hildren with ADHD are struggling more today at school and home than ever before. They are at odds with everyone, failing classes and falling between the cracks of Student Assistance Team meetings and 504 plans. They have few friends, and argue day after day with parents and clash with siblings. Parents complain about addictions to video games and fights over unfinished homework, going to bed and getting up. Well-meaning advice from relatives, friends and selfstyled experts often falls short. As battles are lost, parents doing their best feel guilty and powerless as they watch the child they love spiral out of control. These children defy categorization. They do not fit well into the school's definition of a good student–one who sits quietly, follows the rules, pays attention and memorizes facts to be correctly repeated on request. They are instead bursting with energy and excitement. They have new ideas and perspectives that they want to share with everyone, loudly and immediately. They can notice minute details yet miss the meaning of a facial expression or tone of voice. They are persistent, determined, and passionate about their feelings and ideas. These differences cause misunderstandings, try the patience of family and friends, and diminish children’s self-esteem. Parents begin to disagree and doubt their ability to love or discipline their son or daughter. The negatives build to an avalanche that threatens to obscure the child’s unique personality, practicality and creativity. All this occurs despite the recent publication of literally thousands of books, articles, internet sites and opinions about ADHD by psychiatrists, psychologists, healers and
entrepreneurs. There is little lasting improvement in the endless stream of guaranteed cures from traditional medicine, special diets, computer programs, PET scans and mindfulness exercises. After treatment failures, parents come to me insisting that there must be "more than ADHD.� They are correct. These children have already seen too many doctors and tried too many medications and complementary therapies. What parents need is a practical problem-solving strategy to understand the complex nature of the child with ADHD and his world. A parent-centered approach will have the best chance of success because of the special knowledge and deep commitment of mothers and fathers. The reasons for failure can always be found in one of these areas: ADHD itself, environmental stresses at home or school, or other complicating, coexisting conditions within the child. Although ADHD is common, occurring in 11 percent of children, there is no test to prove the diagnosis. This deficiency leads to confusion about both the condition and its treatment. Research has established the brainbased causes of ADHD by locating responsible genes and neurotransmitter chemicals but has not been able to generate a definite laboratory test. Uncertainty about the diagnosis leads to questions about the safety and side effects of stimulant medications, despite over 70 years of proven benefits. Without good communication between doctor, parent, child and teacher, the response to medication can be poor due to low doses, short duration of action and impatience with manageable side effects. This opens the door to questionable, alternative treatments such as vitamins, fish oil, natural supplements, neuro-feedback and aromatherapy.
At the same time, the world the child lives in is constantly in motion requiring continual adjustment and rebalancing. There are family moves, illnesses, financial and marital troubles, never-ending dynamics of divorce and blended families, sibling rivalry and aging grandparents. Alcohol and drug abuse, and domestic violence–including physical and emotional child abuse and neglect–are on the rise. The toxic stress of unmet needs in the first years of life can intensify the problems of ADHD and heighten anxiety. On the school front, curriculum changes each year make for predictable but difficult transitions in third grade, middle school and high school. Even in elementary classes, there may be multiple teachers with considerable variation in styles of teaching, discipline and willingness to work with a child who has ADHD. The characteristics of classmates also affect the child's performance. Too many school administrators seem to prefer detention or suspension to a careful evaluation and treatment plan for the learning and behavior problems due to ADHD. As children grow physically, their brain matures, altering their unique qualities of attention, impulsiveness, personality and learning differences. All children with ADHD will at some point have overlapping complicating learning and behavior conditions. They may have difficulty reading, weak organizational skills, worry and anxiety, emotional impulsivity resulting in anger and mood swings, sensitive and stubborn personalities, poor eating and sleeping habits, and nervous tics. Trying to sort out the theoretical chicken versus egg question of which condition came first is often impossible.
For the last 30 years, I have been a behavioral pediatrician, a husband and a father to six children who are (finally) growing up and leaving home. They are all good kids, but too many have had short attention spans and shorter fuses. Although their personalities and styles of learning and behavior differ sharply, my wife and I have faced challenges in academic, social and family arenas with all of them. My personal experiences and professional training led me into a university-based practice dedicated exclusively to children and adolescents with school and behavior problems. As I have listened to my children, my patients and their parents over the years, I have learned two valuable lessons:
There is always more than ADHD. “Inside” the child are learning disabilities, oppositional and mood disorders, anxiety and depression, tics, toxic stress and sleeplessness. “Outside” the child, there are family problems, weak social and emotional supports, unhelpful school systems and merciless peers. If any of these complicating conditions is not diagnosed and treated, even the best ADHD therapy will eventually fail.3 Parents and their child must assume the leadership of a team of medical, educational and behavioral advisors. Parents know their child and circumstances better than anyone. Through long and painful experience coping with their son or daughter, they have learned the hard lessons of what works and what doesn’t. Their estimation of the child’s true potential in grades and relationships will always be more accurate than that of any expert. Despite their
own misgivings, parents are in the perfect position to find and fix all the problems of ADHD and beyond.
This book is organized to help parents achieve their goals. For clarification, each chapter ends with a Parent Guide listing the key points. Section 1 explains the medical problem-solving system, describes strategies to deal with uncertainty and complexity, and provides reallife illustrations through the story of a family whose child has ADHD. Section 2 is a stand-alone chapter that covers the critical but controversial topic of stimulant medication treatment thoroughly. I would recommend these two sections to all readers. The key concept of “inside” complicating factors is presented in Section 3. Six chapters are devoted to understanding and managing the coexisting conditions of anxiety, anger, insomnia, tics, constipation, learning disabilities and autism. These chapters can be read selectively depending on the characteristics of the individual child with ADHD. The “outside” effects of adverse childhood experiences and the impact of genetic and environmental features are discussed in Section 4. These chapters should be required reading for everyone because of the future potential of current research to change the direction of diagnosis, treatment and even prevention of ADHD. Because the characteristics and management of ADHD vary according to age, Section 5 follows the course of ADHD through the lifespan in three final chapters on the preschool child, adolescent and adult. The Afterword, references and annotated resource list close the book
I always enjoy meeting new patients because of the priceless opportunity to work with children and their parents. I like the challenge of complicated problems and the chance to help families struggling with issues caused by ADHD find their path. But more than this, I know the strategies you will find in the pages ahead work. I see them working every day. After treatment when parents tell me they have a “new” child, what they really mean is they have the “right” child back, the one they always knew and loved. The ability of the child combined with the commitment of the parents can solve the complex problem of ADHD and more, and change the outcome at home and school–for the better.
Remember that the best hope for the child is the parent. 1. ADHD is always complicated. 2. Internal (child-centered) complications include learning disabilities, oppositional and mood disorder, anxiety, tics and sleep problems. 3. External (environmental) complications include family stress (violence, substance abuse, poverty), limited social or emotional support, inadequate school services and bullying. 4. Parents of children with ADHD can learn and apply the medical problem-solving system. 5. Defining the chief complaint is the first step. 6. Uncertainty is a barrier to diagnosis due to the absence of physical finding or laboratory tests for ADHD. 7. The uncertainty of ADHD diagnosis can be decreased by using a history to verify inattention, hyperactivity and impulsivity. 8. Uncertainty can be further decreased by demonstrating that the three key behaviors of ADHD fulfill four criteria: 9. They occur over a long period of time
10. They occur in more than one setting 11. They are different when compared to peers’ behavior 12. They cause impairment. 13. Impairment is defined as not reaching the child’s full potential in both grades and relationships. 14. Treatment is possible despite nagging uncertainty if progress is measured toward selected goals and side effects are avoided.
Figure 1.1. Flow Diagram for Medical Problem Solving
Figure 3.3: The Circles of Care
Figure 11.2: Outcomes Associated with ACEs
Figure 11.4. Child’s Response to Trauma: Development and Learning
1. Severe or persistent (toxic) stress caused by adverse childhood experiences (ACEs) can complicate and worsen the effect of ADHD and complicating conditions. 2. Physical, mental or emotional stress, if not buffered by a nurturing adult, interferes with normal brain development. The result may be additional physical and psychological disorders in the child with ADHD and adult disease, such as obesity, hypertension, diabetes, substance abuse and early death. 3. Toxic stress reactions are related to the basic responses of freeze, flight or fight. Children may appear detached and inattentive, anxious or aggressive. 4. The response of the child to ACEs varies according to age depending on the effect on memory, self-control and thinking. 5. Treatment of toxic stress reactions includes providing family support, preventing additional ACEs, and managing physical and emotional problems. The American Academy of Pediatrics has developed the following list of advice for parents: 1. Learn to notice and avoid “triggers.� Find out what distracts or makes your child anxious and work to lessen these things.
2. Set up and follow routines for your child so she knows what to expect. 3. Give your child a sense of control by giving simple choices and respecting her decisions. 4. Do not take your child’s behavior personally. 5. Try to stay calm. Find ways to respond to an outburst that do not make things worse. Lower your voice. Do not yell or show aggression. Do not stare or look directly at your child for too long as some may interpret it as a threat. 6. When your child insists on keeping you at a distance, stay available and responsive. 7. Stay away from discipline that uses physical punishment. For an abused child, this can worsen panic and out-of-control behaviors. 8. Let your child feel the way she feels. Teach your child words to describe her feelings. Show her acceptable ways to deal with feelings and praise her when she expresses her feelings or calms down. 9. Be patient. It may have taken years of trauma or abuse to get the child to her current state of mind. Learning to trust again is not likely to happen overnight–or any time soon. 10. Be consistent, predictable, caring, and patient. Teach your child that others can be trusted to stay with and help her.
Figure 12.1: Factors Affecting Temperament.
The confusion of conflicting and incomplete information about the cause of ADHD can be minimized by the following guidelines: 1. No shortcuts allowed. The diagnosis of ADHD requires detailed information from families and teachers, including standardized questionnaires. The ADHD symptoms of hyperactivity, inattention and impulsivity must be documented over a long period of time, occur in more than one location, be significantly different from their peers, not be explained by another disorder, and be judged to interfere with grades and relationships. 2. ADHD is a biological, brain-based developmental disorder with coexisting conditions and considerable risk for poor outcomes if not identified and treated. 3. DNA is not destiny. Family history does not have to repeat itself. Every problematic genetic tendency may be balanced by a different protective factor. Strong intelligence and supportive caretakers can cancel out the effect of neglect, abuse or emotional distress. Children with ADHD each possess a unique set of behaviors, personality, coexisting conditions, strengths and weakness that give them the opportunity to reach their best potential. 4. Environment is an undeniable influence upon behavior. Every effort should be made to create a safe, stable and nurturing world for the child with
ADHD, despite the problems their behavior often creates. Parents will need all the education and support they can obtain from their team of physician, teacher, counselor, family and friends. 5. The odds of developing ADHD can be reduced by a healthy lifestyle with good nutrition and the avoidance of alcohol, smoking and drugs– especially during pregnancy. 6. There is no single cause for ADHD. There are no simple answers for diagnosis and treatment. In every case, a parent-directed team approach to diagnose and treat ADHD and coexisting conditions will be effective. 7. There is no single treatment for ADHD. Treatment should be multimodal. Educational and behavioral modifications should be implemented before the administration of medications. The parents of the child should direct treatment and measure outcomes. 8. A trial of stimulant medication should be considered and carefully monitored when educational and behavioral treatments are not successful. 9. The use of non-standard, alternative or complementary treatment is an important decision for parents. The choice should be based not solely on personal testimonies but on solid scientific studies that also evaluate safety and side effects. A “natural” treatment is not automatically “better.” The decision for treatment should weigh the cost of commitment–time, effort
and money. The treatment should be time limited with results strictly assessed according to the specific home and school goals established by the family. 10. The impact of ADHD can be reduced when communities work together to improve health care during pregnancy and infancy, treat family mental health issues, and work to reduce addiction and poverty. Families, schools, physicians, psychologists, health professionals, government representatives and other concerned stakeholders should work together to accomplish the goal of properly diagnosing and treating ADHD and all its coexisting conditions.
fter a recent medical conference, I had dinner with the keynote speaker, a nationally known medical subspecialist. He was also an old friend from our days working together as pediatric residents at the University of Maryland Hospital. As we shared memories, he asked if I remembered a certain PICU patient we had cared for. When I was unable to recall the name, he said, “You should remember him. I know I do. He was one of the sickest patients I have ever seen–a complete ‘train wreck.’ I was overwhelmed, tired and discouraged. At that point, his chances of surviving were obviously so low that I truly believed that all our effort was just not worth it. “Although it was 2:00 in the morning when you heard my comment, you sat me down in the workroom, looked me in the eye and told me, ‘Stuart, we can do this. Our job tonight is to find everything that is wrong with this kid and try to fix it. That is our only job, and we are going to do our best to help him. If he gets better, great, but if he doesn’t, we will still have done our job. Not everything is in our hands, but some things are. Let’s get our team together and go back to work.’ “Unbelievably, he did get better. With my own eyes, I saw him walk out of the hospital holding hands with his parents. I have never forgotten that lesson and have taught it to every resident or student who is challenged by a complicated patient.” Although I could not remember the patient, I did recognize the message and the method. In fact, the idea
for this book began over 30 years ago when I discovered that this same PICU medical problem-solving system worked just as well to help parents make sense of their children with ADHD and complicating conditions. Working together, we found that the strategy of developing and directing a team of experts in medicine, teaching and counseling could get their child on the right path to improved grades and relationships. It also became clear that a course of stimulant medication should be considered only if the right combinations of educational and behavioral treatments had not moved the child closer to academic and social success. After making the diagnoses of ADHD and all the coexisting conditions, my job was to help parents determine the goals for their child at home and at school and to provide accurate information on educational, behavioral and medical treatment options. Once the problems of hyperactivity, inattention and impulsiveness improved after adjusting doses and managing side effects, the real work began. We could then tackle the remaining, now recognizable, problems of learning disabilities, emotional disorders, family problems, and other associated conditions. Coordination of the team was the primary responsibility of the family–parents and children working together. The positive changes in the child gave parents and teachers a second wind and better strategies to meet the endless day-to-day and year-toyear challenges. What motivated me to write was the opportunity to show families that failure is not an option. As in the PICU example, their efforts for their child are not wasted and will be rewarded at home and at school. The initial chapters of the book were written to explain the basics of
the system: understanding medical problem solving, managing uncertainty and complexity, setting goals, and learning how to develop and lead their own team of experts. A critical chapter reviewing the pros and cons of stimulant medication treatment and methods of parentteacher-physician monitoring logically follows. It seemed necessary then to deal with persisting complicating issues: learning disabilities, the emotional problems of anxiety and anger, and the often-neglected topics of sleep, tics and constipation. Two chapters were added to provide new information on the interaction of ADHD and adverse childhood experiences (ACEs) and environmental or genetic factors. Anne Ward, the editor of High Tide Press, requested a perspective on ADHD through the life cycle that evolved into three separate chapters describing preschool children, adolescents and adults. Although I found the chapter on autism spectrum disorder and ADHD to be the most difficult to write, the lessons I learned greatly improved my care for children with these colliding spectrums. Each chapter, including this Afterword, is drawn from my daily experiences working with children and their families. Although every patient is unique and has a special story, children with ADHD are also identical because every single one of them has both ADHD and at least one coexisting condition. The truth is that all of them will respond to their specific parent- led plan of combined educational, behavioral and medical treatments. I see this reality daily in my job as well as in my life.
My son Joshua has ADHD. He and his twin brother, Jesse, provided the final fifth and sixth chapters to our Lewis Family Adventure Series on Raising Children. They were special to us not only because of the two for one deal but also because they were our last children and always so incredibly full of life. The only quiet moment I had with them was in the empty recovery room when I held them while my wife Libby slept and the nurse had stepped out. That moment was quickly gone forever. If you were to page through our family photos, you would see me smiling in every picture I have with our twins. I can’t help smiling even now when I think of “The Babies” as the family called them for so long. I can see them as swaddled newborns sharing a clear hospital bassinette and later sitting together unsteadily but beaming in baby baseball red and blue pinstripe uniforms with matching caps. I can picture them at Christmas crying in unison with unrestrained toddler terror while they sat on Santa’s knees surrounded by brothers, sisters, dogs and elves. As they grew up, their photographs clearly show Josh’s joyful exuberance and Jesse’s quiet confidence. Almost before we could turn around, Josh’s ADHD began to cause trouble at school and at home. His problems and our fears and frustration worsened year by year despite our best efforts. Nothing worked for very long. It seemed that all our love could not save our Josh. I felt guilty of father failure– completely lost and helpless when my son needed me most. At the end of our rope in third grade, we turned in desperation to the medical problem-solving system. We set goals and recruited a doctor, teacher and counselor team. We uncovered problems with organization and written dyslexia, met with teachers and developed an SAT plan every school year. We talked with a psychologist about managing Josh’s sensitive but stubborn
personality, impulsive actions and strong emotions. When we finally added stimulant medication, things began to fall in place. As Josh grew up, he began to work with us more and more to find his way to overcome the multiple challenges of middle school, high school and college. He succeeded in graduating from Marshall University in four years with a teaching degree in science. He dedicated every summer to work with children at the Ontario Bible Camp, a church camp in Oswego, NY. There he met lovely Laura, his future wife, and together they built a strong relationship that led to marriage and now soon to their first baby. As with all my children, I am extremely proud of Josh, who is becoming a terrific teacher and a wonderful husband. I am sure he will also be awesome as a father even if his son or daughter inherits his ADHD. Josh has a lot of experience in that area. This then is a guide book to help parents with children like my Josh find their path to success at home and school by making sense of their ADHD and complicating conditions. I have meant it to be full of hope as well as reliable information and practical advice. The best hope for children is always the love and dedication of their parents. The good news is that parents will find that they are not alone in this journey. As they lead their teams, they will find caring teachers, insightful counselors and knowledgeable physicians along the way who will provide unexpected but invaluable help at just the right time. Our ultimate responsibility as parents is to help our children grow into the adults they were meant to be, people who can achieve their best in life. As in the PICU, our watchword must be: Let’s get our team together and go to work.
r. James Lewis, a Professor of Pediatrics at the Joan C. Edwards School of Medicine at Marshall University in Huntington, WV, is board certified in both Pediatrics and the subspecialty of Neurodevelopment Disabilities. He received his preclinical training at Houghton College and the State University of New York School of Medicine at Buffalo. After two years of residency in Family Medicine at the University of Maryland Hospital in Baltimore, he completed a three-year pediatric residency at the same institution. During his final year, he served as Co-Chief Resident with educational and clinical responsibilities that included supervising the ER, hospital wards and PICU. His background in family medicine stimulated his interest in children with special healthcare needs both physical and emotional, which led him to complete a one-year fellowship in Ambulatory and Community Pediatrics at the Children’s Hospital of Pittsburgh. He and his family moved to West Virginia in 1983 when he returned to the University of Maryland Hospital as a pediatric faculty member. After years in pediatric practice, he developed the School Solutions ADHD Center of Marshall University. As director since 2002, his fulltime practice has been devoted exclusively to children with school and behavior problems. He sees over 100 new patients yearly referred from other doctors for complete evaluation and subsequent follow-up care. Throughout the process, he successfully employs a parent-centered multidisciplinary team.
Dr. Lewis lectures regularly on ADHD and related problems to parents and professionals in the tri-state area of West Virginia, Kentucky, and Ohio. He has presented his research interests in ADHD and its association with autism, anxiety, parental stress, learning disabilities and adverse childhood experiences at national and state meetings of the American Academy of Pediatrics (AAP), the Pediatric Academic Society, the Learning Disability Association of America, the Society for Developmental and Behavioral Pediatrics and CHADD. He has published more than 25 scholarly journal articles, book chapters, and scientific abstracts. He has organized and led an ADHD and foster care quality improvement project sponsored by the AAP for pediatricians throughout West Virginia. He was also awarded West Virginia’s first five-year, Healthy Tomorrows grant from 2007 to 2012 to coordinate medical care, with a focus on ADHD, for homeless children. Just recently, he received two Special Recognition Awards from the AAP for his work and the inaugural Abraham Finklestein Resident Teaching Award. Dr. Lewis and his wife Libby, have six grown children including twins, all with careers in medicine or teaching. Two of the boys have ADHD with associated educational and behavioral issues. They are particularly proud of their three grandchildren and are happy to provide pictures on request.