What I’ve learned is….there’s still more to learn. And more to do.

In 2004 I had my first food allergy policy conversation in John’s preschool classroom in Barrington, IL. I remember how scared and timid I was over simply asking for some preventative measures to keep my little preschooler safe in his classroom. I’m no longer afraid, scared, and timid to ask for things are common sense approaches to keeping these kids safe AND included in their classrooms. No, the only thing I am terrified of is John dying. So I’ll never stop talking. I’ll never stop fighting. And I’ll never ever apologize for doing what I must to keep John and kids like him safe AND included in their classrooms. THEY DESERVE IT.

Just a few short weeks ago, the food allergy community celebrated a HUGE victory for food allergy policy and advocacy in the state of California. Thanks to CAFA (California Food Allergy Advocates Senator Huff (and his office!) for their tireless work in getting the stock epinephrine bill SB 1266 signed into law by Gov. Brown:

CAFA is happy to share that SB1266, a bill that would provide schools with life-saving Epinephrine was signed by Governor Brown on September 15th, 2014.  The law goes into effect on January 1st. This law will protect students and teachers who suddenly develop severe allergies for the first time while at school.  Startlingly, 25% of the emergency first-aid Epinephrine used at school is used on people who have never been diagnosed with an allergy.  The students and teachers will be able to receive first-aid if they experience a life-threatening allergic reaction at school.” – CAFA Advocates”

It’s incredible to know that WE CAN make a difference. WE CAN change policy. WE MUST keep pressing on, however. Because the past couple of weeks I’ve experienced first hand how much more work needs to be done on behalf of food allergy policy, especially in schools. I MUST keep pressing on, push harder and educate more widely. Because yesterday, I sat for a moment and thought “if so much has changed, then why am I still having the same conversations about food allergy safety at school as I did 10 years ago?

Twice in the past week I’ve had conversations with my kids’ teachers about sensitivity toward food allergy policy in the classroom. During parent information night in one of my kid’s classrooms, a teacher was going over classroom policy and procedures; absences, make up work, tardy policy etc. Then it came down to the “Birthdays” line item. The teacher’s comment was “Birthdays. Yeah. Well, you can see I didn’t write much about that. Because now we can’t have food for birthdays anymore because of all the food allergies so there won’t be much celebration I guess. So, birthdays are not really celebrated.” My mouth was actually on the floor at this moment, and I was so dumbfounded that by the time I tried to respond, the moment passed. Everyone moved on to the next line item. And I sat there, stunned. Really? Was that just said OUT LOUD?

Fast forward a few days later. John came home to tell me about a teacher of his handing out candy as a reward in class, and offering a free pizza with friends at lunch coupon. Let me be clear, John was more bummed and felt left out in his classroom than anything, but even so he did NOT want me to single him out, make a big deal or embarrass him about it. I asked him “so what would you like me to do?” He simply said, “just please don’t embarrass me.  But I am bummed”. I had to meet with this teacher over a separate issue and sent an request for a meeting. The teacher responded and made a great suggestion – bring John with to the meeting so he can discuss his concerns too. Brilliant, I thought! He’s in 7th grade now, and should learn to self-advocate on his own behalf. So we both showed up before school one morning, and had a discussion about the one issue first, then the food allergy/treat concern next.

So many of us have had this conversation before – I’ve been having mine regarding John since 2004. Yet, 10 years later, I’m sitting next to my son, having the SAME conversation. Different teacher, different circumstance, but it’s the SAME conversation.

Me – “John has a medical 504 Plan that legally requires you, his school, to accommodate his life-threatening food allergies by using food free items as a reward in place of the food”.

Teacher  – “Oh I’m sorry, I thought it was OK when I said at his 504 meeting that I like to serve these little treats.”

Me – “No, it specifically says No Food in classroom. May I see the treat please?

Teacher hands the treat to me to review. It says Milk in ingredient list.

Me – John’s as allergic to dairy as he is to nuts. And he has severe asthma. This isn’t OK. And there is no food in the classroom. Can you explain the pizza party reward please?”

Teacher – “It’s a coupon for homework night off or pizza for child and two friends at lunch.”

Me- Is it possible to use a coupon for a non-food reward?

Teacher – Well I don’t want to exclude John and make him feel left out by taking away these rewards.

Me-But you are, just by merely offering them.

John – How about (gives a non food recommendation)?

Teacher – No that wouldn’t really work because of XYZ.

John – Oh. OK. 

Me – Per John’s 504 Plan, there is no food to be given or used as reward. That’s a contractual accommodation and technically I would need to file a complaint with the OCR to investigate the repeated 504 violations at school. I want to work together on this, minimize attention to John’s allergy at school and make sure from this point forward we have an understanding.

Teacher – Well I certainly respect your viewpoint and what you are saying.

A beat.

Meeting is concluded. John and I leave the classroom and I can see the frustration in John’s eyes. He saw the frustration in mine. Because, though the meeting was overall nice, positive and helpful, it doesn’t remove the underlying fact that, again, we are forced to have a conversation about policy regarding handing food allergies in the classroom. And despite the expectation that 504 plans are followed to the T, or that teachers understand it is a medical disability that could cause a child’s death on their watch, we are STILL having conversations about broken agreements, misunderstandings and feelings of being singled out. John experienced as a food allergy kid, in that moment, what it feels like to be a food allergy parent and advocate. I asked him how it felt and his answer was “FRUSTRATED.” My answer back – “ME TOO.”

Side bar – I’m blown away by an organization called Canary Kids Film Project. It is a not for profit group that is doing some truly ground-breaking work in getting answers about why our kids are chronically affected by allergies, asthma, autism and autoimmune diseases as well as a host of other ailments. Please take a moment to read what Canary Kids is all about, and find any way you can to support their efforts. I plan on helping in any way possible to see this documentary get made. And we start getting the answers we need to take care of our children’s health. If you are in So Cal please join me Saturday Oct 25th in Newport Beach at True Food Kitchen for a special fundraising event honoring the incredible Robyn O’Brien, author, advocate and founder of AllergyKids, and Bob Sears, MD author and pediatrician. Hope to see you there, and if you can’t please consider making a donation on behalf of your own child to this organization. Because this project is for all of US.

 

16 Responses

  1. Your post is so timely for me. I also had two similar experiences at my boys’ school this school year, and am feeling the frustration you discuss. I have read your blog for years, and have always admired the FA work that you have done for John, and in return, others. I have now found out that my boy’s IHP’s are not being implemented properly. As a result, I am pursuing 504’s like you have always discussed, and I am working with 2 other moms on updating our school and district’s FA policy. It really does take a lot of work, and time, and constant education and re-education to make these safe procedures the norm in school for children with FA. I am hoping that in 20 years when our children are the adults, this will be second nature when they are running things. It will take our generation paving the (bumpy, frustrating) way for sensible FA procedures and protocols in order for it to become the norm. It gives me pause when thinking about all the groups and people in history who have worked so hard to pioneer for change in so many arenas. This is ours. And we do it for all the reasons you mention; for our children, to help keep them safe, to teach them to advocate for themselves. All the best to you Kelly, and thank you as always.

  2. I feel for you and your child and family. We have four kids two of whom deal with intense seasonal allergies. One has a single food allergy too, plus is allergic to cats. The other has always been allergic to peanut, added all dairy two years ago, and now several other fruits, veggies and wheat, yes gluten. Sooo his symptom read like leaky gut and getting appropriate health care is a struggle and a work in progress. Thank goodness for all the grass roots work out there, and friends on the same path, and bloggers like you.

  3. I don’t understand why a nonfood award won’t work. It’s so incredible I didn’t get a real sense of compassion, or concern or understanding or creativity from the teacher. It’s so terrible we have to resort to policy to insure compliance. Great that John was able to participate with you. I’m frustrated for you too. I admire your persistence. You are a great model for all parents of food allergic kids. It’s so hard!

    • I totally agree with Mary that the tone from the teacher seems to lack empathy and compassion. And the comments about birthday celebrations (at Parent Information night) were ridiculous. Thank you for all that you do to advocate and teach us how to advocate for our kids.

  4. Thank you for writing this blog! I will be strong and not timid throughout my son’s years in school. I will pray that this only makes John stronger and that much more compassionate of a person. My little guy is only 4 years old and preschool has begun. The first birthday treat was brought in (unsafe for my ds) but handed out to all the other children anyway. My son was happy he had jelly beans, but I am sure the older he gets the more left out he will feel. God bless the Canary Project, too.

  5. Ugh, I’m so sorry!!! 🙁 I was kind of flabbergasted at the teacher’s insensitive remark about birthdays made as well. Good for you, I’m glad John went along to the meeting, but I’m sad that he also had to witness the seeming reluctance (and unwillingness, if I were to judge) to accommodate from the teacher’s part, even though she seemed to maintain a cordiality and limited “understanding.” So disappointing. I’m more sad that you had to wave the “contractual agreement” and “file a complaint” flag; I wonder if this teacher would turn right around and complain about this to her colleagues. Which, doesn’t really matter in the end, it’s more that you’d like people to grow in their understanding and compassion for people with food allergies. So glad you were able to go with John and be his advocate literally at his side! I’m sure it made him feel better, even if he was still frustrated.

  6. Thank you for your constant advocacy for FA children!
    Our son is 6 years old with very similar allergies as your son. We do not have a 504 plan yet for him. So far his preschool and elementary school have been very accommodating and safe. The part that my husband and I still feel that is missing is inclusion. That can be very difficult to help people understand.

  7. Oh, Kelly. I’m so sorry. It must seem like Atlas rolling the same Boulder up the same hill every day. Between my two sons we deal with IgE, FPIES, fructose malabsorption, histamine intolerance, and salicylate sensitivity. With all those complicated food issues, my husband and I have decided the sanest and smartest thing is to homeschool our kids. It will be a challenge for our family to do so, but I know I’d go absolutely insane dealing with the attitudes you just described!

    Still, even though homeschooling is in our future, I’m a huge proponent of actions like California’s. (You never know; homeschooling may not be the right educational fit for my boys, in which case I’ll have to enroll them in schools, like it or not.) So, yay for stocked Epi-pens!

    Is there any educational advocacy program you know of, grassroots, even, where families go into schools and educate about food allergies and intolerances? Just wondering. Thank you for all you’ve done and continue to do!

  8. I find it so incredibly sad that these teachers can’t “think outside the box” and find a non food reward! Especially when it’s a life threatening issue! I admire your constant dedication to this cause and my prayers are with you and John that someday this WILL get easier!

  9. I am just dumbfounded that some people just do not get it. Why does there have to be food in class anyway?? So far I have been very lucky with my sons teachers they seem to understand but it would be safer if there was no food in the class.

  10. I don’t understand why the food allergy community doesn’t put more effort into making the food supply healthier, removing, BPA, etc. Your anger should be directed at Monsanto, ADM and other big corporations who have poisoned the food supply and not at the child who missed eating PB and J for lunch.

    • Willa, Kelly isn’t directing any anger toward a child. She is frustrated with a teacher who is failing to keep her child safe. It is unclear what has caused the increase in food allergies. You have a theory that might or might not be valid. Even if Kelly agreed with your theory and lobbied Mosanto and the other corporations, she would still need to address the immediate threats to her son, which is the food right in front of him. Maybe you should think about where to direct your own anger, and have some empathy toward mothers who are trying to keep their kids alive.

  11. My oldest son has many food allergies. We’ve been lucky to have great experiences as he goes from grade to grade, school to school. His teacher this year does give out rewards, but they do not have anything to do with food and the kids are thrilled to be able to sit next to a friend in class or get time on the teacher’s computer, etc. Would I love to bring in cupcakes for his birthday? Sure, but kids find joy in so many other things! I still don’t understand why food is the first thing that comes to mind when a reward or praise is earned.

  12. Kelly, Sorry to hear that this is still an issue in your son’s school. We all learn so much from your experiences — the good and the bad ones. My son will start school here in Switzerland next year. Thankfully, he will come home for lunch, but I think I will still need to do a lot to prepare for next year and the ongoing management of his allergies in the classroom (parties, treats, etc.). I will remember this post as I’m having conversations with his teachers in the near future. Many thanks!

  13. I’m glad you were able to bring your son along, it’s terrific that he can start participating in this. I’m sorry this is still a frustrating process for you. A night without homework seems like an excellent reward for a 7th grader. Sounds like John’s choice would be clear even if nothing changed–did it occur to the teacher to just use that? Best of luck with the resolution of this.

  14. Hi,

    Awesome post.I loved your ways how you shared everything step by step. I will share this post with my followers, hope they will love it.
    Thanks to share this useful post with us.
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    varija tripathi

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