Poetry, Autism, and Statistics, Oh My!

Hello!

I’m happy to share that  my poem, Autismville, won the Songs of Eretz Readers Choice Award Contest, and another of my poems, 7 AM, came in second!  If you’d like to see the official announcement, you can click HERE   If you voted in the contest, thank you, thank you!

This is an international contest, so it can’t be just my little ol’ cheering section of friends and family that helped this particular poem to win. Maybe the results reflect a growing interest in learning about autism, but I think it’s as likely that it mirrors the increasing numbers of people receiving the diagnosis.  More and more people know someone who is on the autism spectrum, and perhaps that means that lots of folks can relate to my poem. The latest National Health Center for Health Statistics data puts the autism stats at 1 in 36. Yep, that means that, of every 36 children alive today, there is one who fits somewhere on the autism spectrum. There are many arguments, many opinions about the true prevalence of autism in the US and worldwide, but there is no doubt that the numbers have risen dramatically in the last few decades. Bink was diagnosed in 1994, and my early, frantic research at that time placed autism at 1 in 10,000 people. I think the stats were actually more like 5 or 6 in 10,000 then, but my first information resources were library books and her first pediatrician, and neither of those sources was quite up to date.

Sometimes, people ask me why I think the prevalence rate has increased. My answer has been the same for the last decade or so: I believe it’s a combination of factors. This thing called autism is an umbrella term for  a collection of symptoms, and I believe there are multiple influencers. More children are being diagnosed, and at earlier ages, but that only accounts for a part of the increased numbers. I count vaccination schedules, genetics, environmental toxins, in utero exposure to certain maternal illnesses, medications administered to moms during pregnancy and/or birth, and lots more in varied combinations. Too, because I am a spiritual person and I believe we are all here to learn certain essential individual lessons and to share our unique gifts, I sense there is an element of fate involved. Note: in some corners, them’s fightin’ words!  I am not here to argue with your opinions or defend my beliefs, so if that’s your impulse, take it elsewhere, please and thank you.

Look, it is critical that research is funded and continues. I really, really hope science can at least find a way to ease or eliminate the most difficult manifestations of autism, like self-injurious behaviors, seizure disorders, inability to communicate, and utter lack of safety skills and self-protective impulses. But my beautiful daughter is here now, and that’s where the bulk of my attention and energy flow. As her mother, there is much I can do to make her life easier and better. As a writer, there is a little bit I can do about raising awareness and perhaps helping people understand the magnitude of the challenges Bink and so many others face. As founder and teacher of Yogabilities™, I can help people with autism and other disabilities in my community feel a little stronger, more balanced, and more flexible, and I can help them learn some basic and portable stress reduction techniques.

You’ve probably heard a few different quotes from some really interesting people like Voltaire, Confucius, and Shakespeare, suggesting that we not let perfect get in the way of progress.  Our allotted time is short , and doing nothing will change nothing. When Bink is struggling with something, we go over (and over, and over) her strategies. I’m trying to teach her that there is always something she can do to help herself.  Expanding on that, there is always something each of us can do to help others, including people with autism and their families. What seems like a little can feel like a lot.

It begins with acceptance, and a desire to understand a very different way of being. When people are curious about Bink, I don’t interpret it as rudeness. I’m glad to answer questions, or suggest ways they can engage with her.  It continues with respect for all people, including those that don’t talk, and those that flap their hands, and those that spin, and those that don’t make eye contact. That means the Neurologist in that top rated hospital could’ve handed me his written assessment, rather than reading aloud his list of her supposed deficits and offering a bleak prognosis, while she stood at my side, taking it in. That means the waitress in the restaurant could ask Bink what she wants to order instead of asking me what she’ll be having, as if she isn’t there. If Bink can’t answer, I’ll step in, but please, waitress, treat her like the adult she is.  That means the dad in the CVS could reassure his little girl that she can tell Bink her name when she asks, rather than averting his eyes and turning away, which teaches his daughter to do the same in the future.

When in doubt, assume competence, do unto others, and be kind. Little things, big impact.

Stepping off the soapbox now, and signing off.

-Melinda Coppola

 

 

 

 

 

 

 

 

 

 

 

NAMED

Someone asked me

 

What is your name?
To name is to make known,
to specify, enliven, color in,
to make dimensional.

My surname: Verdant. Given name, Green and Round.
Given by me, to me. Green Round Verdant.
Or is that what I long to be?

My name is often She. She plus Who.
She Who Sings, She Who Creates, She Who Loves.

Define me, please, by what I love,
If you must define at all.

Being Gemini feels like
a delicious excuse to be myriad things,
many Shes, and so I introduce
She Who Flowers
She Who Avoids
She Who Storms.
She Who? She Who Knows
She Who Knows Much
She Who Knows Much about Little.

My name is Skin, warm and well-used,
mapped with roads of veins. Rivers of stretch
mark the spots where I expanded
to include more than I ever
thought I could, maybe
more than I should, so perhaps,
this She is named Adaptable.

Almost Crone.
That, too, is mine to claim.
She Who Softens into Aging, She
Who Welcomes the Amorphous Opening Nature of It.

That last one should be illegal, far too long.

Hungry. My name is Hungry for What?
Am I Too Hungry? My name is
Tell Me The Shapes of Your Hungers.

Yesterday my name was Tight.
Not Good Enough.
Not Enough. Never Enough.
My name was I Have Nothing Worth Saying.
May I Please. How May I Please?
May I Please, Please.

Towards tomorrow my name is Santosha,
short for
May I Be Content.
May I Be.
Content.

 

–Melinda Coppola

The Beach Stones

The writing prompt was clear and simple: “Today, write about an object that magically transports you to a different mood, a different state of mind, or a different time, filling your life with instant wonder, curiosity, or delight.”  My response was unequivocal:

 

When I am freed to walk a stony beach, my heart transforms herself into a fluttering bird. Her wings beat out a simple song against my rib cage, the bony bars of which expand with the gift of incoming ocean air. Tap tap tap, and then she is gone—soaring, a silent gull alone, surveying the riches of smooth, rounded stones that adorn the sand below her.

Further, I am always privileged to be among them, those smooth old stones that have been tossed and rolled and juggled by the ocean and the years. Spending time with these life forms—for they are very much alive— is a form of grace, a vitalizing and soul saving interlude in the midst of the everything else-ness of continuance in this body, in these times.

There is nothing that brings me such pure, unadulterated delight as a chunk of time with the stones, which rest against the sand like diamonds sit in their jewel box , upon velvet.

–Melinda Coppola

 

 

 

Many Singularities

 

 

 

 

 

 

Stephen Hawking,
having passed away
a full fifty one years
post predicted demise,

has left us trails,
breadcrumbs.
Not random,
because nothing is
haphazard as it seems.

Rather they are beaded,
strung together
on some
holographic ribbon
run through holes
patterned in multiverses
of black velvet,

and I’m already poeming
a proposal
that each patient,
upon a presumed life
shortening diagnosis,

be presented with
Stephen’s curriculum vitae
and
for good measure,
a collection of verse­­,
(the non-rhyming kind),

to further impeach
the arrogance
that moves mere mortals
to issue proclamations
of allotted time,

as if anyone could ensconce
one star from its constellation,
give it nothing to reflect
back or upon,
and foretell its singular light
in years.

Stephen, leaving breadcrumbs,
round clues to square
the life he left behind—
two wives, three children,
a dozen maps with two sided arrows
pointing to where
we came from, where
we might go,
a dummies guide to
how to flourish
despite, or with, or even because of,

also left a hundred doors
open to the curious among us,
which should mean everyone,

and he gave language
to the way an atheist sparks
a deeper appreciation of God.

It’s all in how you label it;
accident, plan,
gift, curse

it’s all up for grabs in a universe
where everything is sacred
or nothing is.

Melinda Coppola

What is the definition of a poet? I think we are interpreters of everyday sights and sounds and interactions, enabling more people to experience the sheer miracles that surround us and live within us. Stephen Hawking grasped things most could never comprehend, yet his named theories and observations captivated millions. He was a brilliant physicist, yet also a poet in his own way.

 

Deliverance

Remembering my father

1.

The night your own
difficult breath awakened you, your lungs
spent from trying, and you sensed your heart,
that grieving well, slowing almost imperceptibly,
and your legs and arms refused command or
even suggestion to rise or sway
or go into the spasms you’d become
accustomed to, and your eyes opened only
slightly and your vision went grainy                                                                                                                                                                         like the silent films you remembered in some
distant part
of your collection of impressions, and the pain,
your pain which had become such a familiar presence,
first a nemesis that kept you riveted on the joints,
the muscle fibers, the mechanics of inhalation and
bladder control, then a graduate course that taught you
the location of your liver, your spleen, taught you the
intimate ways of the dying body, the ways of dying
with cancers; one, two, three kinds of cancers and kept
you faithful to your medicines;
two every four hours of the blue
one pink in the morning, the small white which accompanied every meal
when you could eat, the large ones, difficult to
swallow, that you could never remember
the why for…

2.

Did the pain lift and the light blur as you finally
let go the idea you’d ever, in that sad old body, heal?
As the resistance dropped, did you see them all at once,
the welcoming angelic beings as they opened
their ethereal arms to claim you? Did they come
together, in a circle, or did they grace you one
by one, enfolding your brittle bones as they reached
inside to help you glide out? Did you,
I ask, feel that peace as golden light flood
your dimmed perceptions, did you
groan before you let that last, stale breath escape
your windpipe, did it feel, as you left
like sweetest relief from a too-tight shoe?

3.

On your deathday, as we grieved, did you scan
the paths your travels had worn, did you revisit some
moments longer than others, did you regret?
Did you send comfort in each
sympathetic call, touch, hug, did you
make sure the children still laughed and
did you lift us up and sweep
away any traces of old
anger, unfinished business, that we might
remember you pure and silver, the flash of humor
in your Albanian eyes, the sage advice, the
bad jokes you carried in your well-worn pockets?

4.

We are all assigned an entrance and an exit,
or maybe we choose the exact moment and
the circumstances of our stay.
I waited out long nights and in between
the ordinary moments of days full
of toil and pleasure, greeted you at long
last in my own quiet heart finally echoing
all the questions, the answers glowing
in the dark, having been there all along,
like stars.

-Melinda Coppola

The Poet Says….

Allow me to share a poem that debuted on the Songs of Eretz Poetry Review this morning. This is the third of my poems to be published there in the Last week. All three are eligible for the Readers Choice Award contest on the SongsofEretz.com    Voting begins March 1!

 

The Poet Says This is How You Should See

 

A prism is lifted to the sun. Imagine
a million nuances of color and shine,
fractal languages of symmetry
resting perfectly
between breaths or heartbeats.

The artist knows the power of spaces,
without which there would be no means
to shape the eye’s longing.

Musician has this same knowing,
gleaned through the eardrum’s
oscillations: there is no song
without pauses
between notes.

Someone in your diaspora of friends
will die tonight, and in the moments
between last exhale
and the doctor’s legal declaration,
a poem is written on the window
in frost. It lingers

only as long as two pairs of eyes can see it,
and if the heart that goes
with one pair can hear it,
a song will be born,
and if the soul that goes
with one pair can see it,
here will be a rendering
in charcoal, or paint, or crayon.

This is how life continues;
The poetry between things
must draw the attention
of some realized aspect of God,
like you, or you,
and your near-desperate desire
to interpret the miracle
becomes the language, the love, the soil
from which
something else can be born.

–Melinda Coppola

The Goddess of Every Little Thing by Melinda

Returning to Autismville

 

Good day!

Below, the second of three of my poems that are eligible for the Readers Choice Award over at Songs of Eretz. 

Here is the poem, along with the Editor’s words and poets notes from the journal:

Editor’s Note:  Nominees for the Songs of Eretz Readers Choice Award have been or will be published/reprinted in Songs of Eretz Poetry Review every weekday from February 19 to February 27.  Vote for your favorite in March by sending an email to Editor@SongsOfEretz.com.  The winner will be announced in April and receive a one hundred dollar honorarium.

Autismville

Melinda Coppola

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.

Poet’s Notes:  My young adult daughter lives with my husband and me.  She also lives with Autism, Obsessive Compulsive Disorder and a great deal of anxiety. She presents as quite challenged to the uninitiated eye, and our lives are far from typical.

I often feel that we live in a parallel universe, moving at an entirely different pace while the world speeds past.  The children of friends and family meet their expected milestones and move on, and we amble and pause, spin in circles, and forge our own footpaths through the weedy brush. Our milestones are different, but if and when they come, we celebrate them well and take nothing for granted.

It’s not an easy life but it’s also not the grand tragedy that some people seem to believe it is. I wrote this poem to offer a different perspective to those who feel sorry for us and those who move in the faster, more conventional lanes.

About the Poet:  Melinda Coppola has been writing in some form for nearly five decades.  Her work has been published in several magazines, books, and periodicals including I Come from the World, Harpur Palate, Kaleidoscope, The Autism Perspective, Spirit First, Chicken Soup for the Soul, Welcome Home, and Celebrations.  She is an artist, yoga teacher, and mother to an amazing daughter with special needs and enjoys infusing the work of her heart with her voice as a poet.

Coppola nourishes her creative spirit with singing, early morning walks, collecting and making art with beach stones, cooking, spending quiet time with her husband and daughter, and communing with her cats.  This poem was first published on her personal blog twenty four may on June 8 2017.

 

7 AM, Redux

Dear Reader,

I’m so pleased to share my first of three finalist poems from the Songs of Eretz poetry contest. Though I didn’t win first place this year, each finalist poem is eligible for the Reader’s Choice Award.

Steve Wittenburg Gordon, the Editor of Songs of Eretz, published the poem and the following commentary on the site today:

Readers Choice Award Contest Poem: “7 a.m.” by Melinda Coppola

Editor’s Note:  Nominees for the Songs of Eretz Readers Choice Award have been or will be published/reprinted in Songs of Eretz Poetry Review every weekday from February 19 to February 27.  Vote for your favorite in March by sending an email to Editor@SongsOfEretz.com.  The winner will be announced in April and receive a one hundred dollar honorarium.

7 a.m.

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
two decades 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 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.

 

Poet’s Notes:  My young adult daughter lives with Autism, Obsessive Compulsive Disorder and a great deal of anxiety. She is a stranger to the ways most of us learn to survive and thrive in a confusing world. Her vulnerability is a big concern for me, yet she is finding her own ways to cope and to calm the sensory storms any given day can present.

E’s pink room, and her bed layered with soft blankets that echo the colors of the walls is a place of refuge for her. The rituals that we’ve created give her structure and comfort.

In this poem I tried to capture the tenderness of a morning moment before I sang her awake, when my eyes went to the monogrammed blanket on her bed. I imagined the giver joining us in spirit in that pink room, seeing that baby blanket. What would she understand from this scene?

About the Poet:  Melinda Coppola has been writing in some form for nearly five decades.  Her work has been published in several magazines, books, and periodicals including I Come from the World, Harpur Palate, Kaleidoscope, The Autism Perspective, Spirit First, Chicken Soup for the Soul, Welcome Home, and Celebrations.  She is an artist, yoga teacher, and mother to an amazing daughter with special needs and enjoys infusing the work of her heart with her voice as a poet.

Coppola nourishes her creative spirit with singing, early morning walks, collecting and making art with beach stones, cooking, spending quiet time with her husband and daughter, and communing with her cats.  This poem was first published on her personal blog twenty four may on April 20, 2017.

It’s a Good Thing

The View from Here

Hello from my couch, where I’ve been planted for the majority of my waking hours for the past twenty five days. Who’s counting? I sure am. I’ve been following doctor’s orders post-surgery and elevating my right foot anytime I am sitting down. This is an improvement, since last week I was gifted with permission to stop elevating it while in bed. This can only be a good thing.

I left my most recent post-operative doctor visit with another gift, though I’m hesitant to label it as such. I said goodbye to the big awkward cast that had covered my right leg from just beneath my first two toes up to about an inch below the knee. In its place I am sporting ( Ha! Tongue so in cheek) a heavier and even more awkward black boot-like thing. It has noisy and strong Velcro strips that multitask beautifully, keeping the boot in place while playing catch-and-hold with large quantities of cat hair.

When I tell people I have a boot now, most assume I am doing what people do in boots: walking. Nope, I’m still diligently keeping any weight off that right foot, awaiting my next X-ray in fifteen days ( but hey, who’s counting!). I think that next picture will determine whether I’ve grown enough bone underneath the plate and screws to allow me to begin walking a bit in the boot with crutches. If things aren’t looking optimal, it could be two more weeks after that before the floor shall know the whole two-footed weight of me. When that time arrives, it will be a very, very good thing.

This has been such an interesting journey so far. I guessed there would be lots of rest, time to read and catch up on the House Hunters type shows I enjoy, and time to create art and poems and essays. I supposed it would be hard for my daughter who is so used to having me as her primary caregiver. Some of that has happened, but there have also been some interesting emotional day trips.

Chunks of memories have risen from the depths, some painful, others pleasant and enlightening, but all inviting me to re-examine the stories I’ve told myself about people and events from the past. As a Yogi and an introvert I’m no stranger to self-examination, but my hours of couch sitting invite a deeper dive. It seems my advancing years have allowed a kinder, broader perspective, and this, too, is a good thing.

Another side effect of this experience: I’m finding a deeper understanding of what it feels like to be dependent on others for basic self-care. I’m becoming acquainted with how isolating it can be to spend day after day indoors, at home, with no ability to get up and take myself somewhere.

I’m remembering all the friends and acquaintances and family who have had long recuperations from accidents and joint replacements and serious illnesses. And those who never did recuperate. I wonder about their experiences, and I see and feel the ways I could have been more loving, more present, more helpful. It’s not regret that fills me, but rather gratitude for the lessons and for the chance to do it differently in the future. This, then, is a good thing.

I’m not trying to bum you out, dear reader. This is not grim, not at all. I know I’m really lucky to be so temporarily disabled. I know I‘m among the privileged few world residents who have access to great medical care and procedures that can and will improve my quality of life. I’m not depressed, I’m not particularly bored, and I’m not spending much time at all feeling sorry for myself.

What’s clear to me: this forced period of limitation comes with gifts. The greatest of these may be a deepening compassion for others in similar and often worse circumstances. And this is a very good thing indeed.

-Melinda Coppola

From the First of November, 2017

Because sometimes it takes a whole month to write it down.

I type with hands that are redolent with garlic, onion, and freshly grated ginger. Today contains a chunk of time for cooking, with hearty stew for him, and Indian spinach rice, spicy, for her.

I walk and sit and rest and work with a heavy heart, weighted near equally with sadness over my cousin Philip’s sudden passing and with the aftermath of a terror attack in NYC. From both those stews, I pull the same saturated question: Is this the new normal, then? Will my peers, other cousins, friends, siblings, begin the dying times now? Is terror on the streets a new given in these not-so-united States?

This is not the self-portrait I want to create. This is the real and Wednesday me, though, as I slosh through to-dos with a heart that is stretched out from carrying big sacks of sad.

And yet, and yet. Perhaps my jiggly, overstretched atriums and ventricles have ever more room for loving, and accepting. Compassion for all beings, or as many as I can find my way towards/ forgiving and embracing and

that Voice, the one that doesn’t belong to me, the one I know I am a part of, soothes low and smooth with notes of

It will be OK. This, too, shall pass.

There is much work to be done here. Tikkun Olam, heal the world you got, baby, and it is good and honest work of heart to hands, heart to words

written
and spoken
and sung.

–Melinda Coppola