April is….

Autism Awareness Month: Day 1

 

Dear Reader,

You may have noticed that I write about life with my daughter, whose blog name is Bink, on a regular basis. There are poems, and stories, and sometimes pictures of her scribbles, and an occasional photo of her from the back, or from a distance.

I am respectful of her privacy, because she doesn’t grasp what it means to be known in the ways many of us have come to allow. Maybe that will change someday. Maybe she’ll want to be seen, and heard, by more people than those in her immediate physical sphere. She is a pretty cool human. Her creativity extends to occasional stories, quirky artwork, and even poems. She also sings beautifully, yet will not tolerate a chorus group. She tried that when she was younger. It was a perfect storm of sensory overload. Too much noise, too many instructions, waiting…all things that create extreme discomfort for her, which leads to anxiety, which brings more discomfort.

If she ever has the capacity to understand the possibilities of visual and auditory media, and if she chooses to share herself that way, I’ll help her navigate that safely. She’d delight so many people! For now, though, I’ll keep shielding her in the ways I can. I’ll also keep writing about her.

“I want to tell people about you,” I say to her,” because you are soooo interesting. I want people to know you, because you are wonderful and creative and unique in all the world.”

“ Yes,” she’ll respond matter of factly.

Here’s what I don’t say: The world is not kind to people with challenges like yours. People fear what they don’t understand, and when people are afraid, they can be cruel and sometimes dangerous. More people need to know about this thing called autism, so they will be more accepting and protective and so they’ll help create more opportunities for you and your peers to live healthy, happy lives. I worry about what will happen to you after Super Guy and I pass away. Your vulnerability scares me. I don’t know how to guarantee your safety for all of your days.

Truth is, I’ll never say those things to her. It wouldn’t be fair for me to expect her to understand. It wouldn’t be helpful.

I have great expectations of you, dear reader. I think you can understand. I think you can be a helpful part of the change that needs to happen. I think we can co-create a more inclusive, compassionate society where respect for all people will be the norm. I also think you deserve a chance to know my daughter, even if it’s just through my words. So, I’ll keep writing what’s in me to write, and perhaps you’ll keep reading my words and those of others, and maybe someday we won’t need an Autism Awareness Month.

 

–Melinda Coppola

Returning to Autismville

 

Good day!

Below, the second of three of my poems that are eligible for the Readers Choice Award over at Songs of Eretz. 

Here is the poem, along with the Editor’s words and poets notes from the journal:

Editor’s Note:  Nominees for the Songs of Eretz Readers Choice Award have been or will be published/reprinted in Songs of Eretz Poetry Review every weekday from February 19 to February 27.  Vote for your favorite in March by sending an email to Editor@SongsOfEretz.com.  The winner will be announced in April and receive a one hundred dollar honorarium.

Autismville

Melinda Coppola

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

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

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

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

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

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

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

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

Poet’s Notes:  My young adult daughter lives with my husband and me.  She also lives with Autism, Obsessive Compulsive Disorder and a great deal of anxiety. She presents as quite challenged to the uninitiated eye, and our lives are far from typical.

I often feel that we live in a parallel universe, moving at an entirely different pace while the world speeds past.  The children of friends and family meet their expected milestones and move on, and we amble and pause, spin in circles, and forge our own footpaths through the weedy brush. Our milestones are different, but if and when they come, we celebrate them well and take nothing for granted.

It’s not an easy life but it’s also not the grand tragedy that some people seem to believe it is. I wrote this poem to offer a different perspective to those who feel sorry for us and those who move in the faster, more conventional lanes.

About the Poet:  Melinda Coppola has been writing in some form for nearly five decades.  Her work has been published in several magazines, books, and periodicals including I Come from the World, Harpur Palate, Kaleidoscope, The Autism Perspective, Spirit First, Chicken Soup for the Soul, Welcome Home, and Celebrations.  She is an artist, yoga teacher, and mother to an amazing daughter with special needs and enjoys infusing the work of her heart with her voice as a poet.

Coppola nourishes her creative spirit with singing, early morning walks, collecting and making art with beach stones, cooking, spending quiet time with her husband and daughter, and communing with her cats.  This poem was first published on her personal blog twenty four may on June 8 2017.

 

7 AM, Redux

Dear Reader,

I’m so pleased to share my first of three finalist poems from the Songs of Eretz poetry contest. Though I didn’t win first place this year, each finalist poem is eligible for the Reader’s Choice Award.

Steve Wittenburg Gordon, the Editor of Songs of Eretz, published the poem and the following commentary on the site today:

Readers Choice Award Contest Poem: “7 a.m.” by Melinda Coppola

Editor’s Note:  Nominees for the Songs of Eretz Readers Choice Award have been or will be published/reprinted in Songs of Eretz Poetry Review every weekday from February 19 to February 27.  Vote for your favorite in March by sending an email to Editor@SongsOfEretz.com.  The winner will be announced in April and receive a one hundred dollar honorarium.

7 a.m.

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
two decades 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 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.

 

Poet’s Notes:  My young adult daughter lives with Autism, Obsessive Compulsive Disorder and a great deal of anxiety. She is a stranger to the ways most of us learn to survive and thrive in a confusing world. Her vulnerability is a big concern for me, yet she is finding her own ways to cope and to calm the sensory storms any given day can present.

E’s pink room, and her bed layered with soft blankets that echo the colors of the walls is a place of refuge for her. The rituals that we’ve created give her structure and comfort.

In this poem I tried to capture the tenderness of a morning moment before I sang her awake, when my eyes went to the monogrammed blanket on her bed. I imagined the giver joining us in spirit in that pink room, seeing that baby blanket. What would she understand from this scene?

About the Poet:  Melinda Coppola has been writing in some form for nearly five decades.  Her work has been published in several magazines, books, and periodicals including I Come from the World, Harpur Palate, Kaleidoscope, The Autism Perspective, Spirit First, Chicken Soup for the Soul, Welcome Home, and Celebrations.  She is an artist, yoga teacher, and mother to an amazing daughter with special needs and enjoys infusing the work of her heart with her voice as a poet.

Coppola nourishes her creative spirit with singing, early morning walks, collecting and making art with beach stones, cooking, spending quiet time with her husband and daughter, and communing with her cats.  This poem was first published on her personal blog twenty four may on April 20, 2017.

Inappropriate THIS

Inappropriate this

I love Caillou. For those who are unacquainted, this is a cartoon show about a little boy by this name, geared to toddlers. “Yes,and….” you might say. Well, my twenty-five year old daughter loves Caillou, too.

That statement might seem unusual in the world of “typicals,” those whose wiring is neurologically consistent with what is called normal. It is NOT unusual in in the world of Autism and other special needs. Many, many people with Autism and/or Intellectual Disability have a deep affinity for toys, music, TV shows, books that are geared to younger kids. While this may be common, it’s often discouraged.

My daughter, whom I call Bink when I write about her, is a young adult who lives with Autism as well as Obsessive-Compulsion and a good deal of anxiety. Bink has long loved kid’s music, and stuffed bunnies and ducks. Dolls didn’t really pique her interest until she was about twelve, but since then she is enamored with them, as long as they have pigtails. She is fiercely attached to her bed dollies (always two) and her car dollies (one in my husband, Super Guy’s car, one in mine). She also loves shows geared for toddlers, like Caillou, Peppa Pig, Dora the Explorer and Daniel Tiger’s Neighborhood. For those proclivities alone, she has probably heard the word inappropriate twenty times more than your typical 25 year old. Her behaviors have elicited many dozens more, but that is another chapter, for another time.

Stamp it out?

Where has all that aforementioned discouragement come from? Well, in Bink’s case it was teachers, Occupational Therapists, Physical Therapists, Speech Therapists. A few caregivers, and a significant family member. Sometimes, the disapproval even came from me, her mother, Chief Advocate and Interpreter.

Parenting a child with special needs is a process, a lifelong journey. I, like most of my special parent peers, started out overwhelmed, impressionable, uncertain and scared. It was easy, then, to fall into believing the “experts” and overriding my instincts. I was desperate to do anything possible to help my child. And all these authoritative Others made it clear; it is NOT OK for a 10, 16, or 20 year old to love toddler songs, rubber duckies, dollies and TV shows made for ages 2-4.

While I tried, at times, to curtail some of this love for all things toddlerish, I never totally embraced the notion that Bink shouldn’t have anything geared to much younger children.  She’s always had access to some of her very favorite toys and shows, though I did try to broaden her horizons, to expose her to books and activities and diversions that typical children her age tended to like. And she did and does enjoy some of these things. She likes Pavarotti, and Frank Sinatra, cookbooks and cooking shows. But she loves her comforts; dollies, rubber ducks, and, well, Caillou.

Truth is, many adults like toys and books and movies geared for children. I enjoy stuffed animals. Some are wild about Disney movies, or Matchbox cars, or model trains, Why should we hold our kids with special needs to a different standard? Why are we so hell-bent on trying to make them so different than who they really are, by making them more like us?

So, my gentle attempts to limit her time with child-like things didn’t last too long. The past five or eight years or so, in particular, I have encouraged Bink to be in charge of what she watches and plays with and listens to. She works hard to get by in a world that is fairly hostile to her kind. I want her to have as much of what she loves in her life as possible. But I digress. Let me tell you about the initial inspiration for this writing, which is…

Loving Caillou

Bink records things on her old-fashioned tape recorder. Things people have said to her, bits of her scrawled journal notes written in her own creative language. It’s not, then, unusual to hear her pouring forth streams of words from the living room where she watches TV. One day, though, I noticed something different. I heard the characters on TV say something, and she seemed to be saying something back to them. There were verbal volleys, two or three or even four sometimes, going back and forth. Over the next several days, I paid closer attention when I heard these exchanges, and also casually wandered into the living room to check this out. Caillou. Bink was talking back to him!

TV Caillou Mom: ” Come on, Caillou, it’s time for bed.”

Caillou: “ Oh, Mommy, I want to read my book!”

Bink: “ It’s OK, honey, you can read it tomorrow.”

Or

Caillou’s friend: ” Let’s climb this big tree!”

Caillou: “ OK”, as he begins to climb and then to lose his footing.

Bink: “Be careful, Caillou.”

Much of this is language lifted from the show. But it’s appropriate, it’s in context, and it is teaching Bink new words and the ways of voice inflection. And she loves these shows! A win-win, for sure.

The sports thing

Bink does not like group sports, or crowds, or lots of noise, and so she avoids them when she can. So when her day program let us know about an upcoming trip to Rhode Island to see the Pawsox play, a veritable trifecta of sensory sandpaper, she quickly opted out. No surprise, and this was fine with us.

Superguy and I walk a line these days, between encouraging her to try new things and respecting her right to choose. We talk to her about how things change, we change, and something we didn’t like in the past might feel quite different to her now. We also appreciate her slow growing self-awareness and ability to express herself, and honor that as much as possible. So I informed the staff at her program that she’d be sitting that trip out. A few weeks later, Bink spontaneously said ” I will try Pawsox.” !!!!

After I picked my lower jaw up off the floor, I praised Bink for trying something new. My assumption was that the staff at her program had been working to convince her to change her mind. In fact, they had not even mentioned this to her. Why the change, then? In our world this stuff just doesn’t happen much. I gently probed for clues, told Bink how great it was that she decided to be flexible, asked in a few different ways why she’d changed her mind. No answers came forth. I stopped wondering and decided to just enjoy the surprise.

Several days later…

Bink was sitting at the table eating. She’s serious about her food, folks, rarely wants to talk or listen when she is welcoming meals or snacks into her body. I was doing one of the hundred things I do in the kitchen, and I heard the words, addressed to no one in particular: “ I decided to try Pawsox because I saw it on Dora.” Insert! more ! exclamation! points! here!

Me:” You saw Dora playing baseball?”

Bink:” Yes.”

Me:” That’s great! Did it look like fun?”

Bink:” I didn’t know if play it or watch it.”

Me: “Oh. And you learned that you would be watching it, and that it could be fun to watch?”

Bink: ” Yes. There is popcorn and music.”

After telling her there may not be popcorn at Pawsox, and there may or may not be music at times, I decided to just let it be. And so did she. Thank you, Dora! Thank you, Caillou!

To those who want to tell me about how inappropriate it is to let my adult daughter watch her toddler shows, I have some advice. It’s pretty much the same words I’ll offer anyone who sees fit to tell me how my daughter ought to be, and how I ought to be parenting her: Inappropriate THIS!

–Melinda

 

 

Caregiver’s Lament

I’m on the couch, somewhere in between sitting and reclining. My right leg is extended out in front of me, clad in a cast to the knee and elevated on an ottoman with a large sofa cushion on top. My left foot is resting on a stool. This is a position I’ve spent most of my daylight hours in over the past ten days. At night it’s bed, elevating the right leg on that same big couch cushion, sometimes with another pillow on top. The only change in this scenario is that today my left knee is bolstered by an ace bandage and receiving regular ice packs in hopes of reducing some of the painful strain that has developed there. I guess it’s hard to be the only supporting leg, the one that enables me to slowly lift and lower and hop a bit to my next resting place–– bed, toilet, couch again.

I am ten days out from a planned surgery to alleviate long-term foot pain from the effects of an old injury. It was just over a year ago that I’d received a proper diagnosis: a ruptured ligament, probably from almost a decade ago. Since ligaments connect bones together (and provide a sort of shock absorption,) over time the bones in the top of my foot, which should be flat, moved. The surgeon described the odd arrangements as “ Bone tips coming out of the joints. A ski jump, and everything coming up from the joint looked like a volcano. The cartilage was almost non-existent, tattered”. All of this was exacerbated by time and lots of use. Probably over use.

It hurt. It hurt a lot and for a long time. Nothing helped much or for long. Still, I taught Yoga and Yogabilities™ and walked and ran up and down to the basement doing laundry and did everything I do as long as I could.

Why, after learning that there is a surgery available for cases like mine, with an 85% success rate…why did I wait? I am a caregiver to someone with special needs. Someone to whom I am the solid ground, the steady horizon, the predictable and understanding presence that enables all the pieces of her days and nights to work together.

I know what you might be thinking, especially if you don’t happen to be, say, a parent of someone with special needs. Hmm, Melinda sounds like she has delusions of great self-importance. Maybe she thinks the world can’t spin without her direct push.

And I get why you might think this, I really do. I’m not mad at you in the least. It’s not quite like that, though. I don’t think I can do most things better than others, or that I’m imbued with any gifts more amazing than yours. I am, however, the one who knows Bink best.

I know her intractable fear of beads with holes, and her pure delight in the deep male voices she calls Oreo. I know her requirements for space between things; rising and mint tea, her morning desire for a short video in response to a question. I know when I am to respond verbally, when in text, and when to not respond at all. I know what to look for after the clothes are on; a twisted bra strap, pants or a shirt on backwards.

I know how important the food talk is. What will supper be? What day will she eat that treat someone gave her yesterday? She is tired of the big pot of soup we made together just yesterday and says “ Don’t force me to eat it.” I know how to patiently answer a question for the fiftieth time, or the five hundredth, and when to push a bit more flexibility, and when that will mean disaster.

I know how the world alternately perceives her as less than, and also as someone who should be capable of more. I know how to keep her hydrated and clean and warm enough and I know the exact time of year her hands will chap because she doesn’t dry them thoroughly.

I know how to translate her idiosyncratic language for others and how to help her advocate for what she needs and when to step in and when to let things be. I know she really needs to get out somewhere every afternoon, and that this is no more rigid or unacceptable than your need to, say, have your morning coffee.

(Can you imagine, by the way, being entirely dependent on others to bring you that coffee, just the way you like it? Can you imagine being told that you shouldn’t need it every day, that you should be more flexible about this? That perhaps tomorrow you will not have your coffee at all because you should be able to get used to not having everything you want all the time? I digress, and for that I’m only slightly sorry.)

I know her by heart. She is my heart. And this forced semi-invalid state I’m in, this inability to directly help her with the tasks of daily living and with keeping the pantry stocked and cooking her what she wants and driving her to her program and ensuring her supply of soft pink shirts will not run out ….well, it’s really hard.

I have Superguy, who is going above and beyond. We have some help from caregivers. I am incredibly grateful for this and for the fact that this is a temporary thing. Not a day goes by that I don’t feel thankful for access to good healthcare, something most of the world’s people do not have. And I know Bink will be ok, and that she and Superguy and I will likely grow from this in ways I can’t imagine. I know this journey is rich with lessons.

It’s still damned hard.

 

–Melinda Coppola

 

 

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

 

 

 

 

 

 

 

 

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