November 24, 2014

A Miracle To Believe In – Chapter 19

They all cared just as intensely during the summer as during the previous months in which Suzi and I participated. Everyone still wanted the best for Robertito Soto. They still wanted the best for themselves. And yet, almost without anyone noticing at first, the euphoria of the first week deflated. The program tottered on good will until good will was simply not enough. The mechanics remained intact, but something less visible and more insidious eventually contaminated the program. The slide engulfed everyone; most of all our little friend and his parents, who, instead of embracing more of their dreams, found themselves witnessing the birth of a nightmare.

Notes, letters and progress sheets revealed pieces of a jagged puzzle, but the most telling commentaries came from the tapes of the Wednesday night sessions. As planned, Carol and Laura shared our home, enabling them to be within a five minute drive of the Soto house. Everyone helped in the continued training of Lisa as well as the more intense orientation of Chella, with whom Francisca assumed the dominant role as instructor and mentor. My brother and Rita called and visited periodically.

Francisca directed the flow of the first Wednesday night conference, using weekly data sheets as her guide for listening and discussing the specifics of her son’s behavior and progress. Although she learned to temper her comments with a smile, her loud and authoritative voice rippled across the tape with unabashed regularity. Laura counterbalanced the dominance of facts. She exerted a significant teaching influence by asking questions and relating symbolic examples. Carol resisted a major role initially, though she expressed her ideas confidently to the group. Her input increased from week to week. Chella added her own comments frequently to those she translated. And Lisa, Suzi’s summer replacement, sometimes expressed herself in a surprisingly incisive, yet wispy and meek, voice. Although people crisscrossed their comments and interrupted each other, everyone became quiet when Roby Soto talked. His soft energy and infrequent statements always commanded attention.

Robertito’s excellent eye contact during the week excited everyone. Nevertheless, Laura suggested the introduction of a table and chairs to further his visual participation. Referring to her work with Raun, she illustrated the dynamics of having the student on the chair and the teacher-therapist on the floor, enabling faces and eyes to be on the same level. The group agreed immediately to implement the suggestion.

Francisca and Carol noted Robertito’s deepened concentration on watching their lips as they talked. They would mouth the first letter of a word silently and Robertito would complete it. Inattentiveness, not lack of memory, compromised his ability to expand his vocabulary, Laura observed. “But that’s not typical. I can’t begin to tell you guys how far out it was for me to observe this week. Wow, does that little fat-cheeked boy want to be here with us and does he want to talk! He looks right into everyone’s eyes and watches. God, how he tries to talk!” She whistled as the best expression of her own amazement.

Chella, after sharing her experience about Robertito lying in her lap spontaneously, translated the Sotos’ joint observation of their son’s more consistent verbal indications to use the toilet.

Each time someone raised a question, Francisca repeated it. Roby eyed his wife curiously, finally announcing to the group that she might be exhibiting the first signs of echolalia. Everyone laughed. Francisca hugged her husband and snickered.

The introduction of the next subject came hesitantly. Lisa noticed that toward the end of the week, her little student made noiseless cryfaces and pulled her hair in response to his own hunger. “I think he’s experimenting,” she giggled. Everyone mentioned experiencing the same phenomenon, but no one corrected Robertito or demonstrated to him a more effective way to express his wants. Only Francisca had dared to explore an alternative by pulling his hair gently in return. At first, Robertito appeared surprised, but then he grabbed her hair again and tugged on it. Embarrassed by her own actions, she laughed at her son’s retaliation.

“I know he doesn’t want to hurt anyone,” Laura insisted, questioning whether laughter and/or no response was being supportive of his behavior.

Lisa raised her hand. “Um, sometimes I get a little lost as to what to do next.”

“It’s funny,” Laura responded eagerly. “But when I put my trust in Robertito and know he’s going to lead me, there’s none of that. I don’t become anxious or say to myself, holy sh*t, I have four hours – how am I going to keep going and know what to do? When I just go with him, I never get anxious or confused.”

“Exactamente,” Francisca concurred, her eyes aimed unflinchingly at Lisa.

Carol coughed before she spoke, trying to ignore her own hidden pressure to see Robertito advance. “Sometimes, I get this feeling like I’d love to be able to turn on the switch in him … like he’s standing at the gates, ready to go.”

“What am I lacking to turn on that switch?” Francisca blurted.

Both Laura and Carol were surprised by her comment and insisted that she, like all of them, did the best she could.

“It’s his choice,” Carol affirmed. “He does it, he flips the switch, not us.”

“Yes,” Laura said, “it’s his decision, not ours.”

Although the question received a direct and insightful response, no one, in the immediacy of that moment, dealt with the touch of anxiousness in Francisca’s voice or the implicit blame she appeared willing to direct at herself. In an effort to neutralize her own mild discomfort, she talked about her son’s hugging her. “He doesn’t want to work; he wants love!” She nodded her head as the others in the group smiled sympathetically. Francisca was “Mama,” a fact everyone always remembered.

The slight escalation of “isms” since our departure tapped everyone’s concern. “I was upset for a while about him being so ‘ismy’ this week,” Laura shared. “But then I said, ‘Hey, Rha-Rha, do you have expectations?” And I did… a little. I sorta figured he’d keep moving in the same direction … more participation and less ‘isms.’ Then I remembered what I knew. Robertito’s taking care of himself and that’s okay with me. Really! It’s okay.”

“Yeah, right on,” Carol cheered. Francisca and Roby listened carefully to Chella’s translation, but did not comment.

When the conversation shifted to diet, Francisca cut Lisa off three times in her over-anxiousness and trampled one of Roby’s thoughts with her own monologue. Francisca talked about the decision to use multiple selection of food, which allowed Robertito to verbalize his preferences. Roby, less enthusiastic, questioned the burgeoning accent on food. “He worked hours with me today without food.” What had been originally an intermittent support of some work sessions had become, in the last week, more fundamentally entwined with much of the interaction. Francisca said that although Robertito certainly worked and participated without food, his attentiveness heightened when food was in the room. But in spite of her own observations, she wanted to keep food out of the room so her son would not become dependent on it.

“Keep it out of the room as long as you feel comfortable doing that,” Laura suggested. “I agree, let’s try to change his focus off eating and back to us.”

At the end of the meeting, Laura itemized points to accent for the following week, which included talking slowly, encouraging spontaneous answers, increasing sensitivity to bathroom indications and practicing consonant sounds.

The second Wednesday night session after our departure was more sedate than the group’s first solo meeting. Although Laura did not hypothesize a rationale, she noted Robertito’s increased crying. She had not responded or supported him, recalling the suggestion Suzi and I offered before the summer. When she turned away, telling him it was okay to cry, he stopped. Each person then related his or her experiences with Robertito’s developing tantrums.

To further encourage toilet training, they had instituted a small food reward each time he urinated or defecated in the appropriate place. His indications for the bathroom increased markedly. Robertito no longer wet his pants as he urinated tiny amounts in the toilet, then asked for food abruptly. Either he pushed the last drops out of his bladder or held back in order to increase his frequency. In any case, his ability to understand and anticipate the actions of others had mushroomed.

Francisca focused on his listless pacing, concerned about his increasing desire to stand or sit in the corner, which she labeled as unproductive.

“While he’s in the comer, I work with him,” Carol volunteered.

“Good. Nothing is really unproductive,” Laura said awkwardly, uncomfortable about contradicting Francisca. “We just have to find a way to use it, like Carol did. Also, as you all might have noticed, Robertito is getting more sensuous. Those are real first-class kisses he gives now.” Everyone laughed.

Lisa mentioned his decreased hair-pulling since she no longer supported it with laughter and expressed her wants.

“His crying is still of great concern,” Roby said, returning to their original discussion. “He cried for one whole hour during a session with me.” Unlike Laura’s experience, Robertito kept crying when his father had expressed his love, turned his back and offered to wait until he finished. Chella confirmed Roby’s experience, which she had observed. She also mentioned that Robertito had asked for “Sushi” several times this week, a fact greeted with “ahs!” He had remembered. Even after two weeks, he retained and withdrew information from his recently awakened mind. Most significantly, our little friend had formed an emotional attachment to another person – an attachment strong enough to trigger his recall.

The behavior of observers became the next central issue at the meeting.

Chella, who had worked in tandem and alone for short periods, felt stifled not only by repeated interruptions but by Francisca’s insistence that she pattern her teaching in a certain prescribed cadence. In effect, Francisca’s push for uniformity, squashed Chella’s freedom to develop her own style and curtailed her initiative. Chella did not talk to Francisca, but, instead, shared her discomfort with Laura and Carol, who had, themselves, experienced the same pressure. Francisca had interrupted their sessions by correcting pronunciations and instructing about the use of some of the teaching tools.

“The observer shouldn’t talk,” Laura counseled. “I think that distracts and confuses Robertito as well as his teacher.” She decided to couch her suggestion in the abstract, discreetly avoiding any criticism or confrontation with Francisca. After all, she’s the mother, Laura repeated to herself. And so the concept of mother and the beliefs about the vulnerability of motherhood began slowly to short-circuit the easy, steady flow of communication between members of the group.

“Everyone works differently,” Laura continued. “Each of us has to trust the other. We want to share with Robertito, teach him to relate to all different people. We should, really, trust each other. We’re here to allow each person his or her own individuality and that’s something special we want for Robertito as well.”

“I’ve really learned this week,” Lisa interjected. “He, he likes to do different things with different people. It’s all okay. I feel like a little kid with him.” Lisa looked at Francisca, who had questioned the quality of her participation. “Maybe, because of my size, he sees me as just another kid to play with. We jump, roll and tumble … that’s me. After talking to Carol and Laura, I realized it was okay … to be me.” She stared down at the floor. “Everyone is different. I don’t have to do what someone else does. I just have to be me with a loving and accepting attitude.” Everyone agreed.

When Chella translated Lisa’s statement, Francisca concurred enthusiastically. “Yes. Everyone is different. And the most important part is the attitude.” Laura listened to her words, dumbfounded.

Carol initiated the next subject; Robertito’s decreased participation. “He knows if you want him to do something. You feel it in yourself. Bears always talked about being emphatic about our requests, expressing our wants without pushing. He can always say no or turn away. Maybe, well maybe, we’re backing off in some way, like getting into what this means and what that means instead of just being there.”

“It’s far out,” Laura added. “He’s a mirror. He hears what you really say. You know, like when you tell someone ‘oh no, I’m not angry’ when you are. Robertito knows; he hears the real part and he reflects where you’re really at. If you don’t mean it, he’ll know that, too.”

A long silence met her remark. Finally, Francisca changed the subject, asking the others not to work her son in the bathroom. “Let’s keep him aware of what the bathroom is for.”

“That bathroom’s no different than any other room,” Carol countered. “The problem is the food, feeding him as a reward for making. He’s getting mechanized.”

The group discussed the point for an extended period without consensus. Finally, Roby suggested limited use of food in the bathroom. Everyone concurred.

Itemizing each of Robertito’s accomplishments with pride, Francisca described how her son learned to draw a straight line, a circle, a cross and even erase this week. She had everyone write down the questions he now understood: what is this? where is it? and what do you want? Francisca confined herself to pragmatic and functional concerns. We have to move him along, she kept thinking, wanting to continue the pace of the first three months. She felt a certain pressure to substantiate her ability as a directing force. Slowly, she began to see Robertito’s actions as a reflection of her own worth.

Carol reiterated the concept of working for extended periods without food, except for meals. Francisca, skeptical, supported food as another facilitator.

“A lot of time, we do physical play and contact. I love it without food – no bribes,” Lisa said.

“Hey,” Laura countered, “it’s not a bribe. Nobody’s pressuring him or coercing him or doing anything to anyone’s detriment. Robertito’s free to accept our offers or not. That’s a trade, just like people who work for a salary. The money is not a bribe; it’s what they’re willing to work for; it’s their trade. I get something. You get something. That’s the principle. Hopefully, we both get what we want.”

“Exactamente,” Francisca said emphatically. She then highlighted her son’s increased ability with self-help skills – assisting in pulling his shirt down and his pants up. “Don’t you get the feeling he’s proud, so proud of himself afterwards?” She tossed her hair off her forehead and held her chin out.

Carol tapped her and said: “You have a very sexy son.”

Applause greeted her comment. Roby laughed as did Francisca.

The third Wednesday night meeting reflected more than merely the changes in Robertito’s behavior; it illuminated each person’s response to those changes. The frequency of “isms” escalated, occupying major segments of some days. Robertito no longer slept through the night. Crying became a sustained ritual, fracturing most of his sessions. Was he trying to manipulate them? Had he elevated hysterics to an “ism”? They toyed with the questions, but found no answers. Although they explored what they observed, they did not probe their own actions and responses.

For the first hour, they avoided facing the dilemma.

They discussed the introduction of more difficult puzzles and elementary lotto games, which he mastered easily when attentive. But his participation had ebbed.

With great pride, Francisca talked about how her son rose one morning and said “Pee-pee” spontaneously. But Roby, concerned with the frequency of Robertito’s bathroom visits, clocked eighty-eight times in the bathroom. Again, the use of a food reward was questioned, but never resolved.

“Before I took Robertito to the restroom,” his father said, “he indicated ‘pee-pee’ first. When I got up and went to the door, Robertito stopped and watched me. He looked at me and then at the food still on the floor, then back to me again as if to say: ‘Hey, why aren’t you bringing the food?”‘ Everyone laughed.

“Ah, he knows,” Carol whispered aloud.

“Listen, folks,” Laura said, “I use physical play as a trade.”

“Perhaps, because of his crying, we should get him out of the room,” Francisca said. “Maybe he doesn’t want to be there all the time. He wanted to go downstairs on Monday and got very upset and cried when he couldn’t.”

Laura cautioned about teaching him to manipulate by crying and screaming. “All we have to do is respond. Then, like we taught him to talk, we’ll teach him to cry. I observed some of us backing off when he cried and then doing what he wanted. We want to go with him, not only on terms he feels comfortable with, but on terms we feel comfortable with too.”

Carol believed the crying had to be supported as an explanation of its very existence. The others agreed, with the exception of Francisca, who listened without betraying her thoughts.

The morale of the group tumbled during the fourth week. Robertito slipped more into himself, crying and screaming much of the time. The resurgence of “eee-o” and “boy-o” vocal “isms” obliterated much of his talking. He wanted to go to the bathroom every two to three minutes, often yelling and banging his foot on the floor if no one responded. Their tactic of telling him “later” did not neutralize the problem. In effect, he wanted the food, often to the exclusion of other supports such as bugging, wrestling and tickling. Francisca thought his bathroom indication had become an “ism,” but Carol insisted her son used it to manipulate for food.

Laura, lacking her usual enthusiasm, shook her head. “At times, I couldn’t even reach him … for long periods of time.”

Carol, Chella and Lisa had the same experience. Roby nodded his head knowingly. “He’s getting hyper,” Francisca said, trying not to draw the inevitable parallels between the participants. Laura felt disconnected, annoyed with herself for not participating more in discussions, annoyed with Francisca’s excessive talking and annoyed with Robertito for his behavior. Are we losing him? Carol thought to herself. Is it all a mirage? The sardonic, skeptical words of her neurologist echoed in her ears. “Do you expect to cure the incurable?” She also noticed a slight increase in the frequency of her own seizures.

Lisa tried to make the meeting fun. It had always been fun before, but now, with growing difficulties and obvious disagreements, she felt pressed and pushed. Francisca intimidated her even more. Both she and Chella struggled to find their own centers. Though their attitude of acceptance became a major strategy for the work sessions with Robertito, their discomfort in being observed and in dealing with Robertito’s crying sabotaged the tactic. The mood even touched

Roby, whose optimism faded.

“Most of the days with him this week have been ‘bad’!” he said, his head downcast.

“Yes, it is true,” Francisca affirmed. “He spends most of the time within himself. This week,” she noted sadly from her chart, “Robertito indicated ‘pee-pee’ one hundred and twenty-three times.”

“But he urinates each time,” Chella said.

“Then he’s not faking,” Laura observed.

“Maybe he’s holding it in,” said Carol.

“Bears and Suzi talked about surprising him if we wanted to use food,” Laura said. “Every once in a while and then maybe not at all. Our affection, our clapping, our hugs… that all counts for something. I say no more food in the bathroom.”

Francisca spoke in an unusually deep and raspy voice. The muscles in her neck tensed. “Then he won’t be toilet trained.” Nobody responded. Carol viewed toilet training as secondary to communicating and interaction, but withheld her thought.

Francisca’s comment annoyed Laura. Who cares whether he sh*ts in the toilet, she mumbled to herself. We’re losing him. Can’t you see? Whoa, Rha-Rha, let’s get your act together. Laura tried to contain her growing resentment by remaining silent.

“If he urinates a lot, then feed him a lot,” Francisca bellowed.

“Maybe he has a bladder infection,” Roby suggested. No one answered.

“How about only rewarding his big ‘pees.'” Carol countered. Everyone agreed easily with the compromise, “Great, now what about the food?” she asked. “He’s getting so angry and frustrated. That’s all he asks for lately. When I offer something else or say ‘later,’ he walks away screaming and pounding his hands on the floor and walls. His anger scares me.”

For the first time, someone had verbalized what they all secretly dreaded but had not expressed. Our calm, peaceful little friend had begun to act in a manner typical of the anger and aggressiveness documented in some other autistic children. No one wanted to lose him to violence and unhappiness.

“Wait,” Roby cautioned . “I don’t think it’s all bad. Robertito knows what he wants. He just doesn’t know an effective way to express it.”

“I don’t know if that’s all of it. Yesterday morning, he cried for hours without asking for food,” Chella said.

“Maybe he has a stomach virus?” Francisca suggested.

“Or he’s cutting teeth,” Lisa observed.

The decision to have Robertito checked by a doctor was made. Nevertheless, even though colds and viruses affected the child, he never exhibited the kinds of responses they had witnessed in the last several weeks.

“He never smiles any more. Always straight-faced and angry,” Carol confirmed. “Anybody have any ideas about why?” Silence. She did not want to share her fears with them. Was Robertito rejecting her and the others? Would the anger explode in some unspeakable act? If she dared to verbalize her thoughts, would they suddenly become true?

“Even when he’s not crying, he wasn’t so good this week,” Laura volunteered. “I called him sixteen times one morning and he could care less.” Deflated and hardened by his contrariness, she added: “The only thing he was into this week was his penis.”

Francisca agreed. Because of the heat, they had him semi-dressed most of the time. Perhaps, she postulated, his nudity added to his “hyper” state.

“If he touches himself so much, maybe it means he has some sort of irritation,” Carol said.

“I don’t think that’s it,” Laura countered. “I think it gives him pleasure, pure and simple.”

Aware of the cloud which settled over the group, Roby talked about his son’s growing ability to imitate sounds and physical movement when he concentrated. Robertito also imitated head gestures and tone when he learned new words. He also used mas (more) and si (yes) more often, illustrating his increased ability to abstract and generalize concepts on a simple level.

“When he’s there,” Laura bellowed, “he’s amazing. Only now, well, he’s out in space most of the time.”

“My little space cadet,” Carol laughed.

Francisca looked at her sternly, then forced a half-smile. How could they joke? How could anyone joke at a time like this? She used all her power to hold herself together. She loved these people as deeply as she loved her own family in Mexico, yet she found herself confused and distant as she became more anxious.

The gathering on the fifth Wednesday night began like a wake. Greetings were subdued. The stress of the past week had taken its toll in joy and laughter. Roby and Francisca watched their son cross a dreaded line. Carol clutched at the sparse signs of hope amid the jungle of foreboding indicators. The softness eluded Laura once again. The more Robertito removed himself, the more difficulty she had caring. Even Lisa and Chella were overwhelmed by the seemingly inevitable turn of events. Only Rita, whose presence had been requested by the Sotos, seemed unscathed by her observations.

“As a result of less food in the bathroom, he’s wetting his pants again,” Carol began, refusing to tackle the larger issue.

“I don’t think he has to be wearing diapers any more,” Rita said. “If he wets training pants, he’ll feel it and probably not like it. I think it’s time to graduate him from diapers.”

Roby agreed. He, too, believed his son did not find wet diapers uncomfortable.

Francisca cut into her husband’s last sentence. They must go to the heart of the matter quickly. Robertito had begun to hit and pinch himself. Small welts and black-and-blue marks began to be visible all over his body. Although the chest-banging and chin-hitting recalled old “isms,” the intensity spilled the activity into an almost unspeakable category. Francisca and Roby remembered the institutionalized children tied to chairs, wearing football helmets and soft boxing gloves. Vivid portraits of Robertito being restrained haunted them. No. Not Robertito, Francisca pleaded silently. Please, God, not my child. She’d give anything, even her life in trade. A sharp pain whipped from the base of her head down her back, distracting her from her waking nightmare. Her son had begun to exhibit signs professionals might catalogue as self-destructive. She stuttered over the word. It dropped like lead from her mouth. She wanted to scream. What happened? Tell me why? Francisca had watched him soar for over three months, only to witness his dramatic decline during the summer. How cruel the universe, she thought. How cruel! But somewhere, not far beneath the surface of her thoughts, she knew nothing was inevitable, neither his rise nor his fall.

“I think it’s self-stimulation,” Lisa said innocently.

“Me, too,” Laura agreed, not out of conviction, but in an attempt to shelter Francisca and Roby.

“When I asked him to play the number game with me,” Francisca said, “he pinched himself immediately, then slammed his chin so hard I thought he’d break his jaw.” Chella translated her words meticulously. If it had been her sister, Martha, she couldn’t begin to imagine her own response. Despite Francisca’s pushing, she found herself admiring this lady’s courage and being more accepting of her imperfections.

Rita had observed for the past two days. She found it peculiar and noteworthy that Robertito’s actions did not necessarily originate with anger. At times, he participated on a minimal basis while pinching himself or crying.

“Yeah,” Laura substantiated. “The crying is weird sometimes. Almost like a call for help. But I don’t know what he’s saying.”

“Maybe he thinks that’s what he’s supposed to be doing,” Carol offered as she shrugged her shoulders. “But you know, when he’s into his ‘isms,’ he’s really into it now . It’s no longer a game. Like when he paces, you can’t reach him. It’s so hard to attract him.”

Laura laughed uncomfortably and joked. “He hates me.”

“Then why does he say Rha-Rha all the time?” Lisa countered.

“Is that the issue?” Rita asked.

“But he’s a different person,” Laura insisted

“Even so,” Rita replied, “are we seeing Robertito clearly?”

Laura turned away. ” I know it’s getting to me,” she admitted.

“Well, that’s a start,” Rita said, smiling.

“Me too,” Carol confessed, “It’s been the longest period he’s been like this. He cries two out of three hours with me and then pinches or hits himself Sometimes I get dizzy watching him. Where’d that soft, gentle human being go?”

“He’s still there,” Roby declared. The intensity of his voice startled everybody. He would never abandon his child, not even in his thoughts. “I remember reading in Son-Rise Bears’s comment on how the doctors labeled the children without ever looking at their own methods or attitude. Perhaps that is what we have to do.”

“Exactly” Rita agreed. “I observed Francisca, who’s a wonderful teacher, offering a choice between milk and cereal. Robertito cried immediately. And she gave him the cereal immediately. In Robertito’s eyes, it means, if he cries, he’ll get what he wants, possibly faster than if he asks for it. Without being aware of it, parents often teach their children to respond that way. Laura explained to me that you offer him different foods so he can show his preference. That’s one way to do it, but I wouldn’t use food. I’d use toys or something else.”

“Why not food?” Francisca asked.

“Food becomes an issue with children … a bargaining issue. If they stop eating, it’s not the same as if they stop playing. It’s loaded. Food is always a loaded issue,” Rita said. “I work with a child that uses food all the time to control his parents. Now that’s not an autistic child, but I think there are parallels. It’s a power play. So I’d keep away from the food issue.”

“But how do I get him to eat certain foods?” Francisca asked Rita.

“You want to be with him where he is. The whole idea of Option is not to make him do what you want, but to be where he is. And if he’s not wanting it, why force him?”

“Then if certain foods upset him, let’s get rid of those foods,” Carol said. Everyone agreed with the exception of Roby, who questioned the logic.

“Tell Francisca and Roby not to be bothered by the crying and hitting,” Laura said to Chella, motioning her to translate her thoughts. “Tell them he’s trying to express what he wants.”

Rita’s presence had sedated the escalating panic, but had not defused it. When Carol suggested increasing the cheering, the hugging, the clapping and the wrestling as supports for his behavior, Francisca voiced her fear that perhaps her son would be disappointed and, therefore, increase his radical behavior.

“Is it okay if he cries or ‘isms’ if he doesn’t get food?” Laura asked.

“Yes,” Francisca replied weakly. “If that’s what he wants to do.”

“Let’s stay in touch with having him relate to us,” Carol said. “What he does or accomplishes doesn’t matter.

“Well,” Lisa said, “I laid with him on the pillow and when Francisca walked in, she said ‘Ah, no work.'”

Rita addressed the group. “Maybe you want to ease up on the concept of work.” Francisca nodded after Chella interpreted her words.

“Bears and Suzi always talk about loving contact and stimulating Robertito’s own motivation,” Laura recalled. “We’ve been accenting achievement. Who cares? That’s not important. Right?” She looked to Rita for confirmation, which she received.

The suggestion was made to take Robertito outside for periodic breaks.

“Let’s not take him outside until Bears gets back,” Francisca snapped. Roby agreed.

“Why not?” Rita asked.

“What happens if he gets hyper?” Francisca questioned.

“Well, of course, then take him back to the room,” Rita replied.

“Bears and Suzi said he would just get into his own world outside. They said they didn’t want him outside,” Francisca said.

“But Bears also told us the most important thing,” Carol countered, “was to trust ourselves when they were gone.” An awkward silence blanketed the room.

“It’s up to you,” Rita said. “Perhaps breaks from the session would have a positive effect. And I also thought you might want to get him new toys. But above all, don’t push him.”

“Can he lie on his bed if he wants?” Lisa asked, directing her question to Rita.

“Of course. Yeah!” Laura interjected.

“Well, all I hear about is that he’s not working,” she retorted, avoiding Francisca’s eyes and non-verbally soliciting Rita’s support.

“I feel as if I dropped in from another planet,” Rita said cautiously. “I don’t want to rock the boat.”

“You’ve said a lot of things we haven’t been considering,” Carol countered.

“We need an outside inspiration,” Laura said.

“You’re a wonderful person,” Francisca affirmed, ever grateful for her presence. “Just having you here has made a difference.”

Though the pinching and the hitting had not been directly dealt with, everyone assumed that if Robertito was happier, as before, those behaviors would disappear.

After Rita left, the hard, fact-facing conversations continued until Laura broke the prevailing mood with a story. “Robertito was behind the shower curtain in the bath. I kept calling his name over and over again, but he didn’t respond. ‘Where’s Robertito Soto?’ I asked. He didn’t answer. Then I said, ‘Where’s the food?’ Bam! He whipped the curtain aside and looked at me expectantly.” The laughter which followed gave them their first emotional reprieve of the evening.

The meeting ended without definitive revelations. The confusions and fears remained, but the desperateness evaporated for at least a few days. The last week and a half before our return passed slowly. The pinching persisted, though with less intensity. Robertito still slammed his chest and chin. His fingernails, on one occasion, broke the skin on his face and drew blood. “Oh no,” Francisca murmured. She covered his chin with trembling hands. “Please, my love, don’t do this. His hitting became more insistent. Finally, she grabbed his hands. Robertito squirmed. His eyes opened wide. He pushed against the physical barrier, throwing his head wildly from side to side. A high-pitched whine bellowed from his larynx. Francisca released him. “I’m sorry, Robertito. I’m sorry” She knew she had violated his universe. But this was her son! How could she watch her son hurt himself? Robertito withdrew to a corner of the room and slammed his chin with the side of his hand while rocking and humming “Old MacDonald Had a Farm.” The anger in his face disappeared within seconds. Francisca stared at the blankness in her son’s eyes, trying to ignore his swinging arm. “Please come back,” she begged him. That very morning, for a fleeting half-hour, he had identified animals in the picture books and retrieved a series of toys on request. Robertito had left at least one door ajar.

Francisca packed a towel under his shirt and protected his chin with a pile of Band-Aids. He adjusted to the padding by banging other parts of his body. Seemingly angry hands signaled an angry protest. And yet, oftentimes, they moved more abstractly in a mechanical and habitual fashion as if programmed like his other “isms.” Francisca considered putting grease on his body to prevent the pinching, but, instead, she increased her massages and requested everyone else to do the same. Some of the apparently self-injurious behaviors declined.

The scheduled breaks in the sessions had a positive effect for the first two or three outings. In the park, Robertito watched other children, stared at airplanes passing overhead and touched the leaves and flowers in his path. He studied his shadow on the ground, ran up and down the parking lot, then lost interest. Those big expressive eyes dulled. He moved mechanically like a toy soldier. He seldom smiled.

The awesome calm had been replaced by a hollowness, an emptiness evident in his glazed eyes. While salvaging the child who participated on a very limited basis, they had lost the happy smiling and self-motivated little Buddha that had once greeted us joyfully each morning.

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