Welcome to Autismville

 

Shimmering minnow leaves

AUTISMVILLE

I can’t tell you
it is an unpleasant thing
to live in the quirky neighborhood,
on the far side of the river,
a good ways from the thickest part
of the frantic throng.

Here, we are daily looking up,
fixating and stimming
on green minnow leaves
that shimmer against the waters of the sky.

Here we have our own customs;
the daily waking song,
the recitation of dreams,
the morning questions and videotaped answer
for her to play back over and over,
the reassurances:
Yes, there will be snack. Yes, Mom is a girl.
Yes, there will be girl hair when we leave.

The life we’ve grown into,
first she and I and then he
who married into this confluence
of ordered disorder,
this life has authentic charm.

We go slow, we don’t try to measure up.
Our victories are sweeter
for how long they take to manifest
and mysterious
for how quickly they can disappear.

I can’t say it’s tragic in this virtual village,
this parallel universe
peopled with other singular folk
who understand the need for things
like space and processing time,
patience and velvet compassion,
smooth voices, soft dolls,
sweet routine and
more spice in everything.

We have magic here, I tell you.
Songs that play in color,
voices with texture,
folks who spin and swing and
hum and sing.

And the leaves! The glorious
minnow leaves,
dancing upstream,
between the clouds,
and laughing.

Melinda Coppola

 

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Self Portrait

” We do not see things as they are. We see things as we are.” Anais Nin

AS SOUP: I am mostly hearty kitchen-sink vegetable bean. With each tasting I re-season myself; more salt, a dash of lemon juice or vinegar, a pinch of cumin, a snip of fresh mint. On occasion, I am decadence in a bowl; my inner creamy broccoli-cheddar self will show her sly smile, or my smooth and caloric parmesan-green bean let-it-all-hang-out side may bubble up to comfort and delight herself, and you if she’s in the mood.

AS STUFFED ANIMAL: I am a little ivory lamb, tucked away in a bedside drawer to avoid the cats and their greedy, nosy mouths and claws. I always know I’m in there, though, and that alone brings deep and wide delight.

AS BOOK: I am the quirky young heroine of a magical fantasy series set in a vast woodland. The plant spirits whisper and chide in a most amusing way. I slide from one adventure into another. My dear friends, the birds and the squirrels, the deer and the dark-eyed owls, are always nearby. They guide me, and sometimes I rescue them, mother them, sister them. My hair is wild as the tangled roots of the old oaks, my clothing, hand-me-downs from the brownies and fairies and fashionable mushroom elves. I sleep among the mosses and swim in the cheerful brook.

AS WEATHER: I am mercurial New England, Geminian, not content to stay the same too long. I am generous when sunny, and sullen when I rain. I pay no mind to the silly preferences of those that dwell within my borders. Why, if someone doesn’t like one of my mutable seasons, they can wait it out, or curl up in a ball and roll south to the more predictable climes.

AS POEM: I am free verse, unconventional and untethered to form. Black ink on ivory stock, predictable fonts and rectangular pages, these things bore and stifle my words and music, so I refuse to be bound by them. I am not afraid to rhyme/when the Muse tells me it’s time./ though I’ve been known to piss her off/by refusing.

I am mostly undiscovered, a written contradiction; quicksilver, slow on the uptake, a little tentative, rock n’ roll, then shy. I doubt I’ll ever be famous, but if I am an invitation to one soul to see one thing differently, then nothing is for naught.

AS HOUSE: I am old in the bones, wide-porched with the kind of lopsided charm that challenges: restore me, update me, uncover my shiplap, make me a color I’ve never been before but retain every odd angle and don’t f— with my leaded glass. I am not your flip, but oh! how I will serve and protect a family. I’ll open my doors each morning to gently push them out to work, to school, to a day of playing in the meadow. Each evening I’ll warm and welcome with my fieldstone hearth, and guard against nightmares and the cold. I’ll proudly display the children’s heights and dates penciled on the old doorframe in the pantry, and pose patiently for pictures through the lovely, languid years.

-Melinda Coppola

SORRY

A woman and her young daughter
walked by me, heading opposite,

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Art by Bink. Looks like a girl flying to me!

on the narrow sidewalk
outside the Y this morning.

I’m sorry, Older She said
in passing
as women often do,
and though my mouth was silent
I wanted with all my heart to say

Please don’t apologize for taking up space.
If you want to regret anything,
be sorry for shrinking away,
making yourself small.
Anytime. Ever. You most of all,

a mother
to a daughter, will you please
lengthen, and widen. Stand up

and show your big glorious self

Spread your arms wide so
your daughter will see

how to fly.

My mouth stayed shut, though,
conscious as it was
about taking up room on my face.
and I thought, for the hundredth time,
the thousandth;
Those daily speaking engagements
Internally – thought,
Externally, conversation, —
are we not
often, or always,
speaking mostly, actually,
to ourselves?

– Melinda Coppola

 

Write her

IMG_7260

Bink at the beach, watercolor by Melinda

THE WHY NOT THEN

When my daughter (alias Bink) was younger, sometimes friends or family would say,” Why don’t you write about her?” I was dismissive, back then. So many other people had done that—written articles, poems, a book about their child with autism– and done it well. I just didn’t think I’d have anything new to add. And – more truth to tell – I doubted my ability to do her, and my life with her, justice with my words. And then there was the SLEEP thing. (More about that later.)

Recently, the mental and emotional fog that seems to go with raising a child who has BIG needs, has begun to lift. In the semi-clarity I now sometimes enjoy, it has dawned on me that nobody else has a Bink. I am the one who is most privy to her Binkness, and the world just shouldn’t be deprived of the richness of knowing more of her.

So I have written some poems about life with Bink, and an article or two. There will be blog posts, and, Spirit willing, a book someday. I figure I owe it to the world to make her known, autisms and all.

ABOUT THAT SLEEP THING:

In those early years, ( say, the first twelve or thirteen in Bink’s life) I was weary. That’s putting it politely. Fact is, I was often just barely making it through the days. Generally Bink would go to bed at 8pm, which she called “Owl” and fall asleep within an hour. Often, though, she would wake at midnight, or 1 or 2 am, and be up and wired for the rest of the night and the whole next day. I was flying solo by the time she was six, and it would be years before Superguy landed in our lives. I was exhausted so much of the time. I remember being so fatigued, driving Bink to her educational program and her various therapies and doctor’s appointments, that I’d  open the windows wide to get blasts of fresh air in my lungs and slap my cheeks, bite my tongue and lips to keep myself from falling asleep. I was also diagnosed with mono somewhere in all that haze, but I soldiered on because, well, I had to. Asking for help was never my strong suit. There were many daily rituals to go through with Bink, so that she would eat, and void, and be clean enough and have her clothes on correctly.  The level of energy required to care for her well and keep up with all the paperwork that went with all the appointments, doctors, therapists, school…it took a big chunk of my mental and emotional capacities to keep all that in line. Many days felt like a marathon. I am not writing this to complain per se, rather to explain that I was in no place to write about any of it, during those years.

THE WHY NOW

That was then. The waking in the wee hours, agitated and buzzing with anxiety, gradually faded away. Medications have helped. Along the way she also learned to tolerate being alone in her room for periods of time, or in the living room in front of a video, when she couldn’t sleep. She still gets up in the night, somewhere between two and six times per, but she usually just visits the bathroom and then goes back to her bed. And so, I am relatively rested. And in the ten or fifteen years that have elapsed, even more other people have written poems, articles and books about their child with autism, and done it really well. Still, I am the only one uniquely qualified to tell you about this parallel universe, life with Bink. I think it’s time.

More to come….

 

Melinda Coppola

 

Not Writing

Doing anything to avoid writing is the hardest work, working these twin dwellings; body and house. Each provides chores; endless spin cycles of exercise, rest, toil, despair. I even find myself talking to my father, asking him aloud what it was like to die, and does he watch me not writing, think me lazy as weeds grow in the cracks of the driveway, or has he seen my now-husband and does he think well of him?

It’s not the finding truth but distilling it that’s hardest. Deep and precious observations are thrust into pockets for later. They almost know, as I do, that the laundry will eat them whole. Fingers of poems drop blithely into the mirepoix, the pre-soup du jour, where they only nourish more not-writing, as if the not was a fully formed person who looks just like me. Gemini twin, the not-writer, not-artist, not teaching not singing not tending the gardens of herbs and chapters and dreams. The multi-hued shapes and voices and shadows of brilliance that long to be streaming live….those are sprinkled with baking soda and water and buffed clean away.

I am lightly amused to watch my feet running my body away from the collage not created by the non-writing not-artist. Unrequited love; the fingers and the keys, pen and paper, images and ghosts of Muses past, present, future, clamor for equal time.  Some jealous few demand complete attention to their gestation, commitment to their nurture. I abort them blithely. Swirling late spring fills my pockets and I empty them, turn quietly towards home.

-Melinda Coppola