Naughty – or – Nice -?

wystansimons9 Comments

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Looking back on it, weeks and weeks before Christmas, Owen was clearly getting ready for the big day.

He was with his sister Freya in the bathroom, attending to business.  This is where Owen says most of his interesting things. Owen said:

“Santa Claus.  Be nice. Be naughty.”

Freya was amused.

“Yep, be nice, Owen!” she laughed.

“Be naughty,” Owen said, all seriousness.

She felt the need to correct his misapprehension.

“Be nice for Santa!”

“Be naughty.”

“Owen. Be nice,” she insisted, wondering how long he would hold out.

“Be naughty,” said Owen.

 

This went on a while. I imagine Owen got the last word.

He must have been thinking about it a lot – almost everyone in the family was informed.  Words don’t come easily to Owen, usually it’s an effort to bring them forth.  When he really wants to drive a point home, he has a particular manner of speaking his few words, with his eyebrows way up and eyes wide open, his head tipped to one side, informing, admonishing.  “Be naughty!”  When Owen does this, he reminds me just slightly of my dad, when he wanted to emphasize something.  Owen’s grampa was a college professor who taught decades of Composition 101 classes to recognize good grammar and punctuation.  It’s funny feeling, when you recognize that a communication that is clearly of great importance, and you still have not the slightest idea what it means.. I imagine many college freshmen felt just the same way.

Maybe Owen sensed he wasn’t getting through to us, because once or twice in those weeks before Christmas he growled into the kitchen in his Ogre/Papa Bear voice, “BE NAUGHTY!” 

I wondered why this focus on the “Santa/be naughty/be nice” thing this year.  I was inclined to blame the group of older special needs people with whom Owen’s rides the van to his program each day.  They can be sweet and friendly, but they are kind of tough on codes of behavior.  If Owen is passing gas or burping they tend to get grossed out.  Giving his safety belt the slip is a moral issue.  I get a solemn report: “Owen was Bad today.”

Coming face to face with the culture of shame and blame surprised me.     A more innocent group of adults you really could not find, except maybe on another van full of special needs people.  They were just repeating what they had heard.  Still, before now, I had only experienced Owen’s school mates treating him with affection.  The transition to the real world has been a little hard. I have to laugh at my response, defensive for my perpetrator –  like a mom in juvenile hall — “Yeah? he passed gas!  SO?”  In the Simons household, the standard method for dealing with breaches of etiquette is humor.  Ours is a jolly and forgiving God.  Like Santa.

Morally speaking, I consider Owen pretty innocent.  Then again, nothing cracks him up like doing something naughty, or hearing someone else getting reamed out for doing something naughty (the dog, his little brother).  The people on Owen’s van had good reason for hoping he would shape up for Santa.  Instead they may have inspired a whole new level of naughty.

I guess I missed my tip-off.

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On Christmas morning, I came down feeling clever and rested.  I planned to finish the stocking stuffing early that morning while Owen was in the tub, rather than staying up late Christmas eve.  But a large pile of papers beside the Christmas tree.  Candy papers. Translucent papers from maple sugar creams.  White plastic peanut butter cup wrappers. Clear plastic wrappers.  Half a bar of raw dark chocolate, gnawed, abandoned.  And four tangerines, each with one bite from the center.  Owen, rising earlier, had clambered over the barricade we built on the landing, and poured out his siblings’ stocking candy out in the dark living room, and eaten it.  All.  Four stockings were flat and empty.  He didn’t touch the parental stockings.  The whole thing reeked of intentionality.

For some reason, Owen had never thought of this past Christmas mornings.  Maybe he had and lacked sufficient daring. I struggled with shock, complete outrage, and feeling stupid.  How could he do such a thing?? My plans for this morning were broken.  Owen had “scribbled on my page” and I reeled like a preschool child.  Scolding and fussing, waking the household with my rant,  I put Owen into a tepid bath.  I reflected that I would never be able to write about this event.  I would never find anything Owen did to be funny again. Probably I would have to stop writing.  Unable to go forward, I left for a healing walk in the woods with the dogs, kindly accompanied by my daughter Bronwyn.

The walk was a good idea.  I cam home to find my husband re-stocking the stockings, divvying up the parental stash between the three other kids.  Daughter Freya was making Christmas breakfast.  Smells of bacon and cinnamon filled the air.  Oskar was setting the table.  I made Owee apologize to each of his siblings, and we went on to enjoy a lovely Christmas together.  Owen was pretty quiet.  His tummy can’t have been feeling too good.

 

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Well.  No one can say he didn’t warn us.  And at this point I can see the humor in it.  But I’m not telling the people on his van.

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Christmas night, Owen re-lives his day’s misdeeds…

 

 

 

Dark Walk Before Solstice

wystansimons4 Comments

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Owen loves to walk, except when he’d rather stand. He can stand for a long time, his back to me, totally still, pensive in the cold winter woods.  But thinking of what? seeing, hearing what?

Usually when Owen and I walk we take the dogs, who always need exercise.  But the dogs don’t do pensive.  They pull my arms out of my sockets rushing forward, particularly times like tonight, when Owen doesn’t want to move.  I wind up frothing at the mouth and frustrated, and my irritation becomes a flood of words pouring out my mouth into the space between me and my silent son.

Owen’s kind of humor, his language, the insights he brings, are fragile things.  They are easily lost in any commotion.  Like a reflection on the water’s surface, agitate it and you have only bits of random movement.  You miss the whole thing.  Owen seems incapable of thought, lost, vacant.  I hate it when he looks vacant.  And hate it particularly in the hateful mood I find myself in tonight, yanked forward by impatient dogs, detained by my unwilling companion, unable to move.  Then something precious is lost between the pulling dogs and the winter darkness falling outside and within.

I want to choose the way it will be: two of us walking side by side, enjoying nature, enjoying each other’s presence, dogs rambling in front.  But the dogs go in circles or strain suddenly forward, and Owen stops and lingers on the trail behind.

I want it to be that Owen, although a different soul, has things to contribute, isn’t too difficult to care for, laughs and smiles if he doesn’t speak, has a quirky sense of humor. But dark nights such as these press upon me the truth – that Owen doesn’t always respond at all, doesn’t laugh or speak, or understand my speaking, is sometimes distant as Pluto and cold as the moon.

As we come up the pathway to our warmly lighted porch I realize another truth:  in my frustration and hurry today I closed the doorway to language of all kinds, eye, face, and tongue.  I have been busy and focused elsewhere lately, not making any space for communication to happen between us. Communication for Owen will always require support, the best support simply tuning IN.  Stop stirring up the waters, and wait, believing that there will be something there to see.

What was Owen thinking about tonight?  Was there something he wanted to tell his grousing, criticizing mother back there, when he lifted his face up to hers for just a moment, coming down from the darkened farm field and the wide winter sky to our street?  His mouth opened, just slightly amused, eyes suddenly engaged, he seemed to search for words he could not find. Maybe It’s ok Mom – relax! Or Calm down – do not be afraid.   Or I have a stone in my shoe…?

I’ll never know.

I pulled on his sleeve and we came down the hill, home.

First published on Weebly, December 21, 2014. 

Ungrateful

wystansimons1 Comment

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We were home for Thanksgiving this year – and good thing, since I spent most of the week sick, lying in bed.  I had planned on connecting and creating with my children home for the holidays.  I had planned on building a garden with Edward, and attending a musical downtown, and cooking a few nice meals.  Instead I rested, and scrolled grumpily through people’s FaceBook postings about what they were grateful for, at a loss for what to write.

Owen was having a vegetative week himself, less communicative, less sparkly, and every bit as mulish and early-rising.  I’ve said that I write these postings to share our life with Owen.  I’ve said their purpose is to allow outsiders a peek into what it is that is subtly wonderful about a kind of person and a kind of situation that many regard with sadness or disgust.  This implies that I feel grateful for Owen in my life.

But some days you’re more inspired than others.

As I lay on my bed, scrolling ungratefully through grateful postings of lists of gratefulness, the task of finding my voice this Thanksgiving week seemed harder for the public outpourings.  A little public gratitude goes a long way, I thought.  Even if I could find the right words, what use to throw them into the din?  Perhaps it was just my prone position that made me sour.

Tomorrow my niece gets married to the young man that she adores.  And Owen will be there, to generate inappropriate noises, and fidget, and generally bless the occasion with his presence.  Nothing that he does in such a public setting is likely to be cute, or clever, or to provide any window into his inner Owen.  But we who care for him know an angel lurks there under that unlikely exterior.

And as with the grain of sand and the oyster, the pearl generated is worth the irritation.

Is the oyster grateful?

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P.S. I was extremely grateful for my bed.  Also for my husband, a true partner in times of trial and a good cook.

 

Words Again

wystansimons8 Comments

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“A boy,” says Owen and mom high fives him.  After a long period without any words, words are so good to hear.

We are getting dressed again.  Owen’s custom is to remove all clothing for his most productive encounters with the toilet.

“A boy?  What’s his name?” I inquire, trying to encourage him, to keep the lanugage going.  I pick up Owen’s shirt.

A look of pause.  Blocked circuit.

“Jack?  Jack in the beanstalk?”  I ask, bending to retrieve Owen’s undies.  Undies are first off, and so bottom of the clothing mound on the bathroom floor .  I look into his face.  “Or is he Owen?  Is the boy Owen? Owen Simons?”

“Jack in de Beanstalk.”  He stretches his arms out across the small bathroom, wall to wall.  Communication.  Who knows what he really wanted to say – and he has probably only echoed me.  But he said something, and I understood the words.  That has to feel good.

A week or so later, Owen comes up out of his morning bath full of words!  Nouns!  pouring out of him as the water runs off his body –

“A hit.”

“A hit.”

“Lemons!”  “Lemons.” (Owen has been eating lemons…)

“BJs”  (did he really say that?)

“A baby.”

“A boy.”

“Johnny.”

“Johnny Appleseed.”

“A pumpkin.  A pumpkin.”

“Jack.  Jack in de Beanstalk–”

There are many more.  I try to commit them to memory, no paper or pen here to capture them. My brain is reeling, trying to make meaning of them all, trying to hear them, and him.  Owen seems as surprised as I am, his eyebrows raised, riding the tidal wave of words – a stream of nouns, of thoughts, of statements perhaps.  There is an urgency to the way he delivers them, quiet emphasis, as if, the gate having opened, he has this chance now to tell me – everything!  Some words I have never heard him say before this moment, some are familiar old friends, and just as mysterious now as they were every other time he said them.

What is he trying to say?  What flipped the switch so that he could access words at this particular bath time?  It seems important to enjoy the gift rather than worry how to interpret it or how to make it happen again.  Owen’s body is a complex malfunctioning machine that neither he nor I can control, either by desire or environmental management.  I spent a lot of years trying.  Trying to understand body rythms, and words. Writing pages and pages, words filling journals, longing to understand so I could control my child.  Sanity was to let it go.

Whether I could understand or not, I loved this bath time outpouring.  I hope it happens again.

Just in general, words can be good or bad.  It’s been difficult falling into this fall, with the decreasing sunlight, and the emptier house.  My frustration level tends to run high. My emotions generally run to words coming out my mouth, or onto paper.  Life in the care of a nonverbal person can be lonely.  Caring for a nonverbal person who’s feeling mulish is lonely and irritating as well.

I feel sorry for my neighbors these afternoons, as Owen and I and the dogs try to get started on our quasi daily walks.  We have trouble making it down the sidewalk, then the driveway, Owen stopping, balking, the dogs pulling in every direction, their leashes wrapping our legs.  A dramatization of my mental state – stuck, tied, trapped. The words flying from my mouth are complaining and cross, and they grate on my own ears as they rise up out of my psyche – bitch, bitch, bitch.

Walks like these ones start out rough.  But generally they end pretty mellow, thanks to the influence of trees and moving air, and sandy dirt under our sneakers.  Thanks to the silent communication bodies make, moving in the same direction, a tacit unison of muscles and bones.  Thanks to the blood circulating, wordlessly, carrying away the tired old from the cells where it was stuck.  Clearing, cleaning. Stuck is bad.  Movement is good.

And words are good.  Mostly.

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Owen Meets the Police

wystansimons5 Comments

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It was another gorgeous July day in Boulder Colorado – the day after Owen’s brother Scott’s wedding in fact.  Owen’s mom was busy in the kitchen. Owen objected to his mom being busy.  Or — was he was inspired by it?  The more frantically she was getting ready, the more busy he was likely to be himself.  This morning a post-wedding brunch was planned, but no one had talked to him about it.  All Owen knew was that he had spent a lot of time sitting yesterday, and he wanted a walk.

He slipped out the front door of the rental home his family was staying in. The quiet streets of Boulder beckoned, shaded by the lofty and carefully watered  maples, oaks, and pines.  Owen lifted the latch on the gate to the front path, re-latched it, and no doubt he grinned as he eddied off to the right down the sidewalk.  Only a few days ago he had walked this way with his parents and his brother Oskar, out from under those tall trees, along sidewalks and across streets, through the University of Colorado campus and into Boulder downtown, with its shops and restaurants.  He liked it and wanted to go again.

Owen did not get far in his ramble, eyes searching sidewalk and curb for interesting gravel, when his eye, his imagination, and possibly his sense of mischief were captured by the green backyard of an unlucky neighbor.  This neighbor had unwisely chosen not to put up any fence.  Back Owen wandered, to forage in the gardens and leaves —alas! No recycling bin!

In his constant quest for interesting plastic, Owen entered the back door of the house hopefully.  A woman who had been used to calling this space her home was alarmed shortly after to find a young man prowling about her kitchen.  A strange young man – some dangerous, drugged up student from the university no doubt!  She yelled to her husband for help as Owee eddied out the backdoor again.  This house did not have good plastic energy.

The husband of the frightened homeowner followed after Owen, out the back door, around the side lawn, and out onto the sidewalk again.  Quickly recognizing him as a non-dangerous individual, but possibly one in danger, this man continued to follow after Owen, through the fence, across the concrete school yard, making one-sided conversation,  and hoping to redirect him.  Apparently Owne did not have any interest in re-direction.  But when the school yard gave way onto a junction of streets, the man was able to convince Owen to eddy back toward “his mother” and the quieter street away from city traffic.

What did Owen think of this poor man and woman, whose Saturday morning lives he had invaded?  Owen’s mom wishes she knew.

A few doors down that Boulder street, Owen’s mom had all hands on deck chopping fruit and vegetables and making iced tea for a wedding brunch.  Owen’s dad was out buying a few groceries.  Owen’s sitter, his cousin Rachel, had been given a much-deserved sleep-in that morning, after her long day of Owee maintenance at the wedding and reception.  Owen’s mom was just asking who had seen Owen last–?  Her internal Owen-o-meter was sounding.  This rental house was big, with a generous yard to explore, and was fenced wonderfully with a series of latched gates.  Plenty to keep Owen busy.  But why did she feel uneasy?

Her unease changed to irritation as she learned that no one could find Owen, upstairs or down, nor did he seem to be anywhere in that wonderful fenced yard.  Why today? How can he always tell the worst possible moment?  She thought, expressing her worry and uncertainty as anger, in her usual manner.  You just never knew when he would be calm or not – but guaranteed at the most unexpected moment —!  Indecision made her crosser.  She knew from long experience that these rare and sporadic wanderings could either result in a quick catch, or a protracted search – but either way you never knew which direction to head out of 360 possible degrees.  Owen was never far off…so far… always turned up right nearby…but never came when called, even if he was right there behind a tree the whole time.

Arriving downstairs to find chaos in their midst, cousin Rachel sprang breakfast-less into action.  Luckily for her aunt, she had an existing interest in and experience with caring for special needs people.  And maybe hours spent with Owen in days before had developed her Owee-senses.  In any case, her Owee-senses seemed to be tingling.   She headed out the front door, toward the gate, toward the sidewalk.  She found the gate latched, but stepped through and as she wondered what to do next, caught a snatch of conversation between two passersby, “I don’t know who he is!…”   That clue was enough to send her off to the right—

And there down the sidewalk came Owen!  A gentleman followed him, and explained that his wife had called the police.  Two police men were on the doorsteps moments later, and Rachel called Owen’s very relieved and irritated mother out to the porch to receive a routine lecture from the officers reminding her how important it was to “be careful.”

Was it worth it to Owen? All that effort – so little plastic discovered.  Really, his mother wanted to point out, there was much more opportunity for dumpster diving back at the house, with all the trash they were making.

But how can home stand up to the joy of the open road?

Later on Owen’s mother went to offer thanks and apologies to the kind neighbor man and for want of anything better, offer him the groceries her family would not be able to eat before departure.  It wasn’t hard to guess the house – the one without the fence of course.  She sighed and turned into the side yard to find the neighbor at work watering his trees and lawn. She thanked him.

The man responded as if he had been waiting for the opportunity to speak , at pains to impress upon this boy’s mom the danger of the situation – did she understand? The busy road beyond the school yard! the police! Owen’s nonverbal state!… He had thought of an idea for future however – a hospital bracelet!  In such a situation a hospital bracelet could provide the needed information and save a lot of trouble.  What would the police have done with the boy if they had taken charge of him?

She thanked the man, and left, groceries rejected.

He seemed like a kindly man, she thought , lowering her shoulders, taking deep breaths as she walked back.  A hospital bracelet.  Could it be that simple?  It would all depend…How to explain to someone like this kind gentleman that Owen loves scissors?  Also that Owen is a free spirit, one who takes pleasure in defeating efforts to be contained?  That his cognitive abilities, scattered most of the time, can come into focus when being (A.) denied access to or (B.) denied egress from?  Suddenly and unexpectedly, he can be very creative, and very quick.

There really is no way to explain Owen, she thought.

*                                 *                            *                          *

At home again, Owen’s mom and dad returned to their research on location devices.  What looked like the best choice said its wristband could not be cut with scissors.  It said it was completely waterproof.  It had GPS tracking and a radio signal.  The customer comments were mixed – some people said it was too big to even use.

Weeks later, a location device arrived by mail.  Owen’s parents opened the device package with excitement only to be disappointed.  It was HUGE – absurdly big for Owen’s thin wrist.  Owen would never wear that, his mother thought, and feeling defeated already, she left it in the packaging on the counter.  The whole thing felt too heavy to think about.  She only hoped she would have the intelligence to return the stupid gadget before they couldn’t get their money back.  It seemed demeaning to her.  In truth, she hated the giant black thing, and all that it symbolized in hers and Owen’s lives.  Her hopes had been raised and dashed.

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But Owen’s dad although mellow, is made of tough stuff.  With determined bulldog-ish optimism, he put that location device on Owen’s arm.  Owen seemed ok with it.  Owen’s dad began the process of registering the device online, testing it out.  It did not work.  Still, he figured, Owen may as well wear it and get used to it. He contacted the company for help.  Finally, he practiced “locating” Owen on the GPS map on his computer.  He showed Owen’s mom.  She began to feel to feel tentatively hopeful.

She showed Owen her watch, and then put his massive watch on him.  Owen seemed ok with it.  He kept it on.

After some false starts, Owen’s dad was able to locate Owen regularly, and know where he was went with his adult day care program.  Owen’s mom texted one afternoon, “Where are we? Can you find us?”  Owen’s dad could find them.

Owen’s dad is a pretty great guy, in his wonderful bulldoggish way.  Owen’s mom’s hero.   And the next time Owen meets the police, he can show them his really cool new watch.

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Dreams

wystansimons4 Comments

 

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Hi Wystan! I had a very vivid dream last night about Owen! We were having dinner at your house and it was conveyed by Owen that he wanted everyone around the table to say something about him. As people said something like: you have really cool hair, or you are a really great guy, or I like the way you help set the table and so on…his head came up, he made eye contact with each person, smiled and then slowly and gently started having tears roll down his cheeks. Of course, we all started silently weeping too…After that was done, we all began to talk at once and eat but Owen stood there and just smiled. I don’t know what it means or if it should mean anything but it has left me very moved and I keep thinking about it since I woke up. Please share this with Ed. Hope you folks are doing well! —Jim

When I began to fall in love with Owen’s father, the chance of our having a handicapped child was the farthest thing from either of our minds.   Wasting no time, like the two people who had seen too much of the dating scene, we handled the important stuff right from the first date: God and air conditioning preferences. Romaine lettuce over iceberg. We shared eccentric relative stories, family histories, memories of special lake vacation spots.  But even though I had a special needs brother and Edward had a special needs brother, the idea that we might one day be blessed with a special needs son simply didn’t make the agenda.  Amazingly that subject never came up.

We may not have prepared ourselves, but some other force seems to have been preparing me. Near the end of the four seasons while Edward and I fell in love and decided to marry, (I in grad school in Illinois and he in Maryland), I woke one morning in Chicago from a vivid dream.  I smiled at the sunlight reflecting on the ceiling of my room in Ridgewood Court.  Eyes open, I could still see the face of a baby.  This baby had been laughing down at me as I held him/her suspended in the air, joyfully – big red curls – a wonderful open mouthed smile.  I woke knowing that that baby’s name was Owen.

Cool dream!  It left me with a happy feeling — and I didn’t think too much more about it.  I may have thought “Wow! maybe Edward and I are going to have a red haired child!”  That wouldn’t be too surprising; Edward comes from a family of redheads.  I do remember later wishing for a curly red-haired daughter, tossing some coins into some grotto pool in Bermuda for fun during our honeymoon.

When, less than a year later, I was pregnant with our first child, we whittled the choices down to two Welsh names: Bronwyn and Owen.  Why Owen?  Did I remember the dream I had had?  I don’t know. It had to have been in the background of my consciousness at least.  When our first child turned out to be a girl with reddish curls I remember thinking that the dream I’d had must have been of her.  I remember Bronwyn’s first laughs vividly; she was a quick learner, a responsive, delightful baby.

Bronwyn had reached the advanced age of 13 months when our second child was born, a boy. We named him Owen.  However this baby looked nothing like the cherub in my dream, and I suspect had forgotten all about it. I was pretty tired and distracted by then.  Owen was a difficult fellow, kind of frail, low muscle tone, slow to develop, and always, always crying.  Months later, I am sure his first laugh was a momentous occasion – we waited a mighty long time for it – but I don’t remember it now.

Eventually little Owen rounded out, and did gurgle. By the time he was two he had juicy red curls and a cherubic face (when he wasn’t fussing).  He developed a wonderful laugh, and we did love it (or any responses from him) then or now. But for a long time I forgot that dream from my graduate student year.  Although the photo albums don’t show it, there were years of frustration with my unusual child, anger and un-acceptance of who he is, and what the situation was going to require of me.  I didn’t want to be doing that job, and the thought of being trapped spending years of my life caring for someone’s physical needs both suffocated and terrified me.

Today, as I reflect on the dream and the reality of Owen, I have to ask, what was it all about? Why did I have it?  If that dream was caused by body chemistry, love hormones, daydreams, what I ate, or other chemical factors alone, I cannot account for how that is possible.  The chemical explanation does not also explain the stories of many dreams I have heard about in which future events are suggested (sometimes to people who are not important players in a drama) or visitations made.

But if, at the other end of possible perspectives, we explain such a dream as guardian angels trying help out with a preview of one’s physical future, that still doesn’t explain it to me.  What possible use can it be to a human being to know a few years in advance that she will have a child with red hair and a cute grin?  Why would angels bother? Seems extremely unimportant in a world of human experience and suffering.  For me, any “explanation” of a dream like this must go deeper than a prediction of physical events or baby name suggestions.

But looking back on it now, from this 20 year perspective, I find I am comforted to re-see that baby face from the dream.  Perhaps the dream of Owen was preparation for hard times.  A reminder.  A sign, to look more carefully, to consider what lies within those things eyes can see.  Perhaps it was for right now, to remind me of what lies within the form of that less-than-cherubic young man I currently care for.  Getting up daily at 5 or 6 am, to help him strip his bed and climb into a bath, it’s easy to lose sight of anything larger or deeper than the physical weariness of chores in a darkening fall season.

As I prepared to post this piece this week,  I hunted through the albums still spread across the dining room table from my early September efforts to get family albums finished.  As I poured over, back and forth through pages of Owee pictures, looking for the “right one” to post, I realized I was looking for a photograph of that dream baby face.  Of course Owen never looked exactly like that dream.  And he certainly doesn’t look like that now.  That is, really, the point I say to myself.  The dream is a reminder of something so precious, something interior, that we don’t get to see all the time..

For me the inner Owen, the hidden part of him that is not described by legs and arms or his red curly hair, something I get flashes of now and then in his eyes and smile is well-described by the dream I had three years before his birth.  An angelic gin, drooling down on me and blessing my life, blessing our lives, with his bodily fluids and his presence in it.  Owen’s mental age is guessed to be very young – maybe three years old.  As he grows, the difference between his body and mind becomes more and more problematic in society – baby-men don’t fit in so well in this world.  They are not cute.  But when Owen’s body dies, I do believe his still three year old soul will travel on to the next phase of his life, and finish growing up there.

Given how unique every single human being is, given how much it takes to educate and civilize even one,  I simply don’t believe that all that remarkable individuality would be wasted on a 60, 70,80 year (or less) life span.  What a waste!  And nature as I know it, does not waste.  I believe there’s more.  In Owen’s case I expect he will finish his mental growing up in his next phase.  And since his life and mine have been so tied together here in the first phase, I really hope to get to see him in the next one.  Maybe we can get someone to explain the purpose of all he went through here.  By the time I am meeting up with a grown up Owen, maybe I will already understand.

And maybe it was a good thing that Edward and I didn’t connect the genetic dots, during those early days of our relationship.  I can’t regret our lack of worry.   It would have been too bad to go into the relationship anticipating future problems.  What could you really say?  Would I have chosen not to have him, knowing what I know now?  That subject is much more difficult for our kids, who two generations into the subject of special needs have the thought of it very much at the center of their consciousness.  Perhaps there is one real essential, when you are choosing a partner to share your life with: what do you believe about Life?  I mean where life comes from.  Whether it goes on forever.  Or stops with the end of the heartbeat?  To see all human life on earth as the first chapter of a continuum changes  what you do, and about what you put up with, after that.

Edward and I both figure this is just Owen’s first chapter, and ours too.  That thought buoys us up, and mitigates what would otherwise be unbearable sadness that this diminished life of shredding plastic and toilet accidents is all he gets to experience – and all we get to experience of him – and of life ourselves.

Is there life after life?  Do people who lived and died loving and open-hearted now as angels seek to bring us comfort? Do angels work unseen to inspire us onwards out of rage, incompetence, and melancholy?

How can we absolutely know?  And yet – we dream.

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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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Graduation – Anniversary Collage

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This July marks the one year anniversary of Owen’s graduation from St. Coletta School in Washington, DC

It hasn’t been an easy first year out of school, which makes me all the more grateful to the St. Coletta program and all that its faculty and staff offered us.  Owen and I will both keep on learning!

Here are some mementos of the day–

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Waiting for the start–
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Glad to see Dad! but…

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Owen doesn’t care for group photo shots —

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Or any photos shots at all–

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Unless he chooses them himself.

Still, we keep trying —

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Owen with his one-to-one Ciara and his teacher Paul
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Ciara and Owen had a bond. That doesn’t mean he’ll take a photo with her…

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Happy anniversary of graduation, Owen!

The Language of Laughter – Owen and his dad

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Pretty early on Owen Edward Simons and his father Edward established a special bond.  Its cornerstones are patience and humor. Owen’s dad is loooong on patience generally speaking, a trait he has had opportunity to develop during his years as father to a blended family of six with a ten year gap in the middle.  That gap probably helped, but Owen is a master at teaching patience.  For starters, as a fussy baby he spent hours hanging over his father’s burly forearm in the “colic grip,” secure and peaceful,  the heel of Daddy’s hand strategically placed in his abdomen.

Edward chooses patience, most of the time, and approaches difficult things or people with a twinkle that generally unravels situations into smiles.  He has a gift for optimism.  He likes to see things and people for their potential. He says he figures we have a guaranteed angel in the household, and even when Owen isn’t acting much like an angel that thought seems to center him.

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Thespians at a school play

Long ago Owen’s dad realized that Owen loves and responds better to funny voices or accents, and so when he talks to Owen he rarely wastes time with an everyday voice.  He has a particular voice for Owen – “He’s a little gerky guy!”  “Hello big fella!”  “Owee! what if a big shark was coming to get cha’?!”  And Owen’s dad taught Owen’s mom how to turn the frustratingly slow efforts at communication into something funny, instead.  How to get a waked up face for her efforts, instead of a blotto one.  Turns out laughter is really Owen’s best language.

I remember Edward wrestling and tickling Owen on the lawn when they both were a lot younger  – one of Edward’s ways of letting off the parenting stress I suspect. Sometimes I wasn’t so sure about the rough play, how it felt from Owen’s point of view.  I have come to know that the worst thing in Owen’s world is to be tuned out – which tends to be my survival mechanism.  Being squished into the lawn and tickled into squeals is great stimulation, a lot better than being ignored.

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Graduation 2014

One evening years ago after getting all the kids in bed Edward and I watched a rented 1995 movie, “Mr. Holland’s Opus,” both of us moved to tears.  Mr. Holland in the movie is a successful and creative music teacher to high school students, also a composer,  who struggles to relate to his deaf son’s music-less world. In the darkened foyer on our way up to bed after the movie, Edward and I sobbed on each other’s shoulders, and my husband confessed some things that I would never have guessed.  He told me about his sadness about Owen, and he whispered his shame for past feelings of embarrassment about Owen, that it was his mentally challenged son who shared his own name.  It was a very honest and powerful moment to share.

But most moments are not powerful like that, not epiphanies, nor beautiful dreams of future angels.  Most moments made of the steady day to day of washing and meal getting.  Although Owen’s mom and dad may not agree about how everything gets done, Owen can always count on his dad to be there, dressing him for his day (“Ouch – honey? do those greens go together?”), making sure he gets his nutrition, spoonful by spoonful (“Edward! he can feed himself!”), helping him change clothes one more time (“Thank you!!”).  Owen’s dad’s special undertaking is directing him through a job, like clearing the supper table, item by item.  “Look, here’s a dish, Owen. Take it to da kitchen.  Ok, come back.  Now get another one…take it to da kitchen. Ok Owen, now this one…”   Owen’s dad is the rock of the family, calm and emotionally present — except when a little nap takes him away for a peaceful moment’s rest, or he tunes us all out for some Facebook time…

So although Owen’s mom may gag over Owen’s dad’s fashion sense, and object to his tendency to spoon feeding, she and Owen are very grateful for Owen’s dad.  Lucky boy, really.  Blessed with a dad who understands laughter.

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Pick up time after two weeks at camp

 

Trailer for Mr Holland’s Opus – http://www.imdb.com/title/tt0113862/