Anxiety, Food Allergy Management, School & Food Allergies

To Those Lucky and Empathy-Lacking Moms*

To Those Lucky and Empathy-Lacking Moms*

Conflicting ideasLately, there seems to be a lot of venom out there on the interwebs between the food-allergy moms and the food-allergy-free moms. This is par for the course, with uproar on both sides ebbing and flowing, usually flowing when an article or blog post is written about how childhoods are ruined when food is banned from birthday celebrations at school. In general, I try to steer clear of these wars debates for two main reasons. One, I feel like my family has a fairly good grip on both our food allergy management plan and our emotional state related to the kids’ allergies so there’s no reason for me to get inflamed about something that doesn’t directly affect us. And, two, I loathe reading insensitive comments from trolls who suggest things like, because my kids have life-threatening food allergies, their genes should just be allowed to be extinguished. You know, Darwinism in action. For the most part, moms (and, less often, dads) who write these unsupportive articles with regard to how their child’s life is being unnecessarily inconvenienced – or ruined – by another child’s food allergies are not bad people. They most likely are merely lucky enough to have a neurotypical and healthy child and are suffering from their own disability: a diminished capacity for understanding and empathy**. You see, your inability to empathize with my child’s life-threatening medical condition means that you’re teaching your child how to be rude and uncompassionate and a bully. And moreover, stop crying that your kid can’t feed cake to every other kid at school…since when is school your kid’s birthday party venue? And stop whining that, if you are given permission for the school to host your child’s birthday party, that you have to make a little extra effort to ensure all his birthday party guests – who have no choice but to be there – can participate in the event, which, you’re arguing, consists solely of scarfing cake. Teach him how to be a good host and accommodate his guests, not only so they’ll have a good time at his party, but also so it’s not interrupted by EMS taking a party goer out on a gurney while receiving multiple injections of epinephrine – or how about just so nobody dies at his party? Am I saying that my food-allergic child is more important or precious than your child? Of course not. But it seems to me that you’re saying your child’s cake is more important and precious than my child’s life. That’s not only rude, it’s psychotic. Given how prolific obesity and diabetes are, why are you even debating the merits of sending in sugar-laden treats for not only your child, but everyone else’s too? Save the birthday cake for the after-dinner celebration at your own home. Oh, you’re celebrating at home with another cake? Hmm, is it any wonder that nearly 18% of kids are obese? If you can’t think of a different way to celebrate another trip around the sun other than eating a piece of cake, here are some ideas:

  • Give a dollar store trinket to each kid because we all know kids like those junky gifts even more than they like junky cake (pencils, erasers, stickers, pinball, paddle board, stuffed animals, bouncy balls, tattoos, bubbles, books, crafts, action figures).
  • Come into his classroom and do a craft with the students – tell the teacher that it’ll be less mess than cake and won’t really take any more time.
  • Negotiate a 15-minute longer recess and have the class sing happy birthday on the playground. This one is my favorite and probably the most appreciated by the kids and the teacher. The teacher should totally be on board since the kids will be occupied for an extra 15 minutes on the playground versus spending five minutes stuffing their faces with cake and then an hour bouncing off the walls from the sugar rush. Plus, she won’t have to clean up junky cake crumbs from her classroom.
  • For younger kids, read a book to the class and then donate the book to the classroom.
  • More ideas

*Wow, this post took a complete 180 from where I intended it to go. I was initially going to tell the food allergy moms to calm it down a bit. The article yesterday kept making disclaimers that life-threatening food allergies were game changers and didn’t apply. I initially didn’t have a problem with the author’s perspective. We keep shelf-stable treats in my kids’ classrooms for birthday celebrations, which are just about weekly. It works for us. But as I wrote out my thoughts here, I decided that it really is silly for someone to argue so vehemently for celebrating birthdays with food at school when there are so many more important reasons to celebrate without. **Instead of focusing on the inconvenience you feel for this one moment in time, picture instead what it’s like to live in the shoes of the mom of a child with life-threatening food allergies every single day. Below are some of the things you’d have to deal with (and to be honest, this barely scratches the surface). And by the way, I offer this information to provide perspective, not to receive pity.

  • Every time your child eats anything, you wonder whether this will be the time that you have to inject him, as he screams, with epinephrine, ride to the ER in an ambulance, and pray to a god you may not even believe in that he will be OK.
  • You know that the above is a possibility because when your child had that first reaction, you were dumbfounded by how quickly his lips and tongue swelled up, his eyes became red, and his skin looked blotchy. Then you watched him become lethargic and vomit, while he broke out in hives all over his body. At the ER, he just looked stunned, prone on the enormous hospital bed, you holding his chubby little hand as he wore an oxygen mask and a nurse took his blood pressure.
  • Going out to eat is such a production and so risky that you usually just don’t do it. Grabbing a quick dinner from the grocery store is never quick. All the nicely prepared foods in those long display cases are off limits since they’re made in a kitchen that uses your child’s allergens, as is the salad bar and hot food bar. So you’ll need to prepare dinner, just like every other meal. Shopping for ingredients that come in a package is time consuming since each label has to be read every time you buy it. But don’t worry, you’ll get used to making all of your meals from scratch.
  • When the school’s number comes up on your cell phone’s caller ID, especially around lunch time, your heart skips a beat as you snatch up the phone while praying again to that god you may not believe in that it’s not the nurse saying she thinks your child may be having an allergic reaction.
  • You can’t help but read the articles about the kids who died from a food allergy when they come up on your Facebook newsfeed, and you cry not only for the family who lost their child, but also because the possibility is real that one day an article like that might be written about your child.
  • A weekend spent with the grandparents feels like it requires more planning than the free time with your husband is worth. You pack all your child’s food for the weekend and present your food allergy reminder course to your in-laws before they leave with epinephrine auto-injectors in hand.
  • Play dates and sleep overs are always at your house. Sending your child to a friend’s house, unless he shares your child’s allergies (and none of them do), is too risky.
  • Even though you live in a safe neighborhood, your child can’t roam and explore like you did as a kid because you never know when a severe reaction may occur. He has to always be close to an adult who knows how to use the epinephrine auto-injector and can call 911 (and that person is almost always you).
  • Going to another child’s birthday party sometimes requires more planning on your part than on the birthday child mom’s part. You need to find out whether your child’s allergen will be served, and if it is, you have to decide whether your child can even go. If he has bad reactions just by being around his allergen, you’ll flat out decline and then have to explain to your crying child why it’s too risky to attend. Your child can never eat the cake, so you spend the morning baking his own safe treat before each party. No biggie, your child is used to this and so are you. You get to the party and all the other parents wave good-bye and go have 90 minutes to themselves. But you have to stay: you can’t burden the birthday child’s parents with a crash course on recognizing an allergic reaction and EpiPen training. After “Happy Birthday” is sung and the mad dash to cut and serve the cake begins, your child looks at you expectantly and you nod, dodging around the other kids and the adults who are frantically slicing cake and flinging icing and crumbs like confetti as you try to procure a crumb-free plate, napkin, and fork so that at least your kid’s dinnerware will match the other kids’. Then you carefully place his treat down in front of him and answer his friends’ questions about why he gets something different. Upon returning home, you have him wash his hands well and change his clothes so that he doesn’t get itchy, red eyes within the hour, which is what used to happen before you learned this post-party trick.
  • And given all of the above, you have to deal with people who still honestly think that food allergies aren’t real or who think that if your child eats just a little bit of his allergen he’ll be fine. Because, you know, it’s food and food is innocuous. OK, maybe he’ll get a few hives, but you’re really blowing this whole death thing out of proportion.

23 Comments

      1. sally

        I really could not have said it better. Funny thing though I posted it on my wall and I got NOTHIN! One person liked and shared it. Nobody else even commented on it, however, I like and applaud and share every other piece of @##*@? they put out there because I want them to know that I care and that I pay attention. Very disappointed in “my people”

        Reply
        1. Yeah, I probably need to write a Cliff’s Notes version with a catchier title so people outside of the food allergy world will actually read it. How about, “Yes, my kid *is* more precious than your kid’s crappy cupcake”? I bet the one person who read and shared it was a FA mom. Oh, well. Maybe they are reading it and just can’t find a good argument – because there isn’t one. Nobody died from NOT eating cake.

          Reply
  1. KH

    I just had this same discussion with regards to Valentines being sent in. My daughter’s teacher suggested to the parents because of life threatening allergies in our classroom to provide trinkets instead of edible treats…out of 23 parents only 8 listened. My daughter during her departure from school started to blow on a whistle that one of the 8 parents supplied but was also mixed in with the other edible items that were sent in…she went into full anaphylaxis. A week later is still on an inhaler and antibiotics to get the inflammation and swelling down in her lungs that this reaction caused. She is still wheezing so bad that she has been unable to go to school since. I’m so sick of stupid parents…sick!!

    Reply
    1. Oh, no! I’m glad she’s on the mend. I really hope the school followed up with a letter to parents explaining what happened, not as an “I told you so” but so they can better understand WHY we ask for what we do. We’re not trying to be difficult or limit someone’s freedoms. Most times our requests are necessary to prevent reactions and keep our kids safe. Best wishes to your daughter.

      Reply
    2. Amy

      This saddens me so when I hear of stories like this one. We need to be doing a better job educating the public at large about why these requests are being made. Are you on FB with any of these other parents? If you’ve got pictures, I would certainly be posting them and explaining what happened. I would also consider reaching out to your local news department to see if anyone there is sympathetic to the cause. They may be willing to do something, or you could also write an op-ed piece for the local paper. We’ve got to do more as a community to educate the uneducated.

      Reply
  2. I really love how you accurately describe what it feels like to be a food allergy parent. If only all parents out there could walk a day in our shoes. I am fairly confident that they would no longer be advocating their child’s right to a cupcake. As the founder of the nonuttraveler, an advocate for all children and adults with food allergies who want to fly on commercial airlines, I am constantly stunned at the hostility that is directed to the food allergic passenger by fellow passengers and airline staff. Whether it is the right to fly safely or be safe in your classroom, where has the empathy and compassion gone?

    Reply
    1. It’s crazy to me how crazy people get over us asking them to refrain from eating a certain food for just a little while. You’d think we’d asked them to donate a kidney; seems like they’d be more willing to do that than to give up a beloved food for a few hours. I wasn’t aware of your site, but I’m following you now and am interested in what you’re doing. I’m more of a fan of working directly with the companies (such as the airlines) versus the legislators, but I’ll support your efforts however I can.

      Reply
      1. Thank you very much for your support. I am actually working in both directions as I suspect that voluntary measures served up by the airlines will be a quicker process than legislation. Having said that I think the time is right for legislation as well. Our petition for allergic passengers bill of rights is being used in a variety of initiatives, so please sign it and forward. http://www.thepetitionsite.com/takeaction/102/513/863/
        Lastly we really need other allergic families to come forward and share their airline experiences good or bad. http://nonuttraveler.com/ShareYourStory.aspx
        THis way we can build our database and convince airlines things must change. I look forward to working with you, you can email me directly.

        Reply
  3. Jessica

    I think there needs to be a clear issue between a deathly allergy and a food sensitivity. As a parent, I would never put a child in danger knowing they are allergic to a certain food. My nephew has a peanut allergy and we are very careful and very sensitive to it. No questions asked, I don’t think any parent would do that voluntarily. However, food sensitivity is a different issue all together. I have a friend whose child is sensitive to many things but our kids our very close. I a not going to change everything when she comes because she is sensitive to gluten, dairy, eggs, dyes, certain fruits, etc. This is not just a birthday cake issue. Our school does not allow peanuts or peanut products which does not seem like a big deal but I bet for those families on WIC and whose affordable meal to send with their child is PB and J, it is a big deal. Are we sensitive to that. Should I provide three or four different options to children because of their sensitivity or intolerance. Should I keep Almond and Soy milk on hand in case my kids friends have a dairy issue? At some point, we have to draw the line.

    Reply
    1. One mom pointed out to me that her child breaks out head to toe in hives when she’s in the same room with her allergen. She’ll then proceed to scratch herself until she bleeds because she’s so uncomfortable. Not deadly, but definitely torture and she should not have to be exposed to her allergen at school if she is this sensitive. I really am not a huge proponent of school-wide bans of certain foods unless there’s a child who is so sensitive to a food that that is necessary, nor do I expect other people to supply safe foods for my kids. Quite the opposite, in fact: I don’t want other people feeding my kids. But what really got to me about the woman who wrote the HuffPost article was that she was so vehemently arguing for her child to be able to have cake at school, like it’s her unalienable right. It’s not. And I find it utterly ridiculous that anybody would argue FOR more sugar, more junk in the classroom. As I wrote previously, school is not supposed to be a birthday party venue. As for your WIC point: it doesn’t hold since anyone on WIC probably qualifies for the free or reduced USDA lunch program. But again, I’m not asking for bans; I’m asking for common sense and asking parents to stop trying to convince others that serving cake to all their kids’ classmates at school is a both a right and a good idea.

      Reply
      1. Yes, WIC is an automatic qualifier for Free and Reduced lunch through FNS. And again…it is not a contest. It isn’t about who could die and who would just end up miserably sick, camped out in the bathroom. It is about the message we teach our children about their worth and the worth of others. Do you want your child growing up thinking that health needs of one are less important than wants of another?

        Reply
  4. Hi there! I just wanted to thank you for your post…this brought tears to my eyes as you were describing the birthday parties, and staying. My son is 9 and when he was younger, even about a year ago, most of the mom’s stayed. Today? I’m the only one, if he’s invited at all, because I know he isn’t to some just because of this allergy issue. Parents don’t quite know what to do about it. And about too much sugar in the classroom? Every child has a b-day party at home anyway, why do they need one at school too? Love all your alternate ideas. I hope you don’t mind me adding this post I wrote my food allergy mom story a few months ago, perhaps you can learn a bit more about me and have another ally…. I don’t write about it often but find it’s so important to get more understanding. It’s so great for all of us to connect and share ideas http://afitandfocusedfuture.com/2013/09/03/much-more-than-a-sneeze/

    Reply
      1. Hi Robin,
        My name is Lianne, founder of nonuttraveler.com. My comments on this post are 2 above you. I must say that reading your link brought tears to my eyes. It is so hard to convey to other parents and even family and friends the constant fear that we face each day. I am one mom fighting for allergic passenger rights on airlines. This is came to be after I refused to board a United plane in Denver because in the waiting area a family of five who were going to be on our flight were letting their 3 children throw peanuts up in the air, miss them on purpose and crush them on the floor and then glare at my 8 year old. We had already informed them of Josh’s allergy and moved across further away. They did this after being informed in full view of their parents. As if daring me to come near and prove my son had a true allergy. The airline refused to make an announcement . Just to say in row 8 someone had a life threatening allergy?
        May I share your post on the Nonuttraveler facebook and also on twitter. I think my followers would really appreciate your words.
        Lastly, one of the advocates I have been working with Amy WIcker recently released a movie, More Than An Inconvenience about food reactions in the air. IT really puts you in the shoes of parents and children with allergies trapped in the air. http://bit.ly/1hINbSc It is well worth watching!
        My website is :http://nonuttraveler.com
        Please sign our petition and share any airline stories
        Lianne

        Reply
  5. Cradle Rocking Mama

    This was beautifully written. My boys have myriad food issues; our IgE to peanuts in my older son is the smallest concern we have. We actually only have two anaphylactic concerns: egg, and peanut when cross reacting to birch. Our other issues are non-IgE mediated allergies that are potentially life threatening (a rare condition called FPIES in my younger son) and fructose malabsorption in my older son that is not life threatening, but makes my son malabsorb his food and makes him miserable for 36 hours after ingestion.

    So whether a life threatening concern or not, my children being exposed to trigger foods is absolutely unacceptable.

    I don’t expect anyone to cater to my childrens needs; in fact, we’ve become rather “shut-ins” who don’t get to participate in much because of these many issues. It’s too hard to try and keep then safe at their young ages in uncontrollable situations. They’re only 3 and 1 right now, so school isn’t yet an issue, but I read these sorts of stories and realize we will likely homeschool our children regardless of the difficulty that presents to us.

    How could I send my children off into a world of people who would risk their lives for a (insert appropriate cuss word here) cupcake before they’re old enough to fully self-advocate? Especially when cakes and candies and food in general have no place in a CLASSROOM in the first place?

    It’s very concerning.

    This is my first visit to your blog, but I like your writing and will be reading more! If you’d like to see what I wrote about our first experience with peanut IgE in my son, here’s where we first recognized it as a concern: http://cradlerockingmama.com/its-always-something/

    Oh, and do you remember when Renee Moilanen wrote something similar about classroom food parties last year? I wrote a rebuttal to her article, then, that you might get a kick out of. 🙂

    Thanks for this, again, and I’ll be visiting you some more!

    Reply
    1. Thanks for your comment, Carrie, and sharing your site with me. Wow, you have so much good information out there…I’ll spend some time reading through your blog. You say, “So whether a life threatening concern or not, my children being exposed to trigger foods is absolutely unacceptable.” I totally agree, and I think this is another aspect of the cake debate that those outside of the FA community aren’t hearing or don’t understand. Best of luck to you and your family.

      Reply
  6. Hi Stephanie — I enjoyed reading your post. I thought I would take a minute to describe what happened with birthday celebrations at my daughter’s school. At one point in time, children could bring a dessert to share with the classmates on their birthdays, but these desserts were only served during lunch. Because there were so many birthdays, children were often getting multiple desserts with their lunch. Well, you can just imagine how that went over with the teachers. Because of this, the administration decided to do away with treats for birthdays which obviously benefited those children, like my daughter, with severe food allergies.

    Another interesting aside, I got an email from a teacher this evening who oversees the student council. They’ve decided to sell healthy snacks during lunchtime, and they’ve reached out to me to provide them some options. Whenever there’s a school function, I’m always there making sure we’ve got safe food snacks for all the children. Because of this, they know I have a list of food manufacturers who are selling products that are allergen-friendly, free of corn syrups, dyes, etc. I’m thrilled about this development, and it’s just one more way that we can try to get safer options in the schools. The point here is that I haven’t had to beat my chest and pitch a fit to make change. They’ve made decisions based on the well-being of all the children and they’re now looking at healthier food choices. Perhaps there’s an approach here that might work for other schools.

    It’s this same approach that I’m now taking with the airlines. My goal is to create relationships and build bridges. I’m very encouraged by some of the conversations I’ve had, and I do believe we will start to see change. Our first job though is to educate the uneducated. You can help by sharing the film we released last month called “More Than An Inconvenience” which looks at the issue of flying with nut allergies. I’ve had numerous parents tell me that they’re sharing this with their school principals, superintendents, colleagues, neighbors, etc. My hope is that it will spark conversation and make things easier for all of us down the road.

    Best to you!

    Reply
    1. Amy – What a beautiful and compelling film. I just watched it and couldn’t help but get choked up hearing the frightening stories of reactions in mid-air.

      Just to clarify…You are completely right that taking a calm and flexible approach with my child’s school is more effective than beating my chest. And I have. My post was written as a vent and as validation to all those food allergy parents who read the Huffington Post birthday cake piece last week and were outraged. Sometimes the most effective way to shed light on an important issue, get attention, and make a point with the general public is to make a scene; other times, the best way to forge change is to gently and kindly work directly with those who make and enforce the rules. I commend you on using the latter approach with airlines.

      Thank you for all that you’re doing to help make airline travel safer for people with food allergies!

      Reply

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