— or is it butter escapes?
To catch a thief! — well — Good luck–!
Sweets to the sweet; butter to the agile.
Butterscapes
Uncategorized
Ciao!
It’s about halfway point in a two week absence from Owen this summer. Edward and I are celebrating our 25th anniversary with a long-planned trip to Italy. Our son Scott reminds us that this trip has been about twenty years in the making. Over the weekend all our children will join us in Florence, except for Owen.
During this past week I have had moments of deep anxiety about him, while trying to let go, relax and enjoy beautiful sights and sounds and tastes of Venice .
In response to my worried text query last week, Freya immediately sent me a this —
— along with a text message: “Owen has been in a good mood so far, happy to do the usual and the unusual. Right now [I’m] following him about the yard on his self-guided tour, slowly herding him inside to get into a bathing suit – he swam a lot for me when I put all his toys in the water! I’m hoping his general good-natured-ness lasts for Tania.”
Yes, me too. Thursday my niece Tania and nephew Shaun arrived, and yesterday took charge of Owen, house, gardens, 2 dogs, and 14 chickens, while Freya and Oskar fly to join us in Florence.
Relief washed over me receiving this photo, seeing Owie’s quirky smile and reading Frey’s words. Relief washes over me again each time I see it! I wonder what I am afraid of? It isnt that I think Owen can’t survive without me. Not exactly. I want him to know that he is loved, and that we are coming back. And I know from long and deep experience that although Owen loves outings, he likes them to familiar places. He likes to know where the toilet us. He gets no benefit from extended contact with things foreign – as far as I can tell he just feels disconnected. When we have tried to take him to new places his restless prowling has sometimes been disastrous, but certainly not relaxing.
So as I get ready to leave behind the water sounds of the waves washing romantic, crumbling Venice outside my window this morning, to explore gardens, wineries, and museums of bright hot Tuscany, I know that it’s right that Owen is at home, with people that love him, doing the usual instead.
Maybe I will find him a really cool ancient Roman rock…or, better yet, an Italian soda bottle.
Shredding
Shredding
A hundred color bits.
What was once a plastic cup becomes one hundred colored bits
and he who wields the scissors with a smile
verge of a laugh – a cackle – sparkling eyes
You’ll stop me, he seems to say,
You’ll be unhappy with this!
My anger
the intense frustration pouring out of my body
the drug on which he is tripping.
Red bits,
shreds of plastic
cover the table, and the boy with scissors chops
not too quietly
while the speaker speaks
at a church supper.
I say “Not too loud -it has to be quiet -”
and he hears.
And life goes on, somehow
with bits of plastic,
on the banquet table cloth.
Afterward my friend asks, “How did it go with Owen?”
And I say “You tell me”
she says “I didn’t hear him at all”
can it be that everyone understands
the boy with the scissors
and his bits?
Rainy Hour at the Aquarium
Toward the end of a very busy Memorial Day Weekend, Owen was getting bored. Mom and dad were more than a little exhausted. Not feeling too generous nor too creative. Very likely, it would have been a long cloudy afternoon of breaking up plastic pots into bits and swatting mosquitoes for him, but Owen got lucky.
His sister Freya offered to take him with her and her boyfriend Keir to the Baltimore Aquarium for the afternoon. I am still wowed and shaking my head at their generosity. Perhaps they are, too.
“Mom, if you get a nap, it will all be worth it,” Freya said. Worth her effort, I guess she meant.
Yup. It was certainly worth it. Dad and mom got naps. And then, undeterred by rain that descended the very moment we headed out into the yard, we had a carefree hour planting herbs and vegetables, and got soaking wet in the downpour like goof balls. Two and half precious hours of unscheduled freedom later we were dry and dressed and driving up to Baltimore under grey skies to meet for supper and to liberate our benefactors.
Meanwhile Owen had been keeping busy.
The line to the aquarium was very long – plenty of other folks had the same idea for entertainment on a rainy afternoon of a holiday weekend. But Owen doesn’t do standing still in line. So to distract him Freya and Keir took him through the tents and market stalls and displays of the adjacent Middle Eastern Bazaar. Very fast. Lots of noises, sounds, images, and no cues for Owen as to why he was there or what he was supposed to do there. As I understand it, Owen got busier.
They got back in line at the appointed time to learn that the tickets were $40 each!! (Owen treated). In the end Owen, Freya, and Keir had only one hour to look at the fish before closing. But I understand that Owen made efficient use of their time. In an hour, they had enough time to see “everything” Freya said — except the dolphin show.
But they did see dolphins. Freya said this was the one time on their outing when Owen calmed down. The cherubic photo she captured above may chronicle the most peaceful moments Owen spent all day. In the dolphin tank. Looking for Chaos, perhaps?
An expensive hour, but a precious afternoon. By any measure.
We got them a good supper.
SHARK ATTACK!!
Lately my world feels like life under siege.
Last Saturday morning Rascal our Australian Shepherd crashed open the door to my upstairs studio, apparently to roust me from peacefully writing. He didn’t flop down on the floor with his usual “I am so fed up with being ignored” doggy sigh. He stood dead center in the doorway, looking at me with his one blind old doggy eye. Trouble. I just knew it was Owen. I was being summoned.
I had left Owen in a warm bath in a warm room, earlier that morning. Too early, since he rises at crack of dawn every day of the week. I gave him a plate of snacks and he brought along some favored plastic bottles, plus his arsenal of plastic toy guns, which to Owen are more like objets d’art. A crowded but contented bath. Seemed to me like a good moment for some Saturday morning writing, while Edward snored peacefully recovering from his busy week.
But naked Owen had ditched his tub, and was downstairs. Into things. Oh well. I thanked Rascal, and called Owen up and began to help him dress, when the two pieces of shopping card in his hand stopped me. Oh. No.
Racing downstairs, I found my purse sitting on the chair beside the phone, right where I had left it–but under a fluttering mound of papers. I dived into them, flipping through the mound of folded bills and tickets that fluttered to the floor. “What did I do to make you do this?” I asked of Owen, God, and the universe as I searched back and forth through flyers and grocery receipts. “Didn’t I run a nice warm bath? and get you a plate of snacks this morning?– WHERE are those credit cards? where are ANY cards?–Don’t I constantly wash your clothes?! Cook your food?! –No cards at all – I clean up your stuff! – tidy house! – daily make your bed up clean and fresh!!” There were no cards in Owen’s collection drawer – no cards on the kitchen counters. “Edward!! help!” I howled as I carried on my interior rant and prayer–“Is this pay backs Owen? for going out with Dad last night? leaving you home with a sitter? good grief–- Please not the driver’s license! let me not have to hassle with MVA– Or am I reading in unnecessary motives? Is the sheer delight of hacking up enough incentive all by itself?”
Edward found them. A fat handful of chopped cards in the bottom of the little trash basket in the study. Credit cards, ID cards, bank cards, gift cards, health savings account card, insurance cards. Bonanza. All chopped into large pieces. No– not all. Owen left me my driver’s ID and one credit card intact. Maybe Mom’s face on the driver’s license was enough to protect that one. Some prayers were answered. He must have been working fast though – no time for mutilation. But, his bloodlust not yet assuaged, every little plastic card on Edward’s key ring was cropped too. Later on we found a few recently potted up hosta plants un-potted, and languishing under a bush, beside their empty pots. Wow. He really needed to send a message.
But what, exactly, would that message be? What, and also Why?
Pointless questions, Wystan.
Something has to be done.
Besides helpless outrage.
And tightness in the chest.
Because I grew up in a home where such a breach of etiquette as chopping up your mother and father’s credit cards almost certainly would have resulted in outbursts of rage and corporal punishment, I have a strong urge to yell and spank or smack to let Owen know that he really REALLY REALLY can’t do this kind of thing!!!!!!!!!!!!!!!! My primal self wants to solve this problem as I have seen it solved, and the primal part of all humans that responds to the law of “an eye for an eye” tells me that this might just drive the message home.
Years and years of experience I have taught me otherwise. Yelling and hitting doesn’t communicate much to Owen except “oh oh storm warning! hide your head she’s angry again.” And the better, higher part of my mind believes that violence is not actually the best solution to any problem.
BUT WHAT THEN ? yell my thumping pulse and beating heart of the caveman part of myself. THERE HAS TO BE A CONSEQUENCE!!
Yes I think wearily. There will have to be a consequence. But what? Situations like this tax my creative thinking, in my role as police officer, judge, jury, and warden. Edward supports me, we work as a team, but the weight of “what to do” and the implementation of it rests heavily on my shoulders.
Whatever the “consequence,” it’s not likely to stop Owen from doing this again. The only way to do that is to hide my purse. First of all, he doesn’t understand the crime. Not really. We let him cut up bottles — but then not bottles that “belong to someone else.” What does that mean? He will be praised for grabbing plastic bottles out of the woods, but if he grabs up someone’s soda at lunch and pours it out on the floor, or makes a move to hook the driver’s tempting green bottle on his way out of the van in the afternoon, he will be seriously scolded. But what’s the difference between this piece of plastic and that one? I am pretty sure that Owen knows that he is not to go into my purse, but he has no real idea why – and the fact that it is forbidden only increases the appeal. What he wants to do, he does of couse, and whenever he possibly can.
Don’t you?
In the end, I confronted Owen and kept my temper, letting just words out come through my mouth, mostly not yelling, and not hitting except for one thwack on the top of his head. For this I am grateful, I thank the Lord, and I credit respite: getting out with Edward the night before for some couple time, and getting my writing time in that morning, even though this made it possible for Owen to sneak out of his bath at all. Getting respite is critical to caregivers, keeping us elastic, able to bounce instead of crack under pressure.
We “grounded” Owen to his room for an hour that morning, since that was something different to try to get through to him. I have hidden the scissors (again). I told him no scissors for three days. You have your plastic to cut – those are YOUR things. You cannot cut MY things. No scissors if you cut MY things.
Still I know that “MY,” (such an important word in human vocabulary), is hardly meaningful to Owen at all. He doesn’t do pronouns. “MINE” and “YOURS” aren’t concrete words. They are abstract. What does “mine” look like? Owen lives in a very innocent, very small, very physical world, of which he is the star and center player. He likes people, but his relationship to them is distant – he can only vaguely connect to their doings, their thoughts, or their wishes. He has less concept of “property” than a two year old child, although I continuously talk to him about it. He knows “I like this” and “I LOVE THIS!” or “I want” and “I WANT” but I doubt these feelings are framed in words, and a constant for him is near inability to express any of those desires to anyone else. He will say “no fank you,” or push my hand away, to indicate the opposite.
Strangely though, sometimes Owen is very sensitive to others’ emotions, and at unexpected times he will suddenly lovingly woozle someone (sometimes a near stranger) just when they need it. Just not their property I guess. His innocence is really ignorance, that also sometimes seems wise.
* * *
Looking back on Saturday’s Shark Attack from the vantage point of my writer’s desk, I see now that the cause was almost certainly connected to doing the “Art Walk” at Bronwyn’s school the Thursday prior. Walking into art galleries with Owen is an act of unbelievable bravery – kind of like juggling eggs. I managed it that evening by directing Owen toward the little pile of student artists’ business cards at every stop. He liked that a lot. Even with two hands full, selecting another and anoth– (“Hey! Just ONE, Owen!”), he managed to work them, folding them into origami-ish disarray. I am always struck by how quick and deft those hands can be, other times so limp and powerless. And again other times how powerfully destructive! Once he cut into a construction helmet with shears…
Anyway, it’s always hard for Owen to let go of an obsessive interest. And it’s hard for him to see any kind of boundaries. I suppose I lit a fire and should have been on the watch for it to keep on burning. Handing him little cardboard cards, reminds him how very much he likes the nicer plastic ones – and inspired on a Saturday when his mom’s back is turned, the adventure of going to hunt up some up for himself is an irresistible challenge. The appeal of being in trouble is almost irresistible anyway. The worst thing in life is being ignored.
Isn’t it.
PS – Thanks Rascal, my blind old dog. Although I cannot ask you about it, I have to guess that you heard Owee cackling hysterically as he chopped (heh-heh-heh!), and you must know as well as I do what that means. You put two and two together, and I am still impressed that you came to get me.
Montage of an Afternoon
Contrary to appearances, life at the Simons household does not revolve entirely around Owen. There are times, particularly in spring planting time, when the thrust of a project drives Owen’s presence and his in-articulated thoughts, feelings, and desires into the background of his mother’s and father’s minds. Sometimes, many times really, there are occasions or events, there are guests, or gatherings around the table when he is but a shadow presence. Or he is left behind with a sitter. None of this is necessarily bad, it just happens when caring for a person with an intellectual disability – one who never grows up. It is hard, and it is true.
Because Owen is not able to speak his inner Owen, he acts his inner Owen out. So, when we know that he has been shoved to the back of things for a while, it’s not a bad idea to slow down and check in with him. Stop “doing” and spend some time.
Last Sunday, at the end of a couple of days’ visit with some delightful relatives, Owen and I drove them to Reagan International Airport. We kissed and hugged them goodbye. Driving home my thoughts of garden projects were interrupted by a sudden inspiration, and we turned at Potomac Park for the Tidal Basin. In the golden afternoon sunshine, Owen and I wandered the Jefferson Memorial, admired its recycling cans (outsides only), and just enjoyed the day and each other…
Hmmm. Goodbye. We’ll be back soon.
Spring—ing!
It’s been a rough couple of weeks for me and Owen, since the time change. Owen always starts to change his clocks before anyone else does, waking at 4am or so at random intervals weeks before D-Day. I was completely perplexed by this, again, until I put the pieces together. Oh yes. This has happened before. About six months ago.
I’m sure Owen has a body memory of this twice a year assault to his schedule, when suddenly and unaccountably everyone around him begins to do things at a different time, day after day, all out of rhythm. This may mean that his morning bath suddenly lasts twice as long, and he waits too long for breakfast. Or it may mean his mother or father comes into his darkened bedroom, turn on the light and ask him to get up. Either way, very unsettling – and he responds by beating us to it, and disrupting his own schedule. First he seems to anticipate the change and get up earlier, then he gets up even earlier (ha showed you), the he can’t get up early at all. When the routine is to be unsettled, for reasons you do not understand, well – no wonder Owen stops sleeping well. And I suppose it’s no wonder during non-time-change times of year he occasionally turns tables, flipping on the light in his parents room to let them know that he is up, and they are not.
This spring, through a variety of mis-chances having to do with late nights and spring break, we came at the changing of the clocks already tired. Cue overdrive. I found myself buzzing between four or five projects, every evening working on a couple of things simultaneously, as if this were the normal thing to do. In a way it is, for me. My family has seen this behavior often enough not to notice much. When I got to the point where I had three plus projects in the living room and dining room, (two or three in the studio is a given), and was taking on about 4 new volunteer jobs at the church, even I began to be anxious and lose sleep. A thought penetrated my foggy consciousness: I can’t do all these things. Why am I trying to do all these things? Help.
During that week we took Owen and his plastic collection and scissors with us to a church supper and talk. Owen was pretty good, but he was busy. One of our dear old friends sat at supper with us, and she commented, watching Owen chop, “He’s so industrious!” Some people are blessed with a positive way of looking at things. In years of writing about Owen’s obsession with chopping large objects into small, I had never thought of this as industry. It gave me a new perspective. Maybe Owen’s busy-ness and mine…bore some relation to each other. Maybe Owen and I both suffer from spring mania.
Ah! Spring! The sun comes up earlier, bird sounds start earlier, and not content with that, society sets its clocks to wake us suddenly, rudely, even earlier. Inspired perhaps by growing things, opening things, stirring in the tree sap, who knows, we sensitive spirits start to buzz.
All over the house are Mommy’s piles : photographs on their way to albums, seedlings on their way into gardens, ideas waiting to be articles, memos, thoughts, half-written letters, reminders for commitments or committees. And all over the house are Owen’s piles: clear plastics from fruit boxes in various stages of manual purposeful disintegration, pieces from vinegar bottles, green plastic hunks chopped from mushroom boxes, bright colorful bits chopped from who-knows-what-don’t-think-about-it found objects, also papers and bottles and cans collected on walks into the woods. There’s always more – always more plastic (wood, metal – but mostly plastic), and always more ideas pouring out of my brain into our house.
My frenetic activity bears a lot of resemblance to buzz – I buzz more than I am productive. I might as well be chopping up plastic bottles. And through that buzz I tried to think whether Owen does this gathering and chopping more and more intensively during this season. The jury is still out.
He may – as he darts forward to drag a half buried bottle from the bushes, or charges across the parking lot at church, with unexpected speed, to investigate the contents of the recycling bin. “Oooh! There’s another over there! And there!—and THERE in the weeds! That one needs loving!!
For days before Easter weekend I worked purposely to disengage, to calm my mind, to breathe, and so prevent myself swirling into a tighter and more layered frenzy of industry –- But any juggler can always add one more ball, right? It’s just one more! – for a good cause! – And they need me!…
You need only add a little Easter chocolate to spring mania to run helter skelter to the extreme end of the spectrum: Omnipotence! Omnipresence! and Omnipresence! Whew!
Naps are the only cure. Naps will save us.
The way back out of this intensity, apart from a trip to our doctor, thank God for him, is to start purposefully sleeping more, doing less, eating less sugar, drinking no caffeine, no chocolate! Very sad. Life is not always fair. If I can make myself stop, I nap before Owen’s van arrives at the end of the driveway in the afternoon. If I can’t, I make him a snack, and talk him into taking a rest with his bin of plastics, while I rest on his bed. A harder struggle is to get into bed earlier that night, when all is quiet and the projects make a siren calls to me from every corner.
Owen has begun to clean up his piles from floors to drawers, and I am now wise enough to follow his example, to dismantle my 5 or so projects and put them away. In my manic states, I can imagine a million ideas, hundreds of brain children, but it becomes harder and harder to get any one thing done. And I usually stop writing. Writing requires inward focus, and quiet borders around my life.
This is the world where Owen lives, I suspect, and part of the reason he does not progress or progresses very slowly, in learning. The exception that proves the rule is that when he REALLY wants something, under this sudden focus on one idea he open locks, climbs fences, locates hidden sweets, or charges across parking lots at unrecognizable speeds.
As I struggled with how to finish this rather long posting, this morning Owen gave me my ending, and my purpose, as he so often does. I thanked him. I was washing his back in his bath, thinking how peaceful was this small bathroom world, and this humble chore.
The thing about my states of mania is that they start in wanting to make a difference, make a change, to improve something. It never looks like trying to climb mountains until I am in the middle of the project. In the midst of spring mania, possibilities like mountain range vistas open before my eyes – I can see things I didn’t see before – I can see how things could be done!
But, from the vantage point of a mountain, the only things that seem real are other mountains. Hills hardly register. People, houses don’t even appear. Mountains are reality! Mountains are exciting!! But, it takes a lot of energy, dealing with mountains. And getting from one mountain to the next takes much more energy than it looks like from the mountain top…
When I began to come down from my mountains, I was relieved to rediscover the calm everyday work of my life waiting for me. Like scrubbing Owen’s back. By the simple fact of needing my help, Owen helped me find words for my feelings: how powerful the small things can be, how important to just create everyday calm out of chaos. Even mountain climbers need a warm meal, clean clothes, and clean sheets to sleep under.
The chaos of enthusiasm and creativity, joyful and productive, is a state I would never leave entirely behind. But as long as I can stop, and come away, I will remember those vistas of mountain ranges of possibilities as a gift, as I descend into the oblivion of sleep.
Another time I will try to wrestle mountains of photos into tidy albums. Another spring, I may plant more seeds, earlier, for the summer garden. In some future election year, I may make thousands of calls in support of a worthy candidate. But today, I will scrub Owen’s back, get him a warm breakfast, and make sure to give him a hug and kiss before he goes out.
All Flugged In
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.
Naughty – or – Nice -?
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.
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.
Ungrateful
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.
Embracing Chaos 