THIS is why I fight so hard for food free classrooms….

Two words, Sabrina Shannon. This bright-eyed and freckle faced 10-year-old girl made a first person radio documentary that told her story, in her own words, about what it was like to live with food allergies. “A Nutty Tale” aired on CBC in Canada, and was widely regarded as a realistic yet powerful look into a child’s perspective of living in a food allergy bubble.

Tragically, Sabrina died two years later from an anaphylactic reaction suffered in her school’s cafeteria. Many of us who have FA children know Sabrina’s story well and the 2006 law that was passed in her honor to help protect food allergic children at school. If you are unfamiliar with Sabrina’s documentary or story, see it here. I promise your life will be changed forever after hearing Sabrina’s sweet little voice over powerful messages about what happened on that fateful day. Every single time I hear Sabrina’s story I’m literally shaken to my core and knocked down at my knees. All I can think of is that my own bright-eyed and freckle faced 8-year-old boy could easily suffer the same fate, any day, at any time. As a mother, there is nothing that compares to the knowledge that your child is in danger. Mothers of FA children have this fear, either consciously or unconsciously, every day we send our kids to school, parties, camps, field trips or even simple trips to the park. We never know when a mistake will happen. All we can do is prepare for the worst and hope for the best.

Sabrina’s documentary and her story is THE most powerful piece of knowledge I can give to other moms, especially non FA moms, about what my reality has been like since 2003. I don’t expect them to ever fully understand my reality, but I do hope they try. Whenever I advocate for stricter policies at schools, especially when it comes to enacting a food free policy in classrooms I am always thinking of Sabrina Shannon, and how an innocent misstep can cost a life. Mistakes can, and do happen. In my last post I wrote about my son’s religious education teacher handing out Dunkin Donuts as a reward during class, and I also wrote about how I was never notified and the teacher was going to get an earful from me. I talked to the director of the program who apologized and said reminders were sent home with the students (we didn’t get one) and my son was told multiple times of the reward (my son has an auditory memory issue and to leave anything to him to relay back to me is very risky…it won’t always get back to me) and parents were emailed as well (the teacher had my old email address). Add all this up and you have a perfect storm for miscommunication and a potential breach of safety in my son’s classroom. My son’s 504 Plan specifically states that no food is to be served in his classrooms without approval by me. Obviously the 504 wasn’t followed, which is a liability issue for them, and a major safety issue for my son. And for what? Donuts.

We came to an agreement that the best option for a one hour religious ed class is to reward students in a non food manner, in fact John’s idea for a reward was extra time on the playground or a game of Hang Man. Simple but effective, safer yet healthier for not just the kids with food allergies and diabetes, but for all the kids. I have said time and again I try so hard to look at the food issue in classrooms from all perspectives, never just from my own. I always hope other parents see my perspective as one based in simply trying to keep my son safe and alive, and that I am genuinely not trying to be a pain in the ass. Or combative. Or thinking my way is the only way. I am always looking at what is a good solution for EVERYONE involved. I believe in the greater good, and that people in general would never want to put my son or other FA in harms’ way, or to exclude them and make them feel socially awkward for their medical disability. However, despite my best efforts to do this, there is always someone, somewhere who passionately disagrees with me, to the point of calling me out on my beliefs, or telling others how their experiences are different from mine. I’ve heard many times (always through the grapevine of course) how my advocacy efforts are viewed as something that is more annoying than helpful. I’ve also heard how passionately other moms feel about their children’s right to keep treats and food in the classroom, that it is a part of childhood. My son’s allergies is an inconvenience to the class and that their kids are missing out on the treats of childhood.

The primary difference between my viewpoint and the other one is, well, life or death. It really is that simple. Yet, it isn’t. People want food in their children’s classrooms and they are gong to fight long and hard for it. All I want is for food to stay where it belongs; in the lunchroom. Food allergy issues aside, kids should eat their meals in one central place at a table. Their desk and classroom is for learning. Not for endless snacking and eating. Now, putting the food allergy issue back into the equation, it really should be a no brainer. (For the record, as I’ve always said, I don’t believe in food bans in the lunchroom and never have. It falsely promotes a sense of security that the area is safe and free of allergens, which of course is nearly impossible to regulate).

When I became a mom nearly 11 years ago, I never once thought I’d become an advocate, whether for my son’s medical condition or for my children’s learning disabilities and special needs. I also never thought I’d get so much backlash and negativity. Call me a Pollyanna, but I really think we are meant to learn from our challenges, to be compassionate and empathetic to others, and to always strive to think the best of each other. I believe we are all doing the best we can with what we’ve got, and that it is time to let go of anything that doesn’t serve us or others well. For me personally, I’ve had to take a long look in the mirror to see where I’ve made my mistakes, and how I can do better in my job as a mom, an advocate and a writer. It’s truly not the challenge itself that matters, it’s how we handle it that does. I may never get a food free classroom for my son, he may never outgrow his allergies, there may never be a cure, my kids might always struggle in school, I might always have to fight for IEP’s and 504′s, and I’ll probably always have to acknowledge the sneers and jeers for my efforts. That’s OK with me. It’s all worth fighting for. And children like Sabrina Shannon and John remind me to never stop trying.

 

 

30 Responses

  1. Good for you, Kelly, for not letting the mean people of the world get to you! You have to protect your son, no matter the cost. I agree with you completely- no food in the classroom, just the cafeteria (where it belongs)! Since I developed peanut and tree nut allergies as an adult, I never needed accommodations in the classroom, but sadly, that nonsense doesn’t stop at childhood. Food is everywhere in the workplace and at work events (networking events, working luncheons, dinner parties with clients, etc.) I’ve heard plenty of insensitive comments, and have felt purposely excluded at times, even though I’m always willing to bring my own food, not eat, or be responsible for asking the various questions to caterers, servers, cooks, etc. Now, of course, there are people who are super-kind and want to accommodate me, and just need some food allergy education. I’m extra grateful for the friends, co-workers, and family members who want to include instead of exclude!

  2. I am so very proud of you and the work that you have done for John and other FA children. Nobody chooses this and I know that what you are doing now to bring awarness is not easy; however nothing meaningful is ever easy. Thank you for your tireless effort in bringing it all together.

  3. I am in tears just reading your post. I want to forward the link to all my friends and family to help them understand better what it is that we all live with every day, having children with life threatening food allergies. It is so hard!!! Our entire culture is so amazingly food based – which is so fun if you’re not dealing with food allergies. Between parties, pot lucks, bake sales, ice cream trucks, picnics, restaurants, snacks at ball games, movies, farmers markets – it often feels like we are living with a ticking time bomb that we have to defuse every time we leave the house with our children. Your work for John is really inspirational. Thank you so much for sharing your triumphs and your despair….and your recipes!!

  4. hi kelly,

    thanks for sharing.. I just share this link to my FB and I have 104 friends.. I also added a short message about how I felt about this sad story and how it related to me. If only one parent read it and got touched by that, and decided to do something different at the school, I feel honored that I helped fight this fight.

    Keep fighting for our precious kids ! share this your fb or social networks !!

  5. I don’t have a child with allergies and my kids are not yet in school, but I’ve had concerns about my children going to school and not having any control over the food/snacks/treats they are exposed to. I’m interested in following this and would support parents having more control over what children are offered at school.

  6. Oh boy. Tears with my coffee. I’ve heard of Sabrina’s Story but this is the first time I’ve actually read the entire story and heard the audio.

    I’m also one of those people, Kelly, who advocate strongly for all the same things that you do only to be met by angry and insulted parents and school staff who think I am a combatative, my way or the high way, royal pain-in-the-ass. However – I know that there are also quiet people in the audience who are cheering me on and that is where I find a little extra courage.

    But one of the quotes from Sabrina’s Mom is what truly reassures me that you – me – all of us – are in this for the right reasons: Shannon reminds us that until EVERY procedure, plan and prevention measure is in place, can’t we say that we did everything possible to prevent a child’s death.

    When are those National Guidelines coming out anyway?

  7. I can’t agree more! I hate food parties or accentives. During Christmas the kids were sent home a reading sheet with the promise of a pizza party for finishing it. My son came home and said “I’m not doing it, I can’t eat it anyway” After promising to make him his own pizza for the party he read the list, but it’s not the same and after talking to the teacher’s they just said “We weren’t thinking” This week, it’s the same thing, My son’s class has 3 FA kids, dairy (mine), peanuts, and eggs. They are doing a report show and after having cookies, my son asked if they would be safe cookies and the reply was “I don’t know” After talking to the teacher, they said they would have oreo’s for mine and come up with something else for the other two. I said I will make safe cookies for the whole class. “Just make it for the AF kids” Why? Why when you say, I will make allgergy free treats, people think it’s ‘health food’ and will be gross. Since I’m using your cookie recipie we both know they’re not (in fact I started using dairy free margarine instead of the cisco and they come out with an even more ‘cookie’ look to them. The teachers don’t think about cross contamination or anything like that. Last year, when we first found out about the allergy, at the end of the year they were going to do an ICE CREAM PARTY! The teacher was great, she told the parents about his allergy and suggested something else, they however wouldn’t budge (later found out it was because they were doing it for thier other kids and didn’t want to be bothered with coming up with something else) “Oh, we’ll just give him a popcicle” The teacher then called me to give me a heads ups. I’m forever grateful for that teacher, after hunting the health food stores and a local supermarket, we discovered the wonderful world of Toffuiti! So keep up you’re work Kelly, it’s deeply appreciated!

  8. I COMPLETELY agree with you on the food issue. I was so happy this year when our school adopted a “nutrition” policy which supposedly bans sweets from the classroom, however it was apparently only adopted in name and every birthday is still celebrated with cupcakes from home. You should have heard the reaction when it was said that candy couldn’t be handed out at parties anymore! I honestly think there would have been less of a reaction to them increasing classes to 50 students. I understand that there is an obesity epidemic among children, but we are also facing a food allergy epidemic, so why isn’t it being treated as such??

  9. Kelly, thank you for making your personal stories and these tragic incidents public. without this , FA parents fight the battle feeling isolated & alone, with school districts completely tuned out to thinking it could ever happen under their roof. We began the FA battle over 8 years ago when food in our elem. School surrounded every special event, every class project, every fundraiser, every class birthday, reward, etc our kindergarten daughter was asked to carry her epipen everywhere including on the playground as a means for “keeping her safe”. For each good event that we(1 other mom and I ) exchanged for an inclusive and safe fundraiser, a new food event was born. the word inclusive, meant “taking treats away from the other kids” to many parents who refused to understand the risk for their child’s “reward”. The spiraling downward of self esteem peaked at third grade with my daughter screaming in emotional exhaustion, that she hates herself for having FA ‘s. Now she’s in 6th grade, in private, nut free school where everyone accepts a safe environment. No questions asked; just part of the learning (and part of the healing.)

    I hear that our past school is now “safer” than just a few years ago. What did it take to get there? Years of debate, creative thinking, letter writing, chairing class projects and fundraisers, advocating for all kids that needed a voice when there were no listeners, and daily praying that we wouldn’t be getting the 911 call. I am heartsick for sabrinas family and what sabrina herself endured. I hope that her story is published around the world for those that still need to learn how to listen.

  10. It’s so refreshing to read your blog, Kelly. It makes me feel like I’m not alone in my thoughts, feelings and everything else that goes with advocating for your child with FAs. Thank you for sharing your beautifully written and intelligent posts. I couldn’t agree with you more on EVERYTHING you have to say. I guess we just have to keep focusing on the positive people that surround us and the people who truly care because the mean, insensitive, selfish people aren’t going to go away and that’s just a shame.

  11. Let me just say Thank You for fighting the good fight for our food allergic kids and for helping me and other moms who deal with food allergies feel a little less alone.

  12. Kelli, keep on doing exactly what you are doing, fight for your kids with all you’ve got. It’s what we all do every day and will continue to do until people get it. We are not going away, we are not going to shut up, we are not going to stop until our kids can go to school, or the library, or to an Easter egg hunt and just be kids. Good job.

  13. Kelly, I feel exactly the same way. The bottom line is that it’s our job to do everything we can to keep our kids alive while they are in the care of others, and I will never apologize for trying to protect my child. I am always polite, but assertive, and if that rankles someone, it is their choice to take offense. Ironically, I feel my child is more safe that some others who don’t have the same protections as mine, simply because the parents are uniformed of their rights to a 504, or because they underestimate the potential for harm due to previous “mild” reactions. (These are the kids we hear about dying most often) I advocate for change as much for these kids as my own. The new statistic is 1 in 12 kids has a FA. Food in the classroom is a recipe for disaster. What will it take?

    At our last 504 meeting, we had a panel of professionals (Ph.D’s and nurses) tell me with straight faces that parents visiting the classroom cannot be restricted from bringing in coffee drinks with loads of cream because……calcium deficiency is a big problem. They are saying this to a mother of a child who could DIE from ingesting a drop of it. This mindset makes it really difficult to see the good in people. I haven’t seen a lot of compassion or empathy when it comes to our school system. For us, it’s been a fight every step of the way with one step forward and two steps back. It’s exhausting, but worth it. It’s thrilling to know that others have had different experiences, I only know mine.

    I wish non FA parents could experience the terror of realizing you left home without your cell phone while your child’s at school, or the panic of hearing a siren in the distance, or the way your stomach drops when you see the school’s name on your caller ID, or simply kissing your child goodbye each day knowing that something could go terribly wrong and you could never see them again. These daily worries never enter the minds of non FA parents, and I wish they were more grateful for that, and less condemning of us who have to make extraordinary measures every time we leave the house with our children.

    Thank you for this post.

  14. I feel your pain as I just recently sat down with the principal when for the umpteenth time something was handed out as a reward to the kids in the classroom. When I strongly suggested that my son’s wash their hands after lunch…she responded that it would take too much time. When I told her that it really wouldn’t, and I am only asking it of my child’s class, she conceded and said she would “try.” I had to truly take baby steps with her and while I made some headway, I am not reassured. Luckily, I have made my 6 year old pretty vigilant and he will take the candy and bring it home for me to check. I know I can’t always rely on this, however. These are the missions we didn’t ask for and yet somehow we discover a dormant inner strength that propels us forward.

  15. To Kelly and the other FA parents,

    My Dairy/Egg/Nut/Sesame allergic son is getting ready to start preschool in the fall in an elementary school building. They’ll eat in the cafeteria, but I’m guessing they have an afternoon snack in the classroom. My kindergarten daughter has snacks in her classroom every day. Have you all fought to eliminate that from the kids’ day? Or restricted the snacks they’re allowed to bring? How/when did you go about setting up 504s and such for your kids. I’m terrified to put my kiddo in a classroom… Any advice/information would be much appreciated!

  16. Kelly – Thank you for everything you do – the advocacy, the recipes, the words of wisdom. While many rebel against the common sense changes that are necessary not only to keep our children safe – but to make them healthier in the long run – there are many of us that will keep fighting the good fight. I have a 3 year old son severely allergic to dairy, and I cringe when I hear things like a previous poster having a school say it’s other parents’ rights to drink their coffee in the school without regard to a dairy allergic child. Are you kidding me? Yep – much more important that I get my caffeine during that 30 minutes I am at the school than to keep a child safe. How absurd.

  17. I was looking for a recipe for cookies for my four year old son, who is severely allergic to egg, milk, (any dairy product and all products containing any trace of milk, nuts and shellfish. I found your page and I think what you’re doing is fantastic. Ryan, my son, just started pre-k last year, we were hesitant about it because no one is going to pay attention to what he eats or touches like his parents, but he needed to be around kids, as he is our only child so far. Since he’s started school, there have been 3 different occasions i have had to rush to his school due to allergic reactions. One of which in where his teachers gave him milk! He was smart enough to ask if it was cow milk or soy milk and didn’t drink it but not after he had touched the carton and gotten milk on his hands. I went in another day and there was an open bag of cheetos right in front of him. I know it’s hard to watch every child but, I feel like if there’s a kid that’s going to die if he eats a bite of the wrong thing he should probably be watched more carefully at lunch time. It’s great to know there are other people fighting for the same cause, and understand what it’s like.

  18. I agree with your post. You really express your thoughts well. I have an 8yr old with treenut and peanut allergy. I’d like to see food free classrooms too. We do have a nut ban at our school. I do like that because, I have found that there is definitely awareness and understanding. One of the hardest things for others (nonFA parents) to understand is the cross contamination issue. It’s assumed that because something doesn’t have a “nut” in it, it’s safe. That seems to be hardest for people to comprehend. One other thing that gets me, is that if I tell someone my daughter has a nut allergy, they assume that only means peanuts. When I use the term treenuts, it’s like I’ve said something foreign. So then I go through the whole list. Although, I still feel that people think I worry too much. But I can’t help it, it’s still scary to think that food can cause harm.

    Linda

  19. Hi Kelly and Community,

    My husband and I were just chatting this evening about your blog post. We were reminiscing, we’re in our early 40s, about how were were rewarded and celebrated in elementary school…stickers, those cheap foil stars, extra time on the playground or an end of the day game of 7-Up.

    Now as a Mom of a child with multiple food allergies (dairy, eggs, peanuts and tree nuts and tactilely allergic to dairy), I dread classroom food soirees and wonder…why did we start to reward and celebrate with food so much?

    What will my child remember more?

    Boy, that was a great tasting piece of cake we had for Billy’s birthday?

    Or

    I loved it when we always played that extra game of Duck, Duck, Goose??!

    From what all I read in pop psychology, they remember the time that was spent, not what was served.

    All parents need to remember that! ; )

  20. Kudos to the restaurant Bob’s Your Uncle in the Iowa City area! My daughter and I were on a road trip with her infant and her 3 yr old daughter and got caught in a storm and decided to wait it out over dinner. My granddaughter is allergic to eggs, dairy, corn, nuts, potatoes and rice. The folks at the restaurant actually brought the recipe for the pasta sauce out for my dau. to read AND the can of tomato paste so she could be sure it was safe! and cooked the vegetables without butter for us! They were so understanding and helpful it nearly brought my daughter to tears with gratefulness!

    There is hope – there ARE some understanding people.

  21. Although everyone is entitled to their opinions, any parent who has been put in the situation of having to deal with a child with food allergies should be able to do what they feel is best within reason to protect them. After all, life or death issues should trump everything else.

  22. For people who say they haven’t seen a lot of empathy from their school systems, I think a lot of times you would find more if you put less emphasis on asserting your “rights” with 504 plans and more on finding workable solutions. I think 504 plans give a huge false sense of security much the way a food ban does. I find building relationships with the administration, classroom teachers and other parents goes much farther. The room moms in my son’s second class have gone above and beyond to find treats that work both for him and everyone else this year not because we required them to do this (I find it safer to provide him his own) but because they liked him and wanted him to feel included. Once they got a taste of how difficult it can be to find safe treats, they were a lot more aware of how big a deal this is for us. This happily has also translated to parties beyond school.

  23. I am so weary of food being the focus of celebration with kids! I almost sang with joy when my son handed me the bag from his class pinata today and it contained silly bandz and a ball!

  24. It is extremely hard to go to school with a nut allergy. I am a high school student and have suffered my whole life from the allergy. Yes the nurse tries by putting a nut free sign on the door but that does nothing. None of the teachers enforce the nut free rule and even some of my teachers eat nuts in class. The kids in my grade are the worst. They are constantly bringing nuts into class and eating them right next to me. It is embarrassing to tell them not to eat them so i don’t but I honestly don’t think that they would listen anyway. Each day i sit in class hoping I don’t have an allergic reaction. Just today i had an allergic reaction at school. I felt my throat starting to close and I had bumps on me. The nurse thinks that it happened because the person sitting at my desk before was eating nuts which I completely believe. At the beginning of the year one of my teachers tried to get a student to stop eating nuts in class which was the first and only time that she did. He replied with it’s not my problem it’s theirs I don’t care if they have an allergic reaction. This kind of selfishness makes me very angry. He does not understand that worry that i and so many others have to deal with everyday. I get left out in class when people bring in food which I can’t have in fear that there are nuts in it. I get made fun off for having a food allergy and it really hurts. I have no control over it. Keep fighting for your sons rights. I truly hope that you succeed so that your son doesn’t have to suffer with what I have to.

  25. Its just so hard to read… every food allergy parents worse fear… as a teacher I am so saddened to see the teachers not create the safest environemnt possible…. this leaves me so angry and sad… but thank you for your advocacy!

  26. Pingback: A New Perspective on Children’s Food Allergies | Featured News Articles from Cosmo-News.com

  27. My son does not have food allergies, but I do not think rewarding kids with food is a good idea period. I don’t think my son has ever even had a whole donut at once ever. If we eat stuff like that, it is almost always a homemade ‘healthier’ version and we have tiny portions. I don’t appreciate someone feeding him junk food. I used to be a teacher and I never handed out food in such a manner. We did have parties that were mostly planned by room mothers, but I don’t much like these either. Last year when there were parties, I found myself swooping by with alternative treats for my son because he doesn’t react well to overly sugary, processed, chemical laden, full of food dye food. (what kid really does perform their best with this in their body?) Why schools think it is acceptable to offer this stuff beats me. With current obesity rates, food allergies, and concerns with links to ADHD and autism and gluten and casein issues, you would think policies would have changed.

  28. My son is allergic to eggs, cats and dogs. He is 5 and will be starting kindergarten in September. I knew come school I would need to pack for him and make sure his teacher is fully aware of his allergy but hearing this story scares me. He is pretty good at making it known he is allergic to egg but there is so many things it is in that I am beginning to worry he will be given something he isn’t aware has eggs and that his teacher will be negligent. My plan was for the teacher to contact for any party, birthday or other event where treats/snacks would be given so I could give him something to take. It looks like that doesn’t always work if the teacher doesn’t commit to it. What is a 504 and an IEP, should I be checking into these?

Leave a Reply

Your email address will not be published. Required fields are marked *

You may use these HTML tags and attributes: <a href="" title=""> <abbr title=""> <acronym title=""> <b> <blockquote cite=""> <cite> <code> <del datetime=""> <em> <i> <q cite=""> <strike> <strong>