Yogabilities™: Peace as a civil right

Doesn’t everyone deserve to be peaceful?

 

When I tell people that one of my occupations is teaching Yoga, there are some common responses.

Oh, I love Yoga! I take it at the gym/the cool studio in the upscale shopping center down the street
or
I can’t do Yoga, I’m not flexible enough.
                          or, perhaps
I read an article about how many NFL players do Yoga.

When I tell people that one of my specialties is teaching adapted Yoga classes for individuals with special needs, there’s also a common response, variably worded but along the lines of:

               Oh, that is so wonderful that you do that for them.

Translation: you must be a saint. You are so self-sacrificing. That must be so hard.

Insert audible sigh here. I know this territory. As mother of a young woman with special needs, I’ve heard things like it all her life.
1. I don’t know how you do it.
2.
You have the patience of a saint.
3.
God gives special children to special people.

Those are well meaning comments, I know. And sure, it can be really hard, and I do happen to have super-sized patience. I also believe that each incarnated soul is special, and God//Goddess/Universal Life Force has a way of putting the right souls together to help us learn and grow in the ways we most need to. In other words, everyone—parent and child, with or without extra needs— is special, so therefore # 3 applies universally.

When someone would roll out the old “How do you do it?” in the past, I was often too tired to answer, or too taken aback, or too caught up wondering how the hell this person knows what it is I actually do with my kid, given that they maybe just met me.

As my daughter and I grew older, I’d more frequently have the right snappy response, which is “ She’s a blessing.” Short, true, succinct. These days I’ve added on a few new handy lines, also true,” If this were your child you’d do anything you could for her, too. You’d rise to it. You probably have moved a few mountains for your own kids, right?”

So, back to the Yoga teaching. I’ve been teaching my adapted classes, which I call Yogabilities™, for about 11 years now. Like most things in life, I’ve learned as I went along. I’m not a saint, it isn’t a sacrifice, and Yoga is not some special privilege that only belongs to the, umm, …so-called typical folks.

In our times, everyone has stress, most people have anxiety, and I’ll drop and give you twenty push-ups right this minute if you can find someone in your daily life who does not contend with poor sleep patterns, inability to focus, lousy posture, stiffness, or difficulty with balance. Everyone can benefit from Yoga.

Further, people with special needs have more stress than many. Society often treats them like children all their lives, limiting access and choices and self-determination and robbing people of a very basic human right—dignity. So, if anyone is more amazing than anyone else, it is my Yogabilities™ students and their peers. They deal with challenges we can only half imagine, and many do it with humor, patience and grace.

I love working with these particular students because, cliché as it sounds, they teach me as much as I teach them. There is no pretense as we sit together and breathe, practice being present, and share strategies for coping with anxious and unpleasant feelings and situations. We all seem to accept each other rather unconditionally. My experience with my own daughter serves as a constant reminder to release any rigid agenda, meet each person as they are, and go with the flow. Moreover, these students and I seem to co-create an energetic space where each person can feel welcomed and safe. In that container, I’ve seen magic happen.

On those Yogabilities™ afternoons or evenings when I am particularly tired and would like to just stay home and catch up with laundry or check out with an HGTV home show, I cue up a mantra from my daily life and let it nudge me into place: I GET TO, as in

I get to be her mother
I get to go teach Yogabilities™.
I get to spend time with some of the most interesting people I know.

So yeah, I get to share my knowledge of Yoga with people with special needs. Some of them are saintly for putting up with the rest of us. I don’t know how they do it. God must have created the circumstances whereby they can teach me the stuff that really matters. It’s so wonderful that they do this for me.

–Melinda Coppola
www.SpectrumYoga.net

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

 

 

 

 

Of Names and Noses

Spirit Essence Portrait of Bink, done in watercolor by artist Melissa Harris

Of Names and Noses

I gave my daughter a blog name first and foremost to respect her privacy. Oh, I’ve told her that I write about her sometimes, because she is so awesome and amazing and interesting and people need to hear about things like that. I’ve asked her permission as well, and she has, in her way, given it. Her understanding of the implications of having her name “out there” along with some of the stories of our life…well, it’s limited. So I prefer to provide an extra little cushion between her life and my tellings about it, and thus the pseudonym.

Why Bink?

Some years ago on a pretty blue and green star in a galaxy near you, a child was born. No ordinary child, this! She came with the requisite parts, but her mind was put together ever so differently, woven in complicated abstract designs. There was no instruction manual.

This child was given a beautiful name, and she was loved very, very much. As she grew, it was pretty clear she was not a mainstream sort of child, and the collection of anxieties and oddities, interests and delays and symptoms she embodied came to be called autism. She grew some more, and some words came, but she was not able to tell the world what she felt and what she needed, at least not in the regular way.

Her anxieties were growing, too, and they were super-sized and showed up in myriad ways. One of those ways had a lot to do with touching people. Not your standard hug or shake-a- hand kind of touch, but rather little fingers ( hers) darting out to bop a baby on the head, or touch a nearby nose. That kind of touch became something like compulsion, and that need got bigger and stronger when she was anxious, and that in turn made her more anxious. So there was the urge to touch, and then the anxiety about the urge to touch, and that made the urge even bigger, and round and round it went. She passed through the bopping babies on the head phase, but the urge to touch noses never did fade.

The child’s Chief Interpreter and bodyguard ( that would be me) was always looking for ways to make lemonade of the bumper crop of lemons that grew up in and around the autism, and the anxiety, compulsions and fears. Somewhere along the way, the child and the Chief Interpreter began to assign sounds to certain touches. It was a collaborative effort, and one day the fingers touching noses elicited a “Bink!” from the child, and CI laughed and smiled and this became a good thing, a fun thing. It was also a teaching tool about whom to touch, and where, and when, and so the child began to touch noses of family members and caregivers with a definitive “Bink!”, and that was OK or even good.

The next learning was about permission, a challenging concept for a person who had little sense of others having their own preferences and feelings and thoughts. The child learned that strangers and other non-caregiving types did not make that bink sound, and in fact made scowly faces and sometimes got upset and had what she came to call a ‘dangerous” voice. She also learned when and where the binks were not OK. In the car, for example, not OK to touch the driver’s nose unless stopped at a red light. Super Guy, my husband and Bink’s stepdad, and I had the whos, whats, and whens covered.

And so, the unified gesture and sound that is a bink moved right into the child’s life and became a permanent part of the lexicon. Sometimes the touching noses came when the child was anxious. This happened especially when she was in school and with people whose nose did not make a bink sound. When she was with her Chief Interpreter, though, and other assorted family members and understanding types, the child began to seek out binks for reassurance.

There even evolved a nose-to-nose bink, whereby she would touch the tip of her nose to another understanding sort of person, and a bink would come. This happened most especially with her CI, yours truly, though she sometimes would approach a select few with a request, “ Nose to nose?” Her CI hastened to assure the chosen few that this was indeed an honor, and they’d best partake.

Next came a variation where her nose would meet CI’s cheek or vice versa, and thus a cheek bink was born. This bink is and was reserved for CI alone. There is also a specific sound that precedes a cheek bink. It sounds like an awwww one might coo at a baby human or sweet little animal that embodies cuteness.

When Super Guy and Chief Interpreter had a talk about a blog name for this child ( who is now 24), no one or two words instantly arose in their minds. As they considered, over days, this young woman’s utterly unique ways of being, her quirks and her rituals, the bink thing began to rise from the mist. It just seemed so right, especially because it has evolved into a happy, loving thing.

So there, in a nutshell, is the background of the bink. It’s grown more nuanced over time; it now sometimes paired with a need to touch CI’s hair. For the record, the hair should be symmetrical, an equal amount of the left and the right. This is known as “two sides.” and in fact the day cannot begin without this sweet ritual. But that, my friend, is a story for another time.

–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

 

 

Write her

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Bink at the beach, watercolor by Melinda

THE WHY NOT THEN

When my daughter (alias Bink) was younger, sometimes friends or family would say,” Why don’t you write about her?” I was dismissive, back then. So many other people had done that—written articles, poems, a book about their child with autism– and done it well. I just didn’t think I’d have anything new to add. And – more truth to tell – I doubted my ability to do her, and my life with her, justice with my words. And then there was the SLEEP thing. (More about that later.)

Recently, the mental and emotional fog that seems to go with raising a child who has BIG needs, has begun to lift. In the semi-clarity I now sometimes enjoy, it has dawned on me that nobody else has a Bink. I am the one who is most privy to her Binkness, and the world just shouldn’t be deprived of the richness of knowing more of her.

So I have written some poems about life with Bink, and an article or two. There will be blog posts, and, Spirit willing, a book someday. I figure I owe it to the world to make her known, autisms and all.

ABOUT THAT SLEEP THING:

In those early years, ( say, the first twelve or thirteen in Bink’s life) I was weary. That’s putting it politely. Fact is, I was often just barely making it through the days. Generally Bink would go to bed at 8pm, which she called “Owl” and fall asleep within an hour. Often, though, she would wake at midnight, or 1 or 2 am, and be up and wired for the rest of the night and the whole next day. I was flying solo by the time she was six, and it would be years before Superguy landed in our lives. I was exhausted so much of the time. I remember being so fatigued, driving Bink to her educational program and her various therapies and doctor’s appointments, that I’d  open the windows wide to get blasts of fresh air in my lungs and slap my cheeks, bite my tongue and lips to keep myself from falling asleep. I was also diagnosed with mono somewhere in all that haze, but I soldiered on because, well, I had to. Asking for help was never my strong suit. There were many daily rituals to go through with Bink, so that she would eat, and void, and be clean enough and have her clothes on correctly.  The level of energy required to care for her well and keep up with all the paperwork that went with all the appointments, doctors, therapists, school…it took a big chunk of my mental and emotional capacities to keep all that in line. Many days felt like a marathon. I am not writing this to complain per se, rather to explain that I was in no place to write about any of it, during those years.

THE WHY NOW

That was then. The waking in the wee hours, agitated and buzzing with anxiety, gradually faded away. Medications have helped. Along the way she also learned to tolerate being alone in her room for periods of time, or in the living room in front of a video, when she couldn’t sleep. She still gets up in the night, somewhere between two and six times per, but she usually just visits the bathroom and then goes back to her bed. And so, I am relatively rested. And in the ten or fifteen years that have elapsed, even more other people have written poems, articles and books about their child with autism, and done it really well. Still, I am the only one uniquely qualified to tell you about this parallel universe, life with Bink. I think it’s time.

More to come….

 

Melinda Coppola

 

AUTISMS

Challenge, sadness, worry, fatigue….I can write just as many pages about how those words requilt-entire2late to mothering a child with disabilities as any other “special needs parent”. I surely can. But here’s the truth: there are so many things I’ve come to like, or outright love, about this journey. I’m not diminishing the fear for the future, the worry about Bink’s vulnerability. They exist, ever-present, woven into the fabric of my life. That fabric, though, is a complex pattern of hundreds of different threads. Oh, those threads! There are shiny ones among them, and silky ones. There are pleasingly nubby ones and fuzzy ones and the ones that defy color categories and seem to call for names like sunset tea and Albanian mountain meadow and Cape Cod ocean in mid-June. Truly, my life is a quilt, made up of many fabrics. I suppose everyone’s life is like that. Mine is not the smooth, uniform whole cloth quilt I may have thought I wanted. It’s more like a big, sprawling, messy, crazy quilt with snags and holes and funny odors in places like old clothes that have been in the attic too long, unwashed. And you know what? The most interesting patches are the ones I call autisms. I’ll share a few here.

What color is this song?

Bink can hear colors in songs. It took me many years to figure this out, because communication as most people know it came along slowly. Fact is, it’s still coming along and always will be. The presence of this glorious synesthesia is something I discovered by piecing together a string of clues, over years. Piecework. It’s what we do here. My apparently more ‘normal” mind cannot make heads or tails of this color-in-songs thing. I can’t figure it out, but I can sure as hell enjoy it. And I do.

First of the month is CD Day

In our home there are many rituals. We all have those, I know, but ours are essential pieces of the pattern that keep Bink relatively calm and help her feel safe. The first of every month is Make the CD Day. Ten iTunes songs of her choosing, ordered in exactly the way she sees fit. My husband, Super Guy, helps her with this; I’m sort of technologically challenged. The CDs are planned months in advance, and they are given the most wonderful names: Potato Burla, Honey Margie, Barbara King Lamb Stew, Brownie Gaily. Rudimentary artwork decorates the labels. Bink remembers the contents of each CD. When she is swinging in the backyard, she’ll often belt out a whole CD, songs in exact order. It took me awhile to figure out that she wasn’t just randomly singing. My “normal” mind didn’t catch the pattern…you see the recurrent theme.

Alarm clock soprano

Each weekday morning, I am expected to awaken Bink at the appointed hour with a novel song. Appointed hour means only one minute leeway, and that’s the early side of on-the-dot. So, if the wake-up time is 7am, I can enter her room singing at either 6:59 or 7am. If I am one minute late, she bangs on the wall. Yes, you heard that right. She is often awake, you see, waiting for me to come in and, well, officially wake her. Oh, and I must have girl hair when I wake her. This means hair down, visible on the left and right sides of the head, for the uninitiated among you. Girl hair accompanies the nighttime ritual as well, but that’s an autism for another time.

 Now you may be asking yourself why we have not moved on to an actual alarm clock. Well, for starters, alarm clocks can be very loud and shrill. They also require a certain level of dexterity to manage the off function, the ability to get the message from brain to hand relatively quickly. A jarring start to the day can mean a difficult day all around. I am aware that there could be music programmed to awaken Bink. I am. She’s not interested in that, though, says she is not ready. Some years ago I began to really appreciate the fact that this dear girl loves to be awakened by my voice singing a soft, sweet song. There’s something rather magical here that makes this an autism I cherish. Weekend days are exempt, and vacation days too. On those days she sleeps as late as she wants. This can mean lying in bed looking at the clock waiting for it to land on, say, 8am. These days we are creeping a bit later, towards the daring hour of 8:30.

My crazy quilted life with Super Guy and Bink isn’t always pretty. There are lots of loose threads and some big snags and the afore-mentioned holes. It is sometimes unpresentable, and it can smell strange. It’s also wonderfully warm, and soft, and endlessly interesting. I wouldn’t trade places with anyone.

–Melinda Coppola