Autism Nation

Autism Nation

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My same different daughter
at twenty three years,
is riddled with anxiety
and complicated fears

Loose beads with holes —
they should be on a string! —
and thunder and lightening,
that power failure they may bring

My same different daughter
moves mountains each day
just to get through the hours,
OCD in her way

She struggles with things
many learn when quite young,
like shampoo, and shower,
and how clothing is hung.

My same different daughter
comprehends, then forgets
she clings to routine,
is indifferent to pets

My daughter, same difference
can be quite verbose
you can think it nonsense
but if you listen, real close,

you’ll begin to glimpse patterns,
and reasons, and more;
you’ll notice her humor,
literal to the core

My same different daughter
sees colors in song
she smiles when she’s anxious
and we get it all wrong

My different same girl
offers such fresh perspective
makes all of their judgments
seem so like invective

My quite different daughter
hasn’t the least bit of care
what you think of her outfit
or how often you stare

My sweet same daughter
gets so much just right
she’s happy with little
prefers loose to tight

Her laugh is heard rarely
but oh! when it flows
she bubbles with joy
from her nose to her toes.

Dear daughter, so different
is teaching me well
about patience, acceptance, and
how none can truly tell

What’s inside the mind,
and the soul, and the heart
of one labeled with autism
of one who stands apart

This daughter, same as you
in the eyes of Creation
is part of the rainbow
which is Autism Nation.

–Melinda Coppola

 

SORRY

A woman and her young daughter
walked by me, heading opposite,

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Art by Bink. Looks like a girl flying to me!

on the narrow sidewalk
outside the Y this morning.

I’m sorry, Older She said
in passing
as women often do,
and though my mouth was silent
I wanted with all my heart to say

Please don’t apologize for taking up space.
If you want to regret anything,
be sorry for shrinking away,
making yourself small.
Anytime. Ever. You most of all,

a mother
to a daughter, will you please
lengthen, and widen. Stand up

and show your big glorious self

Spread your arms wide so
your daughter will see

how to fly.

My mouth stayed shut, though,
conscious as it was
about taking up room on my face.
and I thought, for the hundredth time,
the thousandth;
Those daily speaking engagements
Internally – thought,
Externally, conversation, —
are we not
often, or always,
speaking mostly, actually,
to ourselves?

– Melinda Coppola

 

Love letter to the morning

Love Letter to the Morning

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There is much they don’t know. Our history,
the ways we cleaved together and then peeled apart.
How you went on without me, blithely,
and I mourned you even when I didn’t name it.

It. The mourning morning, the real morning that
happens between 5 and 6am. I deprived myself
of your inspiration even when awake, then,
gave myself over to the brooming and grooming of my paperworked life.

Like a wife; I’d
married it, you see. The computer, the bills,
endless spin of record-keeping for this one and
that one and those ones.
A rushing stream of ones
and zeros. Ones and zeros the sum total of dead hours
with a glowing box that sucks the senses in and into it,
out and out of me. But you, but we

Prevailed! How could I stay away too long?
You are bejeweled, bedecked with sparkling dew,
your siren song a chorus of birds and bugs seasonal,
their auditions the sweetest breakfast in my ears. Your
fragrance is a heady perfume of mystery and promise.

This heart leaps and sings
each and every time you appear,
like you’re coming just for me,
with an invitation for the daily
private showing, darkness disrobing
to reveal pre-dawn and dawn,
the sky a many-hued tapestry,
cool breeze a healing balm, and
aviary symphony,
delight for waking ears.

–Melinda Coppola

Yesterday was a Tall Haired Boy

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Bink has the most interesting ways of organizing information. Take the concept of time, for example. Do you know what gender your day was yesterday? Was it long or short haired, or tall haired? I’d venture you’ll say no, and what are you talking about? For you and me, years containing months that contain days, with names like Sunday and Wednesday, well, that seems like a workable construct. Bink, though, has her own way of making sense of the passage of time. As with other Binkisms, it took me a while to figure out that this is what she was doing as she drew symbols in her scribbled notebooks, and wrote or typed out long lists of interesting words strung together, and then sometimes recorded them. Her system is complex and mysterious, and she is not interested in sharing or explaining it, which makes it all the more compelling, to me! Here’s what I’ve discovered so far about how Bink categorizes days :

WEEKDAYS HAVE GENDERS

Bink has journals—lots of ‘em. She has Dream Journals, and Vacation Journals, and What I do at ___________( fill in name of school or day program) journals. The latter are the only ones with symbols that go with the words; circles, dots and lines. Those scrawled entries are for regular weekdays—no days off or holidays belong in this category. As Bink’s fine motor skills improved, I was able to see that those little circles are, in fact, faces. More time passed, and I gleaned that the type of embellishments around the face determine the quality of her day as she experienced it. So it’s a rating system of sorts! It seems to work like this:

Long-haired girl is a very good day. That looks like a circle with two dots and a smile, topped with a generous arc of hair.

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The same kind of face topped with a much smaller arc is Girl , which is a good day.

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Boy is a circle; same kind of face, and a flat line on top. Boy is a bad day.

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And a very bad day? We all have ‘em, don’t we? That kind of day is a Tall-haired Boy, which looks like a circle with a tall oval balancing on top, plus her standard face.

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The rating of days has become a bit more nuanced in the last six months or so. Now, a day can sometimes have two symbols. I take this to mean that it started out one way and then changed. I like to think this – the ability to understand that things can indeed shift within the same day – has something to do with what she hears at home. Super Guy and I try, on a daily basis, to introduce, model, and reinforce concepts to expand Bink’s ability to manage her life in this confusing world. “ I had some bad moments in my day today, but overall things went well.”, I might say, or “ I got upset this morning, but then I went for a walk outside and felt much better and the rest of the day has been good.” Could it be that some of that has begun to penetrate? It seems, though, that when a day has two symbols, it usually goes downhill. A long haired girl is followed by a girl, IMG_7304or a boy precedes a tall haired boy. But then, I may be misunderstanding the whole system. Such is life with the most interesting person I know!

 

Oh, one more thing about those faces: all rated days have the same u-shaped mouth. I don’t think Bink has considered changing the smile to a straight line or a frown. Maybe that kind of detail will come in time.

WEEKDAYS HAVE NAMES

Yup. You read that right. Each of the gendered weekdays has a name. Usually they are not written on the corresponding day’s journal entry. I think she just stores all the names inside the amazing card catalog which is her mind. Occasionally, though, she scribbles comments that include a day’s name on the left hand page of her scrawled “ What I do at ____________” journals. Might be something like This time the Agoong Paint Girl Wednesday was bad, or, This time the Shrimp Roll Danny Boy was very good. ( Yes, the name of a good day can contain the word boy and yet be a girl day! Don’t worry, there won’t be a quiz.) Why do some of the days have this side note and others not? I have no idea. I am not supposed to read these left-side parts aloud nor make any comments/ask any questions about this!

I’ve been able to see and hear many of the names of her days, for she sometimes writes or types out long lists of them. I might see one of these densely worded pages on her desk near the computer, or on the floor near where she sits in the living room area. At some future date she’ll then recite them into her tape recorder. Lily Pork Ice Cream, Indian Square, Bumble of the Geneveve, Thyme Girl, Salty Aron, Boobah Kelly, Ticklish Aquarium Potatoes….and on it goes. Too, she will sometimes make rows of the aforementioned symbols, with no words at all. These are pages chock full of little faces, complete with lines and squiggles and those little smiles. For quite a few years I thought these charming collections of expressive circles might be faces of kids in her school class, or extended family members. Silly mom! About two years ago I figured out that they represent days she’d had—those regular, gendered weekdays. By name she can recall the nature of said days, back years…a decade and beyond. She can do this in chronological order, or she can say the name of a day ( Siguina’s Vacation, for example) and pinpoint it as the fourth Monday in February 2005, if she chooses. Can you imagine having that type of memory? I think it would be exhausting.

As if this system wasn’t complex enough, there is yet another measure of time, another Binkism -—columns. These variable collections of days are a deep mystery to me. I know they have names, but she doesn’t seem to write them down or record them. Columns…that will be a topic for another time.

So, dear reader, was your day a girl or a boy, or both? And if you were inclined to name it, what would it be called?