What Do You Know?

What do we know for sure? I find myself wondering, lately, if we mostly hold the beliefs that suit our ease.

For some, self-contempt can provide a kind of familiarity which becomes belief. For others, there is ease in what’s left after all the anger—which is really a mutation of pain—gets bored and leaves, or burns away. Some find their peace in caring for others. Some may see truth in the days that offer little resistance to their status quo. Most of us may host a little of each of these.

Here’s a piece of what I know.

The dresser in my bedroom chafes at being called mine, or ours. It doesn’t relate to our words bureau, chest of drawers, or, for that matter, dresser. It prefers to be called proprietor. For this I hold deep respect, just as this proprietor holds my property.

I suspect the clothing and jewelry held therein does not necessarily enjoy being called those words we use for them. I’ve no way of knowing this, for I don’t have a conversational relationship with them. Well, except for the pyramid pendant that belonged to my mother.

Everything is sentient, but everything doesn’t always choose to be perceived that way. That is my experience, and therefore it is fact in my world. I feel no urge to lay that belief on you, though.

My daughter’s ways of being defy most norms. Manners are a great challenge for her. If anxiety and compulsion press her towards your nose, looking for the relief that a single light touch seems to bring, your negative reaction can send her spiraling into a small terror. She will remember you and that moment forever. Years from now she may be able to recite the day and date that you recoiled from her attempted touch. She will be repeating any comments you made, in a pretty good approximation of your volume and tone, into her tape recorder and into the air. She will scrawl about this in many a scribbly journal. She will not like you. Progress means she didn’t vomit when you said NO.

My daughter, a grown woman by any age standard, remains delightfully child-like in the ways she reacts to the world around her. She knows the colors of every song you could play for her. She struggles to understand that you don’t have such a skill. She sings when the urge strikes her, audience or no.

In the past few years, she is increasingly able to relate the experiences of her past. This can be…

Quite wonderful;
On 4/7/16 you started having gooey oyster. (Her words for my soft hair).

Enlightening:
The reason I cried on the bagnadahl grass girl Teletubby Wednesday is because the rice had cold texture. (No, I can’t tell you exactly what this means, but she clearly did not like the rice on that day!)

Horrifying:
“Mommy XYZ dragged me and pushed me and screamed at me.” XYZ was a teacher she had when she was under 10 years old.
“Mommy why XYZ said I hate you?” Daughter does not know how to lie, so I have no doubt this happened to her. “I didn’t have the words to tell you back then.” These particular deeply upsetting revelations led to my first two dozen attempts to introduce the word *abuse* into the teaching moments about how others should treat us.

I do not question what my daughter knows for sure, just as I wouldn’t second guess your right to name your own knowing. You don’t need to hear the proprietor speak in order to believe that I do. It’s the free sharing of our individual lived experiences—which includes deep listening—the alchemy of honesty and curiosity and respect, that seems to prod the important conversations. Rich fodder for growth.

–Melinda Coppola

Accepting Autism

Ten years ago, April was designated Autism Awareness month. April 2 is World Autism Awareness day. There has been a movement towards renaming both of these, replacing awareness with acceptance .

Robert Frost wrote,” Always fall in love with what you’re asked to accept. Take what is given, and make it over your way. My aim in life has always been to hold my own with whatever’s going. Not against: with.”

I don’t know many people who fight against the reality of autism. On the contrary, I know dozens of folks who have grasped their circumstances with both hands and shaped them into something meaningful, useful and beautiful. Affected individuals have found ways to educate non-autistic folk and improve the lives of others on the spectrum. Parents of children with the diagnosis have created organizations to assist with creative housing solutions, adapt recreational activities, and push legislation to protect our vulnerable loved ones from abuse and neglect.

I wrote the below poem four years ago. Today seems an appropriate time to share it once again.

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

Literally

I suppose all parents have those first moments of recognition; the sudden realization that the world has pushed itself inside your child’s innocence, the bittersweet rush of comprehension that s/he will never be quite the same again.

Having a child with disabilities creates a different trajectory. Timelines are unpredictable. Those milestones that mark the development of most children may never appear. They may show up in different forms, or make an appearance years later than what is considered typical.

In my 28 years of parenting a child who carries several heavy labels, autism chief among them, I’ve had the pleasure of knowing many individuals who also shoulder that diagnosis, and they are just that–individuals. Though there are common clues that might alert the uninitiated, there is no absolute list of characteristics that defines them all. One of the more common hallmarks, though, is what the world calls literal thinking.

There are so many ways that language can be bent to suit our needs for expression. Idioms, metaphors, hyperboles and analogies come easily to those of us who have natural fluencies, but these rather abstract concepts can be baffling for many folks on the autism spectrum.

Bink has a volunteer job at a wonderful store in a town nearby that sells books and toys. This was a giant leap for her. Though she adores colorful toys and fun activities geared towards a much younger crowd, the things that go along with having a job—taking and following direction, limiting breaks, staying with the task at hand, and persevering through non-preferred duties——are real hurdles for her. She has done well, though, gradually building up to a few hours there. Her one-on-one staff, S, is a patient, gentle woman who brings her own parenting experience along with her. Bink loves her and I frequently thank the stars above for the gift of her on our doorstep each Tuesday. The owner and staff at the store are also incredible. They consistently come up with a list of things for Bink to do, ensuring the variety she so craves.

One Tuesday at the store, Bink spotted a collection of small plastic packages with images of horses on the front. She used to have weekly horseback riding lessons, but that was snuffed out when Covid arrived, and we’ve no idea when this marvelous activity will return. She took note of the horses, and a few days later she mentioned the toy in her very typical way.

Bink: I wanted that thing.

Me: What thing?

B: The thing at the toy store.

Me: What was it?

B: The magical thing.

Me: You have money you have earned from your chores. Do you know if you have enough to buy the magical thing?

Bink: I don’t know.

Me: Well, when you go there next week, maybe S can help you figure out if you have enough money saved to buy it. We can put some of your money in your purse so you can pay for it.

Bink: I am not supposed to play with the toys.

Me: Well, you can look for it when you are finished with your work for the day, and buy it if you have enough money.

Bink: I am at work.

Me: OK, well maybe we can make a separate trip and look for the toy.

Bink: OK.

A few days passed. We had the welcome opportunity to have a caregiver come for a few hours on the weekend. Bink loves to go out places. Walks, stores, anywhere. Since Covid, the options are limited. The toy store does have a careful health protocol, and she is comfortable there, so we agreed that would be a good destination. I made sure she had some money in her purse, and off they went.

A few hours later, she returned with a small plastic package containing that magical thing. It was a little horse figurine made of plastic. I helped her open it, and she trundled into the next room with it. A short time later, I saw the empty wrapping in the trash. She’d put the little horse in my home office, which is where she deposits things that she wants to get rid of.

Me: You don’t like the horse?

B: It doesn’t work.

Me: Well, it’s just a little statue. It’s not meant to move or anything.

B: It doesn’t work.

Curious, I pulled the wrapping out of the trash. The words on the plastic wrapper were quite clear. “Blankety-blank brand horses come to life!” Aha! A major clue.

Me: Honey, did you think the horse would move?

B: I wanted to see it come alive.

The words that came to mind immediately? Deceptive advertising! Those words slipped out against my better judgement, so I tried to explain the concept, but my sentences twirled off into little question marks in the air around my daughter’s ears. So I did what I often do. I grabbed one of my handy responses, the kind that often feel like a feeble excuse for the shortcomings of the mainstream majority:

Things don’t always make sense. People are confusing.

Sometimes it feels like hefty chunks of days are spent struggling to explain to my clear-eyed girl that the world is full of people who don’t say what they mean and often don’t mean what they say. That sometimes it is considered OK to say and write things that aren’t true, especially if it makes people feel better or makes them want to buy something. That many things we’ve come to accept as perfectly fine, aren’t fine at all. When I view events and people from Bink’s perspective, which I often do, the myriad contradictions and unnecessary noise seem quite nonsensical. My head starts to feel like a spinning top, and I want to crawl deep inside myself where it is much quieter, and stay there a long while. Literally.

Notes from a Parallel Universe

I’ve written a fair amount about life with my adult child. As I plod ever so slowly towards creating a book about the journey, it occurs to me that the pace at which I’m working on that is in sync with the overall pace and rhythm of our life together. Bink will turn 28 this weekend. I’m not one to fixate on the differences between her development and that of a “typical” young adult, but the anniversary of her birth seems to stir things up for me. From that churn this poem arose.

The View from Here

You say
you just caught glimpses
of your child
as he sped past toddlerhood,
towards those labels
that mean everything
and nothing: child, tween,
teen, young adult.

Glimpses, you say,
as if it all tornadoed past you
while I stood stupefied,
hands in pockets,
by the side of some dusty cow path,
a perpetual look of dull
surprise on my unremarkable face.

Truth is,
over here our lives
are nothing like that.

We have plodded along
like turtles in the too-hot sun,
she and I,

pausing every few feet
to rest, to allow her
a few attempts at integrating
the latest sensory assault,

which could have been a wind
shaking the branches too fast,
or the distant sound
of a jake brake on a downhill semi
from a highway half a mile away.

Her needs are special,
which means our shimmy
is your slow dance,
our milestones
seem like simple addition
to your kid’s calculus.

I’m used to it,
adept at appreciating
the kinds of beauty
that decorate this life
that chose me, and her.

It’s not the pace of it all
that leaves me sweaty
and gasping for breath.

It’s my head spinning
as your children date
and learn to drive,
go to college,
get married,
have babies,
buy a house,

flying so far from your nest
you can’t squint enough
to make out the tiny dot
their bodies make
as they soar onward,
commanding the skies.

–Melinda Coppola

Little Big Thing

“Stay in awe of life. The little things are the big things. “ ― Richie Norton

“I’m cold.” Bink had just gotten up, a good hour later than she used to get up on any given pre-Covid Monday.

My eyes scanned her body, noting the hybrid pajamas I’d hastily grabbed for her to put on after her bath the evening before. The top, a pale pink waffle weave that had seen better days, was from a winter set. The sleeves had been cut shorter so they wouldn’t get wet when she washed her hands. She was sporting knee length summer-ish bottoms, made of a lighter weight fabric in a brighter shade of pink. They, too, were once part of a matched ensemble. Sets of things don’t stay together for long in our house. Her feet were bare.

“Hmmm,” I said. “You could put on a sweatshirt, and maybe some socks.”

Individuals with autism can have great difficulty with body awareness, which includes processing sensations and emotions. It’s only in the past few years that Bink has been able to identify a recent feeling or experience, and relay it to me within a few moments or even a few days. This happens sporadically, and I don’t take it for granted. Someday she won’t have me to instinctively understand her and help interpret her actions for a world that can’t. Though she will never live alone, and will always need help, any gains she can make in the self-care department will contribute to her comfort.

She trundled off towards her room, and a few minutes later I heard her addressing me as if I was right there with her. I sighed, feeling the familiar words rising in my throat. You need to come to where I am if you want me to hear you. I would have had to yell them down the hall, though, so I stuffed them back down into the room inside of me where I store frequently used sentences and expressions.

When I entered her bedroom, which is pink on pink and accented with more pink, she was standing in front of the closet looking in. “Mommy I don’t see the sweatshirt.” I instantly understood that she was looking for a hooded, full- zip sweatshirt. After all, that’s the kind we’d both been wearing recently on our walks outside. Let’s wear sweatshirts, I’ve been saying, as much to myself as to Bink or Superguy, as we get ready for our strolls and our hikes.

I pointed to one of her many pink crewneck sweatshirts that she’s been wearing all winter and most of this cool spring. “These are also sweatshirts,” I said, knowing she knew this, too, in some currently inaccessible part of her brain.

We moved through our morning rituals, which go something like this:

Bink texts me a question. A typical question might be Why did ______________ (insert the name of a teacher she had back in, oh, 2001) say such-and such (she’ll repeat the words that were said to her, verbatim) in a block voice on a tears boy Friday? I create my best guess answer for that day and video it back to her. If she likes my answer, my tone of voice, or the image that goes along with the video, she’ll save it and watch it over and over. The questions can be quite repetitive, and my answers may be as well. When this is addressed, she’ll say, “I’m just trying to understand it.”

Next, she texts me a short statement, something like Mommy has pinkalicious hair. She’ll await my brief, verbal response—Yes I do! Or thank you.

She scrawls in her Dream Journal after that, and asks me to read it aloud. These entries might be just a short sentence or two, or they might be a few pages long. At times, they read like recalled dreams might, with odd events like swimming in dream halls or being told she must have a bowl of beads without holes for breakfast. More often, they seem to be just thoughts, usually of the song reference type that frequent her brain in awake hours. “The man sounded like Al Simmons and John Langstaff on Johnny’s Fiddle.”

Welcome to the magical mind of my daughter.

On this particular Monday, we’d gone through our morning triad. Typically (pre-Covid) she’d begin obsessing about some detail of her upcoming day or week that she was worried about, but in these long weeks of Shutdown when all her typical activities are cancelled, she mostly fixates on The Plan. Lunch, treat, where we will walk or hike, and dinner options. Instead, she said,” I was cold in the night.”

Fabulous. Another example of her blossoming ability to identify an experience she has and convey it in a way that others can understand, in a matter of hours or days as opposed to years! I took a good long moment to savor this, then turned to her and asked, ever so gently, “Hmmm. What can we do when we feel cold?”

Bink can tell you what day of the week your birthday will fall on in 2024. She can spot triplicate numbers on the license plate of a car that speeds by so fast I barely notice the color. She can recall the exact words and tone of voice used by anyone who’s ever scolded her, and can likely remember the day, month and year it happened, too.

The integration of other concepts that seem so basic to many of us, like knowing when to don and doff another layer of clothing or a second blanket, is much more challenging for her. The first step—identifying the discomfort— seems to be happening more often for Bink. Little victories like these seem even sweeter during this period of shutdown, with more time to notice them.

Brown Girl Hair Has Left the Building

Bink loves girl hair. For the uninitiated, this translates to long straight hair hanging down, on a female of any age. Preferably, the hair should be visible equally on the right and left sides of her head.

I’ve had long brown hair for 25 of my daughter’s 27 years. At one point, it grazed the small of my back. Bink loves reaching for a lock of my hair, especially when she gets up in the morning, when we part and reconnect during the day, when she is feeling anxious, and before she goes to sleep. Brown Girl Hair has even become my sometime moniker. Superguy has been known to refer to me as BGH (for short) in his texted or emailed communications with Bink, or when he addresses me in a birthday card.

In addition to being Brown Girl Hair, I’ve also been identified as Gooey Oyster. That means soft, smooth, silky hair in Bink’s world. Through no fault of mine, she loves raw oysters. And, to her sensibilities they are smooth and silky soft, like my hair. So she’s used the Gooey Oyster identifier along with Brown Girl Hair for some time.

Bink would prefer my hair down all the time, but my life is rather active. When I am cooking, cleaning, exercising, teaching (or doing) Yoga, caring for the cats and many of my other miscellaneous occupations, it is much easier and more practical to tuck it all up into a quick bun. This has led Bink to write, “You are not bread.” on napkins and leave them around the house for me to see, or to record into her tape player, ”Mom should not have a bun because she is not bread.”

We have been known to negotiate. “Hair down?” she’ll ask. “I’m cooking,” I’ll respond, perhaps for the fifth time. “Hair down at 4:40?” she’ll say, with an edge of faint hysteria in her voice. “I’ll put my hair down at 5 o’clock.” And so on.

I’ve loved hosting long hair at many points in my life, and other times I’ve tolerated it. Snarls happen easily, and the high-quality conditioner and combing in the shower precedes the two hour drying process. No hair dryer, except for the bangs. I’ve no time or patience for the tedium of all that hand-held noise, and it’s not good for the hair, either. There’s also the impracticality of having my long—albeit soft and shiny, gooey oysteresque—locks hang down and hinder my free vision or motion. Worse yet, it can inadvertently get dipped into a pool of mystery goo on a counter, or catch some errant cat food as I bend to clean up after our messy felines. Sometimes, I’ve found myself feeling tired of the process required to maintain all that girl hair.

I’ve broached the topic of Cutting It many times with Bink, who has reacted with a variety of expressions of displeasure, anxiety, and horror. When asked what she loves about her Mom, Bink will inevitably say, ”Her brown girl hair/gooey oyster.” I’ve often joked that, if I cut my hair short, my daughter would be in the market for a new mom.

She grows older, though, as do I. Signs of flexibility and maturity have been showing themselves in the past few years, particularly as Superguy and I push the envelope more. We are, after all, in the service of helping her become more independent, given that there will come a day when she will have to live without us. (Deep, heavy sigh inserted here. Topic of another blog post, or another fifty of them.)

I’ll be fifty-nine in a few months. I’m keen on decluttering my calendar and my environment. I have never been more aware of the need to make room for the things that really matter, like good health, and quality time with beings I love, and for the book that needs to gestate inside me. A new yen to Cut It Off began to make itself known in the past month or so.

Cue new consult with Superguy and Bink. “No,” she said. “Not above the shoulders,” said he. I reminded them gently that, despite evidence to the contrary, my hair belongs to me. And I was ready to cut it.

“It won’t be super short,” I assure them. “But I am getting it cut. I will let you know when it is going to happen, and everything will be OK.” And, you know what? It was.

A few days later, just before Christmas, I walked into a hair salon I’d never been to and plopped down my 25% off coupon. I told the lovely lady wielding the scary looking scissors that I was ready for a change. “But, not too short. And, I’m not a high maintenance type. I’m not going to put products into my hair and spend time in front of the mirror blow drying my mane into submission. And, I still need to be able to put it back, or up.” And then I let go. Kind of.

That afternoon, I picked up Bink from her day program wearing my new ‘do. She’d been warned, and after her name was called she peeked anxiously around the corner to assess the damage. Then she trundled towards me and put her hand up to touch my shiny, freshly-blown-out hair that would probably not look that stylish again until or unless I visited a salon.

“It’s still Gooey Oyster,” she said, and my heart got all melt-y and began to drip big blobs of love and appreciation all over the Pergo floor. My girl was doing her best to find a positive in this situation that she’d been dreading for years. Though Superguy and a few select others would have some sense of what a big deal this was and is, only I knew the true magnitude of that moment in the lobby of her day program. It could so easily have gone a different way; and it didn’t, because she is amazing and wonderful and she is growing and changing and she defies expectations more often than I probably give her credit for.

Bink is used to it now. She informs me at least daily, ”You’re not girl hair but you’re still gooey oyster!” Only twice has she wondered aloud if I’ll ever have girl hair again.

I do feel inclined to tell you, reader, that my hair is not actually short in anyone’s estimation except Bink’s. I had about six inches cut off, which leaves me with layers that end below shoulder level. It’s easier to manage this length, for sure, but I also feel benefits beyond shorter drying time and fewer tangles.

Bink’s willingness to bend and her ability to adjust to this big modification of one of her major comfort items leaves me feeling hopeful and proud, and lighter in more ways than one.

–Melinda Coppola

WALKING


At twelve, thirteen,
fourteen months,
when most children
begin to walk,
or make a show
of pulling their soft
wobbly bodies
to stand,

you were content
to sit and rub
the carpet, watch
the fibers grow fuzz
beneath hands
you didn’t seem to know
belonged to you.

A plump child you were,
with flesh-ringed legs
and arms,
at least three chins.

As you grew
stronger, my arms
did, too,
carrying you
room to room,
holding you
while you screamed
inconsolably,
and turned away
from others,

while you recoiled
at sights and sounds,
textures, certain clothes,
and any kind of shoe.

We didn’t know about autism,
not yet,
but I quickly learned
what brought you comfort.

When you were at peace
I could be, too.

I wonder
if you recall,
as I do,
when you were sixteen, eighteen,
twenty months
plopped on the grass,

making a study,
it seemed,
of the individual green blades,
your fat hands
brushing the tops of them
over and over,
your face some mix
of stern concentration
and happy fascination,

sweet reprieve from the screaming,
relief for my strong
but tired arms.

And still you grew,
and rebuffed
my attempts
to hold you up by the armpits,
sing walking songs
show you videos
of babies toddling happily
from toy to toy.

It was this,
the not walking,
that brought my questions
to doctors,
to Early Intervention,

that began the parade
of specialists and therapies
I never dreamed
would become our norm.

It was a blur in many ways,
that time,
but I recall when
you took your first,
tentative steps.

You were two
years two months,
finally ready
to trust your feet
against the hardness of the earth,

to step forward
into the blur of delight
and confusion
and newness
and noise.

–Melinda Coppola

Kind or Write?


I’ve been finding it challenging to encapsulate life with my daughter, Bink, lately. Hard to shape words for the page and even for casual conversation with friends, many of whom have their own experiences with parenting and/or caring for people they love who have special needs.

It’s not for lack of material. Bink continues to surprise me at times, wear me out at others. She delights while calling forth all my mental, emotional, sometimes physical resources, in almost equal measure. She’s growing incrementally towards greater confidence. She’s opening up, revisiting some foods she’d dropped from her odd gastronomic repertoire, talking of trying some activities like skiing; these are things that are, in my world, a very big deal.

There is so much I want to share, and yet I’ve been noticing more guard rails hugging the road I walk and ride while parenting her. Sometimes my own hands show the callouses that tell me I’m on the work crew, building those stout metal fences with what might be a thought of safekeeping. But what is there to keep safe? I’m aware of maintaining some privacy for her and for our family. That’s the why for the blog names I’ve given daughter and husband, and the way I don’t show many pictures of her.

Maybe that’s part of the tension. As she grows, so do her talents. I’m biased, but she has a range of them that almost beg to be shared. She sings beautifully, and has a huge memory vault of songs going back to even the little tunes I made up for her five or six months after she was born. I want to record her and share some of that melodious magic with you. She is developing into quite an artist, and as our walls that display some of her work
beg for mercy, the canvases stack up along the baseboards. She wants it all framed and hung, you see.

She has been horseback riding for over a year, an activity that Superguy and I shared some pessimism about when she began. Knowing her as we do, we figured the combination of a good bit verbal instruction (which can overwhelm her), the smell of the barn and paddocks, and the physical challenges of maintaining good posture and engaging core and leg muscles for thirty minutes would culminate in a short-lived equestrienne experience. Between us we probably gave it four weeks. I’m thrilled she has proven us wrong!

I’ve talked with Bink about recording some of her singing and sharing it, and she said that would be OK. I know she’d be fine with gaining a few more admirers for her paintings, too. And there is just so much life, so much that is funny and sad and fascinating in our day-to-day. It all wants to be written, whether read by fifty or by three. And yet.

I’m fortunate to have a few handfuls of writer friends, gained mostly from some fabulous online groups and communities. Our blocks are a common theme. There seem to be endless reasons to stop writing, or at least to stop posting what one writes. Sylvia Plath wrote that self-doubt is the worst enemy to creativity, and I’d have to concur that one ranks pretty high on the list. Not surprising, right? We all have an inner critic, and s/he can be very compelling, and nasty.

And then there’s the prickly issue of other people. I think most writers are introverts, and some of us are, umm, kind of sensitive. Working on thickening our skin, perhaps, but tender in places. A casual, well meant, and possibly quite constructive comment, or an innocent question, from a family member or close friend that reads our work, can send some of us into the claws of inner critic, the alpha bitch. “ See? Your writing sucks,” she’ll hiss. The effect? Shutdown.

There are, also, the other other people. The ones who have had a big impact in not-so-positive ways. For Bink,
some of these people and her interactions with them can take up a great deal of her headspace. Her mind seems to be full of what I can only describe as files. They go back to her infancy (and even before, but that’s a subject for another day).

Once a file from a certain part of her life is open, the things that happened during that time period get played out over and over. I mean this rather literally. Unfortunately, a lot of her recall involves unpleasant scenes and comments. She loves her old-fashioned tape recorder, and she can regurgitate the exact comments people made, in a good imitation of tone, volume and inflection the way she experienced them. She can even recall the date and day of the week these things were said, or done. She scrawls in her journal about these things, too, and creates lists of questions for me to answer the way I think the particular person would answer them.

Bink doesn’t record the sounds and events of her past for the benefit of an audience. Save the aforementioned lists of questions for me to answer, she doesn’t seek a reaction from me or Superguy. In fact, she seems a bit taken aback when we suggest that it may not be the best thing for her to perseverate endlessly on the things people did or said that upset her. She might respond with, “ I’m just trying to understand it.” Or, “ I like to hear the voices.” or even “ It’s important to me.”

As you might imagine, it can be jarring and also enlightening to hear the things a few certain people said to Bink, sometimes decades ago. She doesn’t know how to lie, so there is no doubt these things were actually said. Some of them are appalling. I can only hope they were not actually yelled, and that the loud volume she recalls and imitates is a result of her sensitive nervous system and wiring.

Bink opens new files every five or six months, and re-opens old, familiar ones more often. There is always more to learn from her well-organized memories. Mostly, the people who star in these spoken or written negative memories are not actively in her life anymore. That’s probably a good thing for them because I’d have questions and some sharp words for them.

What does this have to do with my difficulty writing about Bink of late? Well, it’s a delicate thing, to either include or extricate the parts about her obsessions with unpleasant ghosts. I think it’s very unlikely that any of them read my work, but one never knows.

I’m a big fan of Metta, the practice of loving kindness meditation. It has saved me, at times, from becoming entangled in sticky globs of anger or fear or bitterness towards a person or people or happenings that seem to have hurt or wronged me, or Bink. There is a process to the practice, a form and shape that starts and ends in the heart center. It begins by directing deeply loving attention first to the Self. Next, there is a gradually expanding circle of invitees, beginning with the loved ones, then the liked ones, then the neutral people, and finally the people (or circumstances) who challenge us the most. Yup, the practice is to open the doors to the most tender and loving place inside. Once the guests arrive, we make them comfortable, and then proceed with blessing them with happiness and peace. It’s not an easy practice, but it can shift the entire energetic relationship we have with life.

Therein lies my answer, I suppose. I can write about Bink’s thorny memories, or my own. I can poem about anything, include anyone. I just need to be willing to accept reactions, and remember to bless each person and circumstance, present or past, who have crossed paths with Bink, or with me. Thank them for the lessons and wish them an honest well-being. And, just maybe, Bink’s opened files, her very vocal recitations and hastily penned recounting of less than pleasant things, can serve as reminder that love can indeed be greater than fear, and the choice to forgive is the very best gift we could give ourselves and each other.

If you’ve read all the way to the end of this run-on piece, terrific! And if you haven’t, that’s fine, too. I’ve just written about not being able to write about Bink. Surely, that counts as writing about her, which means it’s time for tea.

“I write to discover what I know.”
–Flannery O’Connor

PS: Bless you. I forgive you. Be well.

Pentimento

pentimento
noun
pen·ti·men·to | \ ˌpen-tə-ˈmen-(ˌ)tō
Definition of pentimento
A reappearance in a painting of an original drawn or painted element which was eventually painted over by the artist

The canvas: my face in the mirror, fifty eight years familiar with this world.

Five or six, roaming like the free-range child I was, I caught the sharp end of a rock that soared from an older brother’s slingshot. He didn’t mean it, don’t think he aimed at me, but the impact was hard, and the flesh below my left eye tore, and years later my mother said,” We probably should have gotten you stitches there.”

It’s faint now, a sleeping crescent moon at the top of my cheek. Grace that it didn’t hit my eye, methinks. Pure grace.

Pentimento.

Seven years old, my neighborhood friend
Chrissy rammed a big branch end into the tender space between my nose and my lips, that little grooved path that caps my cupid’s bow.

I’ve since learned its name is philtrum, and no hard feelings, but the game we were playing tattooed a constellation of broken blood vessels across my upper lip, and dotting towards the tip of my nose.

Pentimento.

At twenty nine I had some of that lasered away. Safe for the pale philtrum, not so for the tender lip herself, and so I carry the permanent memory of that day as some big red blotches across my lip. Lipstick never covers it completely.

Pentimento.

Teenaged and beyond, the blackheads landed on my nose and built whole neighborhoods there, and some pimple friends moved in to join them. An anxious one I was, and I discovered the simultaneous relief and delight of squeezing all those things.

So many years later, I can find a few little craters, and small dark lines that seem to drag one pore into another. Not enough so you’d notice, but my nose reminds me I lived through those times. And survived.

Pentimento.

At forty five the crinkling started. The skin at the outer corners of my eyes led the way.

Vertical lines across my forehead came a little later. Layering and playing with texture and color, nature gently added grooves. There are smile lines, and the little cupped channels below my eyes that trace the outlines of darker circles there.

Pentimento.

Sometime between then and fifty, one side of my mouth shifted downwards. It has the oddest effect, like half of each lip is larger, and the drooping side disappears into itself. Sometimes, I paint on lipliner to even it all out.

Pentimento.

Around fifty I began to notice that the skin was slowing way down. Once pressed and imprinted with pillow or a hand propping chin or cheek, she wasn’t so quick to plump back into her former texture and shape. Sometimes I carry the pillow lines until lunch, and I’m an early riser.

Pentimento.

The eyebrows have thinned. Some come in white, and there is a vacant patch in the thickest part of the right one. Sometimes, I pencil in some dark to seed that bare spot. Often, I don’t. The white hairs? I usually thank them for visiting before plucking them away.

Pentimento.

There are some random dark splotches over the cheeks, above the lip.. They call them age spots, I call them places of interest. I don’t cover these, though I wonder, sometimes, how many more will arrive, and if I’ll care.

Pentimento.

Face as canvas, and the mirror shows me the privilege of a longer life than many are given. On close inspection I find layer upon layer of sad and happy, hurt and scared, content and growing wiser. I find hope and despair, and lots of letting go, and a glaze of peace on top of it all.

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