Past Posts for the embracingchaos blog

 

Wuv – first published on Weebly 1/3/2015

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Owen likes people in general. You would never know this unless you make a careful study of him. His body language doesn’t reveal it – unless you know his body language well.

For instance, when you read aloud to Owen, he often turns his back to your voice.  And yet he may wear an intent listening expression.  If he isn’t interested, or can’t relate to what is being read, you won’t wonder – he’ll be gone.  When words do not have meaning for Owen they seem to be just annoying background noise.

What usually makes meaning out of noise is having forged some kind of connection with the speaker (or the text).  Owen likes stories best that he has heard before.  And if Owen doesn’t know you, he will seem not to even hear you.  So I introduce him to people by touch – I have him touch the person’s shoulder and say that person’s name.  And his own, if he will.   Even though this is carried out hand over hand, it still has power for him.  It seems to help to build connections.  And Owen seems to want these, even though he will not build them for himself.

Over the holidays I made a point of having Owen say “hello” and “goodnight” to his numerous family members as they came and went – he wouldn’t do it on his own, and yet I see that he likes to.  He smiles, sometimes he hugs.

Last night we had Owen give his Christmas presents (he gives warm socks) to the family around the table.  It was great to do it like this, separate from all the hubbub of general present opening.  I plopped each pair of wooly socks into a wrapping bag and directed him toward the person he was giving to, and he delivered it smiling.  Please understand that I would love to have Owen more involved, making the choices, wrapping his presents. So far his brain doesn’t work that way.  But what is amazing is how much pleasure it gives to him, and to the recipient of the gift, even though I have been so involved in the process.  Like the prosthesis that allows an action.  That doesn’t seem to matter. It still feels like love, like connection, to everyone involved, and Owen grinned sleepily all the way through the little ceremony.

I have seen Owen grab the hands of his siblings (this particularly when they were younger) and pull them together into a group at a crowded gatherings, such as his school open house. He likes to have his peeps gathered close together, where they belong.  He may eddy at the background in most social situations, his focus seemingly on the current beloved object in his hands, but you know a happy eddy when you see one.  He smiles, pleased in his way to be part of the group.

Sometimes unexpected people get Owee-love.  I have seen him cross a room and bend over to place his wet mouth on the forehead of a man who was kneeling on a rug at my sister’s home, telling us of a stressful holiday experience.  We were all startled, but the man (a person of more than average grace) cried out, “I feel like I’ve been blessed!”

I have walked through a crowded church reception hall guiding Owen, and had him pause to lay his face on the neck of a woman who responded, “Oh! I needed that today!”

Sometimes he just hands out hugs, as he did this past Sunday after church.  Before I caught up with him, he had apparently woozled several congregants known and unknown to me.  I have learned over the years that Owen knows who he is loving.  They are always people who know how to hear it.  Sometimes they are surprised, a little nonplussed, but they know wuv when they see it.

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Dark Walk Before Solstice – first published on Weebly 12/21/2014  

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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.

 

A Tribute – “Bits” Revisited – first published with Weebly 12/10/2014

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little brother Oskar wears symbolic “bits”

 

Last winter Owen’s big sister Bronwyn was composing her portfolio for art school applications.  She had to create a three part sculpture requirement, and came up with the concept of describing Owen and his obsession with breaking things down into bits.  Bronwyn worked for months making the component parts.  She planned to describe her concept in both paper and in ceramic beads.

Younger brother Oskar was drafted as model.

Osk tolerated being glued with strips of paper–

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and then buried in a mountain of ripped magazine strips.

After this, he was draped with beads that Bronwyn made, painted, fired, and strung —

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to symbolize the artist’s perception that Owen’s fascination with “bits,” or his obsessions with substances and sensory perceptions in general, are a weight on him, something he cannot escape, something that confines him.  If I understand these sculptures correctly, they are intended to show how Owen’s obsessions not only consume him but also cover him up, so that many people only see the obsession and not the boy. 

Ripping paper has not been Owen’s obsession lately.  But a few years ago he could spend hours crouched on the floor ripping newspaper or magazines into long, thin pieces. He filled cardboard boxes and trash cans.  Finally, we went to see Owen’s doctor, and the behavior faded away.

Owen was not consulted about Bronwyn’s portfolio pieces as far as I know.  Since Bronwyn is a night owl, much of the staging and photography took place after he was in bed.  If he had watched I think he would have been highly amused by it.  And, maybe, kind of envious.

Walking With Freya  published at Weebly 

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Owen’s little sister Freya came home from college for Thanksgiving break.

Owen likes to grab Freya’s hand and take her places – to see things, to help him get movies, or go out to admire his bits of stuff collection outside.
Owen doesn’t talk much, but she’s a good listener.

While on a walk in the woods near our house, she hears Owen murmur, “He was…he was dead.”

Goodness.
Who Owee?” asks Freya.  She’s a reality show kind of gal anyway, but this statement had all the zest of the unusual.

“Who is dead?” she urged.

Humpty Dumpty.

Relaying the story to me later, “I really never thought of it that way,” says Frey.

Does Owen know what death is? Makes me wonder, how much is he understanding and just not letting on??

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Thanksgiving Stuffing – published at Weebly 12/1/2014

20141122_172944_crop  Owen eats a “Paleo” diet.

At least, that is the easiest short-hand for the “Specific Carbohydrate Diet,” described in Elaine Gotteschall’s  book Breaking the Vicious Circle.

At home this is all very familiar – Owen has been eating that way for about a decade, ever since a doctor suggested it in 2004.  I feed the whole family a mostly-Paleo diet these days, since it helps with a variety of mental focus and health issues. But the rest of us can get away with cheating while Owen really can’t.  Grains of all kinds irritate him. And white potatoes. And white sugar. And milk. So we eat lots of veggie dishes, meat, fruit desserts, and nut flour pancakes, desserts, and cookies.

What is familiar at home by now becomes problematic when we go out to eat with other people. The whole world has developed a fondness for and dependence on grain eating (and potato and white sugar), to the exclusion of all kinds of other interesting vegetable carbohydrates.  Very few people have learned to love mashed rutabaga or, say, mashed turnips.  People like the uncomplicated mashed potato and don’t appreciate you messing with their beloved holiday dish.

If you are making ground cranberry relish, people may sigh when you sweeten with honey instead of white sugar.  Or, maybe worse, they shake their heads at your suffering, offering you the rank of saint and martyr for giving up (or making any effort to give up) the insipid, unchallenging flavors of classic American cuisine.

But what does Owen say about all this?  What does he think about his diet? Owen loves nearly all foods.  And like most other members of the human race, he would happily eat any morsel of bread or chocolate, without much concern for where it came from, or how it was made.  Particularly if it is a choice between that and not getting any.  They say any of us is only three days-without-food from stealing …

Every now and then, Owen says something like, “A donut.”  When I fry him up an apple ring in butter and cinnamon, fragrant and more delicious than anything Dunkin’ has to offer, and without the headache afterwards, he isn’t too impressed.   I understand.  When you have a craving you have a craving. Still, my kids concur that every look-alike that I have made for O. has tasted more flavorful than the thing that I was copying.  And now we have joined his way of eating and feel so much healthier for it, instead of him paying the price to eat ours old way.

There are, after all, such a great variety of foods in the world.  I am very thankful.

Happy – first published at Weebly 11/23/2014

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Have you seen the video for Pharrell Williams’ song “Happy” covered by the band Walk Off the Earth?  Owen’s big brother Daric is a musician, and sent it out over FaceBook.  As soon as I saw it I knew I had to show it to Owen –
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The song itself is just the kind of thing that Owen responds to – the beat, the unusual voice tones. Walk Off the Earth adds their own kind of humor to Pharrell’s song – those guys enjoy deadpan silly.  If they were setting out to amuse Owen himself, they couldn’t do a better performance.

So far he has only watched it a few times. For Owen to really digest something verbal, familiarity is key.  I look forward to the video to him again.

I love to see him get happy.

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Listen to one of Owen’s brother’s bands, FatMan Catbite,  at:    https://www.youtube.com/user/fatmancatbite

 

ASKING – published with Weebly 11/22/2014

20141116_122105_crop2  Ever since he was a very little guy, I have tried to encourage Owen to ask for what he wants.  If I have the patience.
If I don’t get too distracted. If he can find the words.

Owen’s therapists stressed the importance of waiting for those words. So I try to ask, rather than simply pile food on his plate.  Owen doesn’t complain about piling of food – the boy is a bottomless pit.

But since one of his most annoying problems is a lack of sense of boundaries or property (as in yours), I want to encourage him to ask.  To recognize his wants and communicate them.   Now that he is older there are foods he prefers to others. I want him to know that his plate is his, his belly is his, and that I will not just stick food there without first finding out if he wants that food. Rather than sitting like a passive blob, or worse simply grabbing what he wants and making off with it, I want him to ask for things.

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Owen knows this. The “use words” game is familiar territory.  20141116_122118_cropI put my hand out, and he places his hand on it, as if by touch we could get something started.  Locating words and getting them going down the pipes to become speech is hard work for Owen.  But as the therapists have always said, what you do not use, you lose.
Owen makes his own surprising forays into speech, sometimes using his whole arm and hand, as if the words were going to travel down it from his head to the listener’s ear.  He will arch his arm over the space between, his hand and fingers together like a ballet dancer taking position, while he tries to communicate.  Sometimes “I need a drink.”   “A carrot.”  “Could I……”  Or something more mysterious, such as “He’s a James.”

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High five for communication

Away from home, in a new place, or a big crowd, Owen naturally sinks into the background.  We forget to ask, and he finds it much more difficult with all the distraction to locate any words. He’s happy to just keep on eating whatever people give him, and snitch whatever looks good that he can lay fingers on. Last Sunday it was a ripped sugar packet, during a family brunch in Baltimore’s B Bistro.  His sister Freya squealed on him before he could get many finger-swipes of white crystals off his pants…

Laundry – first published w Weebly 11/

20141113_112625I love my laundry room.  So does Owen.  It’s warm, sunny… and full of interesting bottles.  Owen prefers the plastic to what’s on the inside.  Every now and then he goes through a phase of emptying them of their unnecessary contents to get to the good part.  He’s always very sorry afterwards (well, he looks very sorry), but the appeal of those bottles is just too strong.  Resistance is futile. He must empty them and face unpleasant consequences.

So now we have hooks on the cupboard doors.

I probably should teach Owen to help wash his own clothes.  We talked about it at the Individualized Education Plan meeting years ago.  As a first step I have him stripping off any wet sheets in the morning and carrying them down the hall.  But I sort of hate to draw his attention to the box of laundry powder.  It isn’t in plastic, just boring old cardboard, and has so far been able to sit out in the open, untouched.  Flying under the radar…

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Every time I turn the dials and hot water pours out into the tub below for another load, I think of what my life would be like with Owen 100 or two hundred years ago.  I see myself with a wooden paddle and an iron pot over a fire in the back yard – carrying, wringing, and hanging heavy wet clothes – hauling buckets and buckets of water.  How many, many women spent hours just this way? Whew!! I am so lucky!

And Owen is too.  A hundred plus years ago someone like Owen would have been grubby and damp much of the time.  Pretty miserable. The work that goes into keeping Owen in clean clothes is well worth it (thank you Alva J. Fisher and Thomas Edison!) beyond comfort, because clean laundry allows him to be part of everyday life with all the other people.  If he were smelly and damp, he would have to live his life out hidden away at home.

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