The Sings

Someone posed the question: What is it that brings you untethered delight, especially when nobody is watching? I’ve a bouquet of such things in my heart, but the biggest flower right now would have to be the sings. May I explain?

There are some tells. She needn’t speak. Autism tends to announce itself.

It’s her posture, head down and feet planted wide. Her hands, making gyrations large and small, flapping, playing air piano, reaching for the comfort of my hair.

We’ve had some really dark times of late. She struggles with tremendous anxiety and OCD.  I’m not writing about that today though. I want to write about the joy.

Sometimes, when she is especially happy, and seated in the car, when the color of the music transports her to a sunny place, the feet lift and both legs vibrate, bounce, shimmy.

The singing comes at home, in the tub, and outside; on the swings, in the car, and another favored venue—the market. She has no self-consciousness. Zero. Which makes it doubly delightful.

These are no small sings, not the little hums I am prone to, when alone. These are voluminous, gloried and mellifluous eruptions of words dancing to notes in lovely—I mean perfect—pitch.

When the dark clouds of anxiety lift and a little sun shines through, this is what I live for. These moments of great grace that feel like reprieve, taste like hope.

It’ s only in recent times, the past two years, that she’ll allow me to join in, and I can’t tell you what joy this brings! Mother and daughter, doing some pretty good justice to oldies and classics. Some may snicker, some may stare. Can’t tell how many because I simply don’t care.

Yesterday it was Que Sera, Sera at the ice cream stand. She started, and I joined in, and we belted out that song while the short line ahead of us pretended we weren’t, in fact, gifting them with a surprise serenade.

These moments of shared song are serious infusions of good energy for me. It doesn’t matter that Bink may not care if I join in. When my voice meets hers, they flow like some wild river of song-ish glee. This is my untamed salutation to God/Goddess/Universal Pulse , my dance-as-if-nobody-is-watching. This is my untouchable rapture.

How about you, dear reader? Where do you find great gladness, beyond concern of censure or reproach? I’d love to hear.

 

–Melinda Coppola

 

 

MORE AUTISM AWARENESS: RITUALS

AUTISM AWARENESS MONTH: DAY 18

Routines and rituals. Don’t we all have them? Under the best of circumstances, they can add order, meaning and beauty to our lives. For many people with autism, they go beyond that, offering comfort, safety, structure, and learning opportunities. Life with Bink is rich with these practices and observances, ranging from daily to weekly to monthly. Many of her practices are entirely her own, needing no interaction to complete. Some involve me and Super Guy. I enjoy some, tolerate others, but over time I’ve grown to appreciate their place in our offbeat life. 

WEEKDAYS

There is the morning wake up song, delivered at 7am sharp. Each day’s song is different, and though they are short little things, I make ‘em up on the spot. Recently, I heard her singing in the next room. It took me a few minutes to realize that she was singing the morning tunes I’d created through the years (and on the fly)! Insert shocked-face emoji here. They were probably in order, too—something she’d remember but I would not.

EVERY MORNING

First, there is the dream journal, a wide ruled notebook set aside for just this purpose. Bink’s scrawled entries might be the thought that just entered her head, or perhaps they are indeed fragments of dreams. That’s a mystery, as it probably ought to be. She scribbles, and I read it aloud. Super Guy is an acceptable stand-in if I’m not available.

A short time later (but within fifteen minutes of her rising), there is a question or comment she texts me. (Bink is actually better with this than she is with face-to-face conversation.) She likes my response to be delivered via brief iPhone video. Sometimes, she asks a question about something current, like why we are not going on a vacation. More often, it is about something from her deep past. Example: “Why when I moved towards Miss S_______, Miss L_______ said sit down in a clementine cheese boy voice?” That might’ve happened ten or twelve years ago, folks, and I wasn’t with her when it occurred. It certainly does keep my creativity sharp coming up with answers to these!

DURING EACH DAY

There are the four household chores she’ll complete with wildly varying degrees of attention and accuracy. She marks each off with a check on her chore chart, a hand drawn thing we devised to help her learn the value of contributing to the household and earning money. There’s a choice of ten chores. Like any of us, she prefers some to others. The vacuum chore is perhaps the most challenging. Though she doesn’t have to do a lot of it to earn a check, there are many steps to the process. There is lugging the heavy vac from the broom closet, delivering it to the area that needs vacuuming, plugging it in, turning it on, and bringing the sweeper to an upright position. Then there is the requisite focus involved. She needs to first remember the purpose of vacuuming, and then to notice whether the random bits of guinea pig litter are actually gone after she moves the machine back and forth over them. Vacuuming is not a favorite task.

Other chore choices are more to her liking, including making her bed (an imprecise effort to turn the clumps of covers into a smooth layer, covering as much of the bed as possible), getting the mail from the mailbox, and helping to shop for food. Emptying the dishwasher used to be something she seemed to like, though that has been changing. Our not-very-old dishwasher has mysteriously failed to clean the food off the dishes about every third or fourth cycle. She hasn’t seemed to notice if there is food caked on the plates and the utensils, and though we oversee what she does, a few food encrusted utensils and a plate or two made it into our cabinets. Now, that chore has the added responsibility of looking to make sure the dishes are actually clean, which means we need to define clean vs. dirty and reinforce this every time. That’s an interesting thing about autism; there can be an extreme scatter of skills and understanding. Bink can often spell a word backwards, but shampooing her hair is an elusive task. She can remember the day, week and month someone said something to her that upset her, but she needs to have a rule to enforce attention to the actual cleanliness of the clean dishes.

Back to the chores list: she is such a rule-bound sort, and this means she is pretty obsessive about completing the chore chart. If daylight is waning and she hasn’t earned those four checks, she’ll tell us, with a certain urgency in her voice, that there needs to be another chore. Since she requires assistance with some tasks and oversight with all of them, on a busy day it can sometimes feel like a chore for all of us to get those checks recorded on her chart!

EACH EVENING

There is the daily recap, again in her scrawl, in a notebook designated for this purpose. The things she writes are almost always limited to what she ate during the day, and one memorable activity or outing. If someone has said something to her that she didn’t like, or in a tone she felt was harsh , that will make it’s way into the narrative as well. She wants me (or Super Guy) to read this aloud to her, but with no questions, please.

Next, after teeth are brushed and she is ready to get into bed, she wants an oral recap of what she did that day. She also wants to hear about what will happen the next day. This must include a reassurance that she’ll have a treat. ( Think tasty little snack, preferably sweet). There will be somewhere between five and fifteen nose binks and hair feels during this little ritual, depending on her anxiety level. This whole process has proved difficult when a caregiver was with her at bedtime, because she couldn’t know what had happened that day or what the next day would hold, so Bink accepts this good night ritual only from me. When I am not available, she just goes straight to bed.

WEEKLY

Each Friday afternoon, Bink presents me with a list of ten questions that she wants me to answer. Here’s the catch: she wants them answered as if I was a different person (or thing!). On the list she specifies who or what I should channel when I answer.

This can be as straightforward as Questions for Ms. K________, answered by Mom the way she thinks Ms. K________ would answer them. It can be as obtuse as Questions for I Had a Little Overcoat sung by Raul Malo, answered by Mom the way she thinks I Had a Little Overcoat sung by Raul Malo would answer them. Yep, that’s a song, folks, and a specific version at that. And so I do my best to answer each question as I think that former teacher might answer them, or a particular version of a particular song might answer them, and I leave the completed questions and answers, typed up neatly, on the table the following Friday, so they’ll be there when she returns home from her day program. If she isn’t attending her program that Friday, she wants them to be on the table when she wakes up.

I have many, many lists of these answered questions in a file on my computer. Sometimes, there are multiple volumes of questions for the same person or thing. Forty two Volumes of questions for Miss E_______, for example, or twenty eight volumes of Questions for Old P_______________ Road basement.

Why do I do this? I’ve discovered, over the years, that she learns a great deal from these questions and answers. They help her begin to understand things from a different perspective, which is no small thing for someone with autism. Miss K_________, Miss E_______, and any number of others have perplexed her with their words and actions. They are no longer around for her to speak with, or if they are, they typically have neither the time nor the patience to answer these questions, especially when they are repetitive.

She doesn’t understand some of the things that happened in that old basement in that former house. Why were there toys stored down there? Why didn’t she play there more often? These things stay with her and can cause her a great deal of anxiety and discomfort. She wasn’t able to articulate most of her fears and curiosities when she was younger. Now she can express some of them, and her weekly inquiries are a tool that allows her to consider and absorb more about the world around her. Over time and after many, many repetitive questions and their answers, she is beginning to grasp concepts that you and I take utterly for granted. People are all different, for example. Sometimes, they get angry, or impatient, or sad. Songs can come in many versions and be sung by many different artists. Basements are places people store things.

Saturday night, there is the new chore chart we’ll put up on the refrigerator door, which is also when she receives her pay for completing the previous week’s duties.

There is the Sunday selection of a recipe that she will make with me or Super Guy. This is usually a stew or soup that she will take to her day program during the week for lunches. There is the grocery shopping to buy ingredients for it, and then the actual cooking.

MONTHLY

On the last day of each month, her whiteboard calendar gets wiped clean, so it can be recreated for the coming month. Here, we list all the things we can know about in advance. Her activities, days off, and appointments are written out in erasable colored markers. This is an important thing for Bink, who is calmed by knowing what she can look forward to. It’s also an opportunity to review coping strategies, for those scary things like medical and dental appointments.

On the first of each month, there is the CD that Bink will make with Super Guy. This consists of ten songs that she will have preselected, and he will burn them onto a blank CD from iTunes. She’ll make artwork for the cover, and give it a creative name like Bumble of the Genevieve or Yellow Sunseed Girl. In the last few years, she’s favored titling these CDs with a female name and a fruit. Apple Cara, for example, or Cherry Dianne. We have dozens and dozens of these gems. The girl loves her music, and she will be able to sing a CD from memory, in order. When she is swinging in the backyard, she’ll generally be out there just as long as it takes for her to belt out a whole CD, and not a minute more.

There are other rituals that aren’t quite as prescribed. Upon eyeing a yellow car when we are driving, she will half yell/half sing the word Duck! The color of the vehicle must be just the right shade, though—not every yellow looks like a duck. Another car ritual involves her spotting a license plate with triple or quadruple numbers on it. They must be in a row, not divided on the plate. Then she’ll proclaim what she has seen. “ Triple eights!”, or, “ Quadruple fives!”. Interestingly, she is not saying these things to engage the driver, does not particularly care whether anyone responds. She just needs to blurt out her findings, and seems quite pleased with this.

Sometimes, well-meaning people have been critical of my parenting or of the ways Super Guy and I sustain these oddish practices. Some have implied that we coddle her too much, or that we oughtn’t acquiesce to routines that may seem childish.

There is a saying that goes something like this: When you’ve met one person with autism, you’ve met one person with autism. There is no one-size-fits-all description of a person on the spectrum. That said, all my experiences and understanding point to something universal: the world is a really confusing, challenging place for those who are wired differently. Things that you and I just naturally absorbed along the way and take quite for granted can seem foreign and nonsensical for Bink and others like her. She learns differently, in her own time, and repetition is key.

The rules that go with rituals and routines form a safe space for Bink. Within the comfort of the boundaries they provide, and with gentle and patient responses to her different ways of questioning, she is able to understand more about this confusing world.

Of course, Super Guy and I won’t be here forever to help her through things. We are here now, though, and we have a weighty responsibility to do everything we can to prepare her for eventual life without us. Our rituals and routines, rather than holding her back, have been an important part of her successes. They can change over time, as she changes. Eventually, the rituals may well be things she alone participates in, to calm and ground her. I find no negative in holding on to a coping skill that harms none. The more she understands about the world around her and the people who populate it, the better her chances for a meaningful, safe and comfortable life. That’s what we want for her. She deserves nothing less.

–Melinda Coppola

 

From the First of November, 2017

Because sometimes it takes a whole month to write it down.

I type with hands that are redolent with garlic, onion, and freshly grated ginger. Today contains a chunk of time for cooking, with hearty stew for him, and Indian spinach rice, spicy, for her.

I walk and sit and rest and work with a heavy heart, weighted near equally with sadness over my cousin Philip’s sudden passing and with the aftermath of a terror attack in NYC. From both those stews, I pull the same saturated question: Is this the new normal, then? Will my peers, other cousins, friends, siblings, begin the dying times now? Is terror on the streets a new given in these not-so-united States?

This is not the self-portrait I want to create. This is the real and Wednesday me, though, as I slosh through to-dos with a heart that is stretched out from carrying big sacks of sad.

And yet, and yet. Perhaps my jiggly, overstretched atriums and ventricles have ever more room for loving, and accepting. Compassion for all beings, or as many as I can find my way towards/ forgiving and embracing and

that Voice, the one that doesn’t belong to me, the one I know I am a part of, soothes low and smooth with notes of

It will be OK. This, too, shall pass.

There is much work to be done here. Tikkun Olam, heal the world you got, baby, and it is good and honest work of heart to hands, heart to words

written
and spoken
and sung.

–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

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

 

 

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

 

 

 

 

 

 

 

 

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

I’m just the messenger

Lurleen Lumpkin, from The Simpsons

 

Sometimes, it’s a struggle to write. Lots of sometimes. There’s so much inside that wants to come out! So, picture this: I’m at my desk, all serious-like, trying to hone words into pictures, to allow the pen to move and accept what comes without judgement, and then to be brave and put it out there for you to (hopefully) read. I’m kind of hunched over in a very un-Yogic way. My brow is probably furrowed. And then this, …this stream of country western song lyrics comes pouring forth! I mean, I’ve always wanted to learn to play guitar, but this??  So, after my laughter died down a bit, I sat up straight, took a deep breath, and put it into this blog post. The Muse may have called the wrong number, but who am I to hang up the phone?

 

LAST NIGHT THE WIND

It was blowing and moaning and
(I imagine)
Singing and lowing and
( I believe)
weaving it’s way into and through
any old regrets I’ve had about you
What’s a grown woman to do?
Last night the wind
had me singing along, stringing along
my old Pollyanna-ly ways
Last night the wind
had me winging and winging
til my arms felt they’d burst
with me bringing and bringing
the news of some positive positive shift
the news of some mighty big changes.

When all’s said and done,
life rearranges and don’t we adapt or
we die? Sometimes
we adapt and that means something ends
as a means to an end, so
can’t we allow
The wind to go blowing and moaning
singing and lowing and
weaving it’s way into and into and through
Removing old regrets I once had about you
Goodbye old regrets about you

 

Melinda Coppola