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

 

 

It’s a Good Thing

The View from Here

Hello from my couch, where I’ve been planted for the majority of my waking hours for the past twenty five days. Who’s counting? I sure am. I’ve been following doctor’s orders post-surgery and elevating my right foot anytime I am sitting down. This is an improvement, since last week I was gifted with permission to stop elevating it while in bed. This can only be a good thing.

I left my most recent post-operative doctor visit with another gift, though I’m hesitant to label it as such. I said goodbye to the big awkward cast that had covered my right leg from just beneath my first two toes up to about an inch below the knee. In its place I am sporting ( Ha! Tongue so in cheek) a heavier and even more awkward black boot-like thing. It has noisy and strong Velcro strips that multitask beautifully, keeping the boot in place while playing catch-and-hold with large quantities of cat hair.

When I tell people I have a boot now, most assume I am doing what people do in boots: walking. Nope, I’m still diligently keeping any weight off that right foot, awaiting my next X-ray in fifteen days ( but hey, who’s counting!). I think that next picture will determine whether I’ve grown enough bone underneath the plate and screws to allow me to begin walking a bit in the boot with crutches. If things aren’t looking optimal, it could be two more weeks after that before the floor shall know the whole two-footed weight of me. When that time arrives, it will be a very, very good thing.

This has been such an interesting journey so far. I guessed there would be lots of rest, time to read and catch up on the House Hunters type shows I enjoy, and time to create art and poems and essays. I supposed it would be hard for my daughter who is so used to having me as her primary caregiver. Some of that has happened, but there have also been some interesting emotional day trips.

Chunks of memories have risen from the depths, some painful, others pleasant and enlightening, but all inviting me to re-examine the stories I’ve told myself about people and events from the past. As a Yogi and an introvert I’m no stranger to self-examination, but my hours of couch sitting invite a deeper dive. It seems my advancing years have allowed a kinder, broader perspective, and this, too, is a good thing.

Another side effect of this experience: I’m finding a deeper understanding of what it feels like to be dependent on others for basic self-care. I’m becoming acquainted with how isolating it can be to spend day after day indoors, at home, with no ability to get up and take myself somewhere.

I’m remembering all the friends and acquaintances and family who have had long recuperations from accidents and joint replacements and serious illnesses. And those who never did recuperate. I wonder about their experiences, and I see and feel the ways I could have been more loving, more present, more helpful. It’s not regret that fills me, but rather gratitude for the lessons and for the chance to do it differently in the future. This, then, is a good thing.

I’m not trying to bum you out, dear reader. This is not grim, not at all. I know I’m really lucky to be so temporarily disabled. I know I‘m among the privileged few world residents who have access to great medical care and procedures that can and will improve my quality of life. I’m not depressed, I’m not particularly bored, and I’m not spending much time at all feeling sorry for myself.

What’s clear to me: this forced period of limitation comes with gifts. The greatest of these may be a deepening compassion for others in similar and often worse circumstances. And this is a very good thing indeed.

-Melinda Coppola

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

 

 

Inner Child Remembers

young melinda coppola

Before The Tax

that adolescence imposes on body, mind, and spirit, probably in that order, there were hearty chunks of time that were some sort of unencumbered.

Inner Child remembers

discovering the fairies living well in tall flowers near the sandbox. How I loved to honor them, grabbing kid-sized chubby handfuls of sand and running through the tall stalks flinging the tiny granules. Oh, the sounds that Fairy Dust made! Songs in my ears and in my half-fairy heart. The magic-making kind.

The woods, the woods, the woods, acres of them, full of Brownies and Fairies and adventure. Long and free and wild days spent roaming the neighborhood, without fear or consequence.

On the first of May, I’d gather flowers from the garden and form them into weedy little bouquets. Carrying the wilting lovelies in my hands, I’d traipse ‘round to the neighbors. I’d stand on tiptoe to ring the doorbell, then place a bunch on the front steps, and dash out of sight.

One Christmas there was a little rubber duck, yellow. One of my older brothers had “wrapped” this for me by putting it into a huge box which he taped up. Made me wonder every minute until I got to open it. I loved that little duck so much, I’m quite sure it was my favorite gift that season.

Playing dress-up in the odd eaves above the stairs: I’d search the large steamer trunk housing big old velvet dresses, shapeless, and shawls. Layering myself in their heavy elegance, screwing rhinestones into my tender earlobes, shoving my small feet into pointy-toed high heels. I knew I was beautiful because nobody told me otherwise.

There was chocolate, sweet and smooth, melting in my hands, on my lips. There was the utter abandon of living well in my skin, loving having a body. No shame in me, yet. The eating for pleasure, until full, no thought of waist size or the “virtues” of making less of oneself.

Singing! Fancying myself an opera star, I’d belt out song after song, my 7 year old soprano notes echoing down the hall of that old childhood home.

After we moved from the big old white house with the gardens that housed fairies, I bonded with the small stream that ran through the new land. How I loved the deep mysterious smells of it, and the way it grew crayfish and little minnow things, and rotting leaves and mosses hugging stones.

There was the dreaming of horses, seeing myself riding them bareback and poised and strong.

Inner Child also remembers

watching poems write themselves, my hand dancing as the words flowed onto a notebook at my desk at the window.

There were the family trips to Cape Cod beaches in summer. My three siblings, my parents and I would cram into the wood-sided station wagon along with coolers and fishing poles, towels and beach toys. I rode in the way back, no such thing as seat belts then. At the end of the day, returning home, the tail lights of the other cars were Martian space ships. In fact, I was inevitably kidnapped by them, and they were forever whisking me away to an even better life.
—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

 

 

 

 

CONSORTIUM

Superguy is a very private sort. I am too, in my way. There are times, though, when things need to be said, out loud and in public.
In a time when stress and fear seem like national pastimes, love ought to be celebrated, and shared. Happy Anniversary, Superguy. You make my heart sing.

Consortium

Up before you,
I hear your shuffle
down the morning hall,
the clearing of your throat,

and my head turns
of it’s own accord, trained
by years of practice,

and I’m looking for your face
turned towards mine,
your ruffled silver hair
catching the morning sun,

and that slight nod of your chin,
the quiet grunt
which I know is your
Good morning,
I love you,
you mean the world to me.

You’ll head towards the kitchen,
seeking hot tea, which I
will have made for you,

and on the way you’ll
greet a cat
or two, or three,

and then there will be music:
your spoon in the green mug,
the refrigerator creaking open,
the muted pop of the soy milk carton
perhaps the crinkle of wax paper,
the bowl chiming a welcome
to the shredded wheat,

and I may or may not rise
from the couch or the Yoga mat
to hug you,

and I may or may not
give voice to that
which blooms inside my heart
when you enter the day in my sight,

that which, even now,
after years, after miles,
after challenges we couldn’t have foreseen,

sings the sweetest song,
Good morning,
I love you,
You mean the world to me.

 

-Melinda Coppola

 

 

WHO WILL SING? Autism, Adulthood, and Home

Bink and the big, wide sea

 

WHO WILL SING?

She gets older, this daughter of mine,
as do I, and the heavy question behind
each day, and woven now into each year:
what about when I’m gone?

She can’t live with you forever
I’m told, and I know this to be true.
Some of her peers, twenty-ish,
thirty-ish, middle aged,
have gone to group homes,
happily or not so,

and still the world spins,
and more questions arise,
for the options aren’t
pretty or plentiful,
and my imaginings vacillate
between dark and bleak.

Who will sing to her, mornings,
and guard the rituals
that define her boundaries?

There are the questions she asks
of songs, or objects, or days,
or other people, some of them dead,
some she has no contact with,
and I am to answer them
as if I am that person, that thing,
ten a week, typed up by Friday at 3pm.

There is the morning question or statement, often cryptic,
and she anxiously awaits my videotaped response,
though I am in the same room.

There is the crucial, long enough pause
between activities,
the deciphering of scrawled dreams,
decoding her language
in time to understand
she means This
and not That,

planning the next day’s snack,
next week’s lunch,
offering the hair,
two sided and girl shaped,

reminding and re-answering
a hundred times a day,
why him and not her,
why people say this,
do that,

what it means to advocate
in front of people,
in real time,
rather than to the air,
in a corner, hours later?

You say
she will adjust.
You say
she will deal,
must learn to cope,

and if I weren’t so damned appropriate
I’d ask you what it would be like
if someone took control of your every activity
because it’s easier that way,
(for them),
because they don’t understand
what you need,
because there are four or five others
living with you
who need things too,

what if the notes, the records,
the story of your life,
were left in a drawer somewhere,
unread, or read only once
by a supervisor
in an office somewhere,
and

what would it be like
if your clothes were too
rough against your skin,
and you didn’t have the words,
or, if you did,
they came out a month, a year later,
and so you had to wear these garments
that sandpapered your tender flesh

and then when you scratched your arms
til you bled,
what if you were given
a behavioral plan to curb
that thing you were doing to cope?

I’d ask you what it would be like
if the proverbial walls of your house ,
the very things you count on
to be there, day after day,
your schedule, your calendar,
your To-Do list,
were erased one day,
and the people you count on,
let’s call them staff,
changed every few months,
and didn’t read the notes about you,
or forgot what was in them,

and you were expected to be compliant,
do as you’re told,
and deal with it,
even if you didn’t like
the food you were given,
the activities you were driven to,
the staff who you relied on
for food, for a bath,
the others who shared the place
you are now supposed to call home?

Too attached, you say?
Am I melodramatic, or just well read?

You do the research,
ask around,
go check out the houses
you say she should live in,
be the fly on the wall,
and the report back to me, please.

I distract myself
with the gifts, the burdens,
the details of her life.
Tea too hot,
song too rough,,
packed lunch was uninteresting,
everything needs more salt.

In the land of Autism
the tiniest thing
can make or break a day,

and when it breaks—
the day, or my heart—
when it breaks
the healing is slow, uneven,
and the memory of every assault
on the nervous system,
hers or mine,
seems imprinted on the walls
of her cells, of this place
she calls her home,

but here we incorporate it into the décor,
write poems about it,
scratch an itch against the rough
patch in the plaster.

We make it all right.

All right then,
Tell me true—
Who will sing to her
When I’m gone,
Who will sing?

 

-Melinda Coppola

 

 

 

 

 

 

 

 

Welcome to Autismville

 

Shimmering minnow leaves

AUTISMVILLE

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

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

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

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

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

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

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

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

Melinda Coppola

 

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Dots and Dashes

Shirts must be pink, or occasionally “pool”…

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

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

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

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

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

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

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

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

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

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

 

-Melinda Coppola

 

 

 

 

 

 

7 AM ( more autism awareness) | Autism

7am

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

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

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

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

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

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

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

-Melinda Coppola