Autism Treatment Center of America®
I_want_this_for_my_Son

A Miracle To Believe In

Chapter 1 Continued

TUESDAY - The Second Day

The Sotos arrived at nine o'clock. Jaime bowed when I opened the door. Before entering the house, Francisca and Roby, both red-eyed, began chattering simultaneously. The maestro put up his hand like an umpire, slightly embarrassed to hush his employers. Francisca indicated Roby would speak.

"A very strange and wonderful thing occurred in the hotel this morning," he said. "Normally, when Robertito rises, he sits on the bed, flaps his hands or clicks his teeth Always, he appears listless, confused, like he does not know what to do. He'll just stay in that position until someone comes for him. This morning was very different. Robertito sat up in bed as usual, but his expression appeared more thoughtful than at most other times. He didn't flap or make sounds. With great determination, he slid off the bed and walked directly into the bathroom. And waited there ... in the bathroom!"

I nodded. Awed. Dazzled by the information. In the midst of Roby's narrative, another significant event occurred. Little Robertito had left us standing in the doorway while he toe-walked through the living room, down the hallway and into our bathroom. A connection established and reaffirmed.

Suzi beamed like a proud mother, her blue eyes ablaze. She waved to us as she jogged through the house to greet the waiting student. "Buenos dias, Robertito," she said cheerfully as she closed the door to our tile classroom.

Addressing Roby and Francisca, I said, "We'd like both of you to observe today, one at a time. The only place possible is from the bathtub. With the glass doors closed, you won't be distracting. I put a stool in the tub so you can look over the top of the bath enclosure."

"I would like Francisca to go first," Roby insisted, tapping his wife on her shoulder to bestow on her what he considered an honor. We all agreed.

"One more thing," I added, looking at Jaime. "We decided if Robertito has some receptive language, some awareness of the words which have been used around him, it would be all in Spanish. So, in view of that possibility, Suzi and I decided to speak only in Spanish when we're with him. Can you give us a fast lesson, a list of familiar words or even short phrases?"

"Of course," the maestro replied. "I will sit with the Sotos and we will write the words for you in both English and Spanish."

"Write big," I said. "I want to tack that paper up in the bathroom for both Suzi and me." Talking through Jaime had become much easier. He had learned to mirror the tone and inflections of our voices.

"Also," I continued, "Suzi knows some Spanish. She already was speaking to Robertito in Spanish yesterday. She's a natural with language. Me? Well, I'd want to review the pronunciation with you. I'm an enthusiastic student, but with a tin ear."

When they finished their list, we carefully reviewed the words and phrases together: agua (water), la musica (music), habla (talk), mira (look), jugo (juice), leche (milk), los ojos (eyes), las manos (hands), la boca (mouth), diga-me (tell me), un besito (a little kiss), aqui (here), pongala aqui (put it here), yo te amo (I love you).

With Francisca positioned behind the glass doors, we began our day in the bathroom with Robertito. Suzi had already turned on the music and sat with him on the floor. They rocked together, from side to side. A peculiar smile dawned on Robertito's round face. If I wanted to jump beyond what I could definitely know, I might speculate that this little person appeared to be enjoying himself. One activity gave birth to the next. Whatever he did, we did.

At lunch time, Roby replaced Francisca. Having been closeted in the bathtub for hours, her hair, her face and her shirt dripped with perspiration. Nevertheless, she left the room smiling.

Sasha slipped in food for Robertito. we fed him organic peanut butter and jelly on stone ground wheat bread. Normally, he would feed himself with his hands sloppily, depositing food concurrently in his lap and on the floor. Since we wanted to develop eye contact, we fed him ourselves, morsel by morsel. At first, we had to hold a piece of bread beside his flapping hand to draw his attention to us. Then we placed the food between our eyes, inches in front of our faces, and smiled. We also used soft, verbal cues to try to maintain his attention. Robertito grabbed the food awkwardly, moving his hands lethargically as if they were only vaguely attached to his body. "Mira," Suzi said each time she held up another piece of food.

"Oh, Robertito, Robertito," she suddenly exclaimed, "Yo te amo, Robertito." Suzi whipped her head around, barely able to control her excitement. "Bears! Bears! He looked directly at me for a fraction of a second. He really did. I'm positive. Right at me!"

For the next several hours, we sensed Robertito observing us observe him. On one occasion when we flapped together, he stopped abruptly, leaving Suzi and me still shaking our arms. From his peripheral vision, he watched us curiously. We stopped flapping. Then, he shook his hands again. We followed. An incredible smile dawned on his face. He had it. I couldn't believe it, but he had it! And only in a day and a half. How could it be moving so fast? I thought to myself. Ah, I chuckled, fast and slow; they're only judgments and expectations.

We offered him puzzles and other simple toys, which he discarded immediately. Suzi and I stroked his legs on and off during the entire day. Robertito moved away each time. Finally, toward evening, he allowed physical contact. I moved from stroking his legs to stroking his arms. Very, very slowly and gently, I eased my hands across his belly and around his back. The little man stopped flapping while being touched. Suddenly, he jumped to his feet and walked in circles again. We followed.

Dinner was also served on the bathroom floor. I put each morsel of food between my eyes and smiled, repeating our luncheon ritual. He seemed more directed this time. On four occasions, he stared boldly at me, though only for a few seconds at a time. Real and spontaneous eye contact! These movements originated within him. They were beautiful and profound steps.

A child coming from himself, motivated from within, is significantly more powerful and effective in growing and in getting what he wants. If Robertito could ever climb the mountain, we knew he would have to do it himself ... not as a function of anyone's commands, but as an expression of his own wanting.

After the Sotos returned from their dinner, Sasha and the children took Robertito into the den again. In the distance, we could hear Raun's enthusiastic voice: "I just love his cheeks. Thea, look! They're so cute, those fat cheeks." Jaime translated his words.

Clearing his throat and swallowing noisily, Roby faced me and asked: "Will you teach him how to eat with utensils?"

"Oh," I smiled, "in a way, Roby, we aren't trying to teach him anything specific at the moment. What we do is not important right now. We want to create connections, build bridges. Eye contact is so essential. Children learn by copying, imitating. If Robertito does not look at us or hear us, then, of course, he will not learn how we move in the environment and how he can move in the environment." I paused, wanting them to digest everything ... and to question everything if they wanted.

"Since it's so, so much more difficult for him to do that than the average child," I continued, "we have, to take special care, create a special environment. For example, he's hypersensitive to sound. When he's bombarded, he closes his hearing down to protect himself. For you and me, a cough sounds like a cough. Perhaps, for Robertito, it sounds like an earthquake. So, we try to bring music and our words to him in a gentle, soft manner."

"Yes, yes," Francisca said. "I've noticed his tendency to flap his hands more or pull away when there are many people in a room with him. People make much noise."

"Also," Suzi interjected, "people are visually very bombarding."

"Things begin to fit," Roby said with great excitement. "Now that you have said that, I remember watching him took directly at a small red truck we once gave him. Also at a doorknob. Also at the chrome leg of our dining room table. But, usually, he would never look directly at a person. In fact, he is much more relaxed alone. He seems confused when a lot of people move around him; it's his most difficult time. I never realized that before."

"And what could you know from that?" I asked.

Roby nodded. "That if we want to make contact or teach him something, it's best to do it without a lot of people around - one to one like we are doing here. Now I really understand about the bathroom."

"Beautiful," I commented. "Your observations, ultimately, are more important than ours. Roby, Francisca - it's you who will be putting this together. In a couple of days, you'll be on your own. You'll be watching for cues and deciding how to respond. You said you wanted to work with Robertito all day, every day. Okay. Your attitude is still the key because if you're loving and accepting, you'll also be a better observer. When we have expectations or need things to happen, we're distracted by our goals, by our fears. Being here moment to moment is essential."

"Look at all the professionals who told you Robertito was unresponsive," Suzi said. "Yet we've noticed many small statements ... with his eyes, with his varied responses to being touched, with the imitation games. It's incredible, but some people discard such tiny bits of information as insignificant. But we know, if you're sensitive to all those cues, big and small, you create opportunities to make contact in a meaningful way."

"He's very into eating," I added. "You can use it - use everything! Anything! I'm not talking about bribing or conditioning. Each morsel of food can set the stage for possible eye contact. Our smiles, our warmth is just a way to say hello. He doesn't have to perform to eat. Yet when he takes the food, he might look past it and find our faces. And in that moment, we can be there saying something with our eyes, our expressions, our voices."

"Suppose he doesn't look?" Francisca asked.

"Then we wait," I suggested. "It makes all the difference in the world if we let it come from him. There's quite a distance to travel before we would try to teach him specific things like eating with forks and spoons."

"Yes, I see," Roby said. "You are talking about being there with him and for him."

"Even more than that. We're talking about going with him," I emphasized. "First: acceptance, contact, joining his world. Second: with our attitude and the responsive environment, we want to draw him out ... have him be motivated to try. Then, and only then, would he be ready to really learn many different things. And there's a bonus. If he's motivated, in touch, finally watching us, then he'll learn much by himself"

"In a way," Suzi said, touching Francisca's hand, "it's trusting the child. And trusting yourself to trust the child."

"But he has very definite... ah, how, ah, can I say it properly?" Roby stuttered.

"It doesn't matter how you say it," I assured him.

"Well, he has a specific handicaps. The on-and-off hearing."

I don't know if that's a handicap," I said, "as much as it's a way to take care of himself. He can certainly hear and see."

"What about memory?" Roby asked. "He can't remember from one moment to the next. Every day he looks at his hand like he's seeing it for the first time."

"I've noticed that, too," I said. "Especially with food, which we know he likes. He follows the food ferociously until it goes out of sight - behind my hand, in my pocket. Once it's out of sight, he doesn't pursue; it's as if he can't remember it or retain it without having it in front of him. It's a kind of memory dysfunction."

"There's nothing we can do for that," Roby concluded.

"Let's look at it in terms of motivation. Research illustrates that doctors will often predict that two people with identical brain damage resulting from strokes will never be able to talk or walk because the centers in the brain which control those functions have been destroyed. Yet, a year later, one stroke victim is speaking and moving about easily; the other is still mute and bedridden. When you ask for an explanation, the doctors say: 'Well, it's will-to-live.' In effect, the person who learned to speak and move again had to find new pathways in his brain, create new connections amid the debris. Since it required an incredible thrust, the person had to be highly motivated. And there's the key. Call it 'will-to-live' or motivation, but that's the power and energy we give ourselves to do what others might label as impossible. And that's what I'd love to see Robertito do. But you can't give him the spark. You can only be there, like a mid-wife, helping him find it within himself "

"Do you think he will find it?" Francisca asked.

"We can't really know that" I said. "We can only stay in touch with what we want for Robertito, for ourselves, and then do what we can to get what we want. Part of acceptance is allowing him to come our way or not come our way. Which leads me to a question. Francisca, how would you feel if Robertito never changed, never learned more than he knows at this moment?"

Jaime peered at me, his head cocked slightly to the side.

"Maestro?" I called.

"Ah, Senor Kaufman. I wondered why you were going back to that question."

"I'm not, Jaime, I'm going forward to that question," I said. Jaime became very pensive, then translated my words.

The Sotos looked at each other. Roby sighed. Francisca turned to me and said. "Still, it is a difficult question."

"Why?" I asked.

Her face became flushed. Her eyes reddened instantly. Tears flowed down her cheeks.

"What are you unhappy about?"

"Being a mother was something I wanted more than anything, more than anything else in the world. To love a child and have him love me. It's not ..." Francisca stopped herself. She glanced at Roby, touched her fingertips to his face and said: "I know it's the same for him, too. We try to love Robertito and he rejects us."

"Do you believe that?"

"Isn't it obvious?" she said.

"How do you see it as obvious?" I asked.

"If I go to hug him or kiss him, he moves away."

"That's a good question," Roby interjected, leaning forward on the edge of his chair. "I think I always believed that's what his moving away meant. But if he's oversensitive, he could be protecting himself ... like with the hearing. So when I call him, the switch isn't even turned on. Then, of course, he would not respond. And maybe, in some way, he's frightened." He rubbed his forehead nervously. "I guess I was so busy being hurt about being rejected, I never questioned why."

"And now?" I asked.

"And now," Roby said, "there are other possibilities. I can see it differently."

"Let me ask the question again. Do you believe moving away means rejecting?"

"I don't think I do any more," he answered.

"'Don't think' sounds like you're not sure."

Roby smirked self-consciously. "I guess I'm still deciding."

"About what?"

"About what this all means. If Robertito is doing what he can to take care of himself that would be okay with me. I would want him to be able to do that for himself." A huge grin radiated on his face.

"What are you smiling about?" Suzi asked.

"Oh, I guess, at how you assume things without ever questioning them. Somehow, I thought Robertito's action meant something about me ... like if I were a better father, he'd let me touch him."

"Do you still believe that?"

"No," Roby affirmed.

"And you, Francisca?" Suzi asked.

"I can see how Robertito is trying to take care of himself ... in the only way he knows how. I can accept that. It doesn't have to mean we're not good parents. But, Suzi, you know. I want to hug my son. I want to hold him close. I want him to hold me close."

"I know how much you want those things. I was once there, too," Suzi said gently. "But being unhappy about not having them is different than wanting them. What is it about not having that exchange of affection that's so painful?"

"I feel so empty."

"What do you mean?" Suzi asked.

"Like something is missing. There's supposed to be more."

"In what way?" I asked.

"Between a child and its mother," Francisca said, "there is a whole relationship which does not exist between Robertito and me. There should be so much more."

"Why do you believe that?"

"That's why I had a child."

"I understand what you wanted in having a child. But why do you believe there's supposed to be any more than there is right now with Robertito?"

"Because I want it!" she insisted.

"Why does wanting it mean it's supposed to happen?"

"I don't know. I don't know," Francisca said, shaking her head from side to side. "When I think about it, it sounds foolish. What is, is ... but I still want so much more."

"That's what you want. But how do you feel about 'what is' right now?" I asked.

"Okay," she said with a touch of hesitation. "I feel clearer. You can really drive yourself crazy trying to make your life fit your dreams. I see that now."

"That's what we mean when we talk about expectations, shoulds and supposed to's," I added. "We get into needing things to be a certain way in order for us to be happy. If they're not, we're miserable. And so, while we look anxiously for what we don't have, we frequently miss what we do have."

"I'm proof of that," Francisca grinned, pointing to herself. "I have barely allowed myself to be excited about what's happened in these past two days because I'm still so concerned about Robertito's being toilet trained, feeding himself, talking. All the normal things a child is supposed to do."

Francisca stood up and turned away from us.

"What's the matter?" Roby said, jumping to his feet.

"I'm all right," she said, "I just realized something. In a way, I've never really loved Robertito for what he is; I've always loved him for what I hoped he would become, what I thought every little boy should become."

"That's not rue," Roby insisted. "You've loved him and given him so much."

"Yes, I know, Roby, in a way that's true. I have given him everything I could. Tried to touch him, sing to him, talk to him, teach him and ... and even discipline him. But maybe now, I can give him even more by accepting him, loving him as he is."

Chapter 1 Continued