Tears for Kids I Never Met: Autism and Grief

As with all posts on this blogs, materiel changes in the descriptions of clients have been made to insure confidentiality.

It happened somewhat suddenly.  She's a 10 year old child with high functioning autism who has been coping pretty well with her parents' divorce last year.  We were discussing, again, the death of a grandparent a couple of years ago - a topic she often revisits, her child's view of heaven where grandma is, where grandma will greet her when it's her time to go to heaven.  The topic of prayer came up and she casually mentioned her prayers for a child she knew from her school who had been injured in a freak accident and was in the hospital.

Mom mouthed to me that the peer had actually died that morning while her daughter's head was turned in my direction clearly hoping to avoid the discussion right now when suddenly, innocently, she turned to her mother and asked if her friend would live.  Mom was caught a bit by surprise, just as the accident and death of the classmate had caught her by surprise.  She gathered herself strongly, softly, and told her daughter that her friend had, actually, died that morning.

The pain was honest.  Immediate.  She cried out after double checking what mom had said the way we do when we're preparing to absorb something for which we are unprepared, and then buried her head in her mom's lap, crying and talking at the same time about how sad it was.  She then came to me, her arms spread open looking for the physical validation of life a  hug provides and cried on my shoulder before returning to the comfort of her mom's arms.

Mom went on to note with sadness about another child who had died in another freak accident a couple of years before.  Coincidentally I had known of that tragedy via another client who  had known that child. It all came back to me; the description of the circumstances of the child's death, the mother's attempts to cope, my client's struggle to absorb the reality that mortality brings to the forefront in the face of a tragedy.  A surprising and sudden turn of events that moved us so deeply.

And all three of us were suddenly tearful together.  My 10 year old client, openly crying at having to learn the lesson of death again.  Her mom, having had to tell her what no parent wants to tell a child - the inherent message that challenges the assumed safety we expect from life.  Me, adjusting to the rapid sequence of events that afternoon; the tragic death of my client's friend and my concern as to how this sweet little girl would cope with the complexities she suddenly faced; the coincidental review of the another child's death with the immediate recall of the pain that loss brought to another client.

It was not quite bittersweet - there is nothing much sweet about death. Yet as I consider the meeting now, there was such love in mom's eyes for her daughter, and the daughter's seeking comfort from her mom as she struggled to comprehend the frailty of existence.  My fullness of emotion at the depth of connection this child with autism has to her friends and family.  Maybe, as I think of it, there was an unlikely and unexpected kind of sweet to the moment.

Autism: The New Racism?

On December 6th, 2016 our nation may have turned a new corner in the annals of hate.  Richard Spencer, who advocates that the United States become an Aryan nation - a man who hides behind a seemingly benign and objective "National Policy Institute," was confronted when he spoke at Texas A&M about his favorite topics, like the need for oppressed whites to have their own country.  What was curious was his response to the person exercising the first amendment right of protest - the same right he invokes when he plants the seeds of hate.

His response to the woman opposing him was "Cool down the autism...." followed by "...look how fat you are."

So it's come to this.  The epithet that people, from adolescents to those of hard core of hate will now be using as a slight is the accusation that someone has "autism." It reminds me of my high school days when we used "mental" as a bash.  Now millions take Prozac and it's quite normal.  15 years ago when my kids were in high school and the put down of the day was how "gay" something was.  It took a lot of work for us to teach them that sexual orientation was not a topic to bash.  It took a lot of work for us to teach our children that demeaning others was wrong.  Period.  Whether sexual orientation, weight, religion, we worked hard to instill in our children that hate speech is wrong.

So now, someone in the spotlight of the news, using the 15 minutes of fame accorded him by Andy Warhol accuses another opposing his hate baiting of "autism."  Autism that can be cooled down.  This is not the forum to review what autism is.  His ignorance won't be changed by reviewing the neurological complexities and subtleties of the disorder, the breadth of autism's wake or the intensity of its most severe presentation, the emotional or financial expense endured by families with a child with autism.  I imagine those who believe in the unique nature of "whiteness" would also believe that autism is an affectation of some sort that can be "cool"ed.

That spotlight, one in which the Nazi salute is normative, is one that sadly is influencing the ignorant quotient of the nation.  The thought that his brand of hate is now legitimized in the bashing of autism as the new "N" word is as appalling as it is absurd.  But racism and hate, as we know, is indeed absurd.  Absurdity seems to now be the new norm.

A junior high school mentality might be, can I say, forgiven?  After all, people in their early teens are not those to whom we look for moral guidance.  They're still developing.  But Mr. Spencer is an adult. Maybe we can blame his parents for not intervening?  Maybe it all started with his potty training?  Nope, he's just a hater.  And even people with autism know that hate is wrong.

"I Pulled the Car Over"

It was the simplest of statements.  A mom I've been working with regarding her only child said that while doing errands her daughter went on a bit of a rant with her about a whole long list of things, some clearly pertinent, some that seemed less so.  Mom's review of the incident with me included her stating "I pulled the car over to speak with her about it."  Mom then proceeded to spend the time needed to listen to her daughter and begin to talk the issues through before resuming the chores.

Imagine that.  Telling a child that her concerns are so important that the chores can wait.  No multi-tasking.   People have a hard time not multi-tasking when waiting on the check out line these days - the emails, calls, texts and social media posting just CAN'T wait.  Seemingly.  No minimizing of her concern.  How many of us have said "that's just not true" or an equivalent dismissal to kids who are learning to communicate with us?  How many of us have just ignored them?

So when this mom said to her child that the chores can wait, she said "there's nothing more important that I can do right now than listen to you when you're expressing your concerns to me," it gives me reassurance that regardless of the choice the child may make with the issues she has, this mom has a bead on something quite important.

I'm often reminded that we who are parents would absolutely lay our lives down for our kids - it's important they know that.    But most of us don't live in war zones.  When heaven forbid something bad happens to our kids, we'd happily take the hit for them, and I think kids know that, even when it's impossible for us to accomplish.  But, do your kids know you're willing to pull the car over for them when they need to talk? Most all of us live in driving zones.

Different Differences

I was intrigued by an interview I heard with Robert Hoge who  wrote a children's book, a memoir about being ugly.  Hoge was born with severe birth defects - his legs were malformed and ultimately both had to be amputated.  While he quickly adapted to walking with prosthetics (that he quickly shed after school, having learned to move about quite well without them), it was his face that inspired the book.

Hoge was born with a large tumor right at the bridge of his nose.  The tumor was able to be removed, but it's growth totally absorbed his nose and resulted in a severe spreading of his facial features.  It was years before his eyes were moved enough to the front that he could focus on one thing at a time instead of seeing more like a fish or other creature that has eyes spread on both sides of the skull. He endured countless surgeries and made the decision at 14 to pass on the "big" surgery that would, said the doctors, make him look good, but there was a catch (that I won't reveal, to avoid spoiling the story more than I have).  His story was compelling and well worth the read, for adults, children and, I believe, particularly for kids with autism and other developmental disabilities.

People with autism and other DD's often become aware of how "different" they feel, and it can cause a great deal of distress.  I hear it all the time from them in different ways.  Younger kids who just don't wan't to be different without the ability to articulate why.  College kids with HFA who, despite their valiant efforts can't find the romance they see all of their friends achieving.  We all want to "belong" to the "group."  Social relationships are critical for us, even for many people with autism who might not as connected with others as we think they might.  I think there are lots of folks with autism who don't feel the strength of social connection that NT's (neurotypicals) feel, but feel connection - or want to - none the less.  Their awareness of being different interferes with their ability to connect at the level they care to.

Hoge had an awareness that I thought was wise beyond his elementary years when he came upon it.  He began to notice that he wasn't the only person who was different.  There was the kid in a wheelchair.  Another kid who need more academic help.  And others who had their unique differences as well.  As Hoge put it, he noticed that he just had "different differences."

Different differences.  What a beautiful way of understanding the variety of the human condition.  It's something I've already encouraged some of the kids I work with to consider, to read.  Because after all, aren't we all different?  Accepting the reality of who we are, warts (or tumors) and all is often a very long and difficult struggle.  But it's a struggle that's worth it.

Fingernails On The Chalkboard, Autism and Success in the Workplace

It's a sound almost all of us are familiar with - the sound that sets our ear on edge, the harsh sound of fingers slowly scratching their way across a chalkboard, a sound that, prior to whiteboards and smartboards was sure to make the girls squeal.  And the guys squirm.  It's a sound I've used as a metaphor in my work having to do with getting used to something that just sounds uncomfortable.

It may be a husband needing to learn how to listed to his wife without proffering solutions.  Men often don't understand that the listening is as important, and often more important than fixing the problems.  Men, being hammers, tend to see everything as nails.  Thus, when she speaks, husbands want to fix.  Listening can seem uncomfortable, even wrong.  Just like the sound of fingernails on the chalkboard.

I often use the metaphor in the following way: imagine if a new form of "Hunger Games" government declared that we all must engage in 1 minute of fingernail on the chalkboard noise per hour.  We'd all hate it at first, but after a number of weeks or months, we'd accommodate to it.  Some better, some worse, but we'd accommodate.  Or a less onerous government declared that we all must (MUST) play 1 hour of tennis per week.  Well for the tennis players that'd be great.  For the rest of us, we'd have to learn, and it'd be hard.  Many of us would absolutely stink at first, we're older, fatter, not in shape or athletically inclined or just don't want to play tennis for an hour per week.  But as it's the requirement of the government, we do it.  All of us, even the least prepared and the least inclined, would improve, even if begrudgingly.

The thought came up again when I was speaking with a close friend and colleague about the difficulty "high functioning" folks on the spectrum experience in the workplace.  We both see lots of "HFA" folks and (putting aside the oft mistaken notion that engineers "must" have autism") folks who really do have autism and succeed in the workplace seem to have some things in common.

One thing HFA folks often do is focus well on their work - when the work is a good fit for them.  One thing they tend to do as well is tolerate (even if awkwardly) the interpersonal relationships so many "NT"s (neurotypicals) thrive on in the workplace.  It may not be a struggle, it just might be tolerance of the requirement to have the level of social interaction that the NT's insist upon. Depending on the person, the amount of insistence on social involvement in the workplace is tolerated.  Like the above mentioned tennis or fingernails on the chalkboard examples. Pick your metaphor.  But what it's likely just not is natural and comfortable.  It's tolerated.

I have been observing that many of successful adult HFA clients have learned to tolerate social interaction in the workplace.  They often don't "get" the social needs and subtleties of the NT community, but they understand it's a requirement for them to succeed.

Angry Dads, Angry Moms - The Struggles of Parenting

As with all posts, materiel changes to descriptions are made for reasons of confidentiality.

Heard recently in my meetings with clients:

"He's willing to travel from Chicago to see his nephew's college graduation, but won't set aside to visit his daughter," said a mom, now happily remarried of her ex's relationship to their daughter.

"He yells at me, no matter what I say or do," referring to his father, says a college freshman who's received a full scholarship to an ivy league college.

"All he does is yell at my kids," says a mom of her second husband.

I've been aware lately of angry parents expressing anger to their kids.  Anger can be active, in the form of yelling, swearing, intimidation, actual physical abuse or passive, in the form of cancelling of visitations, non initiation of visitations (for which the children thirst) or putting the children in the middle of parental struggles.

Despite divorce decrees that almost uniformly instruct parents to insulate the children from their often ongoing disputes, parents so frequently disparage their former partner to their kids.  Kids come into sessions describing their parents' hurtful antics, their pain poorly disguised.  And this despite parents' almost universal denial that they'd ever speak poorly of their ex or put their kid in the middle.

The examples would curl your hair, but are, I believe, actually symptoms of other maladies.  Yes, when parents misbehave with their children it is usually symptomatic of their fatigue, their depression, an expression of their own lack of skills to cope with the loss of their marriage and of their children to whatever time the children visit their ex, the seduction of gossip and their denial of the import their parenthood has.

What are the stresses parents have?

Financial: child support can be a burden, particularly when parents are jealous of their ex's ability to collect monies that, despite legal mandate, feel unfair.  It galls a parent who believes they have been betrayed or worse to pay money to the person who hurt them so deeply.  Indeed two do live more cheaply than one, and while a couple might share the financial/home duties with one being the primary earner and the other not earning at all, or earning a modest wage, those norms are often shattered with divorce, creating two individual single parents who have to learn to juggle both income generation and the full responsibilities of parenting.

Single Parenting: Being a single parent can be stressful, financially as well as emotionally.  Trying to date while having primary responsibility for children is a complicated matter with parents trying to balance the needs of their children with their own emotional needs to create deep and loving attachments.  Being remarried might not bring the relief desired, as children often resent the "new" parent and/or the step parent is often hesitant to become embroiled in what is obviously a complex process between biological parents and the children.

Mental Health: The frequency of mental health challenges of adults is well documented elsewhere.  It's hard enough to cope with things like depression, bi-polar disorder, anxiety, addiction with the support of a partner.  Coping with them alone or with the combination of the variety of other stresses mentioned here and elsewhere is difficult beyond what can be described.  One of my personal beefs regards the number of men who are surly and irritable, firmly denying or minimizing that they might be depressed, when irritability is a classic sign of depression.  Men are no less vulnerable to mental health challenges than are women.  Period.

Legal:  Just as marriage is a legal relationship, so is divorce.  Everyone has a legal right to representation, as it should be.  But the stress of legal actions regarding modifications of visitation and claims of contempt due to extreme distortion of relatively minor incidents are thinly veiled aggressions against one another.  People spend absurd amounts of money on these actions (see finances above) and the amount of energy and time spent as well invariably leaks its emotional sludge down onto the children.

Gossip is a seductive and subtle way that hurts children.  Gossip is hard for almost all of us to combat, but when one parent gossips about their ex, the child learns so many lessons - all of them bad - about relationships.  Gossip severely harms, even when it is factually based.  How many kids "learn" of a parent's extra marital affair?   It's bad enough that these things happen and are hurtful to a marriage.  Revealing them to children creates hut that is unlikely to ever fully resolve.  Further, it instructs children that this sort of behavior is, essentially, normative.  Remember, "normal" is whatever happens to you.  Children growing up in hurtful settings, whether dysfunctional homes or war zones (they can really resemble one another) learn that their situation is "normal."  In those cases, what do those children bring to their adult love relationships?  What have they observed and learned about how adults manage their stress?

A short digression about the power of gossip is told:  In teaching a student about the danger of gossip, the teacher ascended to the top of a tall building  holding a feather pillow on a windy day  The teacher instructed the student to rip open the feather pillow, allowing the feathers to be taken by the wind, swirling them around as far as the eye could see.  The teacher asked the student to assess how difficult it would be to collect the feathers and stuff the pillow again.  The student  looked at the teacher incredulously, as collecting the myriad of feathers now scattering through the neighborhood would be impossible.  The teacher responded that gossip is like the feathers.  Once they are out, there's no getting them back.

Our society has come to view divorce, addiction, extra marital affairs and the accompanied varieties of pain and suffering as normal, as they all happen so often.  Yet invariably, the children suffer the most.

Simple Rules for Children

While having dinner with a friend recently, he shared advice he gave one of his grandchildren, let's call it a boy who was having a difficult time coping with the variety of stresses that can affect a child in the early elementary years.  The difficulties he was having are a bit besides the point for this discussion.

He told his grandson 3 simple rules of life:

1. Smile and the whole world smiles with you.  Cry and you cry alone.
2. If you look for trouble, there will always be people around willing to help you find it.
3. When you are happy, you win, when you are sad, you lose.

I see a great deal of wisdom in these rules:

1. Smile and the whole world smiles with you.  Cry and you cry alone.  Having a positive attitude is a critical skill to child development (and not too shabby a skill for the rest of us to work on either.)  My friend's grandchild often would cry as a way of getting attention.  At some point, if you cry a lot (or complain a lot for the adults who need translation), people will begin to tune you out, or at least discount the veracity of your concerns.  Ultimately we can find ourselves pretty isolated, wondering why we no longer have the attention to our concerns that we believe they merit.  It can easily lead to the lesson learned in "The Boy Who Cried Wolf" fable.

Loneliness is a horrible place to be.  Crying alone all the more so.  Most of us have experienced times of loneliness and know about its isolation and sadness.  It can create its own whirlpool of stagnation, with loneliness leading to tears that are ultimately shed alone, which is sad, depressing, and leads back to more loneliness.

Learning how to smile and, as a result, creating a positive attitude is always a win.  We all know people who are amazingly bright and cheerful (you may even be lucky enough to be one of them!)  We all can cite examples of how much the success of a smile brings success in relationships, business and life.  We see the proof of this daily.

2. If you look for trouble, there will always be people around willing to help you find it.  My friend's grandson had a habit of getting attention by instigating conflict with siblings - a trick as old as the hills.  Provocation breeds conflict, and then the opportunity for attention.  The boy was repeatedly provoking his siblings in a fashion that left him the victim (see #1) and he couldn't find a way out of it.  Learning that trouble will find you much more easily if you are looking for it can assist in teaching the child to cease from looking for trouble.

My friend notes that these first two points are behavioral.  Smiling is a behavior, as is "behaving badly" (a phrase often used by Ross Greene - see other posts on his work) is also a behavior  The next one, he cites is emotional, drawing on our natural draw towards competition.

3. When you are happy you win.  When you are sad, you lose.  The "win - lose" paradigm is simple, yet elegant, to borrow a phrase.  Its simplicity is in its view of causality.  Happiness causes winning, sadness causes losing (so to speak.)  The elegance is that what we win is so variable depending on ones' station in life.  For children it might mean getting the positive attention that is a normal craving.  For adults its often much more subtle, more varied, as the things that make us feel good are so often less tangible.  But success, no matter its shape for form, no matter the age is a win.

I'm planning on using this and will let you know how it works.  So far, for my friend's grandson, its working quite well - after his mom remarked about what a lovely sparkle he had in his eye at the playground, he explained to her in his own words, that when he's happy, he wins.