I sat nervously at the conference table, introducing myself to a room of new faces, new faces that I sincerely hoped would help to make accommodations for my daughter when she entered kindergarten in the next year. I had reason to be nervous—we had never found a preschool willing to accommodate her FPIES management needs, ultimately ending up homeschooling her for preschool after a disastrous two months spent at the only local preschool willing to admit her. Everyone at this conference table seemed friendly enough while I explained about FPIES and the accommodations suggested by her medical team for a safe school year. The response? “Well, kindergarten isn’t required in our state. Maybe keep her home and she’ll outgrow it by first grade?”
My stomach dropped. Yes, she might outgrow everything in a year! But I knew, based on how her symptoms were at the time, that she also might not. So I proposed another meeting. Which led to even more discussions. Over the course of that year, we met four more times. The final meeting was to prepare everyone for my daughter to attend kindergarten, right on time.
Why did I start talking to the school so far in advance? Educating your child’s new school about FPIES management requires time for all involved parties to communicate—asking questions and sharing information. Sometimes, it takes time for staff to get comfortable and confident with the idea of managing FPIES in the classroom—they may not have had similar experiences before. Ideally, offering necessary information before summer break can help teachers and administrators plan and prepare for the upcoming fall classes.
Let’s explore some ways you can help your child’s school plan for a successful year ahead!
First, become familiar with your school’s (or your district’s) policies regarding food allergies. Make notes about what policies would be beneficial to FPIES management in the classroom, as well as notes about what management strategies would not be covered in the existing policies. An example of a district policy may be that all schools are nut-free, or that classroom parties will not involve any food.
Second, introduce yourself to important people at your child’s new school—essentially, administrators, teachers, paraprofessionals, school nurses, and food service management. Be sure to arrange a time for introductions that is convenient to everyone involved— school professionals often have busy schedules and you want to be sure to have uninterrupted time to talk. Start with a phone call to the principal or lead administrator, make a brief introduction, and ask if you can set up a meeting to share necessary information with the aforementioned school staff. Emphasize that you greatly respect their time, but also stress the importance of this meeting not only for the safety of your child, but to help the staff to be better prepared as well.
Third, when at the meeting(s), come prepared. If your child is entering kindergarten or a higher grade, you may want to request that a 504 plan be developed, a special plan that provides accommodations specific to the FPIES diagnosis so that your child can fully access their education (you can use our planning worksheet (PDF) as a guide to get started!). Be sure to have notes regarding your accommodation requests (your child’s doctor can be a great help brainstorming requests!) so that you can stay on topic and address all aspects of FPIES management in the classroom. Bring information to educate the staff— general FPIES information (be sure to include links they can visit to get more information), your child’s lists of safe foods and known unsafe foods, and details for how to prevent, identify and respond to an FPIES reaction. A written emergency plan can also be a helpful item to provide, as the school may use it as a foundation to build your child’s school-based emergency plan. Throughout the meeting, be sure to emphasize your desire for a team approach and your willingness to work together.
Fourth, establish a way to stay in contact with your school partners, particularly your child’s teacher-to-be. Offer one or two ways for them to reach out to you and request a way to stay in touch with the teacher-to-be, school administrator, and school nurse. Keeping the lines of communication open can begin to establish a rapport between yourself and your child’s future school.
Finally, here are some sample discussion topics to bring up at your meeting. Of course, all kids are unique, and all schools are different, so be open to adding other topics as needed.
- For the administrator: Discuss FPIES management during bus transportation, field trips, school wide events, and the steps that will be taken during emergencies, whether FPIES related or otherwise (such as a potential lockdown that extends past the school day)
- For the teacher(s) and paraprofessionals: Discuss hand washing routines, art supplies to be used, the use of manipulatives for learning (i.e. avoiding using food or candy for counting/math), class parties, class projects, and even science experiments. Discuss the preparations that will be made to help a substitute teacher understand the FPIES management protocols.
- For the school nurse: Discuss storage of elemental formula or other medical supplies (if necessary), storage of safe medications (i.e. fever reducers free of your child’s allergens), emergency planning, and staff education about FPIES
- For the food service staff: Discuss any needs related to school meals—will your child need to receive meals at/from the school? If so, what foods/ brands are safe for them to consume and are there any needs related to food preparation or serving methods? Will your child need to sit at a “food allergy friendly” table and/or have the table and chair surfaces cleaned in a specific way?
Kindergarten ended up being an AMAZING year for my daughter! Yes, there were some bumps along the road, but the advance preparation not only helped everyone to be on the same page, but it also helped to establish strong relationships with the school community for years to come. I hope our story can help other families and schools ease into safe and successful school years as well!
For additional support or questions, do not hesitate to reach out and connect with us at contact@thefpiesfoundation.org, and be sure to peruse our website for a wide array of school resources for families and teachers!
This blog was written by FPIES Foundation co-director and FPIES mom of two, Amanda LeFew, MT-BC.
