Nothing's Impossible: Food Allergies & Inclusion
Allergy Force caught up with Leah Robilotto, Founder of The Food Allergy Institute. The Food Allergy Institute (FAI) provides support to food-allergic individuals, their families, schools, communities, workplaces, advocating for safe inclusion and developing and implementing programs to achieve it.
Why the Food Allergy Institute? Leah was inspired by her older son – who is severely allergic to dairy, wheat, eggs, avocado, peanuts, tree nuts, fish, and latex. At the time, she worked in marketing in financial services and was exhausted from being pulled in a hundred different directions —from balancing a demanding work schedule, to dashing to doctor’s appointments, to running interference with her son’s school to keep him safe. There was never enough of her to go around. She was living on coffee and wine. Not good. The mom guilt lay heavily on her shoulders.
One day she got the phone call at work that every food allergy parent dreads. Her son was having an anaphylactic reaction. She threw her papers in her bag and walked out of an executive board meeting. A colleague’s words trailed her out the door,
“Oh, another mom vacation…”
What followed was an incredibly stressful 3 days. Leah recounts, “I couldn’t balance it all for another second as a working mom. My mental health, my son’s physical health and my family’s stability was at stake. So, I quit. I walked away from a career I’d worked incredibly hard to build.”
Leah then looked for psychological help, for counselors who could help her work through the mom stress, anxiety and guilt, but it wasn’t her to reach out for this kind of help.
Living with food allergies affects every aspect of family life.
“How do I live with this?” she wondered. The questioning and self-reflection spurred her to become the expert she needed.
She returned to school and completed a Master’s Degree in Child and Adolescent Psychology at the Chicago School of Professional Psychology, with a focus on chronic illness and its psychological impact. Her thesis focused on the safe inclusion of children with food allergies. She dug deep into volumes of fundamental quantitative research from food allergy authorities such as Dr. Ruchi Gupta, Professor of Pediatrics and Medicine at Northwestern Medicine and Director of the Center for Food Allergy & Asthma Research (CFAAR), Dr. Tina Sindher, Clinical Assistant Professor, Medicine and Clinical Assistant Professor, Pediatrics-Immunology and Allergy at Stanford University, and Dr. Scott Sicherer, Professor in Pediatric Allergy and Immunology at Mount Sinai. While working on her degree, she joined the Food Allergy Research & Education (FARE) organization’s education department and conducted outreach programs.
The Food Allergy Institute’s mission is to help families and schools do a better of job managing children with food allergies, including inclusion. Leah explains, “Schools think keeping kids with food allergies at an isolation table is the way to keep them safe. When children sit at that table, they miss out on learning important social skills. It highlights their differences.”
How can schools become more inclusive? The best way to fight food allergies is to teach:
To teach children to eat only their own food, to wash their hands when they come to school, before and after meals and after class. No, using hand sanitizer gel to clean hands is not good enough!
To help sensitize teachers to the downside of using food as the reward system and suggest alternative approaches that get the creative juices flowing.
“Food is definitely a big part of our lives,” Leah explains, “but there are other avenues to teach besides food. Do you really need to teach the phases of the moon with Oreos?” She continues, “Everyone’s different, and with some thought, you can use other avenues to reward and to include that don’t highlight children’s differences, make them targets, and possibly increase their risk of being bullied.”
“We want to include everyone – not in spite of their differences, but because of their differences.”
Through her work, Leah talks to and learns from children extensively.
What would they change?
What do they think inclusivity means?
What would put a smile in their learning day if they could choose?
She’s found that food isn’t as big a deal to children as it is to adults when celebrating birthdays. She explains, “When I asked kids how they’d choose to celebrate birthdays, they overwhelmingly picked non-food options like a treasure box, extra recess, an automatic “A” on a quiz, a dance party, or a homework pass versus a cupcake.” She found that the children who chose cupcakes often come from more economically challenged homes where the budget doesn’t stretch to ‘extras’.
“Inclusivity starts with kindness.”
The mission of The Food Allergy Institute is to help schools do a better job of safety and inclusion of children living with chronic illnesses, specifically food allergies.
For example, instead of isolating a child with peanut allergies at ‘the peanut-free table’, integrate the child into the regular table with classmates, assigning the child to a designated seat each day, giving that seat a special wipe down before and after lunch, having classmates wash their hands before and after lunch and seating kids with peanut-ingredients at the other end of the table.
For example, teachers use candy – like Skittles or M&M’s – to teach math concepts. Why not river stones? Or pencil erasers? Or stickers? Or pebbles?
For example, a teacher uses Oreos to teach the phases of the moon though a quick explore of Pinterest unearths a treasure trove of fun options that do not involve food like black and white clay, paper plates, Styrofoam balls, white t-shirts and a bit of glow paint. Glow in the dark paint and a black light can be magical.
Sometimes, veteran teachers will resist change, their mantra being “this is the way I’ve always done it”, without even realizing that small changes can lift the pressure of keeping children with special conditions safe off their shoulders, while infusing fresh fun into tired lessons.
How do you teach kids inclusivity? “You lead with kindness,” explains Leah, adding “If what I do doesn’t start with kindness, then I don’t do it. I’m not perfect. I lose my temper and am embarrassed by that and always apologize. But solving the inclusion equation at schools for kids with differences needs to come from a place of kindness.”
“Could a greater miracle take place than for us to look through each other’s eyes for an instant?”
—Henry David Thoreau
General awareness of food allergies is increasing and people are taking it more seriously in the media. Today, groundbreaking research is:
Helping us dimension the prevalence of food allergies in the US and spurring increased investment in food allergy research,
Delving more deeply into the psychosocial impact and quantifying the hidden costs – soft and hard -- of food allergies,
Exploring hypotheses about the root causes of food allergies from multi-disciplinary perspectives, and Developing therapeutic options for mitigating the adverse effects of food allergies pending a cure.
In 2019, the Asthma and Allergy Foundation of America , with support from DBV Technologies conducted an independent research project to assess the impact of ‘Life with Food Allergies’ on families living with them. Since food is fundamental to many daily activities and social situations, families with food allergies live in a state of hyper-vigilance to keep their children safe. The 24:7 fear of an anaphylactic reaction and its devastating consequences causes many to adjust their daily routines and selectively withdraw from social interactions – every meal, every new environment is a minefield of potential risk. Innocent ‘fun’ we should be able to take for granted as part of childhood and growing up – like birthday parties or sleepovers or playdates – become high risk situations to be analyzed, negotiated, navigated. The study found that parents of children with food allergies can experience anxiety, depression, isolation and stress from living with the constant risk of a life-threatening allergic reaction and the social challenges allergic living imposes on their families.
Mental health is as important as physical health. Immersed in the day-to-day nits and grits of raising their children with food allergies, moms in particular experience high levels of depression, fear, isolation, anxiety and stress.
Leah offers some practical suggestions for moms caring for children with food allergies, as well as other chronic illnesses:
Take care of yourself. If you are feeling anxious, depressed and isolated you are not healthy. Find outlets – time for friends, time for yourself. You cannot let an illness take over your life.
Know your boundaries. ‘No’ is a complete sentence. You don’t have to explain why your loved one doesn’t eat something. You don’t owe anyone explanations or apologies.
Trust your instincts. If you feel something isn’t right, trust your gut. Often your gut knows before you cognitively process a situation that something is wrong.
Carry epinephrine at all times. Keep it within arm’s reach at all times. Seconds matter.
Know the signs of anaphylaxis. Never second guess the need to use epinephrine, even if symptoms are presenting differently. Better to inject and be wrong than not inject and be too late.
“Allergies are becoming part of a bigger conversation with more voices than even 5 years ago.”
As a food allergy parent, when a person asks you about your child, you don’t lead with food allergies. Maybe your son is empathetic and good at sharing. Or your daughter has a great sense of humor and a soft heart for old dogs. We don’t start with the more challenging aspects of a person’s personality when we try to help others know them and love them as we do. “Food allergies are a very small part of the whole person,” Leah ventures. “Everyone has something.”
While Leah is encouraged by the level of advocacy in the FA space, it all really starts with the individual person and their openness to try new ways to solve old problems. “It’s about changing the conversation with schools so every child with food allergies feels safe and included,” offers Leah, reflecting that, “not everyone is going to like you. Not everyone is going to be kind. Life is not always going to be easy. It’s not always going to be fair. But how you choose to react and allocate your scarce resources, you control that.”
The Food Allergy Institute offers solid programs for schools, workplaces and communities to promote inclusion of children living with food allergies. Programs that target bullying and depression in students are also available. From the early diagnosis stage, The Food Allergy Institute helps families find a balance between living with food allergies and living a full life. It is a daunting process to launch a new organization like the Food Allergy Institute, but with the help and support of the food allergy community to gain visibility for its mission, the Food Allergy Institute’s positive impact will be far reaching.
Thank you, Leah Robilotto, for your vision, determination and courage to help make kids living with food allergies, ‘just one of the bunch’ throughout their academic journey.
“… be the change you wish to see in the world.”
Interested in lending a hand? Reach out to Leah at Leah@foodallergyinstitute.com if your school or community could use help creating a more creatively inclusive environment.
The Allergy Force Changemaker Series shines a light on movers and shakers in the food allergy community who drive change and bring positivity to the space for the benefit of the entire community.
Photo Credit: Thank you to the Food Allergy Institute for use of the post image