November 24, 2014

A Miracle To Believe In – Chapter 3

Since their return to Mexico, Francisca and Roby lived for their special time in the bathroom. They made requests, through church groups, local organizations and public service radio broadcasts for people willing to participate in their program to reach their special child. The urgency for help escalated as Roby’s business demanded more of his time, especially during the busy season. Despite Alicia’s input, his availability decreased. Francisca assumed more and more responsibility for the day-to-day sessions.

By the end of the third week, Robertito became more irritable, crying when he saw food. Francisca grew frantic in her attempt to feed him more rapidly. She wanted to intercept what she supposed was his fleeting unhappiness, remembering his first year of life.

For the first fifteen days following his birth, Robertito had been very quiet and unassuming. Then, on the sixteenth day, he began to cry day and night. Nothing soothed him. The doctor reassured Francisca, but she became petrified, plagued by a feeling of inadequacy not easily dismissed. Though she cuddled him in her arms, loved him, even cried with him, he never seemed satisfied.

Now, at four, his tearless, inexplicable sobbing oh the bathroom floor awakened that old horror. Fears tensed the muscles in the back of her neck. “Don’t judge it,” she commanded. “This doesn’t mean anything.” Nevertheless, she felt herself faltering. She would get through it for her son. As he devoured food, the contorted expression disappeared from his face, leaving his features smooth and undisturbed.

She watched him chew and felt drawn again to the past, to another face; more peaceful, more relaxed, more infantile. The crying during Robertito’s first month of life stopped as abruptly as it had started, replaced by an incredible calmness which enveloped every aspect of his behavior. When she picked him up, he never reached for her or grabbed her hands. He never indicated a desire to leave his crib or have his diaper changed. She did not question his passivity until the crying began again during his fourth month and continued, without interruption, for almost sixteen weeks.

When it stopped this time, Francisca and Roby cherished every moment, every expression of contentment on their son’s face. His increasing lethargy didn’t disturb them. During his ninth month, he said five words clearly. Yet, he never recognized his parents; there were no smiles when they appeared in his room. One person seemed interchangeable with the next.

At eleven months, he stopped talking and preferred to be alone, growing insensitive to sound, no longer responding to his name. His godfather, a pediatrician, noted the peculiar lack of desire for contact and decided to give the baby a complete physical examination. The physician found no signs of any pathology, but concluded there could be a problem of deafness. Francisca disagreed. Though Robertito did not respond to his name or the door slamming shut, he came running for food when she cooked with utensils in the kitchen. She also noted a similar response when he heard the unraveling of a candy wrapper.

Neither the Sotos nor the pediatrician recognized that little Robertito had begun his slide behind an invisible wall. As with other similar children, whether they be born in Japan, India, China, Russia, England, Sweden or the United States, this child’s inconsistent signs and peculiar symptoms confused and misled even professionals. Robertito would behave, ultimately, in specific, bizarre ways, exactly duplicating the specific, bizarre behaviors of other autistic children around the world … as if he and they shared the same genes or had, indeed, come from another planet.

At fourteen months, he broke a toy helicopter, then isolated the propeller carefully from the other sections and proceeded to spin the blades, hour after hour, like an accomplished expert. He glanced at people peripherally, rather than directly, no longer responsive to physical contact or affection. At eighteen months, an ear-nose-throat specialist insisted Robertito could hear. The physician admitted, however, that he could not adequately assess the extent of that hearing. Two other pediatricians told them to wait another year until their child was more “testable.” During this period, Robertito began to stare at his hands and fingers, often flexing them at the side of his head.

Francisca and Roby brought their son to the United States just after his second birthday. Francisca cried often now, wanting to understand but dreading the answers.

A hearing specialist in San-Diego confirmed the child’s ability to receive and respond to sounds through a complex series of tests. He suggested a psychiatrist at another hospital. The next physician diagnosed Robertito as autistic with a dismal and dark prognosis. Both Francisca and Roby rejected the diagnosis, refusing to believe their only child had a hopeless condition.

They shut themselves off from the world for the next year. They kept Robertito cloistered, away from the scrutiny of others. They lavished attention on him, trying to convince themselves he would develop normally. But Robertito’s strange and different behavior increased: spinning objects for longer periods of time, rocking even more frantically than before, pushing people away without ever having any eye contact.

Francisca tried unsuccessfully to distract him with toys. At times, she fought with him, trying, as gently as possible, to dislodge the objects he flapped. When she hid the strings and strips of paper he twirled in front of his eyes, he became hyperactive. Most of all, Francisca dreaded the trips to the market, where she shrank from the eyes of other women, an easy target for their whispers and disapproving glances. They viewed her son as more than just an oddity. They pulled their own children close to them as if Robertito might infect them with his terrible disease.

Both Francisca and Roby tried desperately to hold on to their dreams. Roby had wanted to give his son what his father had never given him, yet this little boy withdrew from his contact and his love. Francisca wanted a normal child for herself and for Roby, believing that in order to be happy, Robertito would have to become normal. She loved him passionately, trying to protect both of them from a reality she could not accept, from a future she did not dare contemplate.

One night, after almost a year of silence, a year of avoiding discussions about Robertito, Francisca and Roby faced each other across the dinner table.

“I want to talk about Robertito,” she said, almost shouting her request, refusing to let her fear silence her any longer. “I want to talk about Robertito,” she said again as the tears flowed.

“I want to talk about Robertito,” she said, almost shouting her request, refusing to let her fear silence her any longer. “I want to talk about Robertito,” she said again as the tears flowed.

“Roby, I’ve been unkind and stupid. I knew over a year ago, in San Diego, that the doctor was right. I just wanted the illness to go away.” Again, she broke down. Roby could not find the words. He comforted her with the strength of his hands.

“You’ve been a good mother,” he insisted. “Mommy, you have,” he repeated, addressing her with an endearment he never had the opportunity to use as a child. “Robertito couldn’t have better than you.” He knew she had delayed, as he had too … but he also knew she needed the time to come to this place.

“We have to get help,” she said. “We just have to.” She held her breath for several seconds, then continued. “I don’t know what to do anymore. I thought it would be so easy, so beautiful to be a mother. But it’s not, not with Robertito.” She held her hands in front of her face.

“Are you okay?” he asked.

She shook her head. “I will be strong. I will, she declared, more for her own ears than for Roby’s. At that moment, she decided to suppress her fears and doubts in an effort to deal with the situation. Though she would cry many times in the next year, she would wait until that visit to New York before permitting herself to face any of the ghosts of the future.

They began their journey with the help of a close friend who suggested a child psychiatrist in Guadalajara. The doctor sounded hospitable on the phone, but when they described Robertito’s symptoms in detail, he suddenly asserted that he only dealt with adults and abruptly ended the conversation.

Another physician gave them an interview in the same city. He told the Sotos that these children were a lost cause. He added, hesitantly, that all the other autistic youngsters he had seen were far more advanced than Robertito.

“Did we wait too long?” Roby asked.

The doctor leaned back in his chair and peered at the little boy rocking against the wall. “No, No, Senor Soto. It doesn’t really matter. These children never come out of it.” His casual manner infuriated Francisca, though she remained silent. Her son did matter.

Three days later they flew to Mexico City, marking the first step in depleting their life’s savings, which they had accumulated by working together, side by side, for twelve years in their store.

Francisca stared through the dusty window of the taxi as it sped them from the airport to their first appointment in the capital. She and Roby made love for the first time in this city. They had walked arm in arm down the great boulevards and chased each other down narrow, ancient streets. She remembered everything, including the wine and the laughter; especially the laughter. One drink, that’s all, and her serious, very serious Roby would become giddy and silly. She loved that little boy part of him which he kept under tight harness. She turned to him now and watched him watching his son. Had his soft, sensitive eyes grown sadder? Was she still pretty? Did he feel cheated in their marriage because of their son? Had she, in fact, failed in some unknowable way? She tried to block the questions. She wanted to give Roby everything he never had. Especially children. Especially a son. Francisca looked at Robertito twirling his fingers and humming in an eerie, high-pitched voice. What happened? She would do anything to make it right. Anything. His little fingers fluttered in front of her face, then tapped repetitiously on the back of the driver’s seat. She tried to touch his arm, but he pulled away.

When they arrived at the clinic, they visited with a physician specializing in neurological rehabilitation. The doctor classified Robertito an autistic and instituted an elaborate program in patterning. This process, based on the thesis that the child has missed some important developmental stage, seeks to have him relive various developmental milestones beginning with the birth experience. After Francisca and Roby watched the therapists wrap their son in a blanket and drag him across the room, ignoring his screams in their effort to simulate a womb experience, they discontinued coming to the clinic.

Several days later, the Sotos met with a team of neurologists and psychiatrists who suggested they could, perhaps, work with “the boy” and facilitate some elemental responses. Francisca asked about the rationale of their program. Complex and confusing medical terms rendered their answer unintelligible. Could they observe the program? One physician indicated that would be impossible. Under those conditions, Francisca and Roby declined their input.

A child psychologist prescribed a behavior modification program for Robertito. They observed her staff work at a nearby hospital. The interaction with the children appeared so mechanical, so robotized, so unloving. The most advanced child had learned to feed himself and stack four blocks on top of each other. The somber expression on his face clouded his accomplishment for the Sotos. After disengaging from the strict ritual of the session, he never looked directly at anyone, never once initiated human contact as he wandered around the room aimlessly. Francisca and Roby wanted to search further, though growing more sensitive to the passing weeks and months as they traveled from clinic to clinic.

At a hospital in Pueblo, a doctor, after extensively examining their son, said the boy was possibly a victim of an undetected case of encephalitis, but certainly was not autistic. He recommended an associate physician and college professor in the United States who directed programs at two major institutions. This man, in turn, disagreed with the recommending doctor, positively identifying Robertito as severely retarded and autistic with only a possible complication of encephalitis. He put the child through his sixth psychiatric work-up in addition to ordering an EEG (brain scan). The evaluation disturbed him visibly, Robertito’s brain waves in the left frontal lobes were weak and intermittent, suggesting irreversible brain damage. Since this area controlled cognition, memory, language and communication, he asserted there could be no hope for speech, thinking and processing of information.

The room began to spin for Francisca. The acid in her stomach gurgled and backed up into her throat. She steadied herself on the chair. Too numb to shout or feel pain, she turned inward. The room disappeared. Sounds no longer penetrated. In the privacy of her mind, she saw herself as a little girl again. She raced through a vineyard, trying to find her home. “Mama, Mama,” she cried, but no one answered. “Please, Mama, please … where are you?”

Francisca’s lips never moved. Her eyelids blinked only once. Beads of sweat dotted her forehead as her hands clenched the arms of the chair.

Roby nudged his wife. “Mommy?”

She looked at him through melancholy eyes. Somewhere deep inside she heard a voice scream: “God, why do you leave me so empty-handed?”

In the United States, Francisca and Roby visited other doctors, other clinics. Though disturbed by the methods of behavior modification they, nevertheless, enrolled their son in such a program for almost a year with no results … except for a notable increase in anger and unhappiness.

Two years of waiting, hoping and searching; precious time irrevocably lost. But at least, now they had found something special. For the first time, in New York, they met a child who had come the whole distance. For the first time, they listened to a program and life approach which felt so right not only for Robertito, but for themselves. Only one fact troubled them. They recalled that we had started our program when our son was under one and a half years old. Their own child had already passed his fourth birthday. Had Robertito’s mind lost its elasticity? Had he spent too many years behind the wall?

Their attempt to develop their own home program entered its second and third months. The new ads and radio announcements, which skirted the issue of autism and offered modest payments, attracted many applicants. Most of those interviewed became mysteriously unavailable after the initial meeting with the Sotos and Robertito. Three young women survived the first shock of close contact with a special child and still offered to participate.

Marie, a graduate student at a neighboring college, studied all areas of abnormal psychology. The practical experience of working with an autistic child fulfilled some of the requirements for her degree.

She watched Francisca imitate her son and feed him at eye level. The outrageous and startling behavior of both mother and child fascinated her. Marie sensed the boy enjoyed his mother’s parallel motion, although he never acknowledged her presence. His uncommon beauty and self-stimulating passion hypnotized Marie. She tried to suppress her immediate attachment and affection for Robertito. Her psychology professor championed the aloof and objective professional as if caring and helping were incompatible.

She had once viewed so-called psychotic children from the safe side of a two-way mirror, never within breathing distance. Her textbooks froze them amid statistical data. No warm hands, dirty diapers and silent stares. No flesh and blood people with real tears. Suddenly, Francisca and her son frightened her. Marie lunged for the refuge of her classroom. Panic seized her when her turn to work with Robertito arrived. To watch a child perform “crazy” actions seemed simpler than to do them herself. She fought her impulse to flee, forcing herself to flap a wooden block when he did and to mimic his hand movements. Her voice echoed his bizarre whine. But her rigid body language and the odor seeping through her garments betrayed her attitude.

Francisca observed her son become more hyperactive, noting his tendency to move away from this petite, pretty young woman … as if avoiding an energy field surrounding her, Robertito increased the pace of his activities; his motions sped into high gear like a cartoon character dancing wildly through a nineteen-thirties’ movie. Marie backed away.

The two women stared at each other. Francisca squelched her disappointment and touched Marie. She tried to remember the questions we asked her in New York. Her mind went blank. Nothing. A void. She admitted defeat, annoyed at her own ineptitude as a teacher. She knew Marie had not been prepared for the session and had not even been comfortable with it.

The young woman put her hands over her mouth, but her effort to abort her announcement failed.

“I… I just can’t, Senora Soto,” she whispered. “He’s really a wonderful boy, really and truly.” Marie glanced at Robertito, then squeezed her eyes shut.

“What can’t you do?” Francisca asked.

The young woman swallowed noisily. “I want to help you. I just can’t. I feel so … so stupid doing those things.”

Francisca withdrew her hand and sighed. She wanted to love this girl and shake her at the same time.

“No, no, Senora. Please. Do not look so sad. You will find others much better than me.” Marie jumped to her feet. “Forgive me,” she mumbled as she ran out of the room, leaving Francisca alone, very alone, with her son.

Within days, the other two volunteers quit. People came quickly and left quickly. Francisca had stressed technique and sheer hours as her fortress. Not once did she confront directly her doubts as a teacher or her discomfort about making decisions affecting her son. Instead, she extinguished her own questions as well as the ones she might have asked Marie and the other helpers. Again, Francisca relied on the dignity of form and technique. Rather than face and, perhaps, dissolve the anxiety and fears, no matter how embryonic their beginnings, she tried to avoid them and when she couldn’t, she tried to drown them with bursts of energy and enthusiasm.

Francisca worked eight hours steadily each day. No complaints. No regrets. Roby contributed during his lunch hour and in the evenings. Though Robertito’s crying escalated whenever his mother introduced food into the room, he appeared generally less frantic, less hyperactive than in the previous months. Their loving and accepting attitude still prevailed toward their son, but their trust in themselves began to dissipate.

Three months whizzed by; no signs of progress, no task oriented accomplishments to be checked off on a standard educational chart. Francisca’s energy ebbed during the fourth month. She remembered Suzi’s bright aqua eyes and the bubbling energy which must have sustained her during those three years working with Raun. She recalled my prodding questions, my constant effort to prepare them and to teach them. “Before the Kaufmans had trained others, they did it alone.” Francisca imprinted that notion in neon before her mind’s eye, using it as a constant reminder and inspiration. To date, she had spent one hundred and twelve incredible days in the bathroom with her son and he still had not even demonstrated some of the skills he had exhibited with Suzi and me months before.

An early morning sun seeped through the windowpanes, bathing the room with soft yellow light. Mother and child threw their heads and shoulders from side to side, a rhythmic body dance punctuated by soft guitar music. Robertito snapped his body into a rigid position and surveyed the toys which littered the floor around them. Francisca turned the tape recorder off immediately. She gathered five blocks between her legs and performed the ritual of building a tower in front of her, initiating her seven-hundredth attempt to teach her son how to stack blocks. She called attention to each piece in the structure, neatly disassembled it and then rebuilt it again. Each time she gave Robertito a block, he flapped it beside his head.

She decided to alter her strategy after six fruitless attempts to engage him. She placed her hand over his, hoping to direct his movement. To her amazement and delight, he did not resist. She placed a block in his opened palm, then closed his fingers around it. Francisca guided his hand gently, ever so gently, to a point directly above another block. She shook his wrist until the wood form dislodged from his grip, landing on top of the other. Francisca nodded and applauded.

“Good, Robertito. Good. You’re getting the idea, aren’t you?” Oblivious to her words, he stared at the doorknob and hummed.

“C’mon, we can do it again.” She repeated the exercise several times. Now she had to pry his fingers open in order to release the block. Nevertheless, she cheered him and coaxed him to try again and again. Finally, he pulled away from her, twisting his body and head from side to side. She followed him into his world of repetitive motions.

Toward evening, Francisca brought his meal into the bathroom. The shouting and crying began again. She fumbled with the spoon and upset the container. Food fell on the floor. They both dived simultaneously for the pieces of fish, but her hands moved faster than his. Robertito screeched his dissatisfaction. Francisca, in response, stuffed his mouth repeatedly.

“I’m sorry. Please, please don’t cry, don’t be unhappy,” She whipped another spoonful into his mouth. “Here. See. Everything’s all right now. That’s a good boy. No more crying.”

During the calm, when he chewed, Francisca repeated the block-on-block ritual.

“Okay, take this!” she said, placing a block between his fingers. No resistance. She showed him a banana slice. “C’mon, put the block here and I’ll give you the banana.” She pointed while guiding his hand. Suddenly, beneath her fingers, she felt his movement joining hers. She held her breath. When both of their hands arrived at a point directly above the other block, Robertito opened his hand spontaneously, letting his block settle on top of the other. Francisca screamed, filling the room with her applause.

“I don’t believe it. Oh, God. You did it this time.” She shoved the fruit into his mouth. “That’s great, Robertito! Just great!” She tried to hug him, but the force of her arms jolted him. He pushed her away, grabbed a puzzle piece and flapped it.

The following day, Francisca could not get Robertito to repeat his accomplishment. She offered him bananas, apples, pears, peaches. With single-minded concentration, he rocked frantically throughout the entire morning and afternoon. She followed him like a pied piper, ignoring her own disappointment and dizziness. Be strong! Like Alicia! Like Roby! Like the Kaufmans! She remembered our discussions about acceptance, comfort and understanding being a source of power. Yes, she had experienced that sensation after our sessions, but now, alone, without external support, her strength came from an act of will … a declaration. She faced her son erect and determined as she duplicated his actions studiously. The tension of her posture competing with the intense, rapid ,rhythm of her arms sapped her energy. She fixated on Robertito’s dark, hypnotic eyes. Wasn’t there strength in love? Francisca could not imagine loving any human being more than she loved her son. “I’ll stay with you, Robertito. I promise.” The more she feared her fatigue, the weaker she felt. Her diaphragm tightened, suppressing the full expanse of her lungs. “I’m here,” she said reassuringly to her child. “Mama’s here.”

Roby returned home with Alicia at five o’clock. In accordance with his custom, he tiptoed down the hall to spy on his favorite people before working a shift with his son. He pushed the door open slowly. Robertito, barely awake, flapped a paper strip in slow motion. Francisca, her hand clutching a piece of tissue, lay on the floor beside her son … fast asleep.

Having mastered the art of turning doorknobs, Robertito Soto roamed the house freely during the following weeks, refusing to stay in the bathroom. They taught him to insert one circular form into an insertion cube. He stacked several blocks and, inconsistently, on request, he touched his nose. He took three months to learn to put one cup inside another. Yet, one time, he placed a puzzle piece into its rightful slot with apparent ease while actually looking in the opposite direction … as if his hand could be more exactly guided by some internal radar system rather than with the aid of his vision.

He looked in the direction of people more often, but with no observable frequency. Occasionally, he peered directly into his parents’ eyes for several fleeting seconds. He chose to be alone whenever possible, exiting rooms occupied by other people. And yet, in dramatic contrast, this strange little boy began to allow his mother and father to touch him. A soft smile often radiated on his face. Only the appearance of food provoked a grimmer mood.

The Sotos wanted more progress and decided to feed him less at meals in order to use the food as a learning incentive. They noted, for limited periods, Robertito would definitely respond more. But as the quantity of his meals decreased, his random crying during the sessions increased, especially in the presence of any food whatsoever.

Francisca resisted his tantrums at first. Then Robertito began to hit his chin, cutting the skin with his nail and drawing blood. The image of a little girl tied to a chair, her head encased in a football helmet, assaulted Francisca’s memory. Boxing gloves had been strapped onto another child in the same hospital, preventing him from chewing the flesh on his hands. Would her son become self-destructive like them? Her diaphragm spasmed against her rib cage. No. Impossible. Please, God, not Robertito… never Robertito! They were extreme cases, she assured herself. And those children had not been treated lovingly. Not the way she and Roby treated their son. Nevertheless, she began to feed Robertito excessively in an effort to compete directly with his chin-banging. Instead of subsiding, it increased. Francisca went with her fear, rather than with her son.

Robertito, despite his tangential contact with the outside world, had learned something very special which had gone unobserved by Francisca and Roby. Food, delivered out of anxiety, had become the immediate response to crying and chin-banging. In effect, food rewarded and supported the very behaviors they dreaded.

The following five months brought new additional accomplishments. They felt ill-equipped to respond productively to each new situation with their son, clutching nervously to the few specific techniques they had learned. They defied the mechanics. A non-judgmental attitude toward their son stayed with them, more often as a strategy than a vision of seeing and embracing themselves. They responded to an idea, a rigid and inflexible notion they fixed like gauntlets between their eyes.

They hesitated calling us in New York, believing they had already received more than they deserved.

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