How Parents of a Child with an Anaphylactic Allergy Can Create a School Safety Protocol

As parents with children with allergies, the new school year is full of worry, fear and anxiety.  Establishing a school safety protocol is a great way to reduce the worry and anxiety for both parents and children with allergies as the school year begins.

In this article, I share some of the measures we have put in place collaboratively with the school to create as safe an environment as possible for our daughter who has an anaphylactic allergy to dairy.  Our daughter has now been in school for several years and we have learned many things about creating a safer environment for her.  We have also improved the process significantly each year through working collaboratively with the school and by taking into account feedback from other parents.

Prepare Yourself to Educate the Teachers and Other School Staff about Your Child’s Allergy

What I have learned so far is that most parents of other children in my daughter’s classes are very supportive – probably around 80% of the parents.  This has meant that we have been asked a lot of questions about our daughter’s allergy.  We have been asked for dairy-free snack and lunch ideas, lists of alternative names for dairy so that they can buy dairy-free products, and how they can help keep our daughter safe. We were also asked to hold an information session for other parents in our child’s class.

At first, I was pretty overwhelmed by all of this, I thought: “Seriously? Not only do we have to navigate the anxiety of a new school year and arrange a safety protocol with the school, but we also have to prepare a list of snack ideas and other things for all the other parents?” Well, the answer is yes.

As parents of children with allergies, we have to do the extra work to keep our children safe.  And the good news is there are lots of great websites out there to help with these types of lists and once you prepare them, the work is done!  So buckle down and prepare to do this extra work in your child’s first year of school.

Key Elements of a School Safety Protocol

You may be fortunate to have a school administration that is willing to work with you from the start and if that is the case, that is wonderful!  If not, hopefully you will get to a stage when they will work with you even if you have had to persistently insist even if you have had to escalate your concerns to the Superintendent, like we did.  (See some tips below if you meet with resistance from the school administration.)

It’s important to note that the school protocol we have in place is a “dairy-safe” protocol rather than a “dairy-free” protocol.  Because nuts are the only allergen that is banned in schools, we have been informed that the schools take the position that they do not have legal authority to ban other allergens, they can merely request that other parents choose not to send the allergens to school.  This means that for all allergens aside from nuts, they will be present in the school and potentially the same classroom as children with allergies but that protocols can be put in place to reduce possible exposure.

Here are a number of steps and measures you might consider as part of a school safety protocol for your child:

1. Medical Forms and Medication

The school sends out a medical form that documents the medical information for each student.  This is important to fill out in detail.  In addition, there is a form in Toronto relating to the management of emergency medical concerns. These provide the opportunity to provide detailed descriptions of the symptoms, and how to administer medication in relation to your child’s allergy.

Your child should also get used to always wearing her EpiPen pouch at school. For our daughter, we put in one dose of Benadryl or Claritin into her EpiPen pouch with the EpiPen itself. We also send a clearly labelled Allergy Medicine bag (it’s a fun pink Dora bag) that has her name on it as well that contains a second EpiPen, more Benadryl or Claritin and her inhalers. The teachers and other school staff should be familiar with what is in the bag and how and when to use it.

2. Meet with the School Administration Early

The first and most important step is to arrange a meeting with the school administration, whether it be the Principal or Vice-Principal.  It is ideal to arrange to meet with the school administration at the end of the year prior to your child starting or the week before school starts.  This enables you to work with the school to put in place at least some of the measures discussed below on the very first day of school. If your child is already in school, arrange a meeting as soon as possible so you can start to implement some of the measures below.

3. The No Sharing Food Rule

The school has a no sharing food rule. Our daughter knows that she is not to eat any food that other students bring in their lunch. This rule is clearly set out by us and the school and the students seem to understand it right away. Of course, this takes away the fun of trading with friends at snack and lunchtime but she and her best friend came up with a very creative solution. They would save the snacks they wanted to trade and then after school they would ask for permission to do a trade.

4. Allergy Letter to all Parents of Children in Your Child’s Class

With the school administration, we co-drafted the letter with the school that would be sent out to all parents in the same class as our daughter.  Ideally, you would have this letter sent the year before to parents of new students starting school who are placed in the same class at your child.  This provides a longer runway for other parents to come up with ideas for allergen free snacks and lunches.  It also gives them warning so they are not surprised during the stress of the first week of school.  The school also sends this letter again on the first day of school to all parents in the class.

The letter includes the following information:

• A description of the child’s allergy
• A request to eliminate the allergen from the class
• Notice that the snack program will be modified to be allergen free (this may not be possible for children with multiple allergies)
• List of allergen-free snack ideas, and common foods containing the allergen (we put these together at the request of other parents during a meeting of all parents that took place during our first year)
• A clear request NOT to talk to the parents (us) about the allergy in front our our daughter, as this greatly increases her anxiety (we put this in after the first year, where other parents very kindly expressed their concern and empathy but this made our daughter so much more worried about her safety that we amended the letter to include this request).

5. Modified Snack Program

Because milk is so easy to spill and the grease from other dairy, like cheese, can be spread onto various surfaces, we arranged with the school that a modified snack program would be put in place for our daughter’s classroom.  Instead of getting milk or cheese, the children get an extra vegetable or fruit or grain.  Initially, there were some complaints from other parents about this due to the fact that the meal company reduced the snack rather than replacing the dairy item with another snack. This has since been resolved, and for the most part, the other parents don’t seem as concerned about this modification.

6. Hand-washing and Cleaning Protocols

The school implemented a rigorous hand-washing protocol for all students whenever they enter the classroom from outside and after snack and meals.  In addition, the tables were cleaned at the end of each day by the custodial staff.

Tip: It’s also worth inquiring about the type of cleaner being used.  In our case, we learned that it was solely vinegar and water.  Since vinegar and water does not clean dairy grease off surfaces, I purchased another soap-based cleaner and asked that they use a particular cleaner to clean the tables.  The school then purchased an appropriate soap based cleaning product to use in her classroom after that.  It is recommended that you check into which cleaning products are being used and determine whether they, in fact, clean the surfaces of allergens sufficiently.

7. The Separate Lunch Table

This is an important measure but causes stress as well.

In the younger grades, the students would all eat in the classroom. During this time, we arranged for a particular table to be designated as dairy-safe. Our daughter would sit at that table and other students in her class that brought dairy-free lunches would be allowed to sit with her there as well. The tables were also always cleaned after lunch time.

Now that she is bigger, she eats lunch in the cafeteria. There is a designated table that is dairy-safe and it has a dairy-free zone sign above it. Our daughter sits at that table at lunch but often worries about not having someone else to sit with. We do our best to arrange with her friends’ parents for them to send a dairy-free lunch so they have the option to sit with her but there are some days that she ends up sitting alone.

The cafeteria is full of students bringing their lunches to their tables while balancing glasses of milk on their cafeteria trays. We have weighed out the advantages and disadvantages of this and have decided that the separate table is a better option for our daughter. But it is hard and sometimes heart-breaking to know that she dreads lunchtime and worries about sitting by herself.

How to Deal with Resistance from the School Administration

We’re fortunate to have a school that has put in place a significant safety protocol to keep our daughter safe.  The Vice-Principal has gone out of her way to work with us to improve and institute a relatively seamless process to create a “dairy-safe” environment for my daughter.

At first, however, the school was resistant.  Although this amazing Vice-Principal was very supportive and willing to put a safety protocol in place, the Principal of the school was not (the Principal has since moved on so we’re hopeful that the new Principal will work collaboratively with us to create a safe environment for our daughter)

Tips for Discussing Your Child’s Allergy with the School or Superintendent

It’s important to follow the appropriate steps to raise concerns:

1. Start with an in-person meeting with the school administration (in our case it was the Vice-Principal) to see if that would be sufficient to have our concerns addressed. If the in-person meeting does not result in the desired outcome, you may have to escalate to a documenting your concerns in an email or letter.

2. After the in-person meeting, you can send a follow-up email summarizing the result of the meeting or outlining your concerns if they are not addressed.  When we realized that the Vice-Principal was not able to move forward with the safety protocol, we let her know that we would be sending an email to the Principal documenting our concerns.  We then sent an email to the Principal clearly outlining our concerns and suggesting satisfactory solutions.

3. Escalate your concerns if necessary.  If we didn’t receive a response or we weren’t satisfied with the resolution, then we would send an email to the School Superintendent. (I also tried sending an email to the School Advisory Council but that turned out to be ineffective.)

It’s important to provide a fair opportunity and timeframe for the school to respond to your concerns.  You want to make sure that, to the extent possible, you maintain a good relationship with the school.  The reality is that they are taking care of your child and you don’t want any tension to affect their experience in school.

Key Strategies and Information for Written Communications

In order to maintain as good a relationship as possible, it is advisable to keep the tone as cordial and collaborative as possible for any written communications.

Tip: One way to make sure that tone is appropriate is to ask other people to read over your emails or letters before you send them.  I got several people to read over my emails and letters prior to sending them since I was pretty angry and at times that came through in the way I expressed my concerns.  They provided really good feedback, indicating where I should soften my tone and where I should actually be more firm.  Having other people read through the emails and letters before I sent them, I was able to frame my concerns in a way that expressed my understanding of the difficulty for the school in dealing with complex allergies but also be firm in my expectations of appropriate safety measures.  It is more likely that the school will be receptive to working with you if you demonstrate good will at the beginning.

It’s also important to document your concerns.  Now this might just be the lawyer in me talking – document, document, document but if I hadn’t written so many things down, I wouldn’t be able to share this information with all of you!  Writing down your concerns shows your diligence and also helps you keep a record of your interactions with the school.  Even if you have in-person meetings with the administration, it is a good idea to bring a notebook and take notes of what is discussed.  Also, you may want to keep records of your emails and letters to the school.  These records can be useful if you need to expedite your concerns to a higher level.  Then you can include information such as the dates that you raised concerns and the time that has elapsed without them being addressed.

In order to be persuasive, it is worth including the following key information to make sure that the school takes your concerns seriously:

First, point out that the school is legally responsibility for your child’s safety while he or she is there.  In this regard, in Ontario, you can cite Sabrina’s Law, which is legislation put in place that requires specific measures to protect children with anaphylactic allergies at school. If you live in another jurisdiction, you can research to see if there is a similar law you can refer to that regulates your school with respect to anaphylaxis.

Example: In our case, there was a third party company running a daycare in my daughter’s class before and after school.  Since they were serving milk and permitting the small children to pour it themselves, there was a higher risk of dairy being spilled onto a surface in the room and not being properly cleaned up.  In my email about this, I wrote: “Given that the school is legally responsible for my daughter’s safety and this legal responsibility does not fall to the daycare, the current situation in which the school relies on daycare staff to ensure my daughter’s safety is not satisfactory.”

Second, it’s good practice to refer to the relevant sections of the school board’s policy on anaphylaxis.  Here is the policy that applies in Toronto as an example. If you can link your specific requests or concerns to a particular section of the policy that is always a good practice. The school is required to apply these policies within your child’s school.  Researching what the school’s responsibilities are under these policies helps you to know what to expect and to be aware when these policies are not being followed.

Example: After I sent several emails to the Principal and received no response from her and no satisfactory response from the school, I emailed the Superintendent and was able to cite the section of the policy which requires the school administration to work closely with the parents/guardians and student with anaphylaxis as part of the reason for escalating my concerns to the Superintendent’s level.

Third, as alluded to above, it’s important to include concrete suggestions about what you would like done.  This suggestions could include having a meeting with the school administration or outlining more specific options like having your child moved to a new class or creating an allergen free or safe classroom for your child.

Note: The examples I give throughout this article are relevant to my experience in Ontario, Canada.  For another helpful article that outlines the relevant forms and steps to establishing a school safety protocol in the United States, see Cat Bowen’s article here.

As parents with children with allergies, we want to do our best to create as safe an environment as possible for our children as they go out into the world.  Creating a school safety protocol is one way to reduce the risks of a new school year and help create excitement, rather than anxiety, about the wonderful experience of going to school!

We would love to hear your thoughts and comments on this article below.  Also, please share it if you think of someone else who may find it helpful!

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