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

Your Repose

I’m pleased to share this poem, which made its debut yesterday, in the Songs of Eretz Poetry Journal. I’ve included my poet’s notes, which that particular editor requires, as well as his comments. I’m grateful to add another poem to my list of published  work. I’m also thankful for the support of my dear readers!

 

Your Repose

The dream stage, when the eyes dance
beneath closed lids,
that which we know as REM,
is also named paradoxical sleep,
because the body rests while the mind
is quite awake.

I wonder if your soul
checks herself in mirrors
as you slumber, scrolls
Facebook, idly clicking Likes
with her ethereal fingers,
as if this tiny dreamland act,
the flick of a mouse,
could change a lifetime’s course.

You, who walk the waking world
following all the rules you know,
making up some you don’t,
doing everything in order,
trying to make sense of the chaos,

You who counts duplicates;
numbers on license plates,
yellow cars in a lot,
who checks and rechecks
the solid fences of her world:
I will have a treat,
You’re a girl,
You will have girl hair when we leave,
Two sides, cheek bink,
Mommy can you fix it

I want to think you are free in sleep,
different, unconstrained,
that anxiety and compulsion,
autism and obsessions
can’t follow you
when you fly to that misty realm.

I want to think
you can have this respite every night,
relief from all the voices, and fears,
the tensions, demands,
that there is no standard
of normal in dreamland,
or, if there is, you define it,
you abide
quite comfortably there.

–Melinda Coppola

Poets Notes:  I often wish I could be inside my developmentally disabled daughter’s brain. The mystery of her inner landscape intrigues me as much as the mystical realm of sleep and dreams. This poem was conceived from my loving curiosity about the nighttime journeys of her mind and soul.

 

Editor’s Note( From Songs of Eretz Poetry Review):  The gradual turn that begins in the third stanza is nicely done, perfectly setting up the reader for the narrative of the autistic girl in her dream world.  The heartfelt wish at the close of the poem takes my breath away.

 

Find a link to the original poetry journal posting, by clicking HERE

Returning to Autismville

 

Good day!

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

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

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

Autismville

Melinda Coppola

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

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

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

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

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

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

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

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

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

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

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

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

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

 

7 AM, Redux

Dear Reader,

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

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

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

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

7 a.m.

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

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

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

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

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

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

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

 

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

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

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

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

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

Inappropriate THIS

Inappropriate this

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

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

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

Stamp it out?

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

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

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

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

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

Loving Caillou

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

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

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

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

Or

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

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

Bink: “Be careful, Caillou.”

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

The sports thing

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

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

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

Several days later…

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

Me:” You saw Dora playing baseball?”

Bink:” Yes.”

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

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

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

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

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

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

–Melinda

 

 

Caregiver’s Lament

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

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

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

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

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

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

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

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

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

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

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

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

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

It’s still damned hard.

 

–Melinda Coppola

 

 

The Man in the Grocery Line

Certain special needs are invisible, or really hard to spot. This can include Autism, in some people. That isn’t Bink’s reality, though. Anyone of the neurotypical persuasion who takes more than a minute to observe my adult daughter will understand that something’s up. The way she carries herself, her frequent self-talk and singing, her hands reaching for my hair and announcing frequently, to nobody in particular, “ Brown girl. Mommy is a girl. Brown girl hair” these things are among the give-aways.

When Bink and I go out in public, people’s reactions to her difference tend to fall into three categories:
1. People are nice, they glance a few times, and then look away, feigning indifference, because staring is not what a well-mannered person does.
2. People are nice, with a curiosity that sometimes crinkles the corners of their lips upward and radiates from their eyes.
3. People are caught up in their own affairs and genuinely do not notice.

In the course of twenty five years, I can count on one hand the number of times that strangers have said or done something truly unkind in reaction to Bink’s other-ness. I attribute this to growing and widespread awareness of Autism and other special needs. I’m also a rather understanding sort. In the face of possibly mean or ignorant behavior, I prefer to assume the other person has a headache, has had a really bad day, or has to pee and has been holding it too long.

Now that you’ve got all that background, let me set the scene for what happened last Sunday. Bink and I went to the market, as we often do. We work on several things there. She looks for items from our list, puts them in the cart, and scans them at the self-checkout. I’m selective about how much she takes on in any given visit, depending on time constraints, and her mood, and mine.

We’d set out with a pretty small list that day, but we ended up with about forty things, because our four felines like their stinky food in individual little cans. We found everything successfully and we headed to one of six self-check registers. Things were going well: she was happy, I was happy, there were no lines. I prompted her through the initial steps. Choose English as the preferred Ms Register voice. Let’s type in our phone number for those valuable gas points. Then I asked her to scan, and set myself up at the end of the belt and prepared to bag.

Bink began the process, picking up each item and looking for the funny lines and numbers that make the lady inside the register talk back. One dollar and sixteen cents. Sixty four cents. Savings: ten cents. And so on. The voice is slow and deliberate, and Bink’s actions usually match the pace. If she can’t find the code, she just turns the item in all different directions until Miss Register responds. She was doing a bang-up job this particular day, adding in her own random comments. “Brown giiiirrl. Two sides?” The three of us –Ms. R, Bink, and bagging Mom, were in a nice slow sync. All was well in the world.

From my vantage point as the bagger I noticed that a man had gotten in line behind us. As Bink did her thing, he seemed more and more…ummm..interested. That’s a polite, assume-the-best word to describe his countenance and demeanor. The more items she scanned, the more man-in-line was interested. As we were getting towards the final third of our checkout experience, he began to sigh loudly and move his body in a subtle dance of impatience. A few more minutes, a few more scanned items later, man-in-line leaned way over to his left and ducked slightly around Bink, almost like she was a shopping cart or a magazine display rack. He seemed eager to catch my attention.

I admit, I almost declined to meet his eyes. It sure seemed like he was not a happy man-in-line, and we were almost finished, and things had gone so well. Bink had scanned more items than she’d ever done before, I’m pretty sure. We thrive on these little triumphs. Anyway, I did meet man’s gaze, and it was then he spoke. “Really??” he asked. I detected a really big pinch of sarcasm.

Really?

Did I mention that there were not big lines at the SIX self-checkout lanes? That means man-in-line had five other places he could have gone to ring himself out.

There were so many things I could have said. In retrospect, the possibilities were tantalizing. I was taken off guard, though, by this man’s words. I’m also, as I think I mentioned, a rather kind sort. Most of the time. To most people. So here’s what I did. Here’s what I said. I stood up a little taller, put a big, genuine smile on my face, and said, “ Yes, she’s doing a GREAT job, isn’t she? “

Man-in-line kind of screwed up his face a little. He paused, and then he muttered, to the floor,” Yeah. Yeah.” Bink completed her scanning, I put our bagged items in the cart, and we left. Two happy women, out the door and home.

Is it possible, dear reader, that man-in-line, who appeared very typical in every way, had one of those less visible special needs? Maybe he had a whopping headache. Maybe he didn’t win the lottery last night—again. Who knows, and we never really do know, do we?

I wonder if compassion can be taught, or if it is an innate thing that lives in some hearts and not others. I wonder what could change if we all went a little out of our way to notice each other with a bit more kindness, to scrape up a little more patience, and to let those words fall more readily out of our mouths,” Good job. You’re doing a really good job.”

–Melinda Coppola