Making the System Work for Your Child with ADHD (Making the System Work for Your Child)

297 Pages·2004·1.67 MB·English

by  Peter S. Jensen

MAKING
THE SYSTEM WORK
FOR YOUR CHILD
WITHADHD
MAKING THE SYSTEM WORK FOR YOUR CHILD
A Guilford Series
Peter S. Jensen, Series Editor
Making the System Work for Your Child with ADHD
Peter S. Jensen
Forthcoming
Making the System Work for Your Child with Autism
Bryna Siegel
MAKING
THE SYSTEM WORK
FOR YOUR CHILD
WITHADHD
Peter S. Jensen
THE GUILFORD PRESS
New York London
© 2004 The Guilford Press
A Division of Guilford Publications, Inc.
72 Spring Street, New York, NY 10012
www.guilford.com
All rights reserved
The information in this volume is not intended as a substitute for
consultation with healthcare professionals. Each individual’s health
concerns should be evaluated by a qualified professional.
No part of this book may be reproduced, translated, stored in a
retrieval system, or transmitted, in any form or by any means,
electronic, mechanical, photocopying, microfilming, recording, or
otherwise, without written permission from the Publisher.
Printed in the United States of America
This book is printed on acid-free paper.
Last digit is print number: 9 8 7 6 5 4 3 2 1
Library of Congress Cataloging-in-Publication Data
Jensen, Peter S.
Making the system work for your child with ADHD / Peter Jensen.
p. cm.
Includes index.
ISBN 1-57230-870-2 (pbk.) — ISBN 1-59385-027-1 (hardcover)
1. Attention-deficit hyperactivity disorder—Popular works.
2. Attention-deficit hyperactivity disorder—Patients—Care—Popular
works. 3. Parenting—Popular works. I. Title.
RJ506.H9J46 2004
618.92′8589—dc22
2004005761
CONTENTS
Preface vii
Part I
TAKING CHARGE OF GETTING HELP FOR YOUR CHILD
One Nowhere to Turn?: Why It’s So Hard to Get the Help 3
Your Child Deserves and What You Can Do about It
Two Principles of Action for the Expert Parent 16
Three Developing a Plan for Your Child: How to Use Your Knowledge 30
of Yourself and Your Child to Get the Best Care Available
Four What You Need to Get Started: Essential Tools and Resources 54
for the Expert Parent
Part II
WHAT TO EXPECT AND HOW TO GET
WHAT YOUR CHILD NEEDS
Five Getting the Best from the Healthcare System 85
Six Getting the Best from Your Child’s Education 131
Seven Getting the Best Out of Your Home and Family Life 167
Eight Getting the Best from All the Rest 199
Nine Looking Ahead 220
v
vi Contents
Appendices
Appendix A Sample Section 504/ADA Accommodation Plan 229
Appendix B Parent/Advocacy Organizations and Resources You Need 236
to Know About
Appendix C Funding- and Insurance-Related Resources You Need 239
to Know About
Appendix D Legal/Advocacy Resources You Need to Know About 242
Appendix E Useful Books and Resources 244
Appendix F Blank Action Plans 251
Appendix G Table of Psychiatric Disorders, Symptoms, 255
and Proven Treatments
Appendix H Sample Letters 260
Appendix I Using Behavioral Strategies to Help Your Child Improve 267
His or Her Behavior
Appendix J Ways to Become Involved 272
Index 275
About the Author 284
PREFACE
“What has made all the difference for me is learning what other parents know and
knowing that I am not alone. It’s too hard to try to do this all on your own.”
“In my opinion, the only way to make things change is to become more involved
and not just trust everything the professionals tell you.”
“Trust the voice inside that is uncomfortable facing the daily challenges of ADHD
and take it on, full force. The rewards are tremendous.”
This book is for those who want to become experts in obtaining the best possible
care for a child with attention-deficit/hyperactivity disorder (ADHD). Although I
use the term parent throughout, I hope you’ll know I’m speaking to you too, if you
are an adult who finds yourself to be the primary caregiver of, and responsible for
getting help for, a child with ADHD—whether you’re a grandparent, a foster par-
ent, an aunt, an older sibling, or anyone else.
Why Is This Book Needed?
Inmyview,ADHDisachronicproblemusuallycoveringallofachild’sgrowing-up
years(nottomentionhisorheradulthoodinmostinstances).Asaresult,you,like
your affected youngster, are going to be dealing with the consequences of his or her
ADHDforalongtime,andifyouaretosucceedoverthelonghaul,youwillneedto
become an effective advocate for your child. In effect, then, this book is an ad-
vancedcourseindealingwithyourchild’sADHD,anditisintendedtocomplement
(rather than replace) the various comprehensive handbooks for ADHD (such as
Russell Barkley’s Taking Charge of ADHD). You can use this book alongside such
othermorebasicbooks,justwhenyouarelearningmoreaboutADHDanditsman-
agement itself, or you can use it later, when you have run into the inevitable brick
walls in finding the best treatment, creating the best learning environment, and/or
constructing the most helpful overall program for your child.
As one parent put it, “It would have been a tremendous asset to us if someone
hadwrittenaresourcebookpoolingparents’suggestionsandideas,therebygivingus
vii
viii Preface
different avenues of approach to the question ‘OK, now that someone suspects our
childhasADHD,whomshouldwesee?Whatdowedofirst?’ ”Thissentimentisin
fact echoed by many parents who have a child with ADHD, because tackling all of
the challenges is so much more complex than just dispensing a pill or taking your
childtothedoctororatherapistonaregularbasis.Theharshrealitiesofmanaging
a chronic condition such as ADHD stretch most parents and families well beyond
whattheywouldhaveinitiallyanticipated,asobstacleafterobstaclearisestothwart
their attempts to “fix” the problem. I go into these inevitable obstacles in more
depthinChapter1.Fornow,thefactthattheyareequal-opportunityhurdlesmeans
thatweallneedhelp.Isay“we,”becauseIalsohaveayoungsterwithADHD,aswell
asfourotherchildren.MysonwithADHDisnowinhisyoungadultyears,soIcan
say “I’ve been there.” But as you will learn throughout this book, I am still “there”:
ThechallengesIfacehavechangedgreatlysincehewasayoungster,buttheydon’t
necessarily go away.
What Is at Stake?
I often ask experienced parents who have a youngster with ADHD, particularly
those who have become passionate advocates for improving the system for all chil-
dren with ADHD, “Looking back now, how many years did you lose while learning
how to make things work for your child?” Almost invariably, the answer is between
fourandsevenyears.Thinkofit:fourormoreyearsofyourchild’sdevelopment(and
your daily struggles) lost trying to “get it right” before you finally learn how to get
your child the best care possible!
Butdon’tdespairifyou’vebeensluggingitoutinthetrenchesforseveralyears
already and feel like you’ve been running in place (or even backward). As a parent
or caregiver of a youngster with ADHD, you can use this book at any point along
thewayintheADHDdiagnosis,treatment,andlong-termcareofyourchild.Even
if you’ve been struggling for years with your child/adolescent with ADHD, it is im-
portant to realize that it’s not too late. You and your child can benefit at any point
alongthewaybyapplyingtheconceptsandprinciplesinthisbook.Yourchildcon-
tinues to develop, and you can have an impact at any point in working to improve
the care and assistance that he or she receives in school, medical, and home set-
tings.What’satstakeatthispointandasyoulookforward?Yourchild’scurrenthap-
piness and chances for future success, your family’s tranquility, and possibly even
some increased measure of sanity for you!
Who Needs This Book?
Well, just about anyone who wants to get the most out of a child’s school,
healthcare, and other supportive resources, as well as any parent or caretaker who
wishes to learn how to make those resources become available by learning to work
Preface ix
the ropes of the system and negotiate what is needed for the child, the family, and
themselves. Perhaps your child has just been diagnosed and treatment only started
recently.Orperhapsyouhavereachedalaterpoint,whenyourealizethere’snoeasy
wayoutandtherearenomagicbullets—thatthereliefofgettingacorrectdiagnosis
is not the end but the beginning of your work on your child’s behalf. Or maybe
you’re a parent who has been out there for some time—and you’ve become com-
pletely frustrated and need some help in negotiating the system. Or perhaps you’re
simplytheparentwhowantsthebestinformationavailable:Youalreadyknowhow
tobeassertivebutappreciatehavinglotsofpracticalresourcesgatheredtogetherin
one book. Regardless of where you are on this personal pilgrimage, my goal in this
bookistohelpyoubecomesavvyinalltheareasinwhichyouneedtoadvocatefor
your child: getting your money’s worth from the insurance system; getting the most
out of overworked, underfunded educational systems; making effective use of fleet-
ing time with doctors and therapists; turning the teacher into an ally; and refitting
household systems so that a child’s ADHD doesn’t excessively affect siblings and
other family members.
Not all parents need the same amount of help to become savvy in all areas,
however. Therefore, this book offers a range of approaches for getting what your
childneedsundervaryingcircumstances,fromcollaborativeapproachestoestablish
an alliance with school or medical professionals at the start, to more assertive and
creative approaches that may be necessary when the system isn’t working as it
should.
Throughoutthisbook,Iattempttohelpyoustayintouchwiththerealitythat
resources may be limited, helping professionals may be overwhelmed, and you may
notgeteverythingthatyouwantorneed.Butbybecomingexpertsinthesystem,as
parents, we will stand the best chance of getting what our children need.
How Should I Use the Book?
Becausemygoalistohelpyoubecomeaneffectivecasemanagerforyourchildwith
ADHD,throughoutthisbookyouwillfindgeneraltipsonclear,assertive,andpro-
ductive communication with mental healthcare, education, and other providers, as
well as problem-solving tips from those expert parents who have gone through the
process of managing their child’s ADHD care. Practical tools, such as model dia-
logues, sample letters (to school boards, from lawyers, etc.), medication logs and
other recording devices, and assertiveness and other exercises, are included in this
book.
Practicality, problem solving, and putting wisdom to work are the book’s re-
peatedfocus.Ineachchapteryouwillfinddiscussionsofatleastthreeorfourchal-
lenges or things to do that you couldn’t or didn’t do before, along with tips on how
besttoovercometheseobstacles.Ifyou’rewrestlingwithanyofthefollowingques-
tions,you’llfindcarefullyconsideredanswersnotonlyfrommyprofessionalexperi-