Tag Archives: #autism

solar system

Solar-system-orbits-ESO1

I am again on Martha’s Vineyard with Jacob, my autistic godson and his family.  The story of this family is a series of miracles unfolding over the past fourteen years.  Besides Jacob and his parents Jo-Ann and Derrill, the house now holds Charlie, Jo-Ann’s 92 year-old father, and Mary Helen, her sister.

The sun around which we all orbit is Jo-Ann.  She is the lodestar, the gravitational force, the heat and the center of this system. The choreography of this complicated and extraordinary family is a little like what Twyla Tharp said about Bach: “”Everyone understands that there’s Bach, and then there’s most everybody else,”  citing the composer’s “architecture, righteousness, justice, control, possibilities — the richness and variety of his imagination. He encompasses all. I call his work ecumenical. No one has more range.”‘ Bach and Jo-Ann. Music and mothering.

What I would add to this list is devotion.  To an unendingly curious, determined, loving search for anything that will make Jacob’s life and his connection to his world as rich, varied and beautiful as it can possibly be.

Seeing this requires being with Jo-Ann, Jacob and Derrill long enough to move past the sheer overwhelming enormity of what she and they are doing daily, hourly. It is too much. We don’t want to let in how big the task is, how the entirety of a life can be taken up by this rigorous caring care. To witness this without looking away requires its own kind of bravery.

I don’t look away. I want to see and feel it all.  Maybe that is the best thing I can offer here.  A steady loving witness.  A willingness to keep looking and to be curious and soft. To see things anew each day, each moment.

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Jacob

jacobPhoto:  Derrill Bazzy

He’s fourteen now.  My beautiful godson.  I have not seen him for nearly six months.  Too long, too long.  What is an autistic fourteen year old like?  Like an adolescent?  Like an autistic person?  I don’t honestly know.  I can only tell you about this fourteen year old, this precious Jacob.

Every day is different.  Every day has its own map.  In the maddening sameness of the “isms,” if you look, if you listen, if you are willing to be present, are the differences.  If you can see beyond the swing spinning, the ball juggling, the repeating topographic form of the surface behaviors, there are the differences.

Jacob is not the “isms.”  He is not the behaviors.  He is not the absence of language. He is, in part, to be found in the differences:  the little shadings of movement, engagement, sound and play that form the underscore of his day, and ours.  But really, he is not defined by those either.

Maybe this is why I love him and my times with him.  His cannot be captured by any definition or category, not even autism.  He is pure being, and to be with him, really with him, that is what we have to become as well.

Is it exhausting?  You bet. Humbling? Absolutely.  It is like sitting in meditation ALL DAY.  Rigorous, demanding, sometimes painful.  Because WE DON’T UNDERSTAND, not really, but we have to keep practicing, keep our bottoms on the cushion, so to speak.  Breathe in, breathe out.  This is his gift to us, and yes, ours to him.