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Friday, December 4, 2009

Ben's going to camp; Am I crazy?

It's true. I am sending my six-year old, highly allergic son off to sleep away camp.

Now before you call in Child & Family Services, I need to clarify that he is going to sleep away camp with his grandfather. It's a "Grandparent & Me" camp.

It's a wonderful opportunity. Ben gets to experience sleep away camp, but I get to send a guardian angel with him. Ben is also blessed to have some one on one time with my dad, and my dad is blessed to get the time to spend with his oldest grandchild.

Although I know my dad will be with him to monitor the whole food allergy thing, I am still a bit of a nervous wreck.

There are a million "What if's" racing through my mind. I am trying to remember what camp is like, so I can anticipate any challenges that might arise, but it has been so long that I have even been associated with a camp, that I am not sure I can do a very good job predicting needs.

I am going to provide all the food for my dad and Ben. That's one thing I can control, and since it's only a three-day, two-night camp, it's a pretty realistic requirement.

Although Ben has multiple-life threatening food allergies, as well as other food allergies, I am pretty sure that the nervousness I am experiencing is a universal experience for ALL parents sending their first child off to camp.

And that though is actually pretty comforting to me.

Going to camp is an important rite of passage, and more importantly, it's a normal rite of passage.

As parents of food allergic children, we are always seeking how to balance safety with normalcy. It's a tough line to find. But it's important that we continue to challenge ourselves to let our children go and enable them to experience the "normalicies" of childhood.

So as parents of food allergic children, we must figure out how to navigate school, play dates, dining out, birthday parties, sleep-overs, summer day camps and yes, even sleep away camp.

You can prepare, prepare, prepare. But at some point, you also have to have a little faith.

You have to believe in other adult's abilities to listen and learn. You ahve to believe in yourself that you can let go. You have to believe in your child's ability to advocate for himself. But most of all you have to believe that the food allergies are not in charge of your child's life!

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.

When Allergies Overwhelm Us (October 2006)

Every now and then, I find myself crying in the most unusual places -- the refrigerated aisle of the grocery store, a fancy restaurant, and this month is was at the Parent Faculty Organization (PFO) meeting at my son's school.

Sometimes I feel so overwhelmed with Ben's allergies that seemingly innocuous tasks send me tumbling into Pityland. The task at hand that set off this latest round was taking a sneak peek at the calendar of coming school events.

Every event -- even movie night -- had food associated with it. Because of my son's extensive food allergies, it means every event must be navigated so that he can participate fully and safely.

It is exhausting. I am packing lunch every single day and fixing dinner every single night. Birthday parties always mean a call ahead of time, not just for RSVPing, but for grilling the family about what kind of food will and won't be served. Simple play dates with friends turn into min-lessons about allergies, reactions and medicines. Going off to school in the fall means hours of preparations, meetings and follow ups.

Just when I am knee-deep in pity (for myself and my son), I get a lifeline ... a wake up call ... some perspective.

Yes, our life is shaped by allergies, but overall it's a good life. My son is health and happy and pretty well-adjusted. He dances, plays soccer, fights with his sister and complains loudly at having to clean up.

Although there will be challenges as he grows up (what will dating bring?), he has the capability to be and do whatever he wants. We might always have to do a lot of prepartion for the "normal" things in life, but at least we have the means to be able to do those things. There are lot of conditions in life that would be more challenging and disabling. I just have to remember that.

Being part of this support group helps me to remember that. Because of my participation in POCHA there's always someone to call -- someone who listens to my current crisis and offers advice (when wanted). And there is always someone to help pull me out of Pityland.

Living with allergies has taught us a lot about advocating and educating others. It has taught us how to speak up, even when we're uncomfortable. It has taught us not to be afraid of being "difficult." It has taught us how to reach out to others and work towards accommodating all individuals, recognizing everybody's needs.

It's okay to experience pity for outselves or our children from time to time. It's okay to recognize that life can be hard and is not fair. But it's important for the entire family that pity is short-lived and recognized for what it is.

Pity can't be the overall operating mode -- or we let the allergies win. Instead, we have to work to make allergies just a small piece of who are children are. It doesnt -- and can't -- define them.