Inclusive Leadership can be Life Saving

Students with Food Allergies Depend on Us

It was this time last year that our lives took a strange and unexpected turn. My grandson had been visiting us during Spring Break, and as typical in Arizona during March, we spent a great deal of time enjoying the outdoors. During one of his last days with us, he broke out in a rash on his back and neck. Because the pollen count was high, it wasn’t too big of a surprise to me that he was complaining about itching; he had dealt with eczema and other skin rashes before, so this was not uncommon. I put some cortisone cream on the rash, and let his mom know about his reaction when she got to our house.

The next morning after having cereal for breakfast, he broke out in hives. This time his skin was worse; red and blotchy all over. His mom gave him Benadryl and monitored him closely. This was the day they were heading home, so she was hopeful he would be okay for the plane ride back to Reno. Although itchy, and now tired from the medication, he made out okay. When they got home, she bathed him in soothing colloidal oats to ease the discomfort of the itch, and he had a decent night’s sleep. The next day he went to preschool as usual.

Then it happened. It wasn’t more than a minute or two after his first bite of pizza that he again broke out in hives. This time his coloring turned flushed, and his eyes, face, and lips began to swell. His school called his mom immediately, and she rushed him to get emergency medical care. The doctors and nurses at the ER immediately noticed the signs of anaphylaxis and took good care of my 4-year old grandson; pumping him up with epinephrine and steroids. He reacted to the medication with hyperactivity, aggression, and a range of emotions he wasn’t prepared to handle. Needless to say, it was a rough few hours in the ER for both him and his mom.

It turns out my grandson developed a sudden allergic reaction to dairy. Since then, he has also proven to be allergic to wheat and egg.  His food allergies are a life-threatening condition that can cause him to stop breathing immediately. He now follows a highly restrictive diet, wears a medic-alert bracelet, and carries an epinephrine auto-injector device everywhere he goes.

Every Label. Every Time

Currently there is no cure for food allergies. The only option is complete avoidance of the specific allergen. We have all become cautious readers of product labels, as it is unreal how many products contain milk, milk derivatives, wheat, and/or eggs. We avoid food and products that do not have an ingredient list, and we read labels every time we shop because manufacturers occasionally change their recipes or use different ingredients for varieties of the same brand.

We have also become diligent about food preparation, ingredients, and the possibility of cross-contamination when eating out. There are a few restaurants that accommodate with allergen menus, and have a separate space for the preparation of food for those customers that have allergies. We are forever grateful for their inclusive policies.

Our family has learned to accommodate as well. This year during Spring Break, my grandson came to visit again. This time, we had fun trying out safe, allergen-free recipes together. Pizza and chocolate chip cookies were two favorites that with a few substitutions and a little ingenuity, tasted great!

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The Responsibility to Educate and Lead

All this talk about how our lives have changed over the past year brings me to my current role as school superintendent. I’ve always been compelled to lead inclusively, and with the prevalence of allergies increasing, I believe I have a responsibility to help educate and lead policies that ensure students with food allergies are not only safe, but included and feel a sense of belonging. With 1 in 13 children now struggling with this condition, it means that each classroom has 1 to 2 students with life threatening allergies, and to me, that’s significant.

While it may be impractical to achieve complete avoidance of all allergenic foods at school, as there can be hidden or accidentally introduced sources, it is definitely possible to reduce children’s exposure to allergenic foods within the school setting. Education and supervision are key. Additionally, the following guidelines should help:

• All food allergic children should only eat lunches and snacks that have been prepared at home.
• Hand washing should be encouraged before and after eating.
• Surfaces such as tables, toys, etc. should be washed clean of contaminating foods.
• The use of food in crafts, cooking, and science classes may need to be restricted depending on the allergies of the students.
• Terms that are not readily helpful such as casein, livetin or hydrolyzed vegetable protein, indicating the presence of milk, egg or peanuts respectively, need to be taught to personnel handling such foods and to the students with food allergies.

Students may come in contact with allergens, and accidental food ingestion can occur despite avoidance measures. It’s imperative for school employees to be ready because treatment must immediately be available for these emergency situations. As leaders of schools that are responsive to the needs of all students, it’s important for us to have an effective food allergy management policy that includes emergency planning and drills focused on keeping students safe.

#AlwaysCarryTwo

EPINEPHRINE is the only drug that should be used in the emergency management of a child having a potentially life threatening allergic reaction. Epinephrine is available in an auto-injector device because of its simplicity of use. Every school should have at least two auto-injector devices, and they should be kept in locations that are easily accessible, and not in locked cupboards or drawers. These locations should be known to all staff members.

Children old enough to understand its proper use, should carry their own epinephrine auto-injector device. For younger children, the epinephrine auto-injector device should be kept in the classroom. Backup epinephrine auto-injectors should be available in other school areas such as gyms and cafeterias.

All students regardless of whether or not they are capable of epinephrine self-administration will require the help of an adult because the severity of the reaction may hamper their attempts to inject themselves. Adult supervision is mandatory, and all individuals entrusted with the care of children need to have familiarity with the signs of anaphylaxis and how to help a student with their auto-injector device. This includes teachers, coaches, playground supervisors, principals, secretaries, nutrition services employees, and school bus drivers.

To some, family members of children with food allergies may seem over-protective, but the level of diligence they need to have cannot be compromised. They have to weigh the emotional impact of being perceived as over-protective against the medical threat of having their child go into anaphylaxis when they’re not around, and that’s not something easy to balance. As school leaders, we can be sensitive to the emotional toll they carry each day by enacting policies that are inclusive in nature, and sensitive to the needs they have to protect their children.

A Rollercoaster of Emotions

As the grandparent of a child with food allergies, there is not a playdate, party, or school activity that our grandson will attend without his mom or us packing safe snacks first. Having a thorough discussion with teachers and other parents is a primary concern when our grandson participates in activities outside his home. It is our expectation that school personnel will always have his best interest at heart. This means knowing the signs of anaphylaxis and responding appropriately and confidently if he were to ever come into contact with an allergen that is life-threatening.

As a school superintendent, I would expect this treatment for any child attending one of the schools in my district. I would want our school personnel to go out of their way to ensure a safe environment and trusting relationship. Inclusive leadership can be life saving.

Belonging and Trust

As leaders of inclusive schools, it is important to understand that social isolation is a real consequence that many students with food allergies face. Creating a positive school environment and culture of acceptance is imperative to ensure a sense of belonging for all students, but it is especially important for kids who stand out as different. Educators should promote well-being, respect, and acceptance amongst students and adults. They should be mindful of activities that isolate or marginalize students, and make every attempt to ensure that students with food allergies are safely included in celebrations and awards.

As leaders concerned with inclusive education, it’s important to ensure our schools’ policies are in line with federal and state laws that protect children who live with food allergies. Many state agencies have published statewide guidelines for school food allergy management. The Food Allergy Research and Education (FARE) has links to all of the states with published guidelines. It is also important to advocate for more to be done, and most importantly, lead efforts within our own system that embrace student self-advocacy and empowerment. As inclusive leaders, we take the time to listen to our students because their perspectives and ideas matter. There’s no one who knows more about living with food allergies than the students who live with them themselves. After all, it’s their lives that are on the line – and to them, our leadership can be life saving.

• What are some of the things you’ve done to ensure the full inclusion of students with severe food allergies in your classroom or school?
• How do you ensure their safety? How do you elicit their voice and self-advocacy?