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

by Rita Eichenstein

—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

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

Parents are not robots who can automatically deliver a menu of services to their child. They are human, with needs of their own.

There are at least five feeling states that parents often experience: Denial/retreat Anger/aggression Bargaining/seeking control/seeking solutions Depression/isolation/shame Acceptance/equanimity/integration

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.

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.

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.

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.

phases. The five phases are: Denial/retreat Anger/aggression Bargaining/seeking control/seeking solutions Depression/isolation/shame Active acceptance/equanimity/integration

It is not the imperfections that create difficulties, it is our expectations. Expectations make it so much harder for us to fully embrace both our children and ourselves.

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Here is an example using the mother of an eight-year-old son with sensory processing disorder and high-functioning autism: What was the situation? How did you react in the moment? How did that work for you? What can you learn from that? What do you need to do next time in order to avoid a repetition of this event?

Tool for Parent. Priming

1. What was the situation? Jon fell apart at the neighborhood birthday party because he was overstimulated. 2. How did you react in the moment? I grabbed Jon and ran home mortified. 3. How did that work out for you? We did not stay long enough to try to help Jon cope with the stimulation because I was too embarrassed in front of the other parents. 4. What did you learn from this experience? I need to emotionally prepare myself to handle Jon’s unpredictable outbursts and not pay attention to others. I can help him if I am prepared. 5. What can you do next time to prepare? Prepare myself emotionally. Put Jon first. Let go of my expectations. Focus on what is really important: helping Jon. I can only do this if I am cognizant of my feelings and let go of my expectations that Jon will have typical reactions. Whatever comes, I will accept and deal with it.

Parent tool. Priming example

As an aside, I’d like to mention here a technique we’ll be talking about in later chapters: the power of physical touch to release oxytocin, a hormone that calms anxiety. As counterintuitive as it may seem while you’re presenting “hard evidence” to a denying partner, what actually might work better is a hug. The denier is frightened and has shut down. Had Allegra been able to give Michael a long hug and say, “We’re in this together. We’ll make it work,” her words and touch would have released oxytocin, which might have softened Michael’s wall of resistance. Pat Ogden referred to this as working “from the bottom up,” that is, from your body and physical sensations to regain control of your cognitive brain.1 You can use inner body sensation to calm someone close to you through hugging, or if you’re a clinician trying to calm anxious parents, through a reassuring pat on the shoulder or a handshake. Softening a person’s resistance can be more effective than trying to break through it with hard cognitive evidence.

tools for dealig with denial hugs

Why didn’t Isobel’s elementary school recommend that she be tested? The unfortunate answer: schools don’t typically recommend testing first-graders because they are in denial. Yes, schools can also be in denial about the needs of atypical children. Despite extensive research on the importance of early intervention, it is quite common for schools and even pediatricians to take a “wait-and-see” approach that ends up having the effect of “wait to fail.” Administrators and teachers are aware that there is normal variation in the learning timeline of different children, so students are not screened until they show a profound lag in academic mastery or pronounced difficulty in social-emotional behaviors. In some schools, this means it can take until third grade or later to discover that a child is lagging. It is not uncommon for me to test children who are already in middle school or even high school and have somehow scraped by, eluding the casual and benign eye of their teachers for many years.

DEFINITION: AUDITORY PROCESSING DISORDER Auditory processing disorder (APD) is an umbrella term that describes a variety of conditions that affect how a person processes auditory information, which can significantly affect their ability to process new information and learn. As a discrete diagnosis, the condition is not accepted by psychologists or psychiatrists and there are those who believe that it is part of other coexisting diagnoses.

Paul Gilbert, author of The Compassionate Mind, notes that anger comes from three specific types of fear: fear of being hurt or destroyed, fear of having no control over your life goals, and fear of being marginalized, ignored, excluded, or isolated.1

Sometimes a parent’s anger is directed not at the teacher but at school officials who “should have switched our son into a different class,” or “never told us our daughter was being teased on the playground,” or “have no reason to keep our child out of regular classes,” or “provide a terrible curriculum.” School officials may be guilty of these failures, but school policies do not cause a child to develop atypically. However, their indifference or failure to act can certainly be infuriating. I am not trying to excuse incompetent or indifferent principals or teachers. But a parent’s natural default mode is to become angry, which does little to improve a particular situation.

Anger at schools

Unfortunately, many school districts still employ a “wait-to-fail” model of intervention; that is, children must demonstrate a substantial gap in skills before they “qualify” for remedial services. This is tragic in so many ways. Children can be identified and remediated at much younger ages than is currently in common practice. Autism often can be identified in preschool, dyslexia by age six, and developmental disorders no later than first grade. The fact that I regularly diagnose common disorders for the first time in teenagers and people in their twenties indicates that many children are slipping through the cracks of the system.

Remaining school challenges

Ah, but sometimes anger feels so good! Especially when you’re right. Righteous anger has amphetamine and analgesic effects, meaning that it temporarily makes you feel strong, imbues you with confidence and power, and numbs your pain. Righteous anger is difficult to negotiate because although you are right, it will not help with your dilemma.

Righteous anger

Reality if mismatch and how to deal

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Jaak Panksepp, in his seminal book on neuroscience, The Archaeology of Mind, discusses different systems of behavior that are common to all mammals. This type of bargaining behavior in parents best fits what Panksepp calls the seeking system: “[This system] allows animals to search for, find, and acquire all of the resources that are needed for survival.”1 Not only does the seeking system help animals survive, it also feels good. Panksepp describes the “positive, enthused affect” that may accompany a seeking behavior, as well as the depression and despair that follows if whatever is being sought is not found. He concludes, “It is now clear that when the system crashes, following repeated frustrations, people will feel depressed.”

In the bargaining phase, a parent has come to accept that yes, something is different about his or her child and they had better find a solution, but he or she may not completely accept either the diagnosis or the suggested treatment. In the denial phase the self-talk was, No way, this is not happening, and in the anger phase it was, Damn those so-called experts—I hate them all! In the bargaining phase, the self-talk becomes more layered: Maybe the experts are partially right, but I’m not sure. I need to figure this out on my own terms, because I don’t like the label they’re giving my kid or the treatment options they’re suggesting. This diagnosis or treatment just doesn’t feel right to me. And I don’t like feeling out of control.

Receiving a difficult diagnosis for your child can disempower you as a parent. One minute you are in charge of raising your beautiful child, and the next, you get a diagnosis that completely takes over, relaying the message: You are not in charge; the experts are in charge. Here’s what’s wrong with your kid, and here’s what you have to

Parents like the Abrahamses who engage in bargaining by becoming well informed and proactive in overseeing their child’s treatment feel empowered. As Jim Abrahams states, “We have taken control of so many lesser issues in our family—meals, bedtimes, TV hours. Why not have that same attitude with the most important issue in our families: our children’s health? In the worst case we have learned something new; in the best case, we have improved either our lives or the lives of our children. There is no downside.” Jim is a film producer, and he produced a made-for-TV movie in 1997 titled First Do No Harm, starring Meryl Streep. Inspired by the Abrahamses’ experiences with Charlie, the film has been described as “a true story of one woman’s struggles against a narrow-minded medical

One option is to hire a medical researcher to investigate the available treatments and explain them to you. Medical researchers may be practicing psychiatrists and psychologists, researchers, or scientists. They will charge a fee to research the existing medical literature (meaning studies appearing in traditional medical journals and other mainstream academic sources, or any other area you would like them to investigate). The cost depends on how much has been written about the particular condition and on the price of medical journals that charge for access to articles. If you are in touch with other parents whose children have the same condition, you could pool your resources to pay for the researcher. The services researchers provide include but are not limited to: Finding and reviewing free medical abstracts and articles from sources such as PubMed. Finding and reviewing abstracts and articles that can be accessed with a fee. Helping parents develop search terms for PubMed, and after they have done the initial search, reading the abstracts for them and helping them sort through conflicting evidence. Culling relevant information from the What Works Clearinghouse, an organization that reviews the research on different programs, products, practices, and policies in education. Conducting searches for rare conditions and conditions where medical and psychiatric symptoms overlap.

But you can learn how to stop your worry brain from generating those exhausting negative thoughts. A technique called “Thought Stopping” is easy to learn and can alleviate anxiety or mild depression. Focus on a negative thought and say aloud “Stop!” Hearing your own voice can strengthen your commitment to stop it. As you practice this technique, you will be able to exercise more control over your runaway catastrophic thinking.

Alternative and complementary medicine does not work from the disease model. Instead, you can view depression as being out of balance, separated from your life force. This alternative view (which is thought to be rooted in Eastern philosophy, particularly Buddhism) holds that the overreaction of your mind to stresses, both real and imagined, drains your energy and causes the separation. The unremitting stress of parenting a special child, even after you recover from the shock, can leave even the strongest of parents emotionally wiped out, with their last watt of energy focused on their child. In that place of constant vigilance, it’s very easy to forget who you are as an individual, or that you ever were a person other than “Lucie’s mom.” This separation from your self—from your life force—can be a very real cause of depression. From an Eastern holistic model, you have lost perspective and lost your connection to yourself.

Daniel Siegel calls the core four S’s: seeing the child’s needs, soothing the child’s distress and creating a safe haven, which, in turn, creates an internal feeling of security.

There are several methods to cultivate your emotional strength that you can learn to develop. This is not an exhaustive list, but four feasible avenues for you to explore. These four techniques are: mindfulness-based cognitive therapy (MBCT), meditation, practicing self-compassion, and cultivating optimism.

Recent research has found that parents of children with disabilities who learned a method of MBCT, called mindfulness-based stress reduction, experienced great improvements in anxiety, depression, and insomnia.4 In fact, it was found to be so successful that a specific curriculum has been developed just for parents of special-needs children.

The Mindful Way Workbook: An 8-Week Program to Free Yourself from Depression and Emotional Distress, by John D. Teasdale, Mark Williams, Zindel V. Segal, and Jon Kabat-Zinn Mindfulness-Based Cognitive Therapy for Depression, Second Edition, by Zindel V. Segal, J. Mark G. Williams, John D. Teasdale, and Jon Kabat-Zinn

Dr. Elisha Goldstein’s books, including Mindfulness Meditations for the Frantic Parent and The Now Effect: How a Mindful Moment Can Change the Rest of Your Life. They

In Learned Optimism: How to Change Your Mind and Your Life, Dr. Martin Seligman describes his research into helping people change their mental set point. If you have a preset tendency toward depression, he says, you can change your outlook by cultivating optimism. Instead of focusing on what’s wrong in your life or that of your child, start to focus on what’s right. For example, tell yourself: “I have received a diagnosis for my child. I have tried various different treatment options; some have worked, some haven’t. Now I am working toward integrating the feasible options into my family’s routine. My life and my kid’s life are not perfect, but I am doing a good job as a parent, and things are going to get better.”

magnifies. I urge parents at this early stage to stay in the present moment and work their way slowly forward. Otherwise they may become overwhelmed thinking about the years ahead and paralyzed by the enormous reality of the present. The truth is, atypical children often need slow unpacking, symptom by symptom, treatment to treatment. Their foundations are built brick by brick. Some outgrow their original diagnoses, but many will mature into adolescents and adults who still exhibit differences.

Our brains are not wired to passively accept alarming challenges. When unanticipated stressors arise, the brain goes into “red alert” mode and the body reacts with a hormonal stress response, continually sending surges of cortisol that can affect your overall health. The brain reacts to stress by triggering physical responses such as elevated blood pressure, faster breathing, and a pounding heart. Since this is not healthy in the long term, the human brain has developed one of its most remarkable skills: adaptation. Over time, the brain adapts to situations that might at first seem tragic or unbearable. This is because our brains are wired to process new information differently than repeated information.

When our brain receives the same information numerous times, it becomes accustomed to it. The novelty-seeking switch is turned off and we respond in a predictable way. With repeated information, we learn optimal responses. At a basic level, this process, known as habituation, relieves our brain from having to rediscover the wheel every time we encounter a familiar situation.

One element of habituation is desensitization. An example would be buying a new clock that chimes every hour. The chime might be startling until you get used to it, at which point it will no longer startle you; in fact, you might not hear it at all. That’s why you’ll sometimes witness parents of small children who seem to be oblivious to the ear-piercing shrieks of their toddlers in the playground. They are oblivious—as long as the children sound happy, they no longer register the pitch of those screams. Other parents may be bothered or embarrassed by their ...

What is missing from the natural adaptation response is that it doesn’t engage your emotions. Adaptation allows you to survive, function, and take care of your child. A deep awareness of what you are feeling is not necessary to adaptation. You can be a perfectly humming machine on the outside, but on the inside, you may feel like a robot. From a brain perspective, your left hemisphere (the site of facts and linear thinking) is fully engaged, but your right hemisphere (the site of processing feelings, intuitions, and holistic problem solving) is dormant or repressed. I have seen parents who appear dazed and robotic years after their child’s diagnosis, adjusting to the routine but not to the emotionally integrated reality of living fully.

Parents who have found growth and joy in their lives because of or despite their child’s differences have taken an extra step. They have acknowledged their emotions and have consciously thought about what they want their responses to be—as you have learned to do in previous chapters of this book, and as you can explore further on your own. These parents have made a decision not to squelch the frightening feelings and questions that arise, but to face them honestly and with compassion toward themselves. These questions may include: How can I make it better? Will it ever be okay? How will my social standing be affected? Will my extended family blame me or see me as a failure? Does this mean I have to be a saint? How do I accept myself? How do I accept my husband/wife/partner? What does this mean for us as a family unit? Am I an okay person? Will I be able to rise to this challenge?

All parents of atypical children ask themselves questions like these. These questions may not arise in the conscious brain for every parent, but even at a subconscious level, parents do have these types of questions. It takes a while to find the answers and that is part of the work. But the larger part of the work is becoming conscious of the questions and insecurities that you are having and knowing how to take care of yourself in these times of vulnerability. We are all vulnerable. Strength lies not in muscling through but through acknowledging our vulnerabilities, becoming aware of our feeling...

I can tell you that those with a more positive outlook were not born with a special Pollyanna gene, nor are their children generally less afflicted than others. Sure, some of them may have had an innately optimistic personality before they became parents, but it would be a huge disservice to them to imply that their experience was less traumatic because of that. What is true is that the parents who feel hopeful and blessed make a conscious effort to look for the hope and blessings in their life. That may sound trite, but I assure you it takes as much grit and determination as mountain climbing, only the effort is invisible. You won’t get a lean physique from cultivating hope and gratitude, but you will be developing a skill that will serve you—and your family—well.

Most parents of atypical children discover that their hearts can expand to hold joy and sorrow at the same time.

“Children like ours are not preordained as a gift,” one mother explains. “They’re a gift because that’s what we have chosen.” —Andrew Solomon, Far from the Tree

As a parent of an atypical child, you have even deeper contradictions to absorb: fiercely loving your child but absolutely hating what he or she has to endure or the changes it thrusts upon you and your family. This is the basis of dialectical thinking: understanding that polar opposite feelings actually create a coherent and meaningful whole. There is light in every darkness and darkness in every light. It’s an embrace of both extremes that create meaning.

topic of interest to many researchers, including Dr. Elizabeth Larson.2 When studying parents of children with disabilities, Larson found that the way mothers express contradictory emotions such as grief and joy, or hope and fear, influences their well-being. The great emotional (and spiritual) challenge is to manage the internal tension between loving your child and wanting to erase the disability, between dealing with the incurability while pursuing solutions, and between maintaining hopefulness for the child’s future while being given negative information and battling your own fears. Larson’s research found that if parents can accept that this is a paradox, they can gain a greater sense of control and increase their optimism.

Many people have heard about post-traumatic stress disorder (PTSD), but a less well-known phenomenon is post-traumatic growth. This refers to the positive changes that may occur, or that people may choose, after experiencing a crisis or trauma. Although these people have certainly suffered, they are able to grow from crisis rather than get crushed by it.5 Viktor Frankl, a psychologist who survived the holocaust and the loss of his family, wrote many books, including Man’s Search for Meaning. In this seminal reflection on spiritual survival, Frankl described his experiences in concentration camps and how they ultimately led him to develop further meaning in his life. “What is to give light, must also endure burning,” he wrote.

What is to give light must endure burning -Viktor Frankl

But as Frankl stresses, you must choose to nurture your new strengths: “Forces beyond your control can take away everything you possess except one thing, your freedom to choose how you will respond to the situation.”