PERSPECTIVE
I get my best reading done in the early morning hours,
especially while sitting in my orange chair tucked in the corner of the loft.
The stillness in the dawn, and its soft light spilling through the blinds,
awakens my mind to new thoughts, ideas, and senses as I absorb the characters
and words before me. I have never read Kafka
on the Shore, nor have I heard of Haruki Murakami, but something in his
title catches my attention. I open the book and begin to read:
“…Sometimes fate
is like a small sandstorm that keeps changing directions. You change direction
but the sandstorm chases you. You turn again, but the storm adjusts. Over and
over you play this out, like some ominous dance with death just before dawn.
Why? Because this storm isn't something that blew in from far away, something
that has nothing to do with you. This storm is you. Something inside of you. So
all you can do is give in to it, step right inside the storm...You really will
have to make it through that violent, metaphysical, symbolic storm. No matter
how metaphysical or symbolic it might be, make no mistake about it: it will cut
through flesh like a thousand razor blades...”
Murakami’s imagery crashes against the canvas of my mind
and I am thrust into my own memories—my own storms.
“Hey buddy, we’re going to the art museum. Do you want
to go to the art museum?”
Ethan replies in a monotone robotic voice, “No dad, I
want to go home.”
“How about we take the girls to the art museum? Wouldn’t
that be fun taking the girls? We’ll hold hands, and just walk around. Okay?”
“Uuuuuuuuughhhh!”
“Come on, you’ll be fine. We’ll just walk around.”
He grabs my hand, instinctively interlocking my index
finger with his pinkie, as we start across the parking lot. As we walk, Emma
chatters to Morgan excitedly, as my wife tells them a story about the last time
she came to this museum.
Nearing the entrance, a security guard pushes the door
open for us and we step inside. The lobby is vast, nearly three stories in
height. There is a quietness inside. Noise can still be heard, but everything—every
exhibit, every breath, everything—seems to whisper.
Lining the hallway leading to the museum’s various galleries
are ten thousand black butterflies. As we get closer, I see the butterflies are
hand cut from black rice paper. Walking deeper into the hallway I feel Ethan’s
hand tensing ever so slightly. Suddenly, I remember he hates flies—actually
anything that resembles a fly—maybe even butterflies.
We quickly exit the corridor and turn into the brightly
lit Steele Gallery; here each wall forms the frame for the artwork, while the
snow bright light drives off any shadows that seek to interfere. Approaching a small
glass case, Ethan pulls free of my grip and dashes forward intent on grabbing the
delicate wire sculpture inside. I catch him just before he reaches the display,
“Please, there is no touching.”
“Dad, I’m going to kill you,” he nearly shouts.
Autism ravages him, like a squall. With little
provocation, its winds drive his emotions to excess. His innocent mind, unable
to ebb the powerful surge, begins regurgitating myriads of movie lines and
random quotes like a makeshift spillway. These excerpts are most always
inappropriate, but rarely out of context—telling me he wants to kill me is just
one of a thousand.
“Really? Come on, take a deep breath.”
Ethan pulls away from me, and announces that he will
walk with his sisters. He takes Morgan’s hand while Emma steps around him to cover
the flank—like ancient mariners, they know the routine for stormy weather. They
walk deeper into the gallery, and deeper, we soon find, into rougher seas.
Out of nowhere Ethan grunts, “Dad, shut up, Or I’ll kill
you. Why did you do this to me? Uuuuuuuuughhhh!”
Routinely, I am the target for his abuse during these
episodes. As calmly as I can, I bring him closer and ask him to “Stop. Take a
deep breath.” I hug him, thinking that maybe a bit of deep pressure therapy will
take the edge off his sensory overload. Under the weight of my arms I feel his
body tightening even more.
“Maybe this is a good time,” my wife suggests, “to try
the new medicine. The doctor said it was perfect for times like this when he
gets overwhelmed. It should lessen a meltdown.”
We turn to exit the gallery hoping to find a drinking
fountain. My wife fumbles to open the medicine as I clutch Ethan’s arm and
wrist. He is dead set against going with me, and rather than fight him there, I
try to lead him into the corridor. We reach the drinking fountain just as my
wife gets the medicine open. It’s not going to work, I say to myself; we’re in
too deep.
I hate being right. What was nearly shouted earlier now echoes
loudly through the passageways: “Dad, I’m going to kill you!” It is followed by
a regurgitated, “Son of a #@%!” Like a flash flood, his emotions pour out, hell
bent on escaping rather than any actual destruction. “Stop it,” I say as he bites
into his hand. He releases his hand only to begin shaking both hands violently
in front of his face. This self-stimulation is his only avenue, other than time
and deep pressure, for his body to burn off his pent-up emotions.
Taking his arm again, we turn and as quickly as
possible—without making any more of a scene—head toward the exit, while the
girls follow behind. Making our way to the outside, I try to reassure him that
we are leaving, and that everything will be fine in just a minute. I’m lying—mostly
to myself. This won’t be over in a minute; it certainly won’t be over just because
we reached the exit. If I’m lucky, and we don’t end up on the ground in a
deep-pressure-wrestling-match, this will blow over in an hour.
Halfway across the patron-filled lobby he tries to pull
away and run. My grip tightens and I pull him closer to me. Under the weight of
the patrons’ stares, he seems heavier. In the back of my mind I wonder why they
stare: are they waiting for the spectacle to end or to explode?
We make it just outside the glass entrance before he
explodes with an F-Bomb. My wife gasps! Over his yelling, I can hear the air
rush by as every head snaps around to see the commotion. My legs buckle
slightly under his cutting remarks—our five-minute fifty-yard exploration of
the art museum has come to an abrupt end.
As we head to the cars he flip-flops between threats to
kill me, profanities, and weeping apologies. My wife offers to take Ethan home
so I can stay and see the museum with Morgan and Emma: “It isn’t fair to them
that his meltdowns control what they get to do.”
“You’re right,” I reply with my perennial
what-can-we-do-about-it look of apology, “but we’ll get over it. It’s not fair
to him either.”
As we reach the cars, Ethan turns and tries to scratch
me. His voice swells, cracking slightly at the end: “Dad, you did this to me. Take
me home. Now!”
I unlock the car and he jumps in the front seat. He turns
back to look at me and scrunches his nose and purses his lips in his version of
an angry face. Suddenly his hand shoots up and he gives me the finger, and then
shuts the door.
I walk around to my door as my wife and the girls get in
the other car. I sit down, start the car, and shift it into gear. As we drive
away Ethan takes my hand, interlocking my index finger with his pinkie. Gently
he squeezes my hand. One, two, three—it's our family code for I love you. I
reply with four squeezes of my own—I love you first. As we exit the parking lot he leans his head
onto my shoulder and says, “Dad, you forgot my kiss.”
I turn and gently kissed the top of his head. “How’s
that?”
“Perfect!...”
Without missing so much as a comma, my mind returns to
the page before me:
“…And once the
storm is over you won't remember how you made it through, how you managed to
survive. You won't even be sure, in fact, whether the storm is really over. But
one thing is certain. When you come out of the storm you won't be the same
person who walked in. That's what this storm's all about.”
I dog-ear the page, and set it down. I go into Ethan’s
bedroom, where he is still fast asleep amid his tangled blankets, Ziploc bag of
Legos, stuffed animals, and a roll of duct tape—his favorite toy. His five-foot
nine-inch body appears so gentle. This is only an illusion. His clenched hands
reveal the ceaseless storm living inside, even as he sleeps. I kiss the top of
his head—make a mental note that I need to shave him this week—and whisper, “I
love you.”
Turning to walk away, I smile inwardly at the forecast
and wonder what refining the storms will bring today.
Hi, Jeff. As a mother of a 31 year old woman with autism, I can totally relate. You WILL weather the storms but it won't be easy. When my daughter was small, you can't imagine the criticism I received from passers by....They had never heard of or seen a meltdown of an child with autism. I love it that you are out and about and never stop challenging him with public outings. My daugher had fear of flying things....like birds. We lived in Chicago, home of many pigeons....You can picture it! Hang onto you wife and daughters and envelope this child with as much love, consistency and hope....as I know you are. You are in my prayers. Things do get better as our kids get older! Much love - another mother
ReplyDeleteGriping, heartfelt. Put a lump in my throat...Thanks Brother Jeff.
ReplyDeleteThanks for teaching us through your family's experience.
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