Embracing Chaos

Birthday Contemplations

August 20, 2015wystansimons6 Comments

Owen tries on a helmet during his birthday shopping outing

I took a midsummer break, dearest reader, during these so very full summer weeks of July and August. And I have missed writing to you. Will I come back with greater insight? Well-rested, inspired even, after two weeks climbing mountains and swimming in waters of the Adirondack Mountains? I thought I would. It was a wonderful break for our family, while Owen was lovingly cared for at one of the most wonderful places in the world, Camp Loyaltown, in Hunter NY. But the peace and internal calm lasted just about the usual 24 hours in the face of Real Life.

This week is our birthday week, Owen’s and mine. Twenty-two years ago Owen was the present I received a few days before my 30^th birthday. There were times when I regarded that fact as a slap in the face, or as irony, but that isn’t how it seems now. Maybe a little of that mountain top zen remains with me after all. I like to say that I don’t view life the way I did years ago. I see Owen as my teacher, and I still have a lot to learn. In other words, I flunk out a lot. At the same time, it’s true that I am the parent — I must keep on trying to reach him and teach him. We have never been the “kind of parents” to let our kids run wild, but Owen has his own ideas. As much as I appreciate him, and love him, and learn from him, he drives me crazy and I need regular breaks and daily support to keep on caring for him.

On this morning of my birthday, I find myself reflecting on that very thing – the hard-to-explain give and take of teaching and being taught, freedom and responsibility, that life with a child or adult with behaviors and an altered view of the world provides. All our contact with other human beings is a chance for softening, the sanding down of our personalities. A chance to learn to tame our impatience, relax our desire for a world without mess, or confusion, or well, other people’s needs and attitudes. I stumble over having patience with Owen, and I also stumble trying to understand the people who don’t understand him. At 52 I still experience shock when people don’t see the world as I do.

So where does my Accountability begin and end? I struggle here, in all situations, and in particular with Owen. Where are my boundaries, to use that tired psychological term. You may be offended with my behavior, but is that because YOU are offended, or because I am offensive? How much guilt do I assume for Owen being Owen, and encroaching on others’ water bottles, damaging things, or wandering into your house or yard? How much should I care (worry) about how people evaluate me when his behaviors lead to trouble? Owen can’t be allowed to do whatever he wants. But a person is not like a hedge, requiring only clipping to take the correct shape.

In the long run, I think gentle and creative redirection over a long time is capable of teaching our son to fit better into society. But I feel compassionate that he really doesn’t understand the concept of “property,” that when he wants something he has very little impulse control. When I tell him he can’t have someone elses’ _____ (fill in the blank) he may shed tears of grief. Or, he may laugh. He may resist me stubbornly. Sometimes he is mad. But bottom line, he doesn’t get it – he only knows “I want” and “I am unhappy about not having it.” He also knows guilty, and oh-oh when he’s taken whatever it is anyway and Mom is probably going to get mad.

Last night Owen ran away. Right about suppertime, his dad realized that while he thought they were both hanging out in the front yard picking beans for supper, actually only one of them was picking beans, and the other one went off to find something more interesting to do. I was annoyed, as the supper-maker, but I tune-out on Owen too often to be critical. Our family fanned out quickly, checking all the usual spots – neighbors’ recycling bins, church recycling bin, picnic tables, wood trails across the street – but no Owen. My dear cousin joined the search, and turned his teenagers out to help, combing through the summer night with flashlights. One of his sons followed the clue of barking dogs and found Owen prowling there, one street over from ours, an inexplicable location, farther than he has wandered before, and in the dark.

This meant that we spent the rest of evening researching locating devices. Locating devices are very expensive, and prior to now it seemed an extreme response to an occasional inconvenience. Uncertain whether Owen would tolerate wearing one, anticipating that he would be likely to rip, or twist, or cut himself free, we considered but did not buy one. Until last night.

As I searched the internet for the right gizmo I found a great deal of information on wandering and locating. I learned that wandering is terribly common in people with autism (as people with Alzheimer’s) sometimes with terrible results. There were multiple cases reported of drowning deaths (yet again I blessed Mr. John of C.E.Rieg School who long ago taught Owen to swim). Deaths from exposure were reported, and multiple stories of searches. There were also stories of a mother being held accountable, charged with negligence after calling 911 for help (reason.com/blog/2015).

There are probably careless parents out there – but I think it is much more common that there are parents who are exhausted, doing their best, and don’t recognize the danger in a situation , don’t see all their options. I have been such a parent, and I have been judged for it. It’s an extremely painful experience for an overachiever – I highly recommend it for personal growth. Many wonderful, thoughtful, invested parents have made these mistakes. When we walk away from such a situation, in a cold sweat of relief, we know we are lucky. When we do not walk away, when our child is hurt or lost to us, we never completely recover.

This week a friend of mine had to take her son to an institution to be cared for, because he became too difficult for them to manage at home. I have not had a chance to talk to her yet, but the words she uses to write about it are painful poetry to me. Here is a link to her own words:

http://archive.aweber.com/marriagemoats/CaC3j/h/Marriage_Moats_How_Much_is.htm

Thinking of my friend Lori, I remember a shocking experience I had, many years ago. When speaking of her son and her challenges to another friend, that woman responded contemptuously, scornfully. That boy could not really be called autistic, she said, because his mother was really to blame for his condition. She told me of something that the mother ought to have done at her son’s birth or before (a shot? a test?) and the not-doing this thing had, in the speaker’s mind, been the cause of the boy’s condition. This was not a case for compassion, apparently. She saw stupidity, and knowing nothing of the situation intimately, she felt anger and laid blame. Perhaps this was her way of voicing her sense of helplessness – to control life’s frightening things. If someone is to blame then maybe there was a way to control it… to make bad things not happen…

What has been circling my head all this morning, to which I am applying my 52 years of wisdom, is the puzzle of judgment and criticism, and maybe luck, or knowledge. I have more than once listened to people (parents, women really) speak sneeringly of other mothers’ or fathers’ mistakes in a way that freezes my blood. I always identify with the ones called “stupid.” But today I saw that I make those kinds of impatient, contemptuous statements myself. For instance, when I see a small child walking or running behind their parent/s in the parking lot, the adult not holding the child’s hand. When parents have their kids out late at night at the stores, and then speak in an angry and ugly way to their whiny children. I am critical of things like that.

Obviously, Owen has more work to do on me. And we’ll order that location wristwatch device and hope Owen feels like wearing it.

https://www.autismspeaks.org/wandering-resources

Graduation – Anniversary Collage

July 14, 2015July 14, 2015wystansimonsLeave a comment

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

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

Here are some mementos of the day–

Imported from Android Cellphone - 2015 281_crop — Waiting for the start–

Imported from Android Cellphone - 2015 290 — Glad to see Dad! but…

Owen doesn’t care for group photo shots —

Or any photos shots at all–

Unless he chooses them himself.

Still, we keep trying —

Imported from Android Cellphone - 2015 302 — Owen with his one-to-one Ciara and his teacher Paul

Imported from Android Cellphone - 2015 299 — Ciara and Owen had a bond. That doesn’t mean he’ll take a photo with her…

Happy anniversary of graduation, Owen!

The Language of Laughter – Owen and his dad

July 2, 2015July 2, 2015wystansimons4 Comments

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

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

Owen at play_crop — Thespians at a school play

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

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

Imported from Android Cellphone - 2015 312_crop — Graduation 2014

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

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

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

140_crop — Pick up time after two weeks at camp

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

Little Brother

June 20, 2015June 20, 2015wystansimons5 Comments

Last week, Owen’s little brother graduated out of the little local school close to our home. Oskar gave a graduation speech, and Owen listened to it without being the least bit disruptive.

The morning before, I paused in the midst of the frantic activity of school play and graduation preparations to look back – although looking back is usually painful (“Nostalgia is a trap,” my mom once told me). I could see old photos in my mind – though of course I cannot locate them — for instance a family outing to Great Falls, Owen “woozling” the top of Oskar’s head with his cheek, an arm wrapped around tightly around his cranium, Osk’s face in Owen’s armpit. That cranium is far beyond armpit level now

When Oskar was born, Owen spoke of him in sentences: “He’s a wittle piñata.” How things have changed!…

IMPORTED FROM ANDROID CELLPHONE - 2015 318_crop — At Owen’s graduation July 2014

Party On

June 3, 2015June 4, 2015wystansimons4 Comments

It 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.

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.

Sleep Like a Dog. Then Wake Up

May 28, 2015November 15, 2015wystansimonsLeave a comment

My friend Lori was writing this week about her son Ben and his sleepless night. Usually Lori posts about marriage support (she and her husband John are marriage counselors) on her blog Caring for Marriage. But a family member with special needs tends to make a pretty large impact on a marriage – so sometimes she posts about Ben too. Or her other kids.

Maybe there is something in the air. Owen and I have also been pretty sleepless, rendezvous-ing the last two nights in the kitchen around 3:30am. I never know what wakes me (us), and I am inclined to blame Rascal my neurotic Australian Shepherd. (The Aussie is never confident about the safest place to sleep – central location top of the stairs to protect his flock from all those terrible things out there? Or right next to mom’s bedside to be protected from all those terrible things out there?)

To be fair to the dog, guys like Owen and Ben commonly have disrupted sleep patterns. It could be that some inner connection to Owen wakes me long before I physically hear him. Or it could be years of experience. I have wondered, nights when I am lying there wide awake, what it is about. But I tend to sleep lightly anyway, while my husband and the Boston Bulldog generally sleep like the dead. Either way, by the time I heard crashes in the kitchen early this morning I had already moved the Aussie twice and lain awake (like the Aussie) worrying. Maybe Owen had been doing that too.

Lori and I have in common that we aren’t finding it any easier to deal with broken sleep cheerfully in middle age. She says she glares; I tend to fuss like Donald Duck in a fit. (You’ve seen the cartoon?) However on this second night I found myself better able to consider things from Owen’s point of view rather than my own sleep-deprived rage. Lori’s post gave me the gift of a sense of community. Lori, Ben, Wystan, Owen, the neurotic Rascal, and who knows how many others out there are enduring this phenomenon together.

I shepherded Owen toward the digital kitchen clock and showed him the numbers “3:30” there. Three is time to be in bed, I said. I asked what did he want? was he thirsty? I sent him back upstairs with a glass of water. I tucked him in. And Owen seemed calmed. He didn’t get up again, although I am not sure he slept. Basically I found myself acknowledging through my tone of voice and peaceful manner that he has his own inner life and possibly his own reasons to be up. Owen was probably surprised by this zen version of the nighttime encounter with mom. I couldn’t have been so zen about it had I not read Lori’s musings earlier that day:

“…While I have plenty of phrases at my fingertips with which to express my side of Life with Ben, he does not. So he yells. His hurt is probably as legitimate as mine, his distress as deep.”

Yeah. Owen has always had times when he seems more frustrated, more restless, more zoned out, less communicative. And lately it has been one of those one of those times. Reflecting some more on what Lori writes, I am getting the strong impression that my job in Owen’s life is to be to a connector. It’s not a job I am sure I want. But I see what a difference it makes when someone is helping him meet people, helping him to make sense of sounds, images, smells, events (why are we here, now?) – helping decode all the incoming sensory experience, connect the dots, make sense of the chaos. Owen becomes a different person the more I treat him like someone who understands things, but just needs support.

I suspect that there is a lot more going on in that curly head than me or most other people know. But because of the potential I think is there, often my response is to get mad when Owen masks what I think (hope?) he is capable of. Owen’s disability is an intellectual disability. Helping him overcome it will never be straightforward or visible, like attaching a prosthesis to replace a missing limb. The people who see potential in Owen are his prosthesis. It is we, or no one, who will to find a way to bridge the gap, and connect Owen to his world.

But...am I willing to give up my own agenda to do that?

Better sleep on it.

Read more about Lori’s blog and how to receive it here – http://archive.aweber.com/marriagemoats/5E4Mv/h/Marriage_Moats_Pray_for_Ben.htm

Laughing in Church

May 20, 2015May 20, 2015wystansimonsLeave a comment

Owen curls forward on the church pew, close to touching his curly head to the back of the cotton dress shirt of the man in front of him. He is snarffing in the crook of his arm. Despite the fact that he is stuffing his mouth into his sleeve, little noises are escaping. He turns to look at me, trying with his whole body to repress the mirth that is crinkling his eyes up and shaking his body.

That’s new. Owen frequently laughs in church. What’s different today is that he truly has a case of the giggles, and he’s trying so hard to repress them. His genuine, forbidden, over-spilling mirth is contagious, and I find myself (veteran that I am) fighting the upturning corners of my mouth. I shake my head at him. I wonder what the joke is.

I slid in next to Edward and the boys a little late this morning, since I brought snacks this week and got caught up in chatting in the church kitchen. Our placement in the back of the center row of pews is Edward’s choice. I can’t help worrying whether the family in the row ahead of us sat there after Edward and the boys came in, fully conscious of what they might be putting themselves through, or if they were there first and we joined them. This particular family already puts up with a lot from Owen, since they happen to be our next door neighbors. Personally, I believe in spreading the love around a little. But Edward is cheerfully oblivious to these sorts of subtleties. Lucky guy.

Owen’s noises are pretty famous at our church, after all these years. People there knew him when he was a yappy, fussy baby, a paper crinkling toddler, and an occasional speaker. More recently he’s been a plastic twister and snapper. Thankfully, he seems to have moved through the recent phase of letting the most amazing belches fly in that quiet space. (Cross fingers and knock on wood, if that isn’t inconsistent.) Every Sunday we would wonder, what is it about church? One Sunday during services last summer, Owen really let ‘er rip. One of our friends said kindly afterward that he felt the relief from that belch himself from three rows back.

Owen is an innocent fellow. I’m just not sure how innocent. He has always been amused by being a pest, prone to chortling at other people’s irritation. And innocent or not, I draw the line at his new tendency to lean over to one side the better to release the noxious gasses that are roiling in his gut. Giggling mom and Owen exit church to find a seat in the foyer. A complete calm falls over him there, and he sighs as we sit together in the chairs against the wall in the carpeted reception area. I can still hear the sermon, but I am distracted. I keep wondering What was so funny? and is he doing it on purpose?

Loot and Pillage

May 13, 2015wystansimonsLeave a comment

The day of the Baltimore riots, I was supposed to be writing a post for this blog. I couldn’t focus, and as you know, I missed posting that week altogether. I couldn’t see a way to connect the life of Owen to the crisis there, and what was happening there was all my brain could hold.

In the days since that Monday I have watched and listened as people respond to an experience of chaos, most of us from the outside, most of us without firsthand experience of life in that part of Baltimore or the lives of those who swept through and looted it. On FaceBook and in person, I have interacted with people who are offended or angry, who protest against or at least wonder about any helping such a set of losers that they would set fire to their own homes, as it were. I have read people speak dismissively of the angry, violent Baltimoreans as individuals so (dumb, violent, ignorant, thuggish) as to be beyond pity, and beyond help. Isn’t a situation like that, and anyone who would act as irrationally as that, hopeless?

Last weekend, as I found Owen emptying his second super-sized bottle of Neutrogena dandruff shampoo into the sink, having already gotten in big trouble for emptying the first super-sized bottle about three days earlier, I had an acute sense of the hopelessness of the cycle we were in. Hopelessness does not describe how Owen felt however, since that afternoon at the doggie park he tried persistently to get to other peoples’ bottles of water for their dogs, because he wanted to rip them up. I drew him away several times, but finally just as we were leaving he charged over and poured a river of Mountain Dew out of a beautiful green bottle. The dog owners sat watching him in uncertain silence. Who does something like that? (We found four quarters in the car for Owen to give the poor shocked former owner of that Mountain Dew.)

It is not acceptable to pour out expensive bottles of shampoo. And regardless of how much you want it, or how frustrated by not having it, it is not ok to grab someone else’s soda and pour out the contents on the ground. Society is dependent on people NOT committing random destructive acts of this kind.

But Owen does insensitive, destructive, invasive things pretty regularly. And day after day, week after week, year after year, Owen’s family can only redirect and educate him that he cannot do them.

The reader may be offended that I compare anything about my mentally handicapped son to those people who became angry and violent in Baltimore. Certainly, the two are not the same. The actions of a mentally handicapped child-man arise from a different intention, a different set of needs, and a very different level of intelligence. Owen can barely be held responsible for his behaviors, and the adults and children who looted stores must be held accountable.

But still I found myself seeing a connection. People who cannot speak, or feel themselves without a voice, will sometimes use strange and inappropriate ways of letting the world know how they feel. It is our job, as receivers of a disruptive communication, to decide what to do with the incoming information, or to walk away.

As I shampooed Owen’s hair this morning with a sweet smelling shampoo product, I had to smile. Why was it the two super-sized bottles of strong smelling tar shampoo that were pitched – and not this one? Owen really loves ALL bottles, but I don’t think he has ever gone for the gentle-smelling organic shampoo. Could it be that the products that Owen dumps out are not usually the ones he likes to use? Maybe a super-size number of shampoos with dandruff shampoo was more than Owen could bear, and he took matters into his own hands.

Or maybe I am reading this motive in.

But it’s a place to start. I believe Owen will learn to communicate better, slowly, over time, with a lot of encouragement; it is going to be a long process. Frustrated as I get though I am not ready to consider his pillaging a hopeless dead end. So far I have not taken off for California. Like my brothers and sisters the looted and pillaged of Baltimore, I get out my broom to sweep up the streets.

Making and Unmaking Beds

May 4, 2015May 4, 2015wystansimons2 Comments

This April post was delayed a week. My sincere apologies.

It is 5 am. Because a thump noise or two woke me, I am stumbling down the dim-dark hall to see what’s up with Owen. His door is shut, but light streams out from underneath it. Well, good, at least he’s not in the kitchen. Open the door, and there he is in all his glory, naked, seated on the rug, and sifting through the contents of the huge rolling drawer under his bed, stuffed with bits of his past and present treasures.

Owen generally strips in the mornings, and generally strips his bed as well, and the pile of bed linens and night clothing he throws off mounds up behind the headboard, wet, dry, and in-between all mixed together. And so most mornings start with a sorting and hanging-up-to-air-out ritual, with Owen helping. After all these years, and much as he likes routine, Owen still seems uncertain what the criteria are for which thing goes where. He hesitates, dangling a dipe nervously over the trash can, so I curb my impatience and direct him. THESE things go to the laundry, THESE things to the trash, and THOSE things we hang up. Owen hauls the wet away to the laundry, while I pull up the window shade to let rays of early sunshine beat in upon on the mattress and blankets. Then we hurry on to the bath or shower.

I like things better at the other end of the day, when it’s time to make up beds again. Laying down the mattress protector and tucking in a fresh, sweet smelling sheet is a job I never grow tired of, although my back does. It’s satisfying to build Owen a nest. I wish other parts of providing for him were as straightforward as this one.

Before I know it, the cycle will begin again, the stripping and then washing, the airing, the drying, the remaking. Repetitive tasks are seen in our culture as tedious, but they can also be calming. They have a rhythm and an inevitability, a cycle as continuous as ocean waves. Perhaps my mind makes this association because of the recorded waves we play on Owen’s sound machine at night. It’s as if my bed-making arms were the waves, rolling out, rolling in. Pull, drag, dump; pull, carry, hang; pull, fold, and tuck…

As I settle Owen for the night, I am reminded of something I read once in a parent newsletter written by Jon Shestack, father of Dov, a rather famous young man with autism (Strange Son, by Portia Iverson). Shestack described being uncomfortable with his profoundly disabled and agitated son when he was awake, but loving to sit with him and watch him sleep. Then the troubled face was beautiful, the tense body relaxed. Then, finally, he could hold his son in his arms.

There is Owen, all curled up in the covers of a freshly made bed, safe, warm, and relaxed. He has had his prayers and his kisses. I know he is happy – Owen loves to go to bed. For the moment, there is nothing more I “should” be doing to care for him. Well, ok, launder some socks and undies maybe. But until he rips those sheets off again, his restless spirit has everything it needs in a nest of clean linen.

Chow Hound!

April 21, 2015wystansimonsLeave a comment

Owen choosing broccoli over chocolate cake as a little boy

Owen is always hungry. At least, he pretty much never turns down food. He will not eat asparagus these days, and he doesn’t like eggs too much. True he picks the onions out of any dish that they are pick-out-able and leaves them in a pile on the plate. But that’s about it.

As a little guy seated in the front of the grocery cart, I remember Owen reeeeaching down behind him into the cart to grab the broccoli up and gnaw on it as we shopped. What could I say?

Nowadays, he will eat an entire extra-large bag of pears from BJs Wholesale Club in a couple hours if I don’t hide some of them first.

Is he really hungry? Or is this a behavior? Boredom? Some version of sensory under-stimulation that causes him to eat and eat, as if he can’t tell what full feels like?

Another possibility could be that his “Specific Carbohydrate Diet,” (click to read more: http://www.breakingtheviciouscycle.info/), somewhat similar to that trendy word “Paleo,” means that he needs to eat more to replace those filling grains he isn’t eating. I know while I tried eating with Owen for a while the lack of grain bulk left me kind of empty.

Last Friday we had a party at our house that left behind part of a massive chocolate cake. I stored the leftovers for Sunday church refreshments. I didn’t realize that Owen had been raiding the fridge until Sunday morning when I discovered crumbs and a diminished under the foil cover. There will be hell to pay this week, I expect, as the problem sugar/starch molecules work their way out of his system. Carbohydrates like that affects Owen’s mood, and gums up his ability to communicate as it also gums up his bowel. His face is less expressive. Oh – and he didn’t want to eat much all day Sunday.

But I believe in a period of “carnival” now and then. We all do it. Why not Owen too? For one thing, I am hoping he will develop awareness of what feels better – as I hope for the sensitive-systemed eaters in my care. Don’t laugh. Remember this is the kid who chewed on the broccoli tree instead of the chocolate castle cake, long before his SCD Diet began.

This recent fridge raiding reminds me that increasingly Owen notices what he isn’t getting. And after getting mad at him for getting into what I have been sneaking myself ever since Friday – sugar in all it varied forms – I know that it is time for a shift. Owen is 21. He is not a little boy anymore. True, he will always need support, and to be prevented from eating stuff off the floor, or emptying the fridge of its contents entirely at will. But he needs some “self-serve” options. I determined that will set up that snack cupboard that I have been intending to set up for him, one that he can get to from OUTSIDE the kitchen.

And now that the party cake and candy are gone (what a shock for my kitchen raider early Monday morning!) we will all have to cope with the intense sugar cravings and frenzy that happens to all of us here at the Simonses’ when we have strayed.

Sigh. Could go for a piece of that chocolate cake right now…

IMG_0234_crop — The new Owen snack cupboard — the trick will be keeping it stocked…