Wednesday, May 20, 2015

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.


Moe and Ren

Friday, May 15, 2015

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.

Sunday, May 3, 2015

The Great Jacket Dilemma (Choose Your Own Adventure)

Thursday night was Pink P's spring concert. Originally, I planned to write a follow-up piece to the one I wrote after her concert last year (link). My biggest challenge this go around was figuring out how to appropriately praise each kid when one (Pink) was clearly into it and the other (Sky) clearly wasn't. While hundreds of kids sang smiling around him, energetically engaged in the various hand motions, Sky stood stock still with his arms wrapped tightly across his chest and a grimace spread across his face. It was as if the whole thing was just too embarrassing to even bear. To his credit, he did seem to be singing, but it was hard to tell because his jaw was so tightly clenched. I mean, he did great. But, we still clearly have work to do on helping him see the value in feigning to care about things he doesn't like.

Pink did awesome as usual. She was a little nervous at first and looked like she was on the verge of tears when she couldn't locate us in the crowd. But, otherwise, she was totally indistinguishable from her peers. Her ability to blend in so effortlessly still amazes me. We often leave Sky's concerts in a somewhat stunned silence, and it takes a bit for the nervous tension to dissipate. That never happens with Pink, and the difference between the two leads to a somewhat uneven post-show reaction from us. I'm working on figuring out the right amount of enthusiasm and praise. We're proud of both kids, of course, and honestly, it has nothing to do with their ability to stand in front of hundreds of parents in a crowded gym and repeat songs they've spent months learning.

The real story of Pink's concert was The Great Jacket Dilemma.

Two songs into Pink's school program, Stow announced he needed to go potty. Of course he did. You know, since we were at the top of the bleachers in a packed gym, and since I knew Pink would panic if I suddenly disappeared from the crowd. So, I did what any other mom in the same situation would do, I told him he was just imagining it. To be on the safe side, though, I kept checking with him and reminding him that he really didn't need to go potty. For awhile, it looked like my strategy might work. But with just two songs left in the program (it was a looong program, you guys), Stow decided that he couldn't wait another second. Realizing my gamble wasn't going to pay off, we left Ren** and Sky in the stands and wove our way through the crowd of people and across the gym to the restroom. 

To his credit, Stow moved quickly and took care of his business without incident. But, then, tragedy struck. In an epic parenting move heretofore unparalleled (and probably never to be duplicated), I dropped Stow's jacket into the toilet when I went to help him pull up his pants.

Quite unexpectedly, I found myself in the middle of a Choose Your Own Adventure:

A) Leave the jacket in the toilet and run.
B) Take the jacket out of the toilet and deposit it directly into the trash can.
C) Take the jacket out of the toilet and pretend nothing had happened.

Digression: After we got home from Pink's concert, I asked you, my readers, what you would do in the same situation. Interestingly, responses were fairly even. Until, that is, I introduced the possibility that the toilet had not been flushed. Then everyone changed his/her answer to B. Thanks guys. Really. Sheesh

 To tell you the truth, I tried a bit of all three of these with varying degrees of success.

For a few nanoseconds after the jacket hit the water, I considered leaving it there. But, then I imagined the janitor keeling over with a heart attack upon finding an extremely water-logged, poop-brown jacket in the toilet the next morning. I couldn't live with myself if I inadvertently killed an imaginary janitor.

So, I grabbed the jacket out of the toilet and dropped it into the nearest sink. As luck would have it, the paper towel dispensers were all jammed. Had the jacket hit the water after we'd flushed, I would have just wrung it out into the sink. But, flush status was negative, so I needed to figure out how to reduce the amount of water in the jacket without completely fouling myself. (I suppose you'll want to know that it was #1 and NOT #2). I tried squeezing out the water by stepping on it, but I only succeeded in grossing myself out even more. Stow suggested using toilet paper, but that's his solution to everything, and believe me, it's not a solution.

The jacket's old. We bought it for Sky seven years ago when we lived in Tokyo. It's faded and the seams are worn. Multiple washings have left it slightly misshapen. Sure, I like the fact it's reversible and that it's thicker than our other spring jackets. But, I could live without it. And, as I stood there, urine-soaked jacket dripping gently on the floor, I could hear laughing and clapping coming from the gymnasium. Time was running out. I decided to cut my losses and turned toward the large trash can.

"Nooooo!!!!!" Stow cried. "Don't throw away my jaaaaackeeet! I wuv my jacket!"

There was a round of applause in the gym. One song left. We needed to get back in there before it was too late. Remembering all of the hundreds of times I'd been fouled by vomit, feces, and urine, I decided to just suck it up.

Bending over, I rolled up the jacket with the wettest parts inside, washed my free hand and led Stow back into the gymnasium. Holding the wet jacket down to my side like a fashionable clutch, I walked Stow back to our seats (passing hundreds of people in the process). We sat in a couple of empty seats toward the front of the crowd and waited for the final song to end. I tried to focus on the concert, but my brain was working overtime to avoid thinking about the jacket at my feet. When the song ended, Stow and I wove our way through the crowd to go retrieve Pink. Since it was a mass of humanity, my purse/potty jacket may have rubbed against a few people along the way. I'm pretty sure I managed to avoid hitting any small children in the face with it, but I can't be positive.

When we got to the car, I put the jacket in a plastic bag and washed my hands with an antibacterial wipe, and when we got home, I threw the jacket into the wash. 

In the end, everything was fine. But, the irony of this experience wasn't lost on me. For our family, concerts in gymnasiums full of people are anxiety-provoking affairs. All sorts of unfortunate things have been known to happen--from Ren not being able to walk after sitting on hard wood for too long to Sky making loud noises and inappropriate sounds effects or otherwise drawing attention to himself with truly bizarre behavior. Or, from Pink complaining loudly about the quality of the music to Stow hitting his siblings, wetting his pants, or falling up or down the steps. Even when nothing major goes wrong, there are usually enough troubles to stress me out. This time, though, everything went perfectly.

That is, until I dropped the jacket into the toilet. It turns out that sometimes the source of adventure is all me.

** Man with cane + preschooler + top row of bleachers  = insanely high risk