I Have a Question!: A Tormented Journey to Language

By Carole Stewart

I Have a Question? is a poignant mother/daughter narrative that began as an exhaustive search to determine the origins and therefore the answers to multiple medical irregularities that entail the story of Julie, a remarkably determined young lady, whose only goal was to be accepted as the perceptive and intelligent person she indeed is. She wanted to be "Normal," like the three brothers who provided much of the early window of her world. Most of all, she wanted more than anything else to go to school. Her early development was noted for its steady and eager progress until a seemingly ordinary infection shortly her second birthday turned the happy placid child into a screaming terror, unable to eat or sleep. Her weight dwindled to eighteen pounds whereupon she was prescribed a bottle-fed diet which included massive doses of Vitamin C, Niacin, B6, and B12-and large areas of Julie were covered with an angry burn like rash for six full months. The child became well then, as suddenly as she had become ill, though her growth would continue in the lower 10th percentile, and her language would now display only the repetition of the rote words learned in speech classes. Julie's experiences over the long and lonely years give important insight into the suppressed anger often seen in school yard violence, just as Julie's victories affirm the efforts of those who try harder to understand.

• Language: English
• Publisher: Covenant Books, Inc.
• Release date: Apr 1, 2019
• ISBN: 9781644715680

Book preview

Into the World

Julie didn’t arrive in the world languishing for want of self-esteem. She began upside down, kicking and wailing her indignation at her unexpected breeched/unbreeched debut. Waaah! Waaaah! Waaaaah! Her scream sounded like a jackhammer splitting concrete. She blinked unwittingly at the glare of sights and sounds. "Aieieeeee!’

Aieieeee! the doctor answered, laughing as he thrusted the jiggling infant scale in her direction. In that quiet time between the thrashing of grasshopper legs and the beginning of a frantic howl, a nurse announced her birth weight. A joy has been set free, and seven pounds, two ounces was no puny joy.

Born to the promise of talking dolls and canopied beds, this fairy princess sister/Julie in wonderland daughter had a splendid pudgy head crowned with barely a wisp of sunny hair. There were elfin ears and a round hungry mouth distinguishing the perfect baby who possessed among her charms, a cherry blossom nature. And although she had admonished the world for her upside down birth, now even her tears were honorable. When she was dry, wrapped snugly in her blanket with a full tummy and the air burped out, Julie gathered fistfuls of sheet and slept like an angel with flannel wings.

The young lady was presented at once to brothers with chubby knees who quickly welcomed her with hugs and pinches. Julie gazed wide-eyed when three-year-old John and two-year-old George held her each in turn. She permitted their close inspection and then howled like a coyote when they put her aside for a model International Harvester tractor and a stuffed one-eyed raccoon.

Soon at the center of the children’s universe, Julie collected every treasure her brothers could unearth. She petted the kittens and toads, toppled Lincoln Log wonders and squealed at the rebuilding. She shook and plucked the endless gifts of bluebells and wild daisies, their naked stems hidden in the folds of her diaper. And the flowers were justified, for here was a baby who delighted in all the ordinary ups and downs of babyhood and more than anything else, delighted in the audience of her brothers. She responded to their attention by learning to roll and sit so that she could see what they were about. When she was seven months old and able to pull herself into standing position, Julie bounced, gleefully, showing off her own accomplishment.

How grateful we were for the wise and energetic grandmother who filled the family albums with pictures of Julie and her brothers, at the zoo, the circus, and in the arms of the department store Santas. Grandpa rented a cottage at the seashore so that the children’s busy daddy could spend some time with his lively crew and so that the children could bury each other in sun and sand. Whoop! Julie sang to the ocean as she watched it disappear. Whee! as it rose up again and again around her tiny red bikini. Above sunny curls, two rainbow-colored kites strained the cotton strings attaching them to two bronze-bodied brothers.

Early years were a whirl of familiar routines and delights punctuated at times by tears and temperatures. Parents were pressed to catch the quantities of milk that spilled each day between the cracks of black enamel kitchen stools. For every so long Julie’s reign as a stand-up princess continued and the kingdom began to grow up around her. Although she did not try to move away from her open playpen, we were always amused and pacified at how busy she kept, how long she persisted in performing her one-handed diaper jig.

Our daughter did not try to speak as other children. She stood and looked, with curious eyes not quite focused. She jabbered. Sometimes she became walleyed for a few seconds, as though she was called off to another time and place. Then in a minute or five or ten, her eyes were almost straight again. It was a disturbing phenomenon to watch.

Floppy eye muscles are not uncommon in babies, the children’s pediatrician assured, pointing out how perfectly proportioned, how lean and active Julie was. Marvelous baby, it said in her record book. Not to worry that she doesn’t try to imitate speech. Babies develop at their own rate. And so Julie did.

As summer passed, curious brothers made Jell-O in the bathroom toilet and painted outdoor storm sewers regal blue. In separate bursts of energy, they tried to ignite Tinker Toy sticks in the furnace pilot, and rode near naked on three-wheeled bikes through the busy housing development where we lived.

So patiently, Julie stood and watched. When she and her brothers were well again after a two-week encounter with scarlatina, Julie appeared to be ready to step out right behind them, but she was content stationed at her daddy’s knee where she listened to the reading of Raggedy Ann books and clapped the rhythm of nursery songs. How she loved to be swooped in the air to the cue of Jim Jump. Did she hear the words? No one wondered. Julie had been quick to smile, to sit, and to stand. She had yet to learn to crawl and scoot.

When she stood scarcely up to our knees, we took our tiny daughter to the ophthalmologist. How can she see with eyes looking in opposite directions? asked her perplexed father. To our most profound amazement, after several visits, Julie was fitted with miniature pink plastic-framed glasses to correct a visual deficiency within the limits of legal blindness.

Outside the doctor’s office, Julie in her new glasses, stooped down and picked a handful of fresh grass. She examined it, plucked a single blade to her lips, and watched with delight as it fell from her open fist to the lawn. Julie’s discovery was repeated thereafter, every time she set foot in green grass. Then she stacked peas and green beans in rows on the table, poured milk in her plate and cheered at the white puddles it made.

No sooner had Julie begun to see her world that she began to explore it with great excitement. She stepped out like a windup Teddy bear and began to walk. Not even the furniture was safe in her carpeted-forest path. But the most curious thing began soon after. The walking baby began at last to talk! Aletonay-america, nashinggodforall. Gobbledygook for certain, but it was talk. Julie was twenty-two months old, and she had a fascinated audience.

Illnesses of ears, noses, and throats had continued to plague our household and disrupted our sleep to such an extent, that one winter day, I found myself stationed between two cribs in a marble-floored hospital, dividing love and ginger ale between brothers. Grandma attended the children during my absence. Almost before her brothers were again eating pickles and potato chips, it was Julie’s turn for illness. Hers was strange. Enormous baby teeth had tormented her for many months and still had not protruded. Julie grew increasingly restless and rigid. Her whole system seemed to be involved in a battle with her angry, swollen gums. She refused to eat and reacted badly to sulfa medicine for nasty bladder infection which was supposed to make her better.

For several months, Julie’s legs and bottom were scarcely covered to heal the stubborn rash that spread over nearly the entire bottom half of her. Julie screamed and strained each day with constipation. Her small chest heaved from a pounding of her heart and wretched sobs from the bottom of her soul.

When thick white enamel appeared in her mouth at last, Julie’s were not the pretty baby teeth revealed by brothers. Hers were simply enormous. Sometime later, when she smiled again, she looked a little like a red-haired beaver. Although a pediatric dentist swore that these were Julie’s permanent teeth, X-rays showed another set (much too close) behind them.

The entire family could eat again, but not before Julie’s weight had dwindled precariously, and we had nearly forgotten Julie’s once placid nature. At two-and-a-half years and eighteen pounds, Julie had become a skinny terror! We waited for a review of her scanty development at the nearby children’s hospital. It was a process that stretched over many weeks of waiting in line, with Julie, her three brothers, and a number. The youngsters entertained each other as they waited, but it was Julie who bore the brunt of examination by a series of unknown doctors. Although they determined that nothing was medically wrong with Julie, she had shed tears of anguish, enough to fill a doctor’s bag, before they were finished. Bring your daughter back in a year was the consensus. We’ll check her progress.

The sister and the brothers continued to grow in body and spirit. They chased the Easter duck and the kitten in the yard next door. The children from the yard next door chased the brothers and the sister. In the summer, John and George tied a wagon between two tricycles making a passenger seat for Julie. Three children toured the friendly neighborhood looking for situations that offered challenge: A hunter was shot and wounded in the woods behind our house. Six anxious eyes (one pair aided by thick lenses) peered at the screaming ambulance. A motorcycle skidded out-of-control in the cinders at the end of our street. Wild-eyed children watched from the safety of their front step as another ambulance sped away.

Less intense excitement was often as near as the children’s sandbox, where a neighbor boy delighted daily in pouring sand on Julie’s head. Brothers delighted in her rescue. All had a constant stream of companions who came and went, invited and not, behind the sticky sliding-glass doors, at the home of Julie and her brothers.

Three months after Julie’s second birthday, she was presented with a new baby brother. Babee, enodownbebabal-mylap. No one knew for certain what the young lady was talking about, but we could see she loved baby Todd. She held him. Carried his bott dupe and splashed in his bath water. From her own crib in the room they shared, she watched over his sleep, jabbered her unintelligible speech in his direction, and laughed with glee when Todd gurgled a warm response. Many secrets, excitedly exchanged, remained safe from the ears of those too large for potty chairs.

Now that my time was divided by the diapering and feeding of a baby, Julie quickly learned to help herself. Over the side of the crib went the left leg. The right one soon followed with Julie landing on the floor. She giggled, picked herself up, and paused to greet the larger-than-life sized Mickey Mouse painted on her cupboard door. Hoho…Mickeeeahhh. She was off to run upon a braided rug in a big room, separated from the kitchen by only a counter with children’s stools. At one end of the room was a big wooden desk with an electric typewriter. Each of the drawers was filled with papers of varying degrees of importance. The desk was used for Daddy’s work, his night classes, and for Mother’s writing. Although it was not a place for wet fingers and nosey toddlers, the seat was often filled with knees and tennis shoes. The drawers were often stuffed with crayons and crumpled drawings. Julie, like her brothers, had an agenda of her own.

Julie was propelled by her own determination as she practiced her unsteady gait, hands grasping at the space beyond her. She rehearsed by day and sometime after we were in our beds sleeping. We found her fast asleep on the dining room floor, twice, three times. Then we stayed awake to see how she got there. At a little past midnight, Julie emerged from her room and began to trot around and around the braided rug in the family room. Around and around Julie went until she was tired. Then she dropped to the floor and slept in the same place where we had previously found her. Thereafter, we parents slept less and worried more for her safety. Some weeks later, Julie began to expand her nighttime activities, opening the heavy desk drawers and strewing their contents upon the familiar oval rug. When she was finished, her march resumed until we awakened her and carried her off to her bed.

A month or so after the discovery of her strange nighttime activity, Julie stepped through an open doorway and tumbled down the basement stairs. She was not hurt, but the occasion seemed to provide an opportunity to get answers to question we did not begin to know how to ask.

We took Julie to see a well-known neurologist in Pittsburgh. Ignoring her loud objections to an upside down examination, I helped to hold her still. Julie shrieked and wailed as she was probed from the top of her head to the tips of her tightly curled toes. My head was spinning as I considered a laundry list of unspoken possibilities Julie could be facing.

Why is she screaming like this? the physician asked.

We had hoped the good doctor would have the answers. As I rocked my precious and terrified daughter back and forth, I patted and coaxed while fervently praying that these fears were silly. Shh, baby, shh. But Julie would not be shhhed. And I was soon to learn that God could not be coaxed either.

This child shows definite signs of brain damage. A verdict was given without any attempt at explaining what these signs were. The doctor shuffled papers on his desk, tore a page from his calendar, and continued as though he was giving an address from a podium. This one isn’t as bad as some. She may have been injured at birth or not have developed properly during pregnancy. Who knows. It’s impossible to determine the nature or extent of damage until we are able to do more sophisticated testing.

Julie’s wail became a siren of protest.

Take her home and keep a tight grip on her or she’s likely to become uncontrollable. The physician’s words cut deeply. The siren grew in intensity. We watched as the doctor pushed back his chair, his speech concluded. You will probably want to begin special schooling at seven or eight.

For an instant all eyes met. We were somehow connected, the verbiage of an ill-pronounced sentence. The judge retrieved his steel reflex hammer, slipped it into his lab coat robe, and awkwardly left his chamber. Tiny Julie clung to my lap, her most sorrowful shrieks and wails unheard beyond the closed door of that one enormous institution.

A center for children with speech and hearing problems agreed in the spring to take Julie into their program. Although she was not yet three, her language needs were great. Since the visit with the neurologist, she reacted with stark terror to any man wearing glasses and a jacket. She could not be touched by a stranger, even for something as simple as trying on a pair of shoes. John, George, and Todd had long since wearied of Julie’s screams and Julie’s appointments. We all agreed that it was worth a try.

Julie’s therapy at the center began fairly much as an adventure. Her therapist, Mrs. Freeble, proved to be a saint, who took the time to understand the fearful charge and engage her right where she was at every session. Julie happily responded each week to her time with Able. What Julie and Able actually did behind the closed doors of the mirrored playroom remains a secret, as is nearly always the case with children’s therapy. But the important result of her continued relationship was that Julie began again to trust. First, it was a lessening of the terror. Gradually, as months and then years passed with brothers riding the big wooden rocking horses at the center as they waited, everyone knew that Julie was improving. Her language was beginning to grow, and even the funny walk became less conspicuous as she relaxed her arms and filled them with new and exciting projects from the center.

One day, Julie marched out of Able’s office and went directly to the tallest horse in the playroom. Everyone stopped to watch as she stretched to pull herself into position. Julie galloped back and forth on a painted red rocker and there was a heap of jubilation in the room as three brothers mounted horses to celebrate her exciting new accomplishment.

When Julie has made sufficient progress at the center, the staff decided that it was time for her to be tested. Inside the special office where testing is done, Julie gazed at the brown briefcase open on the psychologist’s desk. Here was something different. She cocked her curly head to one side peering myopically at the beads and blocks the familiar lady had put upon her desk. It looked like a game for children. Where were her brothers?

No one could have anticipated the special skill it would take to evaluate our Julie. No one could have guessed that her first testing would be like Pandora’s box forever opened.

Julie grew weary of the picture cards which were placed in front of her. She fidgeted in her chair and gazed at the big numbers on the wall clock. Julie did not draw the circle or build the bridge. She did not string the colored beads. Julie was finished with test-taking.

Chapter 2

The Experts Act—Adversity Is Born

Three young brothers and two young cousins like to celebrate birthdays and holidays together and sometimes just ordinary days. Julie’s birthday cake in 1968 had four candles to put out for a wish!

Altogether in accordance with the rites of childhood, school became a thing of grand proportion. First it was a game pretended, then John’s triumphant passing into kindergarten began a tradition quickly upheld by George, and clearly envied by Julie. When we moved from one suburban Pittsburgh school district to a larger one in 1968, we found that the yellow school bus now stopped at our mailbox. It was a major event that required Julie’s presence each day. She collected the artwork and papers from her brothers’ book bags even before they reached the front door. The ones Julie liked best were Scotch taped to the front of the refrigerator, the remaining pages squirreled away beneath the flap of her own bag.

An acre of grass and trees taller than the children who climbed them meant plenty of chores for an entire family. We settled into new routines which were often centered around a big vegetable garden and a two-year-old collie named Rory. There were playmates on both sides of the road. Long after dusk each evening, the sounds of children could be heard throughout the neighborhood.

During the summer and every six weeks after, the boys took time out from work and play to accompany Julie for her lengthy eye exams. While her brothers waited, Julie’s right eye muscles were