The Man in the Grocery Line

Certain special needs are invisible, or really hard to spot. This can include Autism, in some people. That isn’t Bink’s reality, though. Anyone of the neurotypical persuasion who takes more than a minute to observe my adult daughter will understand that something’s up. The way she carries herself, her frequent self-talk and singing, her hands reaching for my hair and announcing frequently, to nobody in particular, “ Brown girl. Mommy is a girl. Brown girl hair” these things are among the give-aways.

When Bink and I go out in public, people’s reactions to her difference tend to fall into three categories:
1. People are nice, they glance a few times, and then look away, feigning indifference, because staring is not what a well-mannered person does.
2. People are nice, with a curiosity that sometimes crinkles the corners of their lips upward and radiates from their eyes.
3. People are caught up in their own affairs and genuinely do not notice.

In the course of twenty five years, I can count on one hand the number of times that strangers have said or done something truly unkind in reaction to Bink’s other-ness. I attribute this to growing and widespread awareness of Autism and other special needs. I’m also a rather understanding sort. In the face of possibly mean or ignorant behavior, I prefer to assume the other person has a headache, has had a really bad day, or has to pee and has been holding it too long.

Now that you’ve got all that background, let me set the scene for what happened last Sunday. Bink and I went to the market, as we often do. We work on several things there. She looks for items from our list, puts them in the cart, and scans them at the self-checkout. I’m selective about how much she takes on in any given visit, depending on time constraints, and her mood, and mine.

We’d set out with a pretty small list that day, but we ended up with about forty things, because our four felines like their stinky food in individual little cans. We found everything successfully and we headed to one of six self-check registers. Things were going well: she was happy, I was happy, there were no lines. I prompted her through the initial steps. Choose English as the preferred Ms Register voice. Let’s type in our phone number for those valuable gas points. Then I asked her to scan, and set myself up at the end of the belt and prepared to bag.

Bink began the process, picking up each item and looking for the funny lines and numbers that make the lady inside the register talk back. One dollar and sixteen cents. Sixty four cents. Savings: ten cents. And so on. The voice is slow and deliberate, and Bink’s actions usually match the pace. If she can’t find the code, she just turns the item in all different directions until Miss Register responds. She was doing a bang-up job this particular day, adding in her own random comments. “Brown giiiirrl. Two sides?” The three of us –Ms. R, Bink, and bagging Mom, were in a nice slow sync. All was well in the world.

From my vantage point as the bagger I noticed that a man had gotten in line behind us. As Bink did her thing, he seemed more and more…ummm..interested. That’s a polite, assume-the-best word to describe his countenance and demeanor. The more items she scanned, the more man-in-line was interested. As we were getting towards the final third of our checkout experience, he began to sigh loudly and move his body in a subtle dance of impatience. A few more minutes, a few more scanned items later, man-in-line leaned way over to his left and ducked slightly around Bink, almost like she was a shopping cart or a magazine display rack. He seemed eager to catch my attention.

I admit, I almost declined to meet his eyes. It sure seemed like he was not a happy man-in-line, and we were almost finished, and things had gone so well. Bink had scanned more items than she’d ever done before, I’m pretty sure. We thrive on these little triumphs. Anyway, I did meet man’s gaze, and it was then he spoke. “Really??” he asked. I detected a really big pinch of sarcasm.

Really?

Did I mention that there were not big lines at the SIX self-checkout lanes? That means man-in-line had five other places he could have gone to ring himself out.

There were so many things I could have said. In retrospect, the possibilities were tantalizing. I was taken off guard, though, by this man’s words. I’m also, as I think I mentioned, a rather kind sort. Most of the time. To most people. So here’s what I did. Here’s what I said. I stood up a little taller, put a big, genuine smile on my face, and said, “ Yes, she’s doing a GREAT job, isn’t she? “

Man-in-line kind of screwed up his face a little. He paused, and then he muttered, to the floor,” Yeah. Yeah.” Bink completed her scanning, I put our bagged items in the cart, and we left. Two happy women, out the door and home.

Is it possible, dear reader, that man-in-line, who appeared very typical in every way, had one of those less visible special needs? Maybe he had a whopping headache. Maybe he didn’t win the lottery last night—again. Who knows, and we never really do know, do we?

I wonder if compassion can be taught, or if it is an innate thing that lives in some hearts and not others. I wonder what could change if we all went a little out of our way to notice each other with a bit more kindness, to scrape up a little more patience, and to let those words fall more readily out of our mouths,” Good job. You’re doing a really good job.”

–Melinda Coppola

In Times Like These: Silver Linings of Caregiving

THANK YOU, TEDIUM

 

In the midst of the interminable news;
all-bad-all-the-time,
chaos and tragedy,
aftermath and predictions,
close ups and sound bites
that feed worry
and starve hope,
invite helplessness,

inside this swirl,
this modern quotidian,
there is something else,
not exactly calm, but steadier ground,

and I, who have recently
allowed my own heart to rent space
to darkness and fear,
I’ve watched myself mistrust
this solid ground,
guessing it to be the eye
of the larger storm
which I’ve been naming
How Things Are Now.

This morning, my daughter’s needs
rose strong and clear,
as they often do,
and I turned my intention
towards her, and them,
felt cool, hard floor beneath my feet,
and there it all was before me
spread out like a map
for my frayed, lost senses:

The morning tea and
the reading of her dream,

the string of reassurances
against her fears of the day,

the mechanics of a smoothie,
first juice then fruit,
now let’s shield our faces from the splash
of berries into liquid,
now earplugs before blender,

morning pills and
pink shirt, yes,
let’s try the pants again,
this time with the tag in the back,
and oops! Your shoes found the wrong feet,
and can we make those laces nice and tight?

Packed lunch, yes,
the soup is salty,
the pickles tart, yes, yes

yes there will be late sleep on Saturday,
yes, Mom is a girl,
yes we will go out this afternoon,
yes you will have a snack,

and in the thick of this,
our rituals,
a slow, slow dance of repetition,
naming all the parts
of the day,

I almost fell to my knees,
silently thanking
God/Goddess/ That-Which-Makes-Stuff-Happen,
for the ordinary work of caregiving,
sweet tedium
tethering me to the here and now,
almost sacred in its simplicity.

Eyes on task at hand,
heart humming
with the love that fuels
this tending,
binding me to that which is real,
and necessary,
and lifesaving
and true.

 

-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

 

 

 

 

 

 

 

 

Welcome to Autismville

 

Shimmering minnow leaves

AUTISMVILLE

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

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

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

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

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

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

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

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

Melinda Coppola

 

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Dots and Dashes

Shirts must be pink, or occasionally “pool”…

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

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

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

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

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

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

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

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

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

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

 

-Melinda Coppola

 

 

 

 

 

 

CHASING A CHEESE BALL MOON

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December, Massachusetts

This time of year in New England, it’s pitch dark at 4:30pm. I’m working on accepting this gracefully, though I do stray from intention a few times a week into cursing-the-darkness mode.

Last Wednesday, shortly after the early blackness descended, I was navigating the narrow curves of North Street, wondering if every town, in every state/province/territory,  has one—a North Street, that is. I reminded myself to slow a bit, and breathe; trying to time the art class pickup just-so, not early as this creates distress for Bink, not late as that has its own kind of dissonance. Autism is timekeeper and taskmaster in her measured life, and thus in mine.

Pickup complete, we made our way towards home, my voice soft and even as I announced the bright seasonal lights strung across a porch, snaking ‘round a pole, or illuminating an inflatable Santa or snowman bouncing on a lawn in the evening breeze. “ Don’t care. Not pink.”, she muttered. Hmmm. Last December she would chirp excitedly, “ Colorful lights!” as we’d pass the seasonal luminary flourishes. I heaved a sullen internal sigh. I really like watching her change as she gets older, but I’m a bit deflated with this latest assessment: no pink lights, nothing to see here, folks! There are precious few pink Christmas lights, have you noticed?

BUT THEN,

we rounded a corner and there it was, an impossibly huge golden moon hanging low in the sky, fruit-like. It dangled temptingly behind tree branches, then just above the highway. “ Look”, said I, “ The moon is huge tonight.”, and she, who finds no beauty in a sky without pink, she, who is finished with a zoo in moments if there are no bunnies, pink pigs or yellow ducks, she, who shuns so many of the flora and fauna that decorate our world because “not interesting” –- that very same she exclaimed, “Cheese ball!”. The hairs on my arms stood on end under my winter coat, and my mind percolated with delight. A shared interest! Super Guy and I do try to nurture any inclination she shows towards the natural world, and we often look for common ground. He and I can be a bit passionate about the moon, but Bink has not shared that, ever.

We tried to keep the cheese ball in our sights, Bink and I, as the car slogged through the traffic that can be the bane of crowded eastern Massachusetts. The lights—Christmas ones and traffic ones and the neon signs that have settled and bred along the main route—were competing with the cheese in the most irritating way, stealing its glory.

We finally turned into the street that leads to the street that leads to our street, and the cheese floated a little higher in the sky, seemed even brighter and more golden. I pulled the car over and grabbed my iPhone, trying to capture a picture of this enormous and other-worldly orb hovering so close to our mundane street. Bink followed suit, pulling her own iPhone out of her very pink purse and taking a pic or two. Still with me, she was! More percolating, more joy tugging upward, then, at the corners of my mouth. Alas, within the limits of phone camera technology, the photos captured none of the magic. The cheese ball looked like another of the many streetlights. Damn the lighted streets! Then I caught the irony of it, having been unhappy with the darkness just an hour earlier. Had a little laugh at myself, I did.

Glancing at Bink’s face, I could see that I was losing her. She was already checking out of this rare interlude of shared excitement about something, anything. “Let’s try , I said brightly, “ to follow the cheese and see if we can get a better picture!” Taking her silence as assent, I swung the car back onto the road and we made our way through the little maze of familiar streets, keeping the cheese in sight. I drove to the darkest end of street I could find, with cheese ball leading the way. There, behind some apartments, I knew we’d find that odd field of interesting, tall, reedy things that look vaguely like cornstalks in October. Here the golden cheese ball moon stood out in stark relief against the very black sky. I parked the car and we both got out, pausing just a few seconds to enjoy the sound of wind as it moved through the wispy reedy things. I made a quick note to find out what they were formally called, these rooted instruments of the field. Bink was making a low, throaty sound which I knew to be impatience. Any moment now she’d tell me she needed the bathroom. I took a few quick iPhone shots of the cheese floating above the crispy reeds in the still-early evening sky. Not stopping to check them out, we were back inside the car and off towards home.

Home. We got to the bathroom in time ( a constant theme in our lives). The photos remained unimpressive. Bink was, umm, uninterested in them. No matter, for these are the times that sustain me; a rare delight shared by my daughter, a reminder of the humor and wonder and joy of being alive, chasing a cheese ball moon through the neighborhood on a cold, black, early night. God, I love my life.

-Melinda Coppola

 

Dear November

 

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Dear November,

It is a month of tributes to poetry, 30 poems in 30 days in some circles. So, being a bit amiss, Miss Construed, I write a letter instead.

You are special to me, 11th month, in your own glorious, necrotic, achingly beautiful way. I mean, each page in the book of numbers we call calendar, each page, is rich with grief and pleasure, memories of arrivals, and departures, and years of holding on tight while the New England leaves were letting go. But you hold more in your numbered boxes, 30 in all. More happy, more sad, more than some moon cycles combined. Letting go, dear month, is not as easy as the fall flora would have us think.

For starters, one tiny towheaded boy arrived to two Albanian immigrants in Roxbury, MA. It was your 28th day, year 1926. Do you remember? He came up amid hardships, I was told, the kind that I have never known. He came up against violence, I’m told. That I did feel, and see, echoed in my own book of numbers. And from that,

One grown woman, ( that would be me) who thought herself ready, pledged herself to one grown man, who seemed to need my care and want my heart. Your 4th day, year 1989. Does that tickle your memory? There was audience; most invited, like Love, though a young Fear and his wisp of a friend, Worry, also slipped in. Towheaded 1926 dressed up as balding-headed middle age and walked me down the aisle. I matched my step to his. Too fast, I noticed. I sped up anyway. And from that,

1992, your day 15, gave us a child. She was not the only pregnancy, just the only one to make it out of me alive. Did you have a hand in that, November? She was perfect, and there was joy. 1926 and 1989 seemed pleased.

Things got broken along the way. Things often do. 1926 finally learned to let go, and pieces of him became soil, and leaf, and flower. 1989 fell hard and cracked wide open. There are scars, but they are tough and fibrous and have served me well as I raise up one fascinating young woman. She has been, well, sort of dissed by this time and place. She is called dis-abled, she is dis-affiliated with what society calls normal and her very being dis-allows anyone else’s notion of what she should be. A few who claim to love her have so dis-tanced themselves from her that they have essentially dis-appeared. She, though, has dis-assembled my expectations of motherhood, sometimes in the most delightful ways. She will dis-abuse you of your understanding of how words are used, if you let her. She is dis-arming, full of surprises and an innocence that shines. She also dis-tills my meaning-of-life questions in a way my poems never quite do.

And so, November, old friend, you have grown big in my small incarnation. I celebrate you well, the way I wish we all rejoiced when someone dies because we are happy for their soul, because we know they have graduated from the toughest school there is. I salute you and bow down to you for gifting me with the ability to love beyond measure, to mourn and wail and clutch grief way too tight, and then to breathe deeply and let go like the leaves you coax to their next fertile phase, the ground growing rich under your sanguine discipline.

-Melinda Coppola