I’m standing in front of the frozen vegetables in my local Vons, staring at the peas and corn and wondering what it is I need. My right foot is looped into the bottom rack of the shopping cart and I’m cold. This supermarket is kept at a temperature cool enough to preserve corpses. My sister Maya, my son BB, and I are on our weekly shopping excursion. BB calls this effort “the big shop,” and it’s become a routine we cannot stray from. Every Sunday at four we buy cereal and granola bars, bottled water and corn chips, apples and frozen pizza. We buy large quantities of the four foods that BB will consent to eat at any given time and sometimes, throwing caution to the wind, I try to sneak in a cucumber, rice cakes, a banana. Anything to diversify BB’s menu. I’ve managed to add celery and carrots in this way, although they’re still not the foods of choice. I’m in the middle of an internal debate over whether or not to greet one of the mothers I recognize from BB’s school when BB runs over to me from the Wolfgang Puck display and says, “Mom, I want to pretend I’m being born again.”
“I want to pretend I’m being born again. You can be the mom. Maya can be the baby. The baby me.”
I look at him carefully. His round brown eyes are fixed on mine and he’s waiting for an answer. I can tell, with the understanding I’ve been able to hone over the ten years of this boy’s life, that this is a serious question and an idea he’s gone over in detail, not another repetitious request as to how loud the garbage truck is or why butterflies have to exist.
“But why would Maya be the baby?” I ask him back. “You can be the baby. Again.”
“OK, so can we do it? Can we pretend I’m being born again?”
“Why do you want to do this?” I ask him slowly. Aside from the obvious implications that being “born again” suggests, I’m thinking about our recent visits to Dr. S., the child psychiatrist who told me and my father in the hush of his La Jolla office that, given the birth history I’d provided, it was his opinion that BB’s difficulties, differences, whatever we wanted to call them, were caused by birth trauma. I’ve been vigilant in keeping this information from BB, who was in another room at the time it was delivered. BB records all the conversations he hears internally to be played back later at his own discretion. When the conversations involve him, his attention is that much greater. One of my goals this last year has been to avoid having BB think there is anything wrong with him at all, because, in fact, it is my belief that there is not. But BB is answering me now, and his response has nothing to do with Dr. S. He is talking about another one of his three aunts, my 20-year-old sister Déja.
“Déja told me that when I was born I didn’t have enough breath to cry. So I want to be born again and see what it was like not to have enough breath to cry. Is that true?” he asks, switching gears slightly. “Did I not have enough breath to cry? Did I sound like this?” He makes a strangled, mewling sound in the base of his throat that sounds painful to my ears.
“Well, yes, it’s true, sort of,” I say, wondering, with slight irritation, why my youngest sister always feels the need to present BB with these concepts. I’m always left to clean them up for him in the end.
(A recent discussion went something like this: “Déja says those two people in the movie were French kissing. What’s French kissing, Mom? Why do people do it?”)
“Well, we can try this,” I say finally, “but maybe you want to do it differently this time. Maybe this time you can have enough breath to cry. Do you want to try it that way?”
BB is studying me again, measuring the depth of my interest in his proposal. He can see that the idea is taking root.
“Yes,” he says, “sure.”
Maya approaches us holding a box of Chinese Restaurant Tea. “I forgot this,” she says. “Can’t have stir-fry without it.”
“BB wants to restage his birth,” I tell her. BB looks over at her and nods.
“OK,” she says slowly, checking my expression to gauge the seriousness of what I’m saying before registering a reaction.
“We’re going to do it differently this time,” I tell her. Maya was present at BB’s birth and so she suspects what “differently” might mean. She nods again.
“OK, sure,” she says.
As we head for the produce department, I start wondering if, in fact, we can do it differently this time. I wonder how much of his own birth BB remembers or senses in the recesses of his extraordinary mind. I have the feeling that it could be quite a bit. I certainly remember it as vividly as if it happened last week. So much of BB’s birth is tied to where we are now. Since our visit to Dr. S., I’ve been reliving those moments frequently. And now that he’s proposed this psychological experiment, I am thrust into the wee hours of a summer night ten years past. We were in it together, after all, BB and I. Why wouldn’t he remember as well?
I was convinced I would be a champion in delivery, just as I was smugly sure I had orchestrated the perfect pregnancy. BB, however, had different ideas from the start. He was late, for one thing. My original due date was set at the beginning of July. From the middle of June, I was anxiously awaiting his arrival. This was the first indication, in hindsight, that my child would have a different timetable from my own. My father now cites my impatience as an important psychological factor in BB’s development (“You’ve always rushed him,” my father says, “even from the beginning”). At the time, though, nobody was thinking along these lines. I’d shut myself up for the last few weeks of my pregnancy. I was so large I could balance a teacup and saucer on my protruding belly. It was hot that summer, and I was living in a tiny studio apartment with no air conditioning. For the better part of three weeks, I lay on my sweaty bed faced into a fan, watching the interminable Iran-Contra hearings, which promised to be as endless as my pregnancy. Every evening I stared over at the little trunk I’d filled with tiny baby clothes and blankets. I folded and refolded them, arranged them according to color, tossed them around my bed, and put them back again. An ultrasound taken a week after my due date showed that the baby was a boy. I went home and tied small blue bows on the crib. And waited.
Two weeks after my due date, I was frantic. I could barely breathe and sleeping was out of the question. The baby’s endless hiccups (“An excellent primitive breathing reflex,” my doctor assured me) kept me awake, staring at the changing colors of the sky every night. I couldn’t eat more than a single piece of fruit at a sitting due to my squashed stomach and (I timed it one morning) I was in the bathroom every 15 minutes. Besides all of these mundane physical discomforts, I was beginning to think I was carrying an alien life-form within me. I could see the outline of feet against the tight skin of my belly as the baby moved around in his limited space, but without a proper visual, “baby” became “intruder” at the end of this ninth month. Who or what, I began to wonder, had taken over my body? I also began to suspect that I would never go into labor naturally. It was in this state that I found myself in the hospital’s waiting room on the morning of July 22.
“I’m not leaving until he’s out,” I warned Maya. “I don’t care if they have room or not. I’ll give birth right here if I have to.”
There was one other, nonpregnant, woman in the waiting room listening to this frenzied conversation I was having with my sister. She waited for a lull before she said, “Is this your first baby?” I admitted that it was, and she asked when I was due. When I told her that I was already two weeks past my due date, she nodded sympathetically.
“They going to induce you?” she asked. I answered that this was my fervent hope.
“Make them do it,” she said stridently. “I was three weeks late with my first and they did nothing about it. The baby ran out of oxygen in there. He died. My baby died. They could have saved me if they’d given me an induction.”
I stared at her in open-mouthed horror, unable to come up with any kind of positive response.
“Stand your ground,” she added. “You wouldn’t want that to happen to you.”
My obstetrician rescued me at that point. She appeared like a guardian angel at my shoulder and said, “Good news, we’ve got room for you downstairs. Looks like you’re going to have your baby today.”
I was, perhaps foolishly, unconcerned about the pain of labor. My mother had given birth to five children without any pain medication. Her labors had been short and uncomplicated (at least, this is what she’d always told me). I thought women who complained of endless labors and excruciating pain were wimps who were too emotionally detached from childbirth to appreciate the process. Although I never would have classified myself as a goddess/earth-mother type, I was actually looking forward to birthing my baby. I felt fearless. But it was the process I was focused on in the hours and months before delivery, not the baby. At that point, despite the fact that he’d had a name for seven months, it was still all about me. My response to my birth, to my baby.
My family arrived at the hospital in stages. Maya was with me from the beginning, alternately watching TV, eating snacks from the cafeteria, and keeping a running commentary about the shrieks of pain from other women in labor, all of which we could hear through the walls. Our favorite was the woman who kept yelling, “Ow, ow, ow-ee, ow-ee! Shit! Shit!” over and over again, her words in the exact same pattern each time.
“Ow-ee?” Maya questioned, eyebrows raised.
“Just don’t let me do that, OK?” I begged her. “Just shoot me if I start screaming.”
“Ow-eeeeeeeeeeeeeeeeee!” came the wail from the next room.
“Yup, OK,” Maya said, staring ruefully into her Styrofoam cup. “You know, this is supposed to be hot chocolate, but you’d never know it. Everything comes out of the same nozzle down there: hot chocolate, tea, coffee, soup. I can’t tell what this is. Want some?”
By the time the drugs I’d been given to induce labor had kicked in and I was having contractions every minute, my parents and my siblings were all there, wandering in and out of the room, eating potato chips and chocolate and arguing with each other. It was then that I realized that having a baby is a singular effort. There was no way to drag anybody else in and have them take over. I could barely see and could not move with all the equipment strapped to my body. There were several IV lines and a fetal monitor that amplified the baby’s heartbeat to a level that was impossible to ignore. That rhythmic thump was so loud and elemental I continued to hear it hours after BB was delivered.
After three hours of one-minute contractions, my legs started to shake and I worried about losing control and screaming in agony. The pain was so great it was almost supernatural. I began to wonder if I was going to survive it. Visions of camels passing through the eyes of needles danced through my head.
My mother, worry etched into her face, stood at the end of the bed and grabbed hold of my feet, the only part of my body she could reach, squeezing hard. I looked at her and felt an immediate and deep sense of betrayal. I couldn’t believe that, as my mother, she hadn’t seen fit to tell me about a pain that was, as close as I could equate it, like having my legs tied to two trucks that were driving off in opposite directions.
“Why,” I panted between contractions, “didn’t you tell me it was going to be like this?”
“Would you have believed me?” she answered.
After several hours of hard labor, I demanded that Maya kick everybody out of the room. “I need drugs,” I told her. “Now.”
“But you told me you didn’t want —”
“Now!” I had 30 seconds before the next contraction and I couldn’t afford to waste time telling her how I’d given up on the concept of a drug-free childbirth. I was only four centimeters dilated after ten hours of labor and quite certain that I would never make it without the kind of chemical help that only a day earlier I had sworn I would never take.
The anesthesiologist who gave me an epidural was easily the most popular person in the hospital. Laboring women who saw him greeted him with the fervency of disciples. It was no different for me. Ten minutes after he painlessly inserted a needle into my lower back, I was pain-free and briefly entertained the notion of naming my baby after him. I could feel my body relax in the absence of that intense pain, and I was prepared to go through many more hours of labor. But within 20 minutes, I had progressed to full dilation.
That was the moment when things began to go wrong for BB. The fetal monitor started showing dips in his heart rate with every contraction, and as the minutes passed, the dips became more sustained. Because I had BB at a teaching hospital, I met the doctor who would deliver him only an hour before it happened. This doctor looked at the monitor’s printout with concern and started talking over my body to the nurse on the other side of the bed.
“Have her tracings been like this all night?” he asked, and the nurse murmured something about the last half hour.
Alert now that I was free of pain, I asked him what was going on.
“He’s probably caught the umbilical cord around his neck,” the doctor told me. “Looks like he came down pretty fast after the epidural.” He went on to assure me that I wouldn’t have to worry, that the baby was on his way out now and that he didn’t think it was severe. He also told me that I should start pushing immediately.
I pushed on command, totally removed from any internal cues. The doctor, intern, and labor nurse had all become very serious, engaged in the clipped, instructions-only dialogue peculiar to crisis. In a small, unoccupied portion of my brain, I realized that had I not been in the middle of the most difficult act I’d ever performed, I would have been terrified. I could see nothing over the equipment I was buried under and relied on the reflection in my sister’s eyes to see what was going on in my own body. She was rapt, occasionally prompting, “Come on, I can see the head.”
I heard the labor nurse say, “Lots of hair on this baby.”
I felt my ribs stretching and my body tearing.
I said, “I can’t do this,” and I was ignored.
The doctor said, “There it is, there’s the cord.” I asked if I should push and they all yelled “No!” in unison. The umbilical cord was tightly wrapped twice around the baby’s neck. The doctor had to literally cut it off his throat before pulling him out of me and laying him on my stomach. BB had entered the world strangled by his own lifeline.
BB was positioned so that his face was turned up to mine. His eyes were dark but wide open, and I looked directly into them. They were full of brand-new life, and they were gazing right into mine as if to say, “Here I am, it’s me.” I could see his very soul in that moment, shining and silently beckoning. My hands went automatically out to him, and I cupped them around his small body. “Oh, it’s you,” I said out loud. “I know you.” And then I started weeping.
That look was BB’s first gift to me. Women talk about falling in love with their newborns. There was all of that for me too and more, because, in that instant, I recognized him. He let me in at that very first moment, and I understood the connection between the two of us. In doing so, I missed the flurry of activity going on around us. I didn’t notice that he wasn’t making any sound. I missed the nurse calling out an Apgar score of three (a scale of one to ten measuring heart rate, respiration, and muscle tone on a newborn — three being not that far from dead). I never heard anyone say “blue and floppy.” All I saw was the life, startled but intelligent and powerful, in his slate-colored eyes. My faith in him was born at that moment. Sometimes you get little blessings sent your way that make you believe in a higher power. Sometimes a little grace is thrown in your direction, a silver lining inserted in the darkest of clouds. That moment with BB was mine and I have never forgotten it, nor have I ever denied its power.
I was still weeping tears of joy when the nurse lifted him carefully from me and said gently, “We’ll bring him right back. We’re just going to give him some oxygen. He needs a little jump start.”
It was many weeks before I learned what happened to BB next. My parents, afraid of sending me into frightened hysterics, waited until then to tell me the following scene: My mother, who was outside the door with my father, realized that the baby had been born when she heard me crying. Those tears were familiar to her. They were both anxiously waiting to be let into the room, but moments later, the nurse came out holding the baby and ran across the hall to the neonatal care unit. My mother, predictably, went into a panic. My father was more decisive. He strode across the hall after the nurse and walked into the unit capless, maskless, and unscrubbed. He leaned over BB, who was surrounded by doctors and nurses administering oxygen, drawing blood, and requesting a section of the umbilical cord for blood gases.
My father, who had sworn that, after five children, he was not becoming attached to another (he’d have fun with his grandchild, sure, but no “heavy” attachments), moved through the doctors and put his fingers into BB’s tiny hand so that the baby would have somebody from his family touching him. He started speaking to BB then with words that have not changed in meaning to this day. “Come on, BB,” he said, “get it together. Look at all these other babies, they’re small and red and premature. That’s not you. You don’t belong in here. Your mother’s waiting for you. You’re big and fat and healthy. Come on and breathe now. Come on, BB, breathe.”
A nurse finally had to detach my father from BB and push him out of the room, saying, “It’s OK, he’s not going to die.”
When the same nurse came back into my room to get information for BB’s birth certificate, she gave me an update on his condition.
“He’ll be fine,” she said. “We’re just trying to get a good, solid cry out of him. Your dad’s in there talking to him.”
“Yes,” she said, smiling. “It’s really cute.”
A team of doctors and nurses blew oxygen on BB for several minutes. They poked and prodded him, beginning a series of tests for possible infection, but he never did capture enough breath to cry that morning. When they brought him back to me, wrapped up like a burrito in his blanket, he was making little growling noises, his eyes closed firmly against the glare of his new world. He refused to nurse. He refused to do anything but lie in the little Tupperware-like container they set him in, breathing fast and shallow.
I lifted him out of the Isolette and put him beside me in the bed so I could lie next to him and study his face. His eyes were still shut tight, and his miniature brow was slightly furrowed. His tiny mouth was set in an expression I could only have described as disgusted had I not been so entranced by the cuteness of it. He was one pissed-off newborn. When he continued his hunger strike and irregular breathing over the next several hours, his body temperature dropped and a concerned nurse took him away again. “We’ll need to do some more tests,” she said.
I was discharged from the hospital the following morning. Alone.
“Some more tests” turned into five additional days in the neonatal care unit. BB was tested for infection, for lung problems, for blood problems. He had a spinal tap and an IV inserted in his scalp. His breathing continued to be rapid and shallow, and he grunted as opposed to crying. He wouldn’t take formula from a bottle. He didn’t wet his diaper. The doctors found nothing to indicate what the problem might be.
After I was discharged from the hospital, my first stop was at the dark underground office of an astrologer. This was my way of seeking answers to the unanswerable questions that had suddenly been thrown my direction. It would be the first, but by no means the last, time I’d seek enlightenment regarding BB outside the traditionally accepted means and professionals. I walked into the office uncertainly and with my eyes full of tears. The astrologer was there with an associate, both of them nudging 70 years of age.
“Wait a minute,” the astrologer said to me, “you mean you just had this baby yesterday?”
“Yes,” I said, “he’s having some problems. I want to have a look at his chart.” I explained that he had been strangled by the umbilical cord and that he was having difficulty breathing. The astrologer presented me with his chart and told me that it was lacking the element of air.
“That’s probably the problem,” she said. I tried to imagine walking into the neonatal care unit and explaining to the doctors that my baby was born without air in his chart and that was why he was having trouble getting enough of it to breathe. The thought was almost funny enough to make me laugh. I thanked the astrologer and paid her, but when I headed toward the door, she stopped me.
“You know, you’re very lucky,” she said. “I lost my first child in this way, with the umbilical cord around his neck. A few years ago they couldn’t have done anything for you and your baby. You are very lucky.”
I walked as fast as I could toward the door and my mother, who was waiting for me in the car.
I spent the next five days going back and forth to the hospital, trying to persuade BB to take my breast and whispering in his ear that I wanted to bring him home. Leaving the hospital without him was devastating. Besides feeling that I was still physically attached to him and, thus, now missing a portion of myself, I also felt gut-wrenchingly guilty, as if I were abandoning my newborn to a team of cold professionals. I knew about infant bonding and was concerned that I wouldn’t achieve it with my child.
In the glare of the neonatal care unit, I saw the same feelings reflected on the faces of other parents. Most of the babies in the unit were getting better, since the unit was a step down from intensive care. Nevertheless, many of the babies were still sick, underweight, and laden with equipment that dwarfed their tiny bodies. Some of the parents wept silently and some were fairly loud. Some were angry and some rarely visited their babies. One mother pointed out her baby and told me that he was a twin. His larger, healthy brother had booted him out of the womb early and stayed to enjoy the space for a full month. The sick brother had an indentation on his head that was a mark, the mother explained, from his brother’s foot.
In between visits to the hospital, I sat with my mother in her kitchen, weeping into my teacup. “I want him back” was all I could say.
By way of comforting me, my mother told me the story of my own birth. I’d heard bits and pieces of this story over the years, but now the details seemed much more relevant.
“You were delivered by midwives,” she told me. “Everything was fine at first, but then they weren’t happy with how you were breathing. You were a little blue at first, and they thought maybe you had tissue in your lungs. They kept you in this thing called a ‘Charlotte box,’ which was sort of like an incubator. Then you developed jaundice and turned yellow.”
“Blue, then yellow,” I said. “Very colorful.”
“I also had to leave you in the hospital and go visit you every day before I could take you home. And see, everything turned out all right in the end, didn’t it?” she said.
“Sure,” I said, feeling sorry for myself, “everything turned out just great.”
Nothing ever did show up on the tests administered to BB. “Birth Trauma” was the best and most general term anybody seemed to come up with to describe BB’s lack of enthusiasm at being alive.
“I think he’s angry at being born,” I told a nurse late one night as I held him in the artificial hospital glow.
“Well, that may be,” she said with the weary tone of someone who had heard more than her share of whispered and frantic pacts made with God, “but if he doesn’t start eating soon he’s going to become a ‘failure to thrive’ baby. We’re going to have to put in a feeding tube.”
I thought about the phrase “failure to thrive” and decided it was unacceptable. “Please, BB,” I whispered desperately, “please eat. I don’t want them to put a tube down your throat. Please.” To this day, when I plead with BB to reach inside himself and find the strength I know is there, my words have held the same urgency they had then.
At that moment, BB snapped out of his resistance and began to take formula greedily from the hospital bottle. It would be weeks before I could sell him on the breast, but the fact that he was finally taking nourishment was enough for me right then. I could have said it was because he somehow heard me and responded, but it’s likelier that he was just following his own schedule. BB has been like this ever since. He cannot be coerced into anything with even the most tantalizing enticements. He made up his mind to give it a go at five days of age and so he did.
When BB was discharged from the hospital shortly thereafter, I was given a few caveats. Watch his breathing. Check his eating. I had to pass a crash course in infant cpr before they would let him go. Let us know, they cautioned, if anything seems abnormal. Because of his low Apgar scores, a nurse was dispatched to my apartment after several weeks to check on his neurological development. Everything seemed fine, she assured me and, oh, isn’t he cute?
I know that BB’s birth was traumatic. Anyone there could have testified to that. Although I wished it could have been easier for him, I assumed, at the time, that all births must be traumatic. It’s the nature of the process, after all. Who in his right mind would trade an existence of swimming in protected warmth for the cold, bright gravity of the world? What I didn’t understand, and what was never mentioned to me until ten years later, was the possible significance of strangulation at birth and the accompanying lack of oxygen. I had just turned 25 when BB was born, and I thought I knew everything. I know now that I was in a state of almost total ignorance, running on pure faith. Perhaps if I had known that extreme birth trauma could pose lifelong problems, I could have done something sooner to counter the effects. Perhaps I would have done nothing. I will never know.
I do know that I’ve filled out countless medical-history forms for BB over the years, all of which ask about his birth. The questions are always the same:
Was the pregnancy normal?
How long was labor?
Cord around neck? How many times?
Did baby need oxygen at birth?
I’ve given detailed oral reports to a host of professionals in my search for answers. Many of BB’s pediatricians, endocrinologists, and therapists have been impressed with my recall and understanding of the terminology. I wonder why, then, none of them ever saw fit to mention that BB’s traumatic birth could have some bearing on the troubles he continues to experience. Perhaps they assumed I already knew. Or perhaps they saw it as a moot point. A what’s-done-is-done sort of thing. Or maybe I never considered it because I believed in BB from that first moment in the delivery room and, just as surely, I have always known that he is different. This is what he showed me in the first seconds of his life and what he continues to show me when I need to see it the most. That he is suggesting, now, that we go back and try it all over again only proves what I’ve known all along.
Yes, I decide, we will go back there, we will do it again. Perhaps a reenactment of his birth will show BB a clearer path. I’m proud of him. He has come up with his own therapy. But it probably won’t be enough.
The problem is that we’ve still got to go out there and face the world. And the problem is that, although I know the answers to the standard medical-history questions, I still don’t understand their meaning. What I do understand are the answers to the questions they don’t ask — answers I’ve been increasingly unwilling to share in the uncompromising glare of science and medicine:
Did your baby look at you at birth?
Did he show himself to you?
Did you see his soul?
Could you hear it singing?
Make no mistake, it came as no surprise to me that my son was different. Differences have always been more than byproducts in my family; they have been imperative. My childhood memories involve my father telling me, my sisters, and my brother that we were unusual. Not just run-of-the-mill bright, artistic, or beautiful, although he believed we were all of those. We were, he said, different from any other family. He never articulated exactly what this quality was; it came merely from being part of the seven-member team that was our nuclear group. When we went “out there” (meaning any place that wasn’t home), he said, we had to play by the rules set up by the world. “Figure out what your teachers want” was his advice for performing at school, “and give it to them.” For a long time, my sense of what he was saying was that we were a little island of alien beings masquerading as regular humans. My father was apparently ahead of his time. Thirty years after he made these pronouncements, a slew of popular books and television shows cropped up with exactly the same theme. It seems more than a few people can relate to a sense of daily alienation, whether this is presented humorously in 3rd Rock from the Sun or melodramatically in Roswell.
And with his own family, my father wasn’t that far off the mark. My childhood was unconventional. We moved regularly, sometimes as often as yearly, and not just across town. My parents moved across continents. By the time I graduated from high school, I had attended 13 schools in three countries. My parents never moved because of their jobs, because of schools, or to be closer to their parents. When my classmates asked me if I was an Army brat, I had to laugh. No, the young freethinking nomads who were my parents were looking for the perfect place to raise their tribe. Their five children were my parents’ primary creative pursuit, and they employed an unusual mix of open-minded idealism and traditional moral codes in raising us. For example, my mother encouraged me to read her collection of Carlos Castaneda’s work when I was 13, but that same year she slapped my face in disgust when I asked her what she thought of oral sex. My father taught me to cast horoscopes but wouldn’t allow me to get my ears pierced. Above all, my parents stressed our connectedness and reinforced our need to support each other. The results of their efforts can be seen in the terms we now use to classify anyone who is not a member of our family:
- Not one of us.
- Could, maybe, with some work, be like one of us.
It seemed separatist at the time and still seems so now, but this philosophy has resulted in an extraordinary closeness and affection between all the members of my family. I have lived with my sister, Maya, for over a dozen years. We share almost everything. Although the rest of my siblings live in other houses, we all eat dinner together at least once a week. We speak to each other daily in a sort of shorthand round-robin. Of course, there are a few odd little anomalies. One of us doesn’t drive. One has a secret passion for the romance novels she stashes under her bed. One can only work the graveyard shift when nobody else is awake. But we are comfortable in our peculiarities. We are products of our differences, and this is what we have always known. When one of my sisters recently sought out a therapist to discuss her life, she was disappointed when the therapist suggested that her problems were normal and that her family seemed amazingly functional. My sister had been hoping for a bigger payoff.
I was in no way alarmed, then, when my own child exhibited differences early in his life. BB never crawled, for example. He preferred to slide backwards on his head to get where he was going. At 12 months he just got up and walked. He had an acute sensitivity to loud noises and an appreciation for all kinds of music by the time he was four years old. He never showed any interest in drawing pictures, but he developed names for different shades and gradations of color. He toilet trained himself within a week when he was two but preferred to sit backwards on the toilet until he was seven. When he was a few weeks old, my mother gazed down at his sleeping face and made a declaration.
“He knows things,” she said.
“What do you mean?” I asked.
“I can’t describe what I mean,” she said. “But I can tell. He knows things. Trust me, I’m not wrong.”
Since my mother has always been given to these sorts of pronouncements, I wasn’t surprised by this one. In fact, I barely gave it a second thought. As time went by, however, I realized she was right. BB has an ability to sponge up the environment around him and project the feelings, emotions, and undercurrents he senses therein. More often than not, he states what is obvious to him. When a date arrived to take me to dinner, he stated, “Nice to see you. You’re pretty confident tonight, aren’t you?” He asks strangers if they have problems with their families. He can tell when a person is a bad driver.
None of these oddities seemed disturbing to me when BB was younger. He was beautiful, luminous, and receptive. He was special, yes, undoubtedly. I expected this. He was, after all, one of us.
I was, therefore, completely unprepared for the disaster of BB’s first day of kindergarten. BB had seemed ready, willing, and even happy to start school, and when he turned five, I enrolled him in a spanking-new elementary school in a lovely, spanking-new upper-middle-class North County neighborhood. I was as excited as any other video camera–wielding parent on his first day. I waited for the bus after school with my own video camera. But before BB could even get off, his teacher got off and told me that there was “a little problem.”
Stunned, I was called to an emergency meeting with the school psychologist, special education administrator, speech therapist, special education teacher, and the kindergarten teacher. These staff members composed the Individual Education Program team, and I would be meeting with them from now on, they told me, to discuss BB’s progress. From where I sat at the end of the long conference table, they reminded me, vaguely, of a parole board. BB, they told me, was unable to handle a regular kindergarten class and should be transferred to a special education class immediately, pending further evaluation. I had no idea what BB could have done in the three hours of his first day of school to warrant this. Notes were pulled out, observations were shared. He won’t follow teacher-directed activities. He can’t cut and paste and doesn’t initiate play with other children. He didn’t want to come back inside after recess was over and pushed the teacher away when she tried to make him. I explained that BB had never been around children his age, he had never cut or pasted or used scissors at home. He’d never been in preschool. He did know all 50 states, his numbers, and his letters. He could tell the difference between Billie Holiday and Ella Fitzgerald.
The team was not impressed. It was their opinion that there was something wrong, although they couldn’t tell me what it was. They assured me that special education was the best place for BB and that he could only benefit from it. They also told me that we would have to decide on a “handicapping condition.” The law required that a child, to qualify for special education, had to meet certain criteria. Some of my choices included specific learning disability, deaf/blind, orthopedically impaired, autistic, mentally retarded, and speech-and-language impaired. The school psychologist suggested we go with speech-and-language impaired since that was the closest.
By that point, however, I had lost focus. There was an unbridgeable chasm between how they saw my child and how I did. I couldn’t understand how I saw nothing wrong with him and they saw everything. Was I blind? Was I stupid? Was BB a totally different child in school? How could anyone pass a judgment like this in three hours on the first day of school?
There isn’t much that can compare with the swirl of feelings a parent experiences after a meeting such as this. There are so many issues fighting for room in the brain and heart. I kept looking at BB, searching for clues as to what they were talking about and what I could have missed in the five years since his birth. I had never so much as suspected that what I had considered “special” would now be regarded as “wrong.” I went through several stages of grief at the same time; I was angry, guilty, and in denial. And every day for the entire school year I went through all of these emotions again. Because I never suspected that school problems would be in store for BB, I was ill-equipped to handle what felt like a full-scale attack in those first days, and I do believe that the tenor of those early meetings has affected my attitude toward the school system ever since.
It was what I perceived as the staff’s insensitivity that affected me the most. I still feel that many administrators and teachers have inadequate skills when it comes to talking to parents about their children. Imagine telling a parent that you think her child needs special services, has developmental delays, tests out as mentally retarded, has autistic-like tendencies, seems obsessive-compulsive. Now imagine telling a parent who thinks her child is just fine, thank you, the same thing at the beginning of that child’s career. Surely, tact should be the preeminent goal and perhaps a dash of compassion thrown in. Almost none of BB’s educators in his first year had children of their own. While having children is not a prerequisite to teaching, I felt that none of these young women understood how my heart was bleeding.
That meeting was the first in a collision course between me, my son, and public school. Since that day, I have visited an assortment of professionals, from psychiatrists to educational specialists, seeking an answer to the question of what is “wrong” with my son. Although I’ve had a grab bag of wildly differing opinions thrown my way, I have never been given a real diagnosis. Nor do I expect to be. I don’t think there is one, unless “totally different” makes it into the Diagnostic and Statistical Manual of Mental Disorders. Of course, this doesn’t mean that I won’t continue to be pressured into unearthing a diagnosis, nor does it mean I won’t stop looking myself. After all, definitive diagnoses are comfort foods in today’s world, something you can hang your hat on, someone or something you can blame, a biomedical bonanza for the weary. It was very different when I was my son’s age. As a friend of mine said, “In our day, kids like this used to smoke cigarettes and take wood shop. They got by.” Perhaps she’s oversimplifying. Perhaps not.
For a long time, I wallowed in a sense of persecution on BB’s behalf. I felt the outside world would never understand my son. It was just as my father had always told me. I was alternately guilty, angry, and sad that BB seemed to have such a difficult road ahead of him and that I could do nothing to change it. Sensing this, BB retreated further into his personal world as I watched him through the lens of my frustration.
When BB was nine years old, he decided that he wanted to follow a classmate home instead of going to the after-school day-care center he attended twice a week. An alert day-care worker noticed his absence and gathered him up before he could get far. Although nobody at school seemed to worry too much about the incident, I was shocked. I hated to think of the possible consequences if BB had escaped the campus unnoticed.
This threat to his physical safety made me realize that, in focusing on his problems, I had stopped paying attention to BB himself. It was I who didn’t understand him. I began spending more time with him and having real conversations with him. I quit the office job I had taken a year earlier and went back to my previous profession, waiting tables, full-time so that I would have my days free to devote to BB. I went to school with him every day for a year and acted as his personal aide. I sat at his table in school, observed his peers, and watched him process the sights, sounds, and information around him. Finally, I was able to see what the world looked like through his eyes.
At the end of that year, the school hired me to work as an aide with other special-needs children. For the next two years I worked with a range of kids from preschool to sixth grade who had learning difficulties running the gamut from autism to dyslexia. In effect, I got into bed with what had been the enemy. As an employee of the school, I was able to see the mechanics of the system, understand how the administration worked, and watch what teachers and aides went through daily. I learned the language of education and of team meetings. I heard what teachers and school psychologists said about the students and about the parents. To say this was enlightening is an understatement. I also spent time in regular education classrooms. Everything I saw convinced me that it’s difficult being a kid today, much more difficult than I remember it being for me, and I wasn’t one of those kids who relished the joys of childhood.
One of the main benefits of my time in the school was that it enabled me to listen to my son more effectively. And once I really started listening, I discovered some phenomenal truths. This child, who professionals had offered to label (alternatively) autistic, mentally retarded, and emotionally disturbed, drew pictures of his own birth. He wrote beautiful poems with a natural sense of rhythm. At the age of 11, he correctly diagnosed every child in his special education class based on the various terms he’d heard applied to himself. He then gave specific and accurate arguments as to why none of these diagnoses fit him. When I asked him what he wanted to be when he grew up, BB, for whom school had been such a struggle, said, “I want to be a teacher because I want to change the rules.”
Words and communication have always been important to me as a writer. It seemed ironic, then, that I had been given a child who forced me to reconstruct my notions of communication, learn another form, and then interpret this alternate form for his educators. Of course, there was no small lesson in it for me. Perhaps the clearest example of this came when I explained to BB what metaphor was and how liberally he used it every day. Most people, I stressed, didn’t make the connections between things the way he did and, therefore, wouldn’t understand him when he said he was upset because he heard a “black noise” or that he got “red lasers” in his stomach when he was afraid. Simpler language, I told him, would be easier for people around him to understand. BB comprehended everything I said to him. But at the end of my discourse he said simply, “But, Mom, isn’t metaphor important?” I didn’t have to think about this longer than a millisecond to realize that metaphor is ultimately important. The ability to think metaphorically signals the ability to see the connectedness among all the disparate elements of the world.
In our quieter times, when we weren’t trying to navigate the shifting landscape of social expectations and when I wasn’t trying to figure out the best way to please the school staff on BB’s behalf, my son allowed me to see the weight of metaphor and allowed me to see that, often there is an eye of clarity in the middle of a hurricane. Those times often came on Sundays, when the rest of the world had rubbed off and we were alone.
Sunday begins with seeds. Poppy and sesame. BB sits in the living room one Sunday past watching TV and eating bagels, scattering seeds into the carpet. He has an unusual method of consuming the bagels, peeling them and then eating the outer, seeded crust.
When I emerge from my bedroom to join him on this day, I see the doughy carcasses of at least three skinned bagels lying on his plate. The smell of onion flakes is in the air.
“I had a bad dream last night,” he tells me.
“What was it?” I ask.
“I dreamed there were a whole bunch of garbage trucks lined up at the school and they were all making a very loud noise and I had to cover my ears. How loud was it, Mom?”
“I don’t know, BB, it was your dream.”
He considers this briefly before he says, “Just tell me how loud it was. Give me a number.”
“I can’t give you a number for how loud something was that you dreamed about.”
“OK, then how loud do you think it would be?”
“How loud what would be?”
“How loud if a whole bunch of garbage trucks were lined up in front of my school?”
“I don’t know. And I told you I don’t want to keep doing this thing with assigning numbers for every noise, remember?”
“OK, this is the last time.”
“No, I’m not doing it.”
“Just give me a number.”
“Any number how loud it would be.”
“OK, 25, but that’s the last time —”
“Only 25? Don’t you think it would be louder?”
“BB, that’s enough.”
BB gives the questioning a rest for a moment, but he’s still processing my responses. I hear him mumbling something about trucks, school, loudness. After a while, he says, “Mom, that couldn’t really happen, could it? There couldn’t be so many garbage trucks lined up at my school, could there?”
“Yes, technically it could happen,” I tell him, “but it won’t. I really don’t think you’ll ever see a whole bunch of garbage trucks lined up at the school. The school doesn’t make that much garbage.”
“Was it only a dream?”
“Yes, it was only a dream.”
We drift off into our own silent reveries for a while, and I attempt to make it through the Sunday paper. I hear BB call my mother on the phone.
“Nana,” he says, “how loud would it be if there was a whole bunch of garbage trucks outside my school? Give me a number.”
There is a pause and then I hear him chuckling. My mother and BB are constantly finding ways to make each other laugh. Each one thinks the other is tremendously amusing.
“Get dressed, BB,” I tell him, “we’re going out for a walk.”
BB protests, as he usually does. “I don’t want to walk, walk, walkery-walk,” he says. We begin the series of negotiations I know so well. He will get dressed, but only in 20 minutes. He will go for a walk, but only if we can stop for a soda. It’s all right to visit Vons, but Ralphs is out of the question. I tell him we’ll go to Starbucks and we settle that, but he refuses to go to Barnes & Noble so I have to argue with him. He has to read a biography and write a report on it for school and we’re going to look for a suitable book today.
“I don’t want to do the stupid biography,” he says.
“Too bad,” I tell him.
Once we are out of the house, I feel liberated. BB, too, is happy to be out, and he links his arm into mine. I have always loved these outings with him. Since he was an infant, I’ve been taking him on walks to the beach, to the movies, any place there was a coffee shop where we could stop and rest before turning around. When he was younger, at first fitted into a front pack and later strapped into a stroller, we seldom spoke. Now that he walks beside me, our Sunday strolls are times when we discuss everything.
We pass a construction site where a new block of townhouses is going up, and BB wants to know how the electricity gets into the buildings. He wants to know why there is a fence erected in front of the development and can we go behind it and walk around? A car with muffler trouble roars by, and BB asks me to give the noise a number.
“I don’t want to keep giving the noises a number,” I tell him.
“Well, why are there so many loud noises in the world?” he asks.
“Why do you let them all bother you?” I question back.
“I can’t help it,” he says, “my yellow wire is broken.”
“What do you mean, yellow wire?” I ask, baffled.
“When I was born, they didn’t put the yellow wire in right, so it got broken and now I have trouble with loud noises.”
“Honey, you need to explain this to me,” I tell him. “Do you have other wires too, or just the yellow one?”
“No, there’s other wires,” he says, pleased that I’m taking an interest. “There’s a blue one and a red one. The blue one is for talking and playing. The red one is for feelings. The yellow one is for hearing. There’s a girl in my class who has problems with her red wire. That’s why she cries all the time.”
“And so you figure your yellow wire is broken?”
“Yes, it was too short when they put it in so it snapped.”
“Who put it in?”
“I don’t know. Somebody.”
“So tell me,” I go on, “is there any way of fixing a broken wire? You know, so that the loud noises wouldn’t bother you so much?”
“Yes,” BB says, thoughtfully. “You have to find a white wire and patch it together.”
“Where can we get the white wire?” I ask him.
“I don’t know,” BB says. “I guess we have to look for it.”
By then we are at Starbucks, and so the conversation shifts to what kind of snack we will have. As BB sits and chews on a scone, the topic turns back to the biography.
“I don’t know who to do it on,” he tells me. “Nobody. I want to read a biography of nobody.”
I think about this for a minute and remember the time that each student in BB’s class was given a letter of the alphabet and asked to choose a word beginning with the letter and then draw a picture of that word. The idea was to create a book as a class project. BB has always hated drawing. He can never re-create the pictures in his head on paper, and it frustrates him no end. He was assigned the letter N. After thinking for a while, he turned in his assignment. He had chosen the word “nothing” and left the space for the picture blank. I am beginning to think the biography might go the same way.
“BB, you can choose anyone for this biography,” I tell him. “Think about all the famous people you’ve heard about.”
“Do they have to be alive?”
“No. You can do it on somebody who’s died, like a musician or a composer. How about Beethoven or Mozart?”
“How about Marvin Gaye?” he asks. “That’s who I want to do for my biography.” I ponder this. It’s a great idea, I think, because he’s come up with it by himself, but now I’m torn as to whether or not to shoot it down. I doubt that I’ll find a kids’ book on the life of Marvin Gaye, and how could I read him an adult biography on this man? I have a moment picturing BB presenting this report to his class, telling them about Gaye’s drug problem, singing “Sexual Healing,” telling them that Gaye was killed by his own father. No, this is not going to work.
“Maybe Marvin Gaye’s not such a good idea,” I tell him. “There aren’t any kids’ books on him.”
BB is irritated by this information and refuses to discuss the biography any further. When we get to the bookstore, I have to convince him to consider someone else to read about. We finally settle on Thomas Edison, but BB is not finished with the Marvin Gaye issue.
“Mom,” he says, “did someone kill Marvin Gaye?”
“Who killed him?”
“Some crazy guy,” I say, unwilling to go into detail. BB senses I am not telling him the whole truth.
“I think it was one of his backup singers,” he says.
We take the walk home slowly, passing a small canyon on the way. BB dances along its lip, a little ahead of me. I watch the way his boyish body cuts the space of blue sky and sandy earth and the unbridled joy in his movements. When we are approaching home, he asks me a question he’s been pondering for the last few minutes.
“Remember that frog that was stuck in the drain that one time?”
I do remember. Two years ago we came across a frog trapped in a swimming-pool drain, struggling vainly to get out. “Yes,” I tell him, “I remember.”
“We didn’t rescue it, did we?”
“I asked you to put your hand in there and get it out, remember? You didn’t want to do it.”
“Well, I thought we should just turn him into a prince.”
This is the piece of the story I’d forgotten. BB had been adamant. He wasn’t going to put his hand in there to get the frog. The solution was simple: we could just turn him into a prince and then his worries would be over.
“Well, that didn’t work, did it?” I say. “It’s not so easy to turn a frog into a prince. It would’ve been easier to pull him out.”
“Whatever happened to him?” BB wants to know.
“I think someone else rescued him,” I say, although I’m not sure of this at all. “Why are you thinking about this now?”
“I don’t think we tried hard enough,” BB says. “We should have turned him into a prince.”
The rest of the afternoon unfolds lazily and turns into darkness. We follow our established routines: we eat dinner, I cajole BB into the shower and, finally, I tell him it’s time for bed. He complains, saying he’s not tired, he doesn’t like his sheets, his bed’s too small, his room is the wrong shape, but finally he yields and allows me to tuck him in. I kiss his cheek and he tells me, “Mom, do you think that frog got out of the pool? He didn’t die, did he?”
“No,” I tell him, “I don’t think so.”
I make sure that he’s looking at me and then I tell him, “I love you.” These words are always the last I want BB to hear from me before he goes to sleep or school or before I leave him, no matter where I’m going. I’ve become superstitious about this. I want him to always know how much I love him. If I don’t tell him, I am convinced, I will suffer. My house will burn. I will lose all that is precious to me. I sense that BB has always understood and accepted this.
“I love you too, Mom,” he says and I turn off the light.
I take the pill early one Tuesday morning and feel the effects almost immediately. First comes a sort of electrical buzzing that starts in my chest, works its way into my jaw, and settles at the base of my neck. My breath starts to come quicker and shorter. My fingers tingle. My heart starts doing annoying little flips, as if it misses a beat and goes back to make up for the loss with a double. I cough. The buzzing sensation moves into my head and my eyes feel tight. After an hour, a ragged ache claims a band around my head, where it will remain. There is no “rush” that I can distinguish, but 20 minutes after I take the drug, I am talking faster and getting organized. Sure, I think, I can write on this stuff. I could also probably be talked into cleaning the bathtub with a toothbrush or organizing 30 years of loose photographs. I could write a term paper. The term paper seems particularly appropriate because the feeling I am experiencing reminds me of my college days, when other students and I would drink coffee until our bladders threatened to burst and, when that no longer did the trick, scrounge around for whatever stimulants the chemistry majors had cooked up that week. We took whatever would keep us awake. Once I even saw a hardy soul in the library snorting lines of espresso.
My chest feels constricted, and my head is alive with noise. I’m not enjoying myself. Those college days are long gone, to be sure. Inexplicably, I decide to make myself some coffee. I drink two cups and go over the edge. My heart pounds, I begin to sweat, and my eyes feel stabbed with pain. I am now useless, irritable, and uncomfortable.
When the drug wears off a few hours later, I feel sapped, disoriented, and tired. Much later, when, according to the literature, the drug should have been metabolized and passed out of my system, I lie awake in bed staring at the blackness of the ceiling.
I am not the only one in my house who can’t sleep. In the hours after midnight, the shape of my son hovers next to my bed, outlined dimly in dark.
“I had another nightmare, Mom,” he says. His voice is tremulous and still soaked with sleep.
“What was it?” I ask him.
“I dreamed I was a cartoon character. There were black lines drawn around me. I couldn’t move off the paper.”
“It’s only a dream, honey,” I tell him and take his hand. “See? You’re not a cartoon. I couldn’t hold your hand if you were a cartoon.”
He doesn’t seem comforted. He wants to know if I’ll walk him back to bed. In his room, he puts on his headset and listens to Miles Davis’s Sketches of Spain. He wants his door closed so that nothing can get in. Or out. I kiss him and assure him that he remains three-dimensional, but he’s drifting away, still troubled.
Now in my own sleepless bed again, the tears start. I know how my son feels and I know why he can’t sleep and why he’s having nightmares. After all, today we have both been on the same drug. It’s not speed, cocaine, or anything cooked up by college chemistry majors. No, it’s more insidious.
I’ve been opposed to psychotropic medications for children, especially my own, for as long as I can remember. Undoubtedly part of the reason is that I grew up in an environment where this kind of practice was frowned upon. Which is to say, my parents didn’t trust doctors and harbored serious misgivings about the practice of psychiatry. It was their opinion that almost all domestic problems could be solved with the right kind of discipline, love, and attention. They kept doctor visits to a minimum. I remember visiting clinics to get my immunizations and that was it. I didn’t visit a doctor for a physical, sick call, or checkup until I was an adult. The same was true for almost all my siblings. Aside from one broken leg and one appendectomy, my family remained disease- and accident-free. My parents were medieval in their approach, but they were also lucky. They were never faced with an indisputable need for treatment with drugs; therefore, their attitude was that most drugs were unnecessary. And they reserved their greatest disgust for drugs like Ritalin given to children.
I was forced to rethink these notions from the day BB was born. From the outset, he had odd medical issues that had to be dealt with pharmacologically. His thyroid levels were low at birth so at seven months he was put on a synthetic thyroid hormone. He stopped growing at the age of four, and after extensive testing, it was determined that he was growth-hormone deficient. He began treatment with daily injections of growth hormone and remains on it now. My parents were devastated. Wasn’t there anything else I could do? they wanted to know. Wasn’t there a natural remedy? BB’s doctor had assured me that without the growth hormone he would become what is known as a “pituitary dwarf.” I didn’t need any further convincing.
Aside from the mysteries that lurked in his pituitary, BB developed asthma at the age of two, an all-too-common disease. Because I had no experience whatsoever with asthma, I didn’t even recognize BB’s symptoms until he needed to be hospitalized. There were drugs aplenty to combat his asthma: theophilline, albuterol, and prednisone. I administered them without question. Again, my family offered resistance. Why did I have to give him such heavy drugs? they wanted to know. “Breathing,” I countered, “is extremely important.”
I have never resisted treatment for my son when his health was at stake. Still, every time a new malady presented itself, I researched it and I researched the drugs that were used to treat it. After all, not too long after BB was given theophilline for his asthma, his doctor told me that she no longer prescribed it as a standard course of treatment because the drug could build to toxic levels in the bloodstream, causing seizures and brain damage.
With the exception of very few, the doctors I questioned about the effects and efficacy of drugs looked at me warily, spoke to me as if I were a child, and offered little explanation. After I expressed concern over giving BB the now-mandatory hepatitis B vaccine, his doctor said to me, “I wish you parents would stop reading all this stuff about medicine. It’s dangerous.” What was really dangerous, I thought, was his attitude, because I wasn’t coming out of left field. BB had had bad reactions to all his vaccinations, and I had seen more than one article mention dire, if rare, reactions to the hepatitis B vaccine in children. I didn’t want to take a chance.
But the doctor was right about one thing, I did read everything I could get my hands on about drugs. BB’s medical issues had thrown me into a world I knew almost nothing about, and I wanted to become educated. So, in addition to researching growth hormone and prednisone, I started reading about a class of drugs that was moving into the limelight just as BB was starting school. I am referring now to the selective serotonin reuptake inhibitors, or ssris. The ssris are antidepressants that influence the amount of serotonin present in the brain. An older class of antidepressants, the tricyclics, influence all the brain’s neurotransmitters. The first ssri to enter the mainstream was Prozac, but there were many more to come, including Zoloft, Paxil, Celexa, and Luvox. Intrigued, I read Listening to Prozac when it was published, and then I read the answer to that book, Talking Back to Prozac, which I found more convincing. I saw what seemed to be a trend toward the “Prozac nation” that Elizabeth Wurtzel addressed in her book of the same name. Even my own doctors since the early ’90s (and these are general practitioners, not psychiatrists) have recommended one of the ssris for everything from stress to backache. These days, one can hardly avoid these antidepressants. Talk of them is everywhere (they even advertise in TV Guide), prescriptions for them are profuse, and, periodically, articles either denigrating them or extolling their virtues pop up in papers and magazines.
I have a deep distrust of these medications. Part of this stems, no doubt, from my upbringing and my parents’ attitudes. But another component of my wariness comes from the fact that, often enough, drugs touted as cures later turn out to be more dangerous than the maladies they address. Who hasn’t heard of thalidomide? des daughters? And who hasn’t seen an article blaming school shootings on the prescribed antidepressants that the shooters were taking? I have too many unanswered questions about the long-term effects of drugs to feel comfortable with the claims of short-term benefits. Of course, this is just my opinion. I am free to take or not take any drug prescribed to me and feel vindicated if my concerns are borne out or happily surprised if they are not. But whether or not I take drugs is not the issue in my life; it is whether or not I give them to my son.
For his first couple of years in school, no teachers, doctors, or psychologists recommended that I medicate BB. But he started school in 1992, when Prozac was making its first appearance in the mainstream and before diagnoses such as pervasive developmental disorder, Asperger’s syndrome, and bipolar disorder were being regularly applied to children. From his first day, the school was clear that BB needed to be in special education, but nobody wanted to hazard a guess what was “wrong” with him, nor did anybody suggest a drug that might make him “right.”
A short time later, though, I started receiving a subtle but insistent pressure to not only have him formally diagnosed but to “put him on something.” Special education, it seemed, was not enough. BB wasn’t necessarily getting any “worse” in school at that time. He had good months and bad. In kindergarten, he stayed almost exclusively in a special ed class. In first grade he spent the entire year in a regular education class. Halfway through second grade, he went back to special ed. And so it went.
When BB started fourth grade, I began feeling substantial pressure to get him diagnosed. Apparently, there were all kinds of new maladies to choose from, subsets of the old standbys. For example, there was pervasive developmental disorder — not otherwise specified, which was the vaguest of all possible labels. The way I understood it, pdd-nos was an umbrella term for a collection of symptoms that looked as if they came from other disorders. For instance, lack of eye contact is usually an autistic characteristic, but what if the kid only avoids eye contact some of the time? Autistics are usually nonverbal and perseverative, but suppose you have a child who is verbal, cognizant, yet perseverative. To me, it seemed that pdd-nos meant “all the stuff we think is weird and doesn’t fit into any category yet.” pdd-nos was what Dr. S. had diagnosed for BB. When I questioned him about what it meant, what caused it, and what the future held, he sighed and said, “Although we in the medical profession don’t like to admit it, there are some things we just don’t know.”
What about drugs? I asked him and his answer was equally vague. There weren’t any medications that addressed BB’s issues specifically. We could try a couple of the antidepressants, maybe Prozac, maybe one of the tricyclics, but it would be an experimental process. I thought about experimenting with BB’s already unique brain and every hackle rose. There was no way.
I can’t say that the school staff was thrilled with my “say no to drugs” stance. The school psychologist urged me, in the nicest possible way, to try again, perhaps there was something else… Even as I grew friendlier with the school staff and special ed administration (and after BB’s fourth-grade year, I was working for them), I found it difficult to trust their motives. Perhaps that sense of trust had been trashed on BB’s first day of kindergarten when they gathered around me like a Greek chorus sounding the call of doom. My father told me that my distrust was irrational, that even though we disagreed with them, he was sure BB’s teachers had only his best interests at heart. That might be, I countered, but whose best interests did it serve to have BB medicated, possibly zombied out, in the long run? Not BB’s certainly. All it would do would be to make him more manageable for them.
No matter which way I tried to twist it, I couldn’t help myself from feeling like this. I was reminded, almost constantly, of One Flew Over the Cuckoo’s Nest. To me, BB was always McMurphy struggling against the system, and the professionals I encountered were always Nurse Ratched looking to neutralize him. Ultimately, it was impossible to determine who was sane, who was not, or even if a concept such as “normal” existed. The only available life raft to hold on to in this stormy sea was my belief that BB should not be medicated. I dug my heels in. No drugs.
But in sixth grade everything changed once again — which brings me back to my Ritalin tale. Over the course of fifth and sixth grades, BB had a teacher who, despite my several years of wariness, I came to trust. After working with BB in summer school one year, this teacher lobbied to have BB in class and it proved a good fit. BB made up tremendous ground in this class, and so I became a devotee. I wasn’t alone. Almost every parent who had a child with this teacher felt similarly. One parent phrased it this way: “He walks on water.” For many of us, I believe, it was the first time our special ed kids were treated as if they were average and normal. “We’re going for the beige in this class,” the teacher said. “Everybody blends.”
Of course, blending has never been BB’s strong suit, and every few months he’d put up a fight, claiming he didn’t want to work, it was too hard, too loud, too quiet, too hot, too dark, whatever would get him out of what he was doing. His teacher’s stalwart position on discipline was an open invitation for BB to defy it. Still, BB learned despite himself. BB’s teacher didn’t suggest that I medicate him, but he mentioned that I might want to have BB reevaluated once more. Perhaps with a definitive diagnosis, he said, I might find more help for BB. After all, middle school was looming and, after that, high school. Had I thought about what would happen to BB out there? In essence, this was the same thing I’d heard all along, but now, delivered by someone I had come to trust so completely, it didn’t sound like a bad plan. And what about medication? I asked the teacher. Well, he said, you shouldn’t do anything you’re not comfortable with, but there are a lot of good medications now and maybe, well, you just never know.
So, once again, I tried to open my mind to the possibility of a magic bullet both in diagnosis and medication. There were more choices now as well. Asperger’s syndrome, on the autism spectrum of disorders but with several markedly different characteristics, was becoming more frequently diagnosed. In addition, bipolar disorder, which I’d previously been told was never diagnosed in children, was becoming the new “hot” diagnosis for kids. There was also sensory integrative disorder, but that most commonly got tacked onto a more established disorder as a sort of bolster. Obsessive-compulsive disorder was mentioned more than ever before as well. Gone were the simple days of adhd (attention deficit hyperactivity disorder) and eating disorders (although those often joined the party as “components”). Now there were newer, better, and bigger fish to fry.
On a recommendation from a psychiatrist friend, I took BB to see Dr. B., another psychiatrist in another La Jolla office. After a 45-minute session, Dr. B. was convinced that BB had all the classic signs of adhd and prescribed Ritalin.
“Gee,” I told him, “I’ve heard just about everything but adhd. That’s a new one for the smorgasbord.”
Although I was suspicious of the rapidity with which Dr. B. arrived at his diagnosis, I was almost happy with it. In the face of all the strange, dark maladies on the table, adhd seemed like a lucky break and Ritalin like a gift. What I found odd, though, were the reactions I got from those I told that I’d finally caved on my anti-drug stance. “I’m proud of you” was the most common statement I heard from the teachers and school staff. Pride was the last thing I felt. My friends applauded the decision. My family was less enthusiastic but, like me, only wanted life easier for BB. One school administrator congratulated me on my decision and then added, “You know, they’re having really good results when they combine Ritalin with a little bit of Prozac. You might want to think about that option.” Her enthusiasm astonished me. It was like I had finally decided to become part of a club. A cool club.
At first, BB seemed to have little reaction to the Ritalin. His teacher reported no real improvement in his behavior. BB was still leaving class when he felt like it and still refusing to work when it didn’t suit him. When I asked him how he felt after taking the pill, BB shrugged. I raised the dosage and added a pill at lunchtime. BB didn’t mind traipsing off to the nurse’s office before lunch and taking a pill. After all, plenty of his peers did the same. After I upped the dose, BB’s teacher told me that he seemed a little more focused. I held out hope.
About this time, however, BB started showing physical effects. His sleep patterns became erratic. Sometimes he’d have nightmares, and sometimes he’d wake up in the middle of the night and not be able to fall back asleep. His eating habits changed too. He was either famished or refusing food altogether. And then he started to become irritable in the afternoons. When I was in college, we had a word to describe his condition: crashing.
“I’m just not sure about this drug,” I told my father.
“Well, have you tried it yourself?” my father asked. I admitted that I hadn’t. The thought hadn’t occurred to me. I felt my father had a valid point. I had spent BB’s whole life trying to make his environment safe. I put plugs in sockets and tested jars of baby food. I wouldn’t let him watch violent TV shows and trained him to look both ways before crossing the street. I wouldn’t let him eat candy he’d dropped on the floor. But I’d been giving him a powerful stimulant without having even an inkling of its effects.
So I took a single dose, no more or less than BB got every day. After the subsequent sleepless night, I was divided about continuing to give my son this drug. As fate would have it, I had help in making a final decision. The Journal of the American Medical Association came out with a report on psychotropic drug use in very young children just as BB was in the middle of his course of Ritalin. The report, which was profiled in Newsweek, Time, U.S. News and World Report, and newspapers around the country, detailed an astronomical increase in prescriptions for Ritalin in the years between 1991 and 1995 for children as young as three and four years old. Ritalin, however, wasn’t the only drug the report mentioned. There were all my favorites — Prozac, Zoloft, and Paxil — plus some newbies — Clonidine, Risperdal, and Depakote. Clonidine is used to treat high blood pressure in adults. Risperdal is an antipsychotic. Depakote is an antiseizure medication. As for the antidepressants, U.S. News and World Report stated that the total prescriptions for ssris (adults and children) in 1999 were 84 million.
Although I’d seen the medical-journal report on my own, I started receiving articles from friends who knew about my struggles getting BB through school. By the time it was all done, I had an inch of paper on my desk. There were articles about the role of hmos in overprescribing psychotropic medications, articles about the decline in psychotherapy and behavior modification. There were articles profiling desperate parents for whom drugs had restored a sense of normalcy in their and their children’s lives and articles by doctors who swore by the efficacy of antidepressants versus doctors who vilified their evils. Most interestingly, I read an op-ed New York Times piece by Elizabeth Wurtzel describing her horrifying addiction to Ritalin as an adult.
I began to think I’d had a lapse of sanity myself. Clearly, Ritalin hadn’t worked any magic for BB. Rather, it was having a bad effect on him physically. What the hell was I doing giving him a drug that I didn’t believe in for a condition he probably didn’t even have? When I questioned Dr. B., he shrugged and asked if I wanted to try something else. I asked the doctor if he could speak with BB’s teacher. Perhaps that way he’d have clearer insight into BB’s behavior at school. Dr. B. said he’d try to fit it into his schedule and looked down at his watch. I left his office and never went back. I also took BB off the Ritalin. Again, his teacher reported not much change. But this time, the teacher went further. He suggested that perhaps BB needed a stronger drug, that perhaps we were looking at something more serious than adhd.
I took quite a bit of heat for my trial with Ritalin. Aside from my family, nobody thought I had done the right thing by ingesting the drug myself. How could I gauge the effects the drug had on BB by taking it myself, they wanted to know, when it was proven that children responded differently? My point exactly. Why would I give a drug that was too strong for me to my child? Just because children reacted differently didn’t mean the drug was having a weaker effect. Besides, I argued, BB was responding badly to it. The risk-benefit ratio seemed tilted toward risk.
I wish I could say that our brief encounter with Ritalin marked the end of our long day’s journey into pharmaceuticals, but it didn’t. Nor could I ever settle the issue that easily. The problem was and still is that I can see both sides of the dilemma.
When BB was taking Ritalin, I was working as a special education aide in an elementary school. Almost every child I worked with was on one or more of the drugs mentioned in the various articles on my desk. There was a line at the nurse’s office at lunch and recess. Parents were constantly “adjusting meds,” and teachers were consistently reporting on subsequent behaviors. Some of these behaviors were easy to report. Some of the kids couldn’t keep their eyes open and conked out on their desks. Some of them had stomachaches. Some drooled. A few showed no signs at all. There were familiar refrains among the staff:
“Did Mom switch his meds?”
“Is she off her meds again?”
“Isn’t he doing great on those new meds?”
I might add here that these kids were in regular education classes for most of the day. There was an almost overwhelming relief among teachers when children were started on a course of drugs. And who could blame them? Their arguments were convincing. With a class of 30 kids, how was it possible to teach the prescribed curricula in the time allotted when a few kids were disruptive, inattentive, unfocused, and unmanageable? Teachers complained bitterly about having to cater to kids with special needs when they shouldn’t be mainstreamed in the first place. These kids were so much easier to teach when they weren’t jumping out of their skins — when they were on medication. And, really, wasn’t that in the child’s best interest? Many teachers and staff were taking antidepressants themselves. At one point the teacher of an adhd student said, “It’s an absolute sin that this child is not on medication.” The student’s mother had tried Ritalin and, like me, had decided it was having a negative effect on him physically.
Although their attitude sounds draconian, I understood the teachers’ point of view. Most of the time they were grossly underpaid, understaffed, and overworked. I knew plenty of teachers who shelled out their own money for class materials. To top it off, the teachers were expected to make sure students performed well on the standardized tests that were the worshipped conduits of public funding. Add to this children who were off the scale in terms of ability or behavior and their overconcerned or underconcerned parents who fluctuated between extremes of denial, anger, grief, and self-righteousness. The teachers in regular education had no training with which to combat this kind of onslaught. And, as for the aides (of whom I was one), they got paid barely above minimum wage to teach, toilet, comfort, paint, soothe, discipline and, of course, make copies. I have met and worked with teachers who were gifted, indifferent, devoted, talented, ignorant, stern, and loving, but I have yet to meet one who wished harm on her children. Most were simply burned out, and the issue of jumpy kids with learning problems or newly fashionable disorders was one more match to the ashes. Yes, it was easier when they were medicated. For everyone.
I had no problem with the way teachers, school psychologists, and special ed administrators felt about medication. What I did have difficulty reconciling was that teachers and school staff often found themselves in the position of tentatively diagnosing the kids in their classes and then suggesting medications to parents. If not quite as overt as this, many teachers encouraged parents to “explore options,” and school psychologists, although they weren’t medical doctors, mentioned specific drugs by name and offered up diagnoses as if they were doughnuts. I had direct experience with this when a school psychologist, after unsuccessfully attempting to categorize BB with a series of standard tests, offered to change his handicapping condition (that qualified him for special ed) to mentally retarded.
I can understand why teachers and school staff become involved in this cycle of diagnosis and medication. It is they who spend the most time with these children. But I don’t think — have never thought — it should be the teacher’s job to venture into the business and practice of psychiatry, as so many of them seemed to do in my experience. I don’t believe I would have given BB Ritalin in the first place had it not been for the encouragement of a teacher I trusted and respected. I am in no way assigning blame here because I don’t think there’s any to be given. But I wonder if there is a subtle drift toward putting teachers in the position of doctors. In the end, who will do the actual teaching?
When BB started middle school, the issue of medication presented itself again with a vengeance. It is difficult to describe just how many things went wrong in the first weeks of seventh grade. The main problem was that there wasn’t much of a special education program in place at the school, and nobody, it seemed, had ever seen the likes of BB before. BB capitalized on the lack of hard structure by exiting his classroom and refusing to come back inside. He screamed, he carried on, and he generally acted like a nut. Usually, he got what he wanted: a get-out-of-jail-free pass from class.
One of the places he went frequently after these outbursts was the office of the school psychologist. The school psych took an immediate interest in BB, but not the kind I wanted. Although he couched it in the most PC terms, the psych told me that he was “very concerned” and “quite disturbed” and felt BB had “some serious difficulties.” No kidding, I wanted to tell him. But then I began to hear that familiar refrain once more, “Have you considered medication?”
Trying to be polite, I explained my philosophy on and history with the psychotropic-drug issue. He wasn’t having any of it. He was convinced that BB was hearing voices, seeing flashing lights, experiencing panic attacks and, although he never said it, I knew he was thinking psychosis. I began to panic myself. I knew that BB’s many visits to therapists had only helped his ability to manipulate a situation. He tells these people what he thinks they want to hear. If it gets him out of class and out of working, all the better. What complicates this is that BB really is different, really doesn’t fit in, really can’t function in what passes for a regular classroom environment today. He isn’t faking all of it. Yet, when I mentioned to BB that it seemed odd he saw flashing lights only when forced to do classwork, he gave me a wry look that said he knew the jig was up. He hasn’t used the flashing-light excuse since. At least, he hasn’t used it with me.
Of course, I was unsuccessful in convincing the school psych that BB wasn’t a mental case and, as the days marched on, BB did everything in his power to prove me wrong. Medication as a possibility was brought up every day with increasing urgency. The school psych even told my mother (whom he had never met) over the phone, “It’s a very sad situation. BB really needs to be on medication.”
Ultimately, I decided to consider it again. BB did seem as if he wasn’t going to make it through school without being drugged. I had reached a critical impasse once more. On one hand, I had a kid who I knew was intelligent and capable of learning. On the other, I had his impossible behavior at school and the fact that he was on the verge of puberty and no longer dealing with a teaching staff who thought he was cute and cuddly. In the middle was BB, confused, obdurate, and unhappy. Every day, I left him at school and came home to indecision and fear. I felt like Sisyphus trying to roll a Gordian knot up the side of a Rubik’s cube. Once again, I thought I should take BB to another psychiatrist and try to get a diagnosis, and maybe this time try him on anti-anxiety medication so at least he wouldn’t spend every school day in a state of panic. When I mentioned this to the school psych, he said, “I think anything would be good at this point.”
This time I interviewed psychiatrists over the phone, trying to give them a clear picture of BB before we walked in the door. Finally, I settled on one and made an appointment. Before I could take BB, though, he seemed to calm down at school. He still resisted doing his work and still exited his classes, but he wasn’t hearing noises or seeing flashing lights or screaming. The educational advocate I had retained a couple of months earlier came to observe BB in class at this time. When she called me later, she said, “He’s got them all eating out of the palm of his hand. They’re so afraid that he’s going to start bouncing off the walls, he gets whatever he wants.” As she continued to talk, I knew she had a fundamental understanding of what BB was about. From the second he was born, BB has been on his own timetable and has done things his own way. His will is stronger than any I’ve ever encountered. They haven’t yet come up with a medication to counteract the stubbornness in this child. My advocate agreed. “I think as long as he’s conscious, he’s going to be who he is,” she said. “I think he’d probably fight any drugs you’d give him. And I think he’d probably win.”
I had yet another change of heart. It’s true, medicating BB would make him easier for his teachers and for the school to deal with and, by extension, it might make life easier for him too. But when I cut to the real reason why I was taking BB to another psychiatrist, I had to stop myself. Basically, I wanted to get him diagnosed with something so that he could take a pill that would even him out enough to get through school. There was something wrong with this picture. BB, although always unique, was happy and comfortable at home. I would not be medicating him because I couldn’t handle him at home or because I felt like he was in immediate danger. I would be medicating him for the benefit of the school. I canceled the appointment.
The drug question has never been simple for me, and I have no idea what the future will bring. Although my son’s adolescence and adulthood loom ever closer, I can’t say if he’ll be able to handle the pressures that will come. I know I am painfully limited in orchestrating his destiny. All I know to be true is my essential faith in him. If, in the future, we were offered a drug that was tested, proven safe, and addressed exactly what makes navigating the social and academic milieu so difficult for BB, I would give it to him. Hell, I’d take it myself. Nor do I have any quarrel with parents who give their children medication. These are the choices parents have to make, and we have to make them based on our faith and what our hearts dictate. I want to be able to make this choice without pressure or derision. This is what my heart tells me.
Shortly after BB suggests that we restage his birth, I put the idea to my family. Every one of them seems taken by the idea, and we discuss ways to implement it. My father is especially eager to replay the scenario. We try to round up the original players. This is difficult because, while everyone was present in varying degrees the night BB was born, my three sisters and my brother now have obligations, jobs, and responsibilities that make it impossible for them to be in my living room at the appointed time. I want to act on BB’s idea soon, and I don’t want it to escalate into a psychological tour de force.
My father and mother arrive on a lazy fall afternoon, and with all this in mind, we prepare to venture into unknown territory. I am nervous. I want it to go the way BB wants it this time.
I order a pizza.
BB is excited. When I look at him I can see that he’s already halfway there, heading back to that place between floating sleep and conscious awareness. I begin by placing a pillow under my shirt and sitting on the couch. BB sits off to the side, unborn, watching. My father narrates.
“Now BB,” he begins, “when you were born, you came out gasping. Let me show you how.” My father sits down next to me on the couch, leans over, and puts his head in my lap. When I look down, it is my father’s face I see staring up at me.
“Uh, Dad,” I interrupt, uncomfortable, “this is getting a bit too Freudian for me.”
“Yes, it is,” my father says warningly, “but you’re going to have to transcend your own neuroses for a minute and focus on what we’re doing here.”
I concede reluctantly, and my father demonstrates how BB panted at birth. I can’t wait to get this part over with. BB watches, entranced and soundless.
“Now, this time,” my father continues, “you’re going to come out when you’re ready, and you’re going to take a deep breath and cry really loud. OK?”
BB nods assent.
“OK,” my father says, “here’s Mommy getting ready to have you. There you are inside her tummy.” I make noises indicating that I’m in pain. This is no joke — I’m having visceral memories of labor. “It’s time to come out,” my father says, “but wait until you’re ready.”
I make more noises. I’m starting to sweat. I turn to my mother. “Why didn’t you tell me it was going to hurt like this?” I ask her again. I never was satisfied with her answer the first time. My mother looks at me somewhat disdainfully and says, “Don’t start with me now.”
“Mommy’s in pain,” my father goes on, “and she wants to see you. Are you ready?” BB shakes his head. I’m finally starting to get it. He’s never going to be ready. He didn’t want to come out then, and he doesn’t want to now. Minutes pass as I continue approximating labor. The doorbell rings. The pizza deliveryman has arrived early for the first time ever. My father is annoyed at the interruption, but BB does not stir, does not lose one iota of his concentration while the man is paid and sent on his way and the pizza deposited on the kitchen table.
“Mommy’s still waiting,” my father picks up. “Are you ready?”
BB seems like he might stay in this nether state indefinitely so I start “pushing” and pull the pillow out from under my shirt. “Look!” I shout, “Here he is!”
BB moves over and places his head on my stomach. When he looks up at me I am startled by what I see in his eyes. It is exactly the same, this look, as it was the moment he was born. Once again, I can feel the tears starting.
“Cry,” I tell him.
“Cry!” my father shouts.
BB makes a scratchy, strangled sound.
“Louder,” we urge him. “Take a deep breath. Louder!”
It takes BB three tries to get out a wail. I can see the struggle within him and can hardly believe the strength it must be taking for him to get to this level. We hold our breath, waiting to hear evidence of his. Finally, he bursts out a long solid cry.
“Good, BB,” my father says. “Good.”
Instinctively, BB snuggles close to me, and I cradle him as if he were a newborn once again. “How did that feel?” I ask him.
“Good,” he says. “It felt good.” When I look at him now I can see that he is grinning widely. I’ve rarely seen him look this happy and contented.
We’re all pleased with BB’s reaction, and he seems reenergized. We are also wiped out. I can’t help but think this is the sort of thing that has “don’t try this at home” written all over it. We eat pizza and then my parents leave. An hour later, BB starts wheezing and becomes asthmatic. It is only then that I realize how important this event has been for him and how important it has been for me.
But he is breathing and, finally, he’s had his chance to cry out loud.
I’ve been given an extraordinary luck with this boy. Twice in his life he has shown me the life and intelligence in his eyes. Twice he has given me a glance right into his soul. It is my faith in this soul and this life that I must always remember and what I must always lean into.
When I was seven or eight years old, I read and loved a series of Finnish fantasy novels in which the main characters are funny-looking creatures called Moomins. In my favorite story, the creatures find a magic hat that transforms everything put into it. Moomintroll, one of the main characters, hides under the hat and comes out changed. None of his friends recognize him, and everybody treats him like an impostor and an intruder. In despair, Moomintroll beseeches his mother to tell his friends that he is Moomintroll. His mother looks deeply into his eyes, and it takes her a minute because he does look different. Finally, though, she sees her child. As soon as she acknowledges this, Moomintroll is transformed back into his usual appearance, and his mother assures him that, whatever happens, she will always know him.
The story made an impression on me and I never forgot this scene, although it would be years before I understood its practical implications. It is the same for me and my son. Under all the psychiatric evaluations, school problems, counselors, advocates, medicines, and doctors, there is BB and there is my faith in him. He has taught me about faith and about so much else. I will parent him, fight for him, and love him always, but in the end, he will be the one to show me the way.
This is what we have been given.