Inch by Inch

Dear small band of loyal readers,

I’m pleased to share that my poem, Reset, has placed second in the Light of the Stars poetry contest sponsored by Lone Stars magazine, and appears in the Spring 2019 issue. Printed literary journals are becoming less common. More and more of them publish exclusively online, which is, of course, much less expensive. Lone Stars is a paper poetry journal, published in Texas thrice yearly as an offshoot of another paper journal called Conceit, which publishes monthly.  Neither of those has an website, which is why it was an especially nice surprise to receive a check in the mail for my second place win! A modest check, to be sure, but I can count on one hand the number of times I’ve been paid for a poem.  Publishing poetry is a many splendored thing, but financial gain is not usually recognized among the glories.

A nice boost for a dreary Monday morning!

 

With gratitude to you for reading,

Melinda

 

 

 

 

To Sleep, Perchance to Wake and See the Stars

Bink does not sleep solidly through the night, ever. When she was younger it was especially challenging, because she’d wake up and need me to be right there with her, and she’d often be up for hours. Sometimes, after waking at 1 or 2 am, she’d stay up the rest of the night and all through the next day. I was really tired so much of the time. Even so, there was a certain kind of mystery and grace in every aspect of my mothering journey with Bink. Still is.

Years ago I wrote this poem about the night waking. I submitted it to a few journals, and received the customary rejections that are familiar to all writers, maybe especially poets. I decided to try once more to find this poem a home. And, yay! it has just been published in the online literary journal Vitamin ZZZ. The whole journal is quite beautiful and I hope you’ll check it out. You can see it by clicking here. 

The poem:

Night Graces

Each sleep cycle you wake happy, chirping
psalm-songs into the darkness, small
warm circles of air rising from your
curled body,

and you tumble toward my bed,
proclaim morning
whether it is midnight or three or,
more thankfully, five, and I

surface from moondreams
and embrace you,
little Talitha of Ursa Major,
Gemma of Corona Borealis,
insistent beacon,
nudging my fatigue aside so
this perfect view

of the stars,
those glorious jewels of the night,

reveals itself
as the gift it is

and I,
your student, humbly bring
a glass of water.

 

–Melinda Coppola

Daisy Bell

I’m showing my age, and proudly, when I ask this—do you remember the sweet old song called Daisy Bell?

“Daisy, Daisy, tell me your answer, do/ I’m half crazy all for the love of you…”

Those lyrics and that tune lodged itself in my memory when I was nine or ten years old. I can clearly visualize my Aunt Gloria—a professional singer in her day—leaning over the metal cage in my living room and singing that song to Daisy, my little blond guinea pig.

I’ve always loved the simple flower with the unassuming face and the heavy Latin name of Bellis Perennis.  A recent prompt about flowers in a writing group brought forth this little poem:

DAISY

I invited a Daisy to sit with me
under the shadow of a splendid green tree.

The flower politely declined my invite
to rest and converse in the cool filtered light.

Shade, she said, is not my friend.
I’ll lose my petals, my stem will bend.

Give me the sun on my upturned face
and I’ll blossom and multiply all over the place.

Daisy, said I, it’s clearly true
you are my favorite, my favorite is you.

No deception, no thorns, could possibly hide
in your bright yellow head, or your petals so wide

Your beauty is honest, and simple, and true
as flowers go, Daisy, my favorite is you.

 

–Melinda

 

 

There’s no write time

 

BLOCKED

This morning the mirror
caught my eyes,
and I locked gaze
with the creature staring 
back at me, wondering, 
as I sometimes do,
what would happen
if I opted not to claim her.

If I chose a different identity
would the mirror recognize 
my sovereignty
or would it keep reflecting back
this worn face,
these lips closed
tight against all the words
knocking up against 
my clenched teeth,

the half formed stories,
shards of poems 
pushing hard
to get out

as living things do
when imprisoned.

Instinct favors survival.

It’s a wonder we write at all,
any of us,
with the hundred 
duties and the 
thousand doubts
almost conspiring against
our hands, 
which, 
reaching for a pen,

find a text, 
a child’s needs,
three missed calls, 
a basket of laundry,
a long to-do list
instead.

 

–Melinda Coppola

The art that blesses my listening hands

 

 

 

 

 

 

 

Making Art with Beach Stones

My home hums with them–—
the smooth and rough,
pale and dark,
striped, speckled,
some with lines,
or bits of mica
mesmerizing the light.

They number
in the thousands by now,
populating table
and bins and buckets,
lining mantels and
perched on shelves,
all holding the sea,

having chosen to be plucked,
over years,
from their temporary,
sandy homes on beaches,
Massachusetts mostly,
with a Rhode Island minority,
a Florida few.

They called to me as I strolled,
or else I spied them first—
glimmering with sea water

having just rolled in
with latest tide,

or perhaps half buried
among their brethren,
co-habitating peacefully
in their transient villages

along a shore dotted
with shells broken and whole;
scallop and clam, oyster
and the thin,
pale yellow jingle shells,
the occasional smooth sea glass,

strewn with the crunchy brown or
slippery green salty seaweeds,

among seagull leavings
and the remnants
of humans at rest and at play—

and I asked the stones permission,
waited for yes,
cradled them
with my work worn hands,

guided them
into my cloth bag or
scratched bucket.

My home hums, perhaps
three thousand stones,
alive
as you or I,
just vibrating slower,

and they answer
as I approach, as I
hold, inquire
with loving intention,

as I invite them into art forms,
cairns,
ancient and new,
stacks and lean-tos,
bridges and
little families
all supporting one another.

We try one side, then another,
collaborate to find
balance

and then,
then we pause
breathe
feel,
and I wait for their final yes
or not this one, not now.

Together we make magic,
my humble hands
aligning each stone,

knowing
with all my six senses,
when I hear

yes. Right there.
We are perfection now.

 

-Melinda Coppola

 

 

 

 

 

Mothering Outside the Lines

The Bus Stop Moms

From my morning window
I would watch
as they huddled casually,
tossed light conversation
back and forth,

an occasional
eye towards their kids
who played and laughed
together, finding sticks,
tracing shapes and letters
in the dirt.

After the big
yellow bus swallowed
their chattering children,
the moms would often stay
and talk a bit
in the easy way
women do
when they have things-in-common,

like an intact marriage,
and Pilates class,
and typically developing children.

I’d watch them wave to each other
as they’d part,
good-bye, see you later,
the bus stop moms turning
each towards her own
well manicured lawn,
highlighted hair shining in the sun.

I’d guess at market lists,
soccer schedules,
Girl Scouts tomorrow,
Johnny needs new sneakers,
such busy mommy thoughts
dancing in their heads.

From behind a fraying lace curtain
I’d imagine being one of them.
How carefree they must feel,
sending their kids off
without concern
for their obsessions,
compulsions, anxiety,
lack of toileting skills,
inability to communicate.

Without gnawing worry
that today might be the day
she bites the teacher again,
(who tells her to wait for the bathroom),

or rips at her clothes at recess,
(because it’s just too loud),
or has a meltdown during snack time,
(because the juice was the wrong color,
and nobody noticed signs
of the impending storm).

Almost two decades later,
the bus stop moms
are all grown up,
and so am I.

We still live in parallel universes,
they in their emptying nests, kids
off to college,
getting engaged,
traveling the world,

and I rarely compare
my apple to their oranges
these days,
having found the appetite
for what I have been served,

which is another way of saying
we can learn to love
what we’ve been given.

I’m busy slow dancing
a day, a week at a time,
having found my own
special mom circles,

and a different carefree
that doesn’t demand
grades, degrees, weddings,

having found a partner who
loves being her dad.

Different house,
the lawn still unkempt,
the curtain perpetually
in need of replacement,

these days I only peek out
to see the bunnies
so at home
in our untended landscape,
as am I,
as am I.

 

-Melinda Coppola

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

I Write You, I Write You Not

I was thinking about not-writing, which is a special collection of behaviors called Really Uncomfortable Avoidance To Silence The Singing Muse, or RUTS for short. It is practiced by word gatherers of all kinds; novelists, playwrights, essayists, poets. Correction: actually, it’s the creative writers who engage in this behavior. Journalists and reporters have such a direct relationship with the words they use. Their cupboards are all organized and clean, with appropriate words just sitting there obediently on the shelves, waiting to be pulled down and used.

I was earnestly practicing not-writing behaviors, and when Poetry came around with her seductions, wearing her best evening wear and very unsensible shoes, I rebuffed her. “ Come out to play,” she purred, and I could smell her flowery breath, feel the temperature of her neck, her hair. “No,” I replied, “I’m much too busy doing laundry and running errands, answering emails and cleaning the tiny spots on the long striped carpet in front of the kitchen sink.” RUTS type stuff. “But you know this is The Way for you,” she said, “The path through the haze and towards the place where intentions meet commitment, where water flows clean and equanimity rides in on cool breezes to clarify the mental muck.”

“ Poetry,” I sighed, “ I am busy worrying about my daughter, who has had a very rough four months. I am researching novel ways to help her, calling and Internetting and looking at books. She is my heart, and when her rhythm is off, I forget how to dance.”

Poetry leaned against the wall and just watched, listened. Her benign expression irked me. My defenses threw another brick or two onto the wall I imagined between us.

“ Besides, Po, I’ve begun my summer Yoga and Yogabilities™ classes, the latter in a new space on a new day. This takes planning, you know. I don’t have huge chunks of time lying around just waiting to be poemed upon.” I pushed out the last few lines in a gently accusatory manner. Poetry seemed impervious, letting my words bounce off her shimmery gown, which I then noticed was purple. My words got confused right out of their sentences. Some fell to the floor a few feet away from her, other made for the window and smacked into the glass, hard. Stunned, they joined their sad sentence family on the floor.

Poetry shifted a little and kicked off her fantastical shoes, which were just the sort of thing I never wear. She wiggled her toes and arched her back away from the wall and did a few gentle half-neck rolls. (I taught her to do those in lieu of the full rolls, which are simply not good for most people.) Her eyes met mine, and she waited. I knew this game. She’d stand there, or sometimes sit, eyes full of compassionate, irrefutable truth. And she’d wait. And I’d avoid her. And she’d wait some more.

Eventually, if I practice my RUTS hard enough, she leaves. It used to upset me greatly when she finally spun on her heels and left, often slamming the door behind her. (Poetry can be so damn dramatic.) I used to worry that she’d never return, she’d give up on me for good. I know better now. My blood type is Poet, and I can only deny it to a point before it becomes, well, unhealthy for my soul.

So, I was thinking about not-writing, which I’ve been thinking about a lot lately. There have been Very Good Reasons. (See above.) I was sitting and making To Do lists, doing my RUTS exercises and creatively coming up with Even More Reasons.

Poetry came, she spoke, she went silent and waited. This time, she refused to leave. She sat in the corner in her purple, sparkly gown and watched me not-write. She followed me from room to room and even out to the car. She lay down in the backseat as I drove around, took Bink here and there and filled the gas tank. I ignored her, knowing nobody else in my immediate sphere can see her. At one point, after I dropped Bink at her day program, I turned around and addressed her as she lounged across the back seat, seemingly oblivious to the bags of Savers donations and Yoga straps and Bink’s soft pink car blanket. . “Po, don’t you have somewhere else you need to be?”

“Nope,” she said.“ I’ve cleared my calendar. I’m not going to leave until you pick up a pen and write something that isn’t a To Do list or a birthday card. I’m going to follow you like your shadow until you start a poem and nurture it ‘til its natural end. Until you let the words that need to be joined, come together and fly freely through the Earth’s atmosphere. I know you know the world needs poetry more than ever right now and I can’t do it on my own. Rejoin the brave ones who are making their art and writing their songs and poems and reminding people that there is more, much more than Fox and CNN and Facebook and endless division, anger, and greed.”

She said all that. I don’t think I’ve ever heard Poetry say so much at one time. You gotta respect that kind of speech, so full of passion and care and certainty.

I consider my ass gently kicked.

 

-Melinda Coppola

 

Per Annum

Every year, now, around my birthday, I feel a tug to write something, employing words to mark the privilege of completing another ride around the sun. This year’s efforts came in the form of a love letter to my life. Here, below, is an edited version, and though it’s all between me and me, I wonder if you can relate to this need or desire to mark the years somehow, to catalog your journey. Do you write a song, or journal? Do you collect things; a feather, cards, ticket stubs, remnants of days you rushed through, moments you think you’ll never forget, yet know you might?

Dear one,

Last Thursday, we woke to the beginning of our 57th year together. It feels like some things need to be said. Probably nothing I haven’t said before, but I find that I tend to forget things more frequently these days. You, too?

Look, we’ve had our challenges. We rarely seemed to measure up to what the world expected of us. I know that’s just a perspective, but then, so is everything else in life. Conjecture, presumption, supposition….call it what you will, but the truth as I know it is that there isn’t one single way to describe the truth. Everyone sees things their own way, depending on their circumstances, culture, upbringing, It’s the simultaneous bane and beauty of being human , I suppose. But there I go again, digressing. It’s something I’m really good at, at least on paper.

There were times I wished we weren’t together. I’m not proud of this, but I am really, really grateful that you didn’t give up on me.

There were times I belittled you, comparing you to other lives. I know this is a common thing people do, but I also know now it is extremely unhelpful. We get what we get, don’t we? It’s how we look at it, what we do with it, how we react to it, that matters.

There were times, too many to count, that I was blind to our abundance, our cup spilling over with blessings. Now we live in a world that has perfected the art of showing and telling the endless and collected horrors and incivilities and the ways we harm each other, the ways in which we hoard while others starve. Now, it is impossible to ignore the inequity, and it feels criminal to imagine we lack a single thing, you and I, or that we should not be grateful and share generously. Perspective.

At nineteen, I knew my life would be one grand adventure. I’d travel, and give birth to poems and stories, and mother them with a loose and loving abandon. If you’d been clairvoyant, and told me I’d all but neglect my writing, for years and years, throwing it just enough scraps of food to keep it hanging on and hopeful, I’d have been horrified. I’d have told you, in no uncertain terms, how confused you were, and how unfaithful.

I could go on, dear Life, and on some more. I’m good at that, remember? But here’s the gist, here’s the heart of it: I love you. I love the way we’ve unfolded together, warts and scabs and miseries included. I loved our adventurous young adult years, and I’ve grown to love these plodding middle years, too. I love the way I’ve evolved; once a fearful, quirky teenager who knew she didn’t want children, and now a mid-life woman, quirky still, whose days are saturated with mothering, and it’s nothing like I imagined. Things so rarely are.

I love the patience and tenacity you’ve modeled for me, helping me grow my own. Also, Life, I am so grateful for the way you’ve pointed quietly to the journal, the keypad, over and over again without lecturing, allowing me to find my Poet’s voice again. I respect the way you just know we are going through the landscapes we must, with the company we need, at the times we should.

I will never abandon you, dear Life. I know we are in this together, for we are nothing without each other. And here I am , down on my sometimes achy knee, asking you for your hand. Here I am, promising, promising to make all kinds of love to you, with my whole self. Here I am promising to be true to you, which means being true to me, for all the days we may be gifted in this flesh, this venue.

Let’s be what you’ve always known we could be—a helper, a blessing, a teacher….and do what you’ve always known we can do—make poems, and art, and stories, and keep guiding a special young woman towards her own life, which will someday be untangled from mine. Let’s take the raw, rough dough we are offered and throw in yeast and punch it down and let it rise, punch it down again and trust it will rise, be transformed by the heat of all the fires and become something that will nurture, and nourish, and sustain.

Happy Birthday to us.

 

–Melinda Coppola

MORE AUTISM AWARENESS: RITUALS

AUTISM AWARENESS MONTH: DAY 18

Routines and rituals. Don’t we all have them? Under the best of circumstances, they can add order, meaning and beauty to our lives. For many people with autism, they go beyond that, offering comfort, safety, structure, and learning opportunities. Life with Bink is rich with these practices and observances, ranging from daily to weekly to monthly. Many of her practices are entirely her own, needing no interaction to complete. Some involve me and Super Guy. I enjoy some, tolerate others, but over time I’ve grown to appreciate their place in our offbeat life. 

WEEKDAYS

There is the morning wake up song, delivered at 7am sharp. Each day’s song is different, and though they are short little things, I make ‘em up on the spot. Recently, I heard her singing in the next room. It took me a few minutes to realize that she was singing the morning tunes I’d created through the years (and on the fly)! Insert shocked-face emoji here. They were probably in order, too—something she’d remember but I would not.

EVERY MORNING

First, there is the dream journal, a wide ruled notebook set aside for just this purpose. Bink’s scrawled entries might be the thought that just entered her head, or perhaps they are indeed fragments of dreams. That’s a mystery, as it probably ought to be. She scribbles, and I read it aloud. Super Guy is an acceptable stand-in if I’m not available.

A short time later (but within fifteen minutes of her rising), there is a question or comment she texts me. (Bink is actually better with this than she is with face-to-face conversation.) She likes my response to be delivered via brief iPhone video. Sometimes, she asks a question about something current, like why we are not going on a vacation. More often, it is about something from her deep past. Example: “Why when I moved towards Miss S_______, Miss L_______ said sit down in a clementine cheese boy voice?” That might’ve happened ten or twelve years ago, folks, and I wasn’t with her when it occurred. It certainly does keep my creativity sharp coming up with answers to these!

DURING EACH DAY

There are the four household chores she’ll complete with wildly varying degrees of attention and accuracy. She marks each off with a check on her chore chart, a hand drawn thing we devised to help her learn the value of contributing to the household and earning money. There’s a choice of ten chores. Like any of us, she prefers some to others. The vacuum chore is perhaps the most challenging. Though she doesn’t have to do a lot of it to earn a check, there are many steps to the process. There is lugging the heavy vac from the broom closet, delivering it to the area that needs vacuuming, plugging it in, turning it on, and bringing the sweeper to an upright position. Then there is the requisite focus involved. She needs to first remember the purpose of vacuuming, and then to notice whether the random bits of guinea pig litter are actually gone after she moves the machine back and forth over them. Vacuuming is not a favorite task.

Other chore choices are more to her liking, including making her bed (an imprecise effort to turn the clumps of covers into a smooth layer, covering as much of the bed as possible), getting the mail from the mailbox, and helping to shop for food. Emptying the dishwasher used to be something she seemed to like, though that has been changing. Our not-very-old dishwasher has mysteriously failed to clean the food off the dishes about every third or fourth cycle. She hasn’t seemed to notice if there is food caked on the plates and the utensils, and though we oversee what she does, a few food encrusted utensils and a plate or two made it into our cabinets. Now, that chore has the added responsibility of looking to make sure the dishes are actually clean, which means we need to define clean vs. dirty and reinforce this every time. That’s an interesting thing about autism; there can be an extreme scatter of skills and understanding. Bink can often spell a word backwards, but shampooing her hair is an elusive task. She can remember the day, week and month someone said something to her that upset her, but she needs to have a rule to enforce attention to the actual cleanliness of the clean dishes.

Back to the chores list: she is such a rule-bound sort, and this means she is pretty obsessive about completing the chore chart. If daylight is waning and she hasn’t earned those four checks, she’ll tell us, with a certain urgency in her voice, that there needs to be another chore. Since she requires assistance with some tasks and oversight with all of them, on a busy day it can sometimes feel like a chore for all of us to get those checks recorded on her chart!

EACH EVENING

There is the daily recap, again in her scrawl, in a notebook designated for this purpose. The things she writes are almost always limited to what she ate during the day, and one memorable activity or outing. If someone has said something to her that she didn’t like, or in a tone she felt was harsh , that will make it’s way into the narrative as well. She wants me (or Super Guy) to read this aloud to her, but with no questions, please.

Next, after teeth are brushed and she is ready to get into bed, she wants an oral recap of what she did that day. She also wants to hear about what will happen the next day. This must include a reassurance that she’ll have a treat. ( Think tasty little snack, preferably sweet). There will be somewhere between five and fifteen nose binks and hair feels during this little ritual, depending on her anxiety level. This whole process has proved difficult when a caregiver was with her at bedtime, because she couldn’t know what had happened that day or what the next day would hold, so Bink accepts this good night ritual only from me. When I am not available, she just goes straight to bed.

WEEKLY

Each Friday afternoon, Bink presents me with a list of ten questions that she wants me to answer. Here’s the catch: she wants them answered as if I was a different person (or thing!). On the list she specifies who or what I should channel when I answer.

This can be as straightforward as Questions for Ms. K________, answered by Mom the way she thinks Ms. K________ would answer them. It can be as obtuse as Questions for I Had a Little Overcoat sung by Raul Malo, answered by Mom the way she thinks I Had a Little Overcoat sung by Raul Malo would answer them. Yep, that’s a song, folks, and a specific version at that. And so I do my best to answer each question as I think that former teacher might answer them, or a particular version of a particular song might answer them, and I leave the completed questions and answers, typed up neatly, on the table the following Friday, so they’ll be there when she returns home from her day program. If she isn’t attending her program that Friday, she wants them to be on the table when she wakes up.

I have many, many lists of these answered questions in a file on my computer. Sometimes, there are multiple volumes of questions for the same person or thing. Forty two Volumes of questions for Miss E_______, for example, or twenty eight volumes of Questions for Old P_______________ Road basement.

Why do I do this? I’ve discovered, over the years, that she learns a great deal from these questions and answers. They help her begin to understand things from a different perspective, which is no small thing for someone with autism. Miss K_________, Miss E_______, and any number of others have perplexed her with their words and actions. They are no longer around for her to speak with, or if they are, they typically have neither the time nor the patience to answer these questions, especially when they are repetitive.

She doesn’t understand some of the things that happened in that old basement in that former house. Why were there toys stored down there? Why didn’t she play there more often? These things stay with her and can cause her a great deal of anxiety and discomfort. She wasn’t able to articulate most of her fears and curiosities when she was younger. Now she can express some of them, and her weekly inquiries are a tool that allows her to consider and absorb more about the world around her. Over time and after many, many repetitive questions and their answers, she is beginning to grasp concepts that you and I take utterly for granted. People are all different, for example. Sometimes, they get angry, or impatient, or sad. Songs can come in many versions and be sung by many different artists. Basements are places people store things.

Saturday night, there is the new chore chart we’ll put up on the refrigerator door, which is also when she receives her pay for completing the previous week’s duties.

There is the Sunday selection of a recipe that she will make with me or Super Guy. This is usually a stew or soup that she will take to her day program during the week for lunches. There is the grocery shopping to buy ingredients for it, and then the actual cooking.

MONTHLY

On the last day of each month, her whiteboard calendar gets wiped clean, so it can be recreated for the coming month. Here, we list all the things we can know about in advance. Her activities, days off, and appointments are written out in erasable colored markers. This is an important thing for Bink, who is calmed by knowing what she can look forward to. It’s also an opportunity to review coping strategies, for those scary things like medical and dental appointments.

On the first of each month, there is the CD that Bink will make with Super Guy. This consists of ten songs that she will have preselected, and he will burn them onto a blank CD from iTunes. She’ll make artwork for the cover, and give it a creative name like Bumble of the Genevieve or Yellow Sunseed Girl. In the last few years, she’s favored titling these CDs with a female name and a fruit. Apple Cara, for example, or Cherry Dianne. We have dozens and dozens of these gems. The girl loves her music, and she will be able to sing a CD from memory, in order. When she is swinging in the backyard, she’ll generally be out there just as long as it takes for her to belt out a whole CD, and not a minute more.

There are other rituals that aren’t quite as prescribed. Upon eyeing a yellow car when we are driving, she will half yell/half sing the word Duck! The color of the vehicle must be just the right shade, though—not every yellow looks like a duck. Another car ritual involves her spotting a license plate with triple or quadruple numbers on it. They must be in a row, not divided on the plate. Then she’ll proclaim what she has seen. “ Triple eights!”, or, “ Quadruple fives!”. Interestingly, she is not saying these things to engage the driver, does not particularly care whether anyone responds. She just needs to blurt out her findings, and seems quite pleased with this.

Sometimes, well-meaning people have been critical of my parenting or of the ways Super Guy and I sustain these oddish practices. Some have implied that we coddle her too much, or that we oughtn’t acquiesce to routines that may seem childish.

There is a saying that goes something like this: When you’ve met one person with autism, you’ve met one person with autism. There is no one-size-fits-all description of a person on the spectrum. That said, all my experiences and understanding point to something universal: the world is a really confusing, challenging place for those who are wired differently. Things that you and I just naturally absorbed along the way and take quite for granted can seem foreign and nonsensical for Bink and others like her. She learns differently, in her own time, and repetition is key.

The rules that go with rituals and routines form a safe space for Bink. Within the comfort of the boundaries they provide, and with gentle and patient responses to her different ways of questioning, she is able to understand more about this confusing world.

Of course, Super Guy and I won’t be here forever to help her through things. We are here now, though, and we have a weighty responsibility to do everything we can to prepare her for eventual life without us. Our rituals and routines, rather than holding her back, have been an important part of her successes. They can change over time, as she changes. Eventually, the rituals may well be things she alone participates in, to calm and ground her. I find no negative in holding on to a coping skill that harms none. The more she understands about the world around her and the people who populate it, the better her chances for a meaningful, safe and comfortable life. That’s what we want for her. She deserves nothing less.

–Melinda Coppola

 

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