Little Things

It was, in my home, an ordinary weekend morning. I rose before him, he before her, the felines were fed. I made three different kinds of tea, two prepared with stevia and soymilk, one with honey.

It was the latter that sparked it. She who has such challenges, she who’s made such gains, she whom we encourage towards greater independence, (which is such a big word for a collection of rather little things), she rose from the table for more sweetness, and he, who loves her like a daughter, was making his own breakfast, standing right in front of the lazy susan, home to the nectars—clover and wildflower, and the raw, local blend that boosts immunity.

“Excuse me.” she said, and lest you think nothing of those words coming from that young woman, I tell you manners are a milestone in this autism infused home.

He stepped aside, she went for the good stuff, picked up an unopened jar when there was an open one there too. He, who can be less patient than I, told her to put it back and find the open jar instead. From across the kitchen, I saw the signs. Her face tightened. Her hunch grew hunchier. Her hands began to flap. “ I need a break!” she said. Such advocacy! And often, those words are enough. Girl gets her space, and life goes on.

This particular morning, he-who-loves-her-so felt the honey task was within her abilities. He was also maybe tired, a little cranky. And so he pushed back. “ Bink, take a deep breath. Look for the open honey and use that instead.”

It was too much. Her hand darted out, her fingernails clawed his forearm and she grasped the muscle, skin, and hair there. “ OWWWWW!” he yelped. “ That HURT me!”  Bink was off the rails. Superguy, who is usually calmer, wasn’t far behind her. I intervened with soothing tones and smoothed it, smoothed it, as I am prone to do.

To his credit, he settled well before she did. After an intermission, we had a meeting to rehash the events. “ It was too many instructions,” she said. “ But still….,” he replied. We talked about ways to avoid a situation like this in the future. Bink’s outbursts and aggressions have lessened dramatically over the years, so when they occur now we try to address them head on, after the storm. We meet, we identify triggers. We strategize and together we come up with rules that make sense to her. I am, generally, the one who remains even tempered and toned. I am her safe harbor, and also his. It’s a balancing I’ve grown proficient at finding and demonstrating.

It was what happened later that sparked something wild inside me.

Mid-morning, I was at the table in the dining area that is open to the kitchen. That table is a multi use surface for us. We eat there, and fold laundry there. Writing is done, art is made, bills are paid. I heard something unusual, and looked over to find Bink opening the lazy susan and turning it, finding the honey. She looked at all the jars, selected the open one, and put it on the counter. Then she picked it up, put it back in its place, and maneuvered the awkward folding door into the closed position.

“ Bink,” I asked, “what are you doing?” “I fixed it!” she said triumphantly.

She had, on her own, done a do-over. She recreated the scenario as best she could and practiced finding the open honey, taking it out, and then putting it away again!! This was, and is, a totally new thing. A small thing that was beautifully important and large in its meaning.

Did I praise her? You bet. In fact, I called Superguy in and explained what had occurred, and he was blown away as well.

I have a decorative painted sign that sits over one of my favorite framed art prints in my kitchen. It’s the little things, it says. There are tiny lovely potted plants painted on either side of the words, and the whole small rectangular piece is bordered in gold. It’s one of my favorite things to look at in my home.

It’s the little things, indeed.

–Melinda Coppola

SHE and DOE

 

 

 

 

 

 

 

It was a few years ago that I found myself meandering in a quaint little town in western Massachusetts, about two hours east of home. I saw the sign, which read, simply, THRIFT. As a a fervent fan of space and simplicity, I practice de-cluttering my home and head regularly. I’m quite aware of not accumulating more things. Even so, I turned towards the door of the shop, reminding myself that it can be a very good thing to be free of an agenda.  Like many of you, wandering with an unhurried pace is a novelty in my daily life.

I was on a personal retreat for a few days, a very welcome respite from my 24/7 role of caregiver to Bink, my adult daughter with special needs. This big chunk of alone time was (and is) rare and precious in my life circumstances.

The shop was crammed full of everything I could imagine a thrift shop can hold; quilts and vases, books and jewelry, furniture and tools and clothing. Toys, rugs, artwork, decorative tchotchkes, lamps CDs, and vinyl records all vied for space on the haphazardly placed shelves and tables. I made several loops around the store, noticing new things each time. It was on my last lap that I spotted her, spotted them, half hidden behind some dirty old pots and a breadbox.

I was immediately drawn to the creamy ivory color, the smooth texture, and the way the woman was kneeling and offering her hands to the doe with the chipped ear. My heart flooded with peace, and I felt this sculpture to be the perfect symbol of the life I long to embody. The kneeling woman radiated serenity and compassion as she connected to the female deer, who is herself a symbol of gentleness and heart energy. I clearly had to adopt them, the she and the deer, no matter the cost.

I slowly moved the objects that kept this beautiful duo half hidden, and lifted them to my chest and into the light. To my surprise, the price on the bottom of the sculpture read $22.95 I bought it and wrapped it carefully in the blanket which stays in my car for Bink, who uses it for comfort in the passenger seat.

I returned home after my few days away, feeling replenished and calm despite a number of daily phone calls and text messages while I was away. Bink was quite anxious with me gone, despite the competent, loving care of Superguy, her rather amazing stepdad.

I carried the sculpture around the house, trying a few different locations, asking the newly adopted ones where they might feel most comfortable. They ended up on a shelf in my home office, where woman and doe continue to radiate a deep and perfect peace. Each time I look at them,  I am convinced they were sent to me as reminders from Source that all will be well, and I take a wild and hearty comfort there.

What about you, dear reader? Are there a few special items that hold great meaning for you? If you were moving and had to select just a few non essentials, what would they be? I welcome your response here in the comments section of this blog, or via email.

-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

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Rocking the cosmic swirl

Rocking

It comforts me to know the old
couple across the street
just celebrated fifty years

in the same house. Fifty together years
with the home they perhaps chose
to be new in together,
a threesome of sorts,
their bodies joining brick
and hardened earth
settling and cracking
and pressing together,

adding more spackle
and grout
and laughter

with a child, then three more,
adding rooms
to contain the growing
and the mirth
and the tears
of those who were
fledged,
now gone.

When my soul grows weary
traversing tightropes—
such fast-paced, overloaded,
know-too-much times—
I look across the street,

to the wise and wizened pair
who are ever so busy
slowly rocking, in their old chairs,
on the porch,

and it consoles me to witness them,
soothes me to consider
the old ways of houses
and their people,
and the history of aged dwellings anywhere,
the ways these wood and stone
talismans seem to lean into
a wind or two that can elicit creaks,
groans even,

and their occupants
maybe know
they are being held up
by sagging floorboards
and crumbling plaster,
and the roof is losing shingles
fast as hairs on their heads,

yet they rock, and nod,
and smile
as if to say

where are you rushing to,
and don’t you know
all things fall apart.
We do, too,

so why not sit awhile,
give the swirling
sediment of your ancestors,
and the greening pollen
that falls from the trees
like stardust in the daytime,
a place to land.

See how the wind marries the light,
begets little particles of evidence
that you’re alive,
that others have been, too,
and ragweed and dander,
detritus of the whole cosmic swirl,

touch down on your arms,
have little dances
before they settle there.

 

–Melinda Coppola

 

 

 

So many ways to say it. Be Here Now.

 

 

 

 

 

Between

Opening the red door to a new spring day.
my feet greet crumbs of last year’s leaves,
dotted with recent, light green pollen
all swirled into the little cove, entry
that guides me into and from
this place, this home,

and they rattle a brittle kind of music
together, new and old,
crunchy and soft,
before I even lift a sneakered foot
across the threshold.

There it is—a word, a season, a sound;
threshold, May, music,
and my mind goes to all the beginnings;
friends welcoming grandchildren,
my niece with a new Master’s degree,
and last eve, baby bunnies
shaped like promise
against the lovely, later dusk
in the front yard.

A poem, a sign,
seasons bumping up against
each other, and my mind
goes to all the endings;
one woman struggling with reason
in the wake of her husband’s suicide,
another, across the world, daily grieving
her young daughter,
who would be nearly eight now,
taken by a disease deemed too rare
to fund research for a cure.

Endings, beginnings, the seasons
tireless with their lesson plans,
and somewhere between
the celebrants
and mourners,
the rest of us keep forgetting
to be alive while we live,

and the wind keeps
reminding us—
breathe, breathe,
this too shall pass,
you too,

so be urgent with this
moment, press your face
into the grass,
let the musky earth
fill your senses,

get dirty
get wet,
leave the laundry
for another day.

 

-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

 

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.

 

Inner Child Remembers

young melinda coppola

Before The Tax

that adolescence imposes on body, mind, and spirit, probably in that order, there were hearty chunks of time that were some sort of unencumbered.

Inner Child remembers

discovering the fairies living well in tall flowers near the sandbox. How I loved to honor them, grabbing kid-sized chubby handfuls of sand and running through the tall stalks flinging the tiny granules. Oh, the sounds that Fairy Dust made! Songs in my ears and in my half-fairy heart. The magic-making kind.

The woods, the woods, the woods, acres of them, full of Brownies and Fairies and adventure. Long and free and wild days spent roaming the neighborhood, without fear or consequence.

On the first of May, I’d gather flowers from the garden and form them into weedy little bouquets. Carrying the wilting lovelies in my hands, I’d traipse ‘round to the neighbors. I’d stand on tiptoe to ring the doorbell, then place a bunch on the front steps, and dash out of sight.

One Christmas there was a little rubber duck, yellow. One of my older brothers had “wrapped” this for me by putting it into a huge box which he taped up. Made me wonder every minute until I got to open it. I loved that little duck so much, I’m quite sure it was my favorite gift that season.

Playing dress-up in the odd eaves above the stairs: I’d search the large steamer trunk housing big old velvet dresses, shapeless, and shawls. Layering myself in their heavy elegance, screwing rhinestones into my tender earlobes, shoving my small feet into pointy-toed high heels. I knew I was beautiful because nobody told me otherwise.

There was chocolate, sweet and smooth, melting in my hands, on my lips. There was the utter abandon of living well in my skin, loving having a body. No shame in me, yet. The eating for pleasure, until full, no thought of waist size or the “virtues” of making less of oneself.

Singing! Fancying myself an opera star, I’d belt out song after song, my 7 year old soprano notes echoing down the hall of that old childhood home.

After we moved from the big old white house with the gardens that housed fairies, I bonded with the small stream that ran through the new land. How I loved the deep mysterious smells of it, and the way it grew crayfish and little minnow things, and rotting leaves and mosses hugging stones.

There was the dreaming of horses, seeing myself riding them bareback and poised and strong.

Inner Child also remembers

watching poems write themselves, my hand dancing as the words flowed onto a notebook at my desk at the window.

There were the family trips to Cape Cod beaches in summer. My three siblings, my parents and I would cram into the wood-sided station wagon along with coolers and fishing poles, towels and beach toys. I rode in the way back, no such thing as seat belts then. At the end of the day, returning home, the tail lights of the other cars were Martian space ships. In fact, I was inevitably kidnapped by them, and they were forever whisking me away to an even better life.
—Melinda Coppola

WHO WILL SING? Autism, Adulthood, and Home

Bink and the big, wide sea

 

WHO WILL SING?

She gets older, this daughter of mine,
as do I, and the heavy question behind
each day, and woven now into each year:
what about when I’m gone?

She can’t live with you forever
I’m told, and I know this to be true.
Some of her peers, twenty-ish,
thirty-ish, middle aged,
have gone to group homes,
happily or not so,

and still the world spins,
and more questions arise,
for the options aren’t
pretty or plentiful,
and my imaginings vacillate
between dark and bleak.

Who will sing to her, mornings,
and guard the rituals
that define her boundaries?

There are the questions she asks
of songs, or objects, or days,
or other people, some of them dead,
some she has no contact with,
and I am to answer them
as if I am that person, that thing,
ten a week, typed up by Friday at 3pm.

There is the morning question or statement, often cryptic,
and she anxiously awaits my videotaped response,
though I am in the same room.

There is the crucial, long enough pause
between activities,
the deciphering of scrawled dreams,
decoding her language
in time to understand
she means This
and not That,

planning the next day’s snack,
next week’s lunch,
offering the hair,
two sided and girl shaped,

reminding and re-answering
a hundred times a day,
why him and not her,
why people say this,
do that,

what it means to advocate
in front of people,
in real time,
rather than to the air,
in a corner, hours later?

You say
she will adjust.
You say
she will deal,
must learn to cope,

and if I weren’t so damned appropriate
I’d ask you what it would be like
if someone took control of your every activity
because it’s easier that way,
(for them),
because they don’t understand
what you need,
because there are four or five others
living with you
who need things too,

what if the notes, the records,
the story of your life,
were left in a drawer somewhere,
unread, or read only once
by a supervisor
in an office somewhere,
and

what would it be like
if your clothes were too
rough against your skin,
and you didn’t have the words,
or, if you did,
they came out a month, a year later,
and so you had to wear these garments
that sandpapered your tender flesh

and then when you scratched your arms
til you bled,
what if you were given
a behavioral plan to curb
that thing you were doing to cope?

I’d ask you what it would be like
if the proverbial walls of your house ,
the very things you count on
to be there, day after day,
your schedule, your calendar,
your To-Do list,
were erased one day,
and the people you count on,
let’s call them staff,
changed every few months,
and didn’t read the notes about you,
or forgot what was in them,

and you were expected to be compliant,
do as you’re told,
and deal with it,
even if you didn’t like
the food you were given,
the activities you were driven to,
the staff who you relied on
for food, for a bath,
the others who shared the place
you are now supposed to call home?

Too attached, you say?
Am I melodramatic, or just well read?

You do the research,
ask around,
go check out the houses
you say she should live in,
be the fly on the wall,
and the report back to me, please.

I distract myself
with the gifts, the burdens,
the details of her life.
Tea too hot,
song too rough,,
packed lunch was uninteresting,
everything needs more salt.

In the land of Autism
the tiniest thing
can make or break a day,

and when it breaks—
the day, or my heart—
when it breaks
the healing is slow, uneven,
and the memory of every assault
on the nervous system,
hers or mine,
seems imprinted on the walls
of her cells, of this place
she calls her home,

but here we incorporate it into the décor,
write poems about it,
scratch an itch against the rough
patch in the plaster.

We make it all right.

All right then,
Tell me true—
Who will sing to her
When I’m gone,
Who will sing?

 

-Melinda Coppola

 

 

 

 

 

 

 

 

HOME

The past few days I’ve had home humming in my head and heart. Not my physical dwelling, but rather the whole concept of it: home. It’s a loaded word, to say the least. But I rarely say the least… at least not with pen to paper.

Recently, Super Guy and I visited an animal sanctuary. It’s a magical place with paths and paddocks, ponds and portals; little homes on posts, myriad small barns and shelters and cubbies and soft, warm sleep spots, bowls of food and bales of hay. It’s home to creatures of all sorts who were victims of the transposed violence and dark dysfunction that can live within the human psyche. These animals were mistreated by their previous owners, and the sanctuary provides a place they can heal and perhaps begin to trust again. To paraphrase an old, old song. I wondered as I wandered. What shifts, great and small, could occur that might eliminate or drastically reduce the need to rescue animals from human abuse and neglect?

Here, in this home in the woods, are cats, dogs, horses, donkeys, pigs, bunnies, llamas, goats, sheep, chickens, ducks, geese, doves, peacocks, and, variably, many other expressions of God. These creatures may be one-eyed or deaf, missing a leg or broken winged, living with chronic illness and/or suffering from post traumatic stress – more and than or–  from the inhumane treatment of their previous owners. And, in this place, they are finally welcomed home.

As I walked the paths of the sanctuary with my creature-loving partner ( oh, how I love this about him!), together we greeted the rescued residents, pet the ones that allowed it. I took in the smells and sounds and sights; colors and textures and strange juxtapositions that are foreign to me, to most of us—creatures so different, living together in apparent reasonable harmony. Possible, perhaps, because all are well-fed, well-housed, respected for their particular needs for space, freedom, and safety…places to burrow in? And I thought, too, of the larger world we, who speak this human language, call home. A world full of rules and laws, customs and traditions, that we have created for ourselves, and continue to create. Lately, we hear a lot about the unpleasant effects of some of those laws, rules, customs: strife and anger and injustice and poverty and violence perpetuated, human against human, with sad justifications like:

different
– not as s/he should be

not like me and mine.

Or, sadder still,
That’s just the way things are … .in the Middle East, in the inner city. In that culture, those religions.

And
-That’s what comes with being black, or brown, or female, or poor. That’s just the way it is.

That afternoon, at the animal sanctuary, I walked in step with a wondering that felt more urgent than sublime. What kind of world might it be if all people had a safe and comfortable place to call home? If all people were well-fed, well-housed, respected for their individual needs for space, and freedom, and safety? What might happen to the imbedded acceptance of those justifications for human-to-human violence and subjugation? And, how much might such a world reduce the need to rescue animals from abuse and neglect?

We are all connected. No matter how hard we may try to ignore this, personal action, positive or negative, ripples outward into families, communities, countries, and our larger home, Earth. What are we willing to give up, or change, or invest in, that can move us towards a time and place where Earth -our home– is a sanctuary for all?

-Melinda Coppola