It's Nobody's Fault (7 page)

Parents have a right to a full explanation of the recommended treatment. If there is to be medication involved, you should be made aware of what the drug is supposed to do and what the side effects might be. If you ask the question, “What will happen to my child if I do nothing?” you should get a straight answer. If a child needs behavioral therapy in addition to the medicine, parents should be told what the therapy will entail and how they can help. It is in the best interests of everyone—psychiatrist, parents, and child—for parents to be directly involved in a child’s treatment, and by that I don’t just mean giving him a pill twice a day. If a child needs a special diet, his mom and dad make changes in the kitchen and supervise his meals. When he needs physical therapy, his folks make sure he follows the regimen strictly. It should be the same with behavioral therapy.

Here’s how I might put it to parents of a child in therapy. “As far as I’m concerned, you two are both co-therapists here. I can prescribe the medicine, and my psychologist colleague can work with your daughter for an hour a week, but we can’t watch her all the time. Even on school days you’re with her eight waking hours every day. You’re in charge of making sure that things are different at home. I want to give you some strategies to try and things you can do to make the therapy more effective. With your help the therapeutic process will go a lot faster.” Most parents gladly rise to the challenge and welcome the opportunity to be involved. (The role of parents is discussed further in
Chapter 4
.)

Mothers and fathers should be given an idea of how long any treatment
is expected to last and how its success or failure will be determined. What are the goals of the treatment? When and how will we know if they have been reached? If you’re told, “Oh, the therapy is going to take at least three years. We won’t really know anything until then,” you should demand a more specific description of the treatment and ask the therapist to describe some short-term goals. It is not unreasonable to ask a therapist for a progress report every three months. Some treatments
do
take years—I’m not disputing that—but three years is far too long to go without seeing substantial improvement. For a child, even six months is too long to wait. A child with a brain disorder cannot afford to waste time.

Parents who are dissatisfied with the progress that their child is making may find it necessary to find another doctor, or at least get a second opinion. If you’re uncomfortable questioning the judgment of your child’s doctor, you should know that in medicine this sort of thing is done all the time when a treatment doesn’t seem to be working. You should tell the treating psychiatrist about the second evaluation and ask him to participate by giving a summary of the child’s treatment and progress to the second physician. Sometimes the second doctor agrees with the first, but sometimes what is called for is a fresh approach.

I believe that parents should look for a psychiatrist whose reaction will define short-term goals and set limits, as in: “Listen, I expect the treatment to be finished in six months. We’re going to give your child medication, and I’ll want to see him once a week every week for four weeks. I may want him to see a psychologist for some behavioral therapy. If everything goes well, we’ll switch to an appointment once a month. At the end of six months I expect to see a marked improvement. [Here the psychiatrist will get specific about symptoms.] If at the end of six months we haven’t accomplished what we set out to do, we’ll reevaluate and possibly take another tack.”

Generally speaking, children aren’t thrilled at the prospect of going to the doctor, any doctor. Most parents prepare them well in advance of the visit. Others go the other way, relying instead on the element of surprise. Very young children faced with a visit to a child and adolescent
psychiatrist’s office may well think nothing of it. In fact, once they have been reassured that they won’t have to get an injection, they’re usually just fine about the whole thing. Older kids, who may have preconceived notions about psychiatry or who fear that they’ll be labeled “weird” or “crazy” if the word gets out to their friends, may have more problems with the first visit.

I believe that a child
should be
prepared, however casually, for his first visit to a psychiatrist. Tricking a child to get him into a doctor’s office only adds to the problem by getting the doctor and patient off to a bad start. Kids should have at least a general idea of what they’re getting into. In presenting the notion of seeing a psychiatrist to a child, I often suggest that instead of focusing on the child’s problem, parents would do well to make it a family matter.

Here’s how the conversation might go: “You know what? When one of us in this family has a problem, we all have a problem. We’re a family. That’s the good part about being a kid. If something is bothering you, we all try to find a way to make it better. If you had a rash, we would put some calamine lotion on it, right? If it still didn’t go away, we would go to see Dr. Smith, your pediatrician. If the rash
still
didn’t go away, Dr. Smith would send us to see a skin specialist. I’m your mommy, and it’s my job to do everything I can to make you feel happy.

“Your dad and I can see that you haven’t been very happy lately. You’ve been crying and upset all the time and fighting with your friends. I don’t think you’ve been having fun in school either. Miss Jones says you seem sad in class. Your dad and I want you to feel better, so we’re going to take you to see a special kind of doctor. His name is Dr. Koplewicz.”

“What
kind
of doctor?” the child will ask at this point.

“He’s a child psychiatrist,” the mother might say. “He’s the kind of doctor who takes care of children who are sad or upset about something. If kids are having trouble in school or fighting with their friends, he can help them. We’ve met Dr. Koplewicz already, and he seems very nice and smart. He told us that he’s talked to a lot of kids who feel the same way you do. We’re all going to see him together. He’s going to help you and help us so that we can get over this and you can start feeling happy again.”

“A psychiatrist!”
an older child might say. “Psychiatrists are for people who are crazy. I’m not
crazy!”

“No, of course, you’re not crazy,” the parent might say in response. “Anyone who says that people who go to psychiatrists are crazy is wrong. People sometimes say silly things. They don’t mean it. They just don’t know any better. Child psychiatrists like Dr. Koplewicz help kids who have thinking problems or feeling problems.”

I’m not saying that all conversations will go as smoothly as this one. Imaginary dialogues with imaginary children
always
go wonderfully well. Real-life kids are so unpredictable! However, it has been my experience that in this, as in all things, children take their cues from their parents. If Mom and Dad are straightforward and upbeat about a visit to a psychiatrist—and they certainly should be—children will follow their lead.

I
n the course of writing this book I had occasion to spend time with many of the parents of the children and adolescents I have treated over the last ten years. We had talked in the past, of course, but this time around our conversations were different from those that went before. I wasn’t taking a history from the parents, offering an opinion about whether or not their child was ready for sleepaway camp, or discussing the possibility of discontinuing a child’s medication. This time I asked the mothers and fathers of my patients to talk about themselves, and especially about how it feels to have a child with a no-fault brain disorder. Many of the stories that those parents told me have made their way into this book, particularly the “Parenting” sections of the many chapters in Part Three. Still, some of what I learned during those conversations calls, I believe, for a brief summing up here.

As it turned out, the most revealing question I put to all of the parents who agreed to speak to me was, “What is the worst thing about having a child with a brain disorder?” Everyone had a different answer.

“Taking her out in public and seeing people’s looks of disapproval,” one parent said.

“Having to rethink the whole idea of what having a kid is all about. Before our son came along, we were living in a dream world,” said another.

“I worry about what’s going to become of her, like will she fall in love and get married and have kids of her own? I want all of that for her,” a mother told me.

And from a frustrated father: “It’s so hard to accept that I can’t make my son happy all the time. I always thought I’d be able to do that.”

The parents I’ve just quoted are managing quite well with their kids,
all things considered, but like all moms and dads, they have their good days and their bad days. Faced with the increased demands associated with having a child with a brain disorder, they occasionally are demoralized, impatient, and just plain cranky. “I just get so tired of having to do everything the hard way,” one mother told me, somewhat sheepishly. “I see other mothers with their perfect little kids, and it’s all so easy for them. They get to relax with their kids. I don’t get to do that. Being just a good mother isn’t enough. I’ve got to be super-mom. There’s so much work involved in getting through our daily life.”

What that mother says is true, and nearly all parents of children with brain disorders are overcome, now and then, by that “How come everything is so hard for us?” feeling. Parents with problem kids
do
work harder than mothers and fathers whose children are normal. Parenting skills that are perfectly adequate for normal kids just don’t cut it with children who have brain disorders. For example, if a normal child misbehaves, parents can ignore the behavior once in a while (“picking your battles,” some parents call it), but parents of kids with brain disorders have to be so much more vigilant about their reactions, always praising positive behavior and always correcting negative behavior. If they let their guard down even for a minute, they may lose ground in the behavior modification battle. As one father put it, “With my kid there’s less of a margin for error.”

Parents of children with brain disorders have to be consistent, much more so than the average parent. The “good cop/bad cop” parenting approach that many mothers and fathers rely on is disastrous with these kids. There’s no place whatsoever for the time-honored “Wait until your father gets home” or “Let’s ask your mother and see what she says.”

It’s not easy to be “on duty” all the time. In fact, nothing about this process is easy. However, as the parents who shared their personal experiences with me made quite clear, it
can
be done. Being a good, responsible parent of a child with a brain disorder brings special challenges, certainly, but they are challenges that can be met, with style, grace, and even a sense of humor. Parents looking for answers should bear in mind the following words of advice from people who have been there.

ACKNOWLEDGE AND ACCEPT THAT THERE’S A PROBLEM. Coming to grips with the fact that a child has a brain disorder and needs psychiatric help—which may include medication—is not easy
for any parent, but it has to be done. Parents who pretend that there’s nothing wrong with their child only impede the treatment and hold their child back from a happier life. “It took us a long time—too long—to take our daughter to see a psychiatrist,” a father said. “I was the problem. My wife wanted to go, but I kept saying, ‘No, let’s wait.’ I can’t imagine what I was waiting for. I just couldn’t bring myself to admit that she was sick. I just couldn’t deal with the fact that the problem was so serious.”

One mother told me about her frustration in accepting that her son’s anxiety disorder was something she couldn’t fix herself. “I tried reasoning with him—I was
so
patient—but it was like talking to a wall. I used to have fantasies of those movies with people who act crazy until someone slaps them across the face and says, ‘Snap out of it!’ And the person would, of course. Eventually I had to accept the fact that my son’s disease wasn’t something that I could snap him out of.”

LEARN ABOUT THE DISEASE. “I was amazed at how little I knew about why kids behave the way they do,” a mother said. “I grew up in a spare-the-rod-spoil-the-child kind of family. If my brothers and sisters and I didn’t do what we were told, we got smacked, good and hard, by both of our parents. I’ll never forget—one of my sisters, who was 13 years old at the time, used to wet her bed almost every night. Whenever she did it, my father would hit her the next morning.

“I feel terrible saying this, but that was my first reaction when our little boy started giving us so much trouble. I never hit him, but I sure was tempted. Once I knew what was wrong with him, once I understood that the trouble was in his brain, I felt a lot calmer about it, and I could be reasonable. I doubt that I can ever make my family understand, but that’s okay. All that really matters is that
we get
it.”