November 24, 2014

A Miracle To Believe In – Chapter 4

Roby. Francisca. Robertito. Their faces, their tears and their wanting haunted me. Though Suzi and I had worked with other parents and professionals, loving and caring for them during those moments of contact, Francisca and Roberto Soto left a special imprint under our skin. They had grabbed for everything they could. They had even faced their own demons during their visit with us in order to reach their child. And Robertito had dazzled everyone with incredible changes within the single week they had spent with us. My words to Francisca and Roby had been clear in our last meeting: “Call us, write us, use us in any way you can.” And yet, ten whole months of silence greeted my offer.

During that period, hundreds of people passed through our home. Many came in search of miracles. Others wanted us to perform the “magic” on their children. Sight-seers and skeptics arrived. A noted physician took two days of our time, asking to learn our approach, and then, in a public forum, he ridiculed our attitude of acceptance as nonsense and unscientific. A leading psychologist and educator called our work the most significant advance in psychology in twenty years. An organization concerned solely with the welfare of autistic children attacked us privately, then publicly, without having met us or observed our work. What we had done for the love of one child inspired some, but frightened many others, especially those people with an emotional and economical investment in depicting these children as hopeless and using techniques which supported those beliefs.

Sometimes I wanted to turn away. We tried to live a lifestyle based on love and acceptance, not combat. Fight the devil and you make him stronger. Our energy focused on teaching Option to adults and young people, who used their own experiences and triumphs to substantiate their happiness and power. Before designing a successful program for our son, no one screamed at our doorstep: “Prove it according to this standard or that standard.” We had nothing to prove; no offering of nirvana or a way to live which everyone should embrace. We had found something that had altered our lives dramatically and wanted to share it with those who wanted to know.

Raun’s young life and his journey through autism became a demonstration for Suzi and me and all those who worked with him. Had he had cerebral palsy or multiple sclerosis or leukemia, we would have turned our energy toward him with the same attitude and clarity of purpose. His autism was not nearly as relevant as the fact that he had been dismissed as “incurable” and “irreversible.” Though we believed others might profit from understanding his rebirth, we presented no instant cure for autism, schizophrenia or brain-damage syndromes. What we could point to was the impact of labels and judgments as self-fulfilling prophecies. Had we listened to the pronouncements of others and not trusted ourselves, Raun would still be autistic, stranded behind a steel door, a forgotten statistic confined in some nameless institution for the remainder of his life.

One person’s opinion or belief can be another person’s death sentence. That had been the message for us.

Rather than attend conferences and debates, we worked with people … one at a time, putting our energy out there in a caring environment instead of spending hours defending ourselves or confronting other people’s bitterness. “Talk to those who want to listen,” I repeated to myself over and over. “And let the rest be.”

Each time I said enough to autism, another couple like the Sotos entered our lives for an hour or a day. Whether they came from Japan, France or Minnesota, their soft voices and sincerity drew me back; other parents, other children … other mountains to face. But a time limit always confronted us. I knew we had only walked with them for that first step. Was it enough? Francisca and Roby and the promise of that special week revived that question continually. We had lost them to their own silence … and, then, finally, a letter arrived.

“We’re writing you,” they began, “hoping you are in good health, in the company of Bryn, Thea and Raun. We remember every one of you with love, in that atmosphere of affection and understanding that prevails in your home.

“Thank you … thank you very much for being with us and Robertito, for sharing with us your care, your special vision and love in this beautiful task that we have undertaken.”

They described the months of work with Robertito. They believed he enjoyed their imitation of him. Small portions of “organic” cookies and slices of fruits had been used to improve his eye contact. He demonstrated an ability to stack one block, withdraw a puzzle piece and move to music. Diet changes had been dramatic, feeding him all natural foods.

Although they noted lack of language development and the continuance of self-stimulating behaviors, they never mentioned his crying at meals or chin-banging.

“We consider that we’ve made some progress and, of course, we continue like the beginning, with much enthusiasm, love and acceptance, offering him the best of ourselves … motivating him, stimulating him, loving him immensely and always alert to help him even more.”

Elated, Suzi and I wrote them an extensive letter, with suggestions and a series of questions. Several months passed before we received an answer. Their correspondence acknowledged ours, but did not deal directly with it. Since they knew I would be in southern California as part of a national tour for my second book, To Love Is to Be Happy With, they asked me to visit them and give them additional assistance.

When I embraced Francisca and Roby in Mexico, I realized the strong, almost passionate, attachment I felt for both of them. Their eyes gave me so much more than just a hello. Time had intensified our bond. We conversed clumsily using sign language and single Spanish words. Jaime joined us within the hour, surprising me with a hug and smile.

“Bears, it is good that you are here, even for an overnight visit. They need your help. And, ah, how do you say it; ah, yes … I am at your service until you leave.”

I tapped his cheek. “Maestro, you’re a special person.” Jaime blushed. “A red face is a sign of humility,” I assured him. Everyone laughed. “Please tell Francisca and Roby that I want to use every minute to work with them, even if we have to stay up all night.

Okay?”

As Jaime translated, Francisca smiled like a little girl. Roby hugged her, barely containing his huge grin. “Yes, yes, all night,” he said. “If necessary, all night.”

The beautiful little boy I observed seemed less responsive than the one who left our home over a year ago. The patterns of crying and chin-banging infiltrated every session. His weight gain had made him lethargic. And yet, he often reminded me of Raun with his far-off angelic expression. We worked until four in the morning, using extended dialogue sessions to unravel some of their fears and anxieties, which had compromised their attitude significantly.

The next morning, I concentrated on concrete suggestions for changes in the program and in diet. I tried to give their niece, who had just volunteered to help, a quick orientation.

Their smiles waned quickly as we said good-by. Somehow, we all knew there had not been enough time. At best, we had plugged a hole in the dike. Or had we? Be glad for the time spent, I reminded myself. Francisca squeezed me so tight that she trembled. I knew she didn’t want to let go. If I could have left part of myself there, a hand, a talking mouth, anything … I would have.

My overnight visit rejuvenated both Roby and Francisca, leaving them with thoughts and ideas to ponder. Roby had listened carefully, taking elaborate notes. That night, he scribbled my answer to one of his questions on a large piece of cardboard and pinned it to the wall.

“The teacher and the student draw from the same well; they know the same things … only the student is not aware of what he knows.”

After his wife fell asleep, he left his bed and sat in the kitchen. He played the tape recordings of the overnight discussions and studied his notes. He wanted desperately to have the presence of mind and depth of understanding to help his son. Roby tried to memorize the truth rather than find it within himself.

Francisca, awakened by the drone of the recorder, rolled onto her back and stared at the shadows on the ceiling. She knew Roby wanted to absorb it all, inscribe each insight permanently into his brain. Her fingers slid across the cool sheet until they encountered the warm, lingering imprint of her husband’s body. She rolled over, squeezed Roby’s pillow to her bosom and pressed herself against the lightly heated portion of the sheet. Her limbs were like lead weights, yet she felt aroused. Francisca wanted to drag her husband out of the kitchen, but she buried the impulse as she had done before. Robertito. First Robertito. Her eyelids closed slowly. She concentrated on visualizing her son’s lips; how they might move if he could talk. But they remained sealed, even in her fantasy.

The Sotos continued working for several more months. Robertito allowed some physical contact. He permitted Francisca to hold his hands as they jumped together on the bed or rocked to music. He did not resist his father, who lifted him off the ground and swung him in circles. Yet he pushed them away if they tried to hug him. Robertito learned to flip a light switch and did it automatically whenever he entered a dark room. The Sotos cheered their son’s modest movements until they judged them, seeing these victories as insignificant conquests for a year and a half of intense input. They pushed themselves and their son for more. Food, given and then withheld, became a growing dynamic in the sessions. He rebelled against the pressure. The program became less regulated and more chaotic. Robertito ran through the house for hours until they could contain him in his room. He smiled and giggled, but did not direct any energy toward learning. He still viewed the world from the corners of his eyes and still flapped objects. Francisca and Roby’s confidence eroded. Embarrassed to ask us for more help, they began to search elsewhere.

The doctor that Roby contacted in Russia sent data on his experiments with B15 and autistic children. Interesting, but inconclusive. Roby’s correspondence with professionals in England yielded volumes of literature. Their techniques to his dismay, mirrored key elements of behavior modification. But then, in the course of his research, he uncovered an article about a special clinic in the Southwest which riveted his attention. The doctor theorized that autism came from an allergic response to food. The facility focused on nutrition related to maladaptation of food, metabolic malfunctions, enzyme deficiencies, neurological allergies and the like. The physician claimed successes from their experiments. The biochemical aspect fascinated Roby. Could it be so simple? Delete a certain food and Robertito would become normal? Give him an injection and he would look directly at people?

He didn’t remember his annoyance, almost contempt, for a parent group that championed such a concept. While they lobbied for legislation for research and prayed for the penicillin of autism, their children drifted away, finally being placed in residential settings, a hip, Madison Avenue medical term designed to camouflage the stone walls, barred windows and locked doors of an institution. He didn’t recall his research into mega-vitamin utopias that could not present him with one successful patient in the flesh. Rather than be choked by the memory of such information, Roberto Soto inflicted himself with a minor case of amnesia so that he could chase the rainbow. An instant cure! Images of Robertito talking, riding a bicycle, playing baseball. Why not? Hadn’t he and Francisca paid their dues?

Quickly and efficiently, Roby made all the arrangements; Alicia and a cousin to cover the business, plane tickets to Kansas, new clothes for their son, duplicates of all Robertito’s evaluations and tests. The clinic required six weeks for their study, six weeks to experiment with a wide selection of foods while monitoring the child’s blood and urine. Six weeks! For Roby, that was an instant and yet.,. forever.

Francisca watched her son lying on the table. He flapped a string which she had provided. He smiled as he rolled his head from side to side, obviously content; Robertito, a dreamer adrift on his own fluids. The bubbling sounds reverberating in the stainless steel tray distracted her. A nurse, her eyes obscured by heavily tinted glasses, slid two hypodermic needles into the boiling water. She appeared so precise, so disciplined to Francisca, though her efficiency verged on the point of rudeness when she neglected to greet Francisca and her husband as they entered the examination room with their son. The woman spoke to one of the doctors in the room. He, too, seemed efficient; no wasted motions, very professional. He squinted his dark, beady eyes as he watched their son; the young doctor was somewhat aloof, but scientific in his posture. His layered haircut, tanned skin and impeccably pressed uniform exuded success, affluence and respectability: traits that Francisca had been taught to trust. Yet, some of the very aspects which reassured her simultaneously alienated her; the cool, white tiled walls, the chrome cabinets, the plexiglass tubes, the digital scanners and the two cushioned tables neatly enshrouded in paper-everything so antiseptic, so impersonal. She dredged up her fantasy of a morgue, then erased her vision, frightened by her own imagination. When two additional nurses and another doctor arrived, she moved toward the side of the room. Though she did not understand one word of English, she followed their conversation intently, hoping to sedate her nervousness with the tone of confidence and authority in their voices.

A second doctor kept pushing his gray unkempt hair out of his eyes. He never looked at the others as he talked; his eyes jumping in their sockets as if punctuating his phrases and sentences. He picked at his Walrus mustache constantly. Roby had met him when they first arrived. He liked this man for what he considered to be silly reasons; this physician was less than perfect-disorganized and idiosyncratic, rather than rehearsed and mechanized.

Dr. Dugan turned to Roby and Francisca suddenly and smiled. He had forgotten about the boy’s parents, never once surveying the room beyond the specimen on the table. Roby nodded several times, flattered that this man departed from his intense conversation to be courteous. Francisca felt momentarily relieved.

The other doctor and nurses, under the direction of Dr. Dugan, proceeded to check Robertito’s eyes, ears, heart, blood pressure, and reflexes. The little boy pulled away sharply several times, cuddling himself into a fetal position as protection against the probing. Then he relaxed, preoccupied again with the string while his body remained passive, his arms and legs seemingly disconnected and limp. He made a soft, gentle cooing sound as he smiled at his fingers.

The preplanned activity in the room, orchestrated and executed in a precise ritual, was disrupted by the noisy entrance of a portly, jovial woman in her late forties.

“I mean, after all, first the car, then the traffic, then no parking place … one catastrophe after another. You know, I’m not a negative person, but…” She stopped as soon as she became aware of the serious expressions on the faces around her. “I’m real sorry if I’ve…”

“It’s okay, Mrs. Andrews,” the well manicured doctor said. “We’ll make out just fine, won’t we? Good. Now if you would just introduce yourself to Mr. and Mrs. Soto, we can continue.”

The woman spoke to Roby and Francisca in Spanish, explaining she had been hired as a translator to help them. Francisca complimented her on her accent, at which point Mrs. Andrews began telling her life story.

Dr. Dugan interrupted her. “Now if you could ask the father to help us hold his son while we take blood.”

Roby, in response to the request, fixed his hands over his son’s shoulders as the other clinicians placed their hands over the boy’s arms and legs. Using a special instrument, the nurse with the tinted glasses lifted the hypodermic needle from the tray and held it aloft until it cooled. Her heels clicked on the ceramic floor as she approached the table. Her movements had all the grace of a wind-up toy. Roby stared at the reflection of his son’s face in her lenses. She whipped a small rubber strap from her breast pocket, wrapped it tightly around Robertito’s biceps and then inserted the needle into his arm. The little boy lunged forward, jerked his head spastically and screamed. His fingers grabbed the waxed paper beneath him. Francisca gouged her fingers into her thighs as she forced herself to watch.

The nurse shook her head. She hadn’t located the vein. Dr. Dugan nodded as he locked the child’s leg between his arms. Roby, obeying an implicit command, pressed his son tightly against the table. The boy struggled and cried as the technician probed his arm six times, still unable to locate the vein.

When they finally released Robertito, he whimpered like an infant. His lips puckered, sucking and kissing the air. His delicate fingers gently scratched the material at the bottom of Dr. Dugan’s shirt. Mrs. Andrews watched the boy’s hand, mesmerized. Was this disconnected, almost loving, gesture his way of pleading for no more? She turned to the nurse, then to Dr. Dugan. They ignored her. She had been hired to translate, that’s all, to translate. Her eyes focused back on those little trembling fingers. Mrs. Andrews called herself a coward and closed her eyes.

The Sotos tried to calm their son. Roby picked up the string from the floor and deposited it back into Robertito’s hand. The little boy flapped the string faster and faster, oblivious to everyone in the room. His eyes glazed as he withdrew from the hostility of a world he did not understand and found a place deep within himself to hide.

The Young Physician consulted his watch and sighed loudly, purposely communicating his displeasure. Dr. Dugan heard nothing, preoccupied with examining both of Robertito’s arms, then the bottoms of his feet and his neck. He decided they would take blood from his neck, from the bulging, pulsating vein in easy view. Mrs. Andrews translated the doctor’s intentions.

Roby glanced at his wife. Their eyes locked. They begged each other for some alternative, but their lips remained sealed. Somehow, they could not let go of the rainbow. The nurse indicated that Roby should reapply pressure and hold his son. The other nurses and two doctors fixed their grips. Robertito squirmed, responding to the pressure immediately. The first nurse checked the needle against the light.

“We don’t have all day,” the young doctor snapped at the nurse. Dr. Dugan eyed his associate, then twirled his mustache, immediately drifting into his own thoughts, which took him far away from the examination room.

The nurse glared at the young physician. She slowed her movement in obvious defiance. In a haughty gesture, she snapped her wrist and, using the hypodermic needle like a fencing saber, she pierced through the skin in the child’s neck and punctured his vein. Robertito’s terrified eyes swelled from their sockets. He screamed at the top of his lungs. The world inside that he sought to control, the internal universe that he called his home, had been invaded. The muscles in his neck and along his arms spasmed as he tried to free himself; he panicked without understanding the panic, scared, alone, trapped by an octopus of hands and arms he could not comprehend. Roby tried to talk to his son, but his voice failed him. Francisca began to cry.

The nurse withdrew the needle once the glass tube filled. The little boy continued to tremble even after they released him. He gasped for air as his The nurse withdrew the needle once the glass tube filled. The little boy continued to tremble even after they released him. He gasped for air as his

Without words, without the tools to help him understand, Roby agonized over his realization that his son was trapped with the horror and the pain inside. He could never explain it to him. Robertito would never understand. Would his son always wait now, frightened and defenseless against a violence which would just randomly, nonsensically, without warning attack his soft, gentle, self-contained world? Roby could protect him from the outside, he assured himself, but what about the demons they let loose inside?

Dr. Dugan checked the child’s pulse, then prepared another needle.

“What’s that for?” Roby asked. He waited precious seconds while the translator repeated his question.

The physician mumbled his answer to the floor without looking at Roby.

“The doctor says it’s a tranquilizer. To help calm your son,” Mrs. Andrews restated in Spanish. Then, daring to go beyond his words and add her own, she continued: “He’s concerned about the rather extreme reaction, I think.”

As Dugan approached the boy, he sprayed some liquid from the tip of the needle. He stood over Robertito, dazzled by his constant motion. The nurse rubbed the child’s arm with alcohol. Francisca brushed past the technicians. She placed her hand on the prepared spot and shook her head.

“No mas inyecciones.” Her voice quivered in contrast to her aggressive body language. Mrs. Andrews translated the words instantly in apparent support of Francisca’s position. The doctor nodded, shrugged his shoulders, then retreated to the medicine counter.

In the motel, later that same day, the Sotos watched their son pace the room. His lip curled. He kept slamming his chin with the back of his hand. He pushed his parents away every time they approached. His legs moved awkwardly, jerking in a peculiar, frenzied fashion. His chest still heaved. His eyes fixed in a frozen, wide-eyed stare.

When they tried to dress him in pajamas, he ran to the other side of the room and pushed himself into the corner as if trying to hide. Occasionally, they heard a small, infantile whimper escape from his throat.

Francisca kept speaking to her son. No more needles in his neck or arms, she promised. No more restraints. She knew he could not understand, but she couldn’t stop herself from talking. Roby watched her. He wanted to wish the day away, to erase it forever. He knew they had violated all the trust and acceptance that they had worked so hard to establish with their child.

The tests began the next day. They drew blood only from the tip of Robertito’s finger, which he accepted passively. But the trauma of the first day lingered, the calm, peaceful expression gone from his face, the gentle, rhythmic motions thrown into a frenzied high gear. Using three test foods each day, they recorded his blood, urine, behavioral changes, color of face and other factors deemed a reaction. The seventeen foods out of sixty which tested reactive were stripped from his diet.

When they returned to Mexico, they observed their son diligently, hoping for changes which never came. Despite an altered diet, Robertito’s response to the world remained the same. They tried to re-institute the Option Program, but felt inadequate to the task.

Robertito’s anger and unhappiness distressed Francisca. She cringed when he began hitting his chest as well as his chin. When she put a towel under his polo shirt, the little boy found another part of his body to assault. Both she and her husband noted, unhappily, all the black-and-blue marks in both areas. His erratic behavior unnerved her. Some days she watched him cry for hours, feeling her own helplessness again like those months following his birth. On other days, he smiled suddenly, then giggled and laughed for four to six hours.

Robertito’s anger and unhappiness distressed Francisca. She cringed when he began hitting his chest as well as his chin. When she put a towel under his polo shirt, the little boy found another part of his body to assault. Both she and her husband noted, unhappily, all the black-and-blue marks in both areas. His erratic behavior unnerved her. Some days she watched him cry for hours, feeling her own helplessness again like those months following his birth. On other days, he smiled suddenly, then giggled and laughed for four to six hours.

Eventually, the little boy with dark eyes and perfectly sculptured features relaxed, but he no longer ventured out from behind the impenetrable wall.

NEXT

↓