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(If you're reading this, you've likely already read Part 1 and Part 2 of the "4 Things Counselors Should Know About Food Allergies" series. If not, I'd suggest you read those first).
When people receive a food allergy diagnosis, it has the potential to turn their world upside-down. I shared some of my personal thoughts and feelings from when my youngest was diagnosed with a peanut allergy in my article, "Navigating the Emotional Seas of Food Allergies: One Parent's Journey Towards Resilience."
"In an instant, it feels as though your world has been turned upside down, and that everything you envisioned for your child’s future is no longer possible. While he had a moderate anaphylactic reaction after two bites of a peanut butter and jelly sandwich just days before, I was still living in denial. I didn't feel that I could handle the reality of what my gut knew was true. That all changed with one phone call. At that moment, it didn’t matter that I was a licensed clinical professional counselor, trained in helping others cope with their feelings; these emotions were too raw for me to process."
Once past the initial shock of the diagnosis, people must immediately get to work on creating new guidelines and routines in order to ensure safety. That requires absorbing a lot of information, digesting it, and then putting it into practice. So it's no surprise then that this process is made easier if support is received, especially from family members and schools. In an ideal world, those managing food allergies would receive understanding, compassion, and support from all of their networks. Unfortunately, that's not always the case.
Families Are Often Dealing With The Lack of Support From Somewhere - Usually Within Schools or Families
Too often we hear of schools that aren't supportive, even with the least restrictive of safety precautions, or extended family members who believe that safety precautions are examples of over-reacting. It's crucial to know that while most can accept the fact that foods can be dangerous to those with food allergies, many people aren't as understanding or accepting when it comes to the specific details of living with food allergies or implementing food allergy safety plans.
This lack of support can make those with food allergies feel like they're headed upstream without a paddle. Imagine if your child had diabetes and you had to convince others that it was a serious illness requiring specific protocols in order to keep your child safe. Those managing food allergies often find themselves needing to convince people just how serious in nature food allergies truly can be. Therefore, you can understand why it'd be frustrating and downright anger-producing for people whose support systems don't view food allergies as a serious condition, despite being able to accept protocols for other food-related medical conditions such as diabetes.
When working with someone managing a food allergy, it's important to assess their support network in order to understand whether this is a source of relief or stress. To help with that assessment, here are some common areas where those managing food allergies may feel unsupported.
SCHOOLS
Food Allergy Guidelines - The CDC created a toolkit to help schools implement the Voluntary Guidelines for Managing Food Allergies. Therefore, in theory, schools that utilize these guidelines should have a decent understanding and use of food allergy protocols.
Unfortunately, many food-allergic families are still met with resistance and lack of understanding/adherence to their emergency action plans, even from schools with a food allergy policy in place.
If that's the case with schools that have policies, can you imagine how difficult it must feel for those families that attend school districts without a food allergy policy? The daily uncertainty and fear associated with sending a child to a school that exhibits inconsistent or poor food allergy protocols would likely be insurmountable for many.
Research about parent perspectives on school food allergy policies was published in 2018, and it supports many scenarios shared via online food allergy support groups.
Some insights revealed from this research that may be helpful to know are:
To date, little research has been conducted examining current food allergy policies in US school systems and even less on the opinions of parents of children with food allergy regarding those policies and their utility;
Approximately one in five parents in the study did not feel that their food allergic child was safe while at school;
Of the 289 parent respondents, 18.7% felt that school was unsafe for their food-allergic child, and an additional 8.7% were unsure about their child’s safety while at school;
Nearly one-quarter (24.2%) of parents did not know if their child’s school had stock epinephrine available, with 28.6% reporting uncertainty about epinephrine policies related to field trips and 54.3% reporting uncertainty about epinephrine policies relating to after-school activities;
In the lunchroom, the policies most frequently reported to be in place were designated areas in the lunchroom for students with food allergy (63.4%) and clear cleaning procedures (55.4%). Parents were least likely to report that menus with allergen information were available to them (34.6%) and that food items were labeled with allergen information (12.5%);
Policies related to food allergy education and training were among the least frequently reported. While 37.2% reported that an adult on their child’s bus was trained in the use of epinephrine, only 10.7% reported that food allergy education/training was available for students;
The vast majority of schools have at least one student with food allergy, and one survey showed that 67% of schools had made at least one accommodation for children with food allergy
504 Plans
Some families opt to have a 504 plan, which is a written document that outlines the accommodations the school will provide. This plan helps hold the school accountable by "guaranteeing that students with disabilities will receive the services necessary to get all the same benefits of an education as all other students." It typically addresses important information such as where the epinephrine auto-injector will be kept, and necessary accommodations for the classroom, lunchroom, and on field trips. However, for some, getting this 504 plan established is nothing short of a battle, as some schools use a variety of reasons to imply that those with food allergies aren't eligible for this plan. Therefore, some clients will need support and guidance through the 504 planning process, or at the very least, help coping with the emotions that arise when schools don't work with the family to accommodate food allergies in a reasonable manner.
Bullying
There are many reports of bullying incidents against children with food allergies. A research study conducted in 2011 on this very topic revealed that "45.4% of the children and 36.3% of their parents indicated that the child had been bullied or harassed, and 31.5% of the children and 24.7% of the parents reported bullying specifically due to FA, frequently including threats with foods, primarily by classmates." Additionally, "parents knew about the child-reported bullying in only 52.1% of the cases." A longitudinal study on food allergy bullying was published in 2014, which concluded that any length of bullying was associated with lower quality of life for the child, and suggested that parental involvement was key in finding a solution to the problem.
It might be assumed that all bullying that food-allergic students experience comes from their peers. However, that's not always the case, as there are many reports of students being the recipient of negative comments and actions from adults, such as teachers or coaches. When these adults go out of their way to make comments that highlight a child's food allergy or single them out as the reason for changes to activities, it is humiliating and often interpreted by the child as bullying. Therefore, it's key to assess how food allergic child clients feel about navigating the social aspects of school, both relating to peers and adults. Be on the lookout for other potential behaviors that might be masking how the child feels, especially if they're unable or unwilling to verbalize bullying or social exclusion incidents.
FAMILY
When family members offer understanding and are willing to adhere to food allergy safety guidelines to allow for inclusion, it can be as if a weight is lifted. But for those who are met with resistance or even disbelief from family members, that weight gets exponentially heavier since many are then faced with tough decisions, such as whether to miss holiday gatherings or even, in some cases, whether or not to sever relationships. Nicole Smith, the creator of the Allergic Child site, shared experiences where her own father suggested she was being over-dramatic about her son's allergies, even going so far as sending research studies suggesting she expose him to his allergens.
It's not uncommon for the lack of support from family members to put additional strain on the marriage or relationships within the immediate family. Because emotions run high when it comes to food allergies and family conflict, it will be important to gain an understanding of the family dynamic as well as the conflict. Pay attention to generational divides and cultural upbringing within family systems, as these factors can impact how family members conceptualize food allergies.
Families navigating these issues will benefit from guidance on how to educate their loved ones about food allergies, develop a united front to address conflicts, create a plan on how/when to address the conflicts with the family member(s), and what to do should the outcome not be ideal.
FINAL THOUGHTS...
Food allergies are typically a lifelong condition, so it's key to understand that there will be chronic stress as well as episodes of acute stress. Just as with any medical condition, support is essential for those managing food allergies. For some, your understanding and willingness to learn about life with food allergies might represent the only source of support they receive. For others, you'll be an additional layer of support to help them through the episodic phases that require more guidance. Being aware of the fact that true food allergy support can often be inconsistent and spotty will only help you better understand your food-allergic clients and the challenges they may be currently facing or have previously faced.
June 2020 Update:
Due to COVID-19, many school districts in the U.S. are currently contemplating various plans to accommodate schooling for the 2020-2021 school year. One of the suggestions in the CDC's recent recommendations for returning to school includes students eating lunch in their classrooms. For some with food allergies, this may pose an additional layer of risk at school. The following resources may be helpful in understanding this factor in more depth:
If you're working with a client who has food allergies and feel you need more information to educate yourself, check out the following resources, in addition to the links within this post:
Challenges of Food Allergies Connected to Personality Traits for the First Time (Science Daily, March 2018)
Managing Food Allergies in Schools: Guidance for Parents (FARE)
Exploring Food Allergy Dad Experiences podcast & blog post (2020 survey)