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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Dots and Dashes

Shirts must be pink, or occasionally “pool”…

She speaks in code, Bink does, and I endeavor to decipher. She works rather hard, in her neuro-atypical way, at making sense of the world. As her mother and Chief Advocate and Interpreter, it is my dharma to help the world make sense of her.

We walk parallel to the others, next to but ever separate from the niceties of everyday etiquette, the social customs of this place and time. Try as we might, ( and we do try, usually) the distance between us and the others, the “typicals”, seems a little wider by the quarter moon, the fortnight.

We sandblast as we go, hew a serviceable path and call it road. In retrospect she will have surely perseverated on a multitude of things, in any given month of any year. It’s an intrinsic part of her skill set, and she does it well. For example: Why did __________ have a dangerous voice when she said no three times in a row on the Raquel chips Tuesday in the silly-silly-when column? That was in the year 2000, by the way. I know this, and roughly what was happening at that moment, because I have heard this exact question at least one hundred and fifty times over the years, and I have answered it each time in perhaps ten different ways. “ I don’t know” is not an acceptable answer, so I ask a few questions of my own, gather clues, piece things together. Sometimes the answer satisfies, sometimes it is clearly wrong. She is occasionally able to articulate a new detail, so I learn a little more each year. This is just one example of the hundreds of repetitive questions that populate my life with Bink. It’s fascinating, really, and it cultivates a wild patience.

There are always dots and dashes, codes and patterns that order my days. Take, for fair example, the laundry.

Splatterings of oils; could be olive or walnut, canola or ghee. These make wide patterns like the cosmos on a velvet sky. There are drops like stars; some large and hard to miss, some so tiny
they are barely visible to the eye. These can be found flung asymmetrically across the shirts, rubbed wildly into the thighs of pants, mysteriously pressed into the seat. An anarchy of art, or stain.

There are the squiggles, little wavy lines calling up my inner detective. Brown: could be coconut aminos, our alternative to sauces such as soy or hoisin. Or could it be chocolate? This calls for a review of her last few days, and then I remember that Thursday afternoon sweet éclair. There are also grand sweeps of things; green curry, crimson siracha, curled across the cotton like big cursive letters spelling out a gleeful early dinner.  Blobs, like asteroids crusted and clustered, could be smashed chevre, wild rice, couscous laced with parmesan, and pecorino.

The laundry basket bubbles up with all these garments, abstract perpetual records of her days. I pull each one out, smooth it, inspect for the artists’ signature, assess which treatment plan
will erase, release, allow for swift return to a home drawer.

Bink has an odd relationship with clothes. They must be stretchy, soft, mostly free of snaps and zippers and buttons — nothing to bind, scratch or pinch. Shirts must be pink, with the rare exception of “pool”, which is a particular shade of blue.

When she is upset, her pants are fertile ground from which her fingers will seed holes, which sprout and flourish. Once she burst in after school with half her bottoms flapping in the breeze like a maxi-skirt, the entire outside of one pants leg torn open.

So, the laundry. It’s not that she cares about stains, or how she appears to any of you. I am the one who notices the ways of the world, who sees how she is daily judged. In line at the market her hands flap, bird-like, and she sings a whole CD, in order, from memory. She has a voice like an angel, and some have ears to hear this, her sparkling soul. Others see the Morse code on her clothes, dots and dashes, a little tear with hole-y aspirations. So I , the one who knows her best, every freckle and scar, dot and dash of her, will keep erasing the distractions of yesterday’s menu on her shirt. And I will hope, and sometimes pray, that this will give more people the ears to hear her song.

 

-Melinda Coppola

 

 

 

 

 

 

7 AM ( more autism awareness) | Autism

7am

I entered your room quietly,
with loving stealth,
stood inches from where you slept
curled into the warmth of your sleep nest,
pausing one round moment
to take in the sight of you, just
to hug you with my eyes
before we began
the ritual we’d perfected over
twenty four years of mornings.

There we were
in our assigned places,
me leaning gently above,
you just beginning to stir
as I sang you awake.
There were your hands
reaching for my hair,
first right side then left,
like always, like a touchstone
to remind you it’s safe
to be awake and alive.

Pink walls and ceiling, pastel rug,
whispered, made-up song,
you under soft
layers of things;
assorted spreads, a quilt, some blankets,
one embroidered with your name
and the date you debuted,
a gift at birth from a relative
on your now absent
dad’s side that met you
once maybe, whose name
I’ve quite forgotten,
who is surely long dead.

I flash-mused on what she’d feel,
this nameless giver of named blankets,
if she could ghost unseen
into your bedroom, this morning
to see what you’ve become.

Would it be grief
for all the ways you’ll never be,
the way you arrived
with unseen challenges,
diagnoses not yet named,
a baby who would remain,
in many ways, a child?

Would it be curiosity,
your differences intriguing,
offering perspectives
she’d never considered
while alive,
tapping on the doors
of her phantom compassion,
awakening a deep patience,
a human reunion with her own
estranged otherness,
the selves she, while living, shunned?

I hope she would be filled
with the color of pure delight
as she saw you still loving
her decades old gift,
for its essential pinkness,
its enduring softness,
its well-named comfort
in the place you call safe,
in the place you dream,
in the place you are perfect
with no one there
to tell you otherwise,
in the place you dream.

-Melinda Coppola

Of Names and Noses

Spirit Essence Portrait of Bink, done in watercolor by artist Melissa Harris

Of Names and Noses

I gave my daughter a blog name first and foremost to respect her privacy. Oh, I’ve told her that I write about her sometimes, because she is so awesome and amazing and interesting and people need to hear about things like that. I’ve asked her permission as well, and she has, in her way, given it. Her understanding of the implications of having her name “out there” along with some of the stories of our life…well, it’s limited. So I prefer to provide an extra little cushion between her life and my tellings about it, and thus the pseudonym.

Why Bink?

Some years ago on a pretty blue and green star in a galaxy near you, a child was born. No ordinary child, this! She came with the requisite parts, but her mind was put together ever so differently, woven in complicated abstract designs. There was no instruction manual.

This child was given a beautiful name, and she was loved very, very much. As she grew, it was pretty clear she was not a mainstream sort of child, and the collection of anxieties and oddities, interests and delays and symptoms she embodied came to be called autism. She grew some more, and some words came, but she was not able to tell the world what she felt and what she needed, at least not in the regular way.

Her anxieties were growing, too, and they were super-sized and showed up in myriad ways. One of those ways had a lot to do with touching people. Not your standard hug or shake-a- hand kind of touch, but rather little fingers ( hers) darting out to bop a baby on the head, or touch a nearby nose. That kind of touch became something like compulsion, and that need got bigger and stronger when she was anxious, and that in turn made her more anxious. So there was the urge to touch, and then the anxiety about the urge to touch, and that made the urge even bigger, and round and round it went. She passed through the bopping babies on the head phase, but the urge to touch noses never did fade.

The child’s Chief Interpreter and bodyguard ( that would be me) was always looking for ways to make lemonade of the bumper crop of lemons that grew up in and around the autism, and the anxiety, compulsions and fears. Somewhere along the way, the child and the Chief Interpreter began to assign sounds to certain touches. It was a collaborative effort, and one day the fingers touching noses elicited a “Bink!” from the child, and CI laughed and smiled and this became a good thing, a fun thing. It was also a teaching tool about whom to touch, and where, and when, and so the child began to touch noses of family members and caregivers with a definitive “Bink!”, and that was OK or even good.

The next learning was about permission, a challenging concept for a person who had little sense of others having their own preferences and feelings and thoughts. The child learned that strangers and other non-caregiving types did not make that bink sound, and in fact made scowly faces and sometimes got upset and had what she came to call a ‘dangerous” voice. She also learned when and where the binks were not OK. In the car, for example, not OK to touch the driver’s nose unless stopped at a red light. Super Guy, my husband and Bink’s stepdad, and I had the whos, whats, and whens covered.

And so, the unified gesture and sound that is a bink moved right into the child’s life and became a permanent part of the lexicon. Sometimes the touching noses came when the child was anxious. This happened especially when she was in school and with people whose nose did not make a bink sound. When she was with her Chief Interpreter, though, and other assorted family members and understanding types, the child began to seek out binks for reassurance.

There even evolved a nose-to-nose bink, whereby she would touch the tip of her nose to another understanding sort of person, and a bink would come. This happened most especially with her CI, yours truly, though she sometimes would approach a select few with a request, “ Nose to nose?” Her CI hastened to assure the chosen few that this was indeed an honor, and they’d best partake.

Next came a variation where her nose would meet CI’s cheek or vice versa, and thus a cheek bink was born. This bink is and was reserved for CI alone. There is also a specific sound that precedes a cheek bink. It sounds like an awwww one might coo at a baby human or sweet little animal that embodies cuteness.

When Super Guy and Chief Interpreter had a talk about a blog name for this child ( who is now 24), no one or two words instantly arose in their minds. As they considered, over days, this young woman’s utterly unique ways of being, her quirks and her rituals, the bink thing began to rise from the mist. It just seemed so right, especially because it has evolved into a happy, loving thing.

So there, in a nutshell, is the background of the bink. It’s grown more nuanced over time; it now sometimes paired with a need to touch CI’s hair. For the record, the hair should be symmetrical, an equal amount of the left and the right. This is known as “two sides.” and in fact the day cannot begin without this sweet ritual. But that, my friend, is a story for another time.

–Melinda Coppola

 

Cat Calls

 

for Super Guy

4 am, the favored time for felines in this house;
to dance a catty jig across my soft belly,
scale the cliff your side-sleeping body makes
as it juts, dark and warm, one shoulder
reaching towards the ceiling which,
if I squint my sleep-eyes just so, looks
quite like a February sky.

She slides—the cat who loves you most,
the one-eared gray
with a face like Mona Lisa—she slides
gracelessly into the valley where your neck
and shoulder meet, landing
with a small thump, and you half sigh,
breath paused as if considering,
in your dream state, the wisdom of rousing
to shoo away the one
who has attached herself to your heart,
whose paws and claws have daily
and nightly worn a path
through your resistance,
laying claim to the continent of your body,
staking out the exact place
where she anchors her nose to your neck.

This is the muted drama of our lives,
a home whose floors and walls have been
downright humbled by five
felicitous four-leggeds,
a house that swirls with fur,
No matter how hard I try,
I say to guests, but truly
I have given myself up to it—the wee hour wails
and squeaks and the sure way the littlest one
dashes under the bed at the slightest
nearing footstep, and the uninvited
company in the bathroom,
where sets of big eyes
green, golden, brown,
watch my ablutions
with what feels like bemused
tolerance with –perhaps – a side of love,
thought it might be anticipation too,
‘cuz it’s always
almost dinner.

 

–Melinda Coppola

 

In the old country

Albert Tromara,
my father
1926-2001

 

 

“In the old country….”, he began
and she thought,
he’s confused again, he wasn’t there…
and she remembered all
the stories he told of growing up in Roxbury,
only son of Albanian immigrants who worked hard
in the bakery, and he as a boy
worked alongside them.

On a rare afternoon off,
he’d join the others, first generation kids
from assorted old countries,
and they’d make do,
roll balls of twine
to play softball in the Boston streets.

“We worked hard, but life was simpler”…..
and she thought about how the contrasts were starker,
juxtapositions hard-angled and that now
the greatest discipline was to keep
from having too much, too many things,
to have just enough
in this land of cheap goods,
such irresistable colors
and ads all imploring
buy me! I alone shall
make your life complete!

And then her heart began to ache
and she was missing him, missing him,
and then she looked up
realized she was talking to her husband’s father,
not her own at all
for he was dead fifteen years now
and this one, this sweet
old man speaking in a thick accent
did hail from the old country,
or one of them, and
she took a deep breath,
fixed her eyes upon him
and began to listen.

 

Melinda Coppola