Jacob and Paula

Photo: Superhero at rest!

Photo: Jo-Ann Eccher

I am on Martha’s Vineyard this week visiting Jacob, my autistic godson, and his wonderful parents, Jo-Ann and Derrill.  I have not seen them since April.  I am as interested in what has changed in me as what has changed in Jacob.  He is taller, I am not.

Perhaps it is the Body-Mind Centering dvd’s that I have been watching – soaking in and relishing Bonnie Bainbridge Cohen’s brilliance and insight.  Or maybe that it is the ragged end of summer, and I am so happily relaxed to be on the island – walking down to the sea at least once a day.  Maybe it is some fuller acceptance of the limits of my understanding (at least the cerebral cortex variety) or some deeper relaxation around my role in Jacob’s life.

I have let go of a lot of doing, let go of any kind of outer directed goal.  I am doing a lot of listening and more than that, a lot of feeling.  Here is what I am finding this time:  when I hold the thread of my own engagement and curiosity, my time with Jacob has an ease and flow that I have never experienced before.  When I am more outer directed – that is, looking to do something, fix, change or improve something, things can get sticky.

Jacob’s predominant autism “ism” is his spinning of a ball.  Sometimes it is close to his mouth – a tiny spinning involving the third and fourth fingers  of his right hand- complex, fast, rhythmic.  Sometimes it is tossing the ball in the air repeatedly.  Taking a page from the brilliant work of Phoebe Caldwell, I have my own ball, and when we are together, I play with my own ball – sometimes directly echoing and duplicating his rhythms, dynamics, sometimes introducing some other movement of rhythm that catches my attention.  What I am doing mostly is enjoying myself being with him, engaging in my own play.  Sometimes that “with-ness” is direct, other times, more indirect – maybe we are facing roughly the same direction, sometimes side by side, sometimes farther apart, echoing each other’s sounds, movements, balls.

In one of Bonnie’s dvd’s on the fluid system, while talking about the fluid structure (marrow) of the bone, she mentioned finding and returning to one’s own “drone.”  In music there’s the rhythm, the melody and the drone, like the harmonium in Indian music.  The drone is your own balance, your own connection to the deepest sense of yourself, the core of your being.

I think that is what I am finding this time with Jacob.  Instead of becoming unbalanced, which could look like distraction, frustration, confusion or uncertainty, I am feeling balanced and happy, as if the core of me connects to the center of the earth and to the galaxies above.  And I am finding Jacob there, in his drone, his center, his clarity about who he is and what he needs.  Not in language, or touch, but in delight, curiosity and the moment.

be kind (a gift from The Writer’s Almanac)


Be Kind

by Michael Blumenthal

Not merely because Henry James said
there were but four rules of life—
be kind be kind be kind be kind— but
because it’s good for the soul, and,
what’s more, for others; it may be
that kindness is our best audition
for a worthier world, and, despite
the vagueness and uncertainty of
its recompense, a bird may yet wander
into a bush before our very houses,
gratitude may not manifest itself in deeds
entirely equal to our own, still there’s
weather arriving from every direction,
the feasts of famine and feasts of plenty
may yet prove to be one, so why not
allow the little sacrificial squinches and
squigulas to prevail? Why not inundate
the particular world with minute particulars?
Dust’s certainly all our fate, so why not
make it the happiest possible dust,
a detritus of blessedness? Surely
the hedgehog, furling and unfurling
into its spiked little ball, knows something
that, with gentle touch and unthreatening
tone, can inure to our benefit, surely the wicked
witches of our childhood have died and,
from where they are buried, a great kindness
has eclipsed their misdeeds. Yes, of course,
in the end so much comes down to privilege
and its various penumbras, but too much
of our unruly animus has already been
wasted on reprisals, too much of the
unblessed air is filled with smoke from
undignified fires. Oh friends, take
whatever kindness you can find
and be profligate in its expenditure:
It will not drain your limited resources,
I assure you, it will not leave you vulnerable
and unfurled, with only your sweet little claws
to defend yourselves, and your wet little noses,
and your eyes to the ground, and your little feet.

“Be Kind” by Michael Blumenthal, from No Hurry. © Etruscan Press, 2012. Reprinted with permission. (buy now)

thank you Jacob, thank you Marion


943542_522024324525996_2036370784_nJacob’s mudras, Jacob’s dance

Yesterday I had the privilege of visiting our friend Stanley who has advanced Alzheimer’s.  He is at home, being cared for by his family and a full time caregiver.  Stanley has no speech, nor can he organize his movement and is therefore confined to bed.

My mother died of Alzheimer’s six years ago.  I know something about the arc of the disease, the inexorable progression.  I also know about its gifts.  I wrote this in a story about her called Mother Lode“You never told me you were leaving. That leaving would happen with startling, irregular cadence, an evaporation of being from body, an unsnapping of essential self from the edges of a shrinking world. You never told me that you would leave and stay, all at once.”

At the end, when there were no words, no recognizable language of any kind, there was still her dazzling smile.  It was as if she had been winnowed down to this one essential expression.  In that smile was joy, appreciation, even peace.  Grace and beauty where everything else had been taken. It took my breath away.  She taught me about the mystery of presence and absence wound together like the Mobius of the heart.

Jacob, my autistic godson, has taught me many of the same lessons.  We are going to see Jacob and his family next week.  I am so looking forward to seeing hm, to what he will teach me and what I will discover in my time with him.  Jacob teaches me about deep listening, stillness, and patience.  He teaches me to look beyond the outer shape of movement and sound into the subtle layers and reverberations.  He shows me what is important to him moment-by-moment, and how to engage where he is, rather than where I want him to be.  Most importantly, how to stay in my own body, my own breathing, my own heart.

Back to Stanley.  He was making a blowing sound with his lips.  It is strong and clear and has force, focus and expression.  I made the sound to him and that caught his attention.  He made the sound back to me.  We had a long, blowing conversation, with smiles and even a chuckle.  I added a blowing sound like a horse makes and he found that funny.  I added some touches on his hands and feet and legs, watching for his responses, his engagement and curiosity or discomfort.

What I felt with Stanley is what I so often feel with Jacob, what I felt with my mother – enormous blooms of love and gratitude.  I have entered the room of their world.  My “work” is not to redecorate or improve upon what is there, but simply to be present with curiosity and willingness, to follow them with my heart and offer connection. That is the whole dance.