In Spite of Myself

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I have to admit I took impish glee in writing that last post about being a cancer brat. Thanks for the great feedback, and I am happy to report a huge improvement in health and attitude.

The impish glee I guess just means I am Owen’s mother.

The season that brings out the elf in most of us seems to bring out the trickster sprite in Owen. A right naughty old elf… Longtime readers know all about Owen’s holiday antics – the infamous Christmas of 2015  (Naughty – or – Nice -?).

And he’s started early this year. (“Good grief Owen!” texts brother Oskar.) A few weeks ago I found just half the paper wrapper formerly belonging to a monstrous chocolate bar lying near my bedroom trash can. (Did he eat the rest of the wrappers too??) This chocolate bar had been in line for stocking stuffing, although of course not Owen’s stocking. It’s true that I unwisely left the bar sitting on the dedicated wrapping table set up in my bedroom. My bedroom which is supposed to be locked.  But it was buried in a shoe box full of non-edibles. How does he know?

He knows. Maybe being a mostly non-verbal person, he has developed an exalted sense of smell. An exalted intuition?

Owen knows so much more than anyone thinks he does. He knows that wrapping paper and packages sitting in shoe boxes mean CHOCOLATE, or at least SWEETS. Duh Mom. I think he swung through our bedroom a couple of more times, picking out chocolate items before I realized what was afoot.

I know who I am blaming. Already by mid-December we have watched the movie Home Alone 2-3 times. (Two to three because Owen doesn’t always sit through the whole movie.) About every day he waves under our noses or thumps our arms with the video box adorned with the cherubic/devilish face of young Macaulay Culkin, eyes wide and mouth open in apparent innocence. Owen even asked his dad for it by name. That’s a big effort, but Dad isn’t always a mind-reader, he needs help. But these cues were not enough for mom either. STILL, 54 years though I am, and 24 of them Owen-educated, little did I suspect that Owen might be studying-up. Might possibly be an admirer of the young character Kevin McCallister’s methods for terrorizing two simple minded adults! (Honestly, at movie’s end didnt you feel sorry for the robbers??)

Possibly I exaggerate.  All I know is that after we had watched a couple rounds of Home Alone one night I found myself with 2 toilets and one shower covered in poop, a full bathroom sink full of laundry detergent, and one Owen snickering uncontrollably at the center of it all. (And you can keep the partridge. The pear tree has certainly been stripped of fruit.)  It’s the snickering that gets ya. Owen’s bowel problems are real — although this was pretty rich even for him.  A monstrous bar of chocolate possibly consumed with its papers can get things going. I wish I could say that I handled that evening with superior calm and an objective sense of humor. I did not.

I had Owen make amends, and I did my best to make amends to him for my poor response to trickster exploits and hilarity.  And as always (but particularly when I write about it), now that it’s over I can see the humor in the whole thing. Soap and water, and time, are wonderful curatives for nearly everything. Oh and apology. Gotta have that too.

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Going forward, I am making an effort not to tax my naughty Christmas elf’s frail will-power. After shopping this week, I transferred my bulk purchase of eggs into cardboard crates before the groceries could cool on the counter, and handed that tempting Pete and Gerry’s plastic 18 egg holder over to the man with the scissors. Same for Owen’s favorite red and orange decorated bag of peppers. (When we are shopping together Owen can hardly keep his hands off some of these bags, they hold such appeal for him). Owen’s fingers were twitching as I proffered the bag, peppers safely stowed in the veggie drawer.

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Still scooping…

The plastic bag of tomatoes I was not so smart about. Sure enough, 3 minutes after he got home, there was that grape tomato bag in Owen’s possession, already filled with clothes pins and plastic shards. Owen showed me the discarded baby tomatoes in the bathroom trash basket (“Owen! this is trash! Not a basket!!”), I washed and re-packaged them, he sat a time-out for them, I hid them, and we moved on.

At least I think we moved on — hmm, wait, where are those tomatoes?….

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Egg Hunt – Raw Version

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The weather in Maryland has been playing like it’s April Fools in February. Will we have summer today — or winter?  –or spring? Anybody’s guess. And maybe Owen is playing along, kind of restless and antic.

During the February week that Owen’s mom (alias me) spent sick with a relentless cold virus, things got a little more chaotic in a world always teetering on the edge of the abyss.

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Plastic piles in drifts accumulated around the furniture, an in corners of all rooms. Kale mounds spontaneously erupted on the bathroom floor.

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Or so it seemed to mom, as she dragged herself from the chair at the breakfast table to her bed again, feeling buried in detritus but just not really caring that much. Owen’s dad took wonderful care of him, as always, and waited patiently for things to normalize. Instead he got the virus. So maybe it’s understandable that Owen is a little more squirrely than usual. Or blame it on these radically changing temperatures. Owen likes predictable. So do I.

Thankfully Owen is kind of predictable, in a chaotic sort of way. Which is why, when things did begin to normalize (?) and I came into the kitchen to clean up one night, after a speedy post-grocery-shopping-with-Owen supper of omelettes, and couldn’t locate the box of eggs – the brand new bulk box of Pete and Gerry’s – I was worried. I saw that I should have known better. In a moment of foolish practicality, I had purchased those 18 eggs in the plastic box. In another moment of wooziness, I had gone to the toilet without putting the eggs away, tying up the fridge, and locking up the kitchen. Drat. And drat Pete and Gerry anyway for using a plastic box. Gone AWAL.

The beauty of being sick for a week, however, is that you get lots of time to sleep. Although end-of-day weary, my sense of humor was intact. Feeling calm, I communicated the problem to my son.

“Owen,” I said, “Where are the eggs?

Owen presented a shuttered expression.

Owen. We really, really need to find the eggs!”

No eggs in the fridge veggie drawers where I have found eggs rolling before in similar situations. No eggs in Owen’s collection-of-stuff drawer in the family room. But in the green basket beside the drawer I unearthed hunks of plastic egg crate with a telltale label chopped and mixed into the melange.

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I took Owen’s hands. “Owen, where did you put the eggs that were in the box?” I peered into his face, trying to keep my mind off of leaking albumen soaking into upholstery. “I need to find those eggs.”

He looked off away, into space, brow furrowed, mouth slack. For Owen, the shop closes down about 9pm, and after that the processing of language will be even harder than it always is.  He looked as though deep thinking were required – Eggs? hmmm. Eggs. Do I know Eggs? It seemed as though he would have liked to help me…on the other hand, he could have been really worried about what was on his horizon, when I found those eggs. What do I know. Either way, the circuits were clogged.

I took his hand, and modeled “search for” as we moved through the house. No eggs on the couch, good — and upstairs no eggs on Owen’s bed. Glory Days kale that had the misfortune to be packaged in a glamorous sunrise orange and purple bag wound up in a huge heap on Owen’s bed not too long ago.

That was my last best guess. “Owen! —–!

But oh – wait — one more idea.  Ahhhhh!

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Found. How appropriate to end an egg hunt in a basket.

I required O to help lift the leaking shells into a convenient bucket, although he wasn’t happy about those goopy egg whites

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The bucket had to be pretty clean I figured, since I usually use it for bathtime dousing. From there into a pot of hot water for the eggs, and into a newly made bed for Owen.

Edward returned from his evening meeting to find a kitchen full of groceries and a pot of hardboiled eggs — already cracked.

Golden

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What do you see?

When you see this photo do you think “Wow! Cool! Golden plastic!’ or do you think “Eww, raw meat bacteria!”

I realized, as Owen darted off with the gold wrapper in his hand, that I have known two people who feel excitement about trash. One of course is Owen. But perhaps Owen comes by it honestly – his great granny, Mary Scalbom Nicholson might very well have seen that golden meat wrapper the same way.

Grama Nick (as I called her) had a real eye for possibilities – and re-using refuse. She made dolls with hour glass figures using dish soap bottles. She stuffed some of her dollies with plastic bags. She sewed old panty hose or stockings onto the tops of her dollies heads (their bodies were made of recycled nylon slip) to create brown curly hair. Admittedly Owen is not so creative with his finds. But as he escaped with the meat package from the sink, I suddenly thought of Grama and smiled. And laughed. I could see her holding up that wrapper to study it, and hear her musing, “Oh look at this! Now it seems like you should be able to do something wonderful with this…”  

I witnessed her doing just that, with an old plastic box or a wrapper. She had a way of seeing things.

The Brazilian-American artist Vik Muniz is such a visionary. His approach to the world’s largest garbage dump in Rio de Janerio, for example, was transformative – for the trash pickers, for himself, and for the viewers too, I’d say. If you haven’t seen the documentary Wasteland, that describes his work there with garbage, with the workers themselves, I recommend getting it from Netflix.

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I like to imagine Vik Muniz meeting Grama. I think they would have shared a lot of mutual respect.

Today I would like to take this idea of re-seeing things one step further. In a way this is the ongoing theme of this blog, re-seeing – the difficult – the tragic – the painful as something transformative instead. In the draft for my book Embracing Chaos I write about a family in my church community who had a baby girl with Downs syndrome. Apparently the young couple did not have a negative reaction to their baby’s disability – they  embraced it, felt it was meant to be. She is perfect, the father wrote in a special needs support newsletter, he wouldn’t even want to change her, if he could. This was hard for me. It irritated me. I felt he was weird, and an extremist, and young, and wrong. His point of view challenged the anger I felt at being the mom of a boy with an intellectual disability. I loved my boy – but not what came with him.

First you have to be angry when trash falls on your life.

But after a while – a long while – of breathing – and coping – and breathing – and coping – you may find yourself staring at the same old piece of trash (it recycles for a while just as trash, have you noticed? before any transforming happens at all) in the sink. And on this day it is possible that you may find yourself asking, “Hmm. Ok. What can I do with this?”

And when you are standing at the kitchen sink of life, and the bacteria laden meat wrapper, now washed out with warm soap suds, looks like something golden – when that happens, you are looking with Owen’s eyes. And Grama Nick’s.

 

 

The Strength of Ten Grinches – Plus Two

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My sister already asked me way back at the beginning of the month what I am going to do about Owen this Christmas. She means, what am I going to do to stop Owen’s trying to stop Christmas from coming. From sneaking downstairs like he did last year, devouring every bit of Christmas stocking candy in the wee small hours of the morning, leaving a pile of papers a foot high and “a crumb that was even too small for a mouse.” His siblings were not amused. (Read about last Christmas Naughty – or – Nice -?)

Of course longtime readers know what we tried to do. We built a wonderful, beautiful, aesthetically elegant gate on the stairs!  And then Owen learned to scale the darn banister in no time flat, skipping that gate entirely. (“Once More Into the Breach—!”)

We have to stop Grinchy from coming — BUT HOW?

We rallied of course. Like the Whos. We joined hands and remembered – after a dark despairing little walk in the woods to cool down and warm up – that Christmas happiness didn’t require a thoughtfully arranged, candy-laden Christmas stocking.

Still, even a carefree Who doesn’t want to go through that every holiday.

I have considered floor to ceiling cargo netting along the banister – but cargo netting in a foyer isn’t really my look. And stapling Owen to his bed, or locking him in his room would not be approved of, by me or anyone else (except in a few dark moments maybe). Meanwhile, Owen was busy as ever last night, shredding holiday cards, searching baskets, swiping food off the counter, chopping his sister’s ID card. Much as he loves brothers and sisters coming home, this doesn’t seem to calm him. The time-out chair was kept warm. Must be a lot of stress trying “be nice.” Apparently he can’t take it. How can we both love our Owen and protect our property? How to foil our marauding Christmas bandit?

I know that the best bet will probably always be distraction  – in the spirit of the family I heard of  who used motion activated water (fountain and sprinklers) to distract their runner. If their child bolted out the front door, that moving water captured him, and redirected his attention to the front yard, buying mom and dad a few more minutes to locate him. If I create a barrier, I know that Owen will focus his energies on how to thwart my efforts to control him, displaying strength or agility we didn’t know he had.

This in itself is pretty cool, and I wish I weren’t so tired from getting up every morning with him at 6am that my brain cells are compromised. I’d like to figure out how to employ this phenomenon usefully to make his life richer and more interesting. It’s good to have a reason to fight! Imagine how interesting life would be if we all had to climb down a cargo net to breakfast each morning.

I must stop Owen from descending – But how?

Perhaps hang his stocking at the end of his bed for him to pilfer and explore? Or is that too obvious. Hmm. Maybe it should be dangling casually from the top of the bathroom medicine cabinet?… Or not quite out of reach, on the floor? Just through the bars of the temporary pressure gate in the hall – because there’s no doubt a temporary gate is going to be required across the hallway outside his door. This temporary barrier in place, he still could access the hall bathroom, and check up on his siblings, but not make it to the stairs. Nor incidentally could he reach his dad’s and my room. That does sound good. Usually I want Owen to be able to come and get me when he needs me at night. But maybe not for the short number of sleeping hours on Christmas eve.

And maybe the distraction method does not just apply to Owen – last week we celebrated Edward’s birthday with an evening out. Dinner with mulled wine, and a play – a wonderful theatricalization in words, sing, and dance of Melville’s Moby Dick. It transported us to a different dimension. We came home relaxed. Light. Strengthened.

Respite for long term caregivers is distraction.  Caregivers will still have to face their challenges again tomorrow, but strengthened by a break we can face with humor and patience what we might otherwise grit our teeth and “get through.” Our loved ones don’t just need our hands – they need our hearts. They need our attention. And giving attention is by far the hardest thing.

And so I find that this post is really an acknowledgement: Thank you. Thank you Emma, for an evening out. Thank you Kathie, for walking and talking with Owen twice a week, week after week! And thank you folks at New Horizons, Stephen and Damian, James the van driver, and director Ron Vaughn – for the gift of your attention to some special people, including our Owen.  What a Christmas present, every day.

“And the minute his heart didn’t feel quite so tight,

He whizzed with his load through the bright morning light! –“

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 How The Grinch Stole Christmas by Dr. Seuss 

 

Party On

IMG_0525_crop2It was a party weekend at the Simonses.  Bronwyn brought her art school friends home for a festive summer-like evening Saturday, and Oskar’s soccer team celebrated their winning season on our patio the following night.  All this is excellent inspiration for getting yard work done, and I drew Owen into the clean up process as much as possible.  A guy with his fetish for picking bits should be a great candidate for weeding the patio, right?  Maybe not – but the whole family threw themselves into preparation and he was part of it.IMG_0518_crop

But once in the swing of the party, Owen tends to sink into the background.  Edward and I begin to visit with the guests, and I tend to mentally disconnect from Owen.  I generally hope he’s happy with a plate of food and a spot to sit.  Meanwhile, all kinds of food that he shouldn’t eat are under his nose, and the older Owen is, the less he appreciates that.  The most tempting objects in this weekend’s cornucopia of forbidden fruits were the one liter Coke bottles – though not for the reason you might suspect.  Owen’s brother caught him making off down the hall with one four liter set earlier in the week  — four liters of Coke, taped together, a special purchase from BJs warehouse, something his mom never buys.  Naturally, it was the bottles he longed for, to heck with what was inside of them.  During the party he managed to pour a literful of the nasty contents out into the washtub of ice where the drinks were picturesquely displayed (a la Pintrest), before he was caught by his sister.  By the end of two parties-worth of being marginalized with a plate of food devoid of most of the fascinating new culinary arrivals and no cool bottles to boot, Owen had probably had enough.

Obviously he noticed all those extra plastic bottles and containers that found their way into the kitchen for two party evenings.  Imagine his frustration, Monday morning early, to find that everything was cleaned up, spaces tidy, counters clean, and kitchen locked tight.  It must have been about 6 am when he experienced that frustration.

Because sometime just after 6 am our telephone rang.

“Hullo?” I yawned into the phone.

“Hi this is Sharon,” said my neighbor’s terse voice. “Owen is out on the loose in the neighborhood, at Hyatt’s now.”  She didn’t add til later that “mean old Mrs. Kunkle” had refused to share her trash cans with him already that morning.

I thanked her (at least, I hope I did), groggily yanked my bathrobe around me, and out into the steamy morning air I went.  I noted the back door standing open, and the beautifully tidied patio beyond it empty (why, oh why hadn’t I left a bottle or two out there for him to find?!).  And out front was Owen, in the street, hovering over our next door neighbor’s trash cans.  I don’t know why he needed to look farther than our own driveway, since after two parties ours fairly bristled with cans and containers of all sizes and their riches.  The other pasture is always greener I suppose.  I growled, and Owen moved homeward, waddling to support the dangling nighttime undergarment.  What a start to the day and the week.

In view of all this, it certainly behooves us to deadbolt all the doors, every night, if we can just train all the family members to do it. That works until Owen wants something on the other side enough to figure out how to open the deadbolts.  What then, chains?  What is the long term answer? Ask me in about 20 years, when I am that much wiser.  One thing I do know: you don’t want to seem to care too much, or to turn it into a competition, because the tighter you squeeze the harder he will work to escape.  Human things need to have freedom.  When I think I am clever for inventing a way to control Owen, he tends to foil it.  I guess that (and the expense) is why I haven’t yet invested in one of those wrist devices that Owen could wear 24/7 that would permit me to track him on my cell phone.  I suspect he would hate it, and spend a lot of time trying to pry it off.  We are lucky he’s not a “runner” – an individual who gets huge pleasure from suddenly charging forth into streets, down highways, or wherever, fearless.  Terrifying. Owen only occasionally wanders.

But it would be smart to lay out some decoy objects, if I can just remember to do that.  I listened to a very intelligent presentation once about designing houses and spaces to support those caring for their special needs children.    This designer was an advocate for other ways of managing “runners” besides keeping them locked up, such as a motion sensor that turns on a sprinkler as you go through the door.  If your child is very attracted to water, that sprinkler coming on will have great appeal, and lure them into the yard instead, away from the street for the few moments it takes for their parent to catch up.

There are special needs folks who run away, every chance they get.  There are folks who stuff things into toilets and flush compulsively.  There are folks who eat non-edible objects, like their mattresses.  And there are the parents who love them, the neighbors who help to look out for them and love their parents, and the creative people who think outside the box about how to help it all work better.

And there is Owen, currently in training as connoisseur of recycling bins, specializing in educating his mom.

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Weeding the patio…