Chapter 1: The Arrival
The Vision Keepers: Walking for Native Americans and the Earth
We don't see things as they are. We see them as we are. -the Talmud
Benjamin was so wanted, so desired. Because my life had been filled with girls, from the moment I thought about having a child, I always imagined having a son. My second pregnancy was uneventful. I was busy with my two-year-old daughter, Karis, our recently completed dream home, and my job. When I was newly pregnant, I asked Karis if the baby we were expecting would be a boy or a girl. She replied without hesitation, "a boy," and never changed her preference to have a brother.
Karis's name literally means "gift of grace." She has been one of the greatest gifts that my husband and I could have asked for and the greatest help to us on our journey with Benjamin. She adores him. I believe even then that she foresaw the tiny baby changing everything that we knew for certain to be real, the boy who would lead us from Texas to California, then to Australia, from conventional medicine to natural medicine, from ordinary values to values of the heart. She has always been a very wise child.
I started attending meditation classes the month that Benjamin was conceived and began communicating with him in my daily meditation. It began as a one-way conversation as I would tell him how much he was wanted and how everything would be all right. Before long, I seemed to be able to sense a communication coming back to me. It was as if he were reassuring me that everything would be all right. I was not even plagued with gestational diabetes as I had been during my first pregnancy. In the third month of my pregnancy, I asked in my meditation what Benjamin?s life purpose would be. I received a straightforward answer: to be loved, to feel secure, and to learn compassion.
Due to my age, my obstetrician mentioned that I could undergo an amniocentesis to determine if there were any detectable problems with the baby. Not being the type of person who likes surprises, I was leaning toward doing the test so that I could either be sure that everything was fine or be prepared in case it was not. My husband wasn?t in favor of doing the procedure, since there were risks to the baby. I was going back and forth in my mind about whether to do the procedure, not making much progress in making a decision.
One morning, as I was taking my shower, I suddenly felt the following words come into my awareness: "Why do you need a test for that which you already know?" I was shocked by the intensity of the words as they were perceived in my mind. I knew that the words weren't just mind chatter, since the words felt as if they were forced into my brain, rather than being produced by it, and the words were structured in a way that I would never speak. I would never have used those words to convey that information. After this incident, I was totally at peace with the decision to forego the procedure. I recognized the familiar "knowing" from my childhood but wondered why it had returned so abruptly, nearly 20 years after that fateful night when I watched a friend die.
When Benjamin was born, it was a relief, but it was not the emotional high that I had felt with my first child. I felt somewhat guilty about his birth seeming so uneventful, until they brought him to me early the next morning. As I looked at him, I suddenly felt an incredible and overwhelming sense of love and connection to him. As I held him up, looking directly into his pale blue eyes, the words "I have waited so long to see you" came from my lips, and I began to cry. Somehow, even then, I knew that I wasn't referring to the nine months that I had carried him. As our soul connection locked into place, the winds of change began to blow, slowly breathing life into unknown possibilities.
Benjamin was a beautiful blond-headed boy with piercing almond-shaped blue eyes, who reflected his father's Norwegian heritage. He was wide-eyed, good natured, and happy. As my husband is the only boy, he is the sole heir to the Lindelien name. He was the only grandson on my side of the family. He was our first son, and our last child. We all celebrated his birth.
When he was just a few weeks old, his grandmother told me that he had eyes that "looked all the way into your soul." Consistently taller and bigger than his peers, he was strikingly beautiful. My best friend commented that he was "the most beautiful baby she had ever laid eyes on." Even as a small child, he had his father's athletic build.
In the beginning, he seemed fairly normal, except for a severe allergy to milk, a small eczema patch on his face, and a rather extreme sensitivity to medications. I didn't think his sensitivity to medications was unusual, since my mother and I are both very sensitive to prescription drugs. Benjamin laughed, smiled, clapped his hands, and displayed behavior that seemed no different from my daughter's during her first few months of life.
When Benjamin was eight months old, he crawled into the base of our brick fireplace, gashing his left eyebrow. Blood poured down his face, but he didn't cry. Seeing the depth of the wound, I scooped him up, shouting to my daughter that we had to go to the doctor.
As we drove to the doctor's office, my daughter, sensing my distress, said, "Don't worry, Momma. Mrs. Rather is with us. Ben's going to be okay." She indicated that Mrs. Rather was sitting in the passenger seat of our van, watching over us.
I thanked Karis for her assurances and thanked Mrs. Rather for her timely appearance. Since Karis had been able to speak, Mrs. Rather had been her constant companion. When asked why she called her Mrs. Rather, she replied, "She told me that was her name." Karis pronounced her name "Rat-ter" with the emphasis on the last syllable.
We thought this was curious, since we didn?t know anyone by this name. We referred to this woman as her imaginary friend until the day I saw Karis comparing the size of her foot to Mrs. Rather's. When I asked Karis what she looked like, she described an older woman in period clothing. I didn't fully understand what she was seeing at the time, but given my own experience with the unexplained, I didn't feel that I should discourage it.
After our arrival at the doctor's office, the pediatrician determined that stitches weren't necessary, but he would need to apply dermabond, a solution similar to household superglue, to hold the wound together so that it could heal. As the pediatrician called in his nurse to help hold Benjamin, he explained that we would have to hold Benjamin very tightly, as it was essential that he remain still, since the substance was to be applied very close to his eye. As his pediatrician leaned over to apply the substance, Benjamin followed his movements with his eyes. As the doctor applied the solution, he studied the doctor's face, without flinching or moving a muscle. The doctor commented, "I feel as though I'm treating a prizefighter." Even at this young age, he seemed to have an unusually high pain tolerance, or he understood exactly what was happening.
Benjamin spoke his first few words before he was a year old. He became very excited in certain situations, but his hand flapping and cooing were endearing. In some ways it was charming to see a child who could get so excited over the small things in life, such as the swirling of water going down the drain or the excitement of feeling the wind in his face. Sometimes, he would laugh and coo, interacting with someone, which wasn't unusual for a child, except that his attention wasn't focused on me, but on something just over my shoulder. Often, when he was alone in his bedroom, we heard him laughing and giggling, just like he did when we were playing with him. He walked at 13 months old.
At Benjamin's one-year checkup, I dutifully filled out the doctor's forms. He's right on target, I thought to myself. The appointment went quickly. The nurse came in to conclude the visit by giving his scheduled immunizations, the measles, mumps, and rubella (MMR) vaccine and the Varicella (chicken pox) vaccine. Benjamin was also given a blood test, to check the severity of his milk allergy. My heart went out to him being stuck twice with a needle and having so much blood drawn.
As we were leaving, I stopped at the front desk to handle the paperwork. The nurse practitioner happened by. I was on the board of directors of a child advocacy center, and she was the wonderful soul who performed all of the examinations on the sexually abused children who were referred to the center. As we chatted, Benjamin started fussing. We ignored his fussing, talking a little louder and faster. His discomfort escalating, Benjamin suddenly screamed out, "LET'S GO!" Our conversation stopped in mid-sentence.
"How old is that baby?" the receptionist behind the counter asked.
"He'll be one next week," I replied.
"Wow, smart one," she countered.
As I loaded Benjamin into our van, I noticed that his body was shaking slightly. The shaking was periodic, rather than constant, and appeared similar to a person's bodily sensation when exposed to something very distasteful, almost like a shudder. At the time I thought it was because he had gotten so upset in his doctor's office. Benjamin continued experiencing body "shudders" for the next several weeks.
Upon arriving home, I proudly recorded "said two words correctly" in his baby book. It would be more than two years before I could make that claim again.
At 18 months old, I looked into our backyard to see him walking down the slide on his play set. With his arms extended like a tightrope walker's, he carefully and easily made his way down the four-foot-tall slide to safety. He did this often, and never fell even once.
On one occasion, Benjamin was running in the park. A bee flew by and landed on his hand. As I ran over to swat at the bee, it flew away. I raised Ben's hand and could see the bee's stinger protruding slightly above his knuckle. I flicked the stinger out of his skin, taking care not to squeeze it but could see that his skin was already beginning to react to the sting. He vocalized a few sounds, waved his hand around a few times, then went back to playing. Wow, what a pain tolerance, I thought. I had no idea at that time that a high pain tolerance could be indicative of autism.
At his second birthday party, we invited a small group of children and several close relatives. When it was time to open his gifts, his sister and I performed the task, since he refused even to stay in the same room. He completely ignored us, running around the house, then jumping up and down on his trampoline positioned in front of the television. The birthday cake and candles remained unnoticed. He sat dully in his high chair, digging his fingers into the piece of cake I placed in front of him, staring off into nowhere. As far as Benjamin was concerned, the other people and children didn't even exist. He's just an unusually active little boy who isn't interested in anything that isn't physical, we told ourselves. The dark circles creeping in around his eyes should have told us otherwise.
We first began to realize that he was becoming very difficult to care for when he was almost two years old. I quit my job, telling my friends and family that Benjamin just seemed to need me more than my daughter had. He seemed to tantrum frequently and my mother was having a hard time dealing with him when I was working. He seemed to focus on certain things and it was almost impossible for him to switch from one activity to another. By the time he was two and a half years old, his day consisted of the following activities:
- Running for hours in wide circles while looking sideways
- Jumping up and down on a small trampoline while watching one of a handful of videos
- Eating a diet of beans, fruits, vegetables, bread, and french fries
- Sleeping (intermittently)
Like a small plastic windup toy, when he ran, Benjamin would go and go and go, as if he had been wound too tightly. He tried to expend all his excess energy at once. The problem was that something just kept winding him up. Once, he ran nonstop in wide circles in our backyard for over three hours. He never looked forward when he ran. He stared sideways, off into the distance. Aware of the images scooting by, he was unable to focus on them. If he were not allowed to do his chosen activity, he would throw himself on the floor, crying, kicking, and screaming. I had the bruises up and down my legs to prove it.
Even while watching his favorite videos, he was unable to be still. He jumped on his small trampoline, never looking down, never falling, his gaze locked on the television, sweat dripping from his face on hot Texas days. He communicated with me by crying, fussing, screaming, grunting, or occasionally pulling at me to lead me to a desired object. His verbal communication consisted of a variety of consonant and vowel sounds that tended to be repetitive and somewhat nonintentional. Occasionally an appropriate word would pop out of his mouth, usually only once, never to be repeated.
One day shortly before his diagnosis, I decided to try finger painting with Benjamin, since it had been one of his sister's favorite activities when she was his age. I sat him down at the plastic-covered kitchen table, carefully placing several opened jars of finger paint in front of him. He looked at the paint, then just sat there.
"Come on, Ben, put your fingers in it like this," I said.
I dipped the fingers of one of his hands in the paint. He whined and quickly rubbed the paint off onto the paper. I grabbed a spatula and ran it through the paint.
"Look, Benjamin, look at the designs," I prodded.
He stared blankly off into the distance. Where are you, Benjamin, I wondered. Sometimes it's like he doesn't even know I'm here, I thought. I snapped a photo of his first attempt at painting, then cleaned him up and put all the painting equipment away, trying to ignore the sinking feeling in the pit of my stomach.
Attempts to read to him met with the same fate. He simply wasn't interested, or couldn't focus on what I was saying. He couldn't sit still to listen to a page being read, much less a whole book.
His sleep was frequently interrupted. He would awaken, crying uncontrollably, jolted awake by some unseen horror. Hours would pass before he was calm enough to drift back to sleep, if he were able to go back to sleep at all.
His diet was very limited. He ate black or kidney beans, cooked or raw carrots, apples or grapes, raisins, fast food french fries, and homemade casein-free bread that I baked for him. If the food wasn't immediately recognizable, it remained untouched. I marveled at the seemingly purposeful selection of only healthy foods, except for his favorite food, french fries. Why does he crave them, I wondered, when all the other foods he chooses to eat are such healthy foods?
He would not play with any toys. If we handed a stuffed animal to him, he would throw it without even looking at it. He would allow me to hug him, but he held his body stiff and rigid, with his arms at his sides. By this time, he would not make eye contact, except when being rocked to sleep at night. He still had eyes that looked right into your soul.
Benjamin reached the point where he was extremely sensitive to all medications. If I had to give him a course of antibiotics, he would throw tantrums and act out for up to two weeks after the last dosage. When he became ill with croup and was having some difficulty breathing, his pediatrician was not available, but his colleague wanted to prescribe oral steroids. I expressed great concern at giving steroids to a child who was so sensitive.
The pediatrician retorted, "You can give it to him now, or if you don't, we can give it to him intravenously tomorrow when we have to admit him to the hospital."
I let fear get the best of me, and took the prescription. There is a well-known side effect of steroids, called roid rage. After this experience, I could understand why professional athletes take steroids. Nothing could stand in the way of what Benjamin wanted. He was extremely aggressive, trying to knock me down, throwing things, and acting extremely angry. My sweet and gentle boy turned into a raging maniac. The effect lasted for ten days. The effect is supposed to occur only if steroids are taken for ten days or more. Benjamin received only two days of medication. I wanted so badly to leave him on the pediatrician's doorstep for a few days!
At that time Benjamin's daily routine was very predictable. He would wake up in the morning and go straight to the playroom to turn on the television and VCR. He would watch several of his favorite videos while jumping on his small trampoline. I would drag him away from the television to dress him. He would sit limply on his dresser as I pulled off his pajamas and dressed him in clean clothes. He would wince as I brushed his hair and teeth. My mother and stepfather would pick him up and take him to the local mall to walk; there he would eat an entire order of fast-food french fries. When he returned home, he would watch videos and jump on the trampoline until lunchtime. He would eat his standard fare of beans, fruits, and vegetables, then return to watching his videos, or run endlessly in our backyard until I came and got him. This continued until something forced its way into his awareness, such as the need for a diaper change.
Then, after dinner, the dressing routine, this time into his pajamas, would repeat itself.
The only time he acknowledged me was when he needed something; then he would cry or fuss or pull at me to try and indicate what he wanted. Caring for Benjamin was more like caring for a small puppy. When he cried, I tried everything to figure out what he wanted. My world was full of hunches and guesses as to what he wanted or needed at any given moment. I ran in circles, trying to make him more comfortable and keep him happy. There were days that I didn't eat a bite of food until my husband returned home from work. The minute I would try to do anything else, the crying and fussing would start, and I would begin the frantic guessing game. If I didn't do my job well, then he would lie down, kicking and screaming, until I figured out what he needed. It took me quite some time just to figure out that when he demonstrated these behaviors, he was trying to tell me that he needed something.
I was caring for an infant in the body of a two-year-old. Sometimes I felt more like a servant chained to a prisoner than a mother staying home with a child. I knew that I was physically and emotionally exhausted when my daughter approached me one day with her soft, pink, lovey doll named Rosie. Rosie was her constant companion and an absolute necessity for sleeping at night.
Handing the doll to me, Karis looked into my eyes saying, "Here, Mommy. You keep Rosie. You need her more than I do."
I remembered reading somewhere that when a child is asked to define "God," the child is most likely to equate god with their favorite lovey item. In her characteristically kind and selfless manner, Karis was willing to give up her "God" in order to comfort me.
When I left Benjamin with my husband or my mother, he often sobbed inconsolably. The time we spent together was his security blanket, even though many times I couldn't even figure out what he wanted. We were both imprisoned by his world. He couldn't get out, and I couldn't find a way in.
When Benjamin was about two and a half years old, I attempted to enroll him in a mother's day out program in a local church. I left him there the first day, not expecting any problems. After all, my daughter had gone part-time to a preschool and adapted just fine. Upon arriving to pick up Benjamin at the church, the teacher took me aside and said that they didn't think that Benjamin was ready for the two- to three-year-old class, and they suggested that he be enrolled in the younger class for 18-month-old children. He was unable to follow directions and participate in the activities and his inability to switch from one activity to the next was disruptive to the class. I removed him from the program, rationalizing that his behavior was due to the fact that he had never been placed in any type of preschool situation before. After all, I thought, those other children had probably been in daycare since birth. Denial can be such a powerful thing. ...
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