Dear Future Roadmaker

It’s still April, still Autism Awareness month. I’m thinking, as I so often do, of all the people I have met on my journey of raising a daughter with special needs.

There have been some wonderful teachers and some exceptional therapists (physical, occupational, speech and language, to name a few). There have been good hearted caregivers, van drivers, and medical professionals of all kinds that have made a huge difference in her life, and mine. There were, and are, folks from various agencies providing information about and access to services and assistance. There has been an unfortunate number of people from each of those categories that were not helpful, supportive or kind as well, and a few who brought great distress to Bink and to those who love her.

And then there are the other parents. I am a woman of many words, but I cannot adequately find the right ones to describe the love, support and comfort I have found in a tribe of others who are parenting an individual (or two) with special challenges. Most, but not all, are mothers. I’ve known some for over 20 years, and some less than a year. I am certain there will be many more I’ll come to know along the way. Some have children with multiple or well defined diagnoses. Some are parenting in the grey zone, struggling to find their children of all ages the help that might coax them to leave the house, or find a little job––a foothold in a world that has little patience for those who look “normal” but struggle to function on their own.

We lift each other up. We listen deeply, hearing the unsaid words beneath and between the audible ones. We try to check in on each other. Sometimes, it’s as simple as a ” How is _____ doing?” And a sigh or a quiet ” Just OK.” can speak volumes. If one of us learns of a new way to get help or a new service, program or activity, we want to make sure we share that information. We also understand how very possible it is to have no time or energy to communicate for many months at a time.

So many parents have helped me along the way. It’s important for me to try to do the same, especially for those with younger and/or more recently identified children. The following poem came from this place of deep appreciation and desire to be there for others who are walking the same road.

Dear Future Road Maker

I promise
this will pass.
Not the diagnosis, of course,
not your cellular memories
of initial shock, sadness, despair.

But this crisis,
the one that’s shredded
your equanimity,
kept you up some nights
for months,

the one that involves biting
and teachers,
veiled threats from
Those Who Decide
that Johnny may not be appropriate
for their coveted program,

the lauded school
that took
five meetings,
twelve months,
most of your energy
and an attorney
to finally welcome him
into their fold,

It will pass.

Toilet training:
Above all
don’t despair,
I can tell he’s going to get it,
nine is not too late
in our world.
Give it time.

Your current devastations;
Johnny rides the short bus
and there’ll be
no prom,
no diploma,
no college or
wedding or
career—
this will pass,
give it time,
these things will fade
into insignificance,

and besides
short bus=fewer students,
fewer stops,
less sensory overload,
and sometimes,
a kinder driver.

There are special proms,
if he is so inclined,
and nice certificates
of completion, now.

Take a breath,
safeguard your energy,
for you will need
every precious bit.

Choose your battles,
don’t try to war
in many places
at once,

and know this:
I am here,
and there are many of us,
veterans who faced
that forest,
stepped into the dark
growth and
trod the faint
paths left
by those who came before us,
and we are
making roads of them.

Don’t underestimate yourself
or your son.

You will both grow callouses,
you’ll know such triumphs,
and despairs you fear
will wreck you.

They will not.
You will emerge tougher,
a warrior advocate,
and we’ll be there,
all the road makers,
cheering,

and someday
that documented
list of deficits,
all his Johnny-can’ts
and Johnny-won’ts
will cease to faze you.

Mama lion,
future road maker,
mark my fervent words:

Your child,
son of your heart,
will surprise you
and amaze you
and make you
very,
very
proud.

–Melinda Coppola

April is…

I’m truly grateful to be here to greet another April. It’s such a hopeful month, with spring springing up everywhere. This month is also known as Autism Awareness Month. To those who love someone who lives with autism, every month, week, and day is a new chance to be aware. Insert my face with a pleasantly wry smile here.

Bink appears younger than her twenty six years. She could easily pass for sixteen. When we are out in the world doing the things we do, people will sometimes ask me,” How old is she?”  If I’m reasonably well rested and have my patience and understanding handy, (the extra stuff I save for strangers) I’ll smile and turn to Bink. “ Would you like to tell him/her how old you are?” If I’m running low on all that, I might just assuage their curiosity by telling them Bink’s age. Occasionally, if I’m really worn thin I’ll just pretend I didn’t hear the question. The alternative would be to answer their question with my own, and I might not smile at all when I say, ” Ummm, she’s right here. Why don’t you ask her?”  I rarely go there, because I truly believe that most people mean well. We’ve all just amassed a bunch of suppositions, based on our lived experience.

Sometimes, I imagine my daughter as one of a million special messengers from the great beyond. Perhaps her given mission is to offer a pause button, to give observers an opportunity to alter their assumptions. Her perceptions are so very different than what is considered mainstream. They have the power to shake interested minds in a gentle way, like a breeze shakes the leaves on the trees.

I offer my directive with the very best intention: Presume competence, people. Please.

 

—Melinda Coppola

Our small eyes

Perchance

Perhaps nothing begins
or ends,
not exactly.

The field mouse knows
the tall grass
to be her world.

We say
morning comes,
and yet
it is always
somewhere,

just not in the very front
of our small eyes.

The trees are wise.
They know everything cycles,
seed to sapling,
strong trunk reaches skyward,,
and wind-felled trunk
becomes home for owl
and mushroom,
then fertilizer for forest floor.

Last night
something gentle
grasped my hand,
and I turned towards my partner
who wasn’t there.

Perhaps death
is neither end
nor beginning,
and that
which we name loss
is just a shift
beyond our modest
range of vision.

I want to think
my father came to visit,
or one of my grandmothers.
just to reassure,
just to say,
in Albanian—
which they wanted me to know—
just to say
It’s all going to be alright.

 

_Melinda Coppola

 

 

 

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Love is a Rendering

Love is a Rendering

 

Telling you how I love you
is like trying to find things
that haven’t been said
about the ocean.

My hands prefer to paint it—
affection, water—
sweeping, striped backgrounds,
turquoise and deep
salient greens,
silvery whites frosting
every liquid peak,

and there’s the sky
hovering above the seas
like a mother,
cooing and cajoling
smoother, smoother now.
You mustn’t tip the boats,
or dunk the sailors.

On the shore, wild
coastly rocks, and
the dark of cast-off
tree limbs
adding interest and balance
to the composition.

Further inland,
I love you like new snow
frosts the grass,
like blue melds with ebony
to make the nocturnal sky
sing midnight,

like the way those
ensuing wee hours test
the nerves of first time
campers
in their thin tents
along random pieces
of the Appalachian trail,

but fear doesn’t win,
dawn always triumphs,
breaking their sleepless faces
into chapped grins
as they whisper
I made it through I made it through
nothing will get to me or you.

 I love you like that.

Our word is song,
lilt, flow.
Our word is comfort,
as in I knew you
before you were born,

before you were separate
from the great meld
of souls waiting to enter
their chosen bodies,

and someday,
when I need to go,
please don’t say
you lost me.

Know, instead,
that I live on,
around you
and beside you,

in your first
waking thought
as you chide the cats
for meowing before dawn,

and as you rotate the dishes
just the way
you know
they told me to do

and as you bless your gums
by flossing frequently,
and gratefully,

as you pull
all the way over,
leaving the phone
in the car
so you can stand and stretch
and take in the sunset.

That little rustle
you’ll barely hear
could be autumn leaves
swept along the dry ground
by the wind,

or it could be me
whispering
be present,
be present.

 

–Melinda Coppola

 

 

 

 

 

 

 

Dreamed some dreams

“A DREAM NOT INTERPRETED IS LIKE A LETTER NOT READ.”
— The Talmud

Last was a night of serial dreams, each building on the tangled mysteries of the one before. There was big sky, and journeying. There was an impossibly tiny stream and a dusty, broad road that earns the title of a trespass, as it forced a run alongside it. Yes, I said force. If that gives you pause, you may be unaware of the personality traits of waterways, that some welcome the paths that trace their every liquid curve, becoming roads. Some are flattered by such close attention, and others want no companion, no ardent fan to copy their every fork and dip and turn.

I know my boots kicked up dust along said trespassing wanderway, and judging by my sore soles on awakening, I walked miles and miles. One dream had me singing to the glinting snake of a river, cajoling and encouraging it to flow bigger, stronger, to make itself known against the green grasses that stretched away on either side.

The next dream, much more detailed, had me tiny as the river, a miniature woman in clothing that was elfin, or medieval, or some odd mixture of the two. The mini me was weaving blades of grass that were long and wide and heavy to my tiny hands. I remember the aches in the little dream hands mirrored the particular complaints that have settled in my hands in recent wide-awake life. I remember asking my dream self if perhaps this was the real life, and the other one—with its hours of daylight and driving and washing tea mugs— was, in fact, a dream. Ever industrious on some level, elfishly clothed me was weaving a wee canoe from the grasses. I think both dream me and awake me must’ve laughed at that. Miniscule woman, she of the teeny tiny shoes and the pointed hat, constructs transport from a weave and weft of grasses. She makes outsized plan to embark on an epic journey down dust speck river. As soon as she finishes her grass boat she hops in, tosses her plans into the breeze and allows herself to be flowed, because even little Who* sized people know Truth when they see it; we don’t push the river, we don’t freeze the wind.

There were other dreams surrounding these two. I know because I awoke with a mystery of dirt on one elbow, and some scent of lavender in my nose, and my first quick glance out the window caught a tendril of green, a curling thing, hanging from the just-dawn sky. Second glance showed no such thing, but that is The Way of it, after all. We only see what we are ready to take in, and even then it hangs around only as long as we Believe.

–Melinda Coppola

*Dr. Suess wrote a marvelous tale about Horton the Elephant and his startling realization that he was the only thing standing between the destruction of an entire colony of speck-sized people and the continuation of their peaceful way of life.  https://www.teachingchildrenphilosophy.org/BookModule/HortonHearsAWho

In praise of song

 

 

 

 

 

 

 

SONG STORIES

You open
your mouth
and out pours
a river
carrying the rhythms
of fluids—
blood and lymph,
tears, synovial.

It is current, and source,

keeper of memories
and the stories
of your ancestors,
and mine.

Song is the lilting thing
passed down
from breast to infant lips,
from old warrior
to young hunter,

and passed on
lover to loved,
cricket to cricket,
across the fields
and through forests.

It is the play of wind
between mountains,
the Earth’s drumroll
pre volcano.

Song is the ancient
chants of the native peoples,
sacred contract
between the land
and the beings She
once welcomed,
and now strains to support.

Song is the chasm,
the lightening, the divide
between keepers of light
and keepers of darkness,
and those being born,
and those who are dying.

There isn’t a breaking dawn
without the heartbeat of earth,
the symphony
of wings rubbing together,
of claws scampering
up and down the trunks
of trees whose leaves
make whistle

out of breeze.

There isn’t a dusk that settles
without the howl of coyote,
the barking of prairie dogs,
rattle of snakes,

and the sea
with her incessant breaking
and pulling back,
giving rhyme
to the arrivals
and departures
of tides, and storms,
and stones.

Song is the hum
of all life,
natural and now
created—the talking
screens and the bots,
the drones
and the buzzing wires
that link us
and divide us.

Space,
that ultimate infinity,
was once thought silent,

but now we know
it’s out there, too—
the Song, wild and
roiling in the
gravitational waves,

bouncing
between howling
planets
and whistling
gasses,
celebrating the spaces
between things.

 

-Melinda Coppola

 

 

Receiving the darkness

The word solstice was born from the Latin sol ( sun) and sistere ( to stand still). 

 

Solstice, winter

This darker interlude
could be a meditation,
a reckoning with the deceptive
nature of time.

The exacting practice
of being present

is to show up
for each round moment
as if it were everything.

This is what might save
me, or us—
the stilling to receive
each bundled particle of time,

and if we get really quiet,
and keep the flame behind
our closed lids
fixed on the darkness
before us,

we notice it is leaving
at the instant it arrives.

In truth
there is none such transition,
no arriving, no departure.

It is all a single stroke
of paint
on the mortarboard
of existence.

 

“ It’s all the same f—-ing day, man.” —Janis Joplin, sage disguised as an addict with a glorious set of vocal chords.

As a child, I noticed the shortened daylight only well after the length was returning to the days. Think late January in the northeast US, when the sun slips away almost a full hour later than it did when winter knocks proper on the door. Once I recognized this pattern in myself, it became metaphor for oh so many things.  If it’s mostly always getting lighter just when I notice the dark, then surely I can and will sing right through.

-Melinda Coppola

 

 

 

 

Morning is mostly a prayer

It’s been over a month since I last posted here. The reasons are many, but I guess it all whittles down to this: not blogging begets not blogging. I’m here now, though, offering this poem I wrote last month. It was a rainy November, indeed.

Undone

Honestly, it was the morning sky.

November sun, rare this year,
knocking at the edges of the earth,
sending up flares—
pink, yellow,
that soft peach tone
peculiar to pre-winter,

and my dawn-clear eyes
drew to the window
and beyond
and then I wasn’t really there
in the kitchen, not quite,

like some long bony hand
reached in and through glass,
pulled me through
and I slipped from carpet to deck
without shattering,

or maybe I did stumble to the door
and unlock, and step down,
and feel the leaf-lined decking
against my calloused soles.

No matter how,
I got there,
was there,
right there
with a grace that is
the invitation to stop.

And stare.

And occupy a moment,
allow my edges
to soften

and begin to expand
and take up space
so there is only moment,
not me
or sunrise
or window
or cold,

and that was my detangling,
my daily decision
to keep tender hold
to this life
as if it were orphan
and I, some great full breast,
was made to receive this
tiny bawling thing

delivered new
each break of morning,

and shape it with my hands,
and be all things nourishing,
and love it well, as it was made,
before releasing it
to its own
destined wind.

 

-Melinda Coppola

Arrivals

I’m posting this a day before my daughter’s 26th birthday. I’ve always felt, with certainty, that we were meant to incarnate this way, as mother and daughter, at this particular time in the life of this planet. I don’t need to know why, because I know it’s true.  Happy birthday, Bink. You are the best gift ever.

The Room Where Light Meets

Perhaps it began in a vast,
cloud filled room,
backlit with stars
and random flashes
of lightening,

or

the distilled bright
of a hundred
thousand dawns
that traveled,
speed-of-light style,
to their meeting place

to coalesce
perfectly and
right on time,
to kneel as pure light
before
the Beginner
of All That Is

where we
each received
our assignments,
and that

ethereal datebook,
days marked
in celestial
purple ink

to mark your conception,
and your birth,
full enspiritment,
yours as child,
mine as mother.

Perhaps there is no
random,
no haphazard,

perhaps we are all
always
right on time.

 

–Melinda Coppola

The Meaning of Compassion

The Kuan Yin

She keeps watch in the warm corner of my bedroom, her bearing almost more regal for the rivers of cracks and generous chips that mark her faded turquoise. Her right hand, the deliverer of action, folds into Gyan Mudra, the gesture of consciousness. Preparing to take her picture, I haul myself into the present moment as an honoring of what she is and what she represents.

This statue doesn’t move. Her eyes don’t shift to follow my movements. She is alive nonetheless, imbued with a love deep and rare, a love that springs from her most famed attribute, compassion.

My father gave this Goddess to my mother sometime in the mid seventies. I imagine he was making an effort to support her blooming love of Yoga and meditation. The statue moved out when my mother and I did, after the divorce, and took up residence in the corner of the small apartment. When my mum moved to a different building, Kuan Yin settled into another corner without complaint. This is where my daughter, Bink, first met her.

Bink, my mother’s first granddaughter, was delayed in nearly every aspect of development. She never crawled, and didn’t manage to pull herself up to standing until she was over two years old. During each visit to Grandma’s place, the turquoise Goddess of Compassion was witness to Bink’s ongoing challenges and triumphs. At three feet high and graced with numerous curves that made excellent grab bars, Kuan was a natural assistant during the pull-up -to-stand phase. As the relationship between my mother and my daughter deepened, so did the one between child and Goddess.

Part of the way autism presents in my daughter is her unrelenting adherence to self-made rules and rituals. Each time Bink visited Grandma’s place, she lurched or toddled or otherwise found her way to Kuan Yin in the corner. Bink developed a real attachment to Kuan Yin. She loved to touch the smooth blue-green skin and garments. Perhaps the coolness felt good to her frazzled nervous system. My mum photographed these encounters several times, inadvertently documenting Bink’s physical growth. Though I can’t find any of those old photos now, the memory of them is clear in my mind.

I loved it when my daughter spent time with her grandmother. It gave me a much needed break from a child who didn’t sleep through the night and often wore me out with her intense and unusual needs for…well, almost everything, except perhaps socialization. My mum grew to understand Bink in a way that few others did. She understood the bizarre food preferences, the need for space and the simultaneous obsessive-compulsive need to touch people’s noses. She celebrated my daughter’s triumphs and her quirks almost as much as I did ( and do). Kuan Yin was there to witness much of this.

During one of Bink’s Grandma visits, She grabbed Kuan Yin overzealously and the turquoise wonder toppled to the floor and broke into a multitude of pieces. The statuesque Goddess had the grace to land in a way that caused no injury to my daughter, but there was some devastation nonetheless. What would visits to Grandma be like without the reassuring presence of the dear clay lady in the corner? Luckily, we didn’t have to suffer long enough to find out!

Enter my brother S. He loved model cars and planes when he was a kid, and he still excelled in his ability to visualize solutions to problems and then manifest them. S glued back every little piece of Kuan Yin, and though she bears scars that tell this tale, she stood once again tall and strong in Grandma’s corner.

When my mum had to vacate her apartment to live in an assisted living facility, Kuan Yin came home with me. At twenty five years old, Bink no longer shows an attachment to her. That doesn’t diminish her power one bit in my eyes. The one who symbolizes my favorite attribute will always have a place in my corner, wherever that may be. She is a testament to a deep love that springs from a compassionate heart, the bond between my mother and my daughter.

–Melinda Coppola