Peanut-free or Not Peanut-free

Well, it's been awhile since I posted a letter, but here's one I wrote to Pink's principal this morning. Interesting timing especially given my last post about food allergies (link). Also, apparently May is National Asthma and Allergy Awareness Month (so now you know!). I think this e-mail letter speaks for itself, but what do you think?

Dear Principal Edwards,

We write to let you know about a frightening incident that occurred on the bus on the way home yesterday. Pink tells us that the girl sitting in front of her was eating a peanut butter sandwich on the bus and when Pink informed the girl of her peanut allergy, the girl shoved her sandwich in Pink's face. Luckily, the peanut butter did not touch Pink, but since smelling it, she has had a tight chest and asthma-like symptoms. Only this morning did Pink think to tell us about this as she was preparing to ride the bus and reminded of what happened.

Recent allergy testing has re-confirmed for us that Pink's peanut allergy is at the severest level, and exposure to peanuts in any form constitutes a high risk. Given the severity of Pink's peanut allergy, this behavior by the other little girl on the bus is similar to a life-threatening assault. It is particularly concerning since Pink does not have an epi-pen with her on the bus ride due to the fact that the bus has been assumed to be an allergen-free space.

We'd like to request several things happen as a result of this incident. First, we'd like to ask that the child who did this to Pink is educated so she fully grasps the implications and potential outcomes of her behavior. We'd like to be sure that the child understands she shouldn’t do something like that again.

Second, we'd like broader education for students regarding severe food allergies. We are sure that no parent would like their child to be the cause of another child's serious illness or death and believe it's important to educate children about these risks and to promote better awareness.

Third, we'd like to ask that the district re-examine its policies regarding peanut/nut allergies. While we understand that there are many different kinds of food allergies (indeed, Pink has many other food allergies herself), peanuts are a special issue because they are more easily spread (from oil left on children's hands and through dust particles) than eggs, soy, or shellfish, particularly in the school environment. While it's not the most common allergy, it’s potentially very deadly with a very small amount of the allergen. 

While Pink's teacher is aware of these risks and we have epi-pens available at school, we remain unconvinced that Pink is safe in her current environment, particularly in light of yesterday's events. Pink's teacher has been very good about maintaining a peanut-free classroom. We are less sure that Pink is safe in the cafeteria or on the playground or in the hallways or on the bus. A severe peanut allergy like Pink has is classified as a disability and therefore is subject to FAPE. We would like to explore ways to ensure that Pink is safe and healthy at school and that she is not unfairly limited by her allergy. We understand this request is coming near the end of the school year, but we think it's important to address this issue for her future placements particularly in light of the district-wide policies regarding life-threatening food allergies.

Sincerely,

Moe and Ren

The Face of Severe Allergies

See this face? This is the face of a little girl who just learned she can't eat tofu anymore.

I don't normally post pictures of the kids on my blog, but this is important. This is what life with severe food allergies looks like. Not all the time, but enough of the time. A lot of people only think about food allergies and sensitivities from the perspective of convenience. It's a hassle to accommodate someone who can't eat what everyone else does. I get it.

But, learning you can't eat entire groups of food because of allergies you didn't ask for and you don't want? That's hard for anyone, but especially for a seven year-old. I know not being able to eat tofu doesn't seem like such a big deal. How many first graders care all that much about tofu anyway? With gluten, dairy, and peanut allergies, though, Pink has given up so much already. Allergies have taught her first-hand about the unfairness of life and about being different and wishing you weren't. Though she couldn't articulate it, her tears were her way of grieving losses she can't quite wrap her head around.

At the allergist on this day, she heard first that she would never outgrow her dog and cat allergies, and worse, that she was at high risk of becoming allergic to other animals as well (which explains the repeated swollen eyes when she rides horses). When the doctor suggested she avoid all furry animals, she whimpered a bit (but managed not to cry). Then he told her no more eggs or shrimp. She's never liked shrimp and maintains a diplomatic neutrality about eggs. But, soy? Tofu, edamame, and natto are three of her favorite foods. When the doctor got to soy, the cumulative losses were too much to bear. How do you help a kid make sense of these injustices when all she should be worrying about is playing with her friends, reading chapter books, and hanging with her brothers? Food allergies stink because they make it hard for a kid just to be a kid.

I could post pictures of some of the other faces of Pink's allergies (but, I won't because Pink asked me not to). Pictures of her lips swollen to three times their normal size after she touched them with peanut butter when she was two. Or, of a little girl celebrating her first birthday with raw red patches on her cheeks where the eczema (from what turned out to be a severe milk allergy) was so bad it bled. Or, of her eyes swollen shut because she touched a dog and I didn't have Benadryl on hand. (Did you know the whites of your eyes can swell? They can. I have a picture of that, too.) Or, of Pink with a nebulizer mask strapped to her face, as we sit in the ER, hoping this fourth dose of albuterol will bring the asthma under control and keep her from being admitted so she doesn't have to miss the birthday party she's been looking forward to for weeks. These are the faces of our severe allergies.

When I posted this teary-eyed picture of Pink on Facebook, friends, some of whom I haven't seen in years, responded with recipe suggestions and offers to send things that would make life a little bit easier for us. The next day, one of Pink's classmates even brought her a box of allergen-free snacks so she wouldn't feel so sad. Life with severe allergies can feel alienating and lonely, so these kindnesses were like a thousand tiny acts of grace.

As severe food allergy awareness week draws to a close, I want to thank all of the folks we know who offered their support. But, I also want to say thanks to all of you who see the kid who can’t eat what everyone else is eating and work to make him feel included, too. I want to thank all of you who choose not to send your kid to school with peanut butter and jelly sandwiches even though it's her favorite food. With severe allergies, it takes a village to keep our kids safe. Thanks to all of you who see yourselves as part of the village.