As you prepare for another school year, communication is key. You must communicate well with the school. You must also communicate well with your child.
The first step is to notify the school, in writing, of your child’s diagnosis. In your letter or email to the school, I recommend that you share an Emergency Care Plan completed by your allergist, ask what documents and forms the school needs from you and your child’s medical care team, and request a meeting to discuss the information in person. This will help everyone move forward with creating an accommodation plan once eligibility has been approved. It is also helpful if your allergist is willing to write a letter regarding your child’s diagnosis and include what steps are necessary to keep your child safe at school (i.e. must have epinephrine accessible at all times, allergen free classroom, etc.).
Next, work with your child’s team at school to create an appropriate written plan for accommodations. I recommend a 504 plan since it is a legally binding document that protects your child’s rights at school. Here is a link to one of my favorite blogs about 504 plans. I also have additional links with 504 information at the end.
What accommodations are appropriate? I advise starting with the CDC’s Guidelines. You can access the full document here (it’s quite long). Here is a 2-page list of accommodations that FARE created of the CDC recommendations. I find this list to be particularly helpful since it breaks it down into different locations in the school setting – classroom, cafeteria, transportation, etc.
Ask your child’s teacher to walk you through the day at school. Where will your child encounter food? Who is in charge of medication? Other than the teacher, who is responsible for your child’s care throughout the school day? You should pay special attention to transition times between activities/classrooms and schedule changes.
Items to pay particular attention to:
Location of epinephrine- Keep epinephrine with your child. It needs to be accessible at all times. If it is in a box in an office, how accessible is it? Minutes make a difference when treating anaphylaxis. Also, with every accommodation made, you need to remember what you are teaching your child about self-management. If you allow your child’s epinephrine auto-injector to be stored in the school office, how is that teaching your child to know he or she must always have it on hand? When it comes time for them to self-carry, will they understand the importance of keeping it with him or her? We have to be sure we aren’t sending our kids mixed messages.
Staff training- Your child needs to always be in the care of someone that is trained and willing to treat him or her with epinephrine. (This also applies to transportation to and from school as well as transportation during field trips). Your child’s Emergency Care Plan needs to be shared with the school’s care team. The ECP will provide them with concrete instructions on when and how to treat. Reactions are not a time for school staff to be left making a judgment call. Providing these steps in the ECP will save important time during a reaction.
Who is providing food?
Just like every other child at school, your child can eat in the cafeteria. School lunches are overseen by the USDA, and therefore public schools must make dietary accommodations.
If you choose to send your child’s lunch, one recommendation I have is to use an easy open lunch box that your child won’t need much help with. The less hands helping with lunch, the less likely a helper could contaminate your child’s lunch. My daughter uses a PlanetBox and it works wonderfully.
When it comes to lunch seating it’s important to have good supervision and make sure that your child is not isolated. Strategies to reduce risk need to be addressed. This will very much depend on your child’s allergens. Read more about cafeteria seating here.
You need to decide if you will allow your child to eat snacks provided by others (with the teacher being responsible for reading labels and knowing what brands are safe) or if you will be the only person providing food for your child.
Personally, my consent is required on everything before it can be fed to my child. I feel that it’s important that teachers not be put in a position to make medical decisions. They need clear, specific instructions. For example, a teacher should not have to decide what is or isn’t considered baked egg or distinguish between different varieties of nuts.
Parties & Celebrations
You need to come up with a plan that keeps your child safe AND included. You can read my thoughts on food in the classroom here.
Classrooms are for learning. Cafeterias are for eating. Your child is not being given every opportunity for success if they have anxiety and stress about the food that is ground into the carpet under the desk in front of them. This is a distraction from their education. Advocate for your child to have a supportive learning environment and have an allergen free classroom. (This is also recommended by the CDC).
Other items to be sure you address:
Are all substitutes trained? How will they be notified of your child’s specific accommodations? Will a TA that is properly trained on your child’s Emergency Care Plan be present at all times?
If you can’t attend, your child needs to be with a staff member that is trained to care for them (not a chaperoning parent who isn’t properly trained). Also, request that all field trips are assessed for safety and inclusion beforehand, and adjustments made, if necessary.
Does your child’s school sell food for a fundraiser? Your child should be exempt from this. Let me be blunt - it’s incredibly inappropriate for the school (or sports team, church, etc.) to ask a child to sell something that could kill them. If your family does choose to participate in such a fundraiser, talk with the school administration to ensure that the prize incentives are appropriate for your child.
Hand sanitizer does NOT remove food protein. Hands need to be washed or wiped with a wet wipe. Ideally classmates will do this upon entering the classroom in the morning and after lunch.
Your child’s accommodation plan needs to carry over to any other school activity. Your child has equal right to also be included in these activities, just like in the classroom.
Water fountains can have lots of food residue from the many hands and mouths that come in contact with them everyday. I recommend that your child carry his or her own water bottle and not risk the possible contact from the water fountain.
What if your child had to stay at school due to an emergency? (Think unexpected ice storm). What if your child dropped their lunch box and all the contents spilled on the floor? Is there enough safe food to sustain your child for a day? I recommend keeping a box of shelf stable food in the nurse’s office or your child’s classroom for these emergencies.
Communicating with your child
A child managing food allergies needs “food rules” or “safety rules”. Here are some suggestions:
- Only eat food that is provided by parents or parents have specifically told the child that the food is approved. No food sharing!
- Never touch anyone else’s food, cup or lunchbox.
- Don’t let anyone touch your food. If they do, don’t eat it and tell an adult.
- If you don’t feel well, speak up immediately. Tell an adult “please help me, I think I’m having a reaction”.
Children, especially young ones, put their hands and other objects in their mouths. This can create additional opportunity for accidental ingestion. Work with your child on why it’s important to keep hands out of mouths and the importance of hand washing. Also, ask your child about school - specifically lunch, snack or social times. This will give them the opportunity to talk about anything that may not be going well or is upsetting to them.
Include your child as an active part of his or her plan at school. Explain that your child’s decisions and behaviors are a part of the prevention plan, but that others are also working to protect him or her. Tell your child what accommodations are in place to promote a safe environment. Show your child that his or her teacher is prepared with epinephrine, if needed.
Remember, open communication is key for keeping your child safe and included at school. Do your best to create a relationship of mutual respect with your child’s team at school. Say thank you when things go well and when accommodations are made for your child. When problems arise, document the issues and take them to the appropriate person to ensure the issue is corrected. Don’t hesitate to ask questions or speak up if you aren’t comfortable with something.
Sending a child with food allergies to school is one of the hardest things we do as parents. I also feel that it is one of the best things we can do for them. We must teach our children self-management skills. We also must teach them that the world isn’t allergy free. One day, they will be adults navigating an allergen-filled world without us planning their every move (and meal). We need to begin building their confidence to manage the diagnosis by empowering them in age appropriate ways.
With proper prevention and preparedness, our children are free to learn, grow and experience everything that life (and school) has to offer.
Links to additional information:
FAACT's Civil Rights Advocacy Resource Center
Thriving with Food Allergies, How to Obtain a 504 Plan
Questions & Answers on the ADA Amendments Act of 2008 for Students with Disabilities
The Civil Rights of Students with Hidden Disabilities Under Section 504 of the Rehabilitation Act of 1973
Guidelines for Managing Life-Threatening Food Allergies in Tennessee Schools