Two words, Sabrina Shannon. This bright-eyed and freckle faced 10-year-old girl made a first person radio documentary that told her story, in her own words, about what it was like to live with food allergies. “A Nutty Tale” aired on CBC in Canada, and was widely regarded as a realistic yet powerful look into a child’s perspective of living in a food allergy bubble.
Tragically, Sabrina died two years later from an anaphylactic reaction suffered in her school’s cafeteria. Many of us who have FA children know Sabrina’s story well and the 2006 law that was passed in her honor to help protect food allergic children at school. If you are unfamiliar with Sabrina’s documentary or story, see it here. I promise your life will be changed forever after hearing Sabrina’s sweet little voice over powerful messages about what happened on that fateful day. Every single time I hear Sabrina’s story I’m literally shaken to my core and knocked down at my knees. All I can think of is that my own bright-eyed and freckle faced 8-year-old boy could easily suffer the same fate, any day, at any time. As a mother, there is nothing that compares to the knowledge that your child is in danger. Mothers of FA children have this fear, either consciously or unconsciously, every day we send our kids to school, parties, camps, field trips or even simple trips to the park. We never know when a mistake will happen. All we can do is prepare for the worst and hope for the best.
Sabrina’s documentary and her story is THE most powerful piece of knowledge I can give to other moms, especially non FA moms, about what my reality has been like since 2003. I don’t expect them to ever fully understand my reality, but I do hope they try. Whenever I advocate for stricter policies at schools, especially when it comes to enacting a food free policy in classrooms I am always thinking of Sabrina Shannon, and how an innocent misstep can cost a life. Mistakes can, and do happen. In my last post I wrote about my son’s religious education teacher handing out Dunkin Donuts as a reward during class, and I also wrote about how I was never notified and the teacher was going to get an earful from me. I talked to the director of the program who apologized and said reminders were sent home with the students (we didn’t get one) and my son was told multiple times of the reward (my son has an auditory memory issue and to leave anything to him to relay back to me is very risky…it won’t always get back to me) and parents were emailed as well (the teacher had my old email address). Add all this up and you have a perfect storm for miscommunication and a potential breach of safety in my son’s classroom. My son’s 504 Plan specifically states that no food is to be served in his classrooms without approval by me. Obviously the 504 wasn’t followed, which is a liability issue for them, and a major safety issue for my son. And for what? Donuts.
We came to an agreement that the best option for a one hour religious ed class is to reward students in a non food manner, in fact John’s idea for a reward was extra time on the playground or a game of Hang Man. Simple but effective, safer yet healthier for not just the kids with food allergies and diabetes, but for all the kids. I have said time and again I try so hard to look at the food issue in classrooms from all perspectives, never just from my own. I always hope other parents see my perspective as one based in simply trying to keep my son safe and alive, and that I am genuinely not trying to be a pain in the ass. Or combative. Or thinking my way is the only way. I am always looking at what is a good solution for EVERYONE involved. I believe in the greater good, and that people in general would never want to put my son or other FA in harms’ way, or to exclude them and make them feel socially awkward for their medical disability. However, despite my best efforts to do this, there is always someone, somewhere who passionately disagrees with me, to the point of calling me out on my beliefs, or telling others how their experiences are different from mine. I’ve heard many times (always through the grapevine of course) how my advocacy efforts are viewed as something that is more annoying than helpful. I’ve also heard how passionately other moms feel about their children’s right to keep treats and food in the classroom, that it is a part of childhood. My son’s allergies is an inconvenience to the class and that their kids are missing out on the treats of childhood.
The primary difference between my viewpoint and the other one is, well, life or death. It really is that simple. Yet, it isn’t. People want food in their children’s classrooms and they are gong to fight long and hard for it. All I want is for food to stay where it belongs; in the lunchroom. Food allergy issues aside, kids should eat their meals in one central place at a table. Their desk and classroom is for learning. Not for endless snacking and eating. Now, putting the food allergy issue back into the equation, it really should be a no brainer. (For the record, as I’ve always said, I don’t believe in food bans in the lunchroom and never have. It falsely promotes a sense of security that the area is safe and free of allergens, which of course is nearly impossible to regulate).
When I became a mom nearly 11 years ago, I never once thought I’d become an advocate, whether for my son’s medical condition or for my children’s learning disabilities and special needs. I also never thought I’d get so much backlash and negativity. Call me a Pollyanna, but I really think we are meant to learn from our challenges, to be compassionate and empathetic to others, and to always strive to think the best of each other. I believe we are all doing the best we can with what we’ve got, and that it is time to let go of anything that doesn’t serve us or others well. For me personally, I’ve had to take a long look in the mirror to see where I’ve made my mistakes, and how I can do better in my job as a mom, an advocate and a writer. It’s truly not the challenge itself that matters, it’s how we handle it that does. I may never get a food free classroom for my son, he may never outgrow his allergies, there may never be a cure, my kids might always struggle in school, I might always have to fight for IEP’s and 504’s, and I’ll probably always have to acknowledge the sneers and jeers for my efforts. That’s OK with me. It’s all worth fighting for. And children like Sabrina Shannon and John remind me to never stop trying.