Severe Allergies: What's that?
Tales of our first encounter with the New Brunswick school system
By Richard Gauthier, former AAIA Board Member, Dieppe, New Brunswick
Apprehension and nervousness are not unusual sentiments when early September comes around for a number of school children. When it's your first child entering the school system, those feelings are also shared by the parents.
In September 1998, my wife Denise and I felt it ten-fold as we prepared to send our four-and-a-half year old daughter Nathalie for her first day of Kindergarten in Dieppe, New Brunswick. A severe peanut allergy was at the root of our worries and sleepless nights. How would an elementary school (K to 3) with close to 300 students be a safe environment for our child?
The answer for most parents of children with severe allergies in New Brunswick now lies in the provincial Department of Education's 14-page ‘Policy #704 – Health Support Services’ which was originally put into effect in September 1999 and was revised and improved in October 2004. This comprehensive cornerstone policy outlines the responsibilities of school administrators and parents, specific emergency planning and procedures in schools, contains a requirement for yearly staff training, and ultimately protects all school-aged children in New Brunswick.
The significant and gradual changes in how New Brunswick schools ensure the safety of children with severe allergies have come about thanks to the tireless efforts of the AAIA led by Gloria Shanks, AAIA's Atlantic Regional Coordinator, and her band of volunteers. In fact, the Department of Education now calls upon our members for staff training sessions throughout the province and the AAIA's Anaphylaxis Reference Kit is now the recognized training tool for all information / training sessions with teachers, bus drivers, custodians, as well as cafeteria and after-school care staff.
All school administrators and district school boards are now well aware of their responsibilities under this groundbreaking policy and have taken measures to ensure that their teachers and staff members receive appropriate yearly training and guidance. Parent input and participation is also now an integral part of the province-wide policy and school administrators are obliged to consult and advise parents on their specific roles and responsibilities. At the beginning of each school year, advisory letters are routinely sent to all parents in schools frequented by children with severe allergies requesting them to refrain from packing their children's lunches with any products with peanut, nut, or other allergens. Certainly, things have changed for the better since 1998.
In preparation for our daughter's entry into Kindergarten in 1998, Nathalie had been taught to only eat what ‘mommy or daddy’ gave her and that she could not share any lunch or food items with other classmates. We were quite confident that she was ready to ‘face the world’ when she had strongly declined to take a few candies from a lady who was offering samples at a booth at a local mall. After reading the ingredients on the bag containing the candy, the lady was astounded to read ‘peanut oil’ and could not believe that a three-and-a-half year old was so aware of her environment. We, on the other hand, were very proud of our little girl.
After educating ourselves since our daughter's first contact with peanut butter at the age of two-and-a-half on the severity of such an allergy and finding what measures were in place in other jurisdictions, we were confident that the New Brunswick school system would be able to put our minds at ease and would have measures in place to protect children who were in their care for 180 plus days a year. We were in for quite a disappointing surprise!
Not only did the school system have no specific policy to ensure the safety of students with severe allergies, nor any emergency training for its staff, but our school principal made us feel as if we were simply overprotective parents and that our child would need to start adapting to the ‘real world’. We were dumbfounded and our apprehension level went straight through the roof.
Unfortunately, we were not the only parents dealing with similar circumstances. Over the years, I have met a number of parents throughout New Brunswick who have encountered very similar situations with school administrators.
Luckily, our daughter's Kindergarten teacher, while very nervous about the severity of her peanut allergy, was quite understanding and offered to do all she could to ensure that her class was ‘peanut safe’. In fact, she quickly became a resource person for all other staff members who also taught children with severe allergies. She gladly accepted when we offered to sit down with her and explain Nathalie's allergy, its symptoms and how to deal with an anaphylactic reaction. What Linda undertook over the next few days has now become standard practice at our elementary school.
Two days before the start of the school year, we met Linda in her classroom for our ‘training session’. I can still remember how frightened she was at the prospect of having to inject one of her students with a needle. After talking for a good hour-and-a-half, answering all her questions and using a trainer to demonstrate the use of the EpiPen®, Linda confidently indicated that she felt much more at ease and would have no problem in administering the EpiPen®, calling 911 and then contacting us in the event of an emergency.
Within days, she had asked Nathalie to tell her classmates about her allergy. That evening, many of her intrigued classmates went home and nervously told their parents all about the little girl in their class ‘who could die if she ate peanuts’. Nathalie's short description of her allergy had a long lasting and profound effect on her classmates as they would routinely inform teachers when they spotted a child in the playground who had any snack that even resembled peanuts.
Linda also took steps to inform all of the parents in her class about Nathalie's allergy, gave us an opportunity to make a short presentation during the first parent night and personally manufactured ‘No peanut’ signs and posted them at both doors to her classroom. She also installed a hook right beside one of her classroom doors so our daughter could hang her ‘Epipouch’ and would remind her to put it on when she left the classroom for lunch.
Whenever there was a special event or birthday in the classroom, she routinely called us at home to tell us about the menu or what parents were intending to bring into the classroom and would also ask the parents to bring along the ingredient list. Linda was simply a godsend and made our entry into the school system much easier.
However, dealing with the principal, the school board and the Department of Education proved to be much more challenging. For whatever reason, our school principal did not see it as her responsibility to ‘police’ what other children brought into the cafeteria. She would routinely inform us that ‘we can't ensure a peanut free environment’ or ‘your child has to become more responsible’ at which point our frustration level would rise considerably. It even came to a point where we felt unwelcome in our child's school.
After a number of phone calls to the school district and the Department of Education to enquire personally about guidelines that could help individual schools deal with children with severe allergies, we were informed that guidelines did in fact exist, but that they were left to the schools to administer. That's when I knew that the current situation had to change and concerted effort and pressure was needed to effect change in our school and ultimately in the provincial school system so that parents and their children would not have to go through what we were experiencing.
More Web searching led me to the Allergy/Asthma Information Association site and a phone number for Gloria Shanks, the long-time Atlantic Regional Coordinator. We had hit pay dirt! Gloria not only informed us on actions that had already been undertaken to draft a province-wide school policy to deal with severe allergies, but she also encouraged us to press ahead with our very legitimate requests from our principal and school district. I quickly became an advocate for AAIA and eventually worked with Gloria and the Department of Education in the formulation of Policy #704.
With the existing Department of Education's guidelines in hand, our first school year was filled with little victories. After much pushing and prodding, the principal ‘allowed’ us to post Nathalie's picture in the staff room with an explanation about her allergy and what to do in an emergency. By the end of the year, this area was populated by other student photos and explanatory notes from parents whose children had similar allergies or severe medical conditions. Staff members were at least aware of which children to keep a watch on, especially when supervising the cafeteria, and were also aware that additional EpiPens® were stored in an unlocked area of the school's infirmary. Under the new Policy, this is now standard procedure.
Within a few weeks and after more pushing and prodding from parents of the four children in our school who had severe allergies to peanut, nut and milk protein, a letter was forwarded by the school board to all parents in our school informing them that some students were severely allergic to peanuts and other nut products which could lead to anaphylactic shock and even death, and urged parents to ensure that their children's lunch boxes did not contain products that could trigger an allergic reaction. While specific measures were instituted in the school cafeteria to protect severely allergic children, the day-to-day enforcement of products brought to school was left to the school administrator, who unfortunately refused to take any responsibility. Under Policy #704, these are now standard procedures.
As for the cafeteria, they did what they could to limit the amount of products labeled ‘may contain traces of nuts or peanuts’. However, the main supplier for all schools in our district was the next stop on our mission.
It has taken considerable effort and time to bring us to where we are today with a recently revised Policy #704 — a situation where most parents would feel comfortable that the New Brunswick school system is doing what it can to protect all of its students, including those with severe allergies.
As the old saying goes, Rome was not built in a day.
from Allergy & Asthma News, Issue 3 2005