PART ONE
Living with
a Child’s
Brain Disorder
The four chapters of Part One focus on what a no-fault brain disorder is and how it affects—directly and indirectly—the lives of children, their parents, their teachers, their friends, and the rest of the world. This section also explores the role of the health professional in the treatment of children’s brain disorders.
CHAPTER 1
It’s Nobody’s Fault
It’s a typical day in early October. The school year has started, so I’m seeing quite a few new patients. The first child I talk to is William, age seven, who starts my day off with a real bang. William’s motor just won’t quit. He doesn’t sit or even perch. He walks around my office, touching everything as he goes. At one point he sits behind my desk and spins in my chair. William’s nickname at home is “The Magician,” because he’s always making things disappear. “He can lose his homework walking from the kitchen to the bedroom,” his mother tells me.
After William comes Margot, nine years old and as quiet and sad as William is animated. Her parents tell me that Margot has trouble sleeping. For the last two months she’s been getting up every night and crawling into bed with Mom and Dad. They give her warm milk, rub her back, and put her back in her own bed, but a short time later there she is again. Sometimes they find her asleep on the floor of their bedroom in the morning. When her parents leave my office so that I can speak to the little girl alone, Margot starts to cry. I tell her that Mom and Dad are waiting right down the hall. She begs me to let them stay just outside the door.
I see a lot of good-looking children in my line of work, but my next patient, 11-year-old Kenny, with his dark skin, dimples, and huge hazel eyes, would stand out in any crowd. Kenny has come to see me because his parents are worried that he might hurt himself. According to his mother and father, Kenny has always been conscientious and hardworking, giving “110 percent” to everything he does. His grades are excellent, he’s a better than average athlete, and he has plenty of friends. Until recently he seemed fine. A few months ago, however, he turned cranky and irritable. One night not too long ago he became more upset than his parents had ever seen him; he said that he wished he were dead and locked the door to his room. He’s been complaining of headaches almost every day.
“She’s driving us crazy,” said Delia’s mother within seconds of crossing the threshold of my office in the midafternoon. Delia, 10 years old, didn’t look as if she could drive anyone crazy. She had a winning smile and a delightful personality. But she’s been making demands at home that her parents can no longer meet. The ritual that she insists on at bedtime is the worst, her parents say. Every night she says, “I love you, Mom” and “I love you, Dad,” and her parents have to say, “I love you too, Delia” right back. The problem is, they have to go through this exchange 20 or 30 times before Delia will let them turn off the light. A few nights ago they decided not to follow the script and sent her to bed with just one “I love you” apiece. Delia got hysterical. “She was obviously in real pain,” her father told me.
My last patient of the day was Tobias, age 16, who looked, from a distance, like a typical teenager—baggy clothes, huge athletic shoes, single earring, surly expression. Up close I could see that he was pale and tired, and I soon learned that the bagginess of his clothes wasn’t just the latest fashion; Tobias had lost a lot of weight. He just didn’t feel like eating. In fact, he didn’t feel like doing much of anything. “Everything’s just so boring” more or less summed it up for him. He didn’t make eye contact when we spoke. His parents told me that Tobias stays up until all hours of the night and then takes four-hour naps after school. He’s also missed a lot of school.
DISORDERS OF THE BRAIN
William, Margot, Kenny, Delia, and Tobias, like all the other children described in these pages, have many things in common. All of them have brain disorders; all of them have responded well to treatment, including medication; and all of them have parents who care. Their parents have something in common too. When they first brought their children to see me, virtually all of them thought, or at least suspected, that what was wrong with their children was their fault. Those worried, guilt-ridden parents couldn’t be more wrong. What’s troubling their children is nobody’s fault.
According to a report issued recently by the Institute of Medicine, one quarter of the United States population is under the age of 18, and at least 12 percent of those under 18 have a diagnosable brain disorder. That’s 7.5 million children and adolescents—boys, girls, rich, poor, black, white—with psychiatric disorders. That’s roughly 15 million parents who feel guilty about it.
One of the reasons parents think that they’re to blame for their children’s emotional and behavioral problems is that people are always telling them that they are. Teachers, relatives, friends, even strangers aren’t the least bit reluctant to share their opinions with the parents of troubled kids. The mother of Freddy, a six-year-old boy I was treating for attention deficit hyperactivity disorder, summed it up very well when she said, “My husband and I have gotten a lot unsolicited advice, and just about all of it has been bad. First people said all Freddy needed was discipline, and they blamed his illness on us. If I would just quit my job and stay home with him, he’d be fine. My sister thinks that Freddy has problems because I weaned him at three months. She breast-fed her two girls until they were nine months, and they’re fine. My husband works long hours, so my family blames him too, saying that Freddy would be okay if my husband would take him to more baseball games. People made us feel like negligent, uncaring parents.”
Old ideas die hard. Until 20 years ago there was a general belief that early childhood traumas and inadequate parenting were responsible for childhood psychiatric disorders. Although we know better today, that antiquated way of thinking is still supported by many mental health professionals, perpetuated by the media, accepted as gospel by too many teachers and other school officials, and espoused wholeheartedly by well-meaning relatives. People who wouldn’t dream of blaming parents for a child’s other diseases—asthma or diabetes or multiple sclerosis, for example—don’t hesitate to embrace the notion that a child’s behavioral difficulties are caused by working mothers, overly permissive parents, or absent dads.
The fact is, when a child has a brain disorder, it is not the parents’ fault. It is also not the fault of teachers or camp counselors or the children themselves. A brain disorder is the result of what I call “DNA Roulette.” In the same way a child comes into the world with large ears, a tendency to go gray in his twenties, or, like Kenny, beautiful hazel eyes and deep dimples, a child is born with a brain that functions in a particular way because of its chemical composition. (The chemistry of the brain is explained at length in Chapter 5.) It is brain chemistry that is responsible for brain disorders, not bad parenting.
At conception a child receives genes from his parents, half from his mother and half from his father. As parents with more than one child know very well, those genes aren’t donated in exactly the same configuration every time. A child’s precise genetic makeup is largely determined by chance. Genetic messages from both parents come together to create many different combinations. If that DNA Roulette wheel stops spinning on a “lucky” number, the brain works properly and the child is normal. If not, the brain is dysfunctional. There is no reason for parents to feel guilty about their child’s psychiatric disorder. There’s nothing that any of us can do about our genes. The good news is that there is a lot we can do to treat the problems that genes can cause in our children.
Over the past two decades genetic influences in psychiatric disorders among adults have been fairly carefully studied, but science has only recently begun to focus attention on brain disorders in children and adolescents. Still, the studies that we do have are quite persuasive. Studies comparing the frequency of brain disorders in identical twins (who share the exact same genetic makeup) to the frequency of brain disorde
rs in fraternal twins (who are only as genetically similar as any siblings) show that if one twin had a psychiatric disorder, the other twin was more likely to have it too if he or she was an identical rather than fraternal twin. The conclusion: many childhood psychiatric disorders have a genetic component. Adoption studies that investigated the genetic influences of psychiatric disorders in children who were raised from a very early age by adoptive parents, and compared their incidence of psychiatric disorders with both their biological and their adoptive parents, came to the same conclusion.
Animal models, especially those conducted with Rhesus monkeys, who have a 94 percent genetic similarity to humans, also support the theory that brain chemistry is genetically transmitted. In studying the neurochemistry of these animals and their reactions to stress and other environmental factors, experts have established in yet another way that nature is a stronger force than nurture. Of course, nurture does play a part in determining how a child will feel and behave. An unfavorable environment, in which a child is abused or unloved, certainly will have a detrimental effect. If that child begins life with a brain that is vulnerable to a disorder, a demoralizing environment is strike two.
THE FINE ART OF STORYTELLING
“Right after my daughter Serena was born, I was very sick. I spent most of the first year of her life in bed. I gave the baby as much attention as I could, but I was way too sick to be the kind of mother I wanted to be. Serena was difficult as a baby, and over the years she got much worse. There were a lot of problems with her behavior. When she was four, we took her to a child psychiatrist, who told us that Serena had separation anxiety disorder. He said it was probably caused by my not being available to her when she was an infant. If I hadn’t gotten sick, she probably would have been completely normal. One part of me didn’t believe what the doctor said. It isn’t as if I abandoned her or anything. But I felt tremendous guilt anyway. I cried for a week.”
Serena’s psychiatrist wasn’t the first person to make up a story to explain away a child’s problem, and he won’t be the last. People do it all the time; they see a set of symptoms and create a story around them. What’s the rationale of this disorder? they ask. What has happened in this child’s life to explain this abnormal behavior? Traumatic birth, adoption, illness, parents’ divorce, strong mother, weak mother, an overachieving older sister—all of these and many more have been used to rationalize children’s psychiatric disorders. One mother told me that her 10-year-old son wet his bed every night because he had skipped second grade. The impossible behavior of a nine-year-old with obsessive compulsive disorder was attributed to the fact that the little boy, who was always bossing people around, was simply imitating his father, the CEO of a Fortune 500 company.
Even when these ingeniously fabricated stories make a small amount of sense, science is all but ignored. The psychiatrist who told Serena’s mother that it was her sickness that brought on Serena’s separation anxiety disorder was forgetting the fact that many children with sick mothers—or no mothers, for that matter—do not end up with SAD. What’s more, there are many children with SAD whose mothers have never spent a single day in a sickbed. People who become convinced that A causes B often lose sight of the facts. For example, it is widely believed that bulimia is the result of sexual abuse, but there is little evidence to support this theory. Sexual abuse is a common phenomenon, and bulimia is a common disorder; it stands to reason, therefore, that there will be a substantial number of women with bulimia who have been sexually abused. That still doesn’t prove a cause-and-effect relationship. Many women who have been sexually abused don’t have bulimia or any other disorder, and many women with bulimia have not been abused.
There are millions of people who endure traumatic experiences—abuse, divorce, the death of a loved one, skipping second grade, and so on—without having to be treated for a psychiatric disorder. Naturally, all children are affected by the events of their lives. If a child is abandoned or beaten, it will most certainly change the way he looks at the world and reacts to it. If his parents get a divorce, it will unquestionably have an effect on him, probably a significant effect. But unless he has the brain chemistry that makes him vulnerable to a psychiatric disorder, the child will not end up with a disorder. By the same token, a brain disorder doesn’t miraculously disappear if the unpleasant environmental factors are altered.
NORMAL DEVELOPMENT
Not all children develop at precisely the same rate, of course. Still, the developmental milestones that follow will give parents a rough idea of what to expect.
At one month a child will react to voices and be attentive to faces. By four months he’ll smile at people and respond socially to both familiar and unfamiliar people. At six months a child will sleep through the night. At about age one he’ll walk and say his first word, usually “Mama” or “Dada,” and he’ll have developed a clear attachment to a caretaker, usually but not necessarily the mother. Also at one year kids start “pretend play,” having tea parties with imaginary food and pretending, for example, that a toy cup is real.
At two years old a child can draw a circle, and he starts to use symbolism: a pencil represents a person, or a block becomes a chair. At the same time kids have “idealized representations”; they don’t like broken dolls or toys or anything that has something wrong with it. Kids develop empathy at about this time; if a child hears a baby crying, for example, he’ll say that the baby’s hungry or hurt. By the time a child is two, he’ll be comfortable around strangers with his parents nearby and capable of parallel play: two or more children playing in the same room at the same time but not together. The kids may not speak or otherwise interact as they go about their tasks. Most two-year-olds have a hundred words in their vocabulary and speak in sentences of two words, such as “Big boy,” “More food,” or “Come here.” Girls usually have a more advanced verbal ability than boys, so a two-year-old girl probably will have a much more extensive vocabulary than a hundred words.
At around age three most children are toilet-trained, and they have a thousand-word vocabulary. They move on to reciprocal play, building sand castles together or engaging in some other mutually enjoyable activity. With reciprocal play there’s a connection between children, even if it is a fight. At three kids can sit for 20 minutes of story time or some other activity. By the age of four they stop wetting their beds at night and use complex grammatically correct sentences. At four a child can separate comfortably from his parents; he’ll be able to stay at a birthday party for an hour without his mother in the room. He will also be able to share toys, follow the rules of a game, and function in a group with minimal aggression. A four-year-old might be afraid of the dark or of animals, but that fear is usually transient.
At five years old children like to hear stories read repeatedly and enjoy rituals throughout the day, such as having a snack as soon as they get home from school, playing with certain toys in the bath, and sleeping with the same teddy bear every night. At six kids have a vocabulary of about 10,000 words, and they learn to read. They frequently start to collect things—rocks, dolls, basketball cards, and so on—and may become fond of superheroes. At seven they may develop superstitions and rituals: step on a crack, break your mother’s back.
From age eight through adolescence, children focus on school performance. Competition and ambition become more important in their lives. Boys and girls begin to develop a value system based largely on the beliefs learned from their family. Their social sphere widens, and friendships begin to take on greater meaning.
The developmental milestones associated with adolescence are less specific in terms of age; there are basically five developmental tasks that must be accomplished by a youngster between puberty—approximately age 11 for girls and 12 or 13 for boys—and the end of adolescence, about age 22. There are enormous physical changes that take place during adolescence, especially hormonal fluctuations, and brain chemistry goes through changes as well.
The first task youngsters must accom
plish is to separate from their parents. Naturally, this separation process doesn’t happen all at once; it comes about gradually, in steps, such as flirting with ideas that are different from those of their parents or favoring music and wearing clothes that adults hate. By age 22 a young person should be completely comfortable about being separate from his folks, regardless of geography. The second task that faces an adolescent is the development of a network of friends. At age 13 or 14 a child begins to find his peer group important. The greatest influences in his life remain Mom and Dad, but he’s influenced by his friends and shares intimacy with them. The third task is sexual orientation. Sexual fantasies usually start at puberty; by the age of 22 a young person, even one who is not sexually active yet, should know which gender arouses him sexually. Task number four is the setting of educational and vocational goals. At age 12 that means finishing a math project or learning the history of Syria. When a youngster is 17 or 18, his goal may be to get into college or find a job. By the time he’s 22, he should have a good idea of what he wants to be when he “grows up.” The fifth and final developmental task of adolescence is adjustment to the physical changes that take place during this period. It’s important for a child to adjust not just to the specific changes themselves but also to the fact that his changes are different from those of his friends and are taking place at a different rate.
Being mindful of the milestones of childhood and adolescence will help parents to identify problems their child might have. Parents should be on the lookout as well for specific abnormal behaviors that may indicate that a child has a psychological disorder. Some of them are: repetitive actions, such as tapping, hair-pulling, and hand-washing; unreasonable fears, such as not being able to sleep unless the parents are in the same room; agitation and excessive rigidity; nervousness about meeting people; motor or verbal tics; and extremely aggressive, disruptive behavior. The degree and the intensity of these symptoms are what really matter. Occasional lapses into peculiar behavior are not cause for concern.
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