All expectant parents share certain feelings—excitement, nervousness, and happy anticipation. When their child is born, a new feeling emerges: anxious calibration. How does my child compare to all the rest?

When a child is diagnosed with a disorder such as a learning disability, autism spectrum, speech delay, sensory delay, or is just clearly “different” or quirky, the parents’ world can be profoundly shaken. Every parent is on an emotional journey, but for parents of atypical kids there is no roadmap to warn of the pitfalls or point out the best scenery. It is unknown territory.

Until recently, the well-being of these parents has rarely been noticed, let alone addressed. All the attention is focused on the child. That’s understandable, but it is also a big mistake. Doctors, teachers, and therapists depend on parents to be the primary managers of their children’s treatment. If the parent is exhausted from the relentless day-in, day-out challenges, it has an impact on his or her ability to manage that treatment. If Mom is hopeless and depressed, it affects her child. If Dad is angry, distant, or frustrated, the rest of the family is affected. Although these feelings are normal, they have the potential to be destructive. Luckily, there is a way to manage them. It begins by recognizing the feelings—good, bad, and ugly—and learning about them.

What the Journey May Look Like

In my work with parents of atypical children, I have seen that parents go through certain predictable emotions as they become accustomed to their child’s condition. The emotional phases are fluid, with parents often moving in and out of the various feelings several times over the course of a month, a week, or sometimes even a day. These are not just psychological reactions; they are hard-wired into your neurophysiology in the same way that primary responses such as fight-or-flight are hard-wired. The emotions you can expect as a parent of an atypical child may include:

Denial or Emotional Numbing: Although you may have sensed in your gut that something is not quite right, a common response to hearing that your child has a diagnosis is to freeze emotionally while your mind processes the news. That paralysis often takes the form of emotional numbing, and you may go into “autopilot” mode or even deny that there is a problem: “There’s nothing wrong with our son! Boys will be boys!”

Anger or Aggression: As the numbing effects of denial begin to wear off, you are confronted with the reality of the situation. That can be painful, and the pain is often redirected and expressed as anger. Friends, family, teachers, and doctors all can become the target of a parent’s anger, as can the child. It’s especially crucial that you recognize when you are in an anger phase and find an appropriate outlet, as families with atypical children have a higher-than-average rate of divorce and domestic violence.

Bargaining with Fate or Seeking Solutions: A common response to feeling helpless about a child’s condition is an urgent need to gain control over the problem. This is a positive impulse. However, our brains are geared toward simplifying information so that it aligns with what we already believe or understand. Parents may decide, “The Internet says this condition is over-diagnosed! I’ll just put our son on a diet…change schools…convert to Buddhism…pray daily.” Some alternative approaches do work, but the challenge is to weigh reason-based solutions against the lure of magical thinking.

Depression, Isolation, or Shame: Unfortunately, these emotions are somewhat unavoidable when parenting an atypical child. But self-awareness can help you manage your darker moods. For your child’s sake as well as your own, you need to learn self-care strategies for overcoming your occasional bouts of sadness.

Acceptance: Coping with the reality that your child has special needs is a deeply personal experience. Although nobody can fully understand all the emotions you’re going through, getting the support you need will help you reach an inner equanimity and an acceptance of the unique and very real child whose parent you are.

The dignity and grace shown by a number of parents with whom I have worked is truly inspiring. One mother told me, “I can’t believe I’m saying this, because I never would have wished this condition on my daughter, but having a child with autism has enriched our lives. Our family has grown closer, our capacity for empathy has expanded, and our other children have an extra measure of compassion and social awareness.”

No one expects you to be a saint simply because you are the parent of a child with challenges. But my experience with families like yours has shown me time and again that the journey you are on will be full of unexpected feelings and events—sometimes difficult, and sometimes surprisingly joyous.

Dr. Rita Eichenstein is available for parent consultations to help support parents through this unchartered journey.  Please call or email for consultation options, also on SKYPE.

or Check out her award winning book:

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

“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  

“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

The recent events of violence this past week on the streets of Isla Vista, Calif., near the University of California at Santa Barbara, has left scores of people shaking their heads in horror.  A media talking point noted that  the gunman was troubled and had been diagnosed as having Asperger’s syndrome.

A headline already anticipated an inevitable and reasonable reaction, “Asperger’s Syndrome To Be The Scapegoat For The Santa Barbara Shooting Like Adam Lanza?” Inquisitr asks[1]
Is there really a connection? There is an important saying in statistics: correlation does not imply causation. What this means is that just because some of the recent gunmen had a diagnosis of Asperger’s Syndrome does not mean that people with Asperger’s are more likely to be killers, or even violent.  That would be equivalent of saying all Caucasian male teens are more likely to be killers, since most of the high profile mass shootings on campuses over the past 10 years have been Caucasian, and male and teen.  But just because that fact is true does not mean that you can point your fingers at young male Caucasians. Or people with Asperger’s.

WHAT IS ASPERGER’S ANYWAY?

Asperger’s syndrome is a diagnosis for people and children who are on the high functioning end of the autism spectrum.  Although as a specific category, the term “Asperger’s Syndrome” named after Hans Asperger who coined the term, has been deleted from the newest diagnostic manual, DSM-5,  it still has a strong following among parents and grown diagnosed children who refer to themselves as “Aspies”.  Aspies, are people whom you may know who are decidedly quirky. Different and obsessive, they may be excessively devoted to a narrow range of subjects and may struggle with interpersonal skills.  But just because they are socially awkward and obsessive does not mean that they are robotic.  Aspies feel things very deeply and the way they show their emotions may be non-conventional.  That still doesn’t turn them into killers.  An angry and vengeful Aspie is just as likely to turn to violent revenge as your next door neighbor’s son; in other words, the possibility exists but is random.  There is no research to suggest that people diagnosed with Asperger’s Syndrome are more violent than any other group.

FINGER POINTING:

In the wake of a traumatic disaster, there is a huge desire to finger point.  With hurricane Sandy, it was the finger pointing at global warming. With 9/11, it was finger pointing at Muslims. And with violent shootings on campuses,  are we going to point to students with Asperger’s? The fault of course lies with the individual gunman ….and the rest of us as well.

Hear me out:

WHAT WE CAN DO:

There are 2 radical changes that need to happen in the USA:

1.  Expand mental health services:  as the numbers of kids with atypical disorders are expanding, the availability of mental health services must also expand.  The World Happiness Report of 2013 notes that even in countries which have available mental health services, the vast population of those who need these services are largely under-served.  We must make treatment available, not just for the identified child but also parenting support for the parents of that child.  It is inconceivable that mental health treatment or lack of it is left up to the individual parents, who largely have no clue how to help when they are struggling with their diagnosed child who is atypical.   We must lobby to increase support of all mental health practices.  There is no question that most interventions in the form of any type of psychotherapy can greatly help provide troubled people with improved coping skills and increased resources.

2. Practice radical kindness:  The truth is, there is more diversity among us than sameness, yet people are incredibly exclusionary.  This begins from the earliest ages.  Embrace those who are different, those who are socially awkward or not physically beautiful. Invite with an open heart those who are handicapped, intellectually weaker or neurologically atypical.  Teach your children to open their hearts to those around them who are of different skin color, different abilities and different social interests.  Teach by example.  Invite over a family who has a child who is struggling.  Talk to a person next to you in class who looks a bit quiet.  Remember that everyone is struggling for the same things: to be accepted, to be seen and to be appreciated. We can learn to become a more welcoming society if we only open our eyes to those who are struggling.  Bullying,  exclusivity, elitism and ostracization  are issues we can tackle, as adults, as parents and with and for our children.  We can do this.

[1] Read more at http://www.inquisitr.com/1265968/elliot-rodger-aspergers-syndrome-to-be-the-scapegoat-for-the-santa-barbara-shooting-like-adam-lanza/#43OF7WGETm2lhKvx.99

Did you ever stop and wonder how some of our most colorful phrases made their way into our daily language? “Wake up and smell the coffee?” “Get with the program!” “Be there or be square”.  “Go with the flow”. “Hang in there!”

We use these phrases as a sort of idiosyncratic shortcut, a swath of color weaved through our daily language, a shortcut to express ourselves creatively.  Phrases pick up meaning in society seemingly by osmosis, overnight everyone is using the same phrase,  and we intuitively know what it means and in which context to say it.

“That and a dime will get you on the bus”  no longer has direct meaning since buses haven’t cost a dime for at least 40 years but we somehow understand the context.

Some Children are Concrete Processors

But what about our atypical kids? As parents of atypicals, you know that atypical kids, no matter what their specific diagnosis, will process slang expressions differently.  What might seem like a fun way to announce it’s time to clean up or take out the garbage, “heave ho, hop to it, guys!”  or, in school a teacher may call out: ‘class, it’s time to wrap it up!”  can overwhelm or confuse a child who processes information in a slower paced and more concrete manner.  Many expressions that we use can be very confusing for some children.

A concrete processor is a person who understands language in a black and white manner.  They respond best to direct and clear instructions.  “Do you see that torn paper on the floor? Please pick it up now.  Thank you for being helpful!”

Concrete processors are young processors.  We would never use sarcasm or slang to talk to a very young child but as a child grows, we expect him to pick up the lexicon. But many atypicals have difficulty with this particular aspect of social speech.

Unfortunately, most concrete processors, whether they have a diagnosis of Aspergers, autism, auditory processing disorder,  non-verbal learning disorder, ADHD or other types of learning or processing issues,  are often in situations where the language is not clear enough.  Even in schools where teachers are informed that a particular child has difficulty processing language may not understand what to do with that information.

Take Julia for example.  10 year old Julia came home from school confused and overwhelmed.  Diagnosed with an auditory processing disorder, her impatient teacher had evidently decided she was too slow that day.  Her teacher snapped out her favorite one liner, “wake up and smell the coffee!”.  Julia later said to her mom in tears, ‘what was she talking about? I wasn’t sleeping and I don’t drink coffee!”

This is not an isolated incident.  I often emphasize to parents and teachers how to eliminate sarcasm and use direct language to help a child understand what they are asking.

Ron, a 9 year old child with Aspergers, was a child who needed some interventions.  I met with his teacher to explain  how to direct his young student into more pro-social behaviors.  I told the teacher, “be direct, give an example, practice with him”.

The next day, here is what the teacher advised Ron:

“Be nice.”

The interesting thing is, Ron thought he was being nice! He couldn’t translate that not making eye contact, picking his nose and standing too close to other kids was considered ‘not nice’.   No one told him that! He couldn’t infer that “be nice” meant all of those things.

Even neurotypical children stumble over abstract language.  How often do we project expectations on our children using language that is vague or sarcastic? I have found that when that happens, chances are, we are not focusing on what specific behaviors we expect from our children, only that we are tired, impatient and would like a little break.  So we shout, “ give me a break!” or “move it or lose it!”  “chillax!” which seems perfectly reasonable from our perspective.

But I have seen enough bewildered children’s faces to know that what seems perfectly reasonable in adult-speak has no traction in their mini-me world.

Here are some real world translations from parent to child:

When you say, “Give me a break”  it really means:

“I am exhausted. I have worked so hard all day taking care of you. I am about to lose it if I do not get a few minutes of peace and quiet!”

What you could say:

“It would be so nice if you could play quietly for 5 minutes so I could take this phone call.   Here, I will set a timer.  Do you think you could be my best boy and do this for 5 minutes? What will you play with? Play dough? What a great idea! Thank you so much. I love you.”

When the teacher snaps “Wake up and smell the coffee” it really means:

“I like things done quickly. In fact, I pride myself on how fast I can get my students to work. You, Julia, are slow. It frustrates me. I know you have a disorder but I am choosing to ignore that fact because you are messing up my program.”

What the teacher could say:

“Hey Julia, it seems that you need a little extra time to get that desk cleaned off.  Would you like some help?”

When the principal says to the student in his office “just be nice” it really means:

“I honestly have no clue how to instruct you to be more pro-social. I wish you would be nice and kids would like you better.  Don’t make strange noises.  Don’t stand too close and breathe on people.”

What he could say:

“Hey Ron, it looks like you are looking for a friend today. Some days are like that. Would you like to help Ms. Smith in the library?”

It’s helpful and fun to teach atypical kids how to use and understand slang expressions and they will enjoy them too, in the right context.  But do remember that  they require direct teaching.  So the next time you want to tell your child ‘Take a chill pill’ make sure they know what to do with that.  Because, they just might answer, “I don’t take pills and should I put it in the refrigerator?”