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Friday, December 4, 2009

Finding the Line (August 2006)

As parents of food allergic children, we are constantly challenged ot find the line between safety for our child and respect for the "rights" of the non-allergic community around us.

Sometimes in this quest, we are truly misunderstood. We have been called "overprotective" and even "hypochondriacs."

On Slate.com (featured on MSN's home page), author Emily Bazelon says that it is increasingly difficult to discern the "rationally neurotic parent with the extremely allergic kid" from the "crazy neurotic parent with the slightly allergic child."

As much as I hate to admit it, she may have a point; parents of food allergic kids sometimes exaggerate risk.

Why does this happen? A raging case of Munchausen-Byproxy? Probably not. A raging case of fear? Probably so.

When food allergic parents let fear win -- we all lose.

I am a big proponent of respecting diferent families' comfort levels. Because allergies and related response are so individualized, families have a range of experiences. Those experiences shape how those fmailies move forward into this world.

However, I am genuinely worried about "The-Boy-Who-Cried-Wolf Syndrome." I am worried that people may start to tuen out the message becuase the threat fails to materialize.

There are some very real ways that we, as the food allergic community, can help prevent this from happeneing.

We can push our doctors for answers and for recommentations that are not overbroad. We can ask them for their professional assessment of risk, and then ask for realistic guidelines for keeping our children safe.

We can push for, and financially support, research on food allergies. Many times the allergies tsimply don't have the answers to give us because the research just isn't there.

The Food Allergy Project, Inc. is actively workign to increase the federal resources dedicated to food allergy research. It is also working to fund scientific studies that will elad to a cure for food allergy.

We can continue to push manufacturing to provide us with the best possible information about the way food items are made. I fear that some companies may be using the "may contain" and "made in a factory..." verbiage to protect themselves, rather than offer accurate information to the food allergic community.

As parents of food allergic children, we alos have a role in helping people to learn to accomodate our children's needs. We can determine the approach that is "least restrictive" for everyone involved.

For example, we have had our peanut allergic child sitting in the same room with another child eating a peanut butter sandwich and have not had any inkling of a reaction. Research supports that this would be true for most of you as well.

Because the risk of reaction from another child eating peanut butter in the vicinity of our child is really low, our family is comfortable with a peanut-free table in the cafeteria and a peanut-free classroom, but we do not feel that the school needs to be peanut-free in and of itself.

Additionally, as responsible parents, we need to be sure of our children's reactions to various allergens.

Our son was once "tactile allergic" to dairy, meaning that he would devleop hives wherever milk had touched him. He has, however, outgrown this -- although he is anaphylactic to dairy. Therefore we are comfortable with other children eating dairy around him (provided that any spills of milk AND any messy children are cleaned up appropriately afterwards).

So this leads to my second point of asking of others for what you REALLY need. It is important that we aren't "overbroad" with our requests. It is easy to play "what if" (a game every parent plays to some degree).

A more productive strategy than playing What If would be to teach our food allergic children to wash their hands often throughout the day. This is also very non-restrictive on their classmates, and in fact, good hygeine for all to follow.

We may strive for the safest environment possible, but even if our children didn't have allergies we still couldn't safeguard them 100 %. It just isn't possible and is an inherent factor of life.

Another thing we can do to find the line is to remove emotion from the issue of allergies (easier said than done, I know).

We may feel like allergies aren't fair -- and they aren't-- but the bottom line is that,"life isn't fair." Allergies may be our burden, but every family carries their own burden (addictions, learning disabilities, dysfunctional relationships).

I know I sometimes catch myself saying, "well if Ben can't have ice cream at the ice cream party, they shouldn't be having an ice cream party." Instead of asking for the party to be changed from an ice cream party to something else, perhaps an alternative solution is to offer to provide soy ice cream and dedicated utensils for the party.

We need to be careful not to project our own feelings of injustice onto our children. We can allow them to vocalize their true feelings without us directing how we think they should be feeling.

With the help of doctors, researchers, manufacturers and each other, it is my sincere hope that we can continue to educate the community at-large about allergies and the challenges of living with allergies.

Part of that education must include that fear goes hand-in-hand with allergies, but we are working on not letting fear influence the accommodations that we request for our children.

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