We have one, and it’s the greatest group of advocates our school district has ever had to increase education and awareness of food allergies, and to keep children with life-threatening food allergies safe at school.

Life Before the Task Force

Before our task force was created, each parent of a child with food allergies had to train the teacher and school administrators about food allergies and what accommodations would be necessary to keep their individual child safe. In a district of over 23,000 students, we had almost 300 students with food allergies in 2007. (That number is up to 600 today.)

Each school was trying to develop its own set of best practices, yet there was no systematic way to share information about successes and challenges from one school in the district to another. Each time a new student with food allergies showed up at a school, there was another reinvention of the wheel.

How the Task Force Came to Be

Some parents of children with food allergies became frustrated and sent letters and e-mails to the superintendent and school board, asking that a standard set of guidelines be developed to assist every school in our district to appropriately manage food allergies. Our school district, Academy District 20 in Colorado Springs, Colorado, formed a Food Allergy Task Force in response to these concerns. The school district’s superintendent supported and encouraged the group’s work.

Who’s Part of the Task Force?

Founding members included three principals (one from each level), five parents, a school nurse, the food services director, the district Section 504 coordinator, the director for legal relations and the chief operating officer. It was important to include all of these stakeholders to ensure that information was gathered to create complete guidelines for a child in the classroom, on the school bus and in the cafeteria – to name just a few. Since the group formed, others have joined, including a local physician specializing in treating children with severe allergies and asthma, three parents and two more school nurses.

Next: What the Task Force Does

The Food Allergy & Anaphylaxis Network led the lobby for FAAMA, which will result in voluntary allergy management guidelines for schools across the United States. FAAN started pressing for the legislation back in 2005, when it held the first of three Kids’ Congresses on Capitol Hill.

Allergic Living Editor Gwen Smith interviews Chris Weiss, FAAN’s vice president of Advocacy and Government Relations, about FAAMA and what the guidelines will mean for American students at risk of anaphylaxis.

Q&A: WHAT FAAMA WILL MEAN

Gwen Smith: First, congratulations on FAAMA’s passing – after all the hard work.
Chris Weiss: Thank you.

GS: There was a lot of delay with this bill. After 5 years of lobbying, how did FAAMA finally get passed?

CW: Senator [Christopher] Dodd from Connecticut, early in 2010, was able to insert FAAMA into the larger Food Safety Bill. The reason he did that – and it was very smart on his part – was because Congress was pretty busy last year and the chance of Congress considering FAAMA as a standalone bill became sort of unlikely.
The chance of Congress considering the Food Safety Bill, however, became probable. And so Dodd was able to insert FAAMA into the larger Food Safety Bill [officially known as the Food Safety Modernization Act].

GS: The food allergy community is excited by FAAMA’s success. But can you tell readers: What does this new law mean?

CW: It simply calls on the federal government to create food allergy management guidelines for the schools. This is a tremendous thing because, to date, there has been no guidance from the federal level at all on food allergies. A few states have published guidelines, some school districts have done so, some individual schools have done so. But there was nothing coming down from the federal level.

GS: And why is that so important Chris?

CW: Well basically because it gives any school in the U.S. – in any state, in any town, in any city – it gives them something to look to if they need help managing students with food allergies. In essence, we sort of killed 50 birds with one stone by passing this law. Any federal guidance [in the guidelines] would be applicable to all 50 states.

GS: Allergic Living is getting some specific questions such as: “But I live in New York state and there’s a law, or in Massachusetts, we already food allergy guidelines in the state. How will FAAMA work in conjunction with what’s already in place in those states?

CW: This is a good question. There are about 12 states that already have published food allergy management guidelines for schools. Roughly 12, give or take one. If you look at all of those documents, they’re essentially the same. They’re 99 per cent similar.
Whatever comes out of the federal government as a result of FAAMA will likely be similar to these existing state documents.
So it’s not as if the federal guidance will trump the state guidance. It’s not as if the state guidance will trump the federal guidance. Everything is going to be essentially the same content. [CW agrees that federal guidelines will be reinforcement for a state law.]

Next: The Guidelines, Getting to FAAMA

There is an expression that: “There are those who eat to live, and others who live to eat.” With the obesity rate soaring, clearly, North Americans fall into this latter group. We over-consume. Microwave technology and the accessibility of prepared foods have made it so easy to eat on the run, any time, anywhere.

Years ago, you did not see people wolfing down full meals in public transit; nor was there an excessive amount of food in schools. Treats, once an occasional indulgence, have become the norm with sweet drinks and snacks doled out after children’s sports activities (in my day, it was water and orange slices), and people noshing in their beds mindlessly while watching TV.

This trend to over-consuming has created challenges for families with food-allergic children, as well as for the school administrators responsible for reducing those kids’ risks of allergen exposure. Food has become central to school holiday celebrations, fundraisers and teacher rewards. Many people feel that things have gone too far, especially with the practice of parents sending in treats to celebrate their children’s birthdays in classrooms.

Pamela Lee, mother of a food-allergic son and a Vancouver educational assistant, points out on Allergicliving.com’s Forum that “schools should be a place of learning,” and that “birthday parties should be provided by parents, on the parents’ time, not the teachers’ time.”

While many schools are making greater efforts to encourage healthy eating, it will be a while before sweeping changes are made which result in less food in schools. In the meantime, parents should continue to advocate for safe environments, and do it in a positive way. Some advice from the trenches:

Ask for best efforts, not guarantees.
Perfection, such as asking for a guarantee, is not a goal anyone can achieve. Many parents demand that schools be “peanut-free” or “nut-free”. While a large number of elementary schools have restrictions on these foods, it’s not possible to “guarantee” that everything will be “free from” peanuts, nuts or other allergenic foods. The majority of other parents will make efforts to comply with food policies, especially if they are seen to be reasonable, but mistakes will happen from time to time.

Practice what you want to say.
Write down the three key points you want to discuss with the principal. This will keep you focused on what is most important. Role play with a friend who does not have a food-allergic child. Be sure this is someone who will give you an honest opinion and provide the perspective of those who do not live with food allergies. Your choice of words, tone and body language will all impact the way you come across to school officials.

Treat ignorance as an opportunity to educate.
Before a school meeting, offer to provide information about food allergies, such as DVDs or brief printed materials for review. When background is provided ahead of time about the potential severity of allergic reactions, this will allow more time for discussion. Remember that there will always be naysayers who make insensitive comments. You can’t change them, but you can change the way you react to them. Don’t let them get you down. As others come on board, the negative voices will be drowned out.

Create bridges, not walls.
When things are not going well, ask yourself: Could my own behaviour be part of the problem? A mother I knew had her husband speak with the principal, recognizing that her behaviour had created a barrier. He was able to break down the wall. Later, the mother was able to build a bridge through  changing the way she interacted with the principal – who started consulting her on the school’s anaphylaxis policy.

Similarly, at parent meetings, some have found it helpful to have a friend, whose child doesn’t have food allergies, present other reasons for reducing the amount of classroom food, from the mess to other health concerns such as obesity or diabetes.

The long and short is that the parents who can be brutally honest with themselves are the most likely to succeed at gaining protection for allergic students. They’ll also help to raise awareness of just how food-centred our schools have become.

While we’re being frank – we have all tripped in our desire to protect our loved ones; our anxiety can sometimes make us act inappropriately. What we need to do is learn from our mistakes. We should also celebrate the small wins, and take every occasion to say “thanks” where appropriate.

Laurie Harada is Executive Director of Anaphylaxis Canada, www.anaphylaxis.ca. For more information on schools and anaphylaxis, also see: www.allergysafecommunities.ca

I remember clearly the day that our first-born child, Julian, started junior kindergarten. It was 1998, and he was so proud to be going to “the big school”, carrying his new backpack and wearing the Elmo outfit that his grandmother had given him to mark this special occasion.

Me, I was ready to cry. Not just because JK represented a new milestone – my 4-year-old was growing up – but out of fear that he might have an allergic reaction at school.

Julian had been diagnosed with peanut allergy only six months earlier. My husband Victor and I were still getting used to the routine of reading food labels, preparing safe meals, and remembering to carry an epinephrine auto-injector everywhere.

Now, as our son moved out of our protective bubble and the watchful eyes of his babysitter, we had to advocate with more people to ensure that he would be protected at school where he would soon spend the better part of the day.

Our journey into the brave new school world began with registration. Victor and I met with the principal and the teacher to review some basic measures that would help to keep Julian safe.

Though we were reassured that the staff would do its best to safeguard our son, I continued to feel anxious every morning as I handed him over to his teacher, breathing a sigh of relief at noon when I was greeted by his smiling face at pick-up time. My son, meanwhile, loved his teacher and enjoyed his new friends and activities.

That first year was very difficult. Every time the phone rang I was afraid it was the school calling to say Julian had had a reaction.

Already stressed with the burden of trying to anticipate where food might pose a risk, my anxiety escalated when the mother of a peanut-allergic child said, in a judgmental tone: “I can’t believe you didn’t know peanut butter is often used as bait in mouse traps! Haven’t you asked the school to remove them?” What an irresponsible mother I was. How could I not know this?

As I added mouse traps to the growing list of what I thought to be high-risk situations, my own reality check began to set in. I started to question whether I was losing sleep over the wrong things. For instance, just how likely would it be for my 4-year-old to touch a mouse trap containing peanut butter and have a serious allergic reaction?

What seemed more productive than
stewing over “what-ifs” was minimizing
the risks at school.

I reminded myself of what his allergist had said: While anaphylaxis has the potential to cause death, fatalities are rare. What seemed more productive than stewing over “what-ifs” was minimizing the risks at school.

While casual exposure to peanut could be an issue, I realized that Julian’s chances of staying safe would increase if I focused more on two things. The first was conditioning him to follow key rules (no sharing food with others, always carry your auto-injector), and the second was getting the school to formalize its anaphylaxis plan, ensuring that staff were trained and that the school community was aware of the food policies.

I felt the school community would be willing to help as long as I asked for accommodations that were reasonable. To do this, I needed to calm down.

Victor and friends whose kids did not have food allergies acted as my sounding board on the school communications I drafted for the principal. With their feedback, I learned to write succinctly, and in a way that expressed the seriousness of anaphylaxis without scaring or turning people off with too much information.

My “reviewers” quickly pointed out where I needed to reconsider my expectations, reminding me that people would make mistakes; they would overlook things like “may contain” warnings on food labels as they weren’t accustomed to reading labels the way I did.

After Julian was not invited for a couple of play dates, and was un-invited to a birthday party, I learned the hard way that my explanation to other parents that “even trace amounts of peanut could be harmful” may have led to misunderstandings.

I had not put risks and precautions (such as having an auto-injector available) into context for them; I’d simply alarmed them. Some parents felt they could not keep Julian safe in their homes.

I realized how important it was to watch that my concerns would not scare people or douse Julian’s enthusiasm for the school experience. As he learned to take on more responsibility, and as the anaphylaxis policy became more entrenched, my anxiety lessened. Thanks to the support of the school community, Julian sailed through his elementary years and I came through with my sanity intact.

I must admit, though, that faced with the teen years (he’s now 14), my anxiety is peaking again. Anyone have any tips to calm down the anxious mother of a food-allergic teen?

Laurie Harada is the Executive Director of Anaphylaxis Canada.

Next: Working With the School