Little Things

It was, in my home, an ordinary weekend morning. I rose before him, he before her, the felines were fed. I made three different kinds of tea, two prepared with stevia and soymilk, one with honey.

It was the latter that sparked it. She who has such challenges, she who’s made such gains, she whom we encourage towards greater independence, (which is such a big word for a collection of rather little things), she rose from the table for more sweetness, and he, who loves her like a daughter, was making his own breakfast, standing right in front of the lazy susan, home to the nectars—clover and wildflower, and the raw, local blend that boosts immunity.

“Excuse me.” she said, and lest you think nothing of those words coming from that young woman, I tell you manners are a milestone in this autism infused home.

He stepped aside, she went for the good stuff, picked up an unopened jar when there was an open one there too. He, who can be less patient than I, told her to put it back and find the open jar instead. From across the kitchen, I saw the signs. Her face tightened. Her hunch grew hunchier. Her hands began to flap. “ I need a break!” she said. Such advocacy! And often, those words are enough. Girl gets her space, and life goes on.

This particular morning, he-who-loves-her-so felt the honey task was within her abilities. He was also maybe tired, a little cranky. And so he pushed back. “ Bink, take a deep breath. Look for the open honey and use that instead.”

It was too much. Her hand darted out, her fingernails clawed his forearm and she grasped the muscle, skin, and hair there. “ OWWWWW!” he yelped. “ That HURT me!”  Bink was off the rails. Superguy, who is usually calmer, wasn’t far behind her. I intervened with soothing tones and smoothed it, smoothed it, as I am prone to do.

To his credit, he settled well before she did. After an intermission, we had a meeting to rehash the events. “ It was too many instructions,” she said. “ But still….,” he replied. We talked about ways to avoid a situation like this in the future. Bink’s outbursts and aggressions have lessened dramatically over the years, so when they occur now we try to address them head on, after the storm. We meet, we identify triggers. We strategize and together we come up with rules that make sense to her. I am, generally, the one who remains even tempered and toned. I am her safe harbor, and also his. It’s a balancing I’ve grown proficient at finding and demonstrating.

It was what happened later that sparked something wild inside me.

Mid-morning, I was at the table in the dining area that is open to the kitchen. That table is a multi use surface for us. We eat there, and fold laundry there. Writing is done, art is made, bills are paid. I heard something unusual, and looked over to find Bink opening the lazy susan and turning it, finding the honey. She looked at all the jars, selected the open one, and put it on the counter. Then she picked it up, put it back in its place, and maneuvered the awkward folding door into the closed position.

“ Bink,” I asked, “what are you doing?” “I fixed it!” she said triumphantly.

She had, on her own, done a do-over. She recreated the scenario as best she could and practiced finding the open honey, taking it out, and then putting it away again!! This was, and is, a totally new thing. A small thing that was beautifully important and large in its meaning.

Did I praise her? You bet. In fact, I called Superguy in and explained what had occurred, and he was blown away as well.

I have a decorative painted sign that sits over one of my favorite framed art prints in my kitchen. It’s the little things, it says. There are tiny lovely potted plants painted on either side of the words, and the whole small rectangular piece is bordered in gold. It’s one of my favorite things to look at in my home.

It’s the little things, indeed.

–Melinda Coppola

The Sings

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

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

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

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

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

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

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

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

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

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

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

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

 

–Melinda Coppola

 

 

SHE and DOE

 

 

 

 

 

 

 

It was a few years ago that I found myself meandering in a quaint little town in western Massachusetts, about two hours east of home. I saw the sign, which read, simply, THRIFT. As a a fervent fan of space and simplicity, I practice de-cluttering my home and head regularly. I’m quite aware of not accumulating more things. Even so, I turned towards the door of the shop, reminding myself that it can be a very good thing to be free of an agenda.  Like many of you, wandering with an unhurried pace is a novelty in my daily life.

I was on a personal retreat for a few days, a very welcome respite from my 24/7 role of caregiver to Bink, my adult daughter with special needs. This big chunk of alone time was (and is) rare and precious in my life circumstances.

The shop was crammed full of everything I could imagine a thrift shop can hold; quilts and vases, books and jewelry, furniture and tools and clothing. Toys, rugs, artwork, decorative tchotchkes, lamps CDs, and vinyl records all vied for space on the haphazardly placed shelves and tables. I made several loops around the store, noticing new things each time. It was on my last lap that I spotted her, spotted them, half hidden behind some dirty old pots and a breadbox.

I was immediately drawn to the creamy ivory color, the smooth texture, and the way the woman was kneeling and offering her hands to the doe with the chipped ear. My heart flooded with peace, and I felt this sculpture to be the perfect symbol of the life I long to embody. The kneeling woman radiated serenity and compassion as she connected to the female deer, who is herself a symbol of gentleness and heart energy. I clearly had to adopt them, the she and the deer, no matter the cost.

I slowly moved the objects that kept this beautiful duo half hidden, and lifted them to my chest and into the light. To my surprise, the price on the bottom of the sculpture read $22.95 I bought it and wrapped it carefully in the blanket which stays in my car for Bink, who uses it for comfort in the passenger seat.

I returned home after my few days away, feeling replenished and calm despite a number of daily phone calls and text messages while I was away. Bink was quite anxious with me gone, despite the competent, loving care of Superguy, her rather amazing stepdad.

I carried the sculpture around the house, trying a few different locations, asking the newly adopted ones where they might feel most comfortable. They ended up on a shelf in my home office, where woman and doe continue to radiate a deep and perfect peace. Each time I look at them,  I am convinced they were sent to me as reminders from Source that all will be well, and I take a wild and hearty comfort there.

What about you, dear reader? Are there a few special items that hold great meaning for you? If you were moving and had to select just a few non essentials, what would they be? I welcome your response here in the comments section of this blog, or via email.

-Melinda Coppola

 

Mothering Outside the Lines

The Bus Stop Moms

From my morning window
I would watch
as they huddled casually,
tossed light conversation
back and forth,

an occasional
eye towards their kids
who played and laughed
together, finding sticks,
tracing shapes and letters
in the dirt.

After the big
yellow bus swallowed
their chattering children,
the moms would often stay
and talk a bit
in the easy way
women do
when they have things-in-common,

like an intact marriage,
and Pilates class,
and typically developing children.

I’d watch them wave to each other
as they’d part,
good-bye, see you later,
the bus stop moms turning
each towards her own
well manicured lawn,
highlighted hair shining in the sun.

I’d guess at market lists,
soccer schedules,
Girl Scouts tomorrow,
Johnny needs new sneakers,
such busy mommy thoughts
dancing in their heads.

From behind a fraying lace curtain
I’d imagine being one of them.
How carefree they must feel,
sending their kids off
without concern
for their obsessions,
compulsions, anxiety,
lack of toileting skills,
inability to communicate.

Without gnawing worry
that today might be the day
she bites the teacher again,
(who tells her to wait for the bathroom),

or rips at her clothes at recess,
(because it’s just too loud),
or has a meltdown during snack time,
(because the juice was the wrong color,
and nobody noticed signs
of the impending storm).

Almost two decades later,
the bus stop moms
are all grown up,
and so am I.

We still live in parallel universes,
they in their emptying nests, kids
off to college,
getting engaged,
traveling the world,

and I rarely compare
my apple to their oranges
these days,
having found the appetite
for what I have been served,

which is another way of saying
we can learn to love
what we’ve been given.

I’m busy slow dancing
a day, a week at a time,
having found my own
special mom circles,

and a different carefree
that doesn’t demand
grades, degrees, weddings,

having found a partner who
loves being her dad.

Different house,
the lawn still unkempt,
the curtain perpetually
in need of replacement,

these days I only peek out
to see the bunnies
so at home
in our untended landscape,
as am I,
as am I.

 

-Melinda Coppola

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

NOT ZEN, BUT NOW

Being present is easy when the blue sky moment is trimmed with green grass, when temperate breezes blow your hair back gently from your bright, clean face. You can hop off the worry train quickly in such minutes and hours. You can drop your baggage carelessly to the ground without so much as a glance towards where it lands, and feel your sneakered feet happy on some surface that may or may not be level. You can take the world and yourself exactly as it is, you are.

It’s jumping off in the dark that’s tricky, first opening your chest and reaching in deep for your courage and the faith that you’ll be welcomed by some surface, that you won’t fall and keep falling into some gaping chasm that opened in the earth while you were busy regretting and planning and being all sorts of things except grateful.

When the moment you are living in, the only one you have (which is all any of us have, ever), is a really shitty one by most measures, because you’re watching someone you love deeply (say, your child) suffer, and you can’t fix it, being present doesn’t feel like any gift you want to accept graciously, or at all.

We can know what we know, you and I, about the transient nature of pretty much everything; how all things pass and we are just temporary sculptures made of bits of stars and dust from dinosaur bones and the dreams of our ancestors. We can know all this and still want to do almost anything but be with the most painful parts of our existence.

And yet.

And yet, in time and over days colorful or washed out, through dark, thick nights and between joy sandwiched by crusty miseries, our capacity to sit with it all increases. It might be imperceptible for a long, long time, and then one day you mirror gaze and your jaw drops. There it is, your shiny heart, visible right through your tender skin, and it’s drumbeating and voluptuous, stretched out by all the exercise of crying and breathing and laughing and coping. It’s huge, in fact, and strong enough to hold you and everyone you care about, and even a few you don’t. Right about then you might remember that you’ve made it through absolutely everything so far, and even the thorniest ground doesn’t feel quite like a match for your deceptively tough lower body. Then you sit right there in that moment, and maybe you don’t feel tempted to pretend to be elsewhere at all.

And so.

And so you get up in the morning and pour a hot cup of something like tea. You drop in soy milk that turns the tannic liquid the color of hope. You wake your kid, even if she’s been up ten times in the night, and begin. You begin because it’s the only real choice, and maybe this day you stick around for more of the moments than you did the day before. You don’t zone out as much, or numb yourself as often. You don’t project, or regret, or try to edit what hasn’t even been written yet. You face what arises without censure, because you know and keep knowing you’re strong and wise and sober enough to sit or stand or slow dance with any given moment, be intimate with it, and then let it
let it
let it
go.

–Melinda Coppola

 

Today’s Truth

We all have challenges, right? Bink has rocky periods, when her anxiety rises and OCD rears its particularly ugly head. There is no easy or quick fix for these times, though we try many things. When she hurts, I do, too, with my whole heart.  I know things will change, because they always do, but today this how things look from my window.

 

 

 

 

 

Today’s Truth

I could write all sorts of words,
poems, songs, I could
take pictures and post
on Facebook, showing
the world
(or the twenty who’d read it )
my strongest doing fine face

and maybe share
that one of me in the Florida sun,
beach behind, smiling into the iphone
all shiny teeth and Aren’t I lucky
and
See how lovely it is here.

Truth is,
this morning
my daughter awoke
navigating a battlefield
familiar and grim.

Her foes—
anxiety, obsessions,
compulsions—
filling her head
with demands and
little terrors,

and I can only
pierce my skin,
pull my heart through the hole,
weave my love into a soft armor
and toss it around her shoulders,

and from the periphery,
shoot blind bullets
into the invisibles
she wrestles with,
use words
more powerful
than theirs,
hope to gain ground
through repetition.

I can only
turn my whole self
inside out,
reach into my center
and grab steaming handfuls
of my fortitude and
my perspective

and fling them towards her,
tell her this is medicine,
this is salvation.

 

–Melinda Coppola

 

 

 

Questions, Questions, Everywhere

 

When Bink was young, I didn’t know if she’d ever be able to ask questions. She had words at age three and four, five and six, but not in a conversational way. She didn’t point at things. Figuring out what she needed or wanted involved some combination of detective work, intuition, and guessing, the way it is with new babies. Could she be hungry? Well, it had been a while since her last snack. Did she need to be changed, or was she about to need that? ( She was very late to the toilet club compared to…well, mostly everyone). Did she want that toy she seemed to be eyeing, or could it be that her eyes were fixed instead on the fluttering leaves visible from the near window?

I got better at reading her actions and reactions. Her vocabulary began to grow. Still, no questions, no gesturing. I’d carry her to the various rooms in our home, finding assorted objects and pointing them out and saying their names over and over. When she got too heavy to carry, I’d toddle around with her and do the same thing. After awhile, I began to add the beginnings of a question. I’d point at something, try to get her eyes to follow my finger, and then say,” Wh, Wh, What. What is it? It’s a ….light! Wh, wh, what. What is the sound? It’s a …..doorbell! In front of the mirror it was Wh, Wh, Who. Who is it? It’s….Bink!”

Like many aspects of autism, the gaps in typical development were frustrating, and also fascinating. Bink’s inability to inquire about the world around her created an odd, passive dependency. I could never be sure what or how much she was taking in from anyone’s efforts to talk to her, or from overheard conversations, TV shows, or picture books. Weeks, months, even years later, I’d hear her repeat phrases or snippets of old conversation that told me she was absorbing more than most people thought she was. She didn’t observe others, but she did seem to be able to associate what people said with what they might do, sometimes. She and I developed an ability to communicate using pictures, gestures, and songs. I was her interpreter, filling in the gaps when kids and adults tried to communicate with her in the ways they knew. “ I think she wants….”, I’d say to them. “ Bink, Susie wants to sit close to you and play.”, I’d explain to her, while demonstrating this with my own body and a nearby toy.

I don’t remember exactly when she began to form the W’s. I know it took a long time. Years. The questions, when they came, were repetitive. Often, they still are. In fact, is not unusual for Bink to ask the same question during phases that last months, over many years, and multiple times a day. But I’m getting ahead of myself, as I often do.

Bink’s delivery gradually expanded from vocalizations directed at nobody in particular, to words sometimes uttered in the general direction of a person. Years later, there were more words, scrawled on a napkin that she’d leave on the table where, perhaps, someone might find it and be able to decipher it. Later still, there were typed lists. Many of her questions, now, involve why someone said a certain thing to her (or did something in her presence). It can be a challenge to explain why a certain teacher said a particular sentence on that second June Tuesday in 2003, or why her now deceased grandfather played a certain game with her when she was two years old that she didn’t like. The notion that he may not have realized she didn’t like the game is foreign to her. Doesn’t everyone just know what is happening in her head? Do others have different thoughts, feelings and preferences than she does? These concepts can be pretty advanced to those on the autism spectrum.

These days, Bink is a veritable fountain of questions, mostly about her past, and most of them are directed at me. “ I don’t know”, or “ I wasn’t there” is not a satisfying answer for her. I know she uses the answers as a learning tool, and so “ I wasn’t there, but I can guess” is my default intro to an answer that I hope will help her understand.

In a recent post, I shared some of the rituals and routines that punctuate life with Bink. Her Friday questions list is one of them. She types up a list of ten questions, titles it according to what is in her head, and I answer them as I think the named person or thing would answer them. It sounds convoluted when I try to explain, but this is part of the rhythm of our lives at home now.

If something is troubling her about why a certain instrument sound happened on a particular song on a specific CD, there may well be a list of ten questions for me to answer the way I think the song on the CD would answer them. Her Occupational Therapist, the one she loved and knew in 1997, used Jello animals during sessions. Bink has probably asked me about this two hundred times. Why did that OT use those animals and no other OT did? No iteration of my answers has satisfied her curiosity. There have been many lists of questions for Tina, the beloved OT who died long ago, typed out for me to answer them the way I think she would answer them. Maybe someday Bink will be able to accept an explanation that you or I would find eminently reasonable, and then she’ll close this particular file in her head. Until then, the questions will continue, asked and answered slightly differently.

I admit that the questions list is often a challenge for me, and something to fit in between all the other things that demand my attention. Yet, I remember myself as Bink’s  young mother,  twenty years ago. I imagine she and I, meeting today for tea. “ What do you mean, too many questions?,” she might sputter, eyes wide for emphasis. ” Do you know what I would give to have my little Bink ask a single one of them?”

I’d have to be humbled, and tell her she’s right. I used to just hope and pray for that which sometimes overwhelms me now. I know Bink’s questions are a banner of progress, and a reminder that she is always learning and growing.

Indeed, if my young mother-self were sitting with me now, I’d reach across the table and take her smooth hands in my older, weathered ones.  “ Keep the faith,” I’d whisper. “ She’s going to surprise you and delight you and make you very, very proud.”

–Melinda Coppola

 

 

 

MORE AUTISM AWARENESS: RITUALS

AUTISM AWARENESS MONTH: DAY 18

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

WEEKDAYS

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

EVERY MORNING

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

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

DURING EACH DAY

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

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

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

EACH EVENING

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

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

WEEKLY

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

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

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

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

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

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

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

MONTHLY

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

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

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

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

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

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

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

–Melinda Coppola

 

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