Separate is indeed not equal! Food allergies & bullying. |-o-|

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I haven’t blogged about food allergies lately, so it’s time.  Luckily the other day, a great post popped up in Google Reader, with a striking headline:  We Have Come Too Far To Forget, Separate Is Not Equal

I happen to consider the author Thanita a Twitter friend, and a proud member of the #FoodAllergyMomArmy.  It’s got a great message.  Obviously the first thing it brings to mind is racism, but it can now be applied to any group facing discrimination.

As I’ve said before… I’d like to see any changes brought forth from a consumer side of view, not a legislative one.  When we’re dealing with schools, parents really need to get involved and not just the parents of the food-allergic children.  Legislation in this area may be the best answer as far as schools are concerned.  After all, it’s a gub’ment institution, right?  (Things like the School Access to Emergency Epinephrine Act are extremely important to protect food-allergic kids, as well as any that may have reactions to thinks like latex or bee stings.  Pennsylvania now seems like it’s on top of things.)

All in all, some earnest thinking about the whole thing will bring forth a hopefully easy decision:

When other parents tell the family of the anaphylactic child to just “home-school, it’s safer, we’re looking out for your best interest”, it’s a joke. Separate Is Not Equal.

When a child is forced to peer over a sea of smiling, laughing, socializing children, all the while sitting on a separate table alone, “for his/her safety”, it’s Separate and Not Equal.

We have to ask ourselves, how far have WE come since the 1950’s? Would we be doing this to a child with autism? To a child in a wheelchair? To a child with dark skin? If the answer is never, then do not do it to a child with an anaphylactic disability.

Think about that.  There’s a lot of buzz about bullying lately, & it certainly falls on food-allergic kids.  For an example, read this awesome article by another #FoodAllergyMomArmy member and cool Twitter friend Libby about bullying: Bullies, Food Allergies and The Force

This is heavy:

By the way, just one mistake can be fatal. Have I mentioned the shocking levels of stress in parents of children with food allergies?

So this morning I dressed my son in one of his Star Wars t-shirts and talked to him about Katie and how it’s ok to be different and not ok to tease or bully someone else. I packed an allergen free lunch, gave him hugs and kisses, told him I loved him and sent him off to school with a prayer that he would come home safely, something I never take for granted.

To the kids with food allergies and their parents, may the force be with you. You’re going to need it.

One mistake can be fatal.  Let’s all help make sure it doesn’t come to that.  These food allergy moms & dads (& brothers & sisters, etc.) are badass, I tell you.  It takes courage to muster up the confidence to put together a safe plan for your kid(s), and to be strong for them when you probably just want to break down & cry about it yourself sometimes.

Food Allergy & Anaphylaxis Network

Prevent Bullying

It’s up to all of you reading to inform schools, restaurants, and everyone that you’re not going to exclude yourself or your kids from society or live in fear from your food allergy.  It’s up to you to be ever-vigilant and cautious, but it’s all so up to you to not back down or let your kids be ostracized for being different.

Now, where can I get an Epi-pen case that looks like a lightsaber?

Lightsaber

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33 thoughts on “Separate is indeed not equal! Food allergies & bullying. |-o-|”

  1. OK, OK, I get it. Here’s my problem:

    Adults with allergies, it is your responsibility to know what it is that you are allergic to. At a restaurant, it is your responsibility to ask intelligent questions at the point of ordering to avoid any nasty issues. It is only then the restaurant’s responsibility to follow through with the proper information and proper food handling.

    Children with allergies, it is your parent’s responsibility to provide you with allergy safe lunches and snacks. It is your parent’s responsibility to make you aware of the seriousness of your condition and educate you on how to conduct yourself and proper use of your epi-pen. It is also your parent’s responsibility to inform the school and the teacher, hell, even the lunch ladies about your allergies and proper use of the epi-pen. Only then is it the teacher’s responsibility to follow through in providing guidance. They cannot watch over you constantly. The parents of children without allergies cannot be held responsible to make allergen free snacks. You, the child with allergies, should know that you cannot partake of anything not approved by the parent.

    I am not, in any way, trying to downplay the seriousness of allergies. I know for a fact that they can be, and are deadly. I went to school with a kid who has a peanut allergy, a deadly one. I grew up with him, went to school with him from pre-school all the way to graduation. I remember because he always had his own lunch and would never trade food with any of us. He was completely aware and responsible for his allergy as early as Kindergarten. His Mother would bring in allergy free snacks for everyone for our holiday parties. I’m just trying to place responsibility where it is due. We can’t stop the group from enjoying something just because one person can’t, and there are ways to include everyone without hurting anyone.

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    • Oh, the 1st line of defense is undoubtedly on the food-allergic person or their legal guardian. I think these blogs (and me in turn) are saying don’t be so quick to place these kids in a bubble. It’s like shutting down or giving up, and in the long run can’t be healthy for the kid.

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  2. @Mike -> Believe me, most food allergy parents do everything you mentioned… and about a thousand more things that would never occur to you in order to make sure their child is safe and included. You would, I venture to say, be rather surprised by the response those efforts receive. From schools, from teachers, from other parents. Would it surprise you to hear that after offering to provide the food for every holiday party during the year (which, I think we can all agree is an enormous expense to take on alone, not to mention the hours of labor since most food-allergy friendly foods must be made from scratch) other parents in my child’s class were angry because I was “hogging” all the opportunities to provide food? Should I have tried to explain why it’s important to a three year old to have a cupcake that looks like everyone else’s? Equally important, should I have tried to explain (again) that it is UNREASONABLE to expect a small child to fully grasp the seriousness of a life-threatening allergy? You may have seen reports about how no matter how much gun safety a child is taught, when there is a gun within reach they will pick it up. Imagine instead of a gun, it’s a friggin’ cupcake with sprinkles and Elmo’s face is on it. Right.

    Of course we teach our children about their allergy. Of course we do. Of course we try to educate and educate and educate every person they come into contact with. I am just sick and tired of being the disability that gets kicked around. Why is it ok for people to go bat crazy about eliminating peanut butter from preschools to protect the ever-increasing number of children that it could kill? In what universe would it be ok to respond that way to accommodations being made for a child with cancer? Or in a wheelchair? Please. You’d get lynched for saying anything against any efforts made to secure accommodations for those kids. As you should. Why are our kids’ lives somehow less valuable? Less valued? Is it because they look and sound and play like every other kid? That you can’t see how serious it is until there’s been a monumental mistake? These are not the kinds of things we want to be proven right about, ok? My dearest wish has always been that the people who think I’m crazy for taking the precautions necessary to keep my child safe, will never be given a demonstration of just how serious it can be when a mistake is made. That means I’ve failed.

    And I’m not willing to risk my child’s life just to be proven right.

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    • Thanks Lissa, “My dearest wish has always been that the people who think I’m crazy for taking the precautions necessary to keep my child safe, will never be given a demonstration of just how serious it can be when a mistake is made” is quite a heavy statement. I’m glad I only have to worry about myself, not a small child.

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  3. Right, but I don’t remember ever feeling like he had been singled out or bullied because of his allergy. It was normal. I feel like calling more attention to these kids now is causing the bullying. For me, we’re talking about the late 70’s and early 80’s. What did we do differently then?

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    • There weren’t so many of us then, and your parents taught you not to be an ass.

      There are stories out there of kids waving PB&J in another kid’s face… which is effectively a weapon at that point. Parents of the non-allergic kids need to teach their kids to be respectful & of the severity of the situation.

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  4. @Mike – Thank you for your comments. I can understand how some may feel “it’s all the parent’s responsibility”. However, when children with this hidden disability attends a public school, it IS the school’s responsibility to provide Free and Appropriate Public Education (FAPE) in the least restrictive environment. It’s because the Americans with Disabilities Act Amendment Act of 2008 changed the language to include “eating” (among others) as a major life activity. Therefore, because food allergies substantially effects the major life activity of eating, breathing and digestion, it is considered a disability.

    By law, students are protected under Section 504 of the Rehabilitation Act of 1973 which states that children with a disability may not be excluded from programs and activities that receives federal financial assistance, like public schools. If the schools have allergens in the classroom, then the food allergic student cannot access the class due to an unsafe environment and therefore the school is not providing FAPE.

    Therefore, in order for the allergic student to receive FAPE, the environment must be safe which means food being brought into class cannot contain the allergen and it is the school’s responsibility to dictate that to the other parents (room parent etc) without divulging why (due to medical privacy). Add to the fact that some families are financially disadvantaged and cannot afford to supply the entire class safe foods. Therefore, it is much more financially reasonable to have food free parties and rewards or have the school (based on the child’s 504 plan) dictate to the rest of the class what is safe to bring. If it’s unsafe, keep it out.

    A child with a disability is already at a disadvantage, especially if the disability is hidden (not visible to the naked eye). A new study conducted by Mount Sinai resulted in a surprising amount of food allergic children being bullied and even threatened by both peers and staff. In Washington, a student was arrested for assault after he smeared peanut butter on a peanut allergic student.

    Don’t even get me started on the emotional impact that food allergies has on a child. There have been quiet a few Quality of Life studies showing that food allergic children have a lower quality of life than those with insulin dependent diabetes.

    Mike, I can appreciate your view. However, things have changed. The prevalence is higher and tolerance lower (1 in 13 kids have a food allergy as appose to 1 in 110 has autism). The amount of allergies that a single child can have are multiple and not just to one food. Food allergies has become an epidemic and the general public is just now finding out. “We” (food allergy community) are where Autism was about 10 years ago where families didn’t want an autistic child in the same class as their little Johnny or Suzy. Now it’s a more acceptable practice to include and mainstream kids on the spectrum. However, now “our” food allergy kids are being told to be home schooled and they’re not wanted.

    Here’s the study from Mount Sanai on bullying kids with food allergies:

    http://www.mountsinai.org/about-us/newsroom/press-releases/new-study-finds-that-children-with-food-allergies-are-targeted-by-bullies

    I have several QOL studies but they’re PDF. I’d be happy to email them to you if you would email me at thanita@advocatebyfate.com

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    • This is interesting & needs to be spread around…

      By law, students are protected under Section 504 of the Rehabilitation Act of 1973 which states that children with a disability may not be excluded from programs and activities that receives federal financial assistance, like public schools. If the schools have allergens in the classroom, then the food allergic student cannot access the class due to an unsafe environment and therefore the school is not providing FAPE.

      I bet that not a whole lot of people know/understand that.

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    • If you want your child to be a bully magnet, dictate to other children what they can and cannot eat in their own lunches. You are asking every child to alter their diet because your child is “special.” If your child is so allergic that he or she cannot be in the same room with someone eating a particular food, then you are negligent by placing them in a traditional classroom setting. If your child has an allergic reaction because another child didn’t wash his hands well enough after last night’s peanut butter sandwich, that is your fault for sending him or her into a potentially unsafe environment.

      Do you really expect the school to maintain a 100% allergen free facility? It simply isn’t possible even with the best of intentions. Also, your child is costing the school much more money than other students. Are you helping pay their extra costs? Why should an entire school be punished because they are unfortunately burdened with the enrollment of your child?

      Additionally, you could very well be negatively impacting students who come from cultures that include said allergen in their regular diet.

      I recognize that your focus is your child. I recognize what the law requires, but it doesn’t make it right. It is selfish to demand that the school spend extra money protecting your “special” child when that money could be spent on staffing, text books or other school improvements.

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      • M, I’ve spent far too long being polite to people like you. Perhaps it’s this glass of wine talking, but to be honest… you’re just kind of an a-hole, man. I’m “negligent” because I put my child in school and expect her to be reasonably safe? I’ve looked PRETTY darn closely at the constitution and the Bill of Rights and at last glance, there was no proviso for PB&J sandwiches in school. Or cupcakes. I do not pledge allegiance to the flag of the United States of How You Want the World To Be, my friend. No one here said we expect any place to be 100% allergen free. That’s a nirvana we have stopped searching for, pumpkin. We just ask for a little compassion, a smidge of understanding and perhaps a dollop of “I will do the BARE MINIMUM to try to not kill your kid today.”

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  6. Mike, I completely agree that bullying these days is a completely different animal than it was for us in the 70’s and 80’s. To the point where even the President and the First Family have come out and tried to explain to *our* generation that bullying for kids now is not what we remember from our childhood. This is no different for food allergic children than it is for homosexual children, or for any child that has been singled out by his/her peers for one reason or another. For whatever reason, bullying today is more severe and needs to be addressed and taken more seriously by those adults in a position to effect positive change. I think that’s all we’re (the food allergy community – or, as Eric affectionately refers to us, The Food Allergy Mom Army) trying to do for our kids.

    The real difference? The scary truth? For these food allergy kids, it’s truly a matter of life and death. We read headlines – tragic headlines – about kids who were bullied to the point of committing suicide. That’s sickening and awful, and as such garners headlines. The kids who bully food allergic kids are handed a gift-wrapped and ready made weapon: the allergen for which they are being bullied. How easy is it for these bullies to take it to the next level with a PB&J? No one in your school would have thought to do that, right?

    I wish that were the case today.

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    • Even as an adult, I wish I had a dollar for every time someone has oh so humorously offered me shrimp, lobster, crab cakes, etc. It doesn’t come from a mean place at all… but it’s almost like a weird coping thing where you can’t understand it, so you joke about it.

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  7. I do wholly understand railing against someone taking a perceived grab at my freedom to eat peanut butter, but we all need to work toward a solution that works for all parties involved.

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  8. It’s funny. I have heard numerous stories where someone had the “You can’t take my peanut butter (or cupcakes/cookies/whatever) away from me!” response… until they realized that the allergic kid is a kid they know already. Then it suddenly makes sense. I’ve been a very outspoken advocate in every aspect of my life, including Facebook and I can’t tell you how many people have sent me notes to let me know that they appreciate all the information because they never would have known or understood without “watching” our family go through this. People who have now been proactive about asking teachers if there are any allergies in their kid’s class, and even people without children who now ask guests if they have any allergies or other restrictions before hosting a dinner party. I feel like I’ve done some good in my small corner of this world that way. If we can all commit to doing that, we will eventually make real progress.

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  11. Pingback: Another Food Allergy Tragedy: Ammaria Johnson | World (and Lunar) Domination

  12. Pingback: This is why we need epi-pens in schools! | World (and Lunar) Domination

  13. I’m afraid “M” is completely misguided, misunderstood and unaware about accommodating our food allergic children. For one, we DO NOT dictate what other kids can eat for lunch. I personally HAVE NEVER told a student not to bring xyz for lunch. There are ways to address this safely and inclusively for all students. It’s unfortunate, that by your tone, you have such a hate for our “special” kids who deserve these accommodations not only because it’s the law, but because it is their life at stake.

    For the record, we as a food allergy community, do not believe that ANY ENVIRONMENT IS 100% ALLERGY-FREE. We are not that naive. Simple strategies like hand washing minimizes risks and is not a disturbance or inconvenience. It is good hygienic practices, which I hope you teach your family.

    Finally, as far as cost, it costs nothing to accommodate our children. NOTHING. No special equipment. Nothing. So the next time you want to spew your hateful comments all around the internet (yes I am aware you left me this very message verbatim), you should do some investigating and fact finding because your comments are based on nothing but assumptions.

    I am interested on your view about accommodating students with developmental disabilities and autism? Do they have any rights, in your eyes? I think I already know the answer to that. I also have a feeling, you will never read these responses. However, I pray that your child(ren) do not have or develop food allergies. They’ll need a lot more help than the type of “understanding” you’re giving.

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  14. Quote…

    Finally, as far as cost, it costs nothing to accommodate our children. NOTHING. No special equipment. Nothing. So the next time you want to spew your hateful comments all around the internet (yes I am aware you left me this very message verbatim), you should do some investigating and fact finding because your comments are based on nothing but assumptions.

    BAM!

    …so this person is creeping/trolling on other sites?

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  15. You completely missed the point. Congratulations, you successfully wrapped yourself in your own perspective. Step out and reevaluate or you will never have meaningful dialogue with those outside of your bubble.

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  16. Sure, simple allergies such as lactose intolerance and reactions to bee stings won’t cost the school extra money. However, ridding a school of particular ingredients (such as is the case with severe allergies to peanuts) costs the schools large amounts of money.

    For example,

    http://www.reuters.com/article/2011/03/23/us-peanuts-allergy-school-idUSTRE72M80T20110323

    Additionally, the children in the classroom have to take time out of their school day to RINSE THEIR MOUTHS OUT just in case they have traces of peanut. Is that fair? They went so far as have a peanut sniffing dog come into the school. Do you think that was free?

    Why should someone alter their lifestyle and diet to accommodate one child out of hundreds?

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  17. “M”,

    1. Again, do your homework.
    2. The cost of peanut sniffing dogs are usually left to the burden of the family and they cost thousands.
    3. Painting ALL food allergy accommodations with a broad brush (such as using the Florida incident) shows the amount of fact finding you actually have done.

    You are obviously not here to be a productive part of the conversation but rather to only prove your point of view; that food allergic kids are not welcome, in your eyes. And I for one, have spent one too many comment posts attempting to educate someone that does not want to be educated. Therefore, I wish your family well. If you ever find yourself in a situation where you or your child developed food allergies, you know where to go for help. We never turn away those in need. You will still be welcome.

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  18. @M: Wait, you are using an extreme story of parents protesting against a 6 year old girl to be pushed out of school due to her allergy?

    The same ways my kids are ostracized for being military kids? “Let’s not be friends, they’ll just move again anyways?”

    The same way I was treated as a child for not being caucasian? “She is not worth a scholarship because she is not ever going to college?”

    The same way I was treated in Alaska, “She is just Native. It won’t be long until she ends up on Second Street. You know, the street only where Natives drink?”

    Or even to how I was treated when I married someone not of the same cultural/ethnic background, because, I mean, let’s face it, inter-racial marriages have only been accepted for the last 50/60 years anyways, right? Such horrors!!!

    I am always amazed at the extent people will go to never have change. To never have their bubble burst, to never experience inconvenience.
    “What, nut-free? WHY! Little Timmy only eats peanut butter!!!! He’ll starve this school year!!” “I have to take off my shoes before entering your home? WHY???” “There are protocols to dancing around the drum? But why??”

    I can show compassion for Little Timmy because I know that there are some kids like that out there in the world. How? Because I am a parent that is heavily involved my child’s education, not just my child’s, but their cohorts as well. One cannot tell me that my child can grow and learn without their cohorts doing so as well. In order for all students to continue advancing, all must have that support. I refuse to let children stagnate. You know, become stale and set in their ways to where the water becomes murky and foul. Like the parents exhibited in your case.

    My child is my child, yes, he has a food allergy. I will do all I can not to have him die today due an exposure. The same way I make sure he wears a helmet riding his bicycle, looks both ways before crossing the street. He is highly educated on what his allergens are, what they LOOK like, in what foods they can be in, and he knows to read labels as well as not eat unlabeled foods. Thankfully, our current school is awesome, and they work on keeping him safe, like they do for all children, after all, my child is in their care for the day. Strange to write, but we actually have a full-time nurse at our school, not for the food allergy kids (as there a few), but for the diabetics at the school. (Our current state has a high rate of pediatric obesity, and this is our first encounter for a school to have a full-time school nurse.)

    “Why should someone alter their lifestyle and diet to accommodate one child out of hundreds?”

    Because you will not be accommodating just one child, you will be accommodating them all: to have compassion in caring for others. Innovation to problem solve solutions to how all their lives can improve: whether it be simple as personal hygiene (hand washing) to a science project explaining how this mere molecule of a substance leads to the shutdown of multiple organ systems if medical treatment is not administered in time. Enrichment that people are different, their cultures are different, their foods are different. This encourages children to know where their food originates from. Often children develop healthier eating habits (America’s children are flirting with obesity, but that is another topic) because once labels are read, one becomes more informed on what is consumed.

    But most importantly, if there is a classroom working together, that classroom is able to further grow not just in meeting grade-level skills, but exceeding them as well. Parents in your article’s main complaint was that their children were losing 30 minutes a day, 30 minutes of education. Not sure about you, M, but when I was growing up, but I had discipline. Discipline’s etymology gives us the meaning from the word “disciples”, meaning of “to learn.” In order to excel, children cannot expect discipline to only occur at school, it must continue at home as well.

    Students able to apply themselves at home, working cohesively at school, would definitely have more than 30 minutes to spare. I am still amazed at how angry parents were for hand washing. Seriously, children should already to know to wash their hands after a meal. I can understand a bit of resentment for the mouthwash, it is hard enough to get littles to brush their teeth. Most importantly, these were the parent’s opinions. I am still ever curious to how the children felt. I was amazed at the lack of objectivity in the original media reports in comparison of the edited that are now available online. It is well documented how media reports a story sways heavy on public opinion as well.

    I have moved multiple times (military spouse), encountering many schools in varying school districts. The one thing that all these schools had in common were not only their willingness to accommodate my child’s allergies, but their ratings of 8 to 10 (highest ratings) on greatschools.org in achievement on local, state, and national education levels.

    I’m sorry, but the school’s ratings for the article above:
    http://www.greatschools.org/search/search.page?state=FL&q=edgewater+&type=school
    of a 5, that it is not a good school district. Their national coverage of how the parents chose to address this problem, as well as the local media, reinforces that this is not the greatest school district.

    Isn’t it amazing how acceptance regarding how children are different, it improves a school? That doesn’t take money. It takes parenting. It takes a school district able and willing to follow federal guidelines.

    We could go further, and say what takes money from the school’s budget are those folks opting to walk away from mortgages, therefore lowering the amount of tax dollars funneling into the schools. Or how school violence causes schools to funnel money for security, for both the students and the staff. I’m sure you heard the two related news articles today, the Ohio high school shooting as well as the California fifth graders attempting to poison their teacher.

    But I won’t go further. But I’m pretty sure schools following federal guidelines (as some schools acquire funding for following these guidelines) aren’t losing money due to food allergy kid.

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  19. I am not a parent, I did not grow up with allergies, my parents did not shelter me, and yet I developed food allergies as an adult.

    M- Your comments I believe are out of confusion and lack of information. Do you have children? Again, I’m not a parent but I can bet you would do anything you could to protect your child. I am careful about eating at restaurants and making sure that my allergies do not change anyone else’s dinner choice but that’s because I’m an adult and can take care of myself. I understand that you feel some people are over-reacting, but by saying that you make me feel like a bad person for not letting my fiance kiss me after eating peanuts, or having a special meal planned for our wedding. We have always taught children that teachers and certain adults are good and to be trusted, but what happens when that teacher doesn’t advocate for that child to protect him/her from potential death.

    I do not blame you for not understanding, I did not before I had allergies. My everyday activities are now altered to keep myself safe. I invite you to shadow a parent of a food allergic child for a few days, go grocery shopping, make meals, and try to eat at a restaurant. See if that clarifies our concerns a bit. I have a blog that details my journey a bit.

    I am a proud “honorary” member of the #foodallergymomarmy. They have helped me deal with my diagnosis and find ways to make my life normal again. Please don’t hate them for caring for their families.

    Thank you

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