Imagine this. You are eight years old. A silver bracelet with a red snake emblem rests on your left wrist. It has always been there. Your best friend doesn’t have that bracelet. In fact, not one single person you have ever met has that bracelet. It makes you feel both special and alone. For an eight-year-old, your knowledge of life is already quite mature. Your responsibility for yourself and your awareness of the fragility of life are more adult-like than that of some of the adults you know. So much so, that your friends’ parents enjoy having conversations with you because your understanding of the world is already at a level far beyond your friends and any children you have met. Because of this, most adults looking after you never worry about your allergies. You assert yourself by asking questions and never eat anything unless you know it is safe. They know that you and your little purse filled with Epi-pens and Benadryl are an inseparable force of protection. You are never a burden to adults because you are the most responsible, independent, self-aware child they have ever met. They trust you just like you trust yourself.
This was my life as an allergic reactor. To be taught to “react” to situations and be responsible for my own safety before I even understood what the word responsible meant. To be able to recognize my allergens on a box before ever learning how to read my first book. To be independent and self aware before I was even considered old enough to walk to my next door neighbors house alone. It is a unique and different start to life. It didn’t take away from the wonder of being a child. However, I was always acutely aware of how different I was from anyone else I knew.
When I read about FAACT’s Camp TAG, I imagined what it would be like to have grown up feeling not so alone with my allergies. For this reason, I wanted to experience it for myself. I grew up spending summers at both day camps and overnight camps. I was always the camper with anaphylactic food allergies, so I was especially curious to check out a camp where everyone already lived in my world and understood it, no explanations necessary. To spend a week with the freedom not to carry the responsibility of my Epi’s, watching who sat next to me and what that friend was eating. It would have been an amazing relief. To remove that constant responsibility I always felt and to just be able to play like everyone else without any worry. That is a priceless experience and one that isn’t easy to find! However, when I visited Camp TAG last summer I felt it. I witnessed a special kind of freedom.
Camp TAG, a week long day camp for kids with food allergies and their siblings, was established by FAACT President and CEO, Eleanor Garrow-Holding. When Eleanor was searching for an allergy-safe summer camp for her son, Thomas, she could not find any safe options. She decided to create one for her son and other kids like him. She wanted him to have a safe, summer camp experience.
I arrived at Camp TAG, New Jersey, on a humid summer day in late July. I met Eleanor Garrow-Holding and Linda Brydges, the Director of Programs for FAACT, cheering on a game of “knock out” at the basketball court. They introduced me to their own kids, as well as other campers, counselors and staff. Within the first few minutes of my arrival, I could see the camaraderie they had with the rest of the group, the joy and smiles from campers, and the feeling of community that settled over the entire bunch. I noticed that Medic Alert bracelets or dog tag necklaces adorned the majority of campers. It was a strange realization for me as I was among so many others that understood allergies. This was definitely a first for me!
The camp days begin with an engaging educational activity for children to learn more about their allergies. This is followed by traditional summer camp activities and play for the rest of the day. I witnessed the shrieks of joy from kids flying through the air on zip lines and lighthearted laughter from dance party moves in the swimming pool.
The counselors had either once been campers, had allergies, or were older siblings of campers with allergies. Instead of having each child focused on carrying around their own medicine, the counselors kept all camper medication insulated from the heat in rolling coolers. The medicines were all labeled with the campers names and stayed with the group. Campers packed their own lunches, following allergy-safe guidelines, and an allergy safe snack was provided daily.
While there, I had the pleasure of talking with, and listening to, parents share their allergy experiences and their child’s “favorite week of summer.” Not only do children make lasting friendships, but parents do as well. There were multiple groups of parents I spoke to that had been meeting at camp since it first began five years ago. They would spend time together while their kids were at camp for the day. Some would even meet up for ice cream at an allergy friendly stand, or dine together in the evenings. “It was the first time my son was with a group of kids who didn’t know him for his allergies. They saw him for who he was. A great soccer player,” a food allergy mom told me with misty-eyed appreciation. My own parents never knew others who had kids with allergies, but I am sure they would have appreciated sharing the challenges that life-threatening food allergies present.
Spending 36 hours immersed in the supportive food allergy community of Camp TAG, I recognized an invaluable opportunity for kids with food allergies. To have an occasion to spend the week playing and making friends without the worries of allergies is something I would have treasured as a child! Finding a community that truly understands what you and your child go through daily, both the ups and downs, is something as a child I would have held close to my heart and strongly benefited from. I found that Camp TAG is definitely a place to have that treasured experience!
Great post!