Involve Me and I Learn


“You are a monster!” yelled a six year old boy loudly, pointing to our son who was in 1st grade at the time.  His words stung so deeply, they felt to Ethan like a sharp razor cutting deeply into an open wound.  The air in the pool room was damp and humid, yet the unexpected outburst left our own six-year old with a chill so cold his hair stood on end.  It was the middle of winter 2009, and my husband John and I had signed Ethan up for swimming lessons at our local Y.  In that moment, Ethan looked at the other child, who continued to point at him, and burst into tears.  “I want to go home, Joan,” he told our nanny.  As a working mom, I couldn’t always take Ethan to his after school lessons.  I happened to be off this day, but had chosen to stay home with our two younger children while Joan took Ethan to the pool.  Ethan approached Joan, requesting his towel and motioning he wanted to leave.  Joan had been sitting in the back of the bleachers at the other end of the pool and hadn’t heard the exchange.    Instead, she interpreted Ethan’s actions as him being scared to go back into the water.  Nevertheless, the lesson was almost over anyway, so she succumbed to his insistence that they leave.

The odd thing about the encounter was that the boys were actually laughing and joking together at the beginning of the swim lesson.  There they were, two young boys bantering back and forth, laughing as another girl in the class wore her goggles upside down.  And then he noticed.  And then they all noticed.

About us

Ethan and his younger brother Charlie were both born with a genetic condition called ectrodactyly.  The term literally means “missing digits.”  The condition manifests itself similarly, but not necessarily identically, on different people, even those in the same family.  Ethan has one finger on each hand, and two toes on each foot.  Charlie has two fingers on each hand and two toes on each foot.  Our daughter Savanna does not have the condition.

Being the middle of winter, it was already dark outside as Joan and Ethan drove home from the Y.  Ethan sat in his car seat and was extremely quiet.  This was quite unusual for our extremely social and loquacious son.  Having worked with us since Ethan was an infant, Joan knew something was up.  She later told me it felt that despite the heated car, it felt like the atmosphere inside was chilly.  As she glanced in the rearview mirror, Joan noticed Ethan’s tears now trickling down his pale, freckled skin.  She stopped the car so they could talk.  Ethan shared with her the boy’s cruel words.  She then called to prepare me since I was waiting at home, unaware of his fragile state.

Mama Bear Syndrome

As they arrived, Ethan ran straight into my arms.  “Mommy, I don’t want to go back to that place.  I never want to swim again.”  As he recanted the full story to me, I held him close, and several thoughts occurred to me.  First—that I never wanted to let him go; if only a mother’s hug could solve every problem a child encounters and make the bad go away.  Second—that, as inappropriate and counterproductive as this was, I felt hatred towards the other child for being so mean to my precious Ethan.  I wrestled with those feelings of anger because I also understood that, in retrospect, that child was probably less mean and more afraid of what he saw in Ethan.  Lastly, my mind drifted to my own childhood.   The first of my family to be born with ectrodactyly, I have a total of four digits on my hands and feet.  To complicate matters, I was also born with shortened forearms, so it doesn’t take long for people to notice how different I look.

I knew these kinds of moments were coming.  I had already experienced other encounters of children staring at my children, and certainly I knew what felt like a lifetime of stares in my own direction. I get it–curiosity is natural.  I welcome the questions, because it gives us an opportunity to explain why we were born like this (simply that we were born like this), and move on!  Yet, this outburst felt cruel beyond even my own experience.   I had hoped that their little lives (as well as our daughter Savanna’s) could still be filled with fantasy-like happiness, where people of all ages reserved judgment.   But this encounter was particularly raw.   Already a Star Wars aficionado and avid moviegoer, Ethan knew what a monster was.

During the Seventies, kids were curious at my odd-shaped hands and feet no doubt, but were they cruel? I cannot remember, but I don’t think so.   But if not, why not?   My mind drifted again.  In recent years the Style Network aired a show on a beautiful woman named Ruby Gettinger who became its Reality Star.  She was gorgeous, but her weight was at its peak over 700 pounds.  On one episode she mentioned that she had absolutely no recollection of her childhood.  Ruby acknowledged that her childhood memory loss was most likely caused by childhood traumas.  Did I just not recall any significant confrontations due to my own childhood traumas?  I knew otherwise.  My own childhood was filled with two incredible parents, and two supportive and devoted brothers (none of whom shared my condition).  There was no secret trauma in my life—I was sure of it.  As my mind searched for the right words of comfort for Ethan, I thought about the type of child I was.  I was certain these memories could somehow provide both Ethan and Charlie with the tools they would need to build their own confidence, even self-acceptance, given their physical uniqueness.  There are many that have a “difference” and like me, have worked through the stares, the insensitive comments, judgments and assumptions.  Despite the challenges, they are confident, successful adults.  Some even go on to become inspirational speakers.  My challenge used to be only about accepting myself, gaining a sense of dignity that does not readily exist in a young child who is born looking so different from the majority.  I now needed to guide my own children into also accepting themselves.  The irony was that my own self acceptance did not fully emerge until I gave birth to my difference.

Memories from my Mother

Fortunately, my mother kept a journal of me when I was around the age of three or four.   The journal helped me understand and appreciate that, despite my memory, there were in fact some kids that may have indeed been mean, or at least hostile when they met me for the first time.  Yet somehow I learned how to win them over.  Crying was not an option for me.

Fall 1973:   “Meg first became aware of her physical difference at age 2 ½ , and even more so at age 3, when she entered a fairly verbal nursery school class.  The kids questioned her and she questioned us.  We told her that she had one finger because she was born with one finger.  Meg seemed to accept it.  But then there was the day she started whining in frustration that she wanted five fingers.  I told her that people can’t always get what they want, and she stopped.  

There were repeated questions on her part and just as many assurances on ours.  But from the beginning, whatever inner questions she had herself, she handled the other children’s marvelously.  Sometimes the kids acted hostilely, for there is fear for their own possible loss upon seeing hers.  However, hostility she transformed into friendship.   One of her techniques was to simply drown out their questions.  She always had a big mouth.  I recall once being annoyed at the many “whys?” on every subject and decided to subject her to the same line of questioning.  She answered all of my incessant whys. It was I who had to stop, fatigued.  And she was just three. 

When one child in our carpool said to her, “I have TEN fingers, one, two, three, four ….” She simply smothered him with a little nonsensical song about noses, which she made up on the spot.  And when later, after she had won him, he again asked her why she only had one finger (even good friends who play with her all the time are occasionally taken aback and ask again).  She told him, “I told you that, silly” and went on to some other childish prattle. 

Reacting to the Unexpected

As my shirt became damp from Ethan’s tears, Charlie, around three at the time, and Savanna, still a toddler, walked in to the room.  Joan had gone home for the day, and John had not yet returned from work.     Taking a deep breath, I let go of Ethan and stood up.  “Honey, I want to talk more about that kid at your swim lesson.”  “I told you I am not going back there, Mommy.  If I don’t go back, he can’t make fun of me anymore.”   As my two younger children played together on the floor, the conversation was clearly going over their heads.  I took Ethan by the hand, and as we held our two fingers together, I looked at him with conviction.  “Here is what I think Ethan.  This kid has never seen anyone like you.  Many things that are different can at first seem scary since we are unfamiliar with them.  Even you have that reaction to unexpected things.  As long as you stay away from this boy, you will be a stranger to him and he is almost certain to continue with his comments.  Also, you must realize that even if you avoid this kid, I can guarantee there will be another, so we have to figure out how to deal with this type of thing together.”  Ethan listened intently, still holding my finger in his.  “I think that you go back to next week’s lesson, and continue to talk to him and even try laughing with him as you did.  Instead of being a stranger, continue just making yourself another kid, even a friend.”  “But Mommy, I am not just another kid, I look different, and he called me a monster because of it!”  With that the tears began to pour uncontrollably out from Ethan’s wide bluish green eyes.   I sat down.  “Ethan, here is the deal.  There is nothing you can do to control what that boy says to you, and how he might think of you.  The more you get to know him, the greater chance he will be reminded of the fun boy he enjoyed laughing with before he noticed your hands and feet.”  Ethan’s face began to lighten, ever so slightly. As I continued to try and comfort Ethan with my words, I reflected on an old saying I had heard written by Benjamin Franklin. “Tell me and I forget.  Teach me and I remember.  Involve me and I learn.”

The Importance of Role-Playing

“Ethan, let’s get up and now I want you to pretend that you are the kid that called you a monster and I will be you.”  At first there was hesitation, but a smile overcame his sadness and all of a sudden Ethan yelled “Monster!!!!” at me.  I was startled by the strength of his voice.  As I looked back at Ethan, pretending to be him, I was overcome with an inner peace.  “I don’t care what you think about me!” I yelled back.  Charlie and Savanna at first were startled by our outburst, but then began to join in yelling out loud with us, “I don’t care what you think about me!” they shouted.   “You look weird—look at your two fingers!”  Ethan once again expressed in a loud voice to me.  I turned to look at him with a confident gaze, “Why should I care what you think? You don’t even know me.  Whatever!” I returned in a loud shout, once again repeating the words, “I don’t care what you think about me!”  This exchange went on and on, until the four of us were tired out, piled on the family room couch laughing together.   As John arrived home from work, he entered the room and looked in my direction with a face that read, “What in the world is going on here?”

The next week Ethan went back to his swim lesson, a bit nervous but feeling a new sense of confidence.  This time I joined him and whispered in his ear, “I don’t care what you think about me!”  He turned to me with a warm smile that melted my heart.  Oddly (and admittedly with disappointment on my part but most likely some relief on Ethan’s), the other child did not show for the next lesson, or ever again.  That day I wished Ethan had had the opportunity to confront the boy.  However, I later started to realize that was no longer the point, because there would be others, and he would surely have his opportunity.  Through the experience and by role-playing with me, Ethan had already learned several invaluable lessons.  Befriending children (ok, and sometimes literally drowning them out with my stories) so they would not make fun of me, was my way as a child to overcome the questions and stares, even the hostility.  For Ethan, he had learned from me and John that kids tend to make fun of strangers, not true friends.   He could not control what another child thought of him, and trying to do so was pointless.  And, what the other kid thought of him should not be of importance to him.  Just because another kid had something mean or insensitive to say to Ethan, did not mean that he had to believe what they were saying to him.  This was a hard lesson to learn for any adult, never-mind a six-year old.  I knew this lesson would not be his last, and others would surely taunt, but I still felt grateful Ethan had already taken his own meaningful steps in the direction toward self-acceptance.

Meg R. Zucker

(April, 2011)

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