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The new shoes: learning to deal with reactions to a child with disabilities is a never-ending process.

"Claire, you have new shoes," my friend offered as she spoke to my daughter. But Claire will always have new shoes. This well-intended compliment tugged at my heartstrings. Even life's simplest comments carry different meanings because Claire's condition and appearance bring puzzling issues of etiquette to all of us who interact with her.

Claire came to us five years ago after a ridiculously normal pregnancy and delivery. Nearly a nine-pound baby, she seemed to follow in her older sister's footsteps. We were prepared to repeat the drill we had learned the hard way with child number one -- the first steps, the first words, the stitches in the chin and the admiring comments of friends and strangers alike about a new little girl.

But Claire brought us new challenges and took us into uncharted territory. The comments and glances from friends and strangers have been of a different sort. There would be no first steps, no first words and no stitches in the chin. Claire always has new shoes because she never leaves her pink wheelchair. The correct term for it is "safety travel chair," but to me that sounds like something the Von Trapp children used to cross the Austrian mountains in The Sound of Music.

The character of this chair is symbolic of the frightening challenges Claire must face. A glance at it makes you recall that you are scheduled for root canal work. You can almost hear the sound of the drill because of the chair's foreboding appearance. Occasionally, if the chair is in view in our entryway when my other children's friends come to the door, they cower as if they have mistakenly rung the Addams Family doorbell.

Like the chair, Claire's life is different. In all of us, she causes a hesitation, a pause, a reluctance to laugh because we're never sure if we're doing the "right" thing. I have often asked my mother for advice on handling chicken pox. But mothers aren't much help if you have a question about low muscle tone and resulting scoliosis or the problems of cortical blindness.

There was the time Claire's concerned teacher from preschool called to check on our sick dear and inquired, "When will little Claire be back on her feet?" We exchanged a chuckle and rejoiced at the precious moment Claire's individuality had given us as we worked with a unique child on her journey through life.

Other people's reactions to Claire's behavior are often no different than reactions to children who are misbehaving. Near Halloween, Claire's nondisabled cousin threw a tantrum in the Taco Bell drive-through. As her family drove through for their beefy burritos, the youthful attendant asked, "Are we practicing our Halloween noises early?" Similarly, last year as Claire and I walked through a garden of Christmas lights, she lapsed into one of her seizures. It was one of those seizures we have come to describe to our neurologist as "screamers." And while Claire fought earnestly with a strange electrical jolt journeying through her 24-pound body, an elderly woman turned, scowled and covered her ears in disgust.

What's Wrong With Her?

There are memorable evenings in restaurants as those around us tackle the concept of physical imperfection in a Cindy Crawford world. There was one incident in which I overstepped my bounds because of exasperation. A small girl at the table next to us was intrigued by Claire's appearance and inquired, "What's wrong with her?" There was the telltale lisp and volume control of all four-year-olds. The child's mother, embarrassed, shuffled silverware and commanded, "Turn around and eat your salad." Mothers of four-year-olds have long lost their ability for volume control,

But four-year-olds don't know the rules and their curiosity knows no bounds. 1 explained, "She's handicapped and needs a wheelchair." Again, the question: "But what's wrong with her?" Again, the mother's "Turn around and eat your salad," as she nervously coped with her awkward predicament. I found myself trying to explain the origins of genetic metabolic disease to this inquisitive moppet. But the question and the salad command continued their rhythmic volley. Finally, I offered, "Well, Claire didn't eat her salad." I often have visions of the child's pitiful life consumed with eating salad to avoid Claire's fate.

Many times, Claire's experiences pass before my eyes. Perfect strangers, in both the physical and unknown sense, have asked about the origins of Claire's condition. I've often wondered if it would be proper to ask them why their children are so obnoxious. The pain of their phraseology accompanies my flashbacks -- the questions posed as if she has no name, no presence, no identity. "Is she able to hear?" "Does she understand what you say?" Once one of my students inquired after class about sperm banks' liability for children with genetic defects born to inseminated women. His question was, "Who should bear responsibility for these mistakes?" He didn't know of our dear Claire. Claire, a mistake? I thought of a line from a 19th century hymn -- "the thought makes reason stare."

My Claire -- a mistake? This little princess who possesses the qualities the rest of us can only hope to develop over a lifetime: the patience to wait for people and things to come to you; the strength to never utter a complaint in spite of unfairness, pain or boredom; an ability to teach others through silent strength; a sense of priorities that permeates all who come to know her?

One of the parents of a child in Claire's preschool espouses a theory about these children with multiple disabilities. His theory is that they come from another planet and they're here to observe us; that they are a higher form of life with sufficient self-esteem and wisdom to sit and observe without saying a word. They take in each action, each word and each childish tantrum as only adults can execute them.

And each time Claire defies a doctor's prediction of certain death within six months, turns to my voice or makes the smallest reaching movement, I remain convinced of an inner soul that is beyond this world.

Handicapped or Disabled?

Once, in a discussion on new federal legislation, I used the word "handicapped" in describing the individuals protected by the act. "Excuse me, Marianne, but I think they prefer to be called physically impaired or disabled." I didn't know who "they" Were, but Claire has never been able to speak a preference. My faux pas had been corrected by a thirtysomething woman who was married and debating the possibility of having children -- but only after amniocentesis. She offered an omniscience on a subject that still perplexes me after five years. How to describe Claire is always at the end of my reflections. My flashbacks always come full circle to the question of labels and what is proper and improper to do with a child like Claire.

"Disabled" is a word used to describe 1973 Impalas abandoned, with good economic sense, along the freeways by their frustrated owners. It's a word used by traffic watch helicopter pilots when describing lanes to avoid. "Handicapped" conjures up visions of Lee Trevino, Arnold Palmer and sand traps. "Physically impaired" is more descriptive but is certain to be followed by, "in what way?" Shakespeare's "A rose I by any other name" often comes to mind.

Once Claire and I were in the park with my other children -- the pink chair ever present. A law school classmate spotted us and I introduced him to my children. He glanced at Claire, took her thin, tiny hand with its classic appearance brought about by neurological impairment, shook it and asked, "And how are you today, Claire?"

Later in the week he called and asked, "Marianne, what's wrong with Claire?" After I verified that he indeed was not eating salad, I replied, "She's physically impaired." I thought I knew what was coming next, but I was wrong. "No, Marianne. She's an angel." He's right. And if they wore them, angels' shoes would always be new, too.

Marianne M. Jennings ia a professor of Legal and Ethical Studies in Business at Arizona State University's College of Business. She is an attorney and a columnist for Arizona Republic. Jennings lives in Mesa, Az., with her husband Terry, and three children, Sarah,9, Claire, 5, and Sam, 1 1/2. SHE received both her B. S. in finance and J. D. from Brigham Young University in Utah.
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Author:Jennings, Marianne M.
Publication:The Exceptional Parent
Date:Jul 1, 1992
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