By Chris Croll
This interview with the mother of a child with severe food allergies is one in a series that profiles children who have conditions, diagnoses or temperaments that require specialized support from parents, teachers, coaches, therapists, friends, family members and other influential people in their lives. The goal of these profiles is to elicit greater empathy from the community for these “high-needs” children and their families.
CROLL: What are severe food allergies?
Anna: My 9-year-old daughter is allergic to milk, eggs, nuts, fish, food dyes and some environmental allergens, including stinging insects. She is anaphylactic, meaning any reaction can potentially be fatal. She is “contact reactive” (meaning to the touch) and she reacts to traces of allergens and to cross contamination.
So, for example, if a classmate had a donut containing milk for breakfast and he comes to school without washing his hands and then touches a chair in the classroom, if my daughter touches that chair she will at least break out in hives. If she then touches her mouth, eyes or nose with the food traces on her hands, she will have an anaphylactic reaction which could kill her if she does not receive immediate medical treatment.
On 10 different occasions already in her young life, my daughter has been rushed to the emergency room in an ambulance to be treated for anaphylactic shock. Each time she knew she could die. It was very traumatic for her.
CROLL: When did you realize this was an issue with your daughter?
Anna: We knew within a few weeks of her birth that she was having allergic reactions to the foods in my breast milk. Her first anaphylactic shock was at 9 weeks old to hypoallergenic infant formula.
CROLL: How does her exceptionalities impact her ability to be successful academically and socially?
Anna: My daughter misses a lot of school because of allergic reactions. She sits alone every day in the allergy area in the cafeteria. She can’t even sit with the ‘no nut’ students because they often have dairy or egg in their lunches. Playdates can only be done at our house for safety reasons. She is very socially isolated because of her condition. My daughter has only attended two birthday parties in her life – she isn’t invited to them because it’s too complicated for the host to accommodate her needs.
Knowing she could die at any moment from mere traces of food, my daughter experiences very high stress and anxiety. She has PTSD from all the times we had to hold her down against her will, stab her with the Epi-pen and rush her to the hospital.
CROLL: What are some of the unique parenting challenges you face?
Anna: I make almost all our family’s food from scratch. I often have to call medication manufacturers to find out what ingredients they use that are not disclosed on the labels.
I must fight with literally everybody (including family) to keep my child safe. It’s exhausting, and I never get a break because nobody else wants the responsibility of taking care of her. My daughter can never be left alone – she must always be supervised in case she has a reaction. Also, allergy kids are very expensive. Not only do we meet our out of pocket expenses every year but also many treatments are not covered by insurance.
If the whole family is not vigilant 100% all the time about what we eat and how we eat and where we eat, and what we touch after eating, we could inadvertently kill my daughter.
CROLL: What are some of the challenges your child faces from being different?
Anna: My daughter is excluded constantly. If there are events at school run by the PTA, they don’t have to accommodate her special needs so they often un-invite her to carnivals and other parties that all the other children are invited to attend.
Even common school supplies like chalk (contains dairy), paint (contains egg) and Play-Doh (contains wheat) can cause an anaphylactic reaction.
People have started to bully my daughter because of her allergies. Last year, one boy tried to rub Butter Fingers on her arm to, “see what would happen.” Even adults scoff at the idea that her condition is life or death.
CROLL: What type of education environment does your child attend?
Anna: Public school. My daughter has a 504 for her food allergies but the 504 is not always followed.
CROLL: How do you think your child is perceived by others?
Anna: By children and other parents, she is perceived as an inconvenience. By the school, she is perceived as a liability.
CROLL: What would you like others to understand about your child and others like her?
Anna: I want people to remember that my daughter did not choose to have these allergies. This condition needs to be taken seriously. Support people with allergies by asking how you can help them to stay safe. And, please, be inclusive. It breaks my heart to see my daughter so sad that she is always excluded from fun childhood activities like birthday parties and school events.
Chris Croll is a parenting consultant specializing in educating and raising gifted and twice-exceptional children. She leads the National Center for Gifted Services (NationalCenterforGiftedServices.com) and the nonprofit Loudoun County Parents of Gifted Students (LoCoPOGS.org).