Food Allergy Mom

“Katie, go to bed already. It’s almost past midnight.” My husband used to say that to me amusedly the night before the first day of school.

We are both educators, so he understood that I was always a bundle of excitement and nerves at the beginning of the school year. I loved setting up my classroom and creating a warm environment of learning for my students.

Countless hours were spent researching back-to-school tips for my classroom and ways to help families feel welcomed. It was one of my favorite parts of starting off the year right.

Now that we are parents, especially food allergy parents, my planning ahead for helpful tips and information on school is now more rounded.

Having experienced both points of view, I want to combine my knowledge as an educator with my experience being a food allergy parent.

Back to school time can be so much fun! But we also want to feel secure in the knowledge that our kids are safely attending school.

That means that all parties involved must have a clear understanding of my child’s medical condition, medical needs, and safety plan.

Lauren is also an educator and has experience navigating these situations as well.

We combined our knowledge and came up with the top tips we think are vital for food allergy families to think about before starting a new school year.

We hope it is helpful to you!

1. Notify the District & School of Food Allergens

If your child is starting school for the first time or moving school districts, you will have to fill out enrollment paperwork for the school district you wish your child to attend.

Some school districts will allow you to fill out that enrollment paperwork online. Conversely, others might require you to come in-person to their district enrollment office or headquarters.

Either way, there will be a section in that paperwork that asks you to disclose health information about your child. It is usually titled “Health” and will ask you a series of questions.

Sometimes there is not a specific question asking about life-threatening allergies. Hence, you will need to write out clearly what your child’s allergens are, the fact that they need epinephrine, and that you want the school to follow an emergency care plan.

This is an important step because you want to have a document as evidence that you notified the school district of the seriousness of your child’s medical condition.

Sometimes, your child’s particular school, or even the classroom teacher, will have additional paperwork for you to fill out. Make sure your child’s food allergies and medical needs are also written on those documents as well.

Print a copy (or keep a digital copy) of all the paperwork that you filled out. It is also helpful to highlight the date that the school received the information from you.

You want all your bases covered on the paperwork side as much as you possibly can.

2. Ask For a Meeting with the Staff

It is vital that the classroom teacher and school nurse be notified about your child’s food allergies. Those two staff members will likely be the ones that have the most contact with your child.

However, who else will your child be around on a daily basis at their school? In a perfect world, every adult that sees your child needs to have a clear understanding of their medical needs and how to proceed in an emergency situation.

Before we had children of our own, my husband and I became foster care parents. One of the children that came to live with us was a young man with a food allergy and multiple other medical conditions that were life threatening.

As a result, we knew that we needed all the adults interacting with this child to be on the same page. We requested a meeting with the principal, homeroom teacher, specials teachers, secretaries, recess aides, lunchroom staff, paraprofessionals, clinic aide, school nurse, counselor, and school psychologist.

Yes, it was a lot to ask. And yes, it was a lot to coordinate. There were over 15 people in that meeting for just one child.

BUT IT NEEDED TO HAPPEN. Thankfully, the entire staff was incredible and more than happy to meet about the very serious needs of our foster son.

We made no apologies for requesting this of the staff, but also made it evident that we were respectful and would do whatever the staff needed us to do in order to support them.

It was a two way street of communication and teamwork to protect that precious child.

Your child is just as precious.

Do not worry for one moment that you are being difficult or “that parent” that asks too many questions.

Do it anyway.

3. Request New Training or Training Records

One important detail to obtain would be to ask how often the entire staff is trained on first aide protocols and epinephrine injectors.

Here are a few questions that you could consider asking:

• Are you able to tell me the date of the most recent first aid training your staff has completed?
• Are teachers trained on epinephrine injectors, or just nurses and clinic aides?
• What type of injectors did the staff train with? Note: You could come prepared with your specific type of injector and a training video. FARE is the trusted source of information about food allergies and you can check out their page about different types of injectors with specific training videos HERE.
• May I bring in our practice injector to show the staff that will be working with my child? I would like them to have an opportunity to practice with it.

Having worked in the school district for many years, educators should be receiving emergency health training at least once a year.

Alas, that is not always the case. If you are not satisfied with the training that the staff is receiving, that is a great opportunity to bring it to their attention and advocate for a new training on behalf of your child.

4. Implement A 504 Plan Or A Health Plan

What Is A Health Plan?

There are several differences between 504s and health plans. Your child’s specific needs, and your preference as a family, will determine which one is the best fit.

An Individualized Healthcare Plan (IHP) is typically overseen and initiated by a school nurse. The school can actually do this without the input of a parent, but I personally think it is vital that parents be involved in the creation of this plan.

It would mostly detail a concise list of actions for school personnel to follow in the event that a child had an allergic reaction. Many food allergy families have an IHP.

Therefore, if this is an option you would like to explore, start by meeting with the school nurse and making an official request.

A 504 Plan

Alternatively, other food allergy families request a 504 plan for their children. This plan is made available to all children in the public school setting under federal law who qualify.

If a child has a disability, or in this case, a serious food allergy, they would qualify for an individualized 504 plan.

Creating the 504 plan would require direct parent involvement and would go into detail on how to manage your child’s food allergies in a way that would still allow them to participate in school activities.

In order to start the process of getting your child on a 504, you would need to ask the school for the contact information of the 504 coordinator.

If they do not have a designated coordinator, then the responsibility falls on the principal to help you navigate this process.

This is required by law for public schools. Sadly, we have heard many stories from parents saying that their schools did not have a coordinator and wanted to brush the 504 request aside.

Respectfully, that is not an option.

A school MUST legally accommodate your family’s request to consider a 504 plan.

It is so important to have clear information as well as knowing your child’s rights.

FARE is the trusted source of information on food allergies and you can read their article about the 504 process HERE.

Both of these types of plans would outline the specific needs of your child as well as a clear plan of action to keep them safe.

5. Create a Plan for Substitute Teachers

Teachers get sick. Teachers have emergencies. They also have to go to meetings and conferences and trainings. There will be times that they will need a substitute.

You can work really hard to meet with all the staff members, plan safe foods, create health care action plans, only to find that your child will at some point end up with a stranger all day.

The issue with this is that the substitute will not be familiar with your child or their medical needs. That might be a very stressful situation for a food allergy parent to navigate.

Here are a few ideas:

• Work with your child’s teacher to create a substitute binder detailing your child’s needs, their health plan, anaphylaxis symptoms, and your contact information. Don’t forget to include a picture of your child.
• Ask your child’s teacher to have another grade level teacher agree to step in and help the substitute become familiar with your child’s binder of information before the children are brought in in the morning.
• Inquire whether or not the teacher could contact you beforehand, either via email/text/phone call so that you can make an attempt to meet with the substitute that morning before school.
• Lastly, if your child lines up outside the school before the day begins, (maybe on a flattop, field, or playground), try to lay eyes on the teacher that is picking up the students. That would be another way to quickly find out if your child has a substitute that day so you could further advocate for your child if needed.

6. Have a Plan for Snack & Lunch Time

It’s important to understand how the food situation will work at school.

Here are some questions to consider that can be helpful to ask when meeting with staff.

• Where is the food for breakfast/lunch consumed? Is it in the classroom? A designated lunch room?

• Are the kids sharing tables?

• Does the school have any restrictions on what can be brought into school? For example, some schools are nut free.
  
• What is your comfort level with a child actively eating your child’s allergens while sitting next to each other?
  
• Hand washing. Are the kids required to wash their hands after eating? Will your child have an opportunity to wash hands before eating?
  
• Is there an allergy table? Are other people sitting with those kids or are they eating alone?

Additionally, many classrooms do have a designated snack time during the day. It is typically scheduled in the afternoon or mid-morning.

Here are a few more options to think about discussing with the teacher:

• Is it possible for me to help you make a safe snack list of brands to send home to the other parents?
• How will I know what snacks are being fed to the class each day?
• Is it possible for me to provide the classroom snacks so that I know it is safe for my child? (This would depend solely on your comfort level and financial capability.)
• Would it be possible for me to be in charge of planning snacks? I could contact families and coordinate which snacks are safe and help schedule families to bring the snacks in. (Again, this would be extra work for you, but possibly much safer and a great way to raise awareness.)

7. Have a Plan for Class Celebrations

Think birthday parties, Halloween, Christmas, Valentine’s Day, etc.

How will you be notified of these events and when they are happening? Will you be able to send a safe alternative? Will kids wash their hands after the treat?

An important part of preparing for these is communication. This is something that can be included in a 504 plan that you need to be given a certain amount of notice prior to the celebration so you can provide a safe alternative.

Who notifies you, what the means of communication is, and how much notice you are given all should be included.

We have also seen some schools actually do celebrations with no food just as a school rule due to the number of students with different food allergies. They do different non-food activities instead and could potentially be another option for you to explore with your specific school.

8. Don’t Forget to Check Non-Food Items

Allergens can sometimes show up in surprising places. If at all possible, ask the teacher, or grade level team, what brands of school supplies they have asked for on their school’s supply list. If this has not yet been sent out, this is a great opportunity for you to share with them what brands are safe for your child.

For example, depending on your child’s allergen, supplies such as glue, finger paint, or even bean counters might contain food allergens.

Oddly enough, my daughter’s sesame allergen pops up in many types of paint. My son’s egg allergy is also sometimes found in different paints. We have to be very careful about what brands they use.

KidsWithFoodAllergies.org released a fantastic article about the potential for allergens to sneak their way into school supplies and crafts. They have a guide for both parents and educators. You can even give this resource to your child’s teacher and front office staff.

Check it out HERE.

Sometimes with crafts, people overlook potential allergens. For example, building a bird feeder is a common elementary school activity but often, bird seed contains nuts and it is often “glued” to the bird feeder with peanut butter.

I found that the cornstarch that was planned to be used for a project had a “may contains” warning for nuts, soy, and milk even though the staff was “allergy-aware.”

Clear communication on crafts and activities is very helpful and setting up a pathway for you and the teacher to communicate about this is important.

9. Create & Post a List of School Contacts

Another way to stay organized and to make sure that you are able to continue communicating well with the teacher is to create a list of staff members’ names, roles, and ways in which they can communicate with you.

For example:

Jane Doe (1st grade teacher) – prefers to communicate via text message (111)-222-333

John Doe (phycologist) – prefers to communicate over email phycologist@school.com

Once you create this list of all the staff members that you want to communicate with, save it on your phone. Perhaps print it to keep in an accessible place.

However, many schools have a no cell phone policy for teachers giving out their personal numbers.

But we would suggest still talking to the teacher about their comfort level in using their personal phone to communicate with you. It may be something that makes them uneasy, or it may not be a big deal to them at all.

If a teacher is unable to communicate via cell phone, can they agree to communicate with you via email with a same-day response? Or perhaps they use an online teaching tool as their preferred method of contact?

For instance, the online communication platform Class Dojo is one way many schools encourage their educators to stay in touch with families. Keeping track of these different ways to communicate will help you stay organized.

10. Make Friends with the Cafeteria Aides & Staff

Another great tip that we have heard many food allergy families report is to know the kitchen staff by name.

Many parents spend a great deal of time building a positive relationship with the staff in the kitchen in order to navigate the food situation as safely as possible.

Families that have their children eat a lunch prepared at school will ask the staff to notify them about food shortages or meal changes due to ingredients the day before so that the parents can prepare and plan.

I have even heard from a fellow educator that a student with food allergies was personally assigned a lunchroom aide because the kitchen staff advocated alongside the parents to keep that child safe.

Of course, the aide kept her eyes on the other students at that table too, but her main job was to keep a lookout for allergens as well as potential signs of an allergic reaction.

We have even heard of additional safety measures being written in as part of a child’s health plan or 504. One such example would be for the classroom teacher to personally walk a child to the cafeteria and watch the designated lunch aide take over.

Depending on the age of your child and their specific medical needs, these ideas might be great options.

11. Who Has the EpiPen and Who Will Administer it?

This is one of the most important pieces of information for your child’s safety plan at school.

Where will the EpiPen be stored and who will administer it if needed?

We have seen schools handle this differently, often depending on the age of the student and the availability of a school nurse.

The 3 most common scenarios we see are:

• EpiPen is kept in the nurse’s office.

• Epinephrine is kept in the classroom.

• EpiPen is self-carried by the student.

Nurse’s Office

If the school is requesting that the EpiPen be kept in the nurse’s office, here are some things to consider.

First, who has access to the nurse’s office? Is it locked? What happens if the nurse isn’t available? Oftentimes, nurses are shared between schools in a district and are not in the building all day, every day.

If that is the case, does the school employ a clinic aide that would be trained by the school nurse?

How quickly can they get the EpiPen? What happens when the kids are out on the field at recess and it’s at least an 8 minute walk back into the office?

Full honesty, if we were sitting together having coffee, and you asked me how I felt about this option, I would tell you that I have a lot of concerns with it. Personally, I feel there are too many variables that could go wrong with this scenario.

Epinephrine is a time-sensitive and life-saving medication. In an emergency, we don’t have time for people to figure out where the keys are, run to the office, find out that oh whoops the nurse isn’t here right now, etc.

I am not personally comfortable with this option and if you are able, I encourage you to request a different scenario.

Classroom

Storing the EpiPen in the classroom is another common option that we see. Oftentimes, if a school is concerned with a child carrying their own EpiPen (most common at the lower grade levels K-2), this is an option that we see.

This is also a potential solution if you personally are uncomfortable with your child’s safety in carrying their own EpiPen.

If the EpiPen will be stored in the classroom, where will it be? Is it in a locked cabinet? If so, who has the key and how accessible is it? If the kids switch rooms for gym, art, lunch, etc. who is responsible for bringing the EpiPen to and from the classroom so that it stays with the student?

How will this work when there is a substitute teacher?

Student Self-Carries

This is the scenario that is ideal when a child is developmentally ready for the responsibility. This way the EpiPen is always with the child.

We’ve heard from some moms that they love the Spibelts. They are designed for kids to discreetly carry their necessary medications, like epinephrine, under their clothes. This keeps it on their person so they don’t accidentally leave it somewhere.

Here’s the link! Not an affiliate link, we just think it’s an awesome idea.

Who Is Designated to Administer?

This is a critical piece of information to include in your care plan. Regardless of where the EpiPen is stored, WHO is responsible to actually administer it.

There should be more than one person designated to be responsible for this, not just one single person in the event that this person is absent. The purpose of clarifying is so that everyone is clear on the emergency protocol.

Be sure to have this clarified in your paperwork.

12. Plan Ahead for Field Trips

As soon as you are able, get the info from the teacher on any upcoming field trips for the year.

This way you can plan for:

• Whether or not you feel the need to chaperone

• Bag Lunch

• If you are uncomfortable with other kids eating your child’s allergens while your child is eating, what is the scenario for lunchtime or snack time on a field trip?

• The bus ride or transportation
  
• What is the field trip activity and are there any concerns with your child’s specific allergy needs? Example: Zoo and feeding the animals Baseball game and peanut shells, etc.

• Who has the EpiPen and who will administer it?

Many of these situations could be addressed in your child’s 504 plan for accommodations for field trips.

13. Role Play Scenarios

One way that we’ve found helpful to prepare our kids for different scenarios is to do role plays.

For example, practice with your child what to do if another kid tries to give them food. I pretend to be a fellow child (which my kids find hilarious). We practice what to say, and what to do if another child keeps insisting they would eat the food.

Other ideas for role plays could include:

• What to do if a teacher hands you the wrong food.

• What to do in a classroom birthday party.

• Steps to take if another child says something not nice about allergies.

• What to do if you’re not sure a food is safe.
  
• Practice reading labels.

I’ve noticed that this practice gives my kids confidence. We keep it fairly light-hearted, but it equips them with some ideas of what to say or do in different contexts which helps eliminate the need for them to try to figure this out quickly in the moment.

We also have 5 Family Food Rules that our kids know to help keep them safe. You can check it out here

You Are Not Being “That” Mom

We have both been there. There have been moments where we felt like we were annoying or “that” mom that everyone might be talking about.

But it’s not true for us, nor for you.

We are moms that are doing everything we can to create safe spaces for our kids where they feel included. Talking to what feels like hundreds of adults at school, staying up late to make safe food, spending hours researching safe products – that’s all US. We do that.

We work hard to keep our children safe and fight to advocate for them until they can do it themselves.

Our children will see our fierce love and confident actions on their behalf.

Every single day we are empowering our children with awareness, kindness, gentleness, thoughtfulness, and awesomeness to launch them successfully into a beautiful future.

We are in awe of you, sweet momma. Your child will benefit from all that you do to create a strong foundation for them. And one day, the world will stand in awe of your child.

-Katie and Lauren

What to Read Next: How To Talk To Kids About Food Allergies