In 2004 I had my first food allergy policy conversation in John‚Äôs 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‚Äôm 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‚Äôll never stop talking. I‚Äôll never stop fighting. And I‚Äôll 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.‚ÄĚ ‚Äď CAFA Advocates”
It‚Äôs 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‚Äôve 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 ‚Äúif 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‚Äôve had conversations with my kids‚Äô teachers about sensitivity toward food allergy policy in the classroom. During parent information night in one of my kid‚Äôs classrooms, a teacher was going over classroom policy and procedures; absences, make up work, tardy policy etc. Then it came down to the ‚ÄúBirthdays‚ÄĚ line item. The teacher‚Äôs comment was ‚ÄúBirthdays. Yeah. Well, you can see I didn‚Äôt write much about that. Because now we can‚Äôt have food for birthdays anymore because of all the food allergies so there won‚Äôt be much celebration I guess. So, birthdays are not really celebrated.‚ÄĚ 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 ‚Äúso what would you like me to do?‚ÄĚ He simply said, ‚Äújust please don‚Äôt embarrass me. ¬†But I am bummed‚ÄĚ. 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 ‚Äď bring John with to the meeting so he can discuss his concerns too. Brilliant, I thought! He‚Äôs 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 ‚Äď I‚Äôve been having mine regarding John since 2004. Yet, 10 years later, I‚Äôm sitting next to my son, having the SAME conversation. Different teacher, different circumstance, but it‚Äôs the SAME conversation.
Me ‚Äď ‚ÄúJohn 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‚ÄĚ.
Teacher¬† – ‚ÄúOh I‚Äôm sorry, I thought it was OK when I said at his 504 meeting that I like to serve these little treats.‚ÄĚ
Me ‚Äď ‚ÄúNo, 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 ‚Äď John‚Äôs as allergic to dairy as he is to nuts. And he has severe asthma. This isn‚Äôt OK. And there is no food in the classroom. Can you explain the pizza party reward please?‚ÄĚ
Teacher ‚Äď ‚ÄúIt‚Äôs a coupon for homework night off or pizza for child and two friends at lunch.‚ÄĚ
Me- Is it possible to use a coupon for a non-food reward?
Teacher ‚Äď Well I don‚Äôt 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 ‚Äď How about (gives a non food recommendation)?
Teacher ‚Äď No that wouldn‚Äôt really work because of XYZ.
John ‚Äď Oh. OK.¬†
Me ‚Äď Per John‚Äôs 504 Plan, there is no food to be given or used as reward. That‚Äôs 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‚Äôs allergy at school and make sure from this point forward we have an understanding.
Teacher ‚Äď Well I certainly respect your viewpoint and what you are saying.
Meeting is concluded. John and I leave the classroom and I can see the frustration in John‚Äôs eyes. He saw the frustration in mine. Because, though the meeting was overall nice, positive and helpful, it doesn‚Äôt 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‚Äôs 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 ‚ÄúFRUSTRATED.‚ÄĚ My answer back ‚Äď ‚ÄúME TOO.‚ÄĚ
Side bar ‚Äď I‚Äôm 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‚Äôs 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‚ÄôBrien, author, advocate and founder of AllergyKids, and Bob Sears, MD author and pediatrician. Hope to see you there, and if you can‚Äôt please consider making a donation on behalf of your own child to this organization. Because this project is for all of US.