Dear Future Roadmaker

It’s still April, still Autism Awareness month. I’m thinking, as I so often do, of all the people I have met on my journey of raising a daughter with special needs.

There have been some wonderful teachers and some exceptional therapists (physical, occupational, speech and language, to name a few). There have been good hearted caregivers, van drivers, and medical professionals of all kinds that have made a huge difference in her life, and mine. There were, and are, folks from various agencies providing information about and access to services and assistance. There has been an unfortunate number of people from each of those categories that were not helpful, supportive or kind as well, and a few who brought great distress to Bink and to those who love her.

And then there are the other parents. I am a woman of many words, but I cannot adequately find the right ones to describe the love, support and comfort I have found in a tribe of others who are parenting an individual (or two) with special challenges. Most, but not all, are mothers. I’ve known some for over 20 years, and some less than a year. I am certain there will be many more I’ll come to know along the way. Some have children with multiple or well defined diagnoses. Some are parenting in the grey zone, struggling to find their children of all ages the help that might coax them to leave the house, or find a little job––a foothold in a world that has little patience for those who look “normal” but struggle to function on their own.

We lift each other up. We listen deeply, hearing the unsaid words beneath and between the audible ones. We try to check in on each other. Sometimes, it’s as simple as a ” How is _____ doing?” And a sigh or a quiet ” Just OK.” can speak volumes. If one of us learns of a new way to get help or a new service, program or activity, we want to make sure we share that information. We also understand how very possible it is to have no time or energy to communicate for many months at a time.

So many parents have helped me along the way. It’s important for me to try to do the same, especially for those with younger and/or more recently identified children. The following poem came from this place of deep appreciation and desire to be there for others who are walking the same road.

Dear Future Road Maker

I promise
this will pass.
Not the diagnosis, of course,
not your cellular memories
of initial shock, sadness, despair.

But this crisis,
the one that’s shredded
your equanimity,
kept you up some nights
for months,

the one that involves biting
and teachers,
veiled threats from
Those Who Decide
that Johnny may not be appropriate
for their coveted program,

the lauded school
that took
five meetings,
twelve months,
most of your energy
and an attorney
to finally welcome him
into their fold,

It will pass.

Toilet training:
Above all
don’t despair,
I can tell he’s going to get it,
nine is not too late
in our world.
Give it time.

Your current devastations;
Johnny rides the short bus
and there’ll be
no prom,
no diploma,
no college or
wedding or
career—
this will pass,
give it time,
these things will fade
into insignificance,

and besides
short bus=fewer students,
fewer stops,
less sensory overload,
and sometimes,
a kinder driver.

There are special proms,
if he is so inclined,
and nice certificates
of completion, now.

Take a breath,
safeguard your energy,
for you will need
every precious bit.

Choose your battles,
don’t try to war
in many places
at once,

and know this:
I am here,
and there are many of us,
veterans who faced
that forest,
stepped into the dark
growth and
trod the faint
paths left
by those who came before us,
and we are
making roads of them.

Don’t underestimate yourself
or your son.

You will both grow callouses,
you’ll know such triumphs,
and despairs you fear
will wreck you.

They will not.
You will emerge tougher,
a warrior advocate,
and we’ll be there,
all the road makers,
cheering,

and someday
that documented
list of deficits,
all his Johnny-can’ts
and Johnny-won’ts
will cease to faze you.

Mama lion,
future road maker,
mark my fervent words:

Your child,
son of your heart,
will surprise you
and amaze you
and make you
very,
very
proud.

–Melinda Coppola

April is…

I’m truly grateful to be here to greet another April. It’s such a hopeful month, with spring springing up everywhere. This month is also known as Autism Awareness Month. To those who love someone who lives with autism, every month, week, and day is a new chance to be aware. Insert my face with a pleasantly wry smile here.

Bink appears younger than her twenty six years. She could easily pass for sixteen. When we are out in the world doing the things we do, people will sometimes ask me,” How old is she?”  If I’m reasonably well rested and have my patience and understanding handy, (the extra stuff I save for strangers) I’ll smile and turn to Bink. “ Would you like to tell him/her how old you are?” If I’m running low on all that, I might just assuage their curiosity by telling them Bink’s age. Occasionally, if I’m really worn thin I’ll just pretend I didn’t hear the question. The alternative would be to answer their question with my own, and I might not smile at all when I say, ” Ummm, she’s right here. Why don’t you ask her?”  I rarely go there, because I truly believe that most people mean well. We’ve all just amassed a bunch of suppositions, based on our lived experience.

Sometimes, I imagine my daughter as one of a million special messengers from the great beyond. Perhaps her given mission is to offer a pause button, to give observers an opportunity to alter their assumptions. Her perceptions are so very different than what is considered mainstream. They have the power to shake interested minds in a gentle way, like a breeze shakes the leaves on the trees.

I offer my directive with the very best intention: Presume competence, people. Please.

 

—Melinda Coppola

To Sleep, Perchance to Wake and See the Stars

Bink does not sleep solidly through the night, ever. When she was younger it was especially challenging, because she’d wake up and need me to be right there with her, and she’d often be up for hours. Sometimes, after waking at 1 or 2 am, she’d stay up the rest of the night and all through the next day. I was really tired so much of the time. Even so, there was a certain kind of mystery and grace in every aspect of my mothering journey with Bink. Still is.

Years ago I wrote this poem about the night waking. I submitted it to a few journals, and received the customary rejections that are familiar to all writers, maybe especially poets. I decided to try once more to find this poem a home. And, yay! it has just been published in the online literary journal Vitamin ZZZ. The whole journal is quite beautiful and I hope you’ll check it out. You can see it by clicking here. 

The poem:

Night Graces

Each sleep cycle you wake happy, chirping
psalm-songs into the darkness, small
warm circles of air rising from your
curled body,

and you tumble toward my bed,
proclaim morning
whether it is midnight or three or,
more thankfully, five, and I

surface from moondreams
and embrace you,
little Talitha of Ursa Major,
Gemma of Corona Borealis,
insistent beacon,
nudging my fatigue aside so
this perfect view

of the stars,
those glorious jewels of the night,

reveals itself
as the gift it is

and I,
your student, humbly bring
a glass of water.

 

–Melinda Coppola

Arrivals

I’m posting this a day before my daughter’s 26th birthday. I’ve always felt, with certainty, that we were meant to incarnate this way, as mother and daughter, at this particular time in the life of this planet. I don’t need to know why, because I know it’s true.  Happy birthday, Bink. You are the best gift ever.

The Room Where Light Meets

Perhaps it began in a vast,
cloud filled room,
backlit with stars
and random flashes
of lightening,

or

the distilled bright
of a hundred
thousand dawns
that traveled,
speed-of-light style,
to their meeting place

to coalesce
perfectly and
right on time,
to kneel as pure light
before
the Beginner
of All That Is

where we
each received
our assignments,
and that

ethereal datebook,
days marked
in celestial
purple ink

to mark your conception,
and your birth,
full enspiritment,
yours as child,
mine as mother.

Perhaps there is no
random,
no haphazard,

perhaps we are all
always
right on time.

 

–Melinda Coppola

The Meaning of Compassion

The Kuan Yin

She keeps watch in the warm corner of my bedroom, her bearing almost more regal for the rivers of cracks and generous chips that mark her faded turquoise. Her right hand, the deliverer of action, folds into Gyan Mudra, the gesture of consciousness. Preparing to take her picture, I haul myself into the present moment as an honoring of what she is and what she represents.

This statue doesn’t move. Her eyes don’t shift to follow my movements. She is alive nonetheless, imbued with a love deep and rare, a love that springs from her most famed attribute, compassion.

My father gave this Goddess to my mother sometime in the mid seventies. I imagine he was making an effort to support her blooming love of Yoga and meditation. The statue moved out when my mother and I did, after the divorce, and took up residence in the corner of the small apartment. When my mum moved to a different building, Kuan Yin settled into another corner without complaint. This is where my daughter, Bink, first met her.

Bink, my mother’s first granddaughter, was delayed in nearly every aspect of development. She never crawled, and didn’t manage to pull herself up to standing until she was over two years old. During each visit to Grandma’s place, the turquoise Goddess of Compassion was witness to Bink’s ongoing challenges and triumphs. At three feet high and graced with numerous curves that made excellent grab bars, Kuan was a natural assistant during the pull-up -to-stand phase. As the relationship between my mother and my daughter deepened, so did the one between child and Goddess.

Part of the way autism presents in my daughter is her unrelenting adherence to self-made rules and rituals. Each time Bink visited Grandma’s place, she lurched or toddled or otherwise found her way to Kuan Yin in the corner. Bink developed a real attachment to Kuan Yin. She loved to touch the smooth blue-green skin and garments. Perhaps the coolness felt good to her frazzled nervous system. My mum photographed these encounters several times, inadvertently documenting Bink’s physical growth. Though I can’t find any of those old photos now, the memory of them is clear in my mind.

I loved it when my daughter spent time with her grandmother. It gave me a much needed break from a child who didn’t sleep through the night and often wore me out with her intense and unusual needs for…well, almost everything, except perhaps socialization. My mum grew to understand Bink in a way that few others did. She understood the bizarre food preferences, the need for space and the simultaneous obsessive-compulsive need to touch people’s noses. She celebrated my daughter’s triumphs and her quirks almost as much as I did ( and do). Kuan Yin was there to witness much of this.

During one of Bink’s Grandma visits, She grabbed Kuan Yin overzealously and the turquoise wonder toppled to the floor and broke into a multitude of pieces. The statuesque Goddess had the grace to land in a way that caused no injury to my daughter, but there was some devastation nonetheless. What would visits to Grandma be like without the reassuring presence of the dear clay lady in the corner? Luckily, we didn’t have to suffer long enough to find out!

Enter my brother S. He loved model cars and planes when he was a kid, and he still excelled in his ability to visualize solutions to problems and then manifest them. S glued back every little piece of Kuan Yin, and though she bears scars that tell this tale, she stood once again tall and strong in Grandma’s corner.

When my mum had to vacate her apartment to live in an assisted living facility, Kuan Yin came home with me. At twenty five years old, Bink no longer shows an attachment to her. That doesn’t diminish her power one bit in my eyes. The one who symbolizes my favorite attribute will always have a place in my corner, wherever that may be. She is a testament to a deep love that springs from a compassionate heart, the bond between my mother and my daughter.

–Melinda Coppola

 

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

 

 

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

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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