November 24, 2014

A Miracle To Believe In – Chapter 8

The package remained unopened, though a student had sent it to me over a week ago. I carried it every place I went. Each time I entered the car, I placed it conspicuously on the seat beside me. Before I went to bed each night I stared at it on my bureau, but the weights of my eyelids always managed to close me down. The inevitable juggling between the Soto house and my own, intermixed with the very small group of students I wanted to maintain, combined with my intermittent attempts to write, resulted in a twenty-hour work day. The backlog from setting up the Robertito program had many reverberations. Suzi and I had to set aside special times each day to be with our children, not wanting any lapse in their access to us or our joy in being with each other.

The soft cushions of the Sotos’ couch cuddled my body like a womb. When I broke the seal on the manila envelope, a London psychiatrist’s notes and transcribed dialogues fell into my lap. He had studied with me several months before, trying to modify his classically Freudian background with a more loving and non-judgmental style of therapy. He joined a parade of Europeans who visited with us recently in New York. Although I had worked with groups of professionals, as well as non-professionals, in the States, these individuals’ passionate wanting and openness gave our teaching sessions a tremendous thrust. Since my commitment to supervise their sessions with clients predated our involvement with the Sotos, I promised myself to deliver a complete commentary on this man’s transcripts.

The clock on the wall reminded me of my two o’clock appointment. The Soto house was quiet as I waited for the man who was to do Robertito’s first New York psychiatric evaluation. Roby constructed shelves for toys in the basement. Francisca stayed with her son in the special room set aside on the second floor. Each time Robertito made a noise, I heard his mother imitate him. We had all agreed not to begin the program until all the psychological and psychiatric work-ups had been completed, but I found myself laughing, fully aware that “Mama” was cheating. She couldn’t wait the two more days. Each morning she requested another dialogue session, wanting to move herself as fast as possible. Her tension had subsided, partly because she had worked through some unhappiness and partly because she felt sheltered by our input.

The accepting attitude presented in the house had already affected Robertito. Although he remained totally encapsulated in his world, he appeared more relaxed and happier. Even Charlotte seemed more comfortable, though she fenced during our first session rather than confronting her own problems.

Returning to the material from England, I moved quickly through the first section of our dialogue. He had really understood. With the exception of one attempt to manipulate and direct his patient, his questions came from a clear and nonjudgmental place. The slam of a car door jarred my entrance into the second section. I leaned over the back of the couch and watched a very specific human being walk up the driveway. A thick, ten-inch long, red beard meshed with a full head of red hair. Everything about this man, from his medium frame to his single-breasted suit, seemed dwarfed compared to the impact of his redness. His face appeared lost like a rubber mask set too deeply behind brighter accessories. The Rip van Winkle of psychiatry. “I love it,” I said to myself, admiring his peculiar presence.

Just as he was about to knock, I opened the door.

“Paul Goodman,” I said, extending my hand. “We really appreciate your being here.”

He looked up at me, shook my hand rather studiously, then entered the room. His eyebrows lifted; his forehead furrowed. For a moment, he reminded me of a hairy Woody Allen doing a Bogart routine. But then a special softness penetrated Dr. Goodman’s serious visage. “It’s a real opportunity to see your work first hand,” he continued. “Rita talks about Option with the staff at the clinic, but we, er, use rather more orthodox methods with our cases.” He flashed a polite smile. “Child psychiatry is not quite an exacting science.”

We discussed the general form of his psychiatric evaluation and our need for precise base lines and details. I offered to pay him, but again he refused. “No,” he insisted. “If you can do all this, I’d like to do something too.”

Paul Goodman made the primary diagnosis of early infantile autism. “Robertito had not progressed beyond the autistic phase of development of the first few months of life. A secondary diagnosis of mental retardation cannot be ruled out.” He considered the lack of language to be a “poor prognostic sign.” In each area, his analysis concurred with the endless stream of reports from other physicians.

He summarized his views of Robertito’s parents after interviews and lengthy observations. “Mrs. Soto presents as a warm, nurturing mother whose relationship to her son seems to have in no way given rise to his difficulties. Mr. Soto, as well, had always been and still is concerned and involved with his son.”

Later that evening, after Paul left, Laura arrived, bringing Bryn, Thea and Raun. With Francisca and Roby joining, we held a surprise birthday party for Charlotte. The cake and candles had an emphatic effect on her, but the special gifts from the children overwhelmed her. Bryn presented her with a small pennant on which she had stenciled Charlotte’s name. Thea painted a series of dancing figures on cloth. When assembled in a row, they spelled out the letters of New York. Raun dropped a huge card into her lap, which he had painstakingly signed.

Charlotte looked at these people, these strangers whom she had known for less than one week. It didn’t make any sense. Why had they gone to so much trouble … for her? Charlotte believed she had to grab everything she wanted. Take or be taken. There’s a winner and a loser. Charlotte wanted to give, but within specific limits. She had also come to New York to avoid the surveillance of all those eyes guarding her like a school girl in silent tribute to her patriotic husband, a soldier stationed in the Pacific.

Raun jumped into her lap, sensing her ambivalence. “Charlotte, aren’t you happy?” he asked, his dark-eyed, penetrating glance riveted to hers.

“Of course I am,” she answered. Raun twisted his mouth into his cheek. He knew she had not delivered the complete truth.

Thea slid off the couch and walked slowly toward her. She approached shyly. Then in an uncanny, intuitive gesture, she stroked Charlotte’s arm. The young woman gaped at Thea, who smiled self-consciously but continued to express her tenderness. The exchange caught everyone’s attention. Conversation ebbed and died. In the silence, Charlotte Medina grabbed Thea, pulled Raun tightly to her and began to cry.

Several hours after the party, in a telephone conversation with Laura, she complained that no one really cared about her.

On Friday, we had a complete neuro-psychological examination done on Robertito. The following day, we delivered him to the offices of Dr. Carl Yorke for a complete developmental battery, perhaps the most significant external reference point for our program. Charlotte accompanied us, alleviating the need for another translator to work with the doctor. After a preliminary observation period, Carl eyed the little boy with great interest and compassion.

“He’s very low functioning, amazingly low functioning. Of course I haven’t worked him up against the scales and developmental graphs, but…” He stopped and shook his head. “Very low functioning. Tell me again, what do you hope to accomplish with this little boy?”

“We want to see if we can help him come to our world, but first we go to his,” I said.

He had not heard my last words. “He’s an amazingly beautiful child. You know, I’ve seen hundreds of autistic children. He’s a bit different. Some of them are really abrasive, aggressive, hard to like. Something about Robertito. He’s very likable. Kind of gets to you.” He leafed through the packages of forms on his desk. “Look, I’m going to have to use even more infantile tests than I anticipated. But I’ll still give you a whole series. You’ll have a lot of different, comparable base lines.”

For the next several hours, he put Robertito through an intricate series of tests. The child fascinated him, but his testing scores distressed him. “What you did with your son Raun was a miracle,” he blurted out after the examination, “but if you do anything, and I mean anything with this boy, there won’t be words to describe it. It would be beyond miracles.” He ran his fingers across the numbers and check marks written at the side of the charts and graphs.

“Have any rough figures?” I asked.

“I’ll have exact figures for you over the next few days. I have to compute all the reference points to give you a comprehensive profile, but…” Again, he stopped. He scratched his head and moved his chair closer to me. He muted his voice. “It’s almost an embarrassment to put down an I.Q. It will probably fall between 7 to 14.” He shook his head. “Barry, I have been testing children all my life and this is the lowest functioning child I’ve ever seen. Here, look,” he said, pointing to the figures on two developmental scales, “the boy’s over five and a half, yet his receptive and expressive language development is at a two-month level. His lag in social development is just as astonishing.” The doctor scanned two graphs again as if searching for some noted accomplishment he might have overlooked. “It’s very sad because he’s really a nice boy.”

Yorke’s formal report was thorough and detailed. His scoring and psychological evaluation had been based on six major standardized screening tests for young children at various developmental stages. He also wrote a concise needle-point log of Robertito’s behavior with descriptions devoid of the usual psycho-medical vocabulary.

“Throughout the testing, Robertito never uttered a word. He spent a great deal of time on the psychologist’s desk, either sitting or standing. He would wander around the room. He would put his hands over his ears or his mouth or he would run in circles. Occasionally, he made random sounds. He would rock on the floor. Occasionally, he jumped up and down. Sometimes he would just spin around.

“Personality characteristics: Robertito is pretty obviously an autistic child and it was noted that there was no indication that he would listen to most commands. He barely ever responded to auditory or visual stimuli. He did not and does not relate much to anybody and, at present, is not saying any recognizable words. He does not seem to either look or listen to people or touch them. As a matter of fact, when he is hugged, he pushes people away. He certainly is much more occupied with objects than with people. He is excessively motoric, but on the positive side it was noted that he never made any strident sounds and there was something likable about the boy. Although he was active, he was not annoying. He was very energetic and most of the time was quite restless. Never once, during all the testing, did he make any specific, recognizable sounds in either Spanish or English. He did not echo any sounds and spent a great deal of his time spinning around. In general, he did not seem to have any particular orientation.

“He is most impaired in his language development. His receptive-expressive language was on about a one- or two-month level. It was noted that his activity did not stop when he heard sounds. It was noted also that he did not give direct attention to other voices or appear to be listening to a speaker. He very infrequently ever looked at anybody’s face or looked into the speaker’s eyes or looked at his lips. He did not turn deliberately toward the sound of a voice or look out in search of a speaker. He did not become frightened or disturbed by angry voices.

“In terms of his expressive language, it was noted that he did not respond to bell ringing, did not laugh, turn his head or say any two-syllable sounds. He does not imitate any speech sounds either. Occasionally, he coos or babbles or laughs to himself, but he doesn’t laugh while playing with an object.

“In terms of his intellectual ability, he is currently functioning on about a nine-month-old level. He passed all tests on a seven-month level, but failed all on a ten-month level. The kind of tasks he did accomplish were motoric tasks such as pulling strings, playing with a string or securing a peller. He could not ring a bell by copying someone’s actions. He could not adjust to gesture or words. While playing with cubes, he could not take three cubes. He could not do any tasks requiring him to imitate anybody’s behavior.

“From a social point of view, it was noted that he does not ask to go to the toilet, he does not initiate any play activity, he cannot take off his coat or pants and he cannot get a drink of water. The boy is not toilet trained, he cannot dry his own hands, but he does seem to avoid simple hazards, i.e., a pile of blocks in the middle of the room. He cannot relate experiences. Obviously, he cannot play with other children.

“In terms of gross motor coordination, it was noted that he can broad jump, that he can jump in place and he could walk up steps. He cannot pedal a tricycle, balance on one foot for one second or kick a ball or throw a ball. He seems, also, unable to walk backwards.

“In terms of his fine motor coordination, it was noted that he can scribble, that he can build a tower of about eight cubes, but he cannot imitate a vertical line or dump a raisin from a bottle spontaneously or even after it had been demonstrated. He cannot copy a circle or make a bridge of three blocks.”

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