Guest post by The Reluctant Chef: Stephanie Von Dehn Schick
New shoes: check
Completed Anaphylaxis plan and Medication administration forms: check
2-3 current EpiPens ($100 a piece): check
Trendy carrying case for EpiPens: check
MedicAlert bracelet: check
Anxious mom and dad: check
Entering kindergarten is a big milestone for all kids (and parents) but if your child has multiple food allergies, this transition can feel extremely daunting. As some of you may already know from my previous guest post, my 5-year-old daughter is allergic to dairy, eggs, peanuts, tree nuts, fish (presume shellfish) and mustard. Years ago, my husband and I never dreamed of being able to send her to school. We thought it would be too difficult given that her allergies span most of the major food groups. We even considered home schooling since, ultimately, that is the only way to have complete control over her safety. After two successful years of preschool (where most of her allergens were present), we gained the confidence to explore our options. Due to our daughter’s social needs (she is a true extrovert) and her learning style, we opted for the small local public school that is half a block away. The decision of where to send her to school was largely based on two main criteria; proximity to our home and the willingness of the school administration to provide a reasonably safe environment for her. The added bonus of being at the local school is that we benefit from being a part of our community, get to know the other parents and kids in the area and, most importantly, I am close by in the event of an emergency. With diligence, preparation, education, and a healthy dose of courage, we felt that it would be possible for her to go to school.
There were many steps necessary to make this goal a reality. The first thing I did was to set up an appointment with the principal and the kindergarten teacher at the end of the last school year. I was able to provide them with the necessary information to ensure they understood the severity of my daughter’s allergies and to discuss possible safety strategies. Because her allergies are so extensive, the main way to protect her is to make certain that she only eats the food that I send her. I reviewed the importance of the timely use of the EpiPen in case of accidental ingestion (all teachers receive training from the school nurse) and discussed how to avoid cross contamination in the classroom (i.e. hand washing in the mornings and after meals) I also asked that they notify me about classroom activities/crafts that might involve food and give me advance of notice of birthday treat days so that I can provide a safe alternative for my daughter (a bag of treats will be left with the teacher in case no notice is provided). I completed the paperwork required, including getting a letter from her specialist, to apply for a part time aide for supervision at lunch. To ensure that her medication is always near her, we decided that my daughter would wear one EpiPen in a special carrier around her waist while the second EpiPen and bottle of Benydryl would be located in the school office in an unlocked cabinet. Over the summer, I educated her about her responsibilities: never eat food other than what mom sends (this is old news to her by now) and to never take out her EpiPen or let others remove it from her case (unless it is an emergency).
At the beginning of September I met again with the principal, and happily learned that my daughter would be receiving supervision during meal times. The kids eat in a very crowded lunchroom and this is the time when cross contamination would be most likely to occur. As far as paperwork goes, I made a folder with my daughter’s photo, her medical information and contact information so that substitute teachers can be easily informed about her allergies. I had my daughter’s physician complete the medication administration form and the Anaphylaxis Plan that outlines all her allergies and explicitly details the medications she requires (and the consequences if the medication is not given in time). During the parent orientation, the teacher outlined some of the restrictions in the classroom (no peanuts/ treenuts, mustard and hardboiled egg) and thankfully all the parents I have encountered so far have been very supportive and understanding. With dairy still present in the lunchroom, great caution is still needed during meals. For those of you who don’t know, dairy allergies can be just as deadly as peanut (see Sabrina’s Law for more info). My next hurdle is to educate her classmates by giving a presentation using a children’s book to help them understand her allergies, what the EpiPen is for and to answer any questions they may have. Some of the kids have already shown great empathy and caring for my special girl and for this I am so grateful.
In addition to all the meetings, completion of medical documents and trying to figure out what on earth I can send her for lunch, there are emotional issues to cope with. There definitely is anxiety involved in making the leap of faith required to send a child with allergies to school. This became palpable as I filled out my daughter’s anaphylaxis plan. As I pasted a photo of her sweet face to the corner of the document, I felt extremely overwhelmed. To have to describe, in detail, the possible scenario that terrifies me the most, and then trust that others will make appropriate and timely decisions in an emergency, is surreal and scary. I have spent over five and a half years ensuring her safety, thinking about every morsel she eats, monitoring everything she touches and knowing that a thing as simple as some other child’s yogurt could cause her to have a life threatening reaction. It seems foreign to relinquish this huge responsibility to others.
As a result, it feels like I am always on alert and I catch myself jumping whenever my cell phone rings. I’ve also been having an inordinate amount of dreams/nightmares about my daughter having allergic reactions and needing the EpiPen. Just to add to my worries, recent studies highlight how kids are being bullied and teased at school about their allergies and it breaks my heart to think about my child possibly having this experience. I also can’t avoid the fact that there have been kids who have died from reactions while at school. This makes me all the more determined to prepare, educate and plan for possible scenarios where she could be at risk. Thankfully, I have discovered a wonderful community via the Metro Vancouver Anaphylaxis Group. I have learned invaluable information and received support from all the other parents who have sent their kids to school before me and who understand the struggles, worries and daily stressors involved in raising a child with allergies. Beyond these virtual communities, there is little support out there for parents.
My daughter is also undergoing a transformation as she adjusts to all day kindergarten. She is trying to understand why she has so many allergies and why no one else in her class does. We often talk about how everyone has challenges in their life, and this happens to be hers. Overall, she is so accepting of her situation and she embraces each day with such enthusiasm and joy. Every day I marvel at her positive spirit as she uncomplainingly wears her MedicAlert bracelet and her EpiPen strapped around her little waist. I hope that she will learn, through her own struggles, to have empathy for others and their differences and that she will develop strong friendships along the way.
Readers might wonder why my husband and I would risk sending our daughter to school. It was not a decision made lightly. We made this choice because she clearly thrives in a social setting, she has a voracious appetite for learning and because we want her to experience all there is to offer in life. Ultimately, she will need to learn the skills to keep herself safe because food will always be a part of our social fabric. As hard as it is to let her enter the school every morning, I take comfort in the fact that I have prepared her, and those caring for her, as best as I can. I try my best to keep my worries in perspective and I look forward to her huge smile and her animated stories at the end of the day. I am also so thankful that I am able to stay at home with my kids. Knowing that I can be there to communicate with the teachers, bring her home for lunch if I want, volunteer in the classroom and go on field trips with her class, does lessen the anxiety. I am trying hard to find the balance between giving my daughter her independence, without compromising her safety (or driving the teacher crazy!). Like most aspects of parenting, it is an ever-changing dance, and it will take me a lifetime to learn the steps.
Here are a few other useful links for those interested in learning more about allergies: