The crimson sun hovered just above the road in my rearview mirror as I headed home from the city. A dusty haze along the highway muted the sharp lines and distinct colors of nearby office and apartment buildings. The tires of my car hummed noisily, providing background music for my reflections. I thought about Raun, knowing he had broken through some of those invisible walls that enabled him to make more sense out of his environment than before and take some small but meaningful steps toward interacting with us. However, his continued self-stimulating behavior and his obvious inability to absorb and digest information – the enigma of some as yet undefined organic dysfunction – suggested disconnected or disassembled circuitry in his mind. The system that catalogs and retrieves information from the memory cells of the cerebral cortex seemed inoperative in him. And, if this was so, how could we correct what was already awry? It was simple: We couldn’t. But maybe Raun could.
I had researched studies done of people who had suffered strokes and read of the possibility of “permanent damage” In many cases, it could be shown that specific masses of brain cells and tissue had been irrevocably destroyed. Autopsies revealed large areas permanently impaired by scarring. And yet, despite such damage, some patients found new ways to talk and new ways to move, and made new connections that allowed them to regain control over areas once paralyzed. They did not regain the functions of the destroyed cells but rather activated portions of the brain not previously utilized, expanding the potential of existing neurons.
Why did some stroke victims make these seemingly miraculous jumps while others remained crippled and handicapped? Most professionals attribute such jumps to motivation, an ingredient essential to the success of most serious operations and treatments. We knew that if we could inspire Raun to seek involvement with us, he might then make new connections and open new channels. Memorizing data and submitting to simple training and behavioral conditioning could never accomplish what might evolve as a result of our activating his own desire to learn.
We needed more than his partnership; Raun had to play a leading role in his own recovery.
Our around-the-clock program flourished. Every minute of every day, we provided Raun with contact and bombarded him with stimulation. Our crew, including Bryn and Thea, engaged him more excitedly and more assertively. We all sensed a new dimension developing in our program. Since discovering himself in the mirror, Raun had become more purposeful in his activities and involvements, more premeditated in his actions and reactions. When he picked up a puzzle piece, he did so with more energy. When he attempted to insert it into its appropriate slot, he turned the piece more skillfully than before and demonstrated greater mastery as he matched the cutout forms to the wooden receptacles they belonged in. Had Raun opened a new neurological pathway when he took more ownership of his arms, hands, fingers, legs, belly, head, tongue, and lips in the mirror? His enhanced body awareness affected both his large and small motor skills. As I watched him and Samahria spin in circles and playfully bump into each other, I couldn’t help but speculate that Raun had, additionally, found beauty and delight in strengthening his contact with himself and with us.
The following depicts Raun’s typical day. When possible, we followed this schedule seven days a week.
Daily Schedule
8:30 Raun has been awake in his crib for about half an hour. By this time, he has usually thrown his toys onto the floor. Samahria takes him out of the crib and dresses him. He glides down the stairs on his belly, feet first. Then, he eats breakfast with his mother at the kitchen table or in the bathroom, all the time being stimulated by words, sweet commentaries, or songs played on the tape recorder.
9:15 The more formal sessions begin as Raun and Samahria go into bathroom, which is filled with toys and a vast array of educational materials. They play games aimed at developing interpersonal interaction and skills, and Samahria rewards and reinforces him with smiles, cheers, stroking, and food. The toys and games include an insertion box with at least thirty different shapes, four or five wooden insertion puzzle games with hand knobs (Samahria makes sounds as she picks up each animal piece and articulates identifying nouns), a truck with seven connecting pieces, a tool game toy, musical instruments to bang and blow, insertion and building cups, clay and Play-Doh, crayons and chalk, as well as mounted photographs of family members, animals, and other objects to be displayed for possible identification. They do exercises to music.
The more formal sessions begin as Raun and Samahria go into bathroom, which is filled with toys and a vast array of educational materials. They play games aimed at developing interpersonal interaction and skills, and Samahria rewards and reinforces him with smiles, cheers, stroking, and food. The toys and games include an insertion box with at least thirty different shapes, four or five wooden insertion puzzle games with hand knobs (Samahria makes sounds as she picks up each animal piece and articulates identifying nouns), a truck with seven connecting pieces, a tool game toy, musical instruments to bang and blow, insertion and building cups, clay and Play-Doh, crayons and chalk, as well as mounted photographs of family members, animals, and other objects to be displayed for possible identification. They do exercises to music. Samahria helps Raun move his arms, feet, and torso to the tempo of music and also at random. They improvise spontaneously much of the movement and dance. We’ve designed body parts identification games to help him develop gestures, such as pointing, and to stimulate him to speak. Touching interludes encompass stroking, massaging, and tickling as well as exploring hands, fingers, toes, noses, ears, and the like. Water games are played in both sink and bathtub. Books constitute a multidimensional resource, making it possible to turn pages, view pictures, read words, and explain the actions of vehicles, people, machines, and animals. “Smell” books (scratch the patch) and pop-up books add additional surprise to Raun’s adventure and allow us to combine pointing and speaking with touch and smell.
10:30 Break from confined work area: go for a walk, play peekaboo, try to interact with some other toys, give Raun some food. All involve constant interaction aimed at strengthening eye contact, responsiveness, and bonding. Later, we abandon the breaks, finding the time spent in the room more focused and more effective.
11:00 Back into the bathroom for more structured interplay and games.
12:00 Finish morning stimulation sessions. Take another walk or a car ride, going to the park or the store, or visiting with other children. (Oftentimes, Raun withdraws and becomes frenetic in his self-stimulation during such excursions, persuading us to review the wisdom of including these adventures in his program. Eventually, we eliminate them.)
1:00 Nap.
2:00 Awake and down for lunch.
2:30 Another session in the bathroom.
3:30 End of bathroom session. Playing in the park, a bike ride. Also time for Bryn and Thea to function as playmates/teachers/therapists.
4:00 Special helper (Maire or Nancy) arrives and begins session in the bathroom.
5:30 We integrate other members of the family or teaching group – jumping on the bed, playing “Simon Says” games, and providing more physical stimulation.
6:30 Dinner with entire family along with student teacher or teachers. Now we work as a team with Raun, using all aspects of the meal to encourage eye contact and imitation games, usually with our son as leader and all of us as his students.
7:00 Additional session in the family den.
8:00—8:30 Session ends.
8:30 Raun to sleep.
Another difficulty we faced with Raun was his inability to eat solid foods. At each meal, we would attempt to teach him how to chew and, hopefully, convert his baby-food diet into a more well-rounded meal with solid foods. One night, he grabbed a handful of French fried potatoes from a bowl and shoved them into his mouth. A comic image with swollen cheeks and the amused look of a clown. Before we had a chance to dislodge the excess food from his bulging mouth, he swallowed part of it without chewing. He looked up at me, surprised, and gasped. Within seconds, he was in trouble.
The food stuck in his windpipe, cutting off his ability to breathe. He began to struggle desperately, poking his fingers into his neck. His eyes opened wide, pushing outward from his head as if he were trying to grab air through his vision. We picked up his arms and slapped his back, then shook his entire body. What we did had no impact.
He still could not get any air. He started to shake his arms, then looked at me as if pleading for help and, yet, at the same time, observing events that had slipped beyond his control. I picked him out of his chair, opened his mouth, and searched his throat for the food with my fingers. No use. I turned him upside down and began shaking him. Raun struggled more now. His body jerked spasmodically. I slapped his back, then hit his buttocks. Impossible. An every-evening occurrence had quickly assumed the proportions of an unthinkable nightmare. All present had jumped out of their seats. I could see all the rush of movement in my peripheral vision as I searched desperately for something else to do. Shock the digestive track. Send a ripple through the system that would make him vomit. I handed Raun to Samahria, telling her to keep him upside-down. With one hand, I found the soft part in his upper abdomen just below the rib cage and with the palm of my other hand slammed upward into that section of his body. He emitted a harsh grunt as the potatoes and other contents in his stomach tumbled to the floor. We had improvised a maneuver that saved our child. Years later, a physician would design a similar procedure to help choking victims.
My hands began to shake as I looked at Samahria’s numb expression. She held her son close to her. Raun coughed, then recovered quickly. He looked at us with great relief His eyes glistened as he glanced at us with an expression that seemed to say, “Thanks.”
Short panting breaths dominated my body as my ribs strained under the constant and rapid pounding of my heart. Samahria and I gaped at each other through the tension in our eyes. Her face and lips had turned ghostly white, but she managed to squeeze out a smile of relief. I began to laugh. Raun was still here! He had survived. We had survived. God had given us another day – another day to try to reach our special child.
We decided in that moment to initiate immediately a crash effort to teach Raun how to consume solid foods. We would first establish eye contact, then have him watch us insert food into our mouths, chew it exaggeratedly, and then swallow it. We repeated this over and over and over again. Finally, Samahria placed soft but solid food into his mouth. For the first few moments, he just let it sit there on his tongue, then let it fall out of his mouth. We modeled a possible course of action for him by chewing the same food robustly in our own mouths. Unfortunately, he did not take our cues. Samahria talked to him as she manipulated his jaw with her hands, opening and closing his bottom set of teeth against his upper set as a way to teach him how to ready food for consumption. We repeated this exercise diligently at every meal. Samahria and I took turns working his jaw. Every so often, we could feel the muscles of his jaw work. It took forty-two meals over a period of two weeks before we noted real progress. Finally, our enigmatic son started to chew, Hurrah! Hurrah!
Each week, Saturdays and Sundays merged into one another as we eased into our peculiar and unique life-style. We spent many weekend afternoons building miniature indoor bonfires in the living room fireplace. Bryn, Thea, and I would gather up the stubby logs piled at the side of our house. Thea always warned me not to give her heavy ones. Bryn asked for more and more logs until, inevitably, the strain on her arms became apparent in the discomfort visible on her face. The three of us stacked the wood in and beside the brick fireplace.
By packing crumpled newspaper under the grill, we created a base for the flames. Samahria opened all the windows, sometimes even turned the air conditioning on, for our late-summer antics required immediate cooling. And then, as we all sat around, I lit the paper and ignited the many corners of our creation, always careful to have Raun break from his sessions at those moments in order to be with us and to watch, with obvious fascination, the dazzling dancing flames. Reds, purples, and white. As the fire began to roar, Bryn and Thea would cheer and clap. The stereo would belt out Bach as reinterpreted by the Modern Jazz Quartet.
Once sure of the success of our fire, we then would all clear the furniture from the center of the floor, leaving the room bare before the hearth. Bryn would bring in some beanbags while Thea grabbed pillows from the bedrooms. In two minutes, using the soft cushions for support, we were snuggling with one another in various positions on the floor, enjoying the fire and one another. Bryn’s head leaned on my legs as Thea’s feet draped over my stomach. Samahria lay diagonally across my chest. The Big Bear had become the big bear rug.
Within a half hour, Jerry, Laura, and Nancy joined us, all of them having become part of our evolving family. We disconnected the telephones for the remainder of the day and took turns working with Raun. He played and poked at the fire, then engaged us even more fully in the bathroom. Jerry tossed a ball to Bryn, who returned it through her giggles. Thea asked Laura to play pickup sticks. Samahria kissed me and whispered that she was very happy.
These were beautiful times, when talking and doing became secondary to our being with and flowing with the people we loved. A time when the good feelings of each of us touched everyone else in the room. A time that included an hour-long dialogue that I did with Laura, helping her investigate the beliefs underlying the discomforts she had about school. Samahria brought Raun back into the living room for a few minutes; together, they experimented with Jerry’s vibraphone, making different sounds. Bryn and Thea swayed to the rhythm of their music. Nancy stared into the flames. The voices and the music blended, creating a symphony of sounds. Mellow. A togetherness we all treasured. Poignantly aware of loving and enjoying one another.
As the program continued, Raun produced more varied facial expressions and communicated more with gestures. Playing in the mirror had become one of his favorite games. I was increasingly conscious of his ability to control his environment. He manipulated us now by taking our hands, pulling us toward objects he wanted, and then crying. The message was loud and clear. I want. I want.
What wonder! In the morning, he took Samahria’s hand and led her to the refrigerator to show her that he wanted juice. In the evening of that same day, he pulled me to the bottom of the staircase to show me that he wanted to go upstairs. The second floor area was Raun’s private world, where he often wanted to go to be alone. We always allowed him this solitude, although we would intercede after an extended period of time.
When we put a glass of water on the table, he would go after it once he saw it. We would help him hold the glass in his tiny hands. Previously, Raun had responded only to foods and liquids placed directly in front of him. Now he extended his frontier somewhat further. He would follow us and the glass with his gaze rather than sit Buddha-like with a fixed stare. Had he solidified new connections in the synapses of his brain? Had he altered the hard wiring of his neurons as his interest in the world grew?
We had also noted his increasing attentiveness to people; he was more involved, almost caring, in his manner when playing with us. Perhaps the reasons were obvious. People had become increasingly more useful to him, helping him get more of what he wanted. And we, the people, had used every experience of contact as an opportunity to express acceptance, love, and joy. Always, we had been the ones to initiate contact and cheer his accomplishments, whether he built a tower out of blocks or looked directly into our eyes. Now Raun began to make moves toward us. He would give us a plate or the top from a jar so we could spin them. Give and take in our interactions had increased dramatically by comparison with those first weeks in which he showed little response to our imitations of him.
Another hurdle had to be jumped. Initially, Raun had used crying as a means of articulating wants and asking for things. We permitted it and reinforced it because we believed that the fact he was communicating was far more important than the specific form of communication he chose. We did not want to extinguish what had just begun by confusing him with potentially incomprehensible directions. But now Raun was much more aware of himself – of his wants and his abilities. We could build on this strength. We believed Raun could accept and deal successfully with change if we altered our own behavior slowly and respectfully. Instead of jumping to fulfill his wants every time he cried, we decided to pause, ask him what he wanted, encourage him to point or make some gesture to help us understand, and then deliver on his request. Sometimes, he appeared impatient with this strategy. Other times, he stared at us genuinely perplexed. We followed this procedure over and over again throughout the day.
Each unfolding week ushered in new accomplishments – new breakthroughs. Yet I kept reviewing an area I knew to be critically important to Raun’s ability to think and ultimately talk.
Each evening, for weeks, I put him through the same test, hoping in this way to help him eventually to accomplish the near impossible. I would greet him in the kitchen and show him a cookie. When he put his hand up for it, I would slowly move it away while encouraging him to follow it with his eyes. Then I would make a great show of putting the cookie behind a piece of paper. He would lose track of it once it disappeared from sight and then stand there confused. He still could not keep an object in his memory when it was out of view. He still had a limited ability, at best, to solidify images in his mind for future reference. Developing and perfecting this area was critical; it would serve as a foundation upon which he could build language.
This would be our game – Raun’s and mine. The rehearsal for perhaps another time.
Log: Ninth Week – Same Schedule, Three Active Teachers
Changes:
- Eye contact has become excellent and sustained.
- More attentive to familiar people now, and attentive for short periods of time to new people.
- Absolutely no hand fixating or flapping this week. A real “wow!”
- More expression of wants by crying and pulling.
- Listens to requests: e.g., go here, take my hand, put it back, wait, come, go get it, eat, sit down.
- Now initiates game playing and social contact – he will give us objects for us to spin with him.
- More active interest in game-related activities, such as peekaboo, playing with insertion toys, working puzzles.
- More possessive of objects; for the first time, he will now actually fight for things and will cry if something he wants is removed.
- Starting to hold cups and glasses by himself and drinking by himself, but this is very inconsistent.
- Will follow people in and out of rooms, especially his workroom (he appears to love his workroom).
- Has started to chew solid foods without incident.
- Enjoys engaging himself in front of the mirror – goes up and down the glass with his hands, playing peekaboo with his image. Also looks at other people through the mirror.
- Now starting to solicit some physical contact, seems to enjoy it at times.
- Comes to his mother and to teachers when strangers are around.
- Starting to gesture – points and bangs some at the things he wants.
- Responds to more complex verbal suggestions: “Raun wants bottle,” “Wait a minute,” “Raun, stand still” (when he puts on clothes).
No Changes:
- Still prefers the inanimate world outside his work bathroom and den sessions.
- Still very absorbed by spinning objects.
- Still does not in any way indicate a wish to get out of the bed in the morning or after naps.
- Still does not use verbal language to communicate.
- Throws everything he gets his hands on.
Further Observations:
- Aware that the quality of his responses is much better in places like the bathroom, the den, or even the car, where there are few distractions.
- Imitating more of our sounds and physical acts (mouthing, cocking his head, jumping, crawling, running, hitting the tambourine as instructed, blowing, etc.).
- Stronger interaction when he initiates and controls.
- Knows the sound of the car and the doorbell; looks in the appropriate direction when he hears them.
- Curls his fingers to one side of his face if he is agitated.
- Has a peculiar behavioral pattern of turning away from people when he smiles.
- Gets notably upset when his sisters cry; tries to manipulate them to smile, by approaching them, even touching them at times.
Samahria brought Raun down from his room one Saturday morning before dressing him. As he sat on the kitchen floor while she brewed coffee, he grabbed his shoes and tried to put them on. He struggled, trying to fit his toes into the appropriate hole and caught his fingers in the laces. I sat down beside him to help. Little by little, we maneuvered the shoes on to his feet, while he directed the process. As soon as we finished, he ripped both of them off and began again. I aided him again. Once they were on his feet a second time, off they came. His tiny fingers worked busily; he was animated, excited by his accomplishment and newly attained skill. He must have put on his shoes over twenty times. Finally, he left them on, visibly exhausted.
In the afternoon, Samahria took time out to practice the saxophone, the latest endeavor undertaken only a few weeks before. Laura, an accomplished musician, had volunteered to be her teacher. Now the notes came careening out of the sensually curved bellows of the horn, invading our home with the brassy dissonance of sounds either too flat or too sharp – a beginner’s shrill chorus.
Every time Samahria practiced her horn, Raun would actually run from the clamor – out of the room. Sometimes, he cried and held his ears to protest this assault. His opinion seemed loud and clear, and he expressed it lucidly and effectively. In contrast, Bryn, Thea, loving friends, and I were more accepting of Samahria’s starts. We had seen many of them. Her on-again, off-again love affair with the piano. Then her lessons with the guitar, and her attempts to compose her own music and lyrics. All those free concerts with us as her captive audience. And now the sensuous saxophone. While Raun ran and hid, we rejoiced in the fact that she hadn’t fallen in love with the tuba or trumpet.
We began the eleventh week in the program. As I came through the side door after a day spent working in tinsel town, I bumped right into Raun, who had been standing by the table. He peered up at me very casually, brought his right hand up from his side as if to take the oath of office, and then moved his fingers up and down against his palm. My God, he was waving hello!
Dumbfounded, I waved back. He watched me for several seconds and then looked away. What a simple and profound hello – the best I had ever had! Three months before, if I had walked through the door and thrown a hand grenade, Raun would have never so much as flinched or looked at me. Now this little man greeted me with a sweet and understandable gesture. My number was coming in. We were both the winners.
There was still enough time for Raun and me to play our favorite non-game before Samahria put him to bed. I took a cookie off the counter and showed it to him. I put it in the center of the floor, calling his attention to it. Then, as he watched, I ever so slowly placed a newspaper over it, hiding it from his view. He paused, staring at the paper for almost a minute. Then, with very little overt expression of interest, he walked over to the paper and sat beside it. He studied the photographs on the front page. His glance moved slowly across the newspaper and lingered at the edges. Samahria and I looked at each other, waiting silently. We had seen him do this before, each night, without ever going further.
But then, with a careful movement of his hands, Raun pushed the paper aside, sliding it off to the right until he had uncovered the cookie. Without ceremony, he picked it up and ate it. A random accident? We could only guess. We held our breath, reviewing the event excitedly. Try again. Take the chance.
I took another cookie and showed it clearly to Raun. I put it on the floor in another part of the room and slowly placed another piece of newspaper over it. From the corner of my eyes, I noted his primal intensity like an animal poised to pounce. My neck tightened and a flutter of energy ran through the upper part of my torso. As soon as I stepped out of the way, he followed swiftly in my tracks, lifted the newspaper, and quickly plunged the cookie into his mouth. Amazing! He seemed filled with a new sense of authority, a new confidence. Had it really happened? Did this mean he could hold images now in his memory and use them?
I grabbed a handful of cookies. I put one under the base of a light chair in full view. He followed, quickly lifted the chair, and took the cookie. I put another on the counter out of sight. He again followed, lifted his hand, and felt around on the top of the counter, his little fingers walking across the Formica until finding their mark. He grabbed the cookie and rewarded himself. I placed a cookie on top of the chair. Another under the pillow of the couch. Another inside my clenched fist, which he soon assaulted and forced open. Determination. He found every cookie. We applauded and cheered him. We were drenched in our exuberance. And he was, too.
He enjoyed this game immensely, excited and eager to pursue and find the food. We played for over half an hour. Had I ever really believed that he would be able to do this? What a blessing to receive so much more than I had ever envisioned! Although I had always wanted Raun to find the cookie, I never felt disappointed when he didn’t. We had taught ourselves and those who helped us to play the game of “what is,” not the game of what could be or what might have been. No worry about the future. No regret about the past. Only loving Raun and working with him in each unfolding moment. That was the secret.
And now, suddenly, “what is” changed, and a diamond appeared in the sand.
The following day, Samahria phoned me at my office. Her voice seemed supercharged.
“Bears, something’s happening. It’s not in my head. I can see it. Yesterday, he could track the cookie even after you hid it. Well, you know how he could only deal with one puzzle piece at a time and only with explicit direction. This morning, I tried something different. When I gave him the puzzle, I scrambled all the pieces into one big pile. Bears, Bears, do you know what he did? He worked it all out by himself -without any help or guidance! He matched every piece to its place, one after the other. It was awesome to watch!” She squealed, then laughed. “Do I sound like a crazy person?”
“You sound wonderful, just wonderful. I’m thinking -”
Samahria interrupted my sentence. “He can retain more and more. He’s switched on like a thousand-watt light bulb! Oh God, I’m so excited for him – for me, for all of us”
All of our efforts had been dedicated to bonding with Raun in the hope of motivating him to pierce through the invisible wall of autism. His tiny steps had giant-sized implications now. The toys and games not only allowed us to join hands with him, but had become, finally, meaningful educational tools. If he could retain data and recall it, then his capacity to learn had increased tenfold. The depths of his mind had opened. In the midst of discussing possible ramifications, we both suddenly stopped speaking. In the silence, I could hear her breathe. In the silence, I could feel the intensity of our connection to each other and to the little boy we had just begun to know.
“You’re doing a super job, babes – really, a super job.” Samahria didn’t answer, and I could hear her sobbing softly on the other end of the line. “Hey, I love you.”
Another stretch of silence as she began to find her way back, gasping for composure. “Don’t mind me. I’m really very, very happy and very silly. I’m just celebrating.”
Although we both realized what this new milestone could mean, we encouraged each other not to form any expectations. Allow Raun to develop his own capabilities at his own rate, we agreed. We trusted that when he wanted to and could participate and learn more, he would.
The periods between those times when he appeared remote, aloof, and self-stimulating became noticeably more productive. He became increasingly willing to interact. In the park one day, he approached several children playing in the sandbox. When they offered him a shovel, he scooted away. But then, from a distance, he watched them closely. Perhaps, for the first time, those random, unpredictable events around him had begun to make sense. Several minutes later, Raun turned and looked directly at one little boy standing near the swings. He smiled at the child and then, with no apparent warning, walked right up to him and hugged him, placing his cheek gently against the little boy’s face. The youngster became frightened and started to cry. Our son backed off immediately, confused and concerned. He mimicked his little friend – scrunching up his face as if he too were sad. After several minutes, when the other child stopped sobbing, Raun moved cautiously toward him again and stroked his arm. His new friend eyed Raun curiously, then smiled. With this act of communion, this sharing of affection, a very delicate and oftentimes frail human being had made his mark.
This day, the sun began to rise in Raun’s eyes.
The frenetic pace of change and growth did not let up for Raun or for us. We introduced new toys and games and created more sophisticated social interaction during our sessions with him.
A new volunteer joined our program: Victoria, a very energetic young woman with enormous talent. She could express more beauty with her movements than an accomplished poet could create with words. She used sound and motion to express her feelings and thoughts, oftentimes spitting out wild ideas faster than a perpetual-motion dream machine.
She became an instant friend. Big Vic or Vikki, as we called her, had worked with handicapped and emotionally disturbed children as a music and dance therapist. She loved the accepting attitude that underlay our program and wanted passionately to work with Raun.
“Hey, take it from me, no one out there thinks about loving and honoring children. In all the schools and facilities I’ve ever worked in, all they want to do is change the kids – or leave them to rot. You talk about Raun like he’s – he’s a real person, worthy of respect and thoughtful consideration. Wow, he’s like an honored guest in your lives. I wish someone would treat me that way.” She paused and laughed. “Fat chance!”
Vikki’s aggressive stance did not mask her caring. This incredibly vivacious human being had a soft and gentle side. Her blond hair capped an impressive physical presence; her blue eyes danced wildly in their sockets. We spent over a full week training her and teaching her how to internalize the attitude underlying our program.
On her first day, in the bathroom, before Raun had really had the opportunity to know her, Vikki sat quietly in the corner and watched. Immediately after her entrance into the room, Raun registered visible discomfort. Nervous. Skittish. Perhaps, even scared. He paced back and forth between the tub and the wall, flipping his fingers in front of his eyes. So unlike the way he’d been in recent weeks – a fracture in his usual passivity. He began to cry and cry until his tears turned into hysteria. He sobbed and choked at the same time.
Vikki tried to approach him, to be with him and soothe him. In response, he banged on the door, hitting the door knob over and over again with the back of his hand. He wanted out. She opened it for him. Raun threw himself through the doorway. He scrambled through the house, searching frantically. Finally, he found what he wanted – Samahria. Running to her, he wedged himself between her legs and pressed his tear-streaked face against her thighs. His little hands clutched at her blue denim jeans. Finally, he wrapped his arms tightly around her legs. Samahria stroked his hair, and he accepted her affection.
In most families, such an event might occur many times each day, part of the unsung union between a child and parent. But for Samahria and for me, this was a very special and singular event. In the nineteen months of his life, Raun had never before solicited anyone for protection or for help in soothing his anxieties. It had never been a question for him. Indeed, it had never even seemed to matter whom he was with at any given time. He seemed to lack emotional bonds. But now a binding union had become solidified. For the first time, he had ventured outside of himself to form a strong, trusting attachment to Samahria.
For her, a mother who had waited almost two years for her child to seek her, to want her warmth and loving, it was a deeply moving, very personal experience. Her son was coming home.
Vikki continued trying to work with Raun for almost a week. The first few minutes of each session, Samahria joined them until she knew that Raun was comfortable. Yet, after only three or four days, it became apparent that Vic was having difficulty. Her way of bombarding him with stimuli seemed hectic and overwhelming to him. Her finely developed talents and tools did not prove useful. Raun remained unresponsive – not participating.
Even as we continued training her, guiding her to soften her methods and develop a more accepting attitude, Raun continued to withdraw in her presence. She insisted she could modify her approach. Yet as we shared together, Vikki realized her hidden self-doubt was undercutting her effectiveness. We explained that the dance on the outside had to match the attitude inside. If not, Raun would know; any special child would know. And, apparently, Raun did.
Vikki and I spent hours together doing dialogues to unearth her concerns, doubts, and self-judgments. She had some powerful personal insights and made changes, especially in dropping her need for Raun to respond in order to feel good about her teaching. However, Raun became more and more difficult in her sessions, withdrawing and crying. We had roundtable discussions about the wisdom of expanding the program at this time. Vikki decided finally to withdraw until Raun became stronger and could handle her special brand of magic. Admittedly, she had no experience working with children so young. But most important, she wanted to work on her attitude and establish a solid nonjudgmental, self-accepting place inside. Could we wait a couple of months and then give her another opportunity? Absolutely. Both Samahria and I concurred.
This experience confirmed the validity of two of our original premises. First, attitude greased the wheels and made our program with Raun work smoothly. If we judged him or ourselves, we would divert our attention from simply accepting and loving him and undercut the ease, tenderness, and effectiveness of the program. Second, as long as we demanded measurable signs of Raun’s learning as evidence of our own capabilities, we would create a pressure that subverted our basic intention. Such concerns would become a trap, leading us to push him and stimulating him to push back. We had made Raun his own teacher. Although we initiated activities, all of the games and interactions took place only with his permission. If he expressed a different interest, we followed and assisted, ever-present midwives to his unfolding. We had evolved a child-centered teaching process. In contrast, Vikki, as a result of all her training, had communicated implicitly an underlying pressure, a “must” or “should” that Raun resisted. The lesson had been for all of us.
Bryn, at dinner, expressed her growing excitement about her brother and their developing relationship. She loved the times when he responded. Chattering enthusiastically about his ease with puzzles and games, she said that she believed that he cared now. What a proud teacher – proud of herself and her pupil, as well as sensitive to his wants and relaxed whenever he withdrew into his repetitive “isms.” Bryn had learned as much as Raun in their loving interchange. This beautifully attentive and compassionate youngster demonstrated power, perseverance, and a new womanliness. Her insightfulness was rapidly deepening. She read more and explored more of her talents.
Her energy expressed itself in inventiveness and a tendency to grab the limelight. She had taken violin lessons, and now her practicing had given birth to nightly performances at mealtime. Although we did not protest, the strings of her instrument whined mercilessly as they sounded their sour notes. Bryn had become an enthusiastic pianist as well, though she tended to pound the keyboard of the piano. Her acting and dance lessons resulted also in nightly performances. Sometimes, she would stand on a chair in the kitchen and recite a monologue that she had recently memorized. Bryn’s facial expressions and theatrical arm gestures accented the emotions underlying her material. On other occasions, she would show us modern dance routines choreographed to music. Her vitality seemed irrepressible. Additionally, she treated us to expert comic imitations of family members and friends. Her quick character studies delighted all of us. Often, our applause encouraged her to do encores.
Thea talked less than Bryn about Raun’s growth and more about having fun with him. She had a lovely capacity to meet him on his level, to play with him as a peer, and to engage him in carefree physical interaction. Her relationship was less verbal, more intuitive. Sometimes, out of her own enthusiasm, or perhaps jealousy, Thea pushed him to respond. Either Samahria or I would then gently intercede and show her alternative ways to play with him. We would see her impish grin below her bangs and deep-set eyes. Although always open to understand more, she resisted direction, hedging her responses to our suggestions. She loved working with Raun and, by her own admission, wanted to be the best teacher possible. However, she moved to the sound of her own drum, using intuition as her guide.
Additionally, Thea still spent long hours by herself drawing and painting, producing fanciful renderings of her family, her friends, and her daydreams. Often, she drew beautiful, expressionistic pictures and presented them to us as gifts. Statements of her affection. Descriptions of her feelings. Her stylized figures, captured in movement, filled drawing pads with life and unexpected color. Blue hair. Red faces. Yellow noses. Green feet. Even the small clay people she sculpted stretched their arms and kicked their legs in unorthodox movements. All of her artistic creations reinvented the familiar, leaving the viewer to delight not simply in what is but in what could be.
Raun sat on the back seat of my bicycle during an early-morning ride. As we pedaled through the neighborhood, Bryn rode alongside on her five-speed racer. Raun sat quietly, staring at the trees and houses as they flew by. The motion captivated his attention completely. He slid into a peaceful and meditative state. We arrived at the park, the very same one where the word autism had sprung to life in my head.
The previous two and a half months seemed centuries away from that time. Yet, as I put my son on the swing and looked intently into his eyes, I realized that, although his progress had been dramatic, sometimes spectacular, Raun’s normal operating capacity remained far below that of other children his age. In language and sociability, this nineteen-month-old boy continued to function at an eight- or nine-month level. Only his large motor skills and some small motor activities were appropriate to his chronological age. His development of motor skills and reflexes had far outpaced his development in all other areas.
As I reviewed our journey with Raun, many delightful images flooded my mind. No matter how the world might label my son different, handicapped, or retarded, I wanted to stay in touch with his beauty, his singularity, his daring, and his accomplishments. When physicians, family, and friends deemed him terrible and tragic, Samahria and I created a different vision, seeing in him a child of beauty and wonder. I knew our son was neither terrible and tragic nor beautiful and wonderful. Those words reflected beliefs – what we chose to make up about the little boy we saw. I really liked the vision we had created; it brought us happiness and hope and freed us to try for more when others counseled us to turn away.
Initially caught in the grip of his own inertia, Raun had moved down the human river and allowed himself to float more into the mainstream. He had even learned to jump the rapids, and to use the currents to his own advantage. He had begun to make the world his, to be with others, to permit contact, and to express some of his wants. He had reconstructed his nervous system, opening the door to memory by learning to retain objects in his mind. For a severely autistic and functionally retarded little person, he had performed mind-boggling mental gymnastics, all of which would serve as foundations for future expansion and growth. At the very least, these newly developed skills gave him additional know-how, additional ways to deal with himself and his environment.
If he moved no further, I would feel rewarded by our work, knowing that in touching our son we had touched what was most beautiful in ourselves. This he had given us, by being there – by being Raun.
Midnight. The telephone rang incessantly. A voice pierced through years of silence; our friends from California would be coming through New York in less than two days and wanted to be with us – to lift the curtain of time and renew a long and oftentimes intense relationship. We welcomed it.
Two days later, a huge, sleek, twenty-eight-foot motor home rolled into our driveway. The sound of its horn bellowed like the baritone growl of an old Santa Fe diesel whipping across an opened railroad crossing. As Bryn and Thea came charging out the front door, with Samahria and me right behind them, my friend Jesse appeared in its doorway, mellow and tired as our arms interlocked. Our usual robust bear hug softened with the mood. Jesse’s wife, Suzi, jumped from the truck into Samahria’s arms. The distance and time that had separated us disappeared for these frozen moments. Then Samahria turned to the parked dinosaur, grabbing our friends’ children into her arms and hugging her first hello. Strange to be meeting them now for the very first time. Julie, sensitive and intense, with her piercing eyes – very outspoken at seven. Cheyenne, only four, but already a stage-stealing comic with red curly hair and baggy Chaplinesque pants. These cute little people met our cute little people, dancing their hellos and skipping their excitement into the house.
We stood with Jesse and Suzi under the clear sky, smiling at one another, touching through our eyes. I struggled to recapture the old closeness but still tasted the distance. Jesse seemed slightly removed behind a haze of hard work. Once the lead singer and writer for a rock group called the Youngbloods, he toured now on his own as Jesse Colin Young. He had come to New York to give three evening performances at the Nassau Coliseum on Long Island.
The four of us talked and reviewed our lives, exchanging the highlights and most dramatic experiences of recent years. Jesse and I reminisced about sitting on a bathroom floor in a dormitory at Ohio State in the middle of the night, writing songs, drinking watered-down beer and singing in harmony as the Midwest slept. He played his guitar while I wrote down lyrics on my writing pad. In the brotherhood of those years, we created a deep and abiding friendship.
Jesse recalled our motorcycle escapades in Pennsylvania while I still attended college. We spent weekends together, riding side by side along the Delaware River. Samahria hugged me from behind as we cruised along country roads on our beautiful and dignified BMW. Sometimes, Jesse and I would steer our bikes across meadows and then through endless rows of cornfields. The four of us would picnic on mountain slopes, consuming wine, cheese, bread, and the summer sun. Years later, we traded in our bikes for apartments in the city and drank espresso in Cafe Figaro, where Kerouac and Ginsberg had been only a decade before. When Jesse played at Folk City, Samahria and I sat in the audience and cheered his developing talent. Then, late at night we would all walk over to Chinatown or the East Village, making lower Manhattan our personal neighborhood.
After both Samahria and Suzi fell asleep, I shared with Jesse how I had reached for the stars with a series of short stories, two plays, and a file cabinet filled with poetry. A mountain of rejection slips decorated my desk as Samahria played breadwinner during the early years of our marriage. The completion of a first novel and the on-again, off-again production of one of my plays, which never made it to the stage, became my last hurrah. I abandoned writing, turning my energy toward the more commercial world of motion pictures and marketing. Graduate school and evening seminars as well as weekend workshops in philosophy, psychology, religion, and personal growth became part of my evolving life-style.
In recounting the specific events with our Raun, I felt filled with gratitude. Jesse laughed, saying the situation with our son scared him; however, he felt his mental circuits blown by our enthusiasm and our excitement about our family circumstance.
For the six days Jesse and Suzi stayed with us, we easily integrated them into our lives and our home. Each morning, Samahria worked her normal schedule with Raun as Suzi joined to experience our enigmatic son and help him. The other children played like fast friends. Our evening conversations ebbed and flowed as we sipped wine and discussed the impact of our beliefs and attitudes on our lives.
Jesse and I reached for each other, searching to pick up the thread. The years had taken a certain toll, yet we each felt richer in our lives than ever before. I spoke of my fantasy of creating a mountaintop retreat in New England where we could share with others and start a special community based on a common vision and common pursuit. We played out our dreams, enjoying sharing our fantasies with each other.
Opening night at the Nassau Coliseum, we saw endless lines of cars creeping into huge parking lots as we sped swiftly through a special back entrance accessible only to the performers. All eight of us packed into our jeep.
No seats had been made available for us. Instead, we were to take the children and sit on stage with the performers. A packed theater-in-the-round with fifteen thousand in attendance. A hush blanketed the huge crowd as Bill Graham jumped on the stage. Memories of Fillmore East. He made an announcement, then introduced Jesse. Wild applause came from every direction. The deafening roar subsided as the crowd’s attention focused on the entertainers, energizing them.
And then it began. The music ripped through the speakers, almost throwing us off the side of the stage. Not just a concert, an experience.
When Jesse sang “Get Together,” a song that had become an anthem for the turbulent late sixties, the audience jumped to their feet and cheered. When he sang ‘Starlight’ they lit candles throughout the stadium. We would come back the next evening and the next. Each time we brought Bryn and Thea to share the magic of this floodlight world – its beauty and its special brand of community. All of it unforgettable. I couldn’t help thinking that maybe one day Raun could join us for such outings. Maybe one day he, too, would understand and appreciate such a musical celebration.
The Youngs stayed one final day after their last performance before going south with their tour. When they left, we expressed our gratitude for their love and for the fanfare of their visit. We appreciated the momentary diversion from Raun’s silence and for the new experiences offered the girls. The opportunities to rekindle good feelings with old friends and to explore the changing tides of our lives had invigorated us.