When my oldest son went to kindergarten, I questioned everything. Would he miss me? How would he do on the bus, during lunch and the long day there?
When it was time for my second son with multiple food allergies to begin school, I thought I’d worry even more. But it was a completely different experience. Ahead of the start of school, I met with the teacher, principal and nurse. My son and I toured the classroom and cafeteria. He was introduced to his teacher and the bus driver.
We had a written 504 Plan and I had relationships with key staff members there. They were confident that they could take care of him and so was I!
I’ve read that airplanes are slightly off course up to 90 percent of the time when traveling to their destination. The pilot and the guidance system must continuously monitor and correct course.
Similarly, the foundation I had set did not ensure 12 years of smooth sailing. There were mishaps and misunderstandings over the years. We needed to adjust and course-correct throughout.
This is the norm when managing food allergies at school. Mistakes will happen. So, let’s go over some ways to work with others to avoid them or minimize their impact.
It’s OK to Be That Mom
When Emma, allergic to milk, announced that the teacher served hot chocolate in class, her mom was livid. Emma had reacted in coffee shops from . How could a teacher think this was an appropriate reward?
Amy was nervous to call the teacher. But she knew that if she didn’t, her daughter would be endangered again. Defensive at first, the teacher came to understood that even though Emma had said it was fine, she actually felt sad and scared when the hot chocolate was served.
Enforcing boundaries is never a once-and-done process. But if you’re clear that what you are asking for is appropriate, rest easy that you’re doing your job. Even if you are –that mom!
Make the Invisible Visible
There’s a lot of denial in the food allergy world. One advocate I know was accused by family members of exaggerating her daughter’s food allergies to get attention. Years later, her only child died of anaphylaxis at age 13. What were these family members thinking then?
When working with school staff, talk about the allergic reactions your child has had. Or share stories of other severe reactions. Photos of reactions can be powerful in combating the image in their minds of your perfectly healthy-looking child.
A picture often is worth a thousand words. Let them see how things can turn with that one wrong bite.
Know How to Negotiate
In the best-selling book Getting to Yes, the authors define negotiation as a “back-and-forth communication designed to reach an agreement when you and the other side have some interests that are shared and others that are opposed.”
That’s a perfect description of what happens when advocating for your child at school.
Parents usually want as much as they can get: , monitoring meals, appropriate clean-up, training etc.
From the school’s perspective, these take time and money. And sometimes result in other classroom parents resisting. These things are on their minds, whether they say so or not.
Make your case in a way that shows the staff that you have the same goals. Kids with food allergies have a right to be safe and included at school. No one wants a child to be harmed – at school or elsewhere.
Be Flexible with School
Jane didn’t see why her son’s kindergarten class had to serve snacks. In the past, she’d been able to convince the preschool to forego snacks altogether.
But the principal was adamant that students needed a snack to sustain them. In the end, they agreed to fruit and vegetables only, and her son did fine with this.
Psychologist Lisa Lombard uses a spaghetti metaphor to explain the importance of flexibility for allergy families. “When we’re flexible, we’re more like a cooked piece of pasta and we can go into different forms and be twirled around. But when we’re not flexible, we’re more like that raw piece of pasta that can snap and break.”Modeling this for our kids helps them see the benefits of flexibility as well.
Tame the Elephant
Psychologist Jonathan Haidt uses the metaphor of an elephant and a rider on top to describe the different parts of the brain. The elephant is the emotional, subconscious area of the brain, and the rider perched on top is the rational, thinking part.
All is well when the rider and elephant are in agreement. But if you’ve ever started a diet on Monday, only to be found in bed with a pint of Chunky Monkey by Tuesday night (or is it just me?), you know what we think and what we feel are not always in alignment.
There may be times when the emotional/elephant part of your brain will do a number on you. You, as the rational rider, may want your child to eat lunch with the other students. But the scared and powerful elephant will try to talk you out of it.
Remember, just because we feel scared doesn’t mean there is significant risk. Our brains have a negativity bias, so they’re always on the lookout for what could go wrong.
It can help to find an experienced friend or mentor who does a good job balancing safety and normalcy. For most things, it’s not if your child can participate, but how.
Food Allergies at School: Ask Don’t Tell
When the school tells you that they handle food allergies all the time, find out the details.
Who is trained to recognize and treat allergic reactions? What happens if there is an anaphylactic reaction on the bus? What about extra-curricular activities?
Posing questions allows school staff time to consider the weaker areas in their plans and procedures.
Vet Your Sources
“Schools have to evaluate your child for a 504 Plan.” “If the doctor recommends a peanut-free classroom, the school has to do it.” “The ADA says food allergies are a disability.”
True statements? Actually, not. But if you scour enough social media. you’ll find well-meaning parents sharing this information.
When you communicate with school staff and you say things that they know to be false, you lose credibility in their eyes. Seek information from reliable sources.
The Department of Education’s Office for Civil Rights and the CDC’s Guidelines for Managing Food Allergies at School are two great places to start.
By the same token, when a school official tells you that they can’t do something because of guidelines or policy, politely ask them for the source. In some cases, they have misinterpreted or misunderstood the laws.
Your Child is More Than an Allergy
It may sound counterintuitive, but you want your child’s teachers, nurses and principals to see beyond their medical condition. A child’s food allergies are just one piece of the puzzle of who they are.
Let the teacher know how much your child loves dinosaurs, princesses or her new puppy. Help them understand that your child is shy, scared or has an abundance of energy. Encourage them to appreciate the whole child – who is so much more than a diagnosis.
Advocate Like Life Depends on It
When my son was in kindergarten, there were four kids in his class with food allergies. Twelve years later, Sarah* one of the girls with allergies spoke at their school graduation. It warmed my heart to see her at the podium.
Sadly, the story doesn’t end there. While Sarah was home on break from college, she ate a cereal mix that contained her allergen. Although she was given epinephrine and life-flighted to a trauma hospital, she succumbed to her injuries from the reaction a few weeks later. She was 20.
There is no day off from food allergies. The danger is always there. You’re not crazy. And you’re not imagining it. We know this.
Now it’s time to help others understand as well.
*Name changed for privacy.
Gina Clowes is the former Program Director for the CDC’s National Guidelines for Managing Food Allergies at School and Early Care Centers. She has created the “Safe at School with Food Allergies Program.” Learn about this comprehensive training program at AllergyMoms.com/safe.
From Dept. of Education’s Office for Civil Rights: Basics of Section 504 and 504 Plans
CDC Guidelines for Managing Food Allergies at School and Daycare
Food Allergies and the Cafeteria: Safe, Inclusive Options