When our daughter was first diagnosed with her peanut allergy, she was 10 months old. At the time, it was scary, but it also answered a lot of questions. All of a sudden, we knew why she was such a “colicky” baby, why she seemed to mysteriously be in so much in pain while she was nursing and why she got so many rashes.
She was still a babbling baby, on the verge of walking. She sat in her high chair as she made her way through the new solid foods her baby book suggested. Her life was relatively simple, and her network of caretakers was very small. When we received the results of her allergy tests, the only people outside of our family we really needed to inform of her “Anaphylaxis Action Plan” were her three daycare teachers down the street and her one occasional babysitter.
But, as Emma likes to remind us, she isn’t a baby these days: She is now a bubbly, precocious 6-year-old on the verge of entering the first grade. She ties her own shoes and wears a ponytail every day. She can spell. And her network of loving grown-up caretakers has grown enormously.
As Emma has moved from toddlerhood to childhood, she is starting to exercise greater levels of independence. This puts a new emphasis on Emma’s ability to be thoughtful and communicative about her allergy. She is that kid on Halloween who dashes to each house with the greeting, “Trick-or-Treat! I’m Emma, and I’m allergic to peanuts!” (Which is usually greeted with a smile, which melts quickly into a look of mild horror by the now-anxious neighbor.)
But the truth is, she’s just 6 years old—so, developmentally, she has one foot firmly planted in reality and one still in fantasy. She dresses up in capes, plays with dolls and occasionally asks me if she can be a mermaid when she grows up. She is not yet what you would call a trusted source of medical information.
So where does that leave us? It places new responsibility on the growing group of adults around her, including adults I don’t always know very well.
Some may assume that my first request of her classmates’ parents is to stop packing PBJs in their child’s lunch sack, but I’ve actually never asked anyone to do that. My husband and I figure that the world is not peanut-free, and we are trying to prepare Emma for the real world. (This is not global permission extended for every child with a peanut allergy, as having peanuts in a classroom could be dangerous for kids who have an airborne allergy.)
The biggest item that stands between a safe Emma and an unsafe Emma is really the honesty of these adults.
I often have to ask them to be straight with me about what they do and do not know, so I can fill in knowledge gaps before she goes in to their care. It's easy to wave it away at a busy drop off, but would you really know what anaphylaxis looks like if it starts to unfold in a child before you? Do you know how an epinephrine injection works? Do you know how to read a label to make sure a snack is safe for Emma?
If not, that's OK. But we need to talk so I can get you up to speed.
We need to go over, in detail, what to do if Emma goes in to anaphylaxis while I’m not there. We need to talk about how to administer epinephrine, when to call 911 and to have the backup dose in hand on the way to the hospital, in case the first one isn’t enough.
I’ve learned some tricks of my own when it comes to being the parent of a child with severe allergies. I need the other adult’s full attention. I do whatever I can to ensure that I don’t have these conversations with a new teacher on the first day of school, for instance, when she has 16 new children and their parents swirling around her, asking where the bathroom is.
I need to be firm, but I also need to be approachable and matter-of-fact.
If I’m that anxious mom who intimidates her child’s new caregiver with hysterics or anxiety, they may not be open with me about what they don’t know. When an adult tells me that they don’t fully understand what anaphylaxis is or how the syringe works, I’m grateful. Then I can help show them what to look for and what to do. At the end of the day, the directions are actually pretty simple.
I’m like any other parent: I want my child to learn new things, make new friends, eat new foods and dream of being a mermaid, if she wants to. I just know I have a special compact with the adults around me, so my kid can do those things safely when she’s in their care.
As they say, it takes a village, and this village knows a thing or two how to administer epinephrine.