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Making the System Work for Your Child with ADHD

Making the System Work for Your Child with ADHD

4.4 9
by Peter S. Jensen

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Even for parents who "do everything right," the road to successful management of ADHD is seldom smooth. Now leading child psychiatrist Dr. Peter Jensen guides parents over the rough patches and around the hairpin curves in this empowering, highly informative book. Readers learn the "whats," "whys," and "how-tos" of making the system work—getting their money's


Even for parents who "do everything right," the road to successful management of ADHD is seldom smooth. Now leading child psychiatrist Dr. Peter Jensen guides parents over the rough patches and around the hairpin curves in this empowering, highly informative book. Readers learn the "whats," "whys," and "how-tos" of making the system work—getting their money's worth from the healthcare system, cutting through red tape at school, and making the most of fleeting time with doctors and therapists. Dr. Jensen interweaves the combined wisdom of over 80 parents with his own insights as an expert practitioner and the father of a child with ADHD. Packed with planning tips, resources, moral support, and problem-solving strategies that get results, this is a book that savvy parents will turn to again and again.

Editorial Reviews

Doody's Review Service
Reviewer: Susan Fielkow, MD, FAAC (Ochsner Clinic Foundation)
Description: This is a reference to assist parents in advocating for the needs of their child with ADHD. The book addresses system-related issues involving schools, home, physicians and other healthcare providers. It is structured to be a resource tool to be used along with other more comprehensive books on ADHD.
Purpose: The purpose is to serve as a reference for parents and other primary caregivers of children with ADHD to help them advocate for meeting a child's needs in various settings. By better understanding the system, be it school or healthcare, the caregiver can better provide for the child's specific needs. The book does a good job of outlining the elements of systems involved and the way parents can best deal with them. Highlighted information is placed in summary squares throughout the text, relevant questions are posed and then answered, and organized examples of action plans are provided.
Audience: The target audience includes parents or primary caregivers of children with ADHD. Anyone who wishes to better understand how to advocate for the needs of children with ADHD would benefit from reading this book.
Features: The book is organized in a fairly systematic way to assist parents in advocating for their child with ADHD. Often questions are posed to spark parents' interest on an issue and then the questions are answered, helping the parent to carefully navigate through the system. Summaries and salient points are placed in highlighted squares, and action plans are often placed at the end of chapters. The book assists parents with school issues (including homework, peers, teachers, and accommodations), medical concerns (including healthcare providers, medications, and appointments), and home, family, and social concerns. It is easy to read and use as a reference
Assessment: The book provides a more comprehensive reference for parents' needs as an advocate for their children. As stated by the author, it is not meant to replace more descriptive books about ADHD, but rather to be adjunct to them, dealing more specifically with system-related issues. It is well done and I will add it to my recommended reading for parents of children with ADHD.
4 Stars! from Doody
Library Journal
Jensen (child psychiatry, Columbia Univ.) aims to help parents solve problems encountered when dealing with the professionals who work with children with Attention Deficit Hyperactivity Disorder (ADHD); he wants readers to realize that doctors, teachers, therapists, and insurance companies should work for them. Acknowledging the limited resources of some and the unwillingness of others, Jensen provides solid tips and a great deal of information based on his practice, his experience as a parent of a child with ADHD, and input from many other parents. The author's experience on both sides of the fence gives the book strength and authority, as do the extensive appendixes listing resources, organizations and books, sample letters, and an example of a school accommodation plan for children with ADHD. While Russell Barkley's Taking Charge of ADHD, Revised Edition: The Complete, Authoritative Guide for Parents helps readers understand ADHD, Jensen's book assists them in getting the best care possible. Highly recommended for all public libraries. Maryse Breton, Ann Arbor, MI Copyright 2004 Reed Business Information.

Product Details

Guilford Publications, Inc.
Publication date:
Making the System Work for Your Child Series
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Read an Excerpt

Making the System Work for Your Child with ADHD

By Peter S. Jensen

The Guilford Press

Copyright © 2004 The Guilford Press
All rights reserved.
ISBN: 978-1-57230-870-1



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.


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.


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.


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.


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.
All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
Excerpts are provided by Dial-A-Book Inc. solely for the personal use of visitors to this web site.

Meet the Author

Peter S. Jensen, MD, is Director of the Center for the Advancement of Children's Mental Health and Ruane Professor of Child Psychiatry at the Columbia University College of Physicians and Surgeons. Previously, he was Associate Director of Child and Adolescent Research at the National Institute of Mental Health (NIMH), where he was the lead NIMH investigator on a major study of the treatment of ADHD. He is the author or editor of numerous scientific articles and books; has received prestigious national awards for his research, writing, and teaching; and serves on the board of directors of Children and Adults with Attention-Deficit/Hyperactivity Disorder (CHADD), among other organizations. This book is the first in a new series edited by Dr. Jensen, "Making the System Work for Your Child."

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Making the System Work for Your Child with ADHD 4.4 out of 5 based on 0 ratings. 9 reviews.
Guest More than 1 year ago
This book was recommended to me by a friend who also has child with ADD/ADHD. She lent me her copy, but I then I bought my own because I wanted to underline it and write notes in the margins...it was fantastic! Dr. Jensen has a real practical, but wise approach to ADHD, and it is quite obvious that he 'has been there' like other parents. Most other books are up in the clouds and really don't get to the problems in the schools, with the medical system, and even with in-laws that I've had to deal with. His problem solving tips are excellent, and I got a lot of new ideas I haven't seen anywhere else. Rachel W, Austin, TX
Guest More than 1 year ago
I've read about 9 books on ADHD, and despite the hype you get on all these books from the cover, here is one that delivers. I've cleaned out my shelf, and am just keeping this one. It's very common-sense and readable, and organized the way my life is...home, school, doctor, friends and extended family, and even great advice on dealing with my boss when Kevin deals me a school crisis during MY workday. I was really inspired by the quotes and advice from other parents, and have begun to think, maybe I can get through this. Other parents' advice and hints were great, and I got some new ideas and even letters to use with my hard-nosed, no-help school system. I also used one of the letters in the back of the book to challenge my insurance company's reimbursement and it worked, more than paying for the book ten times over on this my last batch of insurance claims! The other thing that is that Dr. Jensen walks you through all the problems, and offers tips from himself and dozens of other parents, how they solved the problems, and then what they did when that didn't work. Cool! They thought of everything! 5 stars. Sondy M.
Guest More than 1 year ago
Dr. Jensen and all of you parents that contributed to this book, THANK YOU so much. This is not a pie in the sky, doctor-knows-best book that is inaccessible and full of jargon. It is funny, friendly, and practical. I cried reading several of the parents' stories, because I see you have been there, and your insights are right where I am at and what I need right now. I've bought 3 copies for my fellow soccer-mom friends as Christmas presents. On my budget, that's saying something, but this book is the first one to give me hope, and lets me see 'I can do it too!'
Guest More than 1 year ago
As a parent of a child with ADD and suffering from ADD myself, this book was different and helpful. Almost all other books I have read thus far about ADD and ADDH have been somewhat depressing and discouraging, and many so-called ADD experts paint kids with ADD as having broken brains. This book presents a much more upbeat but practical view, with lots of tips and advice from the author's own experience as a parent and doctor. Better yet, Jensen gives us many direct quotes, straight from the hearts of dozens of other parents whose words were, to put bluntly, inspiring. This approach made me believe that me and my two sons with ADD/ADDH could do great things despite ADD, and that ADHD needn't always be such a bad thing, and might have some good parts about it. Highly recommended.
Guest More than 1 year ago
I've been thru several ADD books, and this one is the best so far. I like the practical, problem-solving tips the book gives for those times when you run into road blocks. FWIW, Dr. Jenson seems to a bit more down to earth than a lot of the well-meaning advice-givers I have run across up to this point in some of the other books.
MonicaPe More than 1 year ago
Making the System Work For Your Child With ADHD has been the best book I have read on the topic and I highly recommend it for ALL teachers because they will encounter a child with ADHD sooner than later in their classroom and for ALL parents because they will very likely encounter a child with ADHD as their child's classmate, friend or neighbor. Have bought three books for my best friend who is a grandmother to a six year old boy with ADHD, the mother of the boy and her other adult daughter who is trying to help her sister parent the boy. If you are a parent, family member or friend, this book is MANDATORY reading!
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