What the New School Year Means for Parents Whose Child has an Anaphylactic Allergy

My daughter has an anaphylactic allergy to dairy.  This means that on the first day of school, the anxiety and worry begins all over again.

Dairy products, unlike nuts, are not banned in schools. And these products are frequently served in school cafeterias and sent in snacks and lunches.  As a result, we have the additional worry of how the school will keep our child safe when these foods are potentially everywhere she goes.

In saying this, I absolutely do not intend to minimize the worry that parents have in the context of nut allergies – every parent whose child has an anaphylactic allergy worries about their child’s safety.  As Cat Bowen notes: “When you’re the parent of a child with food allergies, sending them to school is nerve-wracking, scary, and fraught with danger.”

And so we worry…

We worry about how the teacher will manage the classroom to keep our child safe.

We worry about whether the parents of other children in the class will abide by the safety measures put in place to minimize the risks of exposure.

We worry about how supportive our child’s classmates will be about their life-threatening allergy (BTW we have found that the kids are the best at making sure their parents are abiding by the ‘rules’ about allergy-safe snacks!).

And, most of all, we worry about accidental exposure and getting that terrible call from the school.

In this article, which is the first in a series of articles on this topic, I share some thoughts and reflections about the impact of an anaphylactic allergy on a child and on the family of that child.  In the articles below, I share some tips for:

1. creating a safety protocol with the school for other parents who have children with anaphylactic allergies; and
2. parents of children who learn that a student in their child’s class has an anaphylactic allergy and how to be supportive.

The Importance of Safety for Children

One of the cornerstones of effective parenting is creating a safe environment for your child.  It’s actually one of the most important basic needs for children to thrive.

Because of this we have done our best to create a safe home environment. We reduced and eliminated dairy in the household.  We chose not to put our daughter in preschool or daycare to reduce her potential exposure to dairy. And we have a rigourous hand-washing protocol for ourselves and anyone who visits our household.

(My son has actually developed an amazing ability to open the bathroom door and turn on the faucet without using his hands so that if he had dairy outside the house, there is no chance that it touches a surface that my daughter might touch.  He is amazing at keeping his little sister safe!)

Yay! (or Yikes?) She’s Going to School!

A few years ago… as her very first day of school approached, my husband, Robby, and I were feeling okay about sending her to school for the first time.

We had met with the school and they knew our daughter was coming with a life-threatening allergy. In addition, over the summer months, she had been having less frequent allergic reactions. So following months of worry and many late night conversations, these factors combined helped us feel as prepared as we could for her start in Junior Kindergarten.

(I have learned, however, that the reduction in allergic incidences is not necessarily an accurate measure of whether or not our daughter’s allergic reaction to dairy is reducing because as she has grown, we have gotten better at maintaining a safe environment for her. But since dairy is one of the allergies that many kids outgrow, we’re keeping our fingers crossed that she will fall within the high percentage of kids who outgrow it!)

A couple days before the first day of school, Robby took my daughter shopping at Costco.  He put her in a cart, and zipped around Costco at lightning speed (he shops like it’s an extreme sport but I’ll leave that for another article!)

Halfway through the shopping trip, Robby noticed our daughter’s eye swelling up.  Robby immediately ran up to the pharmacy section, opened a Benadryl bottle and gave her some.  He then abandoned the cart and took her to the hospital.

She hadn’t eaten anything while she had sat in the cart so Robby’s best guess was that there had been remnants of dairy – maybe ice cream or pizza grease – on the handle of the cart and she had gotten it on her hand and rubbed her eye.

Her whole face swelled up and one eye was completely swollen shut.  The swelling didn’t subside for several days.

Needless to say, this shook us up and our anxiety levels skyrocketed back up about her starting school.

The First Day, Week, and Month of School Was Great Stressful

The beginning of that first year of her attending school was stressful.

The school didn’t have a letter for parents ready for the first day and it only went out on the Friday of the first week (we’ve worked together to fix this since then – there’s been lots of learning and improvement with us and the school working collaboratively together!).  So the whole first week, our daughter was surrounded by dairy.  She often noted that she didn’t feel safe because she saw kids drinking milk right around her.

The school also put her in a classroom that was being used for before and after care by a third party company that came into the school to provide childcare.  When my husband ran back into the classroom one day after school to retrieve her allergy bag (epipen, Benadryl and inhalers), he saw some very little kids trying to pour milk into their glasses from two very full jugs.  Needless to say, this set-up increased the risk to my daughter significantly.

Once we brought our concerns to the school’s attention, the school did a great job accommodating her safety needs by moving her to a different, smaller class that instituted a specific protocol to keep her safe.  It wasn’t until about four weeks later, however, that this was all set up.  As a result, the first month was very stressful for us and our daughter.

Robby often stayed in the classroom for the majority of each day to make sure she was safe.  He also was on call during school hours.  For many days in that first month, the school called home for him to pick her up early because she was sitting in the office not feeling safe. This was just the beginning of many instances when Robby has had to abandon his shopping cart in the middle of the grocery store.

(So look for my article next week, which provides a roadmap for working with your child’s school to create a safety protocol – my hope is that you can avoid a first month like this!)

We’re fortunate that we have one parent who can always be on call.  This creates less worry for us and reduces our stress a lot.  Other parents who aren’t in this situation likely experience even more stress knowing their child is at school feeling unsafe or having an allergic reaction, with little chance that they could leave work and get to the school quickly.

Every New School Year the Anxiety Begins Anew

Whenever the start of school approaches, I’m reminded about how the most important thing for a child’s development is to feel safe.  Imagine the worry of sending your child to an environment where you can’t guarantee their safety.  Like the oil from nuts, the grease from dairy can remain on a surface invisibly.

Imagine invisible threats to your child’s life all around them.

I have had to accept that my daughter experiences these invisible threats to her safety every time she steps out of our home.  I often worry about how this impacts her ability to grow with confidence and thrive. And I see how this lack of feeling safe manifests in anxiety for her and difficulty coping with her emotions.

Positive Parenting Strategies to Help Her Feel as Safe as Possible

Knowing that we are sending her into an environment that contains invisible, potential threats to her safety, we have worked on several strategies to help her manage this worry, fear and anxiety.  These strategies are:

1. Positive affirmations
2. Emphasizing the positives
3. Talking to her about the strength and skills she is developing as a result of her allergy

The first strategy that has proven effective is to develop positive affirmations relating to her allergy.  Right now, two key affirmations that we are using are: “My body is strong near dairy” and “I’m outgrowing my allergy to dairy.”  These affirmations have helped even when she has been accidentally exposed to small amounts of dairy or is exhibiting allergic symptoms.  I often find that we can repeat these affirmations and she can manage the itchy tongue or slight swelling of her lips without taking Benadryl.

The second strategy is to emphasize the positives.  Every once in awhile we speak to our daughter about the fact that she has had very few incidences of allergic reactions at school and overall.  We also talk about how the school has put in place many measures to keep her safe safe at school.

The third strategy is that we speak to our daughter and reflect on the skills and strength she is developing because of her allergy.  In her podcast interviews and a number of articles, Whitney Johnson talks about the value of constraints.  She talks about how constraints (i.e. limitations) actually create strength. In this article, she says: “Ease ultimately results in weakness; opposition develops strength. …Constraints make it possible for us to fly.”

I was thinking about this idea of embracing constraints in the context of my daughter’s allergy and it reinforced something my sister Rachel has encouraged me to do with my daughter.  Rachel thought it would be useful to speak with my daughter about the opportunity that her allergy creates for her.  So on several occasions, I have spoken to my daughter about the fact that her allergy creates an opportunity that other kids don’t necessarily have to learn about empathy and to develop strength in the face of a situation that is less than ideal.  During these talks with my daughter about her strength and the opportunity that her allergy creates for her, I have seen her face light up and several times at the end she has given me a big hug.  She loves to hear from me that I think she is strong and these talks can help empower her to embrace this constraint and reframe it as something that she can learn and grow from.

Inconvenience vs. Children’s Safety

A couple months after my daughter’s first day of school, I noticed a post on social media from a friend.  She was complaining about the inconvenience of not being able to send a peanut butter and jam sandwich for her child to school because of the ban on nuts. As many of you know, nuts are banned from many North American schools.  There are a number of factors that have resulted in this ban, including some tragic deaths of students, and the school’s justify this policy on the basis that nut oil can be difficult to remove from surfaces and  anaphylactic allergies to peanuts or other nuts can be airborne.

Now, I understand how delicious peanuts are – I love my peanut butter toast in the mornings!  I also understand how inconvenient it is to have to think of different things to send in your child’s lunch.  But after navigating the anxiety and worry about my daughter attending school for the first time, I felt compelled to comment.

My response went something like this:

“As a parent with a child with an anaphylactic allergy, I’m really glad that schools have banned nuts.  This means that parents who have children with nut allergies can send their children to school with a feeling that they will be safe.  For me, as a parent with a child who is allergic to dairy, I send my child to school not knowing if that is the last time I will see her. So I’m glad that parents with children who are allergic to nuts don’t have to go through this every day like I do.”

After I made that comment, my friend kindly took down her rant about the inconvenience of not sending peanut butter to school with her child.

Of course, after that I spent some time reflecting on this interaction.

It provides an important glimpse into a number of important conflicting interests that are raised by anaphylactic allergies. It highlights the conflict between the very high value we put on our individual freedom to choose things for ourselves and our children.  In this case, the conflict between individual freedom (the freedom to send a peanut butter sandwich in your child’s lunch) and community safety (the safety of children’s lives at school).  It also raises equity interests since the ban on peanuts can be difficult for many people, particularly, those who can’t afford other more expensive types of proteins to feed their families.  It also can be difficult for children who are vegetarian or vegan because nuts are an important protein for those families.  Finally, it raises cultural interests since there are people from many cultures who regularly use peanuts and other nuts in their traditional cooking so these nut-free rules may disproportionately and negatively impact those families.

For us, the request not to send snacks and lunch for other children that contain dairy can be met with a lot of resistance.  There is a deep and abiding belief that children need to eat dairy products or drink milk to grow properly.  Dairy is seen as an essential part of a child’s diet in North America.  So overcoming parents’ resistance to not sending dairy in their children’s snacks or lunches can be difficult.

All these considerations are complex, but my perspective is that no child should feel unsafe at school and convenience should never be more important than the life of a child.

As a parent whose child has an anaphylactic allergy, worry, anxiety and fear are just an expected part of every new school year.  And as I send my daughter to school – to walk through a minefield of invisible threats – I will continue to educate others and advocate for her right to be safe at school and insist that the school and other parents do their utmost to ensure this as well.

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