Making the System Work for Your Child with ADHD
By Peter S. Jensen
The Guilford Press Copyright © 2004 The Guilford Press
All rights reserved.
NOWHERE TO TURN?
Why It's So Hard to Get the Help Your Child Deserves and What You Can Do about It
"The doctor means well, but his advice just isn't practical."
"The school says it is 'not their problem' because ADHD is not a school's responsibility but a medical problem."
"My husband thinks the 'real problem' with our child is that I am a pushover and 'just not firm enough.'"
"I never would have known how much my daughter could have done on long-acting medications, because my insurance company would not pay for them."
The fact that you're reading this book probably means you've run into some of the same obstacles as these parents. Despite repeated efforts and a firm commitment to helping your youngster with ADHD, "the system" just seems to stand in your way. Maybe it's the insurance company that won't cover the latest medication even though it's the only one that really seems to help your child concentrate at school. Or it could be your local school system, which just doesn't have enough funds to give your child extra help while letting him remain in a regular classroom, where you're sure he'll thrive—if only he could be allowed extra time for tests and be offered methods to help him stay on task. Perhaps "the system" is your own family—a spouse who "doesn't believe in ADHD," as one mother reported, relatives who shun your admittedly disruptive child and therefore your entire family unit, or siblings who are falling apart from the conflict and neglect they are suffering because the kid with ADHD needs so much time from you.
Far too often, the systems in place to help children with chronic illnesses like ADHD fall short, largely because the unique problems of an individual child require costly, time-consuming attention and the number of individual kids needing such care simply exceeds the capacity of the available resources. But sometimes the system can work for your child, if you know how to push the right buttons and pull the right levers. The trouble is, by the time you've piled up what feels like a lifetime of frustration over the system's shortcomings, you may have very little sense of what's gone wrong, much less what to do about it.
Most likely, you have already read other books on the topic of ADHD, you have consulted with your child's doctor, and perhaps you even have sought the advice of a professional counselor or therapist, such as a child psychologist or psychiatrist. Almost certainly, you have had repeated discussions with your child's teachers, and you may also have sought advice from family members and friends. So, given all the effort you have put into getting your child help, why are things still so difficult?
The short answer is that the task before you is one of the toughest any parent—and person—ever faces. As a parent of a child with ADHD, I can personally attest to a lot of trial-and-error, hit-and-miss attempts to do the right thing, only to realize later that I made yet another mistake ... despite undergraduate training in psychology, four years of medical school, and extensive training in child, adolescent, and adult psychiatry! Creating a good life and crafting a promising future for a child with ADHD is incredibly complicated. Lest you've gotten so down on yourself for "failing" that you've forgotten what you're trying to accomplish, let me remind you how high the bar has been set for you: You have to convince an underfunded school system that may be understaffed with undertrained educators to learn and use new classroom and homework systems to ensure that your child has the same chance to learn as the dozens of other children under its tutelage. You have to work with a doctor pressured by managed care to treat patients faster and more cheaply in finding medication that will calm your child down and help him concentrate, without keeping him up at night or causing other intolerable side effects. You may very well have to negotiate with your insurance company with the skill of an experienced arbitrator to get coverage for therapy, medications, and even visits to the prescribing physician. You and your child's other parent have to set aside philosophical differences and marital conflicts to form a united front to help your son or daughter with ADHD. And you have to take on these time-consuming, exhausting tasks without neglecting your other kids, harming your own health, or going broke.
Not so short an answer after all, is it? Now for the long answer.
WHY MEDICAL FACTS ARE NOT ENOUGH
What has often surprised me is that while my training has definitely been helpful, it is my experiences as a parent (including my many mistakes) that have been most valuable in assisting parents to develop workable solutions for their child with ADHD. In fact, my experiences as a parent tend to keep me honest.
I am often aware that the simple, typical medical advice I dispense in the comfortable surroundings of my office isn't nearly enough to send a parent off knowing exactly what to do at home. The difference between what I can read in any medical textbook and what works in the "real world" lies in the particulars of adapting the advice to the given circumstances of that child and family, and in debugging the tools and techniques to be applied to the many problems that get in the way.
On a Personal Note ...
To show you what I mean, let me give you one of my own trial-and-error experiences. As you might expect for a child psychiatrist, I spent no small amount of time in graduate and postgraduate training learning how to apply behavior therapy, a special form of treatment that relies on so-called rewards and consequences—point systems and the like—to help a child with behavioral problems such as ADHD, oppositionality, and aggression. Just in time, too, since my own son (and his parents) was dealing with ADHD-related behavior problems. So being now well trained in these methods, I began to put them to work and was getting some early, promising changes in my son's behavior. But things hit a snag after a few months, when the point program I had put into place seemed to be backfiring. To me this was a mystery not satisfactorily addressed during my training. Fortunately, my son was there to offer an explanation: "Dad, when you give me a 'consequence' and 'behavior therapy' me, it only makes me want to be badder!"
What now? Should I abandon the approach that seemed to be backfiring? Or was there some way I could modify it? Or perhaps try a few more father–son heart-to-heart talks? Turn the problem over to his mother? Or was a medication change called for? Well, in this case, discretion was the better part of valor, and I backed off. Instead I worked on strengthening the father–son relationship and on my own emotional responses to his behavior problems. I'll fill in the details in Chapter 7 of this book, where you'll find ideas for debugging various other treatment and parenting situations. My point right now is that for a condition such as ADHD, medical facts, treatments, and techniques are rarely complete solutions in and of themselves. Most often, they are only part of a long-range, big-picture strategy that must be modified, adapted, and changed in response to the daily–weekly–monthly issues and obstacles that interfere with the straight-line movement toward a goal.
Think of yourself as the skipper of a sailing vessel. At the beginning of a voyage, your craft should at minimum be outfitted with sails, a rudder, a compass and map, a radio, a knowledgeable skipper, other crew members, and adequate provisions. Even with all of these ingredients on board, and despite the fact that you, the skipper, charted an initially appropriate course at the outset, any significant change in weather is likely to dictate a change in plans, not just to adapt to the prevailing winds and adjust course, but even to make more drastic changes, such as weighing anchor at a temporary safe harbor, returning to port, or radioing the Coast Guard for help.
On your journey to getting your child the best possible care for ADHD, you may run into similar snags. You may devise a good school program for your child, but what if the teacher doesn't want to "play along"? What if the doctor doesn't seem to be up on the latest medication approaches? Or your spouse thinks the "real problem" is that you are not "firm enough"? Or the behavior therapy and star chart systems are too complicated and don't work for your family?
You won't find any solutions to these dilemmas in the medical textbooks. Most often, they are found in the accumulated wisdom of parents who have acquired that knowledge, often through the same trial-and-error process that I have had to go through. So this book is not only written by a physician but, more important, it is also infused with the wisdom of the many parents whose experiences have shaped the advice and information in this book—parents who, like you, have spent lots of time in the trenches trying to make it work in the best way possible for themselves, their child, and their unique life circumstances.
REMEMBER, YOU'RE TRYING TO MANAGE A CHRONIC ILLNESS
To fill in the long answer to the question, "Why haven't things gotten a lot better for our child with ADHD and our family?", you have to keep in mind that you're dealing with a chronic illness and all its challenges. Many parents forget, because ADHD is classified as a psychiatric disorder rather than as a medical illness, that it's just as difficult to handle as, say, asthma or diabetes. Even with a relatively treatable condition such as asthma, in addition to carefully monitoring your child's medications, you must ensure that baby sitters, teachers, and other relatives know what to do if your child has an attack and you are not there. Now think about the kinds of steps you must take to prevent your child's exposure to potential triggers that can set off an attack, such as house dust, pollens, or pets. To make matters more complex, think about having to leave work and cancel other plans to pick up your child at school and take him or her to the emergency room for assistance during an acute attack.
With either asthma or diabetes, how about the challenges of sending your child off to camp or even only to stay overnight with friends? What other special arrangements will you have to make to make sure it works out OK? And how many times, despite your best efforts, will these steps still not be enough to prevent problems? What special dietary guidelines will your child have to follow? What do you do if he doesn't like these restrictions or "just wants to be like other kids"? What do you do if your child refuses medication?
As if these problems weren't enough, consider the additional burdens you experience when you must face all the assorted red tape machines in our current world, such as the school that says your kid doesn't need special resources, or the insurance company that says your child's ADHD is not covered or that your child cannot see the specialist recommended by your child's primary doctor.
You'd feel a lot of sympathy and compassion for a family dealing with a child's asthma or diabetes. So why not feel a little compassion for yourself and your family's plight? The first step toward understanding why things aren't as good as you believe they should be is to remind yourself that you're up against a ream of tough challenges.
THE DOUBLE WHAMMY OF ADHD: A CHRONIC CHILDHOOD CONDITION WITH EXTRA CHALLENGES—AND HOW THIS BOOK CAN HELP
Like asthma and diabetes, ADHD is a long-term problem requiring a long-term, big-picture strategy if you are to succeed in optimizing your child's treatment program—and life! But it raises some additional problems that chronic medical illnesses often do not. Below I list some of the big-picture issues that we as parents must grapple with. Despite their obvious importance, these are the things I was not taught in medical school or during specialty training and that you need to be aware of, so you can anticipate the problems they may cause. Turn to the chapters mentioned for help in these particular areas.
ADHD medicines, while effective, are far from perfect. The best established, most tested, and most effective medications are the "stimulant" medications involving agents such as various forms of methylphenidate (Ritalin, Concerta, Metadate, Metadate CD, Ritalin LA, Focalin) or amphetamine compounds (Adderall, Adderall XR). Quite clearly, these agents have side effects that can affect the child's appetite, sleep habits, and mood.
Other problems with the current medication treatments are that because they are controlled substances (with abuse potential), they usually require the doctor to write (and the parent to get) a new prescription each month. While new medications have been developed (such as Strattera) that are not controlled substances, they may not necessarily work for a given child, and stimulant medications are still often needed. More on these issues in Chapter 5.
Medication treatments (like ADHD itself) are highly stigmatized. Consider the fact that the current public perception as portrayed in the media is one of shock: "You're drugging your child?!" The rational response, of course, is this one from a wise parent: "Imagine your child has diabetes: Would you refuse to give him insulin? ADHD is a real disease, it is genetic, and the child needs help." So why don't the media and the general public say this to parents whose children have asthma? Or epilepsy? My own feeling is that it is because the general public perception is that ADHD is not a "real problem," but that it is caused by lax parents or overcrowded classrooms. Regardless of the source of stigma, it makes the use of the medications an ongoing source of anxiety and sometimes even guilt for the parents, and something that the child may be concerned about. It also puts parents and others into difficult situations, where we must make special arrangements to ensure the child's privacy and our own, ensure others' comfort or competence in administering the medication in the parent's absence. You'll find help in advocating for your child and yourself in every chapter that follows.
The behavior therapy is very complicated, hard to apply, and hard to keep up. This is one of the challenges that many parents and perhaps most teachers have trouble with. It takes a lot of work to mount a full program at home and school, and without a lot of ongoing support and encouragement, it may fall by the wayside or get used only sporadically, both certain ways to limit its effectiveness. What if the teacher doesn't really want to implement the program or feels she doesn't have time? What if you and your spouse disagree on its implementation? What if you can't keep track of all the charts and details? What if you have misgivings because your child seems to be demanding a bribe from you for what should be expected and expectable behavior? These issues are addressed in Chapters 6 and 7.
You have difficulty communicating with the doctor. Go figure! Actually, if the truth be known, this is a big and increasing problem, because most doctors nowadays have not been well trained to communicate with the patients, parents, and families. Yes, the doctor is busy, and yes, he is in a hurry, because he's paid to hurry, and in many instances, if he doesn't, it'll come out of his family time that evening. The average pediatric visit is now about thirteen minutes across the country, and managed care forces are trying to get it down below ten minutes. So it's a complicated problem, and most certainly, only a tiny part of it is your difficulty communicating with the doctor. But there are in fact things you can do to enhance the two-way communication with the doctor and maximize the chances of your being understood and having a productive two-way exchange. More on that in Chapter 5.
Insurance companies don't want to pay for ADHD evaluation and treatments. Unlike other medical illnesses, conditions like ADHD are often not fully or fairly reimbursed. Your company may not reimburse your pediatrician or family doctor to treat your child's ADHD, meaning the doctor has to take time out of other areas that she can bill for, simply carve it out of her hide, or even "make up" or use other billing codes to disguise to the company that she is treating ADHD. Many companies will pay only one-half of the costs for an ADHD or mental health specialists' visit, set lower limits on the total number of visits you can have per year, or require you to use one of their "preferred providers," who may or may not be qualified to evaluate and treat the condition. And one of the other dirty little secrets that often doesn't get enough discussion is that even if the company says it will cover a certain proportion of the costs, you end up being asked to pay much more because the doctor's fee was above the company's allowable limit. If the doctor is reimbursed at about $24 per hour but bills at the "going rate" of $50 for the same time period, guess who will pay the difference? What you can do about such problems is discussed in Chapter 5. (Continues...)
Excerpted from Making the System Work for Your Child with ADHD by Peter S. Jensen. Copyright © 2004 The Guilford Press. Excerpted by permission of The Guilford Press.
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