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

BRIDGES

We are pausing on a bridge
over the dwindling stream
that crawls through our large,
local dollop of green, Bird Park,

because we always pause, she and I,
on every little bridge
that spans any river anywhere,

so she can look down
from first one side,
then the other,
at that liquid light
which is water in the daytime,

one of many rituals
that string our days and months
together
like a prayer flag.

I watch her watching water,
wondering if she notices
how much thinner the stream
than just last week,

and my ear goes towards the toddler
just arrived and
tumbling in the grass nearby,
which calls my gaze there, too.

The child laughs and spins
as her female loving presence-
Mother, Nanny—tosses a little pink ball.

Too quickly to stop,
ball is rolling into stream.
Just as fast,
the child’s laughter turns to wails,
improbably huge, garish sounds
from such a small body,

and my gaze shifts back to daughter,
who is now squinting,
now covering her ears,
turning away from bridge and water
and back towards the safety of the path
leading away from wailing child.

Now daughter is tense,
and each person, each dog we pass
might be a reason to become undone,
an insult to the tightly wound
system of nerves and cellular memories
ticking in linear, illogical time

and I think of all of us,
everywhere,
living with and without Autism,
carrying years of triggers,
a hundred reasons to become undone,

and how we are each,
at any given hour, maybe
a few breaths away from meltdown,

and the marvel is
how we hold it together,
or pretend to,
in a time when mass shootings
are just a few more storms
punctuating the news cycle,
and everything seems cracked,
precarious.

We find the safety of the car,
she and I,
and an hour later she is
singing in the market,
luscious bluesy notes
in perfect pitch,

and my own triggers recede,
and I think yes,
yes, this is how we go on.

This is how we’ll go on.

 

-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

 

 

 

 

 

 

7 AM ( more autism awareness) | Autism

7am

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

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

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

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

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

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

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

-Melinda Coppola

Light it up blue?

 

Autism Awareness month is April,
World Autism Awareness Day, April 2
and, in case the day lacks color,
(as if any day with Autism in it could be dull),
the mysterious Namers-of-Days-and-months
have painted it a medium sort of blue.

I wonder who decided this;
and how it was chosen,
this perfectly ordinary second day,
and weighted with a long middle
moniker, like a fish
plucked out of the ocean,
tagged and thrown back
into what used to be
a perfectly ordinary fourth month.
And why a color? Why this one?
Does Autism look like blue
to outsiders?

Pondering this, I roll up my sleeves,
prep the tub for her,
the one who turned my life on its ear,
she who makes me laugh,
she who wears me out,
she who is a master of repetition,
she who defies reduction,
who is multi-colored, many-hued.

She who is unaware of your awareness,
who, if asked, would mutter “ Not interesting”,
she who needs help with a bath
but can take a thing
and spell it backwards,
report to the air/no one in particular
how many redundant vowels it contains,
and how her lunch reminds her
of Home on the Range.

She who hears songs in color,
who does not stay in her bed all night,
who is frightened of beads with holes,
she who knows if there’s a day to be aware of
it’s the fourth Friday in February,
which is called Ate Baby Kate, and that means bad,
and therefore must be worried about
many months in advance,
she who can sing whole CDs in order,
she who tells me thirty times a day
that I’m a girl ( in case I forget)

She who needs more than I have
who gives more than I need
who has more than you think,
who is more, so much more,
than you give her credit for.

And so, dear you-who-aren’t-aware,
please allow me to set the record straight.
Autism is multi-colored,
and awareness is every single day,
and no blue second day of any fourth month
will ever matter more
than your interest, your kindness, your respect,
your willingness to help us challenge
a world that would reduce anyone
to an assumption
or a label
in one color
on one day
within one month.

-Melinda Coppola

 

 

 

 

Autism Nation

Autism Nation

fullsizerender

My same different daughter
at twenty three years,
is riddled with anxiety
and complicated fears

Loose beads with holes —
they should be on a string! —
and thunder and lightening,
that power failure they may bring

My same different daughter
moves mountains each day
just to get through the hours,
OCD in her way

She struggles with things
many learn when quite young,
like shampoo, and shower,
and how clothing is hung.

My same different daughter
comprehends, then forgets
she clings to routine,
is indifferent to pets

My daughter, same difference
can be quite verbose
you can think it nonsense
but if you listen, real close,

you’ll begin to glimpse patterns,
and reasons, and more;
you’ll notice her humor,
literal to the core

My same different daughter
sees colors in song
she smiles when she’s anxious
and we get it all wrong

My different same girl
offers such fresh perspective
makes all of their judgments
seem so like invective

My quite different daughter
hasn’t the least bit of care
what you think of her outfit
or how often you stare

My sweet same daughter
gets so much just right
she’s happy with little
prefers loose to tight

Her laugh is heard rarely
but oh! when it flows
she bubbles with joy
from her nose to her toes.

Dear daughter, so different
is teaching me well
about patience, acceptance, and
how none can truly tell

What’s inside the mind,
and the soul, and the heart
of one labeled with autism
of one who stands apart

This daughter, same as you
in the eyes of Creation
is part of the rainbow
which is Autism Nation.

–Melinda Coppola