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

by Rita Eichenstein

how can you best be informed and prepared to optimize the support and guidance you give?

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.

walk you step by step through the inner and outer challenges of this journey.

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.

Welcome to a book about parenting that does not focus on your child.

All of these children’s struggles generate intense feelings in their parents—feelings like bewilderment, confusion, anxiety, and fear.

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?

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.

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.

denial, fear, bargaining with fate, isolation, and depression—along with hope, optimism, and joy.

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.

how much the parents’ mental health impacts their children’s well-being.

“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.”

A growing body of research now confirms that parents’ moods can affect the way they care for their children and how those children fare.

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

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.

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.

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...

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.

but first we must understand our feelings, know where they are coming from, and le...

you will need to understand what you are going through emotionally and acquire the tools to deal with those emotions.

our imperfections and frailties, our ability to adapt, our fears, our resilience, our bravery.

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!

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.

the emotional part—our heart and our imagination—tells us something else.

Parents commonly struggle with fear, anger, denial, sadness, shame, and resentment.

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.

They are often at a point of exasperation, if not despair.

I look for the gifts behind the disability and the potential in each child.

Their reasoning brain has temporarily shut down and they are flooded with emotional reactivity.

so that you can become more comfortable with your life and more supportive of your child.

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.

You may try to suppress your disappointment and condemn yourself because you believe it means you are selfish, uncaring, and unkind.

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.

give yourself permission to feel the sadness and disappointment that you may have been suppressing.

be open to the opportunities for hope and joy that this child, along with his or her differences, will bring to your world.

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.

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,”

Was he too worried about his son to connect emotionally—was it easier to “shut off” than to confront his feelings?

“Look at the feelings chart hanging on the wall. Every single negative feeling on that chart can crop up for parents of atypical kids.”

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.

But honestly admitting your feelings to yourself is an important step you need to take.

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.

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).

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.

My limbic system would hijack the logical, reasoning part of my brain. I would be experiencing a personal trauma.

while the loss of your ideal child doesn’t compare to the experience of actually losing a loved one, it is a loss nonetheless.

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.