The day has finally arrived: It’s time to register your child with food allergies for kindergarten! Typical parents experience a plethora of emotions during this time including a dose of anxiety; they worry whether their children will adjust quickly, make new friends easily and like their teacher. As a parent of a child with severe food allergies you experience all these worries too, but your anxiety runs exponentially deeper: Will my child be safe? Will she suffer an episode of anaphylaxis as a result of accidental contact with an allergen? Will the staff know how to use her Epi-pen in an emergency? Will her life be threatened?
The thought of sending your child to school without you by her side to protect her may seem like you are sending her into a field of landmines: School lunch? Landmine. Snack time? Landmine. Holiday party? Landmine at the edge of a cliff. If you’re lucky, your child’s school will have policies in place to protect her, but more often than not, your school may have inadequate policies or none at all. You may face a frustrating road ahead, but rest assured, it is possible to make the changes necessary to protect your child and others with food allergies.
Without a doubt, the time leading up to my eldest daughter attending kindergarten and her first few months were among the most gut-wrenching, emotional periods in my life. My hope is that in writing this article and providing you some insights learned through my experiences, I can help you make sure your child’s school is ready to deal with her special needs. Note: This article does not discuss the virtues of a 504 plan or IHCP (IEP) which we advocate for every child with food allergy. For a great webinar by Laurel Francoeur comparing both, click here.
So how to begin? Before you can start the process of engaging officials at the school, you must first get your child to appear on their radar. That means registering your child, a process that generally starts early in the calendar year, often before or during March. You’ll want to do this early to give you as much time as possible to prepare.
Understand How the School Operates
Before you jump in and begin advocating for your child, it’s a good thing to understand what schools are and how they operate. A school is similar to a governmental agency in three important ways: it has a rigid hierarchy, it has rules that are the product of a long standing process, and it has its own politics. Your success will be directly related to how well you practice diplomacy and can navigate the bureaucracy. Always remember to treat those you engage with respect, understand how the rules are formulated and put in place, and keep an eye out for who’s really in charge for any given issue.
Build Your Child’s Support Team
There are many people who will need to be part of your child’s “support team”, including her teacher, principal, lunch room supervisor and school superintendent; but the captain of that team at the forefront of keeping your child safe is the school nurse. She is your child’s ultimate champion and one that you need to build a solid, lasting rapport with. In many schools, this is who you will initially meet with to register your child; if not, meet with her shortly afterward as she will be partnering with your child’s teachers to implement classroom policies, working with you and your child’s doctor in formulating an emergency action plan, and educating all involved of the classroom rules regarding food. The relationship you forge with her is critical and will last for years to come, so don’t be afraid to speak your mind and share the concerns that convey your conviction to your child’s safety while maintaining a good rapport.
It is important to keep in mind that, although the nurse’s role is critical, she is probably not the ultimate decision maker with the authority to create or change policy. Your principal and superintendent have the final say, so you will need to spend time establishing relationships with them as well. Be sure to let them know that you’re meeting with the school nurse and working closely with her, but that you consider them to be equally instrumental to your child’s safety. Don’t be afraid to let your concern show; convey a sense that your child has special needs and her well being hangs in the balance. Let them know that you appreciate their personal attention to your child’s circumstances and infer diplomatically that you will hold them responsible if something should go wrong. If they come away remembering your name and that of your child, you’ve set the right tone.
There’s still an important member to identify: your child’s teacher. The teacher will be with your child most of the time and is ultimately responsible for your child’s welfare during school hours. She is the classroom enforcer, the last stand at keeping allergens away from your child.
In many schools, teacher assignments are not announced until the summer but are decided much earlier. While you are meeting with the school principal, impress upon her your need to meet with with your child’s teacher as early as possible to discuss your concerns and your child’s specific requirements. Request advanced notification, keeping in mind that the last thing your principal wants is for you to shake things up with the other parents by having the jump on teacher assignments; assure her that you will be absolutely discreet.
Meet your child’s teacher in the spring, if possible, and again in the fall just before your child begins school, to refresh her memory regarding your child’s special needs.
Educate the Team
How do you ensure your child’s support team is well versed in matters of food allergies and the gravity of your child’s needs? Education and persistence! Don’t assume anyone on the team is well informed on the topic of food allergies as they may not have had much experience and formal training, and that includes the teacher, principal, superintendent and school nurse. Assert yourself and don’t be afraid to tell them what they may already know; if they learn something new, you have advanced their knowledge to help keep your child safe. In any event, you will present yourself as well educated on the subject and ready to advocate for your child.
The first and most important thing to impress upon your team is that reactions to food allergies are not simple stuffy nose and itchy rash affairs; they may lead to anaphylaxis and death. Although it may be difficult, take the opportunity to relay your experiences of bad reactions or close calls with anaphylaxis your child has had in the past. I have shed many tears during some of these meetings but feel it is important to personalize my child and her experiences so that they resonate with her team. Don’t be afraid to site recent news articles about the horrible consequences of anaphylaxis in schools like those of Ammaria Johnson and Max Roseland. Print copies and take them along.
Also make sure they clearly understand that anaphylaxis does not require ingestion of an allergen, but that simple contact (such as might occur when a child shares scissors or a pencil sharpener and then rubs his eyes) is enough to trigger onset of a reaction. Impress upon them that classroom policies are imperative and all that stand between another child’s innocent mistake and your child’s life.
Establish Your Child’s Food Allergy Emergency Action Plan
Of utmost importance is establishing your child’s Emergency Action Plan, the series of steps the nurse or teacher must follow in case your child is known or suspected to have ingested an allergen or is displaying symptoms of allergic reaction. Your plan should be tailored to your child’s specific circumstances and must be agreed upon in advance between you and your child’s doctor. It includes the list of foods to which your child is allergic and the actions to take under specific circumstances, such as if your child is suspected of having ingested an allergen or is displaying certain symptoms. The school nurse may provide paperwork to be completed by you and your child’s doctor, including permission to administer medication. Consider providing more than the basic paperwork to provide a comprehensive action plan.
Here are the steps for preparing your child’s action plan:
- Print a template from Food Allergy Research and Education (FARE), an excellent source of information for you and your school;
- Take it to your child’s doctor and agree to the proper steps for each contingency and have him sign multiple copies;
- Print copies of a recent photo of your child and affix one to each plan copy;
- Present a copy each to the nurse, principal, and teacher and go through it together step by step to make sure they each understand what to look for and what is expected;
- Make sure to provide the nurse with all your child’s required medications labeled clearly. Before you do, note their expiration dates and be sure to provide the nurse with fresh refills before they expire.
The goal is to make sure you understand and agree to who will be responsible for initiating the action plan, who will have access to drugs like epinephrine, antihistamines and bronchodilators, where the drugs will be located and who is trained and authorized to administer them during an emergency. Also make sure that sufficient backups have been trained and authorized in medication administration in case the primary person is away.
Learn and Influence School Policies
When my daughter started kindergarten, there were few policies in place regarding food allergies. Over time, with persistence, education and considerable effort on my part and the part of other parents, new policies were adopted. Here follow a number of policies which your school should have in place. If they don’t, you should consider advocating for their adoption:
- Ban of foods containing specific allergens from school property – This is the gold standard of policies that best safeguards against accidental exposure to the allergens most responsible for anaphylaxis in the cafeteria, classrooms and playground. This will be difficult to enact, but many schools already enforce such bans for peanuts and tree nuts.
- Ban of foods containing specific allergens from all areas outside the lunchroom – This is second-best in case your school is not willing to ban these allergens entirely, and thus minimizes control issues to the lunchroom.
- Aggregation of food allergic children by grade – Especially in the younger grades where lunch or snack time takes place in the classroom, placing all the children with food allergies in a single class makes enforcement of rules much simpler for all occasions involving food. At my daughter’s school at the beginning of the year, a note is sent home to parents of all children assigned to such a class; it outlines the foods that cannot be brought in and provides a reference to a safe snack list. First thing each morning, the teacher, teacher’s aide or nurse checks all snacks to make sure they’re safe. If there is any ambiguity, the school nurse is the final arbiter. The nurse can keep a stash of safe snacks and swap them for a questionable snack when one is discovered. If your school officials resist this suggestion, offer to donate safe snacks to the cause. It helps to have an up-to-date guide of safe snacks to distribute, consider ours at SnackSafely.com. More about this shortly.
- Establishment of an allergen free table – Even if your school adopts a complete ban of foods containing peanuts and tree nuts, they should designate a table in the cafeteria as “allergen free”. This table should be wiped clean between each lunch period and reserved for children with similar food allergies. Each child should be permitted to bring a buddy to the table, usually for the week, whose lunch has been checked for compliance with the guidelines for that table. Our school traditionally picks a classmate of the same gender at random. A note is sent home with the child one week prior notifying the parents which foods must be avoided and providing them an opportunity to opt out. The buddy’s lunch is checked prior to entering the cafeteria to ensure compliance. You’d be surprised how sensitive children can be, often more so than their parents. Many of my daughter’s classmates would request nut-free lunches so they could sit with her at the special table. Another benefit is that my daughter had the opportunity to have lunch with each girl in her class and get to know each one individually!
Ideally, a lunch aide should be dedicated to the allergen free table, especially for the younger grades. During my daughter’s very first week of kindergarten, a friendly child came by her table to say “hi” carrying her peanut butter and jelly sandwich. In this case I was there to stop her and guide her back to her table, but a dedicated adult should be on hand to monitor closely.
- Absolutely no sharing or swapping of food – This is self explanatory but one of the most important rules to adopt. An estimated 25% of the anaphylaxis reactions in school are by children who have never been diagnosed with a food allergy! This rule helps protect all children from accidental ingestion of a food they may not even know they are allergic to.
- Hand wiping/washing for all children after lunch – This is simple but must be performed with adult supervision to ensure compliance. Before children may leave the cafeteria, they must clean their hands with a wet wipe or wash with soap and water. (Remember, allergens are proteins, not germs – the use of hand sanitizers is not sufficient.) After the first few days, this becomes an automatic habit for children and sets the stage for better meal-time hygiene at home! At my daughter’s school, the principal or nurse explains the hand wiping procedure at each lunch period during the first week of school, and the lunch aide ensures compliance at the end of each lunch period. To help facilitate implementation of this rule, you may want to bring a note from your child’s doctor explaining the danger of contact reactions and the importance of hand wiping. You may want to attend your child’s lunch period for the first week to observe and ensure all procedures are being properly administered. This also provides a great opportunity to meet the lunchroom staff and enlist them in the effort to keeping your child safe. Your presence will reinforce your commitment in the eyes of your school officials and remind them that you are monitoring them as well. Should you notice any issues, be sure to discuss potential modifications to the procedures with your child’s support team.
- The nurse attends all field trips – Excursions outside the school present a separate series of challenges to keeping your child safe. The school nurse should be present at all times and come prepared with everything necessary to execute your child’s emergency plan, including a copy of the plan itself as well as the medications indicated in the plan. All the other rules regarding food should still apply, including provision of an allergen free eating space, mandatory hand wiping, and designated lunch buddies. In addition, the nurse should carry the contact details of each student’s parents and doctors in case of emergency. If you have the time, consider volunteering as a chaperon on class trips. Even if there are no opportunities to chaperon, assert your rights as a concerned parent and demand you accompany your child on the trip. As a matter of policy, our school now requests that parents of food allergic children attend.
- No food used for class projects – All school crafts and holiday activities should avoid the use of foods.
Party and celebration guidelines are especially important as these are often times when food is shared, making the prevention of contact reactions especially difficult. Here are a number of important guidelines if your school does not prohibit food at classroom parties entirely.
- Party treats must be chosen from a pre-approved list – The list should include a selection of snacks that are readily available at the supermarket that expressly avoid the allergens in question, both as an ingredient or as part of the manufacturing process as mentioned on the label. These snacks should be in their original, unopened packaging and be approved by the nurse prior to entering the classroom. Given the information in advance, most parents will be happy to buy a safer snack that avoids allergens, especially if they have specific recommendations regarding which snacks to buy. A safe snack list also helps avoid confrontation with other parents when planning school celebrations. Parents often become intolerant and resist when they are overwhelmed by being forced to read food labels they may not understand; providing a comprehensive list of snacks that they recognize and are readily available lifts their burden and makes it easy for them to comply. A list of this sort requires a significant commitment to research and keep up to date; I know because it is one of the first contributions I made to our school system long ago. A major reason for my co-founding SnackSafely.com was to allow other parents and schools to benefit from the work that goes into researching our lists. We invite you to use them directly or as a starting point for creating your own list.
Adoption of the list took a few years before it was strictly implemented at our school. A suggestion for quicker adoption by your school is to come prepared with a list when you first register your child. Most schools do not have the resources to create and maintain such a list on their own but will entertain the use of one that is already prepared. Make it as easy as possible for them to agree. Also keep in mind that, due to limitations of current food labeling guidelines, manufacturers are not required to disclose the potential that a food may contain traces of an allergen. This means that reading the label on a snack is not enough to safeguard a child with food allergies! The final approval for a snack must come from the food allergic child’s parent. Before a celebration involving food, always check in with the teacher and school nurse to confirm that your child can eat the snacks provided.
- Food allergic children may accept alternative treats from a “goody box” maintained by their parents – This one is imperative: Never trust anyone to give your child a treat that was not directly approved by you. Agree that for celebrations, your child’s teacher will help her select a treat from her personal goody box if any of the treats are questionable, and be sure to keep it stocked accordingly with treats you have approved.
- No homemade treats in the classroom – There is simply no way to verify which ingredients a homemade treat contains, even if it is prepared by the most well-meaning parent.
- Goody bags may contain only non-food items – Often during Halloween, Christmas or Valentine’s Day, a parent or teacher will send kids home with a goody bag. These should contain only non-food items, such as pencils, pads, stickers, cards, stencils, etc. and be pre-screened by the school nurse.
A Note About Other Allergens
Peanuts and tree nuts capture many of the headlines, but your child may be allergic to other foods. Our daughter provides a good example: though she is highly allergic to peanuts, she also has an allergy to eggs. Even in a school that has adopted stringent rules regarding peanuts and tree nuts, it may take some additional time and effort to have them recognize your child’s specific needs.
Become a Class Parent (But Beware!)
If you’re lucky enough to have the flexibility, you should consider volunteering as a class parent. As a class parent, you have the opportunity to help plan and chaperon class parties, celebrations, and field trips. In doing so you can be involved in party food choices and be close on hand to ensure your child’s safety during the times that are most frenetic and present the greatest challenges.
If we lived in a perfect world, you would work in harmony with other well meaning parents who understand and are sympathetic to your child’s special safety needs. In reality, this may prove to be your most trying issue: dealing with ignorant, argumentative parents who are resistant to change and believe your child should be segregated so as not to inconvenience others! In my case, I volunteered as a class mom for my daughter’s kindergarten class and found myself in direct opposition to other moms who were resentful at having to make a few simple accommodations to ensure the safety of my child and others in her class. Was it really so much trouble to substitute an unsafe pretzel with a safer brand that cost the same and was available at the same store? I wondered how resentful they would be if someone handed their child a homemade cookie baked with arsenic!
It was then that I created the genesis for SnackSafely.com, a one page snack guide to show that there was a variety of snack choices readily available at the local supermarket that would keep the most egregious allergens out of the classroom while ensuring that no non-allergic child would be deprived. Eventually the list was adopted by our school district and is now circulated throughout the country.
Though there were certainly moms sympathetic to my cause, I learned a valuable lesson: Be careful when engaging other parents! It is best not to address your child’s needs directly with them; if you encounter resentment or resistance, simply take note of your concerns and discuss them directly with the nurse, teacher and principal. Let them communicate with ignorant, judgmental and insensitive parents. It’s the job of your child’s support team to enforce school rules and policies, so start at the top and let the policies you helped shape work their way down! Consider asking your school officials to distribute our Open Letter to Parents; it may help foster understanding with other parents and help avoid nasty confrontations.
Persist and Educate!
In summary, safeguarding your child is paramount. It is my hope that your child’s school already has many of these policies in place and is willing to accommodate you by enacting the policies that are still needed. While our school has come a long way and has largely been accommodating, it has been an iterative, sometimes frustrating process. But take heart: always remember that with persistence and education, change will come!
We’re interested in your suggestions, feedback, and anecdotes regarding sending your food allergic child off to kindergarten. Please take a moment out to share with the community by posting below.