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School Planning Key for Allergic Kids (A Personal Story)
By Julie L.
Autumn was turning four, and it was time for her to start pre-kindergarten.
She had successfully attended a private morning program for two years, but pre-k would be in public school. The public school system offered a full-day program, from 7:40 a.m. to 2:15 p.m. This meant eating at school - and not just once, but three times a day. The school provided breakfast, lunch and an afternoon snack.
This was a forbidding challenge, because Autumn is anaphylactic to peanuts, tree nuts, milk, white potatoes and allergic to eggs. She is contact reactive to all of her allergens.
The nurse at her new school told me the school had no children with life threatening food allergies that she was aware of.
We knew we had a big project ahead of us to keep her safe.
The first thing we did was to gather as much information as we could, so we would be prepared for anything that came our way. We thoroughly researched the laws and asked for a copy of the district's 504 policy so we would know the district's appeal process ahead of time.
The Internet was an invaluable resource. We were able to locate a copy of the Massachusetts Department of Education Guidelines for Managing Life Threatening Food Allergies in Schools. It is an unprecedented document on how to handle food allergies in schools.
We also printed a copy of the , Mystic Valley Regional Charter school case which involved a school unwilling to provide a peanut/nut free classroom. We ordered The Food Allergy and Anaphylaxis Network's (FAAN) Preschool Guide to Food Allergies and any other materials that we thought might be helpful.
We spent close to a year just researching information and talking to other parents on the Internet about what had worked and not worked for them.
One of the first things we noticed was that this process needed to be handled as a professional business transaction. It may sound cold, but the schools handle it that way and do not respond well to emotional appeals and over reactive parents. We used the word "Teflon" a lot. Our motto was, "Keep the feelings hidden under a layer of Teflon and remain professional at all cost at all times." There were moments that this was difficult for me, but that is when I had my husband return the phone call or handle the meeting. I saved the crocodile tears for when we arrived home.
It was also important that we communicated with the school as a family unit. My husband was actively involved in the process and attended most meetings with me. We tag-teamed responsibilities. He was much better at controlling his emotions and handling the situation with more clarity. I am the detailed organizer and social butterfly. We each used our strengths to successfully negotiate with the school.
The next thing we did was to think positive, but prepare for the worst. Before we even spoke with the school we had a completely organized system of communication that could be used if a legal battle occurred.
In this process, we learned a lot from the book Wrightslaw: From Emotions to Advocacy: The Special Education Survival Guide by Pam and Pete Wright, to organize our communications with the school system. We started by creating a contact log that would record the name, date, time and topic of conversation each time we spoke with anyone from the school. We then had a journal that we would make references to and record any specifics of the meetings. It was very important to keep all emotional content out of the written communication and just record facts. We then created a master document binder to hold all written communication and documents. Every conversation I had with anyone from the school regarding food allergies was followed up with a letter summarizing the communication and any important points. I always hand delivered the letter and on my copy of the letter I noted the time and person I delivered it to. We made sure that all the ducks were in a row and we had proof of all our communications. This also presented a professional image to the school which helped them take us seriously.
In January, we were finally ready for the negotiations to begin. Our first contact was the assistant superintendent of the school system. She was the person in charge of the preschool program. My husband was not able to attend the first meeting because of work, so I asked an impartial acquaintance to attend with me as a witness to the conversation. Sometimes, you hear things differently than they were actually meant and it is good to have another person's perspective on the meeting. I provided the assistant superintendent with FAAN's Preschool Guide to Food Allergies, the Massachusetts document and other materials that I thought might help. I explained our situation, and instead of making demands, I said that we heard that she loved and cared for children and could she help us in our plight. It worked! She contacted the principal and set up a meeting with all the necessary people.
Things were not all roses in the beginning. The district did not move quickly. We contacted them in January and they did not really get serious until the last moment. That was frustrating, but we kept our cool and kept following up. We tried to avoid making demands and instead offered several options for each situation. We basically provided a list of all the problem areas with two to three ways each one could be handled safely. We then let them make the decision as to which option would work best for their school. It is all about convincing them that they are making the right decision to keep your child safe.
The first positive result was that the school agreed to send the Lead District nurse and the individual school nurse to the FAAN conference. That was a big surprise to us. When I asked, I expected a "No" response. The conference really helped the nurses understand the severity of food allergies and properly instruct the administration. The school nurse has been a huge advocate for our family. I make sure that we send her flowers on school nurse appreciation day and thank her regularly for caring about our child.
The end results of this two year project were wonderful! Negotiations went so well that we felt we did not need a 504 plan and felt comfortable with a written Individualized Health Plan. The school agreed to the teacher carrying the medicine bag and they purchased walkie-talkies to go with it. An Emergency Action Plan was created, and the nurse contacted the local Emergency Medical Services (EMS) department. All of the teachers and staff involved with our daughter attended training and had to sign a training sheet stating they had received the training. The training is repeated every six month on an individual basis.
Autumn's classroom is free of all unsafe foods. The snack is provided by the preschool, but they order food that they know is safe. I then double check the labels every Friday. The cafeteria manager is very important in this process. Autumn has a designated seat in the cafeteria and the table is wiped down for her. She has five colorful place mats that our friend made just for her and she eats her safe lunch from home on them. The school has removed the seat from the stool beside her so that no one sits next to her. She sits on the end and someone sits across from her so she is not isolated. All students wash their hands immediately after lunch in the neighboring bathroom. Students also wash their hands as they enter the room in the morning. There is a poster in the teacher's lounge, the school office and outside the classroom door explaining about the food allergies.
We did have some differing opinions on how to handle birthday parties. The teacher did not agree to any of my suggestions. When that happened, I contacted the school nurse and asked if she could help us reach a compromise. The nurse spoke with the principal, and he came up with an excellent solution. We agreed that unsafe food would be allowed at birthday parties; however the parties would not be held in the classroom, but would be held in the cafeteria or hallway. Autumn sits in her usual seat and eats a safe snack provided from home. Sometimes the teacher chooses for the students to have a picnic on blankets outside the classroom. I was thrilled with that compromise.
This process was definitely not easy or stress free. They key was that we started early so that we had time to step away and take a break when things became overwhelming. We continue to document and log all communication and communicate on a very professional level. We are always prepared for a possible difficulty, but still continually praise the school and individual personnel for their efforts. In summary:
1) Start very early and do thorough and complete research.
2) Document and organize your communication with the school system.
3) Work as a team with your spouse and use each other's strengths in the negotiations.
4) Although it is difficult, separate your emotions from the process. Treat it like a business negotiation.
5) Do not make demands, but instead offer 2-3 options for them to consider.
6) Do not attend meetings alone.
Julie is a stay at home mom living in South Carolina with her husband and three daughters.
This story first appeared in the Fall, 2006 edition of Support Net. Links updated May 2013.