What NOT to Do When Your Child is Diagnosed with Food Allergies
A woman is like a tea bag - you can't tell how strong she is until you put her in hot water - Eleanor Roosevelt
Some events in life have such a tremendous impact that you view your life as "before" and "after" this life-changing occurrence. For some of us, that event was our child's diagnosis of life-threatening food allergies or anaphylaxis. Many of our kids were diagnosed after months or years of unexplained hives, wheezing, eczema and ear infections. For others, one bite of a peanut butter sandwich or a sip of milk changed life forever.
For years, I've been amazed at how parents, particularly mothers, integrate what needs to be done, and how sometimes this transition leaves them a stronger, and even happier person on the other side. These women seem to become more competent at dealing with life's blows, but also more mellow. From what I've seen, not all parents get there, at least not on every issue. So what's going on here?
I recently got some clarity on this issue from author, columnist and life coach Martha Beck Ph.D. I am thrilled to be training with Martha Beck and on a recent call, she explained the "Change Cycle" to us. I finally had a framework for understanding what goes on after a shocking diagnosis, and could see clearly how and why some parents got stuck. As the parent of a child with Down's syndrome, she knows how traumatic a child's diagnosis can be. [For more on the Change Cycle, read Finding Your Own North Star: Claiming the life you were meant to live.] I found her insights so valuable in understanding how much I had changed since my son's diagnosis. Let's see if you can identify where you are in the change cycle and if perhaps you might be a little gentler with yourself as you move through each part of it.
There are four squares in the change cycle. Square One is where the catalytic event hits. (i.e. diagnosis) Square Two happens when one begins to dream and scheme about a new ways of life even with the new diagnosis. Square Three is when we take action on our new ideas. This is where the real work occurs. And finally, Square Four is when we enjoy the fruits of our labor. We have acclimated to a new way of lifeIt helps tremendously just knowing that what you are going through is normal and what's more, that there are specific things you can do to support yourself and others through each stage. So let's take a look at each stage.
When a major change occurs in your life, you're in Square One of the change cycle. Boom: it hits! Your child has been diagnosed with life-threatening food allergies. The doctor explains "Your child must never be without an Epi-Pen. A bite or trace amount of the wrong food could be fatal!" Martha Beck calls this square "Death and Rebirth" In our case, it is the death of the spontaneous, carefree mom and the birth of the mom of a child with life-threatening food allergies or in simpler terms, the mom of a child with special medical needs.
Parents in Square One seek help and support but what they want even more is control and certainty. Initially, I believe that reasonable amounts of attempting to control the environment, or at least to make it as "safe" as possible, can be soothing, especially while absorbing the initial shock. If it is an act of self-care to decline invitations for awhile, or if you're just not up for taking a vacation that first year, then so be it.
The caveat is that if one controls too much, or attempts to control everything, the fear and uncertainty will persist. Because the truth is that we cannot really control life. So the goal in Square One is to grieve the loss (freedom, carefree life, ect) and then to accept uncertainty. As parents, we are obliged to protect our children but we cannot guarantee our children's safely in any endeavor. Accepting the uncertainty of life is not a substitute for "right action" or doing what is necessary to keep your child safe. It's more like adopting the serenity prayer or the "Goldilocks Principal". You seek a balance that is "just right."
How can you support someone in square one? Allow them to grieve. Sometimes really feeling the pain can bring more relief than slapping a happy face over the tears. I remember years ago I spoke with Emily Perl Kingsley who wrote the beautiful "Welcome to Holland" piece when her son was diagnosed with Down's syndrome. She told me that the thing to remember was validating the loss because "the loss of that dream is a very very significant loss" and often people push you to move past it before you are ready.
Sooner or later, most parents move through Square One into Square Two. Square Two is characterized by dreaming and scheming. At this point, you've truly acknowledged that the old life is gone forever. Here, parents have absorbed the initial shock and they wander how they will make the new life work.
I love to meet parents in Square Two because they're open to all of the different ways to integrate food allergies into their lives. Instead of focusing on fear and on everything their child may miss, they brainstorm about how they can participate. My friend Jill wanted to send her daughter to sleep away camp. None of the camp administrators had it together enough to convince Jill that they could accommodate her daughter's severe food allergies. So after entertaining a number of different options, this attorney-mom pitched herself as a "Food Allergy Coordinator" The end result is that the camp hired her and she will be there to educate the staff and ensure her daughter's safety this year! Those "outside the box" ideas are typical in the dreaming and scheming of Square Two.
Square Three is the "Hero's saga" and this is where the real work gets done. My friend Cybele came from a family who loved to cook and eat. They socialized and showed their love over delicious meals. When her son was born with multiple food allergies, she thought "What a horrible, horrible thing." After years of tinkering with second rate substitutes, she focused on all of the savory ingredients her son could have, and she started cooking again. It became a passion of hers, and her whole family's health improved! It occurred to her that she could write a cookbook with all of these new recipes. So after three years of testing recipes, she wrote and published her first cookbook. It took a lot of work, even more than she expected, but now she gets to enjoy the fruits of her labor in Square Four.
Square Four is the "promised land". This is where you get to reap what you've sown. I'm in Square Four with my son right now. He is safely settled into an allergy friendly school. He has several good friends whose parents are trained to avoid, recognize and treat allergic reactions. His symptoms are all under control and he is mostly compliant with our set of rules. All is well right now, and I get to sit back and enjoy it.
Still, I know that there are more change cycles to come. In a few years, he will turn 13, and I'll be facing a whole new change cycle with a food allergic teen. This time, I'll know what to expect, and I'll remind myself yet again that "This too shall pass."
Martha Beck's Model of Change