Dare to be “Different”

Tziri Frank

Once upon a time, a long time ago, in a world where the “normal” (average) price of gas never went above the two-dollar mark, there lived a conventional (“normal”) young prince. This was a happy young prince who was “normally” (usually) full of smiles and sunshine and singing. And why not? This was a prince who led a charmed life, where his every whim was catered to, and his every need was met before he could even realize that there was something he lacked. And he “normally” (ordinarily) never had cavities when the royal dentist checked him out. And he regularly (“normally”) got a perfect score on his Gameboy, and he never needed to sit detention in school for unexcused absences. And so this young prince grew. And he thought that this was how all-young boys lived. And he assumed that this kind of life was the “norm” (typical). And he took it for granted that “everybody” lived this way.

Until one day, when he was walking in the Royal Mall admiring the End of the Season Sales that tempted shoppers to part with their hard earned dollars in exchange for items that they did not need and within weeks would be deemed “old-fashioned”. And as the prince was deciding if he wanted to fight the crowds clustered around the Opening Day End of Season Sales at Electronics ‘R Us, or peruse the Just Reduced 70% Off plus an additional 15% on top of the red dot Extra 10% Clearance rack of Macy’s, he saw an ab”normal” (odd) sight.

There in front of him was a boy, who sat in a funny looking chair with large wheels on either side, patiently waiting for his chance to enter Legoland.

“Why do you sit in such a funny chair?” boomed the prince who was not normally (naturally) shy. “And why do you not stand up to bow down before me, the royal prince, as is the “norm” (customary behavior)?”

“I….uh…..” stammered the young boy in horrified surprise, clearly unsure how to explain that he was just going to the mall and doing things the way he “normally” (routinely) did.

Suddenly the Royal Attendants, who had been completely transfixed by the squawking on their walkie-talkies, which was common (“normal”) behavior for them, realized what was going on. They quickly intervened, whispering loudly in the prince’s ear about things like wheelchairs, and handicaps, and being politically correct by never ever acknowledging the obvious differences between the “normal” (standard) behaviors of two physically and/or culturally divided groups.

And the young prince, who was really a good kid at heart, listened. And he learned. And he never again made the mistake of expecting “normal” (habitual) behavior from someone who did not move, or speak, or act in the ways that so many people take for granted.

And he lived happily ever after. And he was always polite and respectful when he encountered physically and mentally handicapped people at the mall.

But here in the real world, do we always make allowances for individuals who do not act or respond to events in the way that society has deemed “normal” (acceptable)? And how often do we act in ways that throw others off-guard, and leave them pondering the state of our own “normality” (awareness)?

As a mother of a special needs child, Yossi, I myself have been on the receiving end of those quizzical stares, and questioning expressions of individuals who have often been left confused when I did not act, or react to situations in a way that was (accepted as) “the norm”.

Sometimes those reactions come from the very people who should know you better than to expect normal behavior from you. Like my own extended family.

I learned this the hard way, when my husband, Yossi, and I all went to spend a Yom Tov at my mother’s house.   Early on the first day of Yom Tov, I cautiously opened one eye when I heard two year old, mentally and physically handicapped Yossi making a very odd cry.

At first I couldn’t spot him. It was only after I flung clothing, shoes, accessories, and empty bags of potato chips in all directions that I discovered that Yossi had rolled off the low futon he had been sleeping on, and was presently sprawled out on the floor, where he was unable to move himself.

“Ahhh!” I shrieked in shocked delight, “Yossi, you rolled over!!”

At this my husband woke up and promptly began adding to the joyous exclamations. This only made Yossi howl louder. Within seconds every member of the house was awake, and in our room.

“I thought you said he doesn’t roll over,” said my mother nervously horrified that she had listened to me when I said Yossi could sleep anywhere, because with his mental and physical handicaps he would not move unless I moved him, “why would you be so happy that he is now sprawled out on the floor?”

“I thought you said Yossi sleeps late in the morning,” grumbled my sister, rubbing her eyes sleepily, “there is no reason to be this happy this early in the morning.

“I thought you were a good mother,” said my other sister grumpily, “I don’t think jumping for joy because your son has rolled onto the floor in his sleep qualifies as “normal” (acceptable first thing in the morning) good mother behavior.”

And she was probably right. But nothing could dim the joy of seeing my severely disabled son do something so “normal”. But, I did learn to act more typically. I also learned to stay home for Yom Tov.

But the first time I realized that I should have better control over seemingly “normal” (socially acceptable) reactions was when Yossi, was less than a year old. Over one very long Shabbos I realized that he was not acting the way that he should. By that point in time, I was already well educated in the field of neurosurgery and seizure activity, and I was able to deduce that he was not in a critically ill situation. But, he was definitely not well enough to be classified “normal” (healthy), either. As soon as Shabbos was over, I called the local emergency pediatric hotline.

“Can I help you,” came the rushed tones of clearly harried receptionist, though it was still only just after the early zman, “what are your child’s symptoms?”

“Well, judging from the focus of his pupils, I would say the shunt is working fine,” I began, “and I’ve checked his extremities and surmised that there is no seizure activity at this time.”

“Excuse me?” came the clearly puzzled tones of the Keeper of Doctors Schedule, “is this a doctor’s office I’m speaking to? Please don’t tie up this line, we need to keep it open for those parents of a sick child who must see a physician tonight!”

“I am the mother of a child who is sick,” I explained, “and I think I need to see a doctor right away, but you did ask me about symptoms, and well …..”

“…Does your child have fever, cough, runny nose? Is he pulling on his ear, or throwing up? Has he developed a rash or funny looking spots anywhere on his body?” came the loud and slow tones we all use when talking to someone who clearly is not capable of understanding the “normal” (typical) things in life.

“Yes!” I said enthusiastically, feeling very validated, “yes, that’s exactly what he is doing!”

“Well, if he’s doing all of that at the same time, you better get right in here,” said the Mistress of the Medical Moments, “you have an appointment in ten minutes.”

And a mere fifteen minutes later, I found myself in the Pediatrician on Duty for the Night’s office where the medical professional was carefully using all the equipment at his disposal to evaluate my son. Judging by the frown on his face, he was not happy with what he was finding.

“How bad is it?” I asked, already planning the quickest route to the local Children’s Hospital.

“Well,” said the doctor gravely as he took a deep breath and released it with a heavy sigh, “I’m afraid your son has an ear infection.”

My mouth dropped open in surprise. Ear infection? All Yossi had was an ear infection?

“It’s all right, don’t panic,” soothed the doctor clearly misinterpreting my shock, “with a little antibiotics, he will be fine. Really! I assure you, I see this all the time.”

But, by then, I had turned to Yossi to scoop him up in hug where I was could shower him with hugs and kisses.

“Yes!” I shouted in joy, “Yossi, all you have is an ear infection! I’m so proud of you, you are such a good boy!”

And I turned around to discover looks of stunned horror as all the medical personnel in the office stood in a circle to watch my odd reaction to the diagnosis. Clearly this was not the “normal” (usual) reaction most (“normal”) parents had when receiving word that their child was in need of antibiotics to treat a painful contagion.

“Do you need me to explain what an ear infection is?” asked the doctor backing carefully away from me, in case whatever I had was contagious.

“Do you need me to get you some valium?” asked the nurse looking at me as if I were a rare lab specimen.

“Do you need to talk about this?” asked what I presumed was a social worker, thumbing frantically through a pamphlet labeled How to Deal With Parents Who Don’t React The Way They Should To Medical Diagnosis.

The rest of the medical personnel just continued to gaze at me and Yossi, their eyes round with confusion, their expressions clearly ones of shock at what they had just heard.

And I didn’t bother to explain, because how could I tell these people about the utter relief it was to have to deal with such a “normal” (ordinary) childhood illness. How do you convey the relief of discovering that this crisis is ordinary, regular, and compared to everything else that comes your way, very very manageable?

The answer is, you don’t.

You just learn to “Dare to be Different (Normal)!”