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:
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.
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…
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.
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.
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.
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.
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.
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
Pin this post for later: