Andrea is our local analphylaxis support group leader. She also provides coaching to allergic individuals and for parents helping their children navigate life with food allergies. I’ve asked her to share her opinions with us about the perceptions of others regarding parents of food allergic children, which seems to be quite a hot topic lately.
Please let us know your thoughts too!
Bio: Andrea Shainblum is the President/CEO of Allercom Allergy Consulting, Inc.
Allercom helps hotels, restaurants, event planners, hospitals, schools, daycares, and camps reduce and manage allergy risk. In addition, Andrea volunteers her time as the leader of the Montreal Anaphylaxis Support Group, which she founded in 2003.
Five Things Parents of Allergic Children Want You to Know
You’ve read about these topics in the news.
“Anxious allergy moms”
Most recently, there have been studies suggesting that positive skin scratch test results to allergens are not sufficient to diagnose allergies, and that many are false positives.
All of the above have been widely filtered through, and propagated on the internet — particularly on blogs and social media sites. The studies suggesting the gap between positive allergy skin scratch tests and clinical symptoms have been used to fuel public critiques of measures taken to protect allergic children. And it seems, if you’ll pardon the pun, that nobody is immune; a well-intentioned relative, who shall remain nameless, e-mailed me when one of the studies was released, to inform me that my allergies were probably not real after all.
How lovely that would be.
As an allergy support group leader, coach and consultant, I often encounter the negative effects of these faulty interpretations – from the parent dismissed as demanding by relatives who insist on serving nuts during the holidays, to the friend who claims that minimizing stress or trying the latest diet fad will make the allergies vanish.
In fact, the reality is far more complex. What the studies are telling us is no surprise at all to those with allergies. Allergists and allergy support group leaders are well aware that a positive skin or blood test must be correlated with a clinical history of reactions in order to diagnose an actual, honest to goodness allergy. In the case of food allergies, the gold standard is a food challenge carefully performed by a licensed allergist. Otherwise, allergists run the risk of over-diagnosing based on false positives. Simply put, this is not news. The newer studies simply reiterate the importance of confirming positive test results with follow-up testing and/or a full history taken by an allergist.
The claims of “allergy hysteria” and anxiety aimed squarely at the parents of allergic children are even more insidious – not only because they’re based on misinterpretations, but because there’s no way for parents to combat the claims without sounding upset and, well, anxious. And who wouldn’t be upset on being told that their child’s documented deadly allergy is overblown, or worse, all in their heads?
Parents of children who have equally invisible and severe conditions, such as diabetes or learning disabilities, are generally speaking, not met with public hostility. However, for some reason, allergy has become a targeted condition. I can’t fathom why this is the case, but as an adult who has lived with allergies since childhood, and who consults with those who live with and try to accommodate allergies, I do know how these misinterpretations negatively impact allergy sufferers and those who care for them. With this in mind, I’ve prepared a list of five key concerns and messages that many of the parents of allergic children I’ve known often express, in response to some of the critiques floating out there on the interwebs:
1. So, you believe that I’m putting my little princess up on a pedestal and asking for special treatment when I request that eggs not be brought to school. It’s helicopter parenting, you say? Well, there’s a back-story here. It involves a night spent in the emergency room watching my child being resuscitated after turning blue and swelling up to the point of unrecognizability due to anaphylaxis. The cause? A single, tiny bite of another child’s egg sandwich.
2. Ah. But you still don’t believe that my child’s allergy is that severe. Surely, I must be exaggerating, or perhaps even making it up? Well, that’s not your call to make; it’s that of the allergist, based on my child’s test results and clinical history. Unless you’re willing to shadow my child at school and both witness and treat a life-threatening allergic reaction by injecting epinephrine, please don’t judge.
3. Oh – you do believe that my child’s allergy is severe. Well, that’s a relief. But what, you say? You don’t believe that schools should pander to the special needs of the minority? Oh. Really? I’m afraid we’re entering Star Trek territory here – as in Spock’s Vulcan adage “The needs of the many outweigh the needs of the few or the one.” Let’s look at this, shall we? Put into effect, what this means is that special accommodations need not be made in schools, or indeed, in society. (School being a training ground for adult life after all) I wonder — would you protest against wheelchair ramps? Individual Educational Plans (IEPs) for students with dyslexia or math LDs? Why, then, protest against accommodations needed to keep severely allergic kids safer? Empathy is arguably the root of a functioning, kind society. How about modeling compassion by explaining to your child that this is one way to help take care of others? A far better message to convey to children in this era of rampant entitlement, don’t you think?
4. It’s an inconvenience to your child, and to the other children who love their peanut butter and jelly sandwiches? I see. Well, it’s clear that peanut butter is a cheap and convenient food that kids love to eat, and that not being able to send it to school is an inconvenience. That said, I’m not trying to inconvenience you or your child; I’m doing something more elemental and urgent – trying to ensure that my child returns home at the end of the day. Put yourself in my shoes. Since my allergic child is required by law to attend school, I’m going to do all I can to ensure his safety, and I expect the educational system that enforces his school attendance to help me do so. If the allergy is to trace amounts, I expect that the allergen will not be served in order to avoid an allergic emergency. Not taking these measures is tantamount to relegating my child’s well-being to the whims of fate. Unless, that is, you expect parents of all food-allergic students – 6-8% of all children in North America – to home-school.
5. Food allergen bans promote “a false sense of security” or “don’t teach kids to deal with the real world.” I left my favorite clichés for last. The term “ban” is admittedly a bit extreme; instead, many schools simply ask for parent cooperation, and monitor the lunchrooms. Whatever this measure is called, however, it’s one important way to reduce allergy risk in a school (or camp) setting. Note that I haven’t said “eliminate allergy risk” – that’s not possible. But given the fact that small children put their hands in their mouths, and that even older children and teenagers tend to take risks that adults do not, it’s incumbent upon schools to minimize allergy risk as much as possible. Because an environment where the allergen isn’t served is less likely to be covered in the stuff, right? As for the real world, I have yet to meet a parent who hasn’t taught their allergic child to manage their allergy or to prepare to manage it as an adult. But in the interim, these kids need to stay safer so as to reach adulthood. Allergic reactions may still occur from time to time despite best efforts, but they’re likely to be fewer, and possibly less severe, if precautions are taken to minimize the risks.
It’s a stark reality that allergy prevalence is rising among children and adults alike. Until the cure for allergy is found, we will continue to be bombarded by studies of all kinds as allergy researchers continue their important work. Members of the public will also surely continue to express a range of opinions about allergy, its causes, its treatment, and its accommodations. However, for those with severe allergies, this is not a matter for debate; it’s one of life and death. Given this fact, what those with allergies most often wish for, in my experience, is the ability to minimize risk and live life to its fullest, whatever it takes. Sometimes this means depending on others to help, or at least, not hinder. After all, compassion and becoming better educated about allergies takes less time and effort than does posting critiques of allergy sufferers.
©2012 Andrea Shainblum