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

 

Poetry, Autism, and Statistics, Oh My!

Hello!

I’m happy to share that  my poem, Autismville, won the Songs of Eretz Readers Choice Award Contest, and another of my poems, 7 AM, came in second!  If you’d like to see the official announcement, you can click HERE   If you voted in the contest, thank you, thank you!

This is an international contest, so it can’t be just my little ol’ cheering section of friends and family that helped this particular poem to win. Maybe the results reflect a growing interest in learning about autism, but I think it’s as likely that it mirrors the increasing numbers of people receiving the diagnosis.  More and more people know someone who is on the autism spectrum, and perhaps that means that lots of folks can relate to my poem. The latest National Health Center for Health Statistics data puts the autism stats at 1 in 36. Yep, that means that, of every 36 children alive today, there is one who fits somewhere on the autism spectrum. There are many arguments, many opinions about the true prevalence of autism in the US and worldwide, but there is no doubt that the numbers have risen dramatically in the last few decades. Bink was diagnosed in 1994, and my early, frantic research at that time placed autism at 1 in 10,000 people. I think the stats were actually more like 5 or 6 in 10,000 then, but my first information resources were library books and her first pediatrician, and neither of those sources was quite up to date.

Sometimes, people ask me why I think the prevalence rate has increased. My answer has been the same for the last decade or so: I believe it’s a combination of factors. This thing called autism is an umbrella term for  a collection of symptoms, and I believe there are multiple influencers. More children are being diagnosed, and at earlier ages, but that only accounts for a part of the increased numbers. I count vaccination schedules, genetics, environmental toxins, in utero exposure to certain maternal illnesses, medications administered to moms during pregnancy and/or birth, and lots more in varied combinations. Too, because I am a spiritual person and I believe we are all here to learn certain essential individual lessons and to share our unique gifts, I sense there is an element of fate involved. Note: in some corners, them’s fightin’ words!  I am not here to argue with your opinions or defend my beliefs, so if that’s your impulse, take it elsewhere, please and thank you.

Look, it is critical that research is funded and continues. I really, really hope science can at least find a way to ease or eliminate the most difficult manifestations of autism, like self-injurious behaviors, seizure disorders, inability to communicate, and utter lack of safety skills and self-protective impulses. But my beautiful daughter is here now, and that’s where the bulk of my attention and energy flow. As her mother, there is much I can do to make her life easier and better. As a writer, there is a little bit I can do about raising awareness and perhaps helping people understand the magnitude of the challenges Bink and so many others face. As founder and teacher of Yogabilities™, I can help people with autism and other disabilities in my community feel a little stronger, more balanced, and more flexible, and I can help them learn some basic and portable stress reduction techniques.

You’ve probably heard a few different quotes from some really interesting people like Voltaire, Confucius, and Shakespeare, suggesting that we not let perfect get in the way of progress.  Our allotted time is short , and doing nothing will change nothing. When Bink is struggling with something, we go over (and over, and over) her strategies. I’m trying to teach her that there is always something she can do to help herself.  Expanding on that, there is always something each of us can do to help others, including people with autism and their families. What seems like a little can feel like a lot.

It begins with acceptance, and a desire to understand a very different way of being. When people are curious about Bink, I don’t interpret it as rudeness. I’m glad to answer questions, or suggest ways they can engage with her.  It continues with respect for all people, including those that don’t talk, and those that flap their hands, and those that spin, and those that don’t make eye contact. That means the Neurologist in that top rated hospital could’ve handed me his written assessment, rather than reading aloud his list of her supposed deficits and offering a bleak prognosis, while she stood at my side, taking it in. That means the waitress in the restaurant could ask Bink what she wants to order instead of asking me what she’ll be having, as if she isn’t there. If Bink can’t answer, I’ll step in, but please, waitress, treat her like the adult she is.  That means the dad in the CVS could reassure his little girl that she can tell Bink her name when she asks, rather than averting his eyes and turning away, which teaches his daughter to do the same in the future.

When in doubt, assume competence, do unto others, and be kind. Little things, big impact.

Stepping off the soapbox now, and signing off.

-Melinda Coppola

 

 

 

 

 

 

 

 

 

 

 

Am I blue?

Hello,

I’m re-posting this poem I wrote last year about Autism Awareness Day, which is April 2. If you know someone with autism, today is a great day to acknowledge them.  Tomorrow works, too, or next week, or anytime. If they like deep pressure, give them a big, squeezy hug. If they don’t like to be touched, hug them with your eyes, with your thoughts. Hug their Mom or Dad, or better yet, offer to take their kid for a walk around the block, or an ice cream. It could be the most interesting half hour you’ve had in a long, long time.

 

Light it up Blue

Autism Awareness month is April,
World Autism Awareness Day, April 2
and, in case the day lacks color,
(as if any day with Autism in it could be dull),
the mysterious Namers-of-Days-and-months
have painted it a medium sort of blue.

I wonder who decided this;
and how it was chosen,
this perfectly ordinary second day,
and weighted with a long middle
moniker, like a fish
plucked out of the ocean,
tagged and thrown back
into what used to be
a perfectly ordinary fourth month.
And why a color? Why this one?
Does Autism look like blue
to outsiders?

Pondering this, I roll up my sleeves,
prep the tub for her,
the one who turned my life on its ear,
she who makes me laugh,
she who wears me out,

she who is a master of repetition,
she who defies reduction,
who is multi-colored, many-hued.

She who is unaware of your awareness,
who, if asked, would mutter “ Not interesting”,
she who needs help with a bath
but can take a thing
and spell it backwards,
report to the air/no one in particular
how many redundant vowels it contains,
and how her lunch reminds her
of Home on the Range.

She who hears songs in color,
who does not stay in her bed all night,
who is frightened of beads with holes,
she who knows if there’s a day to be aware of
it’s the fourth Friday in February,

which is called Ate Baby Kate, and that means bad,
and therefore must be worried about
many months in advance,
she who can sing whole CDs in order,
she who tells me thirty times a day
that I’m a girl ( in case I forget)

She who needs more than I have
who gives more than I need
who has more than you think,
who is more, so much more,
than you give her credit for.

And so, dear you-who-aren’t-aware,
please allow me to set the record straight.
Autism is multi-colored,
and awareness is every single day,
and no blue second day of any fourth month
will ever matter more
than your interest, your kindness, your respect,
your willingness to help us challenge
a world that would reduce anyone
to an assumption
or a label
in one color
on one day
within one month.

–Melinda Coppola

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

Many Singularities

 

 

 

 

 

 

Stephen Hawking,
having passed away
a full fifty one years
post predicted demise,

has left us trails,
breadcrumbs.
Not random,
because nothing is
haphazard as it seems.

Rather they are beaded,
strung together
on some
holographic ribbon
run through holes
patterned in multiverses
of black velvet,

and I’m already poeming
a proposal
that each patient,
upon a presumed life
shortening diagnosis,

be presented with
Stephen’s curriculum vitae
and
for good measure,
a collection of verse­­,
(the non-rhyming kind),

to further impeach
the arrogance
that moves mere mortals
to issue proclamations
of allotted time,

as if anyone could ensconce
one star from its constellation,
give it nothing to reflect
back or upon,
and foretell its singular light
in years.

Stephen, leaving breadcrumbs,
round clues to square
the life he left behind—
two wives, three children,
a dozen maps with two sided arrows
pointing to where
we came from, where
we might go,
a dummies guide to
how to flourish
despite, or with, or even because of,

also left a hundred doors
open to the curious among us,
which should mean everyone,

and he gave language
to the way an atheist sparks
a deeper appreciation of God.

It’s all in how you label it;
accident, plan,
gift, curse

it’s all up for grabs in a universe
where everything is sacred
or nothing is.

Melinda Coppola

What is the definition of a poet? I think we are interpreters of everyday sights and sounds and interactions, enabling more people to experience the sheer miracles that surround us and live within us. Stephen Hawking grasped things most could never comprehend, yet his named theories and observations captivated millions. He was a brilliant physicist, yet also a poet in his own way.

 

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.

Putting My Foot Down

Putting my Foot Down

I’m no stranger to disability. I’ve been Bink’s mom for 25 years. I know lots of individuals with varied special needs, some of them my Yogabilities™ students. I count a few of these folks and their families among my dearest friends. That said, I’ve been experiencing a temporary kind of disability as I continue to heal from foot surgery, and it has been so eye opening.

Forty nine days an invalid, and not before this post-surgical stretch of days and nights, chunks of hours so similar their names became blurred, Janu-monday and Satuesday, not once before this did I ever take notice of the way the word invalid is a devious thing, a means to invalidate, as if the millions of couch sitters and chair wheelers and bed warmers and leg elevating folks everywhere are less than whole. As if those whose full status as owners of walking, driving, autonomous bodies that move well through the world makes them more valuable or relevant.

Mine has not been a long sentence by most means. Having just recently received the invitation to commence a slow reunion of foot and floor, with crutches sprouting from my tender armpits, my limbs are stiff and recalcitrant, and yet they still remember full mobility.

There is the variant pain in my titanium-enforced right foot, the weakness in the calf, the instability of a body not used to normal biped motion. There is knee pain in the left leg that faithfully supported me throughout and in the right leg that was forced to rest. There is general hip malaise, and my neck constricts despite the Yogic stretches and rolls. Hands ache for mysterious reasons. Still, driving, or even emerging from my home on two sturdy, unaided legs, is surely on the horizon. Not close, but I can see it out there.

My first tentative pushes of sole against solid ground have been uncomfortable, to say the least. I’ll take the pain, though, and thank it as a bridge to full recovery. My calendar has been oddly blank these past few months, but February feels like hope. I know in a few years time these homebound winter months will be my mere memory. What will remain: an aversion to that word — invalid— and a far larger room in my consciousness for those that stay in for reasons not of their choosing. There are those that are recovering and those that never will, those for whom in is all there is.

Thank you, God/Goddess/Source of all, for continually offering me ways to expand my awareness. May I use the lessons to make differences, however small, in a few lives along the way.

–Melinda Coppola

 

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