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.


Making and Unmaking Beds


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.