Note: Missouri PTA adopted a resolution about food allergies/anaphylaxis and schools at the 2008 convention. Units and councils are encouraged to share ideas about how parents and schools can work together to ensure that students with food allergies have a safe and productive learning environment. This success story is written by the parent of a child with severe food allergies.
By Jaxon's Mother
Ten years ago, food allergies had a very different meaning to me. I had heard of food allergies; who hadn’t? I’m sure I knew someone who knew someone else that broke out in a rash every time they ate strawberries. But what I didn’t know about food allergies was how this genetic disorder was about to change every day of the rest of my family’s life.
When my son Jaxon was thirteen months old, my mother gave him one bite of fish. While chewing, his face began to swell and his skin started turning red. My husband and I knew something was terribly wrong. Jaxon was eerily quiet and still. We jumped in the car and headed to the hospital. While on the phone with 911, Jaxon quit breathing. When we reached the hospital, Jaxon was unrecognizable. He looked as if someone poured acid on his entire body. He was given an epinephrine shot and steroids. I had no idea what food could do.
After taking our son to an allergist, we discovered through skin and blood testing that our son was allergic to milk, eggs, peanuts, tree nuts, corn, beef, wheat, pork, poultry, soy and of course…fish. As parents, we were overwhelmed, scared, and had no idea how to feed this child.
On our son’s second birthday, he was several inches taller and yet weighed the same as one year earlier. His ribs were protruding through his back and he was living off of a diet of fruits, vegetables, and rice milk. We began researching pediatric allergists that specialized in food. We discovered a renowned doctor practicing at the Arkansas Children’s Hospital in Little Rock.
More testing and food challenges revealed that Jaxon had outgrown six of his eleven food allergies. He began to grow and gain weight. He flourished under the constant care of our immediate family but play dates, babysitters, and restaurants put Jaxon at too much risk. Even contact with these foods, whether from the hands of another child or from playground equipment, could lead to anaphylaxis.
Sending Jaxon to kindergarten seemed like a death trap. He was leaving our protective bubble to spend the day with peanut butter sandwiches and milk spills under the care of strangers. We considered home schooling but Jaxon had already been socially isolated during his first six years of life. So we decided to “feel out” the staff at Century Elementary School in Nixa.
The summer before Jaxon was to begin school, my husband and I notified the school’s principal. A meeting was set up that included the principal, nurse, classroom teacher, counselor, and section 504 coordinator. We were pleasantly surprised by their compassion and their willingness to make changes that would allow Jaxon to stay safe at school. We had the same goal—to give Jaxon a safe learning environment.
As a group, we addressed snack milk, birthday party foods, lunch, field trips, hand washing, and an emergency medical plan. The school nurse trained the teachers on how to use an epinephrine auto-injector. My husband and I talked with the school staff and the parents of the other kindergarteners. We also spoke with the children in my son’s class to educate them on food allergies and how they could help keep Jaxon safe.
I attended school with Jaxon his first week of kindergarten. It gave my family and the school staff peace of mind. We all wanted to make sure the plan we worked hard to create would do its job. When Jaxon and I entered the lunchroom with all the other kindergarteners, six children in his class spilled their milk. Jaxon decided right then that he would be more comfortable eating somewhere else.
Since we didn’t want Jaxon to eat alone, his teacher arranged for a child bringing a “safe” lunch to dine with Jaxon in the foyer of the school. The kids have been very caring throughout the years and Jaxon has had at least one friend to eat with every day.
We remember walking Jaxon into the school on his very first day of kindergarten. We were so anxious. A day didn’t go by that whole year that we didn’t worry about him coming home alive. Now - four years later - we still worry about him when he’s not under our protective wings but we know we’re leaving him in good hands.
We consider Jaxon’s time at Century Elementary a complete success! If we could offer other families advice, we would tell them to:
1. Do your research: Google food allergies and 504 plans on the computer, talk with other parents of food allergic children, and gather resources from the Food Allergy and Anaphylaxis Network.
2. Make a plan: Meet with your child’s school before kindergarten and let them know what your child’s needs are and how they can help.
3. Educate: Ask to speak with your child’s classmates, explain their role in keeping your child safe, explain to parents how serious a food reaction can be, and work with your school’s nurse to make sure the staff is aware of the emergency plan.
Keeping Jaxon safe has truly been a team effort between the school staff, his fellow students, and us. We will be forever grateful!
Dr. Kevin Kopp, principal at Century Elementary shares that "Jaxon's parents have done a terrific job of keeping us informed of Jaxon's needs. It really takes a team effort where all of us are on the same page in an event of an emergency but also in being proactive with hand washing, safe snacks, and the "lunch buddy" system. Jaxon has really taught the students and faculty at Century how to handle tough situations...with courage and determination."
Jaxon's current classroom teacher Toni Hines reports that "we have ten students in our class that have signed up to be lunch buddies with Jaxon so he is able to eat with friends outside the lunchroom. These students think it is a privilege to eat with him; it makes them feel special. We actually have one little boy who brings a safe lunch everyday - just in case one of our lunch buddies forgets, which isn't too often; now that is a true friend! Anytime we do anything with food - reward parties, science experiments, etc., all the students are so willing to substitute the regular foods with ones Jaxon can eat. They even go out of their way to look out for him! For example, the entire fourth grade got first place for attendance one month and the prize was a popcorn party. Before I even had a chance to say anything, all the students in my class asked our assistant principal Ms. Jones what they could have instead because they knew that Jaxon was allergic to popcorn. She had forgotten about Jaxon's food allergies but she was so appreciative of the reminder and bought us healthy popsicles instead. The students always want Jaxon to feel included so they never complain about any food issues that come up. They want their friend to be able to do whatever they are doing!"