Autism Treatment Center of America®
I_want_this_for_my_Son

A Miracle To Believe In

Chapter 1 Continued

MONDAY - The First Day

Sasha arrived first, her black shirt tucked neatly into her black pants, a green knapsack strapped tightly to her back. She might have been a pallbearer in a military funeral or a renegade bohemian from a Greenwich Village which no longer exists. Yet a soft, almost vulnerable smile tempered her harsh appearance. Sasha had volunteered to help with meals and the care of our children while we worked with the Mexican family. Since Bryn, Thea and Raun attended school until three in the afternoon, she delighted in having the opportunity to observe.

Several minutes later, a taxi deposited the Soto party at our front door. Jaime Ankrom bowed slightly as he shook my hand, then Suzi's. His plaid sports jacket framed a starched white shirt and tie. Wisps of hair barely covered his huge head, which sheltered deep-set eyes and offset thick jowls. With great dignity, he introduced Roberto Soto, a tall, handsome man in his late thirties. Dressed more casually in a walking suit, he bowed his head humbly as he took my hand.

Francisca, tall and full-figured, waited with her son. Long, silky black hair dipped just beneath her high cheekbones, accenting her classic features. She searched our faces carefully while being introduced. Her penetrating eyes peered boldly into ours. A hesitant, half-smile fluttered across her face.

Robertito bounced rhythmically up and down on his toes. He made a clicking sound with his tongue as he pulled at his mother's hand, obviously trying to release himself from her grip. Francisca resisted, knelt down and addressed him with great affection. Her subtle eyebrows and animated face accented each thought. But her words fell on deaf ears, her warmth never penetrating the invisible wall encapsulating her son. A great sadness clouded her eyes as she rose to her feet. Holding back tears, she avoided looking at us directly.

Still unresponsive and mute, Robertito continued flapping his free hand in the air.

Our guests seated themselves stiffly on the couch in the living room. We faced them in silence. Only soft smiles passed between us for those first minutes. Their sensitive faces rippled with moments of anxiety. Francisca tried self-consciously to stop her son's flapping hands on several successive occasions.

Suddenly, Roby swallowed noisily, then cleared his throat. He pulled a pile of documents from a large leather briefcase which he carried, then began to recount in detail their experiences with Robertito. Jaime meticulously translated each word, each detail, even the implicit attitude between the words. Roby gestured emotionally as he spoke. Each time he glanced at his son, his voice cracked, his eyes watered.

In combination, the papers presented a confusing computer-like smorgasbord of conflicting reports and diagnoses. Three described Robertito Soto as definitely autistic with a grim prognosis. Two labeled him authoritatively as severely retarded; one further suggested the boy was uneducable. Another hypothesized brain damage resulting from an undetected case of encephalitis. The most recent report talked vaguely about an atypical schizophrenic condition complicated by unknown biochemical irregularities. Pages and pages filled with complex four- and five-syllable words; abstractions grounded in theoretical judgments, several of which were concluded after only fifteen minutes of testing. Yet, not one of these clinical work-ups clearly suggested a mode of treatment. Not one analysis captured by description or inference the particulars of the child facing us.

As his father spoke, little Robertito sat awkwardly on the couch. He moved his body like an infant just learning to sit upright. An occasional murmur erupted from his throat. The incessant hand-flapping continued unabated. And yet, his face appeared serene.

"Senor Soto says these reports have not been very useful," Jaime translated. "No more useful than all the programs the boy has participated in."

"Ask him why he chose to show them to us in such detail?" Another pause for the necessary translation.

"He says he wanted to illustrate that they care very much for their son and did not come here as ... how do you say, as ... as innocent or naive people."

I nodded my head, peering first into Roby's eyes, then into Francisca's. We, too, had once jumped through the same hoops to no avail.

Quietly, like a cat, Sasha slipped into the room carrying a tray of coffee and tea. She also brought a large glass of juice for Robertito. Francisca immediately led her son into the kitchen, fearing he might suddenly decide to throw the glass or dump it on the couch. Often, when he finished drinking, he would relax his hand in an absent-minded fashion, allowing the cup or glass to drop to the floor. When they returned to the living room, Suzi sat on the rug beside Robertito. She stroked his leg very gently. When he pulled away, she smiled, slowly withdrawing her hand. Robertito seemed to increase the flapping motion.

As I turned to address Jaime, I realized when any of us spoke, we looked at the maestro instead of each other. Bending forward, I purposely faced Roby and Francisca as I talked. "Jaime, tell the Sotos that I very much would like to look at their faces when we talk, that our eyes carry very important messages for each other. Tell them our words are just one way to speak."

As Jaime translated, they smiled, nodding their heads affirmatively.

"And I will address you directly," I continued. Then I turned to Jaime. "Instead of saying 'they say' or 'Senor Soto says,' would it not be more direct just to speak their words?"

"Senor Kaufman, the role of interpreter is new for me," Jaime said. "I usually translate written matter. Your suggestions are helpful. I will learn these fine points ... ah, on-the-job." He smiled, enjoying his own ability to use idiomatic expressions.

"Okay," I laughed, deciding to make one last suggestion, "I want to address you by your first names, Please feel free to do the same. Most people call me Bears, a nickname Suzi and the children gave me. In our home, we're very informal. For the next few days, we will be one family with one common purpose."

Jaime considered my words, but insisted on addressing me and Suzi more formally as a sign of respect. The Sotos welcomed the warmth.

We decided to work directly with Robertito the remainder of the day, at least until dinner. Then, in the evening, we could deal with Roby and Francisca ... exploring their feelings and attitudes, all significantly related to any program they would institute for their son. We preferred to be alone with Robertito, without any distractions. We offered the Sotos our car to transport them to a local hotel. Jaime gallantly doubled as chauffeur.

Suzi led Robertito into the bathroom, the same one we used with Raun. It provided us with a simple non-distracting environment ... no dazzling wall pieces, no busy windows, no mesmerizing lights. The confined space also kept the child in close contact with us.

We sat opposite each other, our backs planted firmly against the wall. Robertito walked aimlessly around in circles. His body seemed clumsy as he tiptoed on the tile floor. Both his hands flapped vigorously. We began to note several distinctive particulars.

Robertito never looked directly at anyone or anything yet he obviously could see. When Suzi lifted an oatmeal cookie from her pocket and held it in front of him, he either did not see it or ignored it. Yet, when she brought it around to his side, he immediately turned and grabbed for it. Robertito absorbed much of his environment using peripheral vision. In that manner, he could easily watch his flapping hands at the side of his head.

Despite his preferences for perceiving the world tangentially, we did notice that he looked directly at the cookie when he grabbed for it, though he maintained that focus only momentarily. In another instance, when Suzi sensed him preoccupied with the faint sound of a distant siren, she snapped her fingers right in front of his eyes. No response. Not even a flutter in his eyelids or eyeballs. Apparently, he had the power to blind himself, to shut off his vision in order to concentrate on his other senses.

Although generally unresponsive to most sounds, this little boy paid careful attention to soft, almost imperceptible, noises. We turned on the tape recorder which we had placed in the bathtub. The room filled with the melodic and lyrical piano music of a Chopin's nocturne. Robertito moved his head from side to side. He made the strange clicking sound with his tongue. An awe-struck expression lit up his face. Something about his gaze reminded me of the peaceful, wide-eyed stare of a Tibetan monk.

We watched him be what he could be, do what he could do, and wondered about the doctors who once tied his hands to stop him from flapping, the psychologists who wrapped him in a rug and dragged him screaming across the floor, the behaviorists who slapped his hands and finally his face because he did not conform to a specific task. We thought of the physician who suggested electric shock treatment to correct all the "bizarre" and "intolerable" behavior. And so most everyone in little Robertito's world had played judge and executioner.

They defined certain behavior as good and other behavior as bad. Using those distinctions as commandments, they then took that as license to forcibly extinguish the so-called "bad" or inappropriate behaviors ... as if Robertito was not, in fact, at two and three and four years old, doing the very best he could based on his abilities and limitations. To treat a dysfunctioning child, who already displays dramatic difficulties in relating to our world, in such an abusive and hostile fashion raises serious questions. But the issue is side-stepped by the professional, who does not examine his own methods in the face of "no progress," but simply dismisses the child as uneducable or incurable.

At no time did we intend to manipulate Robertito physically, either to stop or to encourage any movement or response. The attitude of "to love is to be happy with" created the foundation from which we approached him. We had no conditions to which he must conform, no expectations which he had to fulfill. Most important, we would make no judgments about good and bad, appropriate or inappropriate. In effect, like all of us, this strange little boy did the best he could.

Respecting his dignity and his world as we had respected Raun's, we decided if he, too, could not join us, we would join him ... build a bridge through the silence, if possible, and motivate him to want to be here, to want to participate. Thus, we would, within the limitations of one week, try to create the same kind of easy, beautiful, responsive and loving environment as we had once done for our own son.

In joining him, we did what he did. When he flapped his arms, we flapped our arms. When he made the clicking sound with his tongue, we made the same clicking sound with our tongues. He toe-walked; we toe-walked. He granted; we grunted. With the exception of defecating in our pants, an activity he still maintained, we followed him, taking our cues as he presented them. We were really there, moving in earnest, participating as caring friends, trying to say, "Hey, Robertito, we're right here; we're with you and we love you," The session continued to the point of exhaustion. Eight hours later, a little after six o'clock, Suzi, Robertito and I emerged from the bathroom, The Sotos had already returned. They looked at us expectantly.

"Wait," I smiled, anticipating their questions. "We all had a very beautiful day together ... in the bathroom. After observing for several hours, Suzi and I joined Robertito. We did everything that he did with a loving and accepting attitude."

Francisca took her son's hand and led him to the couch. "Sienta-te. Sienta-te," she said firmly, yet affectionately. Then, turning to us, she asked, "Did he respond? And did he know you were there?"

"I know how much you want things for Robertito. We do, too," Suzi said. "At no time did he respond in a way we could understand. So we don't know if he was even aware of our presence." Suzi tapped her chest. "Somehow, deep inside, I know it counts. We have to trust that and allow what happens."

Francisca nodded her head, trying to camouflage her disappointment.

Roby began to speak rapidly and Jaime waved his hands to slow the burst of words. "We have met your lovely children. Bryn and Thea are quite beautiful and loving. Raun, well ...Raun is unbelievable. I never thought he would be ... be so, so normal. He introduced himself, sat on my lap, and asked to see Robertito. When I said you were with him in the bathroom, he shook his head like an old man and asked if Robertito was autistic."

Tears filled Suzi's eyes. "Wait," she said, "I want to get the kids. I know how much they wanted to meet Robertito." She called to them at the staircase. Little feet rumbled across the ceiling toward the stairs.

Bryn appeared, first. "Oh, Robertito," she exclaimed, "you're so cute." Thea and Raun followed. The children gathered around their strange new friend. They smiled and chatted with great excitement.

"Look at his fat cheeks," Raun shouted. "I just love them." Any child in the universe with chubby cheeks is automatically adopted by Raun as a special friend. Some children are excited by ice cream, others by toys-our son manages to be quite different most of the time. After a couple of minutes, Raun, visibly confused, turned to his mother. "Mama, why doesn't he talk to me? He never answers. When I tried to take his hand, he pulled away."

"Remember our talk, Raun," Suzi replied. "Robertito doesn't speak. Maybe one day he will, but right now he can't. He also doesn't like to be touched, but don't think it means he doesn't like you."

"Joanna and Brian didn't talk either," Raun declared, pondering his association. "Robertito's autistic like them!"

"Yes," I said. In a hushed voice, Jaime translated our conversation into Spanish.

Thea stood beside little Robertito and laughed warmly as she flapped her hands the way he did. It was her way of saying hello. For a moment, just a fraction of a second, he paused. It seemed as if, in that instant, Robertito actually looked directly at Thea.

As previously arranged, our visitors left for dinner and returned at eight o'clock. Raun had been put to bed. Sasha, with Bryn and Thea's help, guided Robertito into the den. The girls wanted to work with him; to join him in his world as they once did with their own brother.

As I stoked the fire, Suzi offered them organic grape juice, turned and mellowed like a fine wine.

"Are you still with us, Jaime," I said jokingly to the maestro.

"Yes, definitely, Senor Kaufman." This warm and unpretentious man seldom smiled.

I leaned forward, peered directly into Francisca's eyes, and asked, "How would you feel if Robertito never changed, if he could never do anything more than you see here today?" Jaime's eyes jumped back and forth, registering surprise at my question. Then, mimicking my tone, he translated it. Roby sighed. Francisca's face flushed; her eyes narrowed. An expression of great sadness and pain overwhelmed her face. Anger curled her lips. She fought her instinct to cry or scream or shout.

Again as gently as possible, I asked the same question. Jaime hesitated, then repeated it. This time, Francisca gave in to the feeling and sobbed heavily. Roby held his wife, barely containing himself.

When she regained her composure, she faced me and said: "It would be awful, terrible. Don't you think so?" And so began our first Option dialogue.

"Well," I said, "what I think is not as important as what you think. It's your son, it's your pain. What is it about being this way that is so awful, so terrible?"

"He can't do anything for himself."

"What do you mean?"

"He does not feed himself. He cannot dress himself. He is not toilet trained. He does not talk. I could go on and on."

"All right, what is it about all those things which he can't do that gets you so upset?"

"I want more for him," she said, crying again.

"I understand that, but wanting more for someone we love is different than being unhappy about not having more. What is it about all those things he can't do that upsets you so much?"

"Most children his age do many things. Although he's four, he's like an infant. People stare at Robertito, make fun of him. I can't stand it."

"Why?"

"He's not a freak. I don't want him treated that way."

"What do you mean?" I asked.

"The whispering. The pointed fingers. The laughter."

"What about that makes you unhappy?"

She glanced at Roby, who remained silent but obviously involved. "I ... I..." she stuttered, "I'm afraid it will always be that way."

"Why do you believe that?"

"Because I don't see any changes," she answered. "Because he gets older and older without learning new things."

"Since your fear is about the future, why do you believe if, up till now, he has learned very little or even nothing, that it means it will always be that way?"

Francisca looked at me, confused. "I don't know," she said. "I guess it doesn't have to mean it'll always be that way." She paused to rub her eyes. "Okay," she continued, grinning self-consciously, "but I'm still unhappy about the way Robertito is."

"What are you afraid would happen if you weren't unhappy about his condition?"

"Then, maybe, I wouldn't do anything about it."

"Are you saying by being unhappy, you stay in touch with wanting to change the situation?"

"Yes," she said.

Roby's face lit up, but as he raised his head to speak, I held my finger to my lips.

Directing myself back to his wife, I said: "Why do you believe you have to be unhappy in order to pursue what you want?"

"I don't," she answered, quite clear on that point. "But I guess I act like I do." She shook her head, "This is all very new for me."

"What is?" I asked.

"Well, if my son is sick and I am not unhappy, then maybe it would mean I did not care about him," she concluded.

"Okay," Suzi interjected. "Let me give you back your statement as a question. If your son is sick and you do not get unhappy, would that mean you don't care?"

"I don't know. I'm not sure any more," Francisca mumbled.

"What would you guess?" Suzi continued.

"The more I think about it, the sillier it is. Why do you have to be miserable when someone you love is sick? Sometimes you are so busy helping them, there is no time to feel sad ... and yet, you still care. I know, I had that situation once with my mother when she was very sick." Francisca smiled fully for the first time since her arrival. She kept shaking her head up and down.

I apologized to Roby for my curious finger, but thanked him for holding his comment.

He had understood. "Bears," he said, "I want you to know that each time you asked a question, I tried to answer it for myself. Each time, I found my own thoughts in Francisca's answers. Often I have worried about whether this will go on forever. Now, I feel different."

We continued the dialogues until three in the morning. Roby further explored his fears about the future, his concerns about who would care for Robertito when he died. He uncovered the belief that if he wasn't afraid of these possibilities, he might not do as much as he could. When I asked him why he believed that, he answered that he didn't know. So I asked him what he was afraid would happen if he no longer believed it. Immediately, he laughed. His answer was the same as before; the fear he might not do all he could. At that moment, as he came to understand how he frightened himself into moving, the belief and the fear disappeared. No, he assured himself, he did not have to scare himself to make sure he covered every base. In fact, he became aware that the fear of the future had actually diverted him from fully attending to all that he could in the "now."

I quoted to him the words of a wall poster in a friend's office. It read: "I'm an old man now. I've worried about many things in my life, most of which never happened."

Francisca reviewed her thoughts and feelings about being responsible for Robertito's condition. When she could not give one concrete example illustrating how she might have caused his problem, she blamed it on heredity. Why did she believe that? She didn't know. What was she afraid would happen if she no longer believed it? Her answer surprised both her and her husband. If she no longer believed it, then she would have another child. And how would she feel about that? Badly. Why? Because she did not want to stop trying to help Robertito. Why did another child mean that? It didn't ... necessarily. And so, piece by piece, she unraveled some of her fears.

At ten minutes to three, Roby suggested they leave. He carried his son to the car as I followed with his briefcase. Francisca, Suzi and Jaime joined us on the sidewalk.

"It has been a most enlightening evening," Jaime said, shaking my hand.

"Perhaps, later in the week, I will ask you some questions," I said. The others laughed as the maestro smiled awkwardly.

Roby grabbed both Suzi's hand and my hand. His arms trembled as he said: "Gracias. Muchas gracias." Without warning, Suzi kissed him on the cheek. Obviously very touched, he turned quickly to hide his emotions and slid into the driver's seat. Suzi then hugged and kissed Francisca. Jaime stepped back, anticipating her next move. Seeing his discomfort, she threw him a kiss.

"Nine in the morning," I shouted as the car left the curb. Time was so short, so limited. We wanted to cram as much into this week as possible.

Suzi looked at me with a knowing smirk, then she consulted my wristwatch. "I know exactly what kind of crazy week this is going to be. Okay, superman, if you can do it, I can too."

Chapter 1 Continued