A Checklist for Back to School with a Feeding Tube

It’s that time of year again! Whether you’re noticing fresh, new notebooks and backpacks popping up all over the internet or a colorful line-up of this fall’s latest clothes at the mall, it’s clear that back to school is just around the corner. While there’s excitement in the air for the school year to begin, there can also be some concern. Going to school can be scary; going to school with a feeding tube can be even scarier, especially if it’s the first time for your child.

Prepare Important Documentation.
Most children with feeding tubes will need an IEP (Individualized Education Plan), IHP (Individual Health Plan) or 504 Plan for school. These different types of plans, which can vary from state to state and even district to district, can help to assure that your child receives the proper education while still having their medical needs met. Some of the things that might be included in the plans are: who will handle the feedings, what happens if the tube comes out, and how formulas will be stored during the day. You can learn more about the differences of these plans and which ones best serve your child by visiting the Oley Foundation.

Stock Up on Supplies.
Find out from your school about having an emergency kit and extra supplies on hand such as tape, formula, medicines, and tube-feeding "parts" and syringes. You might also consider a spare shirt or two in case of leaks or spills. Label everything with your child’s name and your contact number. For the emergency kit, include your own instruction card that you can laminate to keep it sturdy and dry.

Know Your School’s Policies.
Find out what your school’s district policies are on all kinds of scenarios, from what happens if there’s an accidental feeding tube removal during school hours to where feedings can occur. Ask detailed questions in advance, seek specifics and document your findings. For example, will feedings occur in the cafeteria when all the other children are having lunch, or will your child need to head over to the nurse’s office? Knowing these important details in advance can help you to circumvent the unexpected and better prepare your child for his or her day.

Partner with Teachers and Staff
You’re probably used to working with your healthcare team to secure best practices for your child’s well-being. By working with and educating teachers and staff, your "school-care team" will better understand how tube feeding works and how they can support your child. Request a meeting with the school nurse. He or she can be a great resource and point person for the other educators who interface with your child each day. You might even want to contact the bus company to gather information on any specific needs while transporting to school.

Educate Your Child’s Classmates
Kids are curious, and they often blurt out exactly what they’re thinking, which can sometimes be hurtful. While close friends may already be comfortable with your child’s feeding tube, there will be classmates that may not have had much exposure yet. Feeding Tube Awareness offers helpful tools for making presentations in the classroom, including a letter of request to give the presentation. How empowering would it be for your child to have you come to class to speak about how tube feeding is part of your daily lives? You may also consider sending a "here’s what your kids might be asking" email to share with other parents, or even ask the teachers if you can donate a "tubie" stuffed animal to keep in the classroom. Your child can teach the other children about tube feeding through practice and play.