Not What I Expected: Help and Hope for Parents of Atypical Children

by Rita Eichenstein Ph.D., Daniel J. Siegel M.D. Narrated by Rita Eichenstein Ph.D.

Overview

A pediatric neuropsychologist presents strategies to help parents of specialneeds children navigate the emotional challenges they face
As diagnosis rates continue to rise for autism, ADHD, learning disabilities, and other developmental differences, parents face a maze of medical, psychological, and educational choices-and a great deal of emotional stress. With compassion,
clarity, and an emphasis on practical solutions, Dr. Rita Eichenstein walks readers through the five stages of acceptance and helps readers understand their own emotional experience, so that they can embrace their child with acceptance, compassion, and joy.

Editorial Reviews

Publishers Weekly

★ 02/16/2015
Though parenting any child can be demanding, pediatric neuropsychologist Eichenstein understands that particular challenges face the parents of “atypical” children, identified in this helpful manual as those who have “developmental, psychological, or learning disorders” or exhibit problematic behavior. She explains the neurobiology behind the feelings commonly experienced by such parents, including loss, denial, anger, bargaining, and depression, illustrated with relatable stories of the families with whom she’s worked. Eichenstein strongly counsels readers to trust the experts when it comes to diagnoses, remediation, and treatment. For her part, she offers therapeutic tools derived from cognitive psychology and her own long practice. She also addresses a range of pediatric disorders, including ADHD, autism, intellectual disability, and OCD. Her tone throughout maintains the “patient, positive, and optimistic outlook” that she wants to help parents cultivate. Indeed, any parent might benefit from the techniques outlined here. Sage and consistently reassuring, Eichenstein’s manual is a self-help book of the best kind, a road map for an emotionally fraught journey that illustrates how parenting itself can become an avenue for personal growth. Agent: Stephanie Tade, Stephanie Tade Agency. (Apr.)

From the Publisher

"Though parenting any child can be demanding, pediatric neuropsychologist Eichenstein understands that particular challenges face the parents of “atypical” children, identified in this helpful manual as those who have “developmental, psychological, or learning disorders” or exhibit problematic behavior. She explains the neurobiology behind the feelings commonly experienced by such parents, including loss, denial, anger, bargaining, and depression, illustrated with relatable stories of the families with whom she’s worked. Eichenstein strongly counsels readers to trust the experts when it comes to diagnoses, remediation, and treatment. For her part, she offers therapeutic tools derived from cognitive psychology and her own long practice. She also addresses a range of pediatric disorders, including ADHD, autism, intellectual disability, and OCD. Her tone throughout maintains the “patient, positive, and optimistic outlook” that she wants to help parents cultivate. Indeed, any parent might benefit from the techniques outlined here. Sage and consistently reassuring, Eichenstein’s manual is a self-help book of the best kind, a road map for an emotionally fraught journey that illustrates how parenting itself can become an avenue for personal growth."
—Publishers Weekly, starred review


"A superb book. Chock full of arresting insights as well as warmth and wisdom."
—Edward Hallowell, M.D., author of The Childhood Roots of Adult Happiness

“Full of relatable stories and accessible grounding science, Not What I Expected offers parents validation, empathy, and practical tools.  A deeply personal read, readers may feel as if they're sitting with Dr. Eichenstein, who is all at once understanding them, challenging them, and leading them to acceptance and empowerment in their roles as parents.”
—Dr. Tina Payne Bryson, co-author of the NY Times bestselling books The Whole-Brain Child and No-Drama Discipline

“At last, a book that speaks directly to parents of children who are atypical, as well as to their teachers. Easily digestible and offering insight, support, warmth, and a touch of humor, Not What I Expected will enhance your parenting toolbox and enrich your parenting life.”
—Betsy Brown Braun, MA, Child Development and Behavior Specialist, and bestselling author of Just Tell Me What to Say and You’re Not the Boss of Me

“A gem of a book. Dr. Rita Eichenstein has written with remarkable insight and compassion about the rarely focused on problems of the parents and family members of learning disabled or atypical children. A must-read for practitioners as well as parents.”
—Marion Solomon, Ph.D., author of Lean On Me and The Wonder Of We In A Culture Of Me

“With an enormous amount of experience, and mastery of the atypical brain, Dr. Eichenstein provides a road map for understanding and thriving alongside your atypical child. Not What I Expected is a must-have for any parent who has an atypical child and/or a professional who works with special needs families.”
—Dr. Charles Sophy, Psychiatrist and Medical Director for the County of Los Angeles Department of Children and Family Services

“Clear, practical and filled with hope, the ideas and practices in this book offer a science-based common sense approach that any parent or practitioner working with an atypical child will be benefit from. What better gift can we give these children!"
—Elisha Goldstein, PhD, author of Uncovering Happiness: Overcoming depression with Mindfulness and Self-Compassion

“Where other resources are content to focus on a child's condition, Not What I Expected takes the critical next step in guiding parents through these difficult times.  And it does this brilliantly, combining clinical rigor with a deep empathy for every member of the family and each one's special challenges.  The result is a book that is an indispensable partner for parenting the atypical child and helping families live full, loving lives together.”
—Michelle Miller, M.D., Pediatric Cardiologist, Associate Professor of Medicine, Florida State University School of Medicine

“An excellent guide that off ers a well-rounded approach and hold s a treasury of great information.”
—Lance Steinberg, MD, assistant clinical professor of UCLA (Geff en) NPI and pediatric/adolescent psychopharmacologist
 
“This is a wonderful, well-written book that helps parents of atypical children deal with the wide range of emotions such a parenting journey brings. Ultimately, the book guides parents toward greater self-awareness, mindfulness, and compassion for self and their unique child.”
—Lidia Zylowska, MD, psychiatrist, cofounder of the UCLA Mindful Awareness Research Center, and author of Th e Mindfulness Prescription for Adult ADHD
 
“This is the go-to book for all who are raising atypical children. The genius of the book lies in its relatable vignettes struck through with unique insight and incomparable warmth. Dr. Eichenstein’s experience-based understanding and empathic lens off er all of us parents hope!”
—Jan Goldstein, bestselling author and award-winning educator

“I urge any parent who is struggling with an atypical child to pick up Not What I Expected. You’ll be fortified to savor the rewards, and sustained to withstand the challenges, in dealing with your surprising,unexpected child.”
—Zoë Kessler, B.A., B.Ed., author of ADHD According to Zoë: The Real Deal on Relationships, Finding Your Focus & Finding Your Keys

“There's a lot of useful information here and a clear intention to acknowledge parents' struggles… compassionate advice for parents of atypical children.”
– Kirkus Reviews

Kirkus Reviews

2015-01-07
As a pediatric neuropsychologist, Eichenstein tries to answer all of the questions parents ask when their children are diagnosed with dyslexia, autism spectrum disorder, ADHD, OCD and other brain differences that affect learning and development.The questions include: Is this a lifelong disorder? Will she get better? What interventions should we try? In addition, the author attempts to answer some of the questions they don't ask: How could this be true? Is this my fault? Am I a bad parent? Drawing on the emotional stages of grief described by Elizabeth Kübler-Ross—denial, anger, bargaining, depression and acceptance—Eichenstein makes the case that parents of atypical children often go through a similar process, the "five stages of acceptance," when facing their children's diagnoses. In occasionally repetitive chapters, the author addresses each phase and provides definitions of various disorders, as well as a sprinkling of composite case studies. There's a lot of useful information here and a clear intention to acknowledge parents' struggles, but it often reads more like a clinical—and sometimes-critical—assessment of the parents. For instance, Eichenstein dismisses parental attempts to search for alternatives to conventional advice as evidence that they are in a denial or bargaining phase. To those who want to research the diagnoses themselves, she writes, "[m]ost people do not have the time…and even if they did, they would not understand what they were reading." Leave it to the professionals, she seems to be saying, a message that may put off many readers. The author's suggested remedies include a menu of self-help therapies like meditation, self-compassion and cognitive reframing. The author provides support, with a side of scolding, for parents facing a child's diagnosis with a neuropsychological disorder. Clinical distancing undercuts Eichenstein's otherwise compassionate advice for parents of atypical children.

Product Details

BN ID:	2940175462358
Publisher:	Recorded Books, LLC
Publication date:	09/13/2022
Edition description:	Unabridged

Read an Excerpt

FOREWORD

The journey from infancy to adulthood is both promising and perilous—a path best navigated with the informed and loving support of parents and other caregivers along the way. As such an important figure in your child’s growth, how can you best be informed and prepared to optimize the support and guidance you give? And when things don’t go as planned, when a child has an unanticipated difference in how they think, feel, or behave—when they are “not typical”—how can you be as strong and knowledgeable as possible in order to offer the best support you can? When things get tough, how can you remain a wellspring of love for your child? Our own resistance, confusion, and disappointment, and sometimes our embarrassment and shame when we compare our family to the experiences of others, can create stress and may distance any of us, at least at first, from being present for our child in the most supportive ways we can.

The term “atypical child” is now commonly used to describe individuals who have some features that make their particular patterns of growth; ways of thinking, perceiving, and feeling; and ways of behaving and interacting with others not what we usually expect. Whether this atypical way of being stems from a difference in the body or in the brain’s structure and functioning, the difference is not the result of anything a parent has intentionally done. Yet often we can feel guilty and responsible for these differences. Parental care and concern are deep, innate feelings that can sometimes become overwhelming, restricting our thinking and making our mood somber and our optimism dimmed. Learning to understand your own emotions can help free you from these common yet unnecessary internal reactions.

In this magnificent handbook for learning to become the best source of support for an atypical child, Rita Eichenstein, PhD, serves as an inspiring guide. This book will walk you step by step through the inner and outer challenges of this journey. As a clinical neuropsychologist with extensive experience and knowledge, Dr. Eichenstein supports you not only with her expertise with atypically developing children and adolescents, but also with her emotionally supportive strategies. If you’ve just found out about the unique challenges for your child’s development, this is a powerful guide to help you take on this new information. And if you’ve been living for a while with knowledge of your child’s atypical development, this book will also be of great help in guiding you through the long-term issues you will face.

Not What I Expected itself is wonderfully not what you may typically expect from a book on this topic: Instead of focusing exclusively on your child’s experience and needs, the approach explores the scientifically established view that the best way to support your child’s development is to encourage and support your inner understanding. By paying attention to your own feelings and reactions, you can catalyze the transition from first sensing that something is different and seeking professional help to adjusting to this new knowledge and then learning to move from the common experiences of denial, anger, sadness, and grief toward a sense of acceptance, mental clarity, and empowerment.

Take in the wisdom and support Not What I Expected provides so that you and your child can optimize your relationship and flourish, both together and as individuals living your best possible lives.

—Daniel J. Siegel, MD Executive director of the Mindsight Institute Clinical professor at the UCLA School of Medicine Author of Brainstorm and The Developing Mind and coauthor of Parenting from the Inside Out, The Whole-Brain Child, and No Drama Discipline

INTRODUCTION

Welcome to a book about parenting that does not focus on your child. Instead, it focuses on the most important force behind your child’s well-being: you, the parent. I wrote this book to help you learn how to cope with your feelings about parenting a child who is different from what you expected—what I term as an atypical child.

What does atypical mean? It’s a term that encompasses children who do not conform to the usual expectations, whether because of a learning disorder, behavioral or psychological issues, medical problem, or another condition. Atypical also refers to kids who do not meet criteria for a specific diagnostic category, or who have not yet been diagnosed. They might be quirky, delayed, difficult, or just unusual. They might be highly gifted in one area but delayed in others. Their suffering, and the suffering of their parents, does not get a label. All of these children’s struggles generate intense feelings in their parents—feelings like bewilderment, confusion, anxiety, and fear.

I meet these parents when they come to me to get their children tested. As a neuropsychologist, I’m trained to conduct assessments of a child’s brain-behavior connections. Every day, worried parents ask me, “What am I doing wrong? What am I supposed to do? Please help me understand my child better.”

What they don’t ask, but what I’ve discovered that many are thinking, is: Am I a bad person? What’s wrong with me? I don’t know how to handle my feelings about my child. I feel crazy because no one believes me when I say something’s wrong with my kid. Or more commonly, My child is driving me crazy and I feel like a terrible parent, but it’s my feelings that are the hardest part, not my child. Some parents have fears they don’t dare verbalize: Am I causing this? Was it something I ate during pregnancy? And many have anxieties they try to suppress, but which bubble up every night in the wee hours: What am I supposed to do with my feelings? Am I entitled to my feelings? Isn’t it supposed to be about my child, who is clearly suffering?

This book is designed to help parents of atypical children understand what they are feeling and learn how to manage their emotions. The difficult feelings involved in parenting special children are normal responses that evolve in predictable phases. Many of parents’ most painful or shameful feelings are innate, brain-based reactions to stressful or traumatic situations. There are techniques you can use to manage the emotional phases you will pass through when coming to terms with raising your atypical child. By learning how to handle these difficult but common emotional and cognitive states, you’ll be able to maximize your ability to parent your child wholeheartedly. When parents understand and have control over a seemingly uncontrollable situation, they become empowered and their confidence grows.

Raising an atypical child requires atypical parenting. It involves an ongoing process of self-questioning and decision making that can overwhelm even the most committed parents. The responsibility for this young life is in your hands, yet you may often feel helpless and ill-equipped to track down all the options and juggle the demands of doctors, teachers, therapists, and social workers, not to mention family members. In addition to these obvious stressors, there are deeper issues. Having an atypical child will trigger emotions that are hard-wired in all of us—denial, fear, bargaining with fate, isolation, and depression—along with hope, optimism, and joy.

As a neuropsychologist who has worked with thousands of families, I believe that the secret crisis of atypical children is the crisis of their parents. Parents, both as individuals and as couples, often struggle to keep their lives together while helping their children. Mothers in particular are at a higher risk of depression than the average mom. Divorce is rampant among couples with special-needs or difficult children. Everyone knows that raising atypical kids takes a heavy toll on parents, but until recently few have recognized how much the parents’ mental health impacts their children’s well-being. Historically, dealing with parents has not been a focus of pediatric medicine. Parents’ emotions are usually ignored, sometimes even when a life-altering diagnosis is delivered. As one parent noted, “The doctors gave me a diagnosis and a brochure and sent me on my way. It took me a long time to handle the impact of the information, let alone to be able to be helpful to my child.”1

A growing body of research now confirms that parents’ moods can affect the way they care for their children and how those children fare.2 Yet health providers have not acted on the news.

Children’s advocate and author Dr. Perri Klass wrote, “As a pediatrician, I tend to focus on the child, of course. Asking mental health questions of the parent can sometimes feel intrusive or invasive.”3 The child’s welfare is naturally a front and center concern, but who ensures that this child is nurtured and protected? Who needs to be consistently upbeat and encouraging? It’s usually the parent. And what about that parent? How is he or she coping with this child and these challenges?

How are you? How are you holding up? Where is the road map to help you navigate your own journey?

Parents Are Not Robots

I decided to write Not What I Expected after many years of working with both children and parents in psychotherapy, doing neuropsychological assessments and helping parents understand their children. These latter sessions would often run over two hours as we pored over the test results, discussed my impressions, and determined how the overall profile would impact their child and what they could do to help. After these long meetings, I would advise the parents to go home, relax, read over the report again, and take some time to digest the information. I would promise to call in a few days or weeks to see how the family was doing.

But many parents did not go home and proceed as planned. Instead, they fell into a state of paralysis and denial and delayed acting on the information. When I called to check in, they often seemed dazed, upset, or confused. How can they be confused, I used to wonder, when we spent so much time reviewing everything?

I came to realize a very important truth that all clinicians need to understand: Parents are not robots who can automatically deliver a menu of services to their child. They are human, with needs of their own. And when it comes to discussing their child’s diagnosis, something in their brain shuts down, making them unable to process the distressing information. As I continued to work with parents over many years, I saw that the different emotional states they passed through deeply impacted how they related to their children, the treatment decisions they made, and how their children fared.

I wanted to learn how to help these parents manage their feelings, so I looked high and low for information on the topic—and found nothing. I was astonished that a subject so critical to the well-being of special children was simply absent. No books, no websites, no magazines devoted exclusively to the complicated and profound emotional challenges that all parents of atypical kids face. So I set about writing such a book myself.

Why Understanding Your Emotions Makes You a Better Parent

Good parents take care of their own needs as well as those of their children. They have worked through their emotional minefields and therefore have a better array of responses for their family. The fact is, your emotional well-being is crucial to your child’s future. Understanding your emotions gives you a measure of control over yourself and the daunting situations you encounter. It helps you relate positively to your child and your family. Your emotions also impact your decision making, and for parents of atypical kids, important decisions crop up regularly. Your mental state sets the tone for healthy (or unhealthy) parenting and affects your child’s ability to form loving attachments. As a parent, you have a serious responsibility to maintain your own emotional inner balance. The emotional impact that you will have on your child is directly related to how well you understand and process your own feelings and reactions. Only then can you mindfully tune your parenting antenna outward in a controlled and reflective manner.

Children, even infants, are exquisitely sensitive to their parents’ moods and reactions. Your words can’t disguise your true feelings—if you tell your child, “I’m so happy to see you today, honey!” but don’t mean it, your child will know. And most children will assume that they are the cause of your stress or unhappiness. While it’s true that atypical children create more stressful conditions for parents, that doesn’t mean your emotions must be permanently pushed out of whack. We all have the capacity to intentionally improve our emotional balance, but first we must understand our feelings, know where they are coming from, and learn what to do with them.

This book is intended not only for parents of kids with developmental, psychological, or learning disorders but also for any parent who has children that seem to challenge the typical parenting parameters. Whatever your child’s condition, in order to survive the labyrinth of parenting challenges and decisions that lie ahead, you will need to understand what you are going through emotionally and acquire the tools to deal with those emotions.

Emotional Phases You Can Expect

When a child is diagnosed with any type of condition, or even before a diagnosis, parents’ emotions surge into overdrive. While all parents are continually battling fear and anxiety about the well-being of their child, parents of atypical children will go through a series of neurologically based (“hardwired”) emotional reactions before their psychological responses and connection to their child becomes stabilized. There are at least five feeling states that parents often experience:

Some parents experience all of these feeling states; others go directly to one feeling state and get stuck there. The emotional phases are sometimes sequential; in other families the parents shift in and out of different phases at different times. The process is not logical, and the phases can feel turbulent and chaotic even though the range of responses is predictable. This emotional journey, and how you can eventually pass through it to reach a place of mindful equanimity and stability, is what I will explain and illustrate in this book. I use a brain-based model to demonstrate what goes on in the minds and psyches of parents as they process information about their child.

In the opening chapter, you’ll learn how parents’ expectation of raising a perfect child is shattered when their son or daughter is diagnosed or their development or personality disrupts general expectations. We’ll look at how a parent’s mental health and self-esteem is affected when a child is found to be atypical. In subsequent chapters, you’ll learn about the five major phases you can expect to pass though as you come to terms with your real child. As I guide you through the ways you may feel and behave during a particular phase, I’ll share related cases from my client files (they are all composites—my clients’ confidentiality is sacred). I’ll also offer techniques for focusing, coping, and calming yourself, so that you will be able to move forward with compassion and energy.

Throughout this book you will read vignettes about children with a variety of diagnoses. Some of these are found in the DSM-5 (Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition), others are in the ICD-9 (International Classification of Diseases, NinthRevision), and other diagnoses, such as sensory processing disorder and auditory processing disorder, and nonverbal learning disorder (NVLD) do not fall within the realm of psychology, psychiatry, or neuropsychology. They are treated by other health professionals, such as occupational therapists, audiologists, and speech and language therapists. The professional world acknowledges that these conditions or clusters of symptoms that seem to look like a disorder exist, but there is disagreement about what to call them. And in some cases, there is no exact treatment protocol that is universally recognized as the “right” treatment. And in some cases, children are just quirky or nondiagnosed.

The insights and suggestions in this book are based on my own clinical experience as well as the work of experts in the fields of emotional development, parenting, neuropsychology, and neurobiology, including Daniel J. Siegel, Jaak Panksepp, Pat Ogden, Martin Seligman, Elisha Goldstein, Jon Kabat-Zinn, Bessel A. van der Kolk, Kristin Neff, Richard Davidson, and Linda Graham, among many others. Their research reveals how much we all have in common: our imperfections and frailties, our ability to adapt, our fears, our resilience, our bravery. While your atypical child may have come as a huge surprise to you, I will bet that in the end, the biggest revelation will be how well you rise to the occasion. Maybe sputtering and flailing around a bit—but you will rise! And you’ll carry your child with you. As you go through this essential process of learning about yourself, I hope you will consider me your companion, cheerleader, and confidante.

—Rita Eichenstein, PhD Los Angeles, 2015

CHAPTER ONE

What We Expect When We’re Expecting

Even before I got pregnant I had an image of what my child would be like. She—it was always a she!—would be calm and sensitive, like me. Outgoing but also studious and creative—which are also traits that I have. I’m ashamed to admit all of this now. But when we found out that our son (!) has a learning disability, the diagnosis, combined with his wild, rambunctious behavior, threw me into a deep depression. It was like I had lost something that I never really had to begin with.

—Emily, parent of an 8-year-old with ADHD and dyslexia*

Most of us conjure a distinct image of our future child when we contemplate parenthood. We not only want our child to be smart, good-looking, confident, happy, talented, and charming, we expect those things, and much more, because parents-to-be can’t help but imagine the best of all possible outcomes. If we are artistically inclined, we might imagine finger painting with our child or taking her to the museum. If we are athletic, we envision playing catch on the lawn or shooting hoops at the park. Even if we had no specific daydreams about our baby before he or she arrived, the fantasy may have materialized during the infant or toddler years—the vision of a precocious child picking out an original tune on the piano or setting up a wildly successful lemonade stand. Such imaginary parent-child scenarios are perfectly natural, because it’s part of our genetically programmed DNA to pass down aspects of ourselves and our culture to the next generation. We are predisposed to want to share our interests and strengths with our children.

In addition, there is plenty of societal pressure to produce not an average child, but an exceptional one. Keeping up with the Joneses’ baby requires more than just comparing how fast our child is growing and how soon she learns to sit up, crawl, walk, and talk. Today’s moms and dads often feel compelled to try to teach their baby to read before she’s three (never mind how unlikely and unnecessary that is). Other parents buy apps for baby sign language, toddler puzzles and quizzes, preschool reading and writing games, and more. With all this focus on early achievement, how can expectant parents not conjure an ideal child? Anything less would be a child who is sadly unable to compete in today’s precarious economy.

Cultural expectations greatly contribute to how we form the image of our ideal child, but so do personal expectations: a beautiful little girl who will grow up to attend Northwestern and become a doctor like her mom . . . a sociable little boy who has the makings of a successful business leader like his uncle Joe. Spoken or not, acknowledged or subconscious, we all have dreams of the future child, teen, and adult that our baby will grow up to be.

While the rational part of our brain insists that we will be happy with any child as long as he or she is healthy, the emotional part—our heart and our imagination—tells us something else. It’s no wonder, then, that a small riot lets loose in a corner of our brain when these expectations are disrupted because our child is in some way atypical. A voice protests: What’s happening?This is not what I expected!

Learning That Your Child Is Different

Experience has taught me that it is impossible to predict parents’ reactions to the news that their child is atypical. Initially, their outward response may be plucky: “Okay, what can we do?” Or they may retreat into denial: “This can’t be true!” But whatever they say out loud, I know that their internal reaction is much deeper and less rational. Parents commonly struggle with fear, anger, denial, sadness, shame, and resentment. Underlying each of these emotions is a profound sense of loss that, unfortunately, is rarely acknowledged by pediatricians, mental health professionals, or well-meaning family and friends. What exactly has been lost? The fantasy of the perfect child, the child who was supposed to evolve from that perfect cherub a parent falls in love with in the first few days of life. The child they imagine will reflect the very best of Mom and Dad.

Some children I see in my practice are delayed, hyperactive, or struggling to master the demands of their external world. Some are physically ill. Some are depressed, anxious, are on the autism spectrum, or are highly sensitive, tightly wound, or quirky. Some are quite gifted in certain ways but are delayed in other areas. And some kids are just different. Or difficult. Their parents typically ask for an assessment in order to understand their children better and to figure out how to help them. They are often at a point of exasperation, if not despair. Yet I find all of the children (with rare exceptions) to be endearing and extremely interesting. And so many I find to be quite unique and promising in their own way.

I spend a lot of time with the children in my practice, getting to know them, figuring out how they learn, what makes them happy, how they cope with their challenges. Spending so much time with these kids, I become very attached to every one of them. I can see beyond their atypicality to who they are. To me, it is always awe-inspiring because I know that this world needs all types of minds. The most amazing and game-changing contributions have come from atypical and unique individuals who did not fit into the narrow expectations of current societal and academic norms. I look for the gifts behind the disability and the potential in each child. These kids, I sometimes marvel, are going to be our future leaders. Movers and shakers. Innovators and healers. I truly believe that each child has a gift to offer.

You might think the toughest part of my job is telling parents what is “wrong” with their child. And sometimes it is. But often the harder part is convincing parents that, although there might be a delay or a diagnosis, their son or daughter nevertheless has many wonderful attributes and genuine strengths. I see the faces of discouraged, frightened, or angry parents, faces that tell me so much about what I’m up against. Many parents don’t believe me. Some are hostile. Many are on the brink of tears. Their reasoning brain has temporarily shut down and they are flooded with emotional reactivity. These parents, and thousands like them, are experiencing something that has only recently been acknowledged and named: They are grieving. They’re grieving the loss of their idealized child.These mothers and fathers are grappling with the inexplicable feeling that, as Emily put it, “Something has been lost that I never really had to begin with.” A parent’s sense of loss and the accompanying emotional reactions can be devastating.

If you are the parent of a child who is atypical, you know what I’m talking about. And I know what you’re going through. I want to help you navigate your way through the emotional minefields that families like yours encounter, so that you can become more comfortable with your life and more supportive of your child. Parents need to understand their own reactions. They need to know that they are not alone, and that what they feel follows a universal and predictable sequence. I hope that as you come to understand the emotions that arise as you parent your atypical child, you will not only become stronger and more relaxed, you will become a better parent.

Are You Ashamed to Admit You’re Disappointed?

We not only expect to have ideal children, we expect ourselves to be ideal parents, and ideal parents are not supposed to be disappointed when they discover that their child is different. If you are like most parents, you may believe you’re supposed to take your child’s differences or diagnoses in stride and be grateful for your uniquely wonderful son or daughter, regardless of the behavioral, learning, or medical challenges that disrupt your life every day. You may think you are not allowed to feel angry, resentful, or sad even if your child’s condition affects the quality of his life, where she is going to school, who he can play with, the quality of the family’s life, and your own plans for the future. You may try to suppress your disappointment and condemn yourself because you believe it means you are selfish, uncaring, and unkind.

Admitting that you can’t give up the image of your ideal child—that every day you catch yourself falling into a quagmire of “what-ifs”—may leave you feeling terribly guilty. You may wonder why you are not the parent you want to be, and you may beat yourself up over it. Disappointed in yourself as a parent, it’s likely that you nonetheless cannot shake the other disappointment, the one that is reflected in the enduring mental picture of the little boy or girl who does not have the problems your son or daughter has. That imagined child was supposed to materialize, but now he or she never will. And you probably feel ashamed of yourself for even thinking such thoughts.

News flash: It’s normal to feel this way!

In the 1950s, the psychologist Carl Rogers developed the idea that there are three basic aspects of self-concept. I believe these are transferred to how we view our children, and that they can help us make sense of our conflicted and guilty feelings about parenting an atypical child. They are:

As parents, we inadvertently see our kids as an extension of our own self-image. Our self-esteem tends to rise and fall according to things such as which preschool our child gets accepted to, how fast he learns to read, how many awards she wins, and so on. And our ideal self is threatened when we recognize that our child is not ideal. With our sense of self all wound up in our child, it’s no wonder that we become profoundly conflicted when that child does not meet our expectations—no matter how lofty and unrealistic they may have been in the first place.

In their book Parenting from the Inside Out, Daniel J. Siegel and Mary Hartzell note that we bring our own emotional baggage to our role of parenting, and this can influence our relationship with our children in unpredictable ways. Many parents had issues similar to the ones their children have, and the idea that their child will have to suffer from these issues like they did can leave parents feeling heartbroken and worried. Your relationship with your child can be affected by these and other unresolved issues in your own life, and this may also affect the way you react to a child who does not live up to your expectations.1

We human beings are hardwired to want to feel safe and connected to the community around us. When we have a child who is different, it can make us feel as if our position among our friends and the larger society is suddenly threatened. At the same time, we may love our child fiercely and be extremely fearful for him or her. Having an atypical child evokes different emotions in different parents. While some avoid, deny, or search for someone to blame, others hover and overprotect to the point of hindering the child’s natural development.

Your conscious or unconscious fantasy of having an ideal child is a normal part of being a parent. It’s normal to have great expectations for your son or daughter, and to feel sad when those expectations are threatened. It is part of your own internal need to find perfection in your world. And that’s fine—it’s human; it’s just not realistic. There is a term in humanistic psychology called congruence, which means accepting that our real self and our ideal self are very different, a gap that can be a source of psychological suffering. We will talk about acceptance later in this book. For now, and possibly for the first time since you suspected that your child had a difference, give yourself permission to feel the sadness and disappointment that you may have been suppressing. Let it be okay to feel that way in this moment. Then, when you’re ready, take a deep breath and be open to the opportunities for hope and joy that this child, along with his or her differences, will bring to your world.

Letting Your Feelings Out

Why is it so important to acknowledge your disappointment as well as all your other feelings? Because when you suppress or deny those feelings, the denial turns into anger that is directed either inward or outward. Anger directed outward can turn into aggression. Aggressive anger may take the form of criticizing, ridiculing, or otherwise lashing out at your spouse, your child, or others. Anger that is directed inward can turn into depression and increased sensitivity to stressors. Some parents who turn inward shut down emotionally.

I have seen a number of parents who do not want to deal with their feelings regularly belittling their child. Or screaming at each other. Or blaming the school and switching schools abruptly. Or shutting professionals out and not being able to get the help for their child that he or she needs. No well-meaning parent wants to be the cause of their child’s distress, and yet parents’ unacknowledged, unresolved emotions can cause them to do just that.

On the other hand, when parents are in touch with how they’re feeling and can work through their emotions, their self-awareness and self-care creates a safe haven for their child. And that is the ultimate goal. Acknowledging and dealing with your feelings—even the so-called negative ones—is important not only so you feel better about yourself but also so you can better guide and nurture your child.

Sometimes one negative feeling can cover up another that is even more difficult to face. Lyle, the father of a young boy diagnosed with autism, admitted to feeling disconnected from and cold toward his son. “I just can’t relate to him, so I kind of shut off when I’m around him,” he told me. I explained to Lyle that if he felt cold and detached toward his child, it was important to figure out why. Underneath “cold and detached” is usually anxiety or anger. So Lyle had to consider why he might be angry. Did it make him angry that he had the added burden of parenting a special-needs child? Was he angry at his family and friends for failing to understand his son’s condition? Was he anxious that he in some way caused this? Was he too worried about his son to connect emotionally—was it easier to “shut off” than to confront his feelings?

Parents of atypical children often fear that their own emotions are not only shameful, they are also abnormal. Mara, whose five-year-old daughter had significant learning differences, confided to me that she felt “really guilty for feeling this way,” but that she was jealous and resentful of her neighbor whose kids did not have the challenges Mara’s daughter had. “Here she is complaining about being overwhelmed just because she has to chauffeur her daughters to piano lessons and soccer practice—and meanwhile I’m stuck taking my little girl from one doctor to the next, to all types of remedial therapies. I don’t want to resent my neighbor and feel bitter, but I do. Is it normal to feel this way?”

After I reassured Mara that her feelings were definitely not uncommon, she asked me what other emotions were experienced by parents like her. I told her, “Look at the feelings chart hanging on the wall. Every single negative feeling on that chart can crop up for parents of atypical kids.”

I keep a feelings chart in my office for many reasons, but one of the most important is to remind parents that what they’re going through emotionally is not unusual. I want them to know that they do not have to fear that those negative emotions are shameful or embarrassing. And I want you to know that as well. To the contrary, being open about what you’re feeling, at least to yourself in private, is the start of a healthy process that will benefit you, your child, and the entire extended family. Of course you will not want to share negative feelings with your child, and you’ll want to be careful that the adults you confide in will be discreet. But honestly admitting your feelings to yourself is an important step you need to take.

Inside the Brain of a Parent

Logic may tell us that no one is perfect, but nothing about parenting is logical. Our response to learning that our child is atypical is rarely logical either. Yet pediatricians, teachers, and school administrators often deal with parents in a rational, logical, practical way: This is your child’s problem. This is the solution. Or even harder: We don’t know what to do with your kid, but he sure has a problem—please go home and fix it!

If only it were that easy! It took me years to realize that many parents of atypical children, upon hearing a diagnosis or a teacher’s suggestion that their child be tested, are too overwhelmed by their emotions to be able to quickly take the appropriate steps. That’s because the “emotional brain” naturally takes over in traumatic situations. There is a biological explanation for this response.

Parenting skills arise from a fine interplay between several areas of the brain. Emotional surges from the limbic system (the emotional part of our brain) are balanced against the more sophisticated neocortex (the thinking part of our brain) to make rational decisions and respond flexibly, with both empathy and insight. Primitive caregiving instincts to nurture and protect our young originate in the limbic system, while the neocortex gives us skills that are unique to humans: reflection, regulation of our emotions, and intuition (the ability to read emotions in others), or what Daniel Siegel calls mindsight.2 The limbic system is referred to as the emotional brain, the neocortex as the thinking brain. When parents have heightened anxiety, the limbic system (the emotional brain) suppresses the functions of the neocortex (the thinking brain).

The emotional brain is not only responsive to negative input. It also gives us remarkable experiences: It facilitates our parent-child attachments, our appreciation and creation of music, art, and poetry, our imagination, our sense of wonder, and our joy at the sight of a sunset or our newborn child. However, if our brain becomes overloaded by stressful or traumatic experiences, it starts to misfire and we lose the ability to strike a balance between emotional surges and logical problem solving. Depending on our level of resilience and how deeply we react to unexpected traumas, reactions to finding out about a problem with our child can impact our nervous system and in turn our body functions: Our heart rate can speed up, we can begin to hyperventilate, and our digestive region can become uncomfortable. Losing our emotional balance can be an immediate and short-lived reaction or it can persist for an extended period.

Part of the reason for this is that stress floods the brain with the chemical cortisol, which activates the limbic system and suppresses the middle prefrontal cortex, the area responsible for calming, regulating, and balancing emotions and thinking. Brain chemicals are powerful agents that affect our response to our children, for good and for ill. Hormones such as oxytocin, vasopressin, and prolactin are “parenting drugs” that enable mothers and fathers to fall in love with their child and maintain strong ongoing nurturing patterns. But when the brain senses a threat—for instance, our child’s impending meltdown in the parking lot, a looming diagnosis, or a call from the principal’s office—our cortisol levels surge and our mind goes into a primitive fight-or-flight response. Our ability to parent reasonably (via a balancing act between our limbic system and our neocortex) and lovingly (due to hormonal surges) becomes suppressed. Our functioning may become chaotic as we are bombarded by feelings, fears, anxieties, and defenses. Some people shut down and become catatonic in face of the external chaos, losing their ability to function in normal activities. Luckily, most adults are not in that state for too long, having learned techniques to quiet their minds and control their emotions. Adult society is predicated on the assumption that we are in control of our emotional brains and can make reasonable and prosocial choices.

But that is not always the case.

For example, if I found out that my neighbor’s child had autism, the problem-solving part of my brain would light up and I would immediately think about referring the parents to an excellent social skills center in the neighborhood. However, if that diagnosis were suddenly about my child, solutions might not pop up so easily. My anguished emotions would flood my reasoning brain and all systems would temporarily shut down until I could find my internal equilibrium. I might even become relatively dysfunctional, crying or yelling a lot. My limbic system would hijack the logical, reasoning part of my brain. I would be experiencing a personal trauma.

When your child seems different or isn’t learning normally, your expectations are disrupted. And whenever your expectations are disrupted, there is some level of trauma. In a sense, everything about raising an atypical child is so loaded with stress that any deviation from the expected script is bound to trigger a traumatic response from the parents. Some parents are more resilient than others, and people do react differently to similar experiences. But trauma will always disrupt the reasonable response, thus changing parental behavior.

Five Emotional Phases to Expect

It may surprise you to know that the word to describe what most parents experience when given their child’s diagnosis is grief. Using words like grief or loss may seem overly dramatic, but while the loss of your ideal child doesn’t compare to the experience of actually losing a loved one, it is a loss nonetheless. As a parent of an atypical child, you are in a unique category. You have “lost” the idealized child you had expected to parent, and to some extent you believe you will be losing the typical family life that you anticipated. Underneath the grief, you may be feeling scared and vulnerable.

Recent scientific studies suggest that repressing or denying your emotions is unlikely to make them go away, but becoming aware of what you are feeling in the moment and being able to talk about it helps tremendously when it comes to managing your emotions. Research has found that when you name your negative emotions, there is a shift in their intensity.3 Your anxiety lessens and you feel calmer. This important neuroscience discovery comes with a catchy slogan, “Name it to tame it.” If you can mindfully put words to your emotional state without judging it, you allow yourself to grow to the next level, hopefully to a place that is more resilient and better able to cope with the challenges.

In my work with parents of atypical children, I have seen that they go through a series of emotional phases as they deal with the disruption of their expectations and acclimate to the reality of their child’s condition. These phases in some ways parallel Elisabeth Kübler-Ross’s five stages of grief, but there are important differences, the most obvious being that no actual death has occurred. These phases are more fluid, with parents often moving in and out of the various feeling states several times over the course of a month, a week, or sometimes even a day. Parents may experience some but not all of the phases. The five phases are:

(Continues…)

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Excerpted from "Not What I Expected"
by .
Copyright © 2015 Rita Eichenstein.
Excerpted by permission of Penguin Publishing Group.
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.

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