Education Isn't a Special Right

One of the biggest worries for parents of food allergic children is preventing a potentially life threatening reaction at school. Sometimes the steps a school takes to create a safe environment for our kids lead to controversy, especially peanut bans.

Recently a blogger wrote an inflammatory post titled "12 Reasons Why Peanut Free Schools Are Not Okay." (I'm not going to link to anyone who argues that accommodating the "special needs" of another child "sends a terrible message to normal and healthy children." Google it if you must.) It was widely shared on Facebook and the comments responding to it resembled a pro wrestling match refereed by Jerry Springer.

This type of outrage bait pops up pretty regularly, and the writers always use the same tired set of food allergy tropes. In the hope of spreading more light and less heat, here is my own list in response. Please feel free to use it the next time you're fighting the urge to chuck a virtual chair at someone's head.

School Policy Gone Wrong: Surviving Food Allergies in Florida

The sign outside my son's classroom.

I used to brag about how well my son's school in Pinellas County managed his food allergies. We had a full time nurse, caring staff and effective procedures to both minimize contact with allergens and to treat him quickly if he did have a reaction. Last month it all changed.

Last Day of School Lunchbox

I can't believe The Kid is already done with 3rd Grade!  I was a little concerned to find out that on the last day of school, all the classes will be eating lunch in their rooms.  I decided not to make a fuss about it, since school will be getting out almost immediately afterward, though I did have him wear one of his FAAN Walk for Food Allergies t-shirts today as a not-so-subtle reminder to his teachers.  (I always dress him in one on high risk occasions, such as when we travel by air.)

Today's lunch has turkey octodogs, apple bunnies, matchstick carrots, pretzels, grapes and apple juice on the side.  (You can find a nice tutorial for making apple rabbits at Lunch in a Box.)  The whole thing's packed up in an Easy Lunchbox.

Also, I've finally gotten up and running on Pinterest, so if you're a pinner, please leave me a note in the comments so I can find you.  Have a safe and fun summer vacation!

Update: I've turned off comments for this post, as it has become a magnet for spammers.

"My (Food Allergy) Plate"

Here is a photo of The Kid's just completed school project, a food collage based on the new USDA guidelines for a healthy diet.  We modified it to show only foods he can actually eat.  If you squint a bit, you can see we have a "dairy substitutes" food group, as well as only safe proteins.

I'm not sure why this project makes me giggle, but I really do love my son for showing some food allergy pride.

Support the Emergency Access to Epinephrine in Schools Act

Please sign this petition on Change.org in support of the Emergency Access to Epinephrine in Schools Act.

In honor of Sabrina Shannon, Megan Ayotte Lefort, Katelyn Carlson, and Ammaria Johnson who died of their allergies, children in schools should be given access to life saving epi-pen injectors in the event of an allergy whether there is an action plan in place or not.
Children with food allergies are at risk for anaphylaxis, a serious life threatening reaction that can rapidly close the airways of a child, causing death.  Nearly 6 million American children have potentially life threatening allergies.  Many families do not know that their child has a life threatening allergy until the first reaction, which can be deadly if not treated quickly.
This is why it is important to be certain that life saving Epi-pens can be made available at school to all children in the case of an allergic reaction.  The lives of the above listed children, and many other children, might have been saved if an Epi-pen was available to them.

I couldn't have said it better.

No More Dead Children

Photo of victim from NBC 12.

Last year was a tough one for the food allergy community.  A fifteen year old died in Georgia. Within a week a twenty year old also died in the Atlanta area.  A six year old died in Montreal.

Instead of a better educated and more compassionate public, one girl faced parents at an elementary school, who actually made picket signs and protested her food allergy accommodations.  An airline refused to keep another boy safe by refraining from spreading airborne tree nut allergens.

I had cautious hopes that this year would be better.  Then I saw the news yesterday about seven year old Amarria Johnson who died Monday from an allergic reaction on her first day back at school in Chesterfield, Virginia.

This unnecessary death is so horrific, I can't begin to describe it.  Here's the story from WTVR of exactly how an allergic reaction should NOT be managed.

CHESTERFIELD COUNTY, VA (WTVR) - Ammaria Johnson, a seven-year-old elementary school student in Chesterfield County, Virginia, died after suffering an allergic reaction at school.
According to Chesterfield police, the initial investigation revealed that the Hopkins Elementary School student, a first grader, died after she suffered an allergic reaction.
Johnson's family said it was a reaction to a peanut product.
Emergency crews were called to Hopkins Elementary Monday afternoon around 2:30 p.m.  When the EMS crew arrived, the child was in cardiac arrest, according to a Chesterfield Fire Department spokesman.
The child was pronounced dead a short time later at CJW Medical Center.
The child's mother, Laura Pendleton was distraught and she has many questions.
"She has an allergy plan at the school," said Pendleton, which authorizes the school to give her Benadryl during a reaction.  "They didn't do that," she said.
At the beginning of the school year, the mother said she tried to give the clinical aid an Epipen for emergencies, but she was declined and told to keep it at home.
Pendleton also wants to know how her daughter got access to the peanut.
She is also upset on how she says the school handled the situation.  "At 2:30 they called my wife and said somebody needed to pick Ammaria up because her tongue was swelling.  My wife told them to call 911."

Failure to give Benadryl, no Epi-pen on hand and the outrageous decision to call a parent instead of 911 when a child's airway is closing?  I don't even have words for this school's heinous behavior.  What part of "life threatening medical condition" did they not understand?  These people shouldn't be entrusted with the care of a gerbil, let alone a child's life.

And what kind of self-serving, we're-not-responsible-for-the-death-of-the-child-in-our-care, preparing-for-a-lawsuit garbage was the school district trying to serve up with its statement that this girl died of a "pre-existing medical condition"?  Here's the county's own guidelines for managing food allergies which the school failed to follow.  (Thanks to @IknowTiffany for the link.)

If I were a parent in that school district, nothing would outrage me more than the knowledge that the school was aware of the "pre-existing medical condition", had an action plan in place and still did not keep her safe.

Let me tell you what I want from 2012:  NO MORE DEAD CHILDREN.

Food allergy deaths are preventable.  The steps are simple, but require compassion and common sense which, clearly, are in short supply:

• Label all food, beauty and medical products accurately and completely.
• Ban airlines from serving peanuts and tree nuts, so that food allergic travelers are not denied safe access to public transportation because of their invisible disability.
• Train restaurant staff to safely prepare meals and avoid cross-contamination for food allergic customers.
• Have a licensed nurse on site in every school.
• Create an appropriate food allergy plan for school children, and follow it to the letter.
• Keep food in the cafeteria and out of the classroom.
• Pass the School Access to Emergency Epinephrine Act.  Do it now before more children die.

I'm fresh out of tact and diplomacy.  I really don't give a damn about your child's "right to eat peanut butter" or some corporation's "proprietary information".  I just want to keep my son alive.

Please, that's all I want from 2012.  Don't kill my child.

My deepest, most heartfelt condolences go out to Amarria's family.  You are living my worst nightmare, and my heart bleeds for you.

Post updated to correct the spelling of Amarria's name which was misspelled Ammaria in the original news reports.

Lunch and Love

In theory, this is still a food blog, so here's a sweet little lunch to tide you over:  a sliced turkey and Tofutti "cream cheese" wrap, pretzels, fruit salad of grapes, mandarin oranges and strawberries (with elephant food pick), and a heart cookie with apple juice and Happy Feet stickers on the side.  Doesn't everyone need dancing penguins to share at lunch time?

Today I'm still reeling from a call from the school nurse.  My son drank from a water fountain in the music room, though he knows he's not supposed to.  ("But I was thirsty!")  He had a contact reaction with hives on his hands, and even more worryingly, on his throat.  Nothing terrifies me like a threat to my child's airway.  The school handled it well, as always:  a staff member spotted it right away, the nurse determined what happened, washed him off, called me up and gave him Benadryl.  My husband then picked him up from school, since a dose of the pink liquid leaves him too sleepy and accident prone to return to class.

Sometimes I just hate this.

The really scary part is that I am one of the lucky ones.  My son's school is supportive, caring, professional and has a full time nurse on staff.  The other parents are considerate and concerned for my son's safety.  His teacher is wonderful beyond words.

I don't know how parents manage to stay sane when the school and community don't believe that part of being a good parent and good person is looking out for other people's children.  Yesterday I finally met a family in that situation, Tracey and Dave Bailey whose incredibly sweet six year old daughter has been the target of a brutal smear campaign, which has misrepresented her food allergy accommodations and attempted to drive her out of a public school.

The school in Edgewater, Florida, which has been picketed by parents, held an "Allergy Awareness Meeting" yesterday which some of the members of our support group attended in order to show support for the Bailey family.  It was a remarkably quiet event, but I do have a post brewing about it, as promised.

In the meantime, here is a photo of an amazing peanut detection dog, who I was also privileged to meet yesterday.  This is an animal who could serve as an example of the unconditional love and tireless dedication needed to keep a child safe.  Maybe the protesters in Edgewater could learn a little something from her.

Peanut Protest Update

Yes, that's two signs, but it does seem to capture the spirit of the protests!

Here's a quick update for those of you following the news out of Edgewater, Florida, where parents have been protesting the "extreme measures" (i.e. hand washing) being taken to protect a six year old girl with a severe peanut allergy.  Tonight there will be an "Allergy Awareness Meeting" at the elementary school, which I will be attending with others from the Tampa Bay Food Allergy Support Group.

First there's bad news via Tracey Bailey on the Facebook page started to support her and her family during this difficult time.  The school has caved to some of the protesters' demands and are no longer requiring children who have been in other classrooms which are not peanut free to wash their hands upon returning to her daughter's classroom.  This is very disturbing for those of us who rely upon a public school to adhere to our children's 504 and Individual Health Plans to keep them safe.

The good news is that the school is trying to do some public education and is addressing the issue.  The latest I've heard by way of our support group is that there will be a speaker from the local health department, but that neither FAAN nor FAI has been invited.  I do not know if there will be a representative from either organization there anyway.  Hopefully everyone will have the shouting worked out their systems, or at least be hoarse enough to give reasonableness a chance to be heard!

I truly hope that some of these parents who have seen this as a zero sum game, where the needs of another child being met take away from the education of their own, will discover that the effort needed to protect one little girl is minimal, and that their own child benefits tremendously from learning to treat others with compassion and respect.

If you'd like to show your support for the Bailey family and keep up with the news out of Edgewater, you can join the Facebook page, which is now creeping up on 1000 members.  I will also post about the meeting itself in the next few days.  Keep your fingers crossed!

My Kid Is Special Too*

The front door of my son's school.

In the wake of the parents protesting the food allergy accommodations of a first grader in Edgewater, Florida, I promised a glimpse at my son's Individual Health Plan, which is remarkably similar to the descriptions of the much maligned one belonging Tracey Bailey's daughter.  Unfortunately, my son's I.H.P. is not in the specially designated blue expanding (and expanding and expanding) file that is home to the blizzard of documents my child seems to precipitate every time he comes into contact with our educational system.  So I'm going to describe the most relevant provisions from memory with a few comparisons between the two.

First a big disclaimer and then a little background:  my memory is far from perfect.  My apologies if I manage to misrepresent my son's accommodations, simply because I gapped out a relevant section.  In addition, I have not personally seen Tracey's daughter's health plan.  I am going strictly on Tracey's descriptions and the information given by school officials to reporters.  Plus, our children's schools are in widely separated counties with different policies.

My son's elementary school is both the one closest to our home and the only one at our end of the county with both a full time nurse and a stellar reputation for managing food allergies and other chronic health conditions.  It's something of an unofficial magnet for kids with peanut allergies and diabetes.  So, of course, the school district wanted to assign The Kid elsewhere when he started Kindergarten.  After endless attempts by phone and online to get him reassigned, I spent the better part of a day with mountains of documentation working my way up the food chain at the county administration building to get him enrolled at his current school shortly before the school year began.  (That's a story for another day, but it's amazing what can be accomplished with reasonable requests, supporting evidence and polite persistence.)

Based on the medical information we provided, the school nurse quickly banged out a health plan with relatively little input from us:

• Every person, whether student, staff or parent, entering my son's classroom must wash their hands at a sink just inside the door.
• Every student must rinse their mouth when entering the classroom first thing in the morning and immediately after lunch.

I'll be honest; I was truly startled when I saw that the nurse had included the mouth rinsing provision in the I.H.P.  It seemed a little extreme, and was not something that it would have ever occurred to me to request.  This is also the procedure that has sparked the most controversy in Tracey's daughter's accommodations.

Then I saw the mouth rinsing in action.  There is a little water fountain on the side of the sink, and the kids are instructed to "swish and swallow" after they wash their hands.  That's IT.  All they are doing is taking a sip of water from a fountain.  Quite frankly, it's a good idea to encourage kids to drink more water in general here in the Florida heat.  I am at a loss to even understand the controversy about the hand washing, since it's just good hygiene and a basic safety measure.

As far as the time that washing hands and taking a sip of water requires, the protesters have manufactured the statistic that they are required to do this three times a day and it takes ten minutes each time, causing a total loss of thirty minutes from academics each day.

This is pure fiction.  First, it is twice a day, after arriving from breakfast at home and after eating lunch at school, both for Tracey's daughter's and my son's classrooms.  Second, washing up in the morning does not take away class time, since it is done upon arrival before class even starts.

As an update to Tracey's situation, it turns out that mouth rinsing was never actually in her daughter's health plan, and the school had been doing it unnecessarily.  They have since switched to washing the kids' faces, but have never, ever used Clorox wipes on their hands or faces as the protesters have claimed.  [Update:  this change was made before the protests started.]

Originally both plans dealt with lunch in a similar way:

• At Edgewater Elementary, the students leave packed lunches on a cart outside the classroom, which is taken to the cafeteria.
• At my son's school, lunches are left on a shelf just inside the door and are picked up again on the way to lunch.  (This is standard, not an accommodation.)
• Neither school bans any food, including peanuts or peanut butter.
• Both plans initially called for the child to eat separately from the other students.

This is where we asked for less restrictions than the nurse's plan prescribed.  My son was very upset at being isolated from the other students at lunchtime.  He felt it was a punishment for his food allergies.  So we requested that he eat in the cafeteria in a designated place, which is wiped clean before he sits down.  Children who are eating peanut butter, because of the violence of that particular allergy, or drinking milk, because of the spill potential, just don't sit next to him.  (That's right, 7 and 8 year old children do their part to keep my son safe with awareness and compassion.)  He had an aide assigned to him during lunchtime, but everything has gone so well, that he now eats without the aide.

I am very, very aware of the risks involved in having my son eat lunch with the other students in the cafeteria.  Another child at my son's school with severe food allergies eats in a classroom with a friend of his.  My thoughts are that I would rather have him gradually start learning to function independently in an unsafe world, while supervised by adults who genuinely care for his well being and have appropriate medical training to handle any accidents, but I still worry.

Another of the protesters' complaints is about the lack of sugary treats at class parties.  Here is my son's school's policy related to class parties, unrelated to my son's food allergies:

• There are only 3 classroom parties per year at which food is served.  The teachers may select which holidays they wish to celebrate.  (Typically it's Halloween, Christmas/Winter Break and Valentine's Day.)
• No homemade food may be given to the students.  It must all be store bought and clearly labeled with ingredients.

In Kindergarten, the teacher let me know what the kids would be eating in advance, and I'd provide something similar for my son.  So there was unsafe food in the classroom from time to time.  (This also led to some unexpected creations, such as my Be My Valentine Cakes.)

For the last two years, though, the teacher has been simply amazing and allowed me to provide all of the treats for school parties.  (She moved up from first to second grade with the class.)  In addition, she even came up with a workaround, which allows me to bake safe treats for parties.  The school has a full kitchen in the Kindergarten wing, so the day before a class party, I go in with unopened packages of ingredients, such as flour, sugar, etc., and bake on the premises.

In contrast, the first grade teachers at Edgewater Elementary made the following decisions about food in the classroom without regard to food allergies:

• They eliminated snacks due to the early lunch time at 10:45am, as did the fourth grade teachers for the same reason.
• They decided to do crafts instead of eat treats at holiday parties as part of the school's focus on healthy living.

Here's the real difference:  the other parents in my son's class have been nothing but supportive.  They have repeatedly expressed their concern for my son's safety and their appreciation for the goodies I provide.  At Edgewater Elementary the parents have blamed a six year old girl for school policies unrelated to her disability.  They also protested outside her elementary school with inaccurate information about her accommodations without either verifying her actual health plan or approaching either the school administration or the child's parents appropriately.

I truly believe that while plans to protect children with food allergies are critical, the people who implement them are even more important.  Education about food allergies is meaningless without a willingness to be educated and the compassion required to keep a small child safe by something as simple as hand washing.

Update:  A Facebook group has been started to support the Bailey family, if you'd like to join us.

*In case you were wondering, the title is in reference to this picket sign:

A Little More Education

So very many of you have asked if there is absolutely anything that can be done to help the family being harassed and bullied about the food allergy accommodations their daughter receives at her elementary school here in Florida.  I finally do have contact information for the school and district, as well as state level agencies, where you can let your opinions be heard, as well as a request from Tracey, the mom.

First, the bad news:  other parents have written so many disturbing comments online in response to local news articles, such as threats to put peanut oil on their own child's backpack, that the family has decided it is no longer safe to send their daughter to school.  These protesters have successfully managed to bully a six year old out of school, because of her disability.

Before I set all of you loose, though, I want to give you a word of warning.  I can tell you that personally, my blood is boiling.  The temptation to just breathe fire through the phone line is awfully hard to resist.

Then I remember how the story has played out in the media.  Exaggerations and outright lies have been presented as fact in a "controversy" about "extreme measures" that are "depriving other children of their right to an education."

As hateful as these parents are, they have presented themselves with enough media savvy to make it a story about wanting "compromise" about the accommodations, rather than about a pack of bullies endangering a child's life.

The narrative needs to be fixed.

If you are willing to take the time to send an email or pick up the phone to make a call, remember that the recipient is most likely an innocent school or state employee who has suddenly found him or herself in the middle of a hailstorm.  Remember, you are contacting them as a Deeply Concerned Parent, not a Raving Freaking Lunatic.

Just because you know that you are the good guy, doesn't mean that anyone else does.  So make sure that your words and tone demonstrate that.

These are a few suggestions:

• Explain your concern for this child's safety and well being.
• Respectfully ask that, although you understand privacy restrictions, that the school speak up to the media to accurately describe the accommodations this child has received.
• Ask what anti-bullying measures are in place, and how they intend to protect children from this kind of hatred.

Spring break started yesterday in Volusia County, adding even more to the hit and run nature of this bullying campaign, but here is the contact information:

• Edgewater Elementary School Principal Linda Moore: 386-426-7300.
• Volusia County School Superintendent:  386-734-7190.  (Follow prompts for operator and ask for Superintendents Office.)
• The Florida Department of Education:  850-245-0438.
• James Holland, Director of Professional Standards:  386-734-7190 ext. 20256.  (This one is to report school misconduct, so make sure you have a Specific Complaint, not a Wild Accusation.)

In the comments of the previous post, Kyra was kind enough to also share the district's email contact information:

• Principal Lynda Moore: lmoore@volusia.k12.fl.us 
• Assistant Principal Stephanie Eafford: saeffor@volusia.k12.fl.us 

Finally, here is the request from Tracey.  It appears that in some of the comments by parents in the news stories online, there have been details of her daughter's medical plan, however distorted, that could have only been revealed by a member of the school's staff.  If you are brave enough to go on troll patrol, see if you can find any of these comments.  If you find them, please copy and paste the comment or take a screen shot if you can (in case it is deleted) and email it and the link to the page to me at allergiesmom[at]gmail[dot]com.  I'll sift through the duplicates and make sure that they reach Tracey.

Thank you so much for your compassion and zeal in defense of her daughter.


Update:  Many thanks to the commenter who let me know that the email addresses to the school's principal and assistant principal are no longer able to receive email (stuffed full to bursting with your eloquent correspondence, I'm sure) and provided the following contacts:


Volusia County Schools
Superintendent Dr. Margaret S Smith
200 North Clara Av
P.O. Box 2118
Deland, FL 32720-2118
Email - masmith1@volusia.k12.fl.us

Florida Department of Education
Office of the Commissioner
Dr. Eric J Smith
Turlington Building, Suite 1514
Tallahasse, Florida 32399
Email - Commissioner@fldoe.org


2nd Update:  A local newspaper has taken the time to research the story, speak to the family and school officials, and accurately describe the allergy precautions that are in place in the classroom.  Thank you to the Daytona Beach News Journal for practicing journalism instead of sensationalism!


[Post also updated to clarify that threats were made to rub peanut oil on another child's backpack, as opposed to it actually happening.  It was *just* a death threat against a six year old child.]


Yet another update:  A Facebook group has been started to support the Bailey family if you'd like to join.    

Today's Lesson: Hate and Intolerance

Last night I received my daily update from my online food allergy support group based here in Tampa Bay.  Normally what goes on the bulletin board stays on the bulletin board and I don't post it here on the blog, but Tracey, the mom, has given permission to share her story.  I am just sick to my stomach at what this family is enduring.

A first grade girl in Edgewater, Florida, has a life threatening peanut allergy.  The school is making appropriate accommodations based on her physician's recommendations and the Section 504 requirements of the Americans with Disabilities Act.  The kids wash their hands and rinse their mouths upon entering the classroom in the morning and after lunch.  Food is not permitted in the classroom.  Mom supplied allergen free treats for a Valentine's Day party for the entire first grade, though, so that everyone could celebrate.

So far, this is almost identical to my son's classroom.  What happened next couldn't be more different.

A group of parents decided that their children's rights were being infringed upon and picketed outside the school yesterday and today against the food allergy accommodations being made for a first grade girl.

I'm just going to stop here for a minute so you can go read that last sentence again.  When you're done yelling at your computer, come on back.

If you've calmed down, I'm sorry, because this story only gets worse.  This group of parents is out spreading wildly inaccurate rumors (what I like to call lies) about the actual accommodations.  They claim that Clorox Wipes are being used to clean the children themselves, not the counters.  (Wrong.)  They say only the girl is allowed to bring outside treats.  (Those would be the treats her mom purchased for the party for their children.)  They are upset a peanut sniffing dog was in the school with their children.  (The dog was scheduled for next week, but not during school hours.)  They claim that other kids are forced out of the nurse's office so she can make phone calls home.  (I don't even understand that one.)

These parents aren't just intolerant and uninformed, they are wildly inconsistent, but then no one ever said that hate was rational.  In the video below, one of these mothers manages to complain that her child is being deprived of valuable educational time for hand washing AND that her child cannot have the classroom parties he or she deserves.  Which one is it?  Not enough academics or not enough party time?  And are you really opposed to hand washing?  (Don't even get me started about the picket sign that said "happy median" instead of "happy medium".)

Video by WKMG Orlando Local 6

Then the media began reporting on what they are calling a "controversy".  In the Channel 13 video, at least the reporters took the time to speak to the family and share their side.  The online story, though, has a dreadful, alliterative headline about "peanut panic" and ran a poll in the sidebar to their story that could have been written by one of the protesters, asking "Should one student's medical condition impact the entire student body?"  They received enough complaints that they eventually changed it to "Do you agree with the school district’s response to the student’s peanut allergy?" but kept the results from the previous, biased question.

The Orlando Sentinel mom blogger Koshii Eslinger must have thought she was taking a balanced view by calling both sides "extreme" in her Mom at Work post.  She suggests that Tracey take her inconvenient little girl elsewhere, either private school or home school, but it's because she's such a good parent that she would do anything to keep her daughter safe.  To their credit, the protesters aren't actually trying to run a child out of school, they just want to endanger her life while she's there.

The one sliver of good news in the middle of all this hatred is that Tracey's daughter happened to be home sick for yesterday's protests.  Her parents decided to keep her home today, as well, upon learning about today's planned picket.  So she missed school to protect her from these parents' outrageous, bullying behavior.  Fortunately she also missed an opportunity to watch the news coverage with her classmates when the teacher decided to show it on television today.

I'll wait here for you to finish yelling again after that last sentence.

I've been hesitant to speculate upon the role of the school's staff in stirring up the protest, but I'm starting to suspect that there might be a lack of compassion and judgement among some members of the faculty. 

The most ironic part of this wildly misreported narrative is that it all occurred on the same day as the White House began a conference on bullying prevention.  I've discussed the painful prevalence of food allergy bullying before, but part of the difficulty in this story is that it is being treated as a disagreement, rather than a naked attempt to bully a child with a disability.  If these protesters were opposed to the inconvenience of having their children walk around a wheelchair ramp or upset that a disabled child has a "special" bathroom stall with handrails, they would, quite frankly, have been immediately recognized as a bunch of loudmouthed jerks trying to push a school district and an innocent family around. 

Instead we are being given a vivid demonstration of how to teach a child to become a bully.


Update:  Here's the flyer the protesters were handing out.

2nd Update:  To clarify, these descriptions of the allergy accommodations by the protesters are NOT ACCURATE.  They are mischaracterizations, exaggerations and flat out lies, twisting the facts into a parody much like this sign.

Update the third:  I finally have a post up accurately describing the food allergy accommodations at two different Florida schools for Tracey's daughter and my son.  Also a Facebook group has been started to support the Bailey family, if you'd like to join.

Bullies, Food Allergies and The Force

What happens when the light saber Epi-Pen is out of reach?

By now if you have an internet connection, you've probably heard the story of Katie and her Star Wars thermos.  Right after the recent rash of teen suicides caused by brutal bullying of LGBT youth, Katie's mom discovered her 1st grade daughter was being teased daily at lunch time because her choice of lunch gear wasn't pink enough.  Fortunately her mom recognized the problem for what it was and didn't let it slide.

Then the girl geeks of the internet found out about Katie.  The cavalry, as they say, had arrived.

Those of us with children with food allergies are already painfully aware that lunch table bullying can be devastating.  Sabrina Shannon, the Canadian eighth grader who died of anaphylaxis because she didn't have her Epi-Pen with her, had stopped carrying the bag containing it after being teased about it at school.

A few months ago the first study about bullying of food allergic kids came out.  It found that a whopping "35 percent of children with food allergies, who are over the age of five, were reported to have experienced bullying, teasing, or harassment as a result of their allergies.  Of those experiencing teasing or harassment, 86 percent were reported to have experienced repeated episodes."  The bullying was both verbal and physical, with 43% of the children reporting that they had had food they were allergic to waved in their faces.  The worst part?  "[M]ore than 20 percent reported harassment or teasing from teachers and other school staff."

That's right, school employees charged with protecting our incredibly vulnerable children are some of the bullies who belittle and diminish them.  I used to find it difficult to believe that an education or medical professional would deliberately use words that would damage or endanger a child.  Not anymore.  (I'm looking at you, Dr. Bahna.)

Even if nothing happens today, that kind of emotional damage festers.  The teenage years, when peer pressure and rebelliousness reach their zenith, are the most dangerous for food allergic kids.  For parents, that means our job isn't just to keep our children safe now, but to teach them to keep themselves safe later AND do it in such a way that our kids don't rebel against the constant emphasis on safety.

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.

With Friends Like These...

Now that I've had a chance to catch up and calm down, I feel that I need to revisit the outrageous remarks made at the American College of Allergy, Asthma and Immunology's annual conference by the organization's president  Dr. Sami Bahna.

The food allergy community is infuriated by what we see as a betrayal by the head of an organization of medical professionals dedicated to treating us and our extraordinarily vulnerable children.  As I've reread his high handed pronouncements about the futility of peanut bans in airplanes and schools and the rights of "non-allergic persons" to consume food whenever and wherever they wish, I've come to a few conclusions.

The first is that Dr. Bahna undoubtedly believes that he is taking a fair, balanced and reasonable approach to the subject of accommodations for food allergic individuals.

The second is that Dr. Bahna is completely out of touch with the reality that his food allergic patients face on a daily basis.

His remarks have triggered a discussion within the community as to whether peanut bans make sense in airplanes, but not schools, whether age of student/type of food/severity of allergy should be considered in making these determinations.  I've jumped in myself.

This is all a distraction from the real issue.

Anyone can stand up and make declarations about the best way to manage life threatening food allergies.  I consider it a minor miracle that I can sit down at my computer, post something on my blog and a couple hundred people will actually take time out of their day to read it.  A few will even leave a comment or email me, and I am incredibly grateful for every response that lets me know I'm not alone in dealing with this terrifying reality that just one bite of perfectly normal food could deprive me of my child forever.

The truth is that I am just another voice on the internet, one more opinion in a sea of opinions.  I am not a doctor.  I am not a specialist in allergies.  I most certainly am not the head of an association of medical professionals.

Dr. Bahna is all that and more.  He has gratuitously made himself into an obstacle for any parent trying to convince an uncooperative school administrator to create a safe space for their allergic child to receive the education he or she is legally entitled to have.  Just try asking for a food free classroom now.  "Well, the president of the ACAAI says that peanut bans don't work."  It won't matter if the parent's request is completely reasonable and has nothing to do with banning peanuts school wide.  I can guarantee that the consequences will be completely out of proportion to the intent of Dr. Bahna's ill-advised remarks.

Dr. Bahna is also a gift to any airline executive with an emotional or financial investment in passing out little bags of peanuts to passengers.  Never mind that they are completely unnecessary to the transport of passengers from Point A to Point B and have the potential to kill off some of them en route.  "The president of the ACAAI says that peanut bans don't work."

To all appearances Dr. Bahna is completely oblivious to the real world implications of his pronouncement on peanut bans from his lofty post as president of the ACAAI.  This lack of judgement makes him completely unsuitable for the position.

I will be emailing the ACAAI at mail@acaai.org to let the association know just how inappropriate I find Dr. Bahna's remarks.  I will also make a point of asking my son's allergist whether he is aware of what Dr. Bahna has said, so that at least one of the organization's voting members know what an embarrassment they have as their president.

Feel free to join me.

Free Ebook: Smart School Time Recipes

I'm pretty sure that Alisa Fleming of Go Dairy Free and One Frugal Foodie doesn't sleep.  Just two weeks ago she was appalled by a newspaper circular advertising unhealthy foods designed for kids.  So Alisa put out a call for submissions for a "blogger mission."  She wanted to create a free ebook of healthy, allergy and special diet aware,  kid friendly recipes for back to school season.

It's no small measure of the respect and gratitude for Alisa and her work that over 70 of us immediately responded, including such well known writers as Hannah of Bittersweet, Jennifer of Vegan Lunch Box, Ricki of Diet, Dessert and Dogs, and  Susan of Fat Free Vegan.  (To say I'm thrilled to be included is a ridiculous understatement.)  The result of all that blogger enthusiasm and Alisa's hard work is Smart School Time Recipes:  The Breakfast, Snack, and Lunchbox Cookbook for Healthy Kids and Adults.

The free ebook contains 125 recipes, including those with and without meat, gluten, eggs, dairy and other allergens.  Alisa also has added her suggestions for substitutions to many of the recipes that include common allergens.  It really does have something for everyone!

You can download the ebook here!

Here We Go Again

Yesterday was picture day at The Kid's school. So in the morning I coerced him into a Hawaiian shirt (Mommy's twisted photographic tradition), wet down his hair, attacked it with a brush, then put a little of my Molding Souffle on for good measure. I should have known better.

Shortly after recess, I got The Call from the school nurse. As the kids were coming in from outside, the teacher noticed that my child's face had broken out in welt like hives. She sent him to the nurse, who dosed him up with Benadryl, then gave me a call. I haven't done a break down of the ingredients yet this time, but I'm pretty sure that The Kid started sweating out on the playground, which gave the mousse a chance to start a contact reaction on his skin.

I've been kicking myself pretty hard for screwing this up, but I'm trying to use the incident as an opportunity to fine tune both the school's food allergy plan and The Kid's understanding of his food allergies.

The good news:

• The teacher noticed the hives immediately and took action.
• The day I spent camped out at the county school board offices until my child was transferred to the only nearby elementary with a full time nurse just paid off in spades.

The not so good news:

• The teacher sent The Kid to the nurse's office accompanied by another student. If the reaction had worsened or his breathing had been impaired on the way there, there was not an adult present.
• The Kid felt the hives, but continued playing rather than alerting an adult. I've realized that almost all the talking and planning I've done with him has been geared toward preventing a reaction, rather than how he should handle it. This is becoming more his responsibility as he gets older.

Deep breaths and constructive thoughts. That's my mantra right now. Just deal with one thing at a time, and maybe, just maybe, I'll run out of things to deal with for a few minutes. Food allergies never take a day off, and I just have that sinking feeling, here we go again...

Update: I just spoke to the school nurse, and she was standing outside the office watching The Kid walk from his classroom to see her. What he told me was correct, but incomplete. That's a relief, and my faith in the school nurse has been justified again.

First Day of First Grade Lunchbox

The Kid and his EpiPens are both at their first day of school. The school nurse and the staff are really very experienced at managing food allergies, but I've still got a twinge leaving him on the first day. We've been chatting with the nurse and The Kid's new teacher about making sure he doesn't get isolated at his designated end of the lunch table, since he doesn't have his friend with milk allergies to sit with him this year. I'm trying to get a "no splash zone" where the kids immediately adjacent and across from him don't have milk or peanut butter with them. The Kid is very good about staying away from other people's food, so I'm mostly concerned with the potential for accidents, as well as the evil substance's sticky properties.

Today's lunch is a little fancier than usual, since the bed of lettuce is strictly decorative. It's cradling two octodogs made from a turkey dog and some leftover ginger candied carrots with a food pick. Alongside are pretzels, seedless black grapes, a small package of gummy dinos, and an allosaurus sticker. I've switched to an 8 ounce reusable juice box for his apple juice/water mixture, since the larger bottle usually came back half full and this one packs better.

Sending a lunch to school means it's time again to head over again to Coffee & Vanilla for Margot's lovely Wholesome Lunchbox event. Don't miss all the adorable bentos and creative lunches she has on display on the 15th of each month!

Gratitude

From a letter I wrote to the school principal:

....I am writing to thank you for the excellent job the school staff has done this year to keep [my son] from having an anaphylactic reaction due to his severe food allergies.

The school nurse, xxxx xxxxxx, wrote a truly comprehensive Individual Health Plan and ensured that all of xxxxx‘s teachers, including substitutes, were familiar with the plan and trained to use his EpiPen. His Kindergarten teacher, xxxxx xxxxxx really rose to the challenge of creating a safe environment for xxxxx. She also deserves a great deal of credit for fostering an inclusive atmosphere without any stigma attached to his food allergies.

I am extremely grateful for the caring and professionalism xxxxx has encountered at xxxxx xxxxx. We are looking forward to another great year!

I sent copies to the nurse, teacher, and county school board health supervisor. We are fortunate that The Kid is attending a school which is really a model for how food allergies should be managed. Before I even had a chance to contact her at the beginning of the year, the nurse wrote an IHP, which includes having the kids in my son's class rinse their mouths after lunch and wash their hands upon entering his classroom. I had to request that he not eat in a separate room, so he wouldn't be isolated at lunch time!

So many parents have to struggle to get basic safeguards for their food allergic kids. My son's school really deserves a little positive reinforcement for getting it right.

100th Day of School

Today is the 100th day of Kindergarten, which is a Very Big Deal. I had been warned about it, because it frequently involves counting a hundred small items, such as candies like M&M's, and consuming them in class. The teacher let me know in advance that each child in his class would be given cookies (1 wafer stick and 2 butter cookie rings) that would form the number one hundred, so that I could provide a safe version. Sometimes when I make a substitute, I try for a perfect replica. Sometimes I just get out the purple sprinkles.

Today's post was brought to you by the letter "C."

Pumpkin Mini Pies

The Kid's Kindergarten class is having their Thanksgiving party today, where (almost) everyone will enjoy a slice of pumpkin pie with whipped cream on top. The teacher is good about letting me know well in advance about any food activities or events that I'll need to provide a substitution for, but it adds some additional stress to an already tight schedule. I decided to try to make something simple that would hopefully survive the trip to school in a five year old's backpack.

6 Mini Graham Cracker Pie Crusts (Keebler Ready Crust)
1 C cooked pureed pumpkin
1/2 C vanilla soy yogurt
2 Tbs brown sugar
2 Tbs corn starch
1/2 tsp ground cinnamon
turbinado sugar to sprinkle generously on top

Preheat oven to 350°F. Combine all ingredients except crusts and turbinado sugar in a medium bowl and mix until smooth. Fill pie crusts with mixture, dividing evenly between all six. Smooth the filling or give it a stir to create a spiral pattern. Place mini pies on a cookie sheet, and bake for 20 minutes. Remove from oven and sprinkle pies with turbinado sugar to completely cover top surfaces. Return to oven for another 10 minutes. Serve hot or cold.

This is my first submission to Sugar High Friday. The amazingly popular event's theme this month is "All That Glitters,"so I'm sending my sparkly little pies to Susan of The Well Seasoned Cook.

The Firehouse Rocks

Last week The Kid's class went to the local fire station for a tour, fire safety lesson and ride on an antique fire truck included. I was luckily able to go along as a chaperone, and took advantage of the opportunity to buttonhole a paramedic and question him about various medic alerts, which have been a hot topic of conversation around here lately.

After the tour, we were all eating lunch, and one of the girls in The Kid's class asked me about his bracelet. (Interesting that she asked me instead of him, but I went with it, since his mouth was full and it gave me an opening.) I explained that if he were ever sick and a firefighter came to help him (I shamelessly pointed to the startled paramedic standing next to us), it would tell him or her about The Kid's allergies.

The paramedic was a really good sport about it and leaned over to to look at The Kid's medic alert bracelet. He read the tag aloud, then patiently answered all my questions. Here's what he had to say:

• The paramedic stated that the medic alert needed to be obvious and clearly visible. Rescue crews keep an eye out for the medic alert logo, then look more closely once they see it.
• A bracelet is better than a necklace, since sometimes a tag will be hidden on the back of the neck or beneath clothing.
• The most important information to have on there is any drug allergies. (To me this was interesting, since it was the perspective of a first responder, who is primarily concerned with emergency care.)
• I asked his opinion of medic alerts that have a phone number providing access to an individual's medical information. The paramedic stated that a child my son's age is either with a caregiver who is able to provide that information, or is at school. He said that any time he has been called to a school, the health card listing any conditions, medications, etc., has already been fetched, and that card accompanies the child if he or she is transported.

After thanking the paramedic, I had a lot to mull over. One good idea I had is to write out all of the same information that is on the school clinic card, including his doctors' contact info, and put it in The Kid's EpiPen case, that way I don't have to worry about getting tongue tied in an emergency. We may revisit the idea of a tag with a phone number accessing his medical records once he is an independent teenager.

It was a fun trip, and The Kid and I were both well educated. So thank you to the firefighters at the East Lake station!