by Janette Kennedy, MAEd
I painted this picture when I was expecting my daughter. There are cute little footprints coming out of the river, and my hope of seeing her summit her dreams. Most of the picture, though, is the cover of the jungle: the insects and upturned leaves that hide the unknown that she will travel through in this life.
As parents, one of our most important jobs is preparing our kids to navigate a world we can’t always see, and sometimes, one that we struggle ourselves to make sense of. Already, her world is so different than mine.
She has life-threatening allergies. I often say food-induced anaphylaxis to really make the point that one trace of one of her allergens could mean a fatal reaction.
How do I equip her to live in a world where food that is healthy for most, could kill her? How do I help her deal with the social implications of feeling anxious when an impromptu teen pizza night comes up? How do I help her focus on the spontaneous and independent decision-making that is a necessary part of growing up?
The life of someone with food allergies always involves some risk. It’s a matter of managing that risk and being prepared when all else fails. It’s a world where you practice avoidance and always have epinephrine on hand, because all it takes is one mistake. For all the exciting research out there, there is no cure yet.
I knew I needed to face the depths of that jungle, the scary parts, because she is getting older. Teens and young adults with food allergies are at highest risk of fatal reactions for a number of physiological, social, and developmental reasons, even if they have never had to avoid “may contain” or only had mild reactions before.
I am a FAAM Advocate and helped create and co-lead WITT-We’re In This Together with Kelley Barnett, FAAM's President. WITT is a group for parents and tweens to learn about and discuss: researching safe foods, talking to restaurant managers and activity organizers, teaching family and friends how to use epinephrine, and being able to recognize, ask for help, and use epinephrine in the midst of a life threatening reaction.
You want to know what scares me the most? When I was an adolescent and things got confusing, too socially complicated, or I felt self-conscious, I went off on my own. I got quiet. It would all be ok if I just toughed it out. These very normal coping strategies though, will put my daughter at even more risk if they are what she learns to rely on. Her jungle really is very different from mine.
Meeting with other tweens and parents in WITT enabled her to connect with other kids who were in that jungle. It helped me, as a parent, to see other parents who, just like me, are strong on the outside and have so many doubts and fears on the inside. What it also did, was help her to express those things she wasn’t sharing with me because she didn't want to worry me. I got to hear that just like me, she can be really strong on the outside for the people around her. Hearing other kids’ experiences and concerns, made it okay for her to be vulnerable.
She will tell you that her favorite parts of WITT were getting to meet other “cool peeps” with food allergies, getting to practice with real epinephrine auto-injectors on grapefruits, and visiting a restaurant.
Actually “stabbing the grapefruit”, as the cool peeps called it, was one of the best activities for all of us. Dr. Jay Lieberman, FAAM's medical advisor, talked about food allergies for a bit, and then it became a tween Q&A, with a few parent questions sprinkled in. So often, kids listen as parents and doctors talk. It was time that they had a chance to take ownership and talk directly to an expert. It was also so important to directly address their fears about using epinephrine, a fear they all shared. Each one of us, and especially the kids, left that day knowing that epinephrine is a safe medicine and felt more confident in being able to use it.
Another phenomenal and life-changing experience was our group’s visit to Next Door American Eatery-Memphis Crosstown. Next Door is free of peanuts and soy, and has a designated gluten-free fryer*. Any food allergy parent will tell you that ordering food at a restaurant is one of the most stressful experiences ever, one miscommunication could have devastating consequences.
As parents, we talked about things to pay attention to at restaurants, and then the kids got a direct talk and Q&A with the restaurant's general manager, Brian Bazar, who showed them that any place worthy of their business would take their food allergy seriously. He talked about good communication strategies, what to ask for, and we discussed what to do if a server wasn’t taking their needs seriously or responding well. Then, he took us into the kitchen where Chef Derek showed us their process for flagging food allergy orders and preventing cross-contact of allergens so we had a concrete example of what those processes can look like. My family has eaten there a few times since then, and it’s a great experience to help my daughter build her confidence and practice how to visit a restaurant, as we talk about things to consider and ask each visit.
Perhaps one of the best conversations the kids had was about how food allergies are only one small part of who they are. We talked about their dreams too, and strategies for making goals reachable. We also learned about label reading, building a supportive network among family and friends, and strategies for asking for what we need from friends, something I can always get better at too. Our sessions rounded out at the end with self-care; because the anxiety and exclusion of food allergies takes an emotional, and sometimes even social, toll.
We covered so much, but in reality, all we did was start the conversation about these subjects. I understand more now about how my daughter experiences food allergies and we will talk more and practice problem solving as she begins to take the lead into the jungle of the unknown.
*Always check this information with each visit as information may change.
Food for Thought is the blog for the Food Allergy Alliance of the Mid-South. FAAM's mission is to provide food allergy support, education, advocacy, fellowship & fun for Memphis, TN and surrounding areas.
If you have a medical emergency, call 911 immediately and follow up with a physician.