about her allergies. But she’s scared and it isn’t because she’s not in touch with the real world. She totally gets it. That’s the problem.

I worry about cultivating the fear. I worry that my own fear is contagious. I worry that we’ll put off leaving the bubble for so long and she’ll carry that fear forever. We’re trying, though. We’re working on figuring this out so she can be strong and happy and healthy and all the other things we all want our kids to be.

What I don’t worry about is Eva feeling entitled. She’s not entitled. I wish she was entitled. I wish she felt like she could confidently go into a room and tell someone that they needed to keep her safe and believe 100% that they were going to do just that. I feel like she deserves to have that at four years old, but it isn’t something we’ve cultivated because it just isn’t true and she needs to know that.

I, also, am not entitled. I wish I was confident enough to feel like I was entitled to send my kid to any school safely and the world would bend for us. I wish I was entitled to ban edible birthday treats from classrooms. I really wish I could drop her off at the curb, give sneering parents the middle finger, and drive away. It’s just…not reality. I’m not entitled to any of that. If I was, there would be less begging and meetings and research and I would have more of my hair.

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Anyway, we pulled her from the program after her one hour of unsupervised school. We bolted. We tucked tail. We ran for the hills. I am Jack’s acute stress response.

The compromise was a different arrangement that was always a fall back. It’s not a full school program and it’s not as many hours, but it will give her some time in a different environment that she already knows and is comfortable with so she’ll get a break from mom homeschool and I’ll get another year of figuring out what we’re going to do.

It’s funny, though, to now read the things people say about food allergy parents after what we’ve just gone through. I, for one, am the first to agree that having food allergies in the mix is a pain because of the complications (welcome to our life) but I wanted to throw this story out there to dim some of that perception that the food allergy parents are smugly prancing out of the elementary school on a power trip because they got to Queen Bee everyone else.

I wish. I seriously wish.

UPDATE: Thank you to everyone who has read/shared this post! I really appreciate it and even though not everyone agrees with me I’m happy that conversations are going on so we can trade perspectives.

If you’re wondering about Eva’s perspective, I wanted to share this short video we made a few months ago. She talks about allergies and asthma in her own words:

Eva did a vlog about living with allergies and asthma today. I wasn’t sure that she’d have that much to say, but she surprised me as always! Love my allergy kid…

Posted by Ever Clever Mom on Monday, June 1, 2015

 

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14 Comments

  • Reply Christy

    For everyone’s sake, I wish this was an easier experience. Eva should be able to have her bubble around her and still experience the kid things, like school.

    I wonder – can you start working on where she will go to Kindergarten now? Maybe if you can start talking to the administration and teaching teams before the OHMYGOSHTHISKIDISHEREANDWECOULDLKILLHER fear strikes, it won’t be as hard. We had a kiddo with a wheat allergy – anaphylactic reactions from flour touching his skin. His mom contacted us early, and we were able to modify some of our existing allergy policies to keep his bubble intact. I wish other parents got it. As a teacher, my biggest fear was letting this kid down. He was only at our school for a year before they moved, but he did what they said couldn’t happen – he made it the whole school year without a reaction. Our kids knew, and handwashing became a part of everyone’s routine multiple times a day, K-8. it IS possible. I hope these other parents never have to deal with your fear. But I wish they understood it a little bit better.

    September 17, 2015 at 9:32 am
    • Reply Carly Morgan

      Hooray for a year without a reaction! And honestly, hooray for handwashing multiple times a day. That is not a bad habit for anyone to get into. Thanks for your support, friend!

      September 17, 2015 at 11:17 pm
  • Reply Gaylin

    As an adult with severe allergies (all grains, including rice), I now carry safe food with me everywhere. Going to a potluck, bring my own food + food to share. Going out for dinner, research restaurant carefully, make sure I have my drugs with me. Going on vacation – well I only go to WDW since they will take care of me.

    Do I feel entitled, not in the least. Beleaguered mostly. I have a hermit lifestyle, why? Allergies. I can be around baked goods with grains in them no problem, can’t be around grain flours or their dust at all.

    I realize this is a pain for other people and I sure wish other parents could take a moment and think about ‘what if this was a threat to my child?’. I think they would take away the thoughts of Eva being entitled if they were to put the idea of allergies onto their own child’s life.

    September 17, 2015 at 11:07 am
    • Reply Carly Morgan

      It’s the truth – it’s hard to really understand unless you’re living it. I’m so sorry you have these challenges but I’m glad that people are getting better about understanding. And of course I’m glad we have WDW!

      September 17, 2015 at 11:16 pm
  • Reply Arika

    I have so much empathy for you as we have many allergies in our family, some the serious kind, like your child’s. I don’t know you or know where you live, but because we also have a child with autism, he has an IEP (individual education program) which requires an aide with him at all times in the classroom for his own safety. I am wondering if you can demand an IEP for your child as her severe allergies constitute special needs. Wouldn’t you, and she, feel better, if there was an aide in the classroom with her watching her at all times? I’d recommend getting a lawyer into the picture for it so you can ensure some control over where the aide comes from and what training they might have (a nurse?) Every child is entitled to an education, at school, and every child is entitled to have her individual medical needs addressed by the school district. Good luck.

    September 17, 2015 at 11:26 am
    • Reply Carly Morgan

      I haven’t actually looked into a formal IEP but I definitely will as we get closer to Kindergarten. It’s so good that you’re able to have an aide there for your son! I can’t imagine what people did 50 years ago when schools weren’t providing any assistance.

      September 17, 2015 at 11:15 pm
  • Reply Christina

    This was heartbreaking to read, even more so to know that this isn’t a once in a while experience but the true reality for you and Eva. I’m so sorry that things happened that way. Its very scary to think of.

    Growing up, my sisters and I were all homeschooled. In our homeschool group of about 25 families there was one child who had severe peanut allergies. His parents requested that any time we got together for a field trip or anything that we only bring allergy safe foods. Everyone was more than happy to comply. There are people out there who will gladly want to keep your daughter safe. I only hope that you can find them.

    September 17, 2015 at 3:07 pm
    • Reply Christina

      Sorry, my voice texting thought I was done and posted my comment for me 😛

      I think you come across as a very considerate parent who just wants to keep her child safe. It’s truly unfortunate that you have to go though so much in order to achieve that. I hope that our society will become more emphatic and do everything we can to keep children safe in the classroom and elsewhere.

      September 17, 2015 at 3:19 pm
      • Reply Carly Morgan

        Thank you for sharing your story about the homeschooling family you knew! I like to store up those positive homeschool stories to keep in my pocket since it’s still looking pretty likely that we’ll end up going that route. And thank you for reading!

        September 17, 2015 at 11:14 pm
  • Reply lj

    wow. thank you. I can’t imagine how tough this is for you .
    my kids r super sensitive to the situation of food allergies (not bc they have them )bc we have talked about it as a family and they know it’s serious stuff ..they r always very kind. ..again powerful story

    September 17, 2015 at 8:04 pm
    • Reply Carly Morgan

      Thank you for reading!

      September 17, 2015 at 11:13 pm
  • Reply Carri P

    It’s crazy how much allergy parents can understand one another. Thank you for a glimpse into your little one’s life. My 7 year old has a life threatening peanut allergy and moderate tree nut. We home schooled for K because I could not get to point that I felt safe with our public school choice. We then found a wonderful small private school that was peanut free to an extent and had wonderfully understanding parents and staff. My daughter was happy and thriving. Then we found out the school was closing at the end of the year due to lack of enrollment. We were crushed (and still are). We are homeschooling again and it’s so much harder now that she has been in a small classroom environment with friends. My heart breaks for her everyday…you were so brave to send Eva and so dedicated to sit with her. These are tough decisions and I think you guys did a great job. I look forward to reading your blog regularly!

    September 18, 2015 at 3:35 pm
  • Reply Kathi

    It’s just not understandable for me how parents (and I’m not one) can risk a child’s life with things that aren’t really important (I believe one can live without all this dangerous things). I’m allergic myself and it started when I was just a few months old – fortunately my allergies aren’t nearly as bad as Eva’s, but I remember to this day how my grandparents wouldn’t believe my mom and gave me things I shouldn’t have eaten. They almost never saw my reaction, but my mom was the one who had to comfort me when my skin was covered with red spots and I had to try hard not to scratch my face all the time.
    I have the highest respects for you and Eva and I really think you handle the situation the best way possible – just imagine how big her fear would be when she lies in the hospital unable to breath and everyone around her would lie to her that she has nothing to be afraid of and that everything is perfectly normal. In my opinion we underestimate children a lot in the case of how much they are aware of!
    All the best for you!

    September 23, 2015 at 9:52 am
  • Reply M

    I have been a teacher at a private preschool for the last 5 years. In that time, we’ve only had one kid with a serious peanut allergy…at 3 years old he had already had several severe reactions and hospital visits. The parents were understandably nervous to enroll him at our school…we didn’t have special allergy training other than a short demonstrato on how to use an epipen and he had already had some problems at a previous school. But we did take his allergy very seriously and were all very vigilant about the hand washing and keeping the room peanut free. Notes were sent home at open house before school began asking parents to keep lunches peanut free and one day when someone still sent a PBJ sandwich, as soon as the teachers realized it, one of them grabbed it and ran out of the room! 🙂 I felt like we accomplished something major because the boy made it through the whole school year without any allergic reactions on our watch. But our school is small and I think that helps us be more of a family looking out for each other. I hope you can find a good solution for your family. I was homeschooled and so were all of my siblings so I think it’s a great way of getting an education but we also participated in several homeschool groups for the chance to be with other kids. Maybe you can find a good group of homeschool families to spend time with too if that ends up being your solution to protecting your daughter. Most homeschool families are pretty understanding and respectful of each other and from my family’s experience, I think you’d be able to find some people who would care about your daughter as if she were one if their own children. I’m so sorry that you’re going through all of this but I hope that there will be a happy resolution to it e ith whatever school choices you make. Eva seems so smart about her allergies! You’re doing a great job teaching her to help protect herself. She also seems very kind and you’ve taught her that too. Thank you for an informative article that provided a better understanding of what allergy families are going through. I hope it will help many people be a little more compassionate and helpful to those who are going through this struggle.

    May 13, 2016 at 10:14 am
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