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!…
At Owen’s graduation July 2014“He’s a wittle pinata!”
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.
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?
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? andis he doing it on purpose?
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.
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.
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…
The new Owen snack cupboard — the trick will be keeping it stocked…
Owen takes this directive seriously. When the clocks change and Mom begins to drag him from bed an hour earlier, it unsettles him (I think) and he responds by waking even another hour earlier.
At 5am (formerly known as 4) he can be found in the hallway, in the bathroom, in the kitchen rattling through the recycle bin.
Why?
Someone told me once that if I asked “why?” there would always be someone else wondering the same thing, who would be glad I did. No such thing as a stupid question. I doubt this.
As the weeks march on into spring, the birds waken earlier, presumably to keep Owen and me company. The mice make noises in the walls that I didn’t hear before – or do they? Do I imagine it? what IS that sound? I find myself jumping from the bed covers and standing poised in the darkened hallway about oh 4:30 or so, straining for the sound that woke me. As if I had become one of the crazy aunts James Thurber writes of in My Life and Hard Times –- “Hark!”
Luckily Edward sleeps pretty much like one of Thurber’s uncles, rumbling along peacefully under the soothing influence of the sleep apnea machine. Am I waking because Owen is awake? Are we that psychically connected? Or am I waking him up – because we are psychically connected??
Are we psychically connected?
Springing forward with the tweeting birds and chewing mice (squirrels? bats?) and wandering Owen leaves me rattled at this time of year. Luckily I can and do visit my doctor for some gentle homeopathic remedy to break the cycle of madness. I will be able to sleep again, and so will Owen. We will adjust. But – wouldn’t it be easier if we left the clocks alone?
I do seem prone to these sorts of questions.
Instead, our government intervenes, changing the time of Owen’s meals, changing his rising time, his sleeping time, and therefore his body chemistry and digestive patterns. And, because they cannot understand why it works, it appears they may now prevent our access to the homeopathy, this gentle energy medicine that helps him cope with their intervention, and helps us to cope with him.
This week’s post is late. I have been frozen it seems by incoming very terrible and incoming very wonderful news (one the entwined deaths of a couple I never knew, the other birth of a grand-niece). I feel like a snake after a huge meal, overwhelmed by what I have taken in, passive and digesting. I wonder if this is how Owen feels on a holiday weekend, with all the positive and the disruptive stimulus. But the holiday is over, and his mom is still blank, adrift on facebook, not getting supper on the table on time.
Bad news makes the presence of innocence more noticeable. Contrast intensifies our appreciation. Owee woozlings (when Owen lays his face on someone’s neck or shoulder) have increased value. Owen isn’t easy, but he is gentle and pretty sweet even when he is chewing up plastic tomato pots or cutting my cellphone charger cord in two.
Over Easter weekend a dear friend sent me a Wall Street Journal article that I share with you here. Please enjoy a peek into another world, captured here by Sohrab Ahmari, in his interview of Jean Vanier, a remarkable, gentle man, and founder of The Ferns (in Paris), and L’Arche movement worldwide.
“The men bought a trick mustard pot with a spring in the lid that would jump out when opened. ‘Raphael, he loved that,’ Mr. Vanier recalls. One day a state inspector visited the house, and Raphael ‘would push the mustard pot, inch it forward toward the inspector, and he finally opened it—and there was laughter! That was at the heart of everything…’ “
– Sohrab Ahmari, The Gift of Living With the Not Gifted. (Wallstreet Journal, April 3, 2015). http://on.wsj.com/1BYKdBb
Last night Owen went to see a show of student artworks. Sculptures. He loved it.
This piece is called “The Revolutionary” – a young head on an old body. The only bad part was not being able to touch them. Even standing too close is frowned on in the art world, let alone hovering and patting.
Unless the artist in question is your sister Bronwyn.
Owen, always a restless fellow, inclined to sudden pirouetting and wanting to touch or retrieve items, or straighten them out, can be a stressful person to take into a museum environment. But last night he was pretty calm, and it felt right for him to be there with us.
Still, I wondered, as we drove home. It was Bronwyn’s first show. Was this for her yet another time when Owen’s needs dominated the family scene, distracting mom and dad’s attention? They do, even on a good day. You can love someone and still feel conflicted.
So after we had come home, I texted her to acknowledge that.
“I feel the exact opposite of a loss,” she texted back. “I’ve always privately bonded with [Owen] over the way we like to touch material. I think we’re both very sculptural, and I was thinking about the way he touches faces when I was building mine…”
Embracing Chaos 
