Embracing Chaos

I took a midsummer break, dearest reader, during these so very full summer weeks of July and August.  And I have missed writing to you.  Will I come back with greater insight?  Well-rested, inspired even, after two weeks climbing mountains and swimming in waters of the Adirondack Mountains?  I thought I would.  It was a wonderful break for our family, while Owen was lovingly cared for at one of the most wonderful places in the world, Camp Loyaltown, in Hunter NY.  But the peace and internal calm lasted just about the usual 24 hours in the face of Real Life.

This week is our birthday week, Owen’s and mine.   Twenty-two years ago Owen was the present I received a few days before my 30^th birthday.  There were times when I regarded that fact as a slap in the face, or as irony, but that isn’t how it seems now.  Maybe a little of that mountain top zen remains with me after all.  I like to say that I don’t view life the way I did years ago.  I see Owen as my teacher, and I still have a lot to learn. In other words, I flunk out a lot. At the same time, it’s true that I am the parent —  I must keep on trying to reach him and teach him.  We have never been the “kind of parents” to let our kids run wild, but Owen has his own ideas.  As much as I appreciate him, and love him, and learn from him, he drives me crazy and I need regular breaks and daily support to keep on caring for him.

On this morning of my birthday, I find myself reflecting on that very thing – the hard-to-explain give and take of teaching and being taught, freedom and responsibility, that life with a child or adult with behaviors and an altered view of the world provides.   All our contact with other human beings is a chance for softening, the sanding down of our personalities.  A chance to learn to tame our impatience, relax our desire for a world without mess, or confusion, or well, other people’s needs and attitudes.  I stumble over having patience with Owen, and I also stumble trying to understand the people who don’t understand him.   At 52 I still experience shock when people don’t see the world as I do.

So where does my Accountability begin and end?  I struggle here, in all situations, and in particular with Owen.  Where are my boundaries, to use that tired psychological term.  You may be offended with my behavior, but is that because YOU are offended, or because I am offensive?  How much guilt do I assume for Owen being Owen, and encroaching on others’ water bottles, damaging things, or wandering into your house or yard?  How much should I care (worry) about how people evaluate me when his behaviors lead to trouble?  Owen can’t be allowed to do whatever he wants.  But a person is not like a hedge, requiring only clipping to take the correct shape.

In the long run, I think gentle and creative redirection over a long time is capable of teaching our son to fit better into society.  But I feel compassionate that he really doesn’t understand the concept of “property,” that when he wants something he has very little impulse control.  When I tell him he can’t have someone elses’ _____ (fill in the blank) he may shed tears of grief.  Or, he may laugh.  He may resist me stubbornly.  Sometimes he is mad.  But bottom line, he doesn’t get it – he only knows “I want” and “I am unhappy about not having it.”  He also knows guilty, and oh-oh when he’s taken whatever it is anyway and Mom is probably going to get mad.

Last night Owen ran away.  Right about suppertime, his dad realized that while he thought they were both hanging out in the front yard picking beans for supper, actually only one of them was picking beans, and the other one went off to find something more interesting to do.  I was annoyed, as the supper-maker, but I tune-out on Owen too often to be critical.  Our family fanned out quickly, checking all the usual spots – neighbors’ recycling bins, church recycling bin, picnic tables, wood trails across the street – but no Owen.   My dear cousin joined the search, and turned his teenagers out to help, combing through the summer night with flashlights.  One of his sons followed the clue of barking dogs and found Owen prowling there, one street over from ours, an inexplicable location, farther than he has wandered before, and in the dark.

This meant that we spent the rest of evening researching locating devices.  Locating devices are very expensive, and prior to now it seemed an extreme response to an occasional inconvenience.  Uncertain whether Owen would tolerate wearing one,  anticipating that he would be likely to rip, or twist, or cut himself free, we considered but did not buy one.  Until last night.

As I searched the internet for the right gizmo I found a great deal of information on wandering and locating.  I learned that wandering is terribly common in people with autism (as people with Alzheimer’s) sometimes with terrible results.  There were multiple cases reported of drowning deaths (yet again I blessed Mr. John of C.E.Rieg School who long ago taught Owen to swim).  Deaths from exposure were reported, and multiple stories of searches.  There were also stories of a mother being held accountable, charged with negligence after calling 911 for help (reason.com/blog/2015).

There are probably careless parents out there – but I think it is much more common that there are parents who are exhausted, doing their best, and don’t recognize the danger in a situation , don’t see all their options.  I have been such a parent, and I have been judged for it.  It’s an extremely painful experience for an overachiever –  I highly recommend it for personal growth.  Many wonderful, thoughtful, invested parents have made these mistakes.  When we walk away from such a situation, in a cold sweat of relief, we know we are lucky.  When we do not walk away, when our child is hurt or lost to us, we never completely recover.

This week a friend of mine had to take her son to an institution to be cared for, because he became too difficult for them to manage at home.  I have not had a chance to talk to her yet, but the words she uses to write about it are painful poetry to me.  Here is a link to her own words:

http://archive.aweber.com/marriagemoats/CaC3j/h/Marriage_Moats_How_Much_is.htm

Thinking of my friend Lori, I remember a shocking experience I had, many years ago.  When speaking of her son and her challenges to another friend, that woman responded contemptuously, scornfully.  That boy could not really be called autistic, she said, because his mother was really to blame for his condition.  She told me of something that the mother ought to have done at her son’s birth or before (a shot? a test?) and the not-doing this thing had, in the speaker’s mind, been the cause of the boy’s condition.  This was not a case for compassion, apparently.  She saw stupidity, and knowing nothing of the situation intimately, she felt anger and laid blame.  Perhaps this was her way of voicing her sense of helplessness – to control life’s frightening things.  If someone is to blame then maybe there was a way to control it… to make bad things not happen…

What has been circling my head all this morning, to which I am applying my 52 years of wisdom, is the puzzle of judgment and criticism, and maybe luck, or knowledge.  I have more than once listened to people (parents, women really) speak sneeringly of other mothers’ or fathers’ mistakes in a way that freezes my blood.  I always identify with the ones called “stupid.”   But today I saw that I make those kinds of  impatient, contemptuous statements myself.  For instance, when I see a small child walking or running behind their parent/s in the parking lot, the adult not holding the child’s hand.  When parents have their kids out late at night at the stores, and then speak in an angry and ugly way to their whiny children.  I am critical of things like that.

Obviously, Owen has more work to do on me.  And we’ll order that location wristwatch device and hope Owen feels like wearing it.

https://www.autismspeaks.org/wandering-resources