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is this anything

~ a compendium, by Nancy Coughlin

is this anything

Tag Archives: Hannah

version (a poem by my daughter, Rebecca Gonshak)

13 Wednesday Jul 2016

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autism, compassion, grace, grief, Hannah, helplessness, loss, love, memory, poem, rebecca gonshak, transience, words, zen

Two kids in the bath again,
me just a smaller version of you.
If you cried, I’d sing
like a miniature mother, Moonshadow
and Bye, Bye, Blackbird. No, I didn’t sing
Bye, Bye, Blackbird then. Oh well, all memory is a lie.
You used to run from wall to wall of the house,
but did I really run after you?
I’m older than you now
but I still feel like a version of you.
That’s an invention too, I can’t say what you meant
in your silence. But if I could go back to that bath
and our feet could touch, and you splashed
– I know you would splash –
I would sing and sing until I lost all words.

                                            Image

lesson learned (a poem)

21 Tuesday Jun 2016

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autism, grace, Hannah, poem, surrender, writing

 

gravestones

lesson learned

“darling girl”—I had them scratch
it on your stone—I’m not sure why.
I rarely called you that in life.
I always called you “pumpkin pie”—
a silly name, bereft of grave
solemnity. I must have been
too timid to be true, back then.
I’ll never be that way again.

my latest notion (a poem)

02 Wednesday Dec 2015

Posted by is this anything in autism, hannah, poem, writing, zen

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autism, family, grief, Hannah, poem, transience, writing, zen

My latest notion

A website for Hannah,
like they put up for Santa
on Christmas Eve. We’d
track her soul’s holiday as, freed
from form, she strolls the universe.
Watch her atoms intersperse
with those of meteors!
Glimpse her changeless source!
In our old days, of course,
the web was bare. Likewise,
tools for such an enterprise—
that spectral radar—had yet
(have yet) to be invented.

girl hiding2

On days you can’t remember (a poem)

29 Thursday Oct 2015

Posted by is this anything in hannah, poem

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autism, death, grief, Hannah, motherhood, writing

On days you can’t remember

On days you can’t remember who she was,
you disinter the pictures (you don’t want to!),
then focus on benign peripheries,
so that the first contritenesses that haunt you

will show themselves banal: ‘whatever happened
to that armoire?’ ‘That dishwasher broke down.’
‘I miss the velvet couch.’ ‘I wish we hadn’t
let the thistle overrun the lawn.’

Entice your vision toward more pointed hints:
Salute the crib, the changing table. Welcome
a glimpse of diaper bag. Recall its scents
of disinfectant, sour milk, and talcum.

You deftly sidestep ‘what’s she thinking here?’
and ‘does she know it’s me behind the camera?’–
yet trip on ‘why such tangles in her hair?’
and ‘did we never change from our pajamas?’

Retreat beneath the quilt her grandma made.
Review the popup book, rewind the mobile.
Respin the top, recoil within the bed.
Renurse, resing, resigh, relaugh, rebabble.

And, should you need to, build a sturdy house
of quatrain stacked on quatrain. Window-free
at last, live lyrically, your mind diffuse–
all squinting rhymes and harmless frippery.

Go, dear one. Pile words one upon another.
Form thick iambic castles, if you wish.
You have the right, love—you who were her mother—
to veil what life remains in artifice.

hannah

grok* (journal entry)

22 Monday Sep 2014

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acceptance, apophenia, autism, choice, comfort, family, grief, grokking, Hannah, illusion, journal, loss, love, memory, metaphor, motherhood, quote, robert heinlein, serendipity, slice of life, thinking out loud, zen

 

vintage-packaging-flower-seed-packets-from-thes_icnfe_4

(http://thepackaginginsider.com/vintage-packaging-flower-seed-packets-from-the-1800s/) (lovely!)

Journal entry, August 28, 2014

Cleaning house yesterday, on a forgotten shelf I found a shirt of Hannah’s. A stretchy Goodwill t-shirt, powder blue, with folksy flower-seed-packet art on the front. Minor stains, of course, plus a hole in the back collar where someone (I?) had clumsily lopped off the tag. [Shirt tags made Hannah itch.] I held the shirt to my face and breathed it in like an idiot seeking the flowers. But no, it was just that the shirtfront–and then the shirt’s inside–was the only part that hadn’t been exposed to nine years of dust.

And I believed the shirt still smelled like Hannah, believed that I could know–could grok*–her presence, her self, merely through these greedy inhalations of not-quite-random air. I sat on my bedroom floor and pulled the shirt onto my head (think of a blind bank-robber), and then, to a point far past absurdity and fast approaching asphyxia, I breathed in and out its ineffably Hannah smell. (Must, dust, detergent, every mundane staleness, but something of her there too–something.) I chose to feel myself awash in her essence. As in the many dreams I’d dreamed, hope-caught, throughout her life, I felt free once more to slip beneath the surface of Hannah’s embryonic, oceanic world, and to breathe, however feebly, underwater.

I chose to feel–and to believe–all this on such a primal level that the mind had no clue of the choice till it was made. But with a shrug, quite used by now to the heart’s vagaries, the mind humored us both. I nuzzled for one last deep second against the thread-worn seams that defined the shirt’s armpits. Then I pulled the shirt off and held it awhile. I dusted it, refolded it, and–ah, my darling girl, now what to do? Replace it on the forgotten shelf? Cleave it into rags? Throw it away? I couldn’t, can’t, decide this yet.

Ah yes, but still, how well I know: let go, let go, let go, let go.

——

http://en.wikipedia.org/wiki/Grok:

*Grok /ˈɡrɒk/ is a word coined by Robert A. Heinlein for his 1961 science-fiction novel, Stranger in a Strange Land, where it is defined as follows:

Grok means to understand so thoroughly that the observer becomes a part of the observed—to merge, blend, intermarry, lose identity in group experience. It means almost everything that we mean by religion, philosophy, and science—and it means as little to us (because of our Earthling assumptions) as color means to a blind man.

both (quotation by Nassim Nicholas Taleb)

14 Thursday Aug 2014

Posted by is this anything in autism, quotation, twitter tweets

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acceptance, autism, black swan, both, compassion, death, empathy, grace, Hannah, happiness, illusion, imbalance, letting go, loss, motherhood, Nassim Nicholas Taleb, play, quotation, randomness, surrender, transience, tweet, union, yin yang, zen

“Love without sacrifice is like theft.” —Nassim Nicholas Taleb100_1497

How it was (a short essay i wrote for a journal called “Narrative Inquiry in Bioethics”)

12 Monday May 2014

Posted by is this anything in autism, essay

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autism, essay, grief, Hannah, imbalance, memory, poem, transience, zen

How It Was

If I’d thrown her through the window that night, no one would have known I’d done it. After all, how many windows had she broken already? How many walls had been cratered by the smash of her head? (We even had a standard, bleak joke about it—that we could measure Hannah’s growth by the height of the holes in the plaster.) I could have gone into her room right then, and under cover of dark I could have dragged her to her feet and flung her hard against the one broad pane we hadn’t yet replaced with plexiglas. There’d be no obstructions on the way down, and only hard sidewalk below.

But what if the window didn’t break? Or if it didn’t break enough, if it left her halfway in the room, and only bleeding? The thing was, of course, that Hannah never seemed to bleed, or to damage herself at all, in her plunges through glass. She was amazing that way. She seemed unscathable in the direst of circumstances, and by now we’d gotten so used to her invulnerability that, if I’d thought about it, I’d probably have believed that she could walk through fire without getting burned, get hit by a car without breaking a bone, drink poison and feel only happy effects.

Not that I ever thought of burning her, breaking her bones, feeding her poison. Understand, if you possibly can, that I’d have been the one dashing into the fire to save her, yanking her out of the line of traffic, forcing the ipecac down. It was hardly ever that I seriously considered throwing her out a window.

And even now I was giving up the idea, because I realized that the window probably wouldn’t break completely, so she wouldn’t fall all the way through. I’d have to shove her out the rest of the way, and I knew that was far beyond anything I could ever do. Which meant that Hannah, impervious or not, would surely end up wounded, bleeding, hurt—and not dead—and I couldn’t have borne that. The last thing in the world I wanted was to make her feel even worse than she did already.

***

My firstborn daughter was diagnosed with autism at the age of three. At first the experts we took her to considered hers a “mild” case, and I clung—by talon, by tooth—to that word, “mild,” for several years past the point when everyone else, even the experts themselves, could see that the experts had been wrong. In her seventeen years of life, Hannah never learned to speak her own name, much less to communicate her thoughts, needs, and feelings in any way those of us who loved her could readily understand. And for a long time this seemed a terrible, terrible tragedy to me—this growing realization that she would probably never be able to learn much about the world at large, or follow the plot of a simple story, or play a real game, or make a friend, or fall in love, or live on her own. But it’s amazing what you can come to accept, if you have to, and eventually I reached the point where absolutely none of that mattered to me anymore, and the only thing I really wanted was for Hannah to be “happy,” in whatever form that might take for her, and for however long it could last.

Her “rages,” as I came to call them, began around the time she turned six, and accelerated as she reached puberty (which often comes early to autistic children: Hannah had her first menstrual period at the age of nine). For an hour at a time, sometimes even for half a day, she could, indeed, be very happy—rocking in her dilapidated La-Z-Boy, swinging as if to touch the sky, laughing and swaying as she stood surveying the world from atop the highest banister or playground slide or jungle gym she could find. But in a single, breathtaking instant, all that could change, and Hannah would suddenly let out a shriek and start pounding her head as hard as she could, over and over, against the hardest nearby surface. Sometimes these bouts of pain and fury would last for just a few minutes, but sometimes, and increasingly, they went on for hours.

For the first several years of her rages, she was still small enough to hold down. If you were quick enough you could get to her before she could hurt herself much, and you got to be pretty adept at slipping over her head the special, cushioned helmet the doctor had prescribed. You learned to hug her tightly from behind, to hold her arms close against her chest, and to lean your head backwards and away so that she wouldn’t be able to ram the back of her own head against it.

But somewhere around the time she was twelve or thirteen, she got too big for all that, and it took a team to stop her from hurting herself or other people. The teachers in her special ed classroom would often have to “call a code” over the school loudspeaker, which meant that the burly male gym teacher down the hall would drop everything and rush over to help. At home, of course, we didn’t have such an option, and if I was alone with Hannah when the raging began, and I’d tried everything on my list of strategies to calm her down—music, videotapes, food, play-doh, stress balls, fuzzy pipe cleaners, weighted blankets, holding her, singing to her, providing her with silence and space—I’d often have to give up. My other daughter, Becky, five years younger than her sister, would already have hidden herself in the basement. I myself would try to stay in the same room with Hannah for as long as I could, but over time this became harder and harder to do. Her rages had begun to take the form of attacks on the people around her, and she was dangerously strong. I’d been pinched, clawed and bitten many times, had had my fingers pushed backward to the threshold of breaking, had been nearly knocked out by the crash of her head against mine.

The state-sponsored social services agency for Butte, Montana, is called Family Outreach. Our case worker, Elizabeth, had been coming to the house two or three times a month ever since Hannah’s diagnosis, but though she’d been helpful all along the way—providing us with respite care, at-home trainers, books, therapeutic toys, funding for me to attend autism conferences, a Medicaid waiver to help cover Hannah’s medical bills—she was beyond her depth, as we all were, in trying to deal with Hannah’s violent outbursts. Meanwhile, my own mental health was disintegrating, as was my marriage, and in our family’s last-ditch effort to ease the burden we bought a second home, a cheap little place just a few blocks down the road from where we lived. We called it our “respite house,” and for a while my husband lived there full time. Then for a while, as I continued on the path to falling apart, he and I took turns staying there every night, and sometimes Becky and I would stay there together.
In the summer of 2002, Hannah turned fourteen. Around that same time, Family Outreach decided—I’m not sure just why—to reassign Elizabeth and to provide us with a new case worker. Her name was Maggie, and she seemed young and inexperienced—flustered by the paperwork, all the notes she was supposed to take, the charts to fill out, the various forms we both had to sign every time we met. But somehow she saw immediately what other people in Hannah’s life—doctors, teachers, therapists, case workers, and even (especially?) I myself—had never quite realized: namely, that ours was a family in complete crisis, and that unless a fundamental change took place very soon, we wouldn’t survive.

The first option Maggie came up with was straightforward: we could surrender our parental rights to Hannah, in which case the state would take her from us and set her up in some sort of foster care. My husband and I actually talked this over for a day or two—this business of simply handing Hannah over to the authorities—although I think both of us knew all along that we could never actually do it. So then Maggie came up with her second plan—the plan that saved our lives. We would move Hannah to the respite house, make the place safe and comfortable for her there, and take turns staying there with her each night. Meanwhile, Maggie arranged for an army of caretakers—some of them had been already working for us, but many were new—to work in shifts to take care of Hannah after school and on weekends.

Hannah made the transition amazingly well, and in fact within a week of moving to the other house, she seemed clearly to prefer it to living at home. At first the caretakers came to the house one at a time, but over the next couple of years, as Hannah grew more and more dangerous, it was decided that they needed to work in pairs. Sometimes, especially toward the end, there were three or even four caretakers at the house at once: one woman’s job was just to come in each night at 5:00, cook the evening meal, and give Hannah her nightly shower. Another woman—a specialist in an autistic therapy similar to Applied Behavior Analysis—drove from Helena to Butte every weekend to teach that training method to Hannah’s everyday caretakers. A video-recorder was installed in the kitchen of the second house, so that Hannah’s therapeutic progress could be monitored and the training methods adjusted.

Meanwhile, around the time she turned sixteen, Family Outreach started applying, on our behalf, for a residential group home placement for Hannah. Ironically, though, the very thing that made such placement so urgent—Hannah’s rages—was also the reason she was continually turned down. (After a while, every time a group-home position opened up, we faced an impossible dilemma: if we emphasized how hard Hannah was to handle, she was rejected as inappropriate, but if we played down her violent behavior, then the state saw no urgency in our situation, no reason why a sixteen-year-old girl shouldn’t wait a couple more years before placement.) Still, we kept hoping and applying, because we’d been told that the unprecedentedly high amount of state funding we were receiving to maintain what was essentially Hannah’s one-person group-home set-up might suddenly be withdrawn once she turned eighteen.

If Hannah had lived, she’d be twenty-three years old by now, and I don’t know—I can’t even guess—where and how and with whom she’d be living. But life goes whichever way it wants to, so instead Hannah died, a week beyond her seventeenth birthday, of an epileptic seizure in her sleep. Some people—good people, friends and family, many of whom have shown a notable capacity for making sense on other occasions—have declared her death a “blessing.” I marvel not only at the certainty of such people, but at the sweet relief they seem to find in being so certain. Meanwhile, some six years after Hannah’s death, I myself still don’t know what to think, and I don’t suppose I ever will.

Reminder (a poem)

21 Thursday Nov 2013

Posted by is this anything in autism, memoir, poem

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Tags

autism, Hannah, memoir, memory, poem, surrender

Reminder

On my forearm, close to my wrist,
there are two white scars so faded
and tiny that you might not notice them

even if I pointed them out to you.
They’re the remnants of a bite mark
I received on Christmas Day, 2001. One

is a short white line and the other is
roughly circular–the circumference
of a molar. And of course they’re not all

that remain of my daughter–I have stacks
of pictures and videos, school art projects,
doctors’ reports, activity charts, MRI scans,

Special Olympics medals. I’ve kept five
or six pieces of her clothing, including
the sneakers I wear when I take the dog

for a walk along the rutted ATV trails
just west of town. I even, ridiculously, have
her brown velour La-Z-Boy rocker, ripped

and stained, the underlying structure so
decrepit that when you lean back into it,
the broken laths curve around to

conform to the shape of your body,
as if in capture or embrace. But it’s
the little scars that soothe me most,

because they’re always right there
with me, like pale tattoos, and they’ll
be there till the day I die.

How It Was (a poem)

20 Wednesday Nov 2013

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autism, grief, Hannah, helplessness, poem

How It Was

If I’d flung her through the window that night,
no one would have known I’d done it. For how many
windows had she smashed by now? How many walls
had she cratered? We lived in an asteroid storm.

(A feeble joke we told our friends: that we
could gauge our daughter’s growth by the height
of the holes.) I’d pinned her down—embrace turned
tourniquet–on our bare, midnight mattress. But

I could have let her go, and when she charged,
I could have shoved her hard against the one
broad pane not yet replaced with plexiglas.
Her only chaperon: the air. Only sidewalk,

her release. But if the window didn’t break?
Or didn’t break enough, and left her equipoised,
and only bleeding? We thought her unassailable,
thought shards of glass, like all of us, were barred

from ingress. (Was her very skin oblivious?)
However founded in calamity, she seemed
unscathable. I seemed to think she might
cavort through fire unburned, clash with a car

without breaking a bone, drink poison and feel
merely sated. Not that I had ever thought
of burning her, breaking her bones, feeding her
poison. Understand, if you possibly can,

that I ached to be the one who leapt
into the fire, snatched her from the line
of traffic, forced the ipecac down. It flew
at me just once (no–twice)—this fierce retort:

throw her out the window. This urge—more howl
than wish–I let it go. For I knew windows well
by now. They’re not like in the movies. She would fall
halfway through and dangle. Is there a heart

that wouldn’t vaporize at once, rather than
abet that second push? …And so she’d end up hurt,
not dead. (Beyond my scope, this lone barbarity:
to make her feel worse than she already did.)

One Thing I Know For Sure (a vignette)

18 Monday Nov 2013

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autism, comfort, Hannah, miracle, slice of life, surrender

One Thing I Know For Sure

This happened on what, by our standards, was an ordinary night. It was maybe a year after the diagnosis; Hannah was four years old. We were in the living room, and I was holding her, rocking her, in the La-Z-Boy. In those days she still liked being held, at least by me—I’d kept her used to it, I guess, by all the nursing, which was something she still loved so much that I’d given up the habit of bathing very often, because I knew how much she enjoyed breathing in my sour, mammalian smell. But right now I wasn’t nursing her. We were just rocking slowly, and watching TV, probably one of her Sesame Street videos, I don’t know. We were alone—I don’t know where my husband was.

I was talking to her endlessly, just absently commenting on the action of the video, or singing along with the songs. It’s what they tell you to do, of course—you’re supposed to keep talking and talking to an autistic kid, trying to make some little connection, elicit some tiny response. It came to remind me of how, if your ship is sinking in the middle of a dark empty ocean, you keep sending up flares anyway, just in case someone else might be out there, invisible to you.

We felt cozy that night: we both liked the Sesame Street videos, and we both liked rocking, and I think it might have been winter outside, because being inside felt more than usually luxurious. I leaned in close to Hannah’s ear, and I whispered, “I love you, Hannah.” And as we kept rocking I added, “Now you say, ‘I love you, Mommy.’” And it was just one of my rituals—I had so many in those days. I didn’t expect a response. I didn’t expect anything. It was just another of those things people told you to do, like waving goodbye when she boarded the pre-school bus, or trying to coax her into blowing out the candles on her birthday cake.

But on this particular night, just like that, as if it were the most everyday thing in the world, Hannah actually turned her face toward mine and said, very plainly, ‘I love you, Mommy.’”

Or maybe she didn’t turn her face. Maybe she just stared into space as she said it. It happened so fast, and it was almost twenty years ago. I’m not sure I can trust my vision of it. I can’t remember the tone of her voice anymore, whether it seemed heartfelt or just mechanical, parrot-like. (‘Echolalic’—that was the term they all used.) Just seconds after it happened, in fact, the whole thing fell apart, started to feel completely unreal, like a scene from one of the thousands of dreams I used to have in which Hannah talked.

So by now, some five years after her death, the only way I know the thing happened at all is that I made a point of remembering it. I said to myself—right then, as I held Hannah in the chair, and we watched Sesame Street, or whatever it was—I told myself that I’d have to hold on to this moment. It might be the only time I’d ever hear these words, I thought, so I’ve got to carry them with me forever, and they have to be enough.

Link

After the Hour of Lead (a link)

16 Saturday Nov 2013

Posted by is this anything in essay

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autism, comfort, essay, grief, Hannah, surrender

After the Hour of Lead (a link) (to an essay about what happened next)

emily dickinson

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