November 24, 2014

A Mircale To Believe In – Chapter 10

Our pattern of living and working together meshed more organically during the second and third weeks. Suzi and I introduced our children as observers in Robertito’s sessions, orienting them as helpers and teachers. We took the Sotos to the health food store, the local fruit stand, the bank, the drugstore and dairy market, often sharing our car with them so they could move independently. Laura traded saxophone lessons for Spanish lessons with Charlotte. Francisca registered for a course in conversational English at a local high school. Roby constructed a balancing stand, an incline board and other accessories to help his son. And Robertito, in spite of our willingness to accept the status quo, continued to progress, not in big leaps, but in small steps.

As the child permitted more physical contact, Roby escalated the light gymnastic segments of his work sessions. He held his son upside down while carrying him back and forth across the room. With the help of Francisca, they placed Robertito on his father’s back for some age-old horseback rides. Although he made no effort to hold on, frequently falling when Roby turned, the little boy seemed contented to remain on top of his father’s body. They jumped together on a mattress we had placed on the floor. Roby wrapped his arms around his son’s chest and twirled him in playful circles.

Robertito appeared quite happy and, even with only fleeting eye contact, his awareness of us had dramatically increased. Rather than remain curled inside of his own protective shell, he allowed himself to be passively manipulated by us, occasionally showing passing signs of involvement.

Early on Thursday morning, when the sun sprayed the room with its sharp light, Robertito pulled away from his father and paced while flapping both hands. “Okay, you want a massage?” Roby said with outstretched arms. “Come, I will help you.” But when he tried to secure his son’s hand, the little boy twisted his body sharply to avoid contact. He raced around the room, gliding along each wall. Then he stopped abruptly, stared at the wall and touched it with his nose. Robertito moved the upper portion of his body to the left, then to the right; his face always in physical contact with the wall. Finally, he pulled himself twelve inches away and proceeded to walk alongside the yellow plasterboard barrier, tracking an invisible course with his index finger. At the corner, he made a half-turn and continued along the next wall. The windows confused him. He floundered, impatiently walking in a wide circle until he connected with one of the other walls. to the side, staring hypnotically at the light bulb.

Francisca bit her bottom lip. The momentary event was awesome to her. For a few seconds they had reversed roles. He had followed her instead of her following him. No one pushed her son or prodded him. He had dared to take one small step across a very tenuous and unfamiliar bridge.

Laura’s concerts for Robertito had a definite effect, yet I sensed her preoccupation, at times, in the sessions. Nevertheless, the little boy’s attention to music expanded appreciably in response to her efforts. He used his body more easily as an instrument to echo rhythms. Laura also worked intensively on his body. Her deep massages of his hands had such impact that often Robertito did not flap at all for the following fifteen minutes.

After her session, instead of giving her feed-back, I asked her how she saw herself in the teaching situation. Laura laughed. She knew I knew. “When I’m screwed-up, you always know.” As we walked together in the park, she avoided my eyes, feeling transparent. My initial observations about her growing effectiveness as a mentor fell on deaf ears. Every time she looked for proof of her inability to be loving, she found it and ignored everything which suggested the contrary. But then, during the next two hours, she confronted, more directly and more openly than before, her fears about being hard and unmotherly. The expectation of having immediate affection for Robertito traumatized her initial contact when she felt uninvolved, more like an observer than a participant. What had she believed? If she didn’t love him now, she would never love him. Why did she believe that? Laura had no reasons, no answers except her fears. “If I don’t push myself now, it will never happen!” In further exploration, she realized those very demands intruded in her flow with Robertito. Every time she judged herself in a session with him, she altered her focus, withdrew and, in effect, cut herself off from the very things she wanted … to be present and loving. When our session ended, Laura admitted to feeling more relaxed, but not totally absolved from her self-criticism. But in the course of the dialogue, she did liberate herself from the need to fall in love instantly with Robertito … for the moment, being an accepting and effective teacher would suffice.

Some pronounced revelations surfaced during Charlotte’s contact with Robertito. Sometimes, when a warm smile decorated her face, she displayed a wonderful, intuitive ability to move him. But more often, the impatience and discomfort which curled her lips downward blocked her ability to function sincerely in our teaching environment. Even though she imitated him, the rigidity of her body language betrayed an inner annoyance.

As I watched the young woman with my little friend, I noticed several things which amazed me. He made the least amount of contact with her in comparison to the others in the program. He whined and cried in Charlotte’s presence while maintaining a more mellow mood during his sessions with others. Robertito locked himself into his “isms,” running and murmuring nonsense syllables with marked intensity, almost as if he responded directly to her attitude and discomforts by further trying to insulate himself. Somehow he knew. Somewhere in that little brain a very important radar system remained operative. He adjusted intuitively to the tone and texture of any environment he entered without ever having to look at anyone or hear anything. He simply knew.

At the beginning of the fourth week, I checked his hands. His right side appeared slightly more sensitive to the pin pricks, though his sensory intake was still severely deficient. Nevertheless, we celebrated every sign. I experimented with a series of instrumental and vocal sounds, finally determining that Robertito exhibited more susceptibility to high sounds and whispers. We adjusted our conversations and teaching patterns accordingly. The lack of strength in his hands still concerned me. When I tried to lift him as he held onto a pole, he dropped off immediately. He lived in a tensionless body with little muscle control, the legacy of his own inertia. We designed a series of tug-of-war and push-pull games with him in order to strengthen all his extremities.

On a Friday night after a seven-hour stretch of observing and participating, I rose to my feet, kissed Francisca and then tapped Robertito on the arm. To my amazement, he tapped me back without ever looking at me. His eyes stared out the window. I tapped him again. He returned the touch. We continued for fourteen consecutive times until he babbled “eee-o” and curled into a circle on the floor.

“C’mon, we’re late,” I chimed, tugging on Suzi’s arm as we half-jogged down the long green corridor. We negotiated several quick turns, avoiding people entering and exiting the hall.

“One day we’re going to cut our schedule in half,” Suzi said. She ducked her head as a messenger whizzed by with a carton on his shoulder. “How come I’m always breathless?”

“Not enough exercise, Suz,” I grinned.

We jumped onto the elevator just as the door whipped closed. “Let’s see,” I mumbled, searching the buttons. “There it is … twenty-seven.”

“How’d the conference go this morning?” Suzi asked.

“Good. A lot of students were very receptive. Things are changing.” I kissed her on the nose.

After making several stops for other passengers, the elevator thumped to a halt on the twenty-seventh floor. We bolted into the hallway, read directions to locate the rooms by number, then turned left down another green corridor.

We pushed open the dark wood doors, entering the small lobby rather abruptly. Soiled reprints of cityscapes, fixed in metal frames, decorated the walls. Blank-faced people sat stoically on wood benches. An old man leaned against one wall and coughed uncomfortably.

The woman behind the reception desk never looked up once. She leafed through a newspaper with one hand while she fluffed out her hair with the other,

“Hello,” I said. No response. No eye contact. “Classically autistic,” I diagnosed silently. Her “isms”: page-turning and hair-fixing. I imagined a room filled with newspapers and hair spray. We would squat, face each other and do her self-stimulating rituals together. Perhaps, one day, she would look at me.

Suzi nudged my arm.

“Oh yes,” I murmured, then addressed the receptionist again. “We’re here to see Joan Easter, please.”

The woman retained her downward posture, still avoiding direct eye contact. “Do you have an appointment?”

“Yes,” Suzi answered. “Could you inform Ms. Easter that Barry and Suzi Kaufman are here.”

A grunt served as the reply. She waved to Suzi and me in crude sign language and directed us to an empty couch. We had waited three weeks. Everyone had expressed optimism about our grant proposal. Although we had received many rejections in response to our grant applications from a host of other public and private organizations, we had a certain alliance with Joan Easter. Her department had known about us even before we had applied for funding. Their persistent encouragement and aid in writing the proposal supplied us with a new impetus. And this attempt for funding was more personal. Perhaps that’s what we lacked on previous occasions. The money would not only enable us to work with more children, but it would ensure the continuity of the Soto program. Without it, we would have to turn away once we depleted our own rapidly diminishing funds.

A woman called our name, ushered us down another corridor, then deposited us into the large, windowed office of Joan Easter. A print of a Modigliani painting dominated the room. Color photographs of children decorated the walls. A Chinese urn occupied the top of one file cabinet. Piles of grant proposals were stacked on top of one another.

“I like it,” Suzi acknowledged enthusiastically as we both waited for Ms. Easter’s arrival. The handmade pottery and other personal objects on display captivated Suzi. She searched for the match, wanting to find a bond between this woman and us; a bond less verbal and more binding than the actual grant proposal.

“So we finally meet,” Joan Easter declared, entering the room with definite authority. Her handshake had a specific power. Her grip lingered longer than the traditional time. She wore clothes which did not conform to her body. They accented the business atmosphere. And yet, an inescapable femininity remained. “I feel I know you both already.” She smiled warmly.

“You’ve been fantastic in helping us prepare the forms,” Suzi said.

At that moment, a dark-suited man entered the room. “Oh, let me introduce James Blackwell,” Joan Easter declared. “He’s the attorney for our group and I asked him to join us.” We exchanged greetings. Blackwell pulled our proposal from his case and detached his notes which had been pinned to the top. He adjusted his cuffs as he prepared to speak. Only his small mustache seemed incongruous with his Ivy League demeanor.

“I want both of you to know how much I, personally, admire your work,” he began.

“Yes, we all do,” Ms. Easter assured us.

“We’ve seen many proposals over the years,” he continued. “Yours was unusual. That’s why Joan brought me in on this one early. ‘Something special here,’ she said.” Joan concurred with an automatic smile, delivered on cue. “Now the problem is how we can modify this description to conform more to our committee’s perspective.”

“And just what perspective is that?” I asked, eyeing Suzi. The glow disappeared from her face.

“You have to understand, Mr. Kaufman,” Joan Easter replied. “We get forty to fifty proposals for every grant. Many come from the finest and most renowned medical institutions and schools around the country. Inevitably, you are going to be compared with them.”

“For example,” Blackwell interjected, “on your proposal, you talked about working with three or four children. To be frank, I thought you people had made a typing error … maybe you hid meant thirteen or twenty-three. But then Joan informed me, after talking with Mrs. Kaufman, that no typing error had occurred. That’s our first problem. The other candidates are willing to work with twenty to thirty youngsters for the same amount of money,”

“Mr. Blackwell,” I said, “our numbers are different for very special reasons. Most of those large institutions will do a teaching program with autistic, brain-damaged and neurologically impaired children for periods of four or five hours per day. There will be five or six students to each teacher. Perhaps, input from a speech pathologist or psychologist will provide each child with one or two hours of individual contact each week. Those programs operate five days a week … thus each child receives, at best, twenty hours a week in a group situation. We’re not talking about twenty hours a week in a group, but eighty hours a week on a one-to-one basis. We’re not talking only weekdays; we’re proposing seven days a week. We also want to train the mother and father, the sisters or brothers, the grandmother, the neighbor next door, so that if she enters the home, the environment will remain consistent. These are very special little human beings. You can’t hope to reach them in a behavioral group situation, especially on four hours a day. We’ve seen what’s done. Those children will probably require care for the rest of their lives. We’re suggesting a whole different alternative with a different potential.”

“Even so, Mr. Kaufman, the net cost per child per year in your proposal far exceeds your competition,” the lawyer noted like an efficient scorekeeper at a tennis match.

“What it would cost us to work with a child is less than this state pays to keep one child institutionalized for a year … and that’s a child drugged on Thorazine with little or no input. Over a lifetime care for that person will cost many millions. What we have proposed is, in fact, much more economical, where a child might not need lifetime institutionalization.” I paused.

“Well, yes, I can see your point, truly,” Blackwell admitted. He adjusted his cuffs again. “That, unfortunately, doesn’t alter the fact that the board will see your proposal with three or four children against a prestigious facility offering to work with a population of twenty or thirty youngsters.”

“Perhaps,” Ms. Easter suggested, “you could increase the numbers on the grant proposal itself to say … fifteen. Then, just begin with three or four.”

“Would we have to work up to the number indicated?” Suzi asked.

“Yes and no,” Joan Easter replied. “We’d expect you to try.”

It would be easy, I thought, to say fifteen or twenty. Why not? Satisfy their prejudice and begin. We already had Robertito. There were other children we had seen who we could now work with on a more intense basis. Maybe five at the same time. Maybe.

“What do you say?” Ms. Easter said, smiling.

“I’d like to say yes. You have no idea how much I’d like to say yes,” I admitted. “But, by diluting the contact, by trying to work with fifteen or even ten, we’d destroy each child’s chance. We would have worked with many and, perhaps, helped none.”

“Well, at least you do understand the dilemma. We’re on your side.” James Blackwell grinned ceremoniously.

“Well, let’s see how we can do on some of these other points.” He turned to page forty-seven in the proposal. “You have no provisions for a speech pathologist, a psychologist, or any psychiatric input. In fact, you suggest you would train high school and college students.” He smiled. “I think at one point you said if the dysfunctioning child is seven, you would actually try to train another seven-year-old to work with him.”

“Sure,” I said. “Children have special connections with other children … and children can be wonderful teachers. High school students and college students have been instrumental for us.”

“We know that,” he said. “That’s been part of your style when you worked with your son and other children. But, you have to understand, in a funded program, you must have qualified personnel.”

“I had a friend, Mr. Blackwell, who majored in psychology at college and did his post-graduate work in clinical psychology. He spent eight years reading all the appropriate books, worked extensively with laboratory rats and did a thesis on electro-convulsive therapy. When he received his license as a psychologist, he had never worked with one live human being. Joan Easter nodded her agreement, having reviewed thousands of graduate applications.

“And even if he had worked with people using behavior modification or a Freudian orientation, we would have to untrain all that training, all those beliefs. And I’m not sure how easily I could get a trained psychologist or psychiatrist to crawl around on the floor with a little buy or girl and quack like a duck.”

Joan Easter put her hand over her mouth trying to suppress a smile. James Blackwell adjusted himself in his seat. “I understand,” he said, “but many of those on the board and consultants to the board are medical people. To put it bluntly, they want to see their own kind participating in order to support such a proposal.”

“We’re not disagreeing with what you want to do,” Ms. Easter said. “But somehow, in written form, your ideas seemed quite … unusual to our people.”

“Are you trying to let us down easy?” I asked.

“We’re trying to work something out,” she insisted.

“But you encouraged us,” Suzi added, a slight strain in her voice. “You mentioned that many people here felt a tremendous enthusiasm for how we worked.”

“That’s absolutely true,” she responded, “but..

“What Joan wants to say,” the lawyer interrupted, “is that when the committee saw the same ideas in a formal proposal, suddenly they came to terms with the realities of your ideas and methods … no longer simply focused on a pretty story.”

“I hear you loud and clear,” I said. “Could you be direct and tell us exactly what you want us to do with the proposal.”

Blackwell pulled on his cuff, cleared his throat and began: “First, you have to include more children. Secondly, to satisfy members of the board, you will have to include more traditional personnel. I’m afraid the idea of having children work with children, even high school kids, won’t wash,”

“And that’s it?” I asked.

“At least on the major points,” James Blackwell admitted.

Suzi and I looked at each other.

“And if we made those adjustments, what do you think our chances are for getting the grant?” I questioned.

“Good. Better than good,” Joan said, dropping her shoulders in relief. “The first installment of the money could be processed in a matter of a month.”

I kept thinking of that little Mexican face, the perfect porcelain features and the gentle hands as Suzi and I rose to our feet. “I think we’ll have to pass,” I said.

“I really don’t think we could make such amendments,” Suzi added.

Joan Easter also rose. “Suzi, things move slowly. I’m sorry about this. Everything can’t change overnight.”

“I don’t believe that,” Suzi insisted, “If we did what you suggested, we’d have the exact kind of program we thought grossly inadequate for our own child.”

“It’s not a matter of compromise or morals,” I interjected. “If it would make them happy, I’d put a hundred and fifty down. But if we strip out the elements which gave us the opportunity to reach a child, then we have nothing left … but custodial care.”

“I don’t think that’s necessarily so,” Blackwell countered. “We all have the child’s welfare in mind.”

“I never questioned that,” I said.

“Those changes would not inhibit the child’s progress,” the lawyer insisted.

“Mr. Blackwell, have you ever worked with an autistic child?” I asked.

“No.”

“Have you ever seen one?”

“I’m afraid not,” he responded.

The room fell to silence. “We’d like to leave the proposal the way it is and let them decide on what we’ve presented,” I said.

Blackwell and Ms. Easter exchanged an uncomfortable glance. “Well, in that case,” Joan Easter said, “I guess I should tell you they’ve already rejected your proposal.”

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