Schools

I have been hearing from many of you (in comments, emails and when we've met live) that capping off your day-to-day struggles of managing your child's food allergies has been the push-back that you've been feeling from your kids' schools. It sounds like the challenges come sometimes from resource constraints, but mostly from lack of awareness - either of the severity of the risk associated with food allergies, or of how to implement easy but critical safety procedures into the day. This has resulted in increased stress, near misses, and even reactions, and some of you have opted to home school because you felt that was the only safe option. It is scary enough when you don't have a child with additional needs to send him/her to another location each day and hope that the kids and adults around them will treat them with love and support; when you DO have a child who needs extra protection, the stress-o-meter blinks red all the time - even when you're around - and when you can't be around, you hope that the people who are will look out for your child as carefully as you would. I want to cry when I hear of schools that don't provide food allergic kids with a safe environment, as I know how terrifying that must be for the parents every single second that their child is there.

We were incredibly, incredibly fortunate to be surrounded by an amazing community of teachers, parents and kids who opened up their hearts and minds to learn about food allergies and to be our partners in creating a safe environment for A&A when they were allergic. Our schools went truly nut-free for us, and welcomed us into the process of selecting the food for snacks, training staff on EPI-pen use, sending home informational sheets to parents, passing out samples of allergen-free food, and more. A&A were able to participate in all of the food making, and eat all food served, in their preschool.  The school referenced the Jewish value "pikuach nefesh" – loosely translated to ‘saving a life’ - when informing families that dietary restrictions prohibiting the bringing of nut products to school were needed to best support children with severe allergies. Rather than paint food allergic children as a nuisance, the situation was seen through a compassionate, supportive lens. When I sent our former preschool director a note last week, telling her of the boys' progress and thanking her for all that she did to make us feel safe in the years our boys were in her care, she made me cry with the following response: "Incredible. We're so happy for you. We all learned together with your family so much about allergies, and we all rose to the occasion with much guidance and support from you and Orr. And mainly, we believe that it's an obligation and a privilege to do whatever it takes to support each and every child and family. I have to thank you for the partnership, support and mutual learning." There I sat, eternally grateful for all that she did, and she was thanking me. If there were awards given for most supportive and knowledgeable food allergy schools, A&A's former preschool and current day school would absolutely get my vote.

I did have a taste of a different reality when we looked at kindergartens for Ari. I toured the local kindergarten back in 2011 and asked the principal about their procedures for supporting kids with food allergies. She rolled her eyes at me - seriously - and let out an annoyed sigh before telling me, "Of course I'd have to negotiate a 504 plan with you, but I can tell you right now that I can't comply with it. I just don't have enough teachers to wipe down tables and things like that." I was stunned. I grew up in this lovely area, with its much acclaimed schools. It was quite a contrast, coming from our amazing preschool, where we were never made to feel like a burden or annoyance, to hear from a principal that she understood the legal obligation to provide a reasonable accommodation for a child's food allergies (which is what a 504 plan codifies), and would even sign the document acknowledging that, but couldn't/wouldn't actually comply. Well, compliance with that plan would have been the difference between our kids having life threatening reactions or not, so we walked away. I am well aware that we are very blessed to have had the luxury to walk away, and how much more blessed we were to have found the amazing school that we did. The school they are at now brought together teachers and administrators to talk with us prior to school starting to understand what would be safe and what wouldn't; they made the Kindergarten nut-free; they implemented processes to wipe down art supplies and music equipment before Ari's class used them; they arranged conversations with the school bus driver to make sure she knew what symptoms to look for and was trained on EPI-pen use, and she agreed to wipe down Ari's seat before he sat down every single day; they invited us to speak with the other families, and made sure they used a consistent message of importance and support; they called us to comfort us at 9pm the eve before the first day of school when we got nervous about how certain food issues would be handled; and they made Ari feel welcome - and us feel safe - every single day. They even rolled with it when we came to them last summer, before Aviv started, and told them about the clinical trial and the changes that would bring, and the role they would need to play in observing the boys. They've been supportive all along, and have celebrated with us with each milestone along the way. The kids in Ari's class celebrated him in class by congratulating and hugging him last week when he went negative, and the parents in Aviv's class - excited that they could actually bring PB&J's again - celebrated the progress and our joy along with us.

I'm sharing all of this to say that there are amazing, supportive schools and parents out there. There are also some who aren't, but sometimes it just comes from not understanding. Not understanding that there are really good peanut butter alternatives. Not understanding that mandatory hand washing as kids walk into the classroom not only cuts down on accidental food allergy contamination, but also keeps regular 'ol germs at bay. Not understanding that a policy of not sharing food is one that most parents prefer, food allergies or not. Not understanding that providing safe packaged treats (if treats must be given at school), rather than homemade ones, is not difficult. Not understanding that there are all sorts of nut-free foods that can be given in lunches, including the beloved 'bars'. Most of all, not understanding that what we're talking about is not a food dislike, nor a diet or preference; what we're talking about is a food that - if your kid has on his hands, and then touches the toy that my kid plays with, and the nut oil residue gets on my kid - can kill him. Our experience is that once people understood what was at stake, and how important it is that we all contribute to creating a safe environment (and they saw what we were willing to do to make it easy for people to do so), they were on board. We wrote letters to every parent at the beginning of each school year introducing our child, our family and our situation. We asked them for their partnership in keeping the school nut-free and provided them with grocery lists of nut-safe food items (by brand and store) to make it easy - we had already read all the labels and spoken to all the manufacturers, why not make other people's grocery shopping easier? We always volunteered to find the safe brand for any school food project, whether pizza day, baking projects, holiday treats, etc. We talked about the human side of this experience for us and our sons, not legal entitlements or angry disappointments. We organized play dates at our house or at parks to try not to burden other families with trying to sanitize their homes. We arranged for samples of certain allergen-free food products to be brought in, and we taught our kids to advocate for themselves and always ask questions (and receive permission) before eating anything. We tried to be a resource to anyone with questions, and to be grateful for every bit of support and understanding that came. We were lucky, and want to try to help ease the experience for families who aren’t getting that support from their schools. If you think that any of our documents (letters or grocery lists) might help you to build awareness and partnerships in your own schools, even if just to inspire you, please feel free to leverage them. (There are also a few other docs there, including some travel tips for flying with nut-allergic kids.) Please note that I only had peanuts and tree nuts in mind when I did the 'safe foods' list, and that it has not been updated in over a year, so always read labels carefully for your own situations, and defer to more current labels or information. (Sorry - that caveat was the lawyer side of my brain talking.) Also, lots of great information is available from FARE, the organization that emerged from the merger of FAAN and FAI. FARE funds food allergy research, increases allergy awareness and advocates on behalf of food allergy families, and has useful information you can share with your schools to help them be supportive and safe, too. Together, we can build awareness and compassion, one school at a time, until a cure is found for everyone with food allergies.