WHO WILL SING? Autism, Adulthood, and Home

Bink and the big, wide sea

 

WHO WILL SING?

She gets older, this daughter of mine,
as do I, and the heavy question behind
each day, and woven now into each year:
what about when I’m gone?

She can’t live with you forever
I’m told, and I know this to be true.
Some of her peers, twenty-ish,
thirty-ish, middle aged,
have gone to group homes,
happily or not so,

and still the world spins,
and more questions arise,
for the options aren’t
pretty or plentiful,
and my imaginings vacillate
between dark and bleak.

Who will sing to her, mornings,
and guard the rituals
that define her boundaries?

There are the questions she asks
of songs, or objects, or days,
or other people, some of them dead,
some she has no contact with,
and I am to answer them
as if I am that person, that thing,
ten a week, typed up by Friday at 3pm.

There is the morning question or statement, often cryptic,
and she anxiously awaits my videotaped response,
though I am in the same room.

There is the crucial, long enough pause
between activities,
the deciphering of scrawled dreams,
decoding her language
in time to understand
she means This
and not That,

planning the next day’s snack,
next week’s lunch,
offering the hair,
two sided and girl shaped,

reminding and re-answering
a hundred times a day,
why him and not her,
why people say this,
do that,

what it means to advocate
in front of people,
in real time,
rather than to the air,
in a corner, hours later?

You say
she will adjust.
You say
she will deal,
must learn to cope,

and if I weren’t so damned appropriate
I’d ask you what it would be like
if someone took control of your every activity
because it’s easier that way,
(for them),
because they don’t understand
what you need,
because there are four or five others
living with you
who need things too,

what if the notes, the records,
the story of your life,
were left in a drawer somewhere,
unread, or read only once
by a supervisor
in an office somewhere,
and

what would it be like
if your clothes were too
rough against your skin,
and you didn’t have the words,
or, if you did,
they came out a month, a year later,
and so you had to wear these garments
that sandpapered your tender flesh

and then when you scratched your arms
til you bled,
what if you were given
a behavioral plan to curb
that thing you were doing to cope?

I’d ask you what it would be like
if the proverbial walls of your house ,
the very things you count on
to be there, day after day,
your schedule, your calendar,
your To-Do list,
were erased one day,
and the people you count on,
let’s call them staff,
changed every few months,
and didn’t read the notes about you,
or forgot what was in them,

and you were expected to be compliant,
do as you’re told,
and deal with it,
even if you didn’t like
the food you were given,
the activities you were driven to,
the staff who you relied on
for food, for a bath,
the others who shared the place
you are now supposed to call home?

Too attached, you say?
Am I melodramatic, or just well read?

You do the research,
ask around,
go check out the houses
you say she should live in,
be the fly on the wall,
and the report back to me, please.

I distract myself
with the gifts, the burdens,
the details of her life.
Tea too hot,
song too rough,,
packed lunch was uninteresting,
everything needs more salt.

In the land of Autism
the tiniest thing
can make or break a day,

and when it breaks—
the day, or my heart—
when it breaks
the healing is slow, uneven,
and the memory of every assault
on the nervous system,
hers or mine,
seems imprinted on the walls
of her cells, of this place
she calls her home,

but here we incorporate it into the décor,
write poems about it,
scratch an itch against the rough
patch in the plaster.

We make it all right.

All right then,
Tell me true—
Who will sing to her
When I’m gone,
Who will sing?

 

-Melinda Coppola

 

 

 

 

 

 

 

 

STONE LOVIN’

Dear reader, is there something in the natural world that you are really drawn to? Birds, clouds, pine trees? Lightening storms? Is there something for which you have an unrelenting affection? For, me, it’s stones. Specifically, I’m drawn to stones that hail from the edges of the sea.

I feel so very alive and content when I am walking on a stone strewn beach, or when I am crouching over them, admiring their myriad patterns and shapes, colors and textures. When I’m in communion with these rounded beauties, I have no age, no name, no agenda. I am not weighed down with layers of labels and hurry-ups and I’d-better-nots. The stones­­­­­­­—all colors, sizes, and shapes of them– touch a place deep inside me that feels like it’s been alive forever.  My relationship with them is simple and straightforward. I adore them, I respect them, I’m in awe of them. I also delight deeply and earnestly in my time with them, and…. I know them to be alive. They vibrate at a much slower rate than humans do, but they have life nonetheless.

I collect them, but only if they tell me they want to be gathered. My hands and eyes move towards the stones I am drawn to, and sometimes the vibration coming from a stone feels like a definitive NO, don’t take me. Not today. And so I don’t pick that one up, or if I already have I’ll place it gently back down with a silent thank you. Sometimes they are happy to be put into my bag or bucket, and other times it seems they are entirely neutral.

When I am on a beach that is home to stones, preferably in the early morning or late afternoon, I feel like I am surrounded by the most exquisite jewels the Earth has to offer. Who needs diamonds, when there are such gems as these, smoothed by time and water and wind and imbued with a wisdom I cannot adequately describe.

I have thousands of stones in my home and yard. When I have the time and feel the calling, I make art with them. Cairns, specifically—intentional stacks. Here again, the stones guide me in the process. Some want to go together, some are neutral. Some will make it quite clear they do not want to be placed on top of that rock, or in that cairn.

I used to just balance the stones, and I do have some cairns that live that way for a long time. About ten years ago, the thought of gluing them together came to me. I felt my way through that idea, and then brought it to the stones, not knowing how they would feel about being glued. Their radiated answer? Yes, glue is OK. A decade of our time seems to be like a few moments of theirs, and their languid vibrations do not react the way ours might. My deeper sense is that, if they are glued in a cairn and the time comes for them to be free again, the cairn will simply break apart.

My stone love brings me peace.  I’m grateful for their steady reminder that true strength and real balance can coexist in unlimited combinations of color, size and shape.

So, reader dear, what calls you out of doors, what helps you stay grounded when the ways of the peopled world feel oppressive or overwhelming? You can email me privately by replying to this blog, or you can leave a comment below or on Facebook. I do so love to hear from you.

Melinda Coppola