Embracing Chaos

All Flugged In

March 4, 2016wystansimons5 Comments

As far as I know, Owen never actually said “flugged in” meaning plugged in. But I can’t swear to it. With each of our kids a few baby words crept into the Simons family vocabulary and stuck there. Owee does turn his ps into fs sometimes — so we speak that way to him sometimes, when we are trying to communicate.

This is not something any speech therapist would recommend. For as long as I have known Owen, the therapists in his and our life have been insisting that we make him reach for it – ask him to use the right words and wait for them, give him heavy things to carry to increase his strength and balance, and so on. One excellent teacher made me aware that the things Owen wears and carries should be “age appropriate” too – at 15, his backpack really shouldn’t have a kiddie logo on it, she pointed out, and we might want to encourage him to carry more age appropriate toys. (What, not the legless baby doll??) So to speak to him in baby talk is certainly not good practice. I know this.

But…it’s warm. Words spoken that way come naturally, and seem to reach out tentatively across space to make a better connection in often unreceptive ground. Owen responds to those words. So I still say, “Flug it in, Owee!” without (mostly) thinking about it, when it’s time to buckle up in the car.

The first time I witnessed Owen flug in his own seat belt, I was amazed and delighted – so proud of him! I had absolutely no idea he could do that. To this day I have no idea who taught him or how they taught him to do it. I know I didn’t. I still get a jolt of pleasure every time Owen pulls that belt over and turns to attach it at his side. He may fumble to get the vertical piece aligned just so with the receptacle, twisting his torso, curling down. Sometimes he has to hold the receiving part UP while pushing connector DOWN, since the very effort at junction can push it away and down out of sight. But he can do that. It means pulling up with one hand while you are pushing down with the other – as with so many things we do daily, far more complicated series of movements than we ever notice. But he usually can do it, if I force myself to wait, and breathe deeply. Maybe assist, if he’s having a foggy day. That seat belt “click” it is a reminder that I still do not know everything about my son, that I don’t know everything he is or will be capable of doing.

Once a long while back, my Aunt Dorothy directed me to a book called Steps to Independence, a manual all about how to teach intellectually challenged people how to do things. The author suggested it was possible for people to achieve a lot more independence than anyone guessed if you analyzed the task to discover how many pieces it was composed of, and then taught those pieces, or steps, separately, one at a time. The book was full of charts and graphs to illustrate the basic premise. I admit to not being very excited by that manual at the time I first looked through it. No manual is very exciting reading to me. And at that time I still had a chip on my shoulder about being Owen’s teacher or trainer as well as his chief cook, laundress, and bottle washer. I was still resisting; I had not yet embraced my chaos. But still I found myself using what I read there. It heavily influenced the way I work with Owen, and I still have the book. One step at a time. One simple step, building on another. Obvious. Brilliant.

How many jobs today that we do for Owen could he have the satisfaction of doing for himself, not to mention the praise and appreciation for accomplishing, if we could slow down and teach them? But finding the time (and patience) to teach them, step by step, is more difficult than just doing them ourselves. Or so it seems.

When my brother Keith was a young guy struggling with a far lesser intellectual disability than Owen, I remember how hard it was for my father to let him mow the lawn. Keith was, among other things, directionally challenged. He couldn’t lay the mowed grass down the way that made sense to Dad – he just couldn’t seem to do the job the way my dad wanted it done. Too bad Dad didn’t have the book…

Similarly, it wasn’t until my father-in-law experienced health problems and became unable to stand for long, walk far, or carry weights, that there was a place in his life for his special needs son Chuck to carry his groceries, wash up his dishes, and stand at the grill and utterly kill the hamburgers. (Chuck was famous for overcooking hamburgers, which is a sin in my husband Edward’s family.) Like my own dad, Dad Simons had been a strong, active, and able-bodied man most of his life. It wasn’t easy or obvious to him how to incorporate his special needs person into it. But the accident that disabled Hil Simons opened doors for Chucker. I think there is a lesson for me there.

It’s wonderful to be needed. It’s also not a bad thing to slow your world down enough to need help. I could probably use that reminder every day.

Flug it in, Wystan.

Saying Goodbye

February 17, 2016February 19, 2016wystansimons11 Comments

A few weeks ago something unexpected and terrible happened to a friend of ours. Our friend was a pilot, and a very good and careful one. But on this afternoon, suddenly, unexplainably, Reade’s plane crashed into the Wyoming mountains – and he was gone.

Watching his wife and children stand up in front of the huge group of friends attending his memorial service to speak of their father and husband, I thought (selfishly) of my own losses. Owen’s uncles, Keith and Chuck, who passed on suddenly and unexpectedly years ago, and Owen’s grandfathers, to whom we also had to say goodbye before we were ready. How do you cope with loss of a piece of your life?

How do you get to be ready to say goodbye?

Walking with Owen and the dogs a few evenings ago, I ambled from the fields to woods and into the cemetery of our local church. As we wandered through it, I found myself wondering idly where I might want my plot. Now, I have every expectation of living to be something like 96, as my grandmothers did. There is no real hurry to think about such things. Still, it seemed it might be nice to have a say about which way my mortal remains are facing. Over there, I thought — as Owen went in hopefully under the pine trees in search of discarded plastic — under the tulip poplars, at the edge of the farmer’s field.

I don’t have a way of explaining to Owen that someone is gone, and not coming back. I know that Owen knows who his extended family is, because of the way he acts when the great huge mob of us is together – for instance the semi-annual Simons Thanksgivings. During events involving large groups of cousins, aunts, and uncles, Owen behaves differently than say, at weddings, or other occasions with large crowds of people milling about. In general, he is more relaxed. In this way I know that he recognizes his family, his peeps, the group that belongs to him. He has some internal conceptual framework explaining why all these people are suddenly in his space. The mayhem of other gatherings is un-orchestrated noise and confusion – the mayhem of family is warmer, and something he enjoys. I think. But as far as explaining why someone isn’t there anymore, I have no way to bridge the gap between life and his understanding of it.

When my dad suffered a sudden stroke one December morning eight years ago, we took Owen with the rest of the kids and drove up to Philadelphia to say goodbye to their Grandpa. It was an unexpected, shocking event, and one of the ways I coped was to worry about how to fit Owen into that situation, at the hospital, with other relatives, their expectations, and their unknown level of tolerance for Owee behaviors in such a situation.

My father had been a man who loved order, and beauty, and peace, so the introduction of an Owen into his life was no doubt always a challenge for him. After all, he already had a son with special needs, who tested his patience fairly regularly. One of my sisters has video footage from a Gladish family reunion meal in which little Owen is massaging Grandpa’s head, face and neck in a sort of extravaganza of sensory exploration. My father looks to be cheerfully grinning, possibly gritting his teeth – he was always a team player – while the family laughs and chats about the attention he is receiving. He does not look what I would call relaxed. I never saw this encounter until I saw the footage, years later, since I was buried in the kitchen cooking at the time (coping with large numbers of people in my own way).

When we arrived at the hospital, my brother-in-law stayed downstairs in the hospital lobby with Owen while the rest of us went up to see Dad. But it felt strange to me, not to have Owen with us. Down the hospital elevators I went, and brought Owen up. His grandpa lay on a hospital bed, an oxygen mask obscuring most of his face. He was on a ventilator, and didn’t seem to be very much present, if at all. We all touched him, and said things to him, and he was unresponsive. In an effort to connect Owee to what was happening, I put his hand on his grandpa’s foot and told him to say goodbye to grandpa. But this time Dad twitched – several spasms passed through his leg.

My first response to his twitching was as if my unconscious father had said “Yuck! Don’t touch me!” This seemed like something he might have felt, in such a situation. Owen almost figures unpredictability, uncertainty, and my father was certainly no lover of chaos. I wryly smiled, imagined him thinking, “Did you wash that kid’s hands?”

But I also wondered if his twitching meant something more. Reflecting on it all these years later, I see that could just as easily have been a tremor of goodbye. My dad had a generous, loving heart, and a good sense of humor, and those traits formed a larger part of him than his desire for order, or his impatience with mental slowness or with noise. Dad did not know to say some things, articulate and urbane as he was, that Owen nonverbal and uncommunicative in a different way, says with touch. Maybe on his last day on earth, Owen’s grandpa responded to a touch he that couldn’t appreciate before. Maybe a nonverbal human is more receptive to other energy waves than those of human words through the air, or human thoughts moving through nerve synapses.

Or — maybe not. All I know is that Dad didn’t respond to anyone else. Only Owee got the spasm.

What did Owen take away from saying goodbye to grandpa? It seems so often Owen’s job with us is to be a conduit for things that he himself does not understand. He generally doesn’t understand. He copes. Earth and its inhabitants’ ways are a mystery to him. There is a kind wisdom of in that – so much we don’t know about the ones we love. Owen brought us a last experience with Dad – one last response, perhaps a goodbye.

As one who understands death – or at least understands that she does not understand it – I salute the passing of our friend Reade this winter, and thank him for bringing thoughts of other lost dear ones. Life is rich with all kinds of knowing, all kinds of speaking, and all kinds of love.

A Tribute

January 27, 2016wystansimons2 Comments

Every now and then, it’s good to take an Owee break. Even in a blog about Owen. Owen benefits from this too. Today’s posting is one of those times.

Last summer I took a book with me on vacation that had been sitting on my bedside table for months. Maybe a year. My little sister gave it to me with these words, “You might like it. I didn’t, but you might.”

With such a rave review it is not too surprising that the book sat – plus I thought it was a book about war or against war and that just isn’t my thing.

But it turns out because of this book I made the acquaintance of someone wonderful. Her joyfulness gave me joy, her honesty helped me recalibrate. She helped me get back to my writing, when I was losing the faith. And here I am.

Her name is Glennon Doyle Melton.

The first thing you learn about Glennon is that she was a mess for the first 25 years of her life. She is a recovering bulimic, alcoholic, and drug abuser, who actually looks like a gorgeous and petite cheerleader. Look for yourself.

Glennon Doyle Melton

Part of Glennon’s story is this fact – that her insides didn’t match her outsides. And how miserable that made her. How frightened she was, how vulnerable she felt all the time, and how she tried to fix that misery with food, alcohol, and drugs. And how the thing that stopped her, and so saved her, was finding that her messy life contained a life – she was pregnant with her son Chase.

Right about January or February, we all need to read a story about someone like Glennon — or really what I mean is we need to read Glennon. Because no one can tell her stories, her life, for her – I won’t try. You can hear her tell her story on this TED talk – Lessons From A Mental Hospital https://www.youtube.com/watch?v=NHHPNMIK-fY

But even better, beg, borrow, or buy her book. I will loan you my copy. It may not be for everyone, but I am willing to bet for many people Glennon’s humorous honesty will scare away those winter blues with rivers of laughter tears.

Thank you Glennon, for giving me my writing back.

Carry On Warrior, Thoughts On Life Unarmed, Scribner, 2013

Naughty – or – Nice -?

January 13, 2016wystansimons9 Comments

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.

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.

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

Dark Walk Before Solstice

December 16, 2015December 16, 2015wystansimons4 Comments

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

November 27, 2015wystansimons1 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?

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

November 3, 2015November 3, 2015wystansimons8 Comments

“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.”

“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.

Owen Meets the Police

October 20, 2015October 20, 2015wystansimons5 Comments

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.

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.

Dreams

October 3, 2015October 3, 2015wystansimons4 Comments

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.

Drained

August 27, 2015August 27, 2015wystansimons13 Comments

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.