Drained

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Over the past two weeks Owen’s sisters Freya and Bronwyn packed up and left for college. And this year even his little brother Oskar is packing up, going away to school in Pennsylvania.  All week there have been suitcases.  And mom crying.  Luckily most of the crying isn’t when Owen is home.  His program continues, he catches his van at the end of the driveway in the morning, and arrives home at the end of the driveway in the afternoon, just as always.  Who knows what he does in between.  I am pretty sure his program is very boring.  For now I just say a prayer over him, and put him on that van.  For now I need someone else to keep him, so I can cry and help everyone move out.  So I can process the thought that frightens me – being left alone eventually to care for Owen.  Caring for him each morning and each night, and each weekend in silence.  Our meals in silence, his busyness and intensity in silence, calling for him and hearing silence, without any of my comical and tender Simonses to make it funny when it isn’t, without that support group of “we” to share the really funny, or tender, or surprising things that happen in life with Owen.  That’s what I have been afraid of since Owen was about 5, when I began to realize my baby wasn’t growing up.  That’s what I lived one summer, alone with 11 year old Owen at a clinic in Atlanta.

But I want my children to go, and to grow.  Oskar has been a wonderful last kid to have at home these past years, sharing the chores and telling us about his day – we thought we’d be unbearably lonely without the girls, but we adapted, and there was great satisfaction in being four.  Now Osk has other fish to fry.  He has grown too big for his nest.  He must shed the old skin, and find out what lies beneath.  They all need to get out and explore. I hope all my tears are not selfish, I tell myself, as I fold towels, help carry boxes, and iron name labels against Oskar’s will into his pants and shirts. I hope I have loved them for them, not as slaves to do my will.  Not just as a security blanket against being alone.

Late yesterday afternoon, exhausted from crying and nonsleep, I took Owen and the dogs for a walk in our woods, when I should have been making supper.  My tired husband began to cook for us, and I wandered out into the woods still lit up golden in the dying sun.  Owen was happy – his wonderful Wednesday afternoon sitter Kathie had taken him to the Goodwill, and Owen picked out a Ken doll and Halloween bucket there.  Ken’s arms were in Owen’s pocket, and he grinned for all of these reasons.  He held Rascal the dog’s leash, and we walked the dogs over the familiar paths, over the roots and mud.   The woods were darkening with the coming night; I knew we should have taken our walk an hour sooner.  But the huge brown trunks of tulip poplars drew my eye upward, and way, way up the sun glowed in leaves gorgeous vibrant living green against the blue sky.

This morning, as I soaped Owen up in the tub, his gesture drew my attention to a tiny bit of wood floating in the water.  Owen reached under the water, focused on picking up that tiny bit, and I stared at it too.  Life slowed down in that moment … water swirl… light shine… and the bit, Owen’s fingers under it.  It’s the small things, the details, that Owen notices.  That’s his gift.  He doesn’t see or understand the big picture, but the tiny things – the tiniest wood chip.  A bit of leaf.  A bit of trash.  The simple rhythms – of taking apart, but also putting things away. If something has a box, he wants to put it in that box.  Well, sometimes.  Maybe this helps him to make sense of a world in which people come and people go, and he may not know why.

There’s something peaceful there.

Starting next week it will be Edward, Owen, and me around the supper table.  Just Edward and me to share the chores – cooking and the clean up, the bathing, and dressing, the watching of Owen, the doggy walks and gardens and closing up the chickens at night. Just three of us on a weekend outing.  It will be lonely at first, but probably it will be ok.  And at least as Edward said last night, suddenly there are a lot fewer dishes to do.  What we cannot see is all the ways that Owen may grow to help us, that we may all help each other.

There is something more, behind this week’s tears.  There are always more layers.  Someday there may be just two, Owen and me.  This is surely the scariest thought of all, the root probably of my grief in this week of leave-taking.  But if Time calls Edward to leave an old tired out body behind, I wouldn’t want to stop that flight of freedom either.   You love people, and do not want to hold them too tightly.   Actually, you do, but you don’t.  And so when the moment comes, you will let them go, trusting that your paths will entwine again, later on.

For each goodbye, always there will be crying.  And then — then there will be the light swirls, the bit of something to draw your eye and hold your attention, suspended.  The gorgeous golden green alive in the tree tops, if I just tip back my head, and look up.  Breathe.  Smile.  And hold Owen’s hand.                                                      IMG_1331

Birthday Contemplations

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Owen tries on a helmet during his birthday shopping outing

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 30th 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

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