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We were home for Thanksgiving this year – and good thing, since I spent most of the week sick, lying in bed.  I had planned on connecting and creating with my children home for the holidays.  I had planned on building a garden with Edward, and attending a musical downtown, and cooking a few nice meals.  Instead I rested, and scrolled grumpily through people’s FaceBook postings about what they were grateful for, at a loss for what to write.

Owen was having a vegetative week himself, less communicative, less sparkly, and every bit as mulish and early-rising.  I’ve said that I write these postings to share our life with Owen.  I’ve said their purpose is to allow outsiders a peek into what it is that is subtly wonderful about a kind of person and a kind of situation that many regard with sadness or disgust.  This implies that I feel grateful for Owen in my life.

But some days you’re more inspired than others.

As I lay on my bed, scrolling ungratefully through grateful postings of lists of gratefulness, the task of finding my voice this Thanksgiving week seemed harder for the public outpourings.  A little public gratitude goes a long way, I thought.  Even if I could find the right words, what use to throw them into the din?  Perhaps it was just my prone position that made me sour.

Tomorrow my niece gets married to the young man that she adores.  And Owen will be there, to generate inappropriate noises, and fidget, and generally bless the occasion with his presence.  Nothing that he does in such a public setting is likely to be cute, or clever, or to provide any window into his inner Owen.  But we who care for him know an angel lurks there under that unlikely exterior.

And as with the grain of sand and the oyster, the pearl generated is worth the irritation.

Is the oyster grateful?



P.S. I was extremely grateful for my bed.  Also for my husband, a true partner in times of trial and a good cook.


Words Again


“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 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.