It's Nobody's Fault (8 page)

Another mother talked about how important it was for her and her husband to do their homework about their child’s disorder. “If my husband could have found a way not to be a part of this whole thing, I think he would have. But I got him to go for family therapy, and then I brought home all kinds of literature about our son’s disease. I got him hooked. Before he knew what hit him, he became a vital part of our child’s treatment. Understanding the disease was the key.”

BE REALISTIC. Parents with children who have brain disorders don’t live in a “Leave It to Beaver” world, and the sooner they come to
terms with that fact of life, the better off everyone will be. “I tried so hard to be like everybody else,” said the mother of one of my patients. “I kept thinking that if I planned ahead enough, if I anticipated absolutely every contingency, then we could have a perfectly
normal
life. When I finally got over trying to control everything, we started having our own life. It wasn’t exactly what anybody would consider normal, but it was good and we liked it. We were a lot happier after I lightened up.”

DON’T TAKE IT PERSONALLY. Every parent carries around some emotional baggage, and it’s not always simple to set it aside when dealing with problem kids. Some parents regard their kids’ imperfections as a personal insult and react accordingly. One father who felt that way at first described his feelings to me quite candidly: “This is going to make me sound really shallow and like some kind an egomaniac, I know, but it was really hard for me to accept that there was something wrong with my kid. Image is very important to me, in my business and in the rest of my life. I really had to work hard at accepting that my kid is not me. I am not living my life through him. When I finally got that into my head, I did a much better job of helping him. I learned a lot from this.”

Most brain disorders have a genetic component, so many parents’ reactions are complicated by the fact that they themselves grew up with a disorder similar to that of their children or have a close relative with the same problem. “I had terrible social phobia when I was a kid,” a mother said. “I still do, really. So it was sheer torture to watch my daughter go through it. I felt sorry for her, and I hated myself for giving it to her. Sometimes I think I even hated her a little. Making sure that I was thinking about
her
and not myself was one of the hardest things I’ve ever had to do.”

BE PREPARED. As I say more than once in these pages, parents should be co-therapists for their child, and that means working, hard, with qualified professionals to learn parenting techniques designed to bring about the desired changes in a child’s behavior. “I feel as if I have a doctorate in child psychology,” a bemused father said to me. “My wife and I now have gotten so good at handling our son that I’m thinking of turning pro. I used to think that all you need when you deal with kids is common sense, but I was wrong. Common sense doesn’t always work with these kids. We had to memorize all kinds of new methods. Now we
know exactly what to say and how to react whenever our little boy does something he’s not supposed to do. I guess we’re not very spontaneous, but at least we’re getting on with our lives. It used to be World War III around here every day.”

KEEP THE HOME FIRES BURNING. Children’s brain disorders are rough on marriages, and it’s not difficult to see why. Anger, guilt, blame, feelings of inadequacy, recrimination—none of these is likely to strengthen and solidify a relationship between husband and wife. Strained relationships are all but inevitable as parents come to terms with a child’s disorder. Disharmony comes in as many forms as there are marriages. One of the most common sources of tension is a situation in which one parent makes the other do all the work. Here’s how one mother described her husband’s reaction to her son’s problem. “Years ago, when we first found out that Grant was quite sick—the diagnosis was depression—my husband basically checked out for a time. He’s a wonderful man and a terrific father, but he just couldn’t handle having a child with a mental illness. For three months he barely talked to Grant. He’d come home from work and stick his nose in the newspaper or a book until it was time for Grant to go to bed. I was the one out in the backyard playing catch with Grant or trying to get him to talk. My husband found Grant so difficult that he kind of withdrew. He wouldn’t engage him, or maybe he couldn’t. He said he felt as if he were walking on eggs with his own son. And it’s true: Grant did fly off the handle really easily with his father. The least little thing would set him off. Eventually we went to parent counseling for a couple of sessions and really talked things out. My husband checked back in. We’re fine now, but it was rough there for a while. I can definitely see how a marriage could just fall apart.”

The feelings of another father were more mixed. “I’d go off to work every morning feeling like a monster. There I was, abandoning my wife and my poor crazy daughter. Part of me wanted to stay home and help, but another part was glad to be out of there, away from all the sadness and stress. But then things got better. The medication really helped, and I got more involved, I stopped feeling that I was letting my family down all the time.”

Once in a while a crisis brings families together right away. “We were like a tag team,” one mother told me. “Both of us would get discouraged
now and then, but somehow it was never at the same time. We would kind of take turns. When I gave out, he was always there to take over. I quit my job for a year to look after Samantha when she was first diagnosed with pervasive developmental disorder, but my husband came home from the office whenever I needed a break. All I had to do was call. I can’t say that the house looked all that great—we were too busy caring for Saman tha to do much dusting or vacuuming—but we managed. There were plenty of times that we were unhappy, plenty of times when we cried ourselves to sleep. But we never had a fight about it. We always stuck together.”

The story that Samantha’s mother tells is unusual. Most parents
do
have arguments as a result of their child’s brain disorder. That’s why I often give a prescription for parents as well as the children. The child gets medicine. For the parents I often recommend dinner and a movie or, even better, a night in a hotel. (We call it
relationship hygiene.)
Even perfect parents need a break once in a while.

When parents find it necessary to spend a lot of time focusing on the problems of one child, the other children in the family may feel slighted. When a child has a brain disorder, it affects the entire family, and it is often difficult for parents to keep the nurturing scale in balance, tending to the needs of the children
without
problems. As complicated as it may seem, I recommend that parents set aside time to be with each of their children.

DON’T TRY TO DO IT ALONE. Some parents need help coping with guilt. Others need to talk about how hard it is to keep their tempers when their children try their patience. (“I know he can’t help himself when he behaves like a lunatic, but sometimes I want to swat him so badly my hands itch,” more than one rueful parent has said to me.) Speaking openly about a child’s condition and involving others—teachers, friends, relatives—in the process of making him well can be a big help to parents in crisis. “I really didn’t want to talk to anybody about this, but I finally broke down and told a close friend that my daughter was taking Prozac for her anxiety disorder,” one mother told me. “It turns out that she has a son who has ADHD. It was such a relief to talk to somebody who knew what I was going through.”

Parent counseling, individual therapy, and group therapy can all be helpful to parents in distress. Newsletters and support groups aimed at
parents whose children have specific brain disorders are excellent sources of both practical information and emotional solace. (See
Appendix 2
for a list of useful publications and support groups.) Not every parent I’ve spoken to feels the need to join a group—in fact, some would never dream of doing such a thing—but for those who feel they would benefit from the company of other parents who are going through similar experiences, support groups are quite wonderful.

“I always feel really great after I’ve been to one of the meetings,” one mother told me enthusiastically. “Everyone is so open about sharing information about doctors and medication, and nobody’s embarrassed. Being there always makes me feel as if I’m doing the right thing for my daughter. There are parents with kids who are worse off than mine and some with kids whose cases are more mild. All the people in that room have nearly the same life as mine and the same difficulties. We talk about our marriages. We talk about our horrible relatives and our nasty neighbors and exchange tips about getting teachers to cooperate. Knowing that I’m not alone, that someone else just like me is going through this, really means a lot to me.”

PART TWO
DNA Roulette
and the
Role of Medication

The two chapters that make up Part Two of this book explain what causes a child’s brain disorder and why medication may well be the solution to a very serious problem.

O
ver the last 20 years there has been a major breakthrough in the understanding of emotional and behavioral disorders in children and adolescents. In the past, childhood psychiatric disorders were thought to be caused by early childhood traumas or bad parenting or sometimes both. Today we recognize the vital role of the brain itself. The effects of brain chemistry on mood, emotions, and behavior are part of the standard psychiatric curriculum in medical schools and university training hospitals all around the world. We know that children don’t just develop psychiatric disorders as a result of outside stimuli. They’re born with them, or at least with a vulnerability to them. It’s a function of the brain.

Just as a baby is born with brown eyes or blood that’s type B positive, he or she comes into this world with a certain genetically determined neuroanatomy and brain chemistry. Each of these elements contributes to the way that a child develops, learns, and behaves. With luck the child’s brain will be “perfect”—sufficiently adaptable and not vulnerable to a disorder—so that he won’t be anxious, depressed, inattentive, or compulsive. When luck fails and there’s a severe imbalance in the brain, the child will experience emotional or behavioral difficulties. Contrary to what we used to think, these are not “emotional problems.” These are brain disorders with emotional and behavioral symptoms. There’s a big difference.

Children with brain disorders—attention deficit hyperactivity disorder, separation anxiety disorder, obsessive compulsive disorder, depression, and the many other disorders examined at length in the pages that follow—have these disorders largely because of the way their brains
work. The fact that the symptoms of these disorders are behavioral doesn’t change the fact that there is a neurobiological basis to them. Parents are no more to “blame” for a child’s psychiatric disorder than they are to “blame” for his epilepsy or his red hair.

The parents of the children I treat aren’t always eager to learn about brain chemistry, I know. Some, like the mother who showed up at my office with her own personal copy of
Diagnostic and Statistical Manual of Mental Disorders
, the diagnostic bible of the American Psychiatric Association, enjoy speaking the language and embrace the technicalities of their child’s disorder. Others take the tack of the impatient father whose reaction was just the opposite: “Look, Doctor, when my watch is broken, I don’t want to know why. I just want the jeweler to fix it!” Most parents are somewhere in the middle. “I really care about what’s wrong with my kid, but this brain chemistry stuff is so
complicated”
is the comment I hear most frequently, and for good reason.

The workings of the brain
are
complicated. Even so, I encourage parents of children with a brain disorder to know a little something about the chemistry of the brain—not enough to diagnose disease or prescribe medicine, naturally, but enough to understand their child’s disorder and sympathize with it. Even the most data-resistant parents will find it comforting to know that their child’s bad mood or his alarming behavior is not willful or based on whim; the child is behaving that way because of his brain. What follows is a brief look at the basics.