AT SCHOOL FIRST PERSON ON THE SCENE

The caregiver is the first responder in any serious medical situation because they are first on the scene and first to assess the situation. In my role of Emergency Management Disability Liaison, it is important to bring people together for purposes of positive collaboration.

BY LAURA GEORGE

Having a background as both a caregiver and as an Emergency Management Disability Liaison (EMDL) has provided me with a unique perspective about preparedness, sometimes in ways that are totally unexpected. Recently, we moved from one state to another. My child is in middle school and has both PANS (pediatric autoimmune neuropsychiatric syndrome) and colophony (allergy by way of fumes to pine tar or pine rosin, which is in just about anything you can touch, taste, see or feel). As the school has a policy of calling 911 when a child is having a reaction, it was very concerning. This is because most people have never heard of colophony, let alone would know what to do.

It is my firm belief that in any serious medical situation, the caregiver is the first responder. This is because they are first on the scene and first to assess the situation. In my role of Emergency Management Disability Liaison, it is important to bring people together for purposes of positive collaboration. As a result, many one-of-a-kind projects have come about and are still in place to this day. Stepping outside the role of "mom," my mind began an intense debate on what the local responding fire department would need from the first person on scene. The school would also have no familiarity with colophony and yet, they would be the first people to arrive on the scene if my child had a reaction.

The first item completed was to contact the school board and locate the District Exceptional Student Education Specialist (ESE). Being concise, I shared the most important points about my child's health concerns, along with their educational needs. I further explained that it was important to contact the school quickly to preemptively train them on how to work with my exceptional child. Fortunately, the ESE Specialist understood that this was a unique situation and she immediately got to work in assigning my child to a school. She did this quickly, prior to the holiday break, as opposed to having to navigate the normal seven day process. This was to quickly facilitate communications between the school and myself. Within a week, yet prior to the holidays, I was connected to the school counselors.

GETTING TO KNOW YOU: (Left) The notification cube would sit on my child's desk name side up. When green was facing the teacher it meant that everything was fine. When rotated once, yellow would appear and the teacher would then know that a reaction might be coming on; Once more for red, and the teacher would know immediately to get assistance. (Right) A self-portrait cartoon of Charlotte; While the focus was for my child's benefit, I felt it would be an opportune moment to create a future stepping stone opportunity that would benefit any family with an exceptional child having high medical needs.

Once again, I explained my child's health concerns, educational needs and desire to have the school pre-educated on my daughter's health, so that when she physically attended, there would be no surprises. Instead, it was hoped that there would be calm order when my child's reactions occurred. They not only welcomed my discussion, but embraced it and together we decided that we would create a plan that would work for everyone who would be involved with working with my child. The first step was to create a small document about my child, the diagnosis, the symptoms, how to respond and the role I felt each group (school administration, counselors, teachers, the clinic and myself) should play when my child had an allergic reaction.

This was followed up by letting the reading audience know that in reading the document, they were automatically considered as part of my child's team, which also included medical professionals and the fire department. Additionally, I offered resources about the condition, suggestions for alternative supplies, my willingness to be there for each question they will have, and what they would see my child do during the reactions. Knowing the completed document would need tweaking and additional items addressed, each version was always sent with the accompanying statement, "How else can I help?"

After sending out the, "Things to Know About my Exceptional Child" document, the school suggested that my child and I come in to create the 504 (with the medical plan), meet the counselors, and other staff members. While there, we were able to tour the school and see what items (in terms of fumes) and challenges there might be. To my astonishment, this did not just occur once but three times. In hindsight, it was actually a great idea, as each walk-through presented something differently. The third walk-through even had the school principal accompanying us, and he started catching things that might be prob that might be problematic. Some of the challenges that were found were a few classroom floors, jugs of sanitizer, and formaldehyde used in the science class. To address those items working with the school, some of the classes were changed to navigate around the flooring, and a different science class was assigned.

The COVID-19 sanitizer was a bit tricky. Due to the chemical composition of some routine household supplies as well as sanitizer, the bottles are designed with micro-perforations to accommodate the chemical fumes so it can breathe instead of becoming combustible. As my child was reacting very poorly to the sanitizer being used in the school, it was decided that each classroom bottle would have a loose covering garbage bag placed over it, with only a hole for the liquid to come out so students could still use it. Later it was learned that some of the teachers who previously met on the conducting the tours moved the sanitizer away from the entrance door so it would not be in the direct path of my child.

One other challenge that came up was addressing the manner in which my child would self-identify to the teacher that she was not feeling well. This needed to be accomplished easily, without the concern being advertised to the rest of class. Recalling an idea from my earlier employment years working as a secretary for an executive social worker, a communication cube was created. Green floral foam was purchased from the dollar store, along with red, yellow, and green fume safe paints for my child. On one side their name was placed (in case it was left behind), the second side was painted green, the third was yellow and the fourth was red. This cube would sit on the desk name side up with the green facing the teacher. Green would mean that everything is fine. When the cube was rotated once, yellow would appear and the teacher would then know that a reaction might be coming on. Once more for red, and the teacher would know immediately to get assistance. (We later learned that the common retail/grocery store has four-sided emory boards which would also work in this situation.)

For the next week or so, the school, their clinic, and I worked together to iron out the details while navigating the changing semester schedules and COVID-19. Then my child was assigned to online classes, as the next semester had started. She had already missed two weeks of school due to leaving the old one a week early, and the new one delaying the start in coordinating the additional details. Even though my child physically was not on campus, the document about my child (named, "How to Work With my Child"), was sent to all of the teachers with the counselors copied on it. A few responded right away and expressed their appreciation for the preparedness plan that was being put in place. With the plan in place, the backpack packed, two communication cubes packed, my child began physically attending the school the week after.

Of course, a few days later, my child was sent to the clinic with the symptoms of a mild reaction. The plan the school and I had created together worked. The teachers called the clinic and sent my child down even though the reaction was mild. They called me and, as we live around the corner, I was there within minutes. During that event, we discovered another item to overcome – which was that the neighboring building on the other side of the road, a high school, was letting their kids out early for the day, and it prevented me from getting to the school more quickly than if I was not there. But that was okay, because the plan is still in the early stages. There will be hiccups, and it provides an additional opportunity to collaboratively refine another item in my child's preparedness plan. This also lends to positive relationship building between the parent and the school.

THINGS TO KNOW ABOUT MY EXCEPTIONAL CHILD

• Name

• Parent's Name, Phone, Email Address (Include best time to call)

• Diagnosis

• Symptoms

• How to Respond/Role Play

• Alternative Supplies

• Authoritative resources supporting Child's Unique Needs

Aways reiterate your willingness to work with them. Remember to add, "How else can I help?"

PRODUCTIVE DIALOGUE: The school not only welcomed my discussion, but embraced it and together we decided that we would create a plan that would work for everyone who would be involved with working with my child.

Since then, my child has had additional subsequent reactions at the school. As a result, I felt it was important to bring the fire department into the plan with the school and myself. With the ESE Specialist's assistance, a connection was made to the county fire training department. They were not only receptive to the idea, but have brought up many worthwhile questions and ideas on how they can best respond to the unique situation my child brings to the community. Due to my background as an EMDL, I suggested that a meeting be held with the local fire department, the school, and my child so we could all collaborate and meet each other at the same time. While the focus was for my child's benefit, I felt it would be an opportune moment to create a future stepping stone opportunity that would benefit any family with an exceptional child having high medical needs.

In Dr. Seuss' book titled The Lorax there is a great quote. It says, "It is not about what it is, it is about what it can become." This exercise was not just about my child's health. It was an opportunity to bring a wide variety of professionals, willing to work together for my child's educational future and success, as well as for the future of other exceptional children. Today, my exceptionally one-of-a-kind child is successfully physically attending school, making friends, has a big smile on her face— and this first responder, caregiver, EMDL mom is very happy. •

Footnote: On the day this article was submitted to EP Magazine, my child and I gave a presentation and answered questions to representatives (including executive and training staff) from two of the county fire departments, a deputy sheriff, and a representative from the school clinic. Throughout this entire event, we were consistently thanked, with grateful appreciation, for educating everyone about my exceptional child, as well as their needs before they physically attended school. One person even called me a "Mighty Mike Tyson!"

A huge Thank You! goes to the St. Lucie Fire Department and Middle School, for working so hard to make this happen and benefit so many now, and in the years to come! A special Thank You to E.G, M.A, L.M., S.L. and O.L. for their volumes of time and sense of humor that made all the time invested to accomplish the above on my child's behalf, worthwhile.

ABOUT THE AUTHOR:

Author of Emergency Preparedness Plan: A Workbook for Caregivers, People with Disabilities, the Elderly and Others, Laura George is an Emergency Management Disability Liaison and sits on the National Center for Independent Living Emergency Preparedness Committee [ NCIL.org] as well as other national, state, and local committees. She has assisted in a variety of disasters spanning from Colorado to Florida and back. The last 14 years she has devoted her time to the idea that emergency design needs to include everyone. Her spare time, is spent with her daughter (PANS/Colophony) and dog, Turkey.