Perhaps it's never happened to your son or daughter. Maybe you do not know what I'm talking about. Or, for some of you, it happened a month ago at the bowling alley, or two weeks ago in art class, or yesterday at the drug store.
What is it? "The question:" "What happened to your ______?" Those of us with hand differences wear our strength and our vulnerability visibly - right out there for the whole world to see. I do not distinctly remember when I began to hide my special left hand from view by shoving it in my pocket. But I do recall from a very early age sensing that I was different from other children, and that my hand was what made me different. I figured that if I hid my hand, then you couldn't see it, and therefore no one would know about it. The big lie. In countless social situations (meeting kids my age in Girl Scouts, youth soccer, and summer camp), my peers noticed my other-ness instantly. Looking back, I realize that I was only fooling myself by concealing my hand.
But how can I explain all the times that people did not notice, even though my difference was glaring? My elementary school gym teacher, for example, who taught me in grades one through five, never noticed. My fourth-grade music teacher never noticed. Perhaps they didn't catch it because, ironically, in those circumstances, I didn't try to hide my hand. In sports and other activities, I was determined to try everything "normal" kids did. To participate successfully in sailing lessons, horse-back riding, photography, and leather-working class, my hand had to be out of my pocket.
Even with all of these activities, it took me many years of hiding before I could just let my hand be exposed to the world. I felt extremely uncomfortable and completely exposed when my hand was "out there" for everyone to see. Ultimately, I learned that it was the only way for me to grow into accepting myself. So my suggestion for parents is that you encourage your sons and daughters to empty their pockets and stop hiding their anomalous hands. People notice the difference anyway, and they ask questions. Give your child practice in responding to these awkward, sometimes offensive, and inevitable questions. Sit down with your child and role-play the situations, practicing appropriate and self-protective responses.
"My son's friends accept him exactly the way he is," you say? "Everyone loves our Joey, no matter what his hand, arm, leg ... looks like." Others' acceptance towards your son or daughter is the crux of my next suggestion. Encourage him or her to share with others. There comes a time for every kid when it gets too difficult and painful to run home crying to mom or dad after being asked "the question." When I was little, my mother always salved my hurt feelings and bruised self-confidence with love, kisses, and cuddly stuffed animals (I still have many of them). When someone would ask "the question" early in the school day, I would hold in the feelings of shame and embarrassment for hours, until I saw my mom later. Or when someone would ask "the question" the first night of a three day school trip, I would hold in the hurt for days.
As I got a bit older, I began to withhold from my mom how much it hurt when people asked me about my hand; I guess I thought that I was supposed to know how to handle the discomfort by myself. Instead of sharing with my closest friend, a trusted teacher, or my older brother, I withheld my feelings from others. I thought that "being strong" meant holding it all together. "I'll just be tough," I would tell myself, "They won't see me cry. I'm a big girl; I can handle this myself." Unfortunately, by not sharing, I buried many wounds inside, cutting words that went deep within.
Often, "the question" comes completely out of the blue, and there's no time to anticipate or plan a response. I'm standing at the counter at a convenience store, when the cashier casually asks (in the same tone of voice as if she were inquiring the time), "What happened to your hand?" Or, while I'm walking in the park, a stranger asks the same question. I'm asked a couple of times one month, then not for a year. It's strange. And after all of these years, I'm still often caught completely off-guard.
I have found that there are a number of ways to respond to "the question," depending on the circumstance, my relationship to the asker, and my confidence level at the moment. When I've felt really exposed and vulnerable, I have considered (but never actually dared) an angry or vindictive response, such as asking back, "What happened to your face?" Unfortunately, such answers rarely empower. A less retaliatory alternative employs humor to tactfully make light of the situation: "My hand? OH MY ... where did my fingers go?? I just had them! Can you please help me find them?" When I'm standing in a group, my inclination often is to avoid "the question" by changing the subject. I recognize, however, that it is healthier to answer directly and move on.
Sometimes I would ask back, "What do you mean by 'happened'?" To the quizzical looks, I share my spiritual outlook that G-d made me this way. When it seems appropriate, I take the opportunity to educate the inquirer with the most probable medical explanation of amniotic band syndrome. Sometimes a stranger will preface "the question" with: "Can I ask you a question?" If I think that he merely wants to know where I bought my shoes, I may answer "yes." But, in twenty-six years, only one question has ever followed that opener: you know, "the question." I have learned that sometimes I prefer not to share extremely personal information with people whom I do not know very well. In this context, for example, I might offer this stranger the opportunity to reconsider the propriety of his inquiry: "Well, that depends. Will it hurt?"
Just to reiterate, the important thing is to address the issue with your child, discuss strategies, and create winning solutions. The issue won't go away by itself, but you have a wonderful opportunity to help your child feel empowered. I'm certain that many of you have probably figured out a better response than any of these. I'd love to hear how you and your child have dealt with "the question." At a recent meeting of parents with children with hand anomalies, one mother recounted overhearing her four year old daughter's explanation of her missing hand to another four year old. To this day, it is still the most beautiful response I have heard: "When I was an angel in heaven, I had two hands, and another little girl had no hands. So I gave her one of mine."
©2004. Laura Faye Clubok, MS, OTR/L, On The Other Hand Therapy.
© 2004. Laura Faye Clubok, MS, OTR/L, On The Other Hand Therapy.
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