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Above my studio desk is tacked a pen and ink sketch of a woodland shoreline. “To Mother, With dearest love from Marianne”  reads the inscription at the bottom, a Christmas gift my mother to her own mother. When I look at it, I think of the bond that my mother and her mother shared, and the many letters that traveled between them. Below this, also tacked to my wall, a huge paper is filled with a child’s water color of a figure and the words MOM FREYA MOM FREYA.

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When my daughter painted that joyful pink and purple figure, its stick arms and fingers spread wide to give or receive a hug, was it an image of herself  or of her mother that she captured there?  The lines that form the boundaries of self-hood can blur. Who is who? What parts of me overlap with you, in a given moment, and what parts of you are responsible for me?

Misunderstanding, trampling the boundary between self and other seems part of the human experience. At least this is what I have witnessed in my own evolution as a human being. Not only between mother/father and child, but between lovers, in academia, in art, in business.  A mother takes over her child’s wedding, a father tries to turn his son or daughter into the athlete he never was, a surgeon is overbearing, a nurse bosses the patient in her care, a receptionist takes out her tooth pain on the next caller. Every day, in 100 ways, we crowd each other, mostly unintentionally. How easy it can be to forget that every person we meet has a unique thinking and a singular experience of reality.  Especially those we know the best and love most dearly.  We can lose track of our sacred separateness – until a clonk on the head reminds us how we transgress. But only in a heavenly marriage have two the option to become “one heart and lungs.” Any other time, try to start breathing for someone else and suffocation is the only possible result.

Dealing with a person who is mentally disabled, who cannot speak for himself,  invites the blurring of boundaries. As we head into winter I try to figure out: is Owen cold? or is it just that I am cold?  Owen’s way of showing that he is too hot is to be cranky until someone removes a layer. Why doesn’t he just remove a layer? Given his tendency to take a tour of the patio mid-Saturday-morning-bath, even on a recent 20 degree morning, his mother is inclined to guess that his sensory system does not work right. But those who do not speak or care for themselves, even those whose sensory systems do not relay accurate messages, can still have a great deal going on in their brains.  Wants, frustrations, fears. It is up to those caring for them to intuit needs and desires, guide behavior, and yet to respect their autonomy.

For Owen these past weeks of my recovery from surgery have been a trial I think.  It has been both amusing and frustrating to watch Owen and the bulldog Trum each misbehave as kind volunteers and helpers attempt to take them out for walks. Trum stops midwalk to turn and stare at the person at the other end of his leash, Owen stonewalls about leaving the house, or walking down the trail in the woods. Of course Owen stonewalls for me too, in normal life. There could be so many reasons for his uncoopertive behavior.  He could be voicing the eternal “NO!!!” but he could just have a stomach ache. I cannot take ownership of my child or my dog’s ungrateful behavior. I can only be grateful that there are friends willing to step in and try to shoulder the burden of running our family.

My job is to heal, something that is taking far longer than I ever expected.  As I try to resume my normal life the smallest things such as the way I snap the sheets when folding them, or swoosh the water down the drain after Owen’s bath, or chop the carrots is rough on my healing armpit muscles. I seem to keep re-injuring tissue not yet healed. Even small movements like typing and writing weary the scar tissues there. Why is it taking so long?  No one has suggested an answer. Maybe I am abnormal.  But I have no control over this either. My armpit muscles and myself share a lot of turf, but I cannot change them. I want them to hurry up, they seem to want me to slow waaaaay down.

When I pictured how our family would get through this challenge, I worried about how reactive Owen might be to the changes, and what form his acting-out may take, whether he would make horrible messes for unhappy people to clean up.  You would think that a woman who blogs under the banner of “embracing chaos” would be more chill about letting go — but it’s one thing to embrace your own chaos, and another to ask other people to do the same. I have watched people come and cook, and go buy groceries, and I have witnessed people come and take recalcitrant Owen for walks, and wash our laundry now for almost four weeks. It is humbling to allow those boundaries to be blurred, and to receive care. And it is hard.

We code events in life as good or bad, but how do we really know?  An unfortunate event makes unexpected growth or relationship possible that was not possible before, or without it. We want to think we know, but there is so much we do not understand. What seemed chaos falls into order.  What was intended well can be revealed to be destructive. The boundaries can blur.

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I remember a painful phone conversation I had with the author of this painting, in which she was able to tell me how much it angered and hurt when I said what I thought was the reason for her past adolescent behavior. Even though the event had happened years before, it felt so good to her to speak of it, to cry over that broken boundary between us, to ask how how could I presume to know what she herself was still figuring out?  How indeed.  Thankfully, boundaries blurred and broken, like aggravated muscle tissue can be healed, with time, with rest. With apology.

My mother struggled with boundaries, a tendency to try to manage what she could not manage, or to control what was not hers to control.  I remember her telling me that silver jewelry was for me, based not upon what I preferred to wear, but on my skin tone.  For a while I did wear only silver jewelry; it didn’t hurt me. She only wanted me to feel beautiful — missing the fact that I already did. In her last months on earth I remember watching her advise a family member how to dress better, what category she belonged to, based on her reading of the book Color Me Beautiful.  My 20 year old self was outraged and called her out on it in words I cannot remember. She did not deny it — but wept.

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Wonder where the heck I am coming from about a married pair becoming like one heart and lungs? It’s better explained here by Curtis at Off the Left Eye.

Bad King John

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King John was not a good man –  

He had his little ways.  

And sometimes no one spoke to him

For days and days and days…                                  A.A.Milne,  Now We Are Six

Owen has been sending me messages. He might not have a lot of language accessible, but he has his little ways. Which is probably why I found myself reciting this poem in meaningful tones. I am hunting for the toothpaste and find it, chopped. Photos of his siblings lie in a pile of cut pieces.

A few days ago Owen wouldn’t come down for dinner when called. I had to go upstairs, into his room, where he was bending over  his collection of plastics in the big rolling drawer under his bed, chopping away.  After a peaceful dinner together, when he seemed finished eating, I cleared the food away, and sunk down exhausted to watch a movie. I invited him to join me. But Owen didn’t go for The Fisher King with Jeff Bridges and Robin Williams. While I was absorbing the bizarre plot, he stood outside the kitchen reaching across the counter eating more and more of the green beans and green peppers than any reasonable person should even want to contain. So there went tomorrow’s lunch.

“Seems a little excessive, Owen,” I said as I harumphed up from my movie. “Been on my feet this whole time,” I sulked to him, scooping what was left of supper into plastic boxes for lunch. “How many green beans can one person hold?” I asked rhetorically. There’s stress-eating, and there’s eating from loneliness, and then there’s eating to tick your mother off. To show that you can, perhaps. To assert independence

King John was not a good man,  

  He lived his life aloof;  

Alone he thought his message out      

  While climbing up the roof.

He wrote it down and propped it up

  Against the chimney stack–

Since Owen didn’t want to watch a movie with me, I figured it was bedtime. But once upstairs Owen didn’t want to get undressed. He didn’t want to come into his bedroom either, but stood out in the hall in an abstract attitude.

“You ignore me, I ignore you.” It couldn’t be plainer if he had written it out.

Amazing that you could spend hours, days, years even, caring for someone’s body needs and remain oblivious of his social, psychological, emotional, or spiritual needs. Shocking to recognize it – and annoying! – but yeah, it’s true. Knowing Owen as well a I do, I can still easily miss cues. I can find myself tuning him out mentally while I am busily caring for his physical needs. When I realize that a set of behaviors are a message, it’s a relief – but some part of my mind still feels manipulated, still asks “Why didn’t you just say so?”

King John was not a good man –

  He wrote his message out,

And gat him to his room again

  Descending by the spout.

Communication is just good. Any old kind. That’s the thing. And I am so glad that Owen persists stubbornly on, trying to tell me stuff when I am too tuned out to notice or listen or see what life looks like from his perspective. Dinner at home with just dad and mom is pretty dull compared to what he grew up with; dinner with only mom who is tired and plunks down in front of a boring movie is even worse. It’s really lonely to be tuned out or ignored – much worse than actually being alone, in your bedroom.

I was reminded this weekend how much Owen likes to have his tribe around him when half of the family came over for a Redskins game Sunday afternoon. Owen had been SO BUSY looking everywhere for hiding Christmas packages I think, hunting through the packets in my closet and my studio, pulling out a package of candles, throwing half of them into the trash…aaarrggghhh. I took him and the dogs for a walk to give his dad some peaceful visiting time, and when we came home there was a fire in fireplace, and family gathered around the television, roaring appropriately, and Owen became very calm.

I want some crackers,  

  And I want some candy.   

I think a box of chocolates

  Would come in handy.  

I don’t mind oranges,

  I do like nuts    

And I SHOULD like a pocket knife – that really cuts.  

  And, oh!  Father Christmas if you love me at all—

King John had his own dreams for Christmas (link below to read more about him), and Owen seems to share many of them. But I wouldn’t be a bit surprised to learn (if he were able to tell me) that for Owen, the biggest thing on his wish list is to be surrounded by his family — with lots of oranges, nuts and chocolates thrown in for good measure.file_001

 

 

 

 

Not familiar?  To read all of A. A. Milne’s whimsical poem about Bad King John and Father Christmas, click on this link. Continue reading

All Flugged In

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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.

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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.

 

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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.

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Words Again

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“A boy,” says Owen and mom high fives him.  After a long period without any words, words are so good to hear.

We are getting dressed again.  Owen’s custom is to remove all clothing for his most productive encounters with the toilet.

“A boy?  What’s his name?” I inquire, trying to encourage him, to keep the lanugage going.  I pick up Owen’s shirt.

A look of pause.  Blocked circuit.

“Jack?  Jack in the beanstalk?”  I ask, bending to retrieve Owen’s undies.  Undies are first off, and so bottom of the clothing mound on the bathroom floor .  I look into his face.  “Or is he Owen?  Is the boy Owen? Owen Simons?

“Jack in de Beanstalk.”  He stretches his arms out across the small bathroom, wall to wall.  Communication.  Who knows what he really wanted to say – and he has probably only echoed me.  But he said something, and I understood the words.  That has to feel good.

A week or so later, Owen comes up out of his morning bath full of words!  Nouns!  pouring out of him as the water runs off his body –

“A hit.”

“A hit.”

“Lemons!”  “Lemons.” (Owen has been eating lemons…)

“BJs”  (did he really say that?)

“A baby.”

“A boy.”

“Johnny.”

“Johnny Appleseed.”

“A pumpkin.  A pumpkin.”

“Jack.  Jack in de Beanstalk–”

There are many more.  I try to commit them to memory, no paper or pen here to capture them. My brain is reeling, trying to make meaning of them all, trying to hear them, and him.  Owen seems as surprised as I am, his eyebrows raised, riding the tidal wave of words – a stream of nouns, of thoughts, of statements perhaps.  There is an urgency to the way he delivers them, quiet emphasis, as if, the gate having opened, he has this chance now to tell me – everything!  Some words I have never heard him say before this moment, some are familiar old friends, and just as mysterious now as they were every other time he said them.

What is he trying to say?  What flipped the switch so that he could access words at this particular bath time?  It seems important to enjoy the gift rather than worry how to interpret it or how to make it happen again.  Owen’s body is a complex malfunctioning machine that neither he nor I can control, either by desire or environmental management.  I spent a lot of years trying.  Trying to understand body rythms, and words. Writing pages and pages, words filling journals, longing to understand so I could control my child.  Sanity was to let it go.

Whether I could understand or not, I loved this bath time outpouring.  I hope it happens again.

Just in general, words can be good or bad.  It’s been difficult falling into this fall, with the decreasing sunlight, and the emptier house.  My frustration level tends to run high. My emotions generally run to words coming out my mouth, or onto paper.  Life in the care of a nonverbal person can be lonely.  Caring for a nonverbal person who’s feeling mulish is lonely and irritating as well.

I feel sorry for my neighbors these afternoons, as Owen and I and the dogs try to get started on our quasi daily walks.  We have trouble making it down the sidewalk, then the driveway, Owen stopping, balking, the dogs pulling in every direction, their leashes wrapping our legs.  A dramatization of my mental state – stuck, tied, trapped. The words flying from my mouth are complaining and cross, and they grate on my own ears as they rise up out of my psyche – bitch, bitch, bitch.

Walks like these ones start out rough.  But generally they end pretty mellow, thanks to the influence of trees and moving air, and sandy dirt under our sneakers.  Thanks to the silent communication bodies make, moving in the same direction, a tacit unison of muscles and bones.  Thanks to the blood circulating, wordlessly, carrying away the tired old from the cells where it was stuck.  Clearing, cleaning. Stuck is bad.  Movement is good.

And words are good.  Mostly.

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Dreams

 

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Hi Wystan! I had a very vivid dream last night about Owen! We were having dinner at your house and it was conveyed by Owen that he wanted everyone around the table to say something about him. As people said something like: you have really cool hair, or you are a really great guy, or I like the way you help set the table and so on…his head came up, he made eye contact with each person, smiled and then slowly and gently started having tears roll down his cheeks. Of course, we all started silently weeping too…After that was done, we all began to talk at once and eat but Owen stood there and just smiled. I don’t know what it means or if it should mean anything but it has left me very moved and I keep thinking about it since I woke up. Please share this with Ed. Hope you folks are doing well!Jim

When I began to fall in love with Owen’s father, the chance of our having a handicapped child was the farthest thing from either of our minds.   Wasting no time, like the two people who had seen too much of the dating scene, we handled the important stuff right from the first date: God and air conditioning preferences. Romaine lettuce over iceberg. We shared eccentric relative stories, family histories, memories of special lake vacation spots.  But even though I had a special needs brother and Edward had a special needs brother, the idea that we might one day be blessed with a special needs son simply didn’t make the agenda.  Amazingly that subject never came up.

We may not have prepared ourselves, but some other force seems to have been preparing me. Near the end of the four seasons while Edward and I fell in love and decided to marry, (I in grad school in Illinois and he in Maryland), I woke one morning in Chicago from a vivid dream.  I smiled at the sunlight reflecting on the ceiling of my room in Ridgewood Court.  Eyes open, I could still see the face of a baby.  This baby had been laughing down at me as I held him/her suspended in the air, joyfully – big red curls – a wonderful open mouthed smile.  I woke knowing that that baby’s name was Owen.

Cool dream!  It left me with a happy feeling — and I didn’t think too much more about it.  I may have thought “Wow! maybe Edward and I are going to have a red haired child!”  That wouldn’t be too surprising; Edward comes from a family of redheads.  I do remember later wishing for a curly red-haired daughter, tossing some coins into some grotto pool in Bermuda for fun during our honeymoon.

When, less than a year later, I was pregnant with our first child, we whittled the choices down to two Welsh names: Bronwyn and Owen.  Why Owen?  Did I remember the dream I had had?  I don’t know. It had to have been in the background of my consciousness at least.  When our first child turned out to be a girl with reddish curls I remember thinking that the dream I’d had must have been of her.  I remember Bronwyn’s first laughs vividly; she was a quick learner, a responsive, delightful baby.

Bronwyn had reached the advanced age of 13 months when our second child was born, a boy. We named him Owen.  However this baby looked nothing like the cherub in my dream, and I suspect had forgotten all about it. I was pretty tired and distracted by then.  Owen was a difficult fellow, kind of frail, low muscle tone, slow to develop, and always, always crying.  Months later, I am sure his first laugh was a momentous occasion – we waited a mighty long time for it – but I don’t remember it now.

Eventually little Owen rounded out, and did gurgle. By the time he was two he had juicy red curls and a cherubic face (when he wasn’t fussing).  He developed a wonderful laugh, and we did love it (or any responses from him) then or now. But for a long time I forgot that dream from my graduate student year.  Although the photo albums don’t show it, there were years of frustration with my unusual child, anger and un-acceptance of who he is, and what the situation was going to require of me.  I didn’t want to be doing that job, and the thought of being trapped spending years of my life caring for someone’s physical needs both suffocated and terrified me.

Today, as I reflect on the dream and the reality of Owen, I have to ask, what was it all about? Why did I have it?  If that dream was caused by body chemistry, love hormones, daydreams, what I ate, or other chemical factors alone, I cannot account for how that is possible.  The chemical explanation does not also explain the stories of many dreams I have heard about in which future events are suggested (sometimes to people who are not important players in a drama) or visitations made.

But if, at the other end of possible perspectives, we explain such a dream as guardian angels trying help out with a preview of one’s physical future, that still doesn’t explain it to me.  What possible use can it be to a human being to know a few years in advance that she will have a child with red hair and a cute grin?  Why would angels bother? Seems extremely unimportant in a world of human experience and suffering.  For me, any “explanation” of a dream like this must go deeper than a prediction of physical events or baby name suggestions.

But looking back on it now, from this 20 year perspective, I find I am comforted to re-see that baby face from the dream.  Perhaps the dream of Owen was preparation for hard times.  A reminder.  A sign, to look more carefully, to consider what lies within those things eyes can see.  Perhaps it was for right now, to remind me of what lies within the form of that less-than-cherubic young man I currently care for.  Getting up daily at 5 or 6 am, to help him strip his bed and climb into a bath, it’s easy to lose sight of anything larger or deeper than the physical weariness of chores in a darkening fall season.

As I prepared to post this piece this week,  I hunted through the albums still spread across the dining room table from my early September efforts to get family albums finished.  As I poured over, back and forth through pages of Owee pictures, looking for the “right one” to post, I realized I was looking for a photograph of that dream baby face.  Of course Owen never looked exactly like that dream.  And he certainly doesn’t look like that now.  That is, really, the point I say to myself.  The dream is a reminder of something so precious, something interior, that we don’t get to see all the time..

For me the inner Owen, the hidden part of him that is not described by legs and arms or his red curly hair, something I get flashes of now and then in his eyes and smile is well-described by the dream I had three years before his birth.  An angelic gin, drooling down on me and blessing my life, blessing our lives, with his bodily fluids and his presence in it.  Owen’s mental age is guessed to be very young – maybe three years old.  As he grows, the difference between his body and mind becomes more and more problematic in society – baby-men don’t fit in so well in this world.  They are not cute.  But when Owen’s body dies, I do believe his still three year old soul will travel on to the next phase of his life, and finish growing up there.

Given how unique every single human being is, given how much it takes to educate and civilize even one,  I simply don’t believe that all that remarkable individuality would be wasted on a 60, 70,80 year (or less) life span.  What a waste!  And nature as I know it, does not waste.  I believe there’s more.  In Owen’s case I expect he will finish his mental growing up in his next phase.  And since his life and mine have been so tied together here in the first phase, I really hope to get to see him in the next one.  Maybe we can get someone to explain the purpose of all he went through here.  By the time I am meeting up with a grown up Owen, maybe I will already understand.

And maybe it was a good thing that Edward and I didn’t connect the genetic dots, during those early days of our relationship.  I can’t regret our lack of worry.   It would have been too bad to go into the relationship anticipating future problems.  What could you really say?  Would I have chosen not to have him, knowing what I know now?  That subject is much more difficult for our kids, who two generations into the subject of special needs have the thought of it very much at the center of their consciousness.  Perhaps there is one real essential, when you are choosing a partner to share your life with: what do you believe about Life?  I mean where life comes from.  Whether it goes on forever.  Or stops with the end of the heartbeat?  To see all human life on earth as the first chapter of a continuum changes  what you do, and about what you put up with, after that.

Edward and I both figure this is just Owen’s first chapter, and ours too.  That thought buoys us up, and mitigates what would otherwise be unbearable sadness that this diminished life of shredding plastic and toilet accidents is all he gets to experience – and all we get to experience of him – and of life ourselves.

Is there life after life?  Do people who lived and died loving and open-hearted now as angels seek to bring us comfort? Do angels work unseen to inspire us onwards out of rage, incompetence, and melancholy?

How can we absolutely know?  And yet – we dream.

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Sleep Like a Dog. Then Wake Up

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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

“Everyone’s Favorite Guy—“

Crunching along side by side over the iced snow, Owen and I have our eyes fixed on our footing.  Our path is really no more than a trail of dog and human footprints, now a lumpy mess to walk on.  No sound except birds and the crunching.

Out of the blue Owen says, “Gas-ton.”

Seems like a cue, so I run with it.

Gastohnnn! I respond in the voice of the sidekick LeBoue, “you’ve got to pull yourself togeeeether!”  

Disney’s Beauty and the Beast is one of Owen’s favorites. Glancing over into his down-turned face, I am pleased to find him lit up with a grin.  That’s the only encouragement I need to bellow out into the frozen woods–

Gosh it disturbs me to see you, Gaston, 

Looking so down in the dumps!

Every guy here’d like to be you Gaston

Even when taking your lumps—“.

 The words, the characters, have been memorized without trouble over many years of supper-making to the tune of Disney movies.  We have a theater-loving crew here,all of them fond of costumes, accents, and ham.

But it’s easy to forget this spoonful of sugar.  All too easy for me to get cranky when dealing with Owen, to become instead plain old bossy and impatient mom.  Better rested, I remember Mary Poppin’s advice –  find that “element of fun” and snap! the job’s a game!  Well, no not really, but it is a whole lot more pleasant all the way around.  A spoonful of sugar beats a bowl of vinegar.

And the ham in me loves to make Owen wake up, tune in, listen and laugh.

“There’s no man in town as admired as you –

You’re everyone’s favorite guy.

Everyone’s awed and inspired by you,

And it’s not very hard to see why –!”

Maybe accents give voice to someone who always struggles to find his own. Sometimes Owen will quote to us from movies too, although these days it’s more likely to be a single word.  It is an imperfect communication device for us.  I have heard him growl, “Dee beeeeast.”  Not sure if this would mean that O. is remembering a scary thing (from movie? life?)  or telling us that he’s feeling pretty frustrated about something himself.  We all have a beast somewhere in there.

This past week I took Owen’s sister to check out college musical theater programs in Boston and Philadelphia – the reason this posting is so late.  The people in the arts communities we met were generally charming, open-energied individuals, people I can easily imagine knowing how to respond to Owen’s sort of person.  In fact I think it would be a beautiful friendship.  Makes me think that we should hook those two worlds up together more often.  Actors love to make people laugh, and the good ones are trained to be highly observant, read cues, and fill in the blanks.  That’s what it takes.

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