I soon looked at this role similar to that of a director. It was my job to ensure the environment was safe and that everyone was trained so that the stage was set for Ryan to enter and have a “normal” experience like all children who were attending the event.
The role of advocacy changes and morphs with “ages and stages”. At a very young age you are teaching that there is no sharing of food and that everyone must wash their hands. As they get older they are able to label read, inquire about ingredients and know they need to have an Epi-pen nearby. I would say by third grade Ryan knew very well what he could have, not have and how to ask questions and self-advocate. I say this remembering that he did as good of a job as could be expected by a nine year old.
My children are now entering their teens. This is a whole new territory of independence. While I feel they do a good job, understand the severity of their allergies, cross-contamination and the rule of no eating if no epi is with them, I still have fear as they are exposed to new social settings, opportunities, and the feeling that they are invincible. I read more stories of fatalities at this age. Often they have been doing things the same way, eating the same foods, becoming comfortable, doing the things teens do and letting their guard down. I’m sure there will be stories to share and welcome those of others as we enter this chapter.
Know your rights:
Food Allergies fall under the category of the “Americans with Disabilities Act” and the requirements under Section 504 of The Rehabilitation act of 1973. Section 504 supports free and appropriate public education for students with disabilities. Having a 504 is a GOOD thing, as it clarifies that your child is protected by federal laws that prohibit discrimination against students with “hidden Disabilities” like anaphylaxis. This is about safety and civil rights!
While some schools might try to discourage a 504 and say it is not necessary I strongly encourage you to put one in place. Do not feel you need to use a standard form that might be provided, make sure you customize it to meet the safety requirements for your child. This is a good time to receive the supporting medical documents and letters from your child’s pediatrician and or allergist.
US Department of Education
A parent’s guide to Section 504 in public schools
FARE 504 information
PLEASE DO NOT THINK THAT HAVING A 504 IN PLACE WILL PROVIDE A SAFE ENVIRONMENT. While I do feel strongly that you have one, often times the document is reviewed prior to the start of each year and it will be your job to work with the teachers ongoing throughout the year to ensure the safety procedures put in place are followed through in the classroom. The 504 provides an agreement between you and the school to solidify the accommodations that will be made, i.e where Epi-pens will be kept, who will administer them, how food will be handled in the classroom etc… Our school paid no attention to our 504. It was very important that I kept in close communication with the teachers to understand the birthdays of each student, the class parties and project where foods were going to be brought in. What the 504 did provide was grounds for us to stand on when the school was in breach of the agreement.
A few things I am still working on:
Depending on your school and your community making the appropriate changes to protect your child and provide a safe environment might not be easy. A friend of mine sent the below. If you plan to make significant policy changes that will impact what foods others are able to bring into the school I recommend that you identify as many parents both with and without food allergies that will support you on this mission.
1 person = A fruitcake (or in our case a "nut" job)
2 people = A fruitcake and a friend
3 people = Troublemakers
5 people = “Let’s have a meeting”
10 people = “We’d better listen”
25 people = “Our dear friends”
50 people = A powerful organization” (that can work together to provide a safe environment for children with food allergies!
As you start to speak with individuals about your child's allergy, When Ryan’no idea how all-encompassing that role was going to be. For every playdate, babysitter, camp, sporting activity, birthday party and school there was an educational period that needed to take place prior to being able to leave him. What to eat, what others were eating, how to identify a reaction, how to administer the epi-pen…
Food Allergy Resources
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Food Allergy Resources