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All posts for the month May, 2018

One year ago, my son started at his new school.  This marked a major turning-point in our lives—the end of an exhausting struggle with the local district and state that spanned years and, at times, pushed all of us to the brink of despair.  Prior to this, the Kinglet’s situation was so dire, his mental health so precarious, that we’d had him homebound with (largely ineffective) tutors and therapists for most of fifth grade and part of fourth.  Even after we successfully argued with the DOE for alternative schooling, it still took a quarter year to find a suitable placement—none of the special ed schools that we liked wanted to take a risk on a volatile (that is to say, “challenging”) child, and none of the ones that would take him inspired any confidence (most were just a step up from juvenile prison).

It was in late April of 2017 that we found a match with a small Philadelphia private school that focuses on higher-functioning ASD kids.  The transition was not easy, but philosophical and pedagogical differences between this school and our home public school district were manifold.  Over the past year, the Kinglet has made remarkable progress, not just in catching up with the schooling that he missed being homebound, but also with the life skills he so desperately needed but wasn’t being taught. While we’re still not able to fully relax (will we ever?), we’ve never held our breath this long without a major setback, a devastating crisis.  Our latest IEP meeting was a (comparative) breeze—the changes are minimal, agreeable, reasonable.  In short, he’s doing really, really well.

MEANWHILE, our daughter started part-time preschool in the Fall—an integrated special ed preschool, actually, in

The writer from her sickbed, with guest.

the same district that wasn’t up to educating our son.  So that’s fun. Compared to the Kinglet, the Empress’ developmental delay (mostly in speech) is relatively mild.  In fact, it’s about as mild as it could get while still qualifying for spec ed intervention—although the nuances of “mild” and what that means in terms of services has already become a subject of debate between her parents and her team.  Silver lining, having been through all the fires with the Kinglet we’re neither ignorant of our options nor shy about using them, so the Empress has already had a top-notch third-party evaluation for speech & language, which we are about to bring to the IEP next month.  Otherwise, the Empress is blossoming into a hysterically funny and sassy little pixie who knows herself and misses nothing and lights up our world like the miracle she is.

As for me… having both kids relatively stable and out of the house at least *some* of the time is lovely, although it’s not as revolutionary to my life as I’d imagined it would be.  I had planned to use this time to work on a novel, and I tried, but by December of last year it became clear that I’m blocked.  I’ve been creative in other ways, most notably with my online lit journal, which is very satisfying, but producing work of my own has been incredibly challenging.  At times even composing an email was beyond me.  I’ve made progress—some blurbs, some poems.  But no fiction.  Given that the fellowship I won this year is for fiction, this is especially demoralizing.

I have spent a lot of time thinking about this block.  I spent all of 2018 thinking about it, actually, up until my health took a nosedive in late March/early April.  It was actually a relief to think about something else (how sick I was), except then I got so sick I could barely hold my head up, and that scared the shit out of me.  Not being able to work, like, at all, not just writing but all the daily things I HAVE to do, like care for my children…

Although my health issues are not resolved yet I am doing much better now.  I’ve had some time to catch up with the minutia, and even a few quiet days to consider where I am, and what’s next.  Which is what this post is really all about.

I think the long creative block was (is?) recovery time.  Enforced by who, I don’t know (and I’d like to have a word with someone about it, yes I would).  I didn’t *want* downtime, but the truth is I wasn’t well.  Things got better with the Kinglet over a very short amount of time, but the trauma that we—that I—went through before that was intense and extensive and, in all seriousness, could have killed me.  That isn’t something you just shrug off, apparently.  Why I couldn’t have worked through it with writing, IDK, but anyway.  That’s how it went down.

Now I think maybe the sickness was an extension of that.  If we’re going to look for existential reasons for things, maybe the creative downtime wasn’t enough—maybe thinking about it obsessively, even thinking about it in terms of self-care—just wore me down until my body couldn’t take it.

Or maybe it’s just a shitty fucking coincidence.  Or maybe I’m cursed.

Either way, IDK if I’m out of the woods NOW, creatively or physically.  I know I feel different, but I don’t know what that means.  I don’t know what to do next.  I don’t know my purpose, or how best to eke meaning out of whatever life I have left.  I don’t know why the clock always seems to read 11:11 when I look up. I’m trying to work all of that out.

I’m trying.  That’s pretty much it.

An anti-vaxxer in my local Autism parent FB group posted about the latest CDC stats (suggesting an increase in childhood ASD diagnosis over previous years, up to perhaps 1 in 59, or thereabouts) . She describes it as a public health emergency, basically trying to rally an Angry-Mom revolution to force the government to take the Autism “epidemic” seriously.

On the surface, I agree that more research is necessary.  We still have a lot to learn about Autism, biologically speaking, and we have a looooong way to go in terms of changing the social and systemic paradigms that make it harder for people on the Spectrum to navigate their lives.

I have a problem with words like “emergency” and “epidemic”, though.  For one thing, they portray these rising statistics as an Autism outbreak—something happening more frequently—rather than a product of how we count.   Our awareness of Autism is increasing, we’re looking for it more closely and more broadly, thus we’re finding it.  That doesn’t mean it wasn’t always there.

My kid, for example.  Extremely verbal, academically above-average, restricted interests (video games & spongebob, at the time) mainstream enough to be shrugged off as normal, absence of obvious stimming behaviors (at the time).  It took almost eight years to get an appropriate diagnosis even in the midst of all this increasing awareness (2013), and still it was a battle to get all the “experts” on the same page.  A generation ago, he would have been overlooked, diagnosed with something else, or not at all.  “Bright but unpleasant” maybe.  And he would have been worse off for it, I have no doubt.

But my bigger issue with the “epidemic/emergency” narrative is that it’s flat-out insulting.  Even when the alarmist moms leave mention of vaccines out of their rallying-cry, they’re still pushing this notion that Autism is a disease, a horrible thing that crops up and eats people (read: through vaccines) and must be stopped.  They talk about how much suffering Autistic people endure because of their Autism, they talk about what a drain Autism represents on public resources—the costs to educate, medicate and maintain them.

As a mother of a person with Autism I can speak for exactly one person with Autism (and that only a step removed, and in translation), but the suffering that my son and our family have experienced firsthand is not caused by Autism.  His (and our) suffering comes from misunderstandings; it comes from prejudice and a dearth of resources and opportunities, things which result in the marginalization of an otherwise healthy and happy person who happens to be different from his peers.

Likewise, when these alarmists bemoan the “astronomical costs” of Autism to our communities, our schools, what they’re really saying is that we should protect the status quo—that cookie cutter approach to education and society at large—rather than invest in new paradigms, new ways to teach and employ and treat and engage, ways that recognize and embrace neurological diversity.  They are saying people with Autism are too much trouble, and need to be snuffed out.  That’s ableism, at best (although I think there’s another word for it)—and yeah. I have a problem with that.

Last month I had the honor of being featured in Sapling, the weekly newsletter of Black Lawrence Press.

Sapling is a subscription-based newsletter dedicated to showcasing small presses and journals (details and subscription options can be found here.)  It’s an excellent resource for writers that includes open submission calls, interviews, and more. My interview as RwA founding editor is reprinted below, with permission.

Sapling: What should people know who may not be familiar with Riddled with Arrows?

Shannon Connor Winward: Riddled with Arrows is an online literary journal dedicated to metafiction and metapoems (ars poetica), and writing that celebrates the process and product of writing as art. We are zealously writer-friendly: we offer a modest payment for contributors, a super-fast turnaround on fee-free submissions and—when possible and warranted—a personal note for rejected work.

 

Sapling: How did your name come about?

SCW: The journal takes its name from “Poetry,” a poem by Pablo Neruda:

“…and I wrote the first faint line,
faint, without substance, pure
nonsense,
pure wisdom
of someone who knows nothing,
and suddenly I saw
the heavens
unfastened
and open,
planets,
palpitating plantations,
shadow perforated,
riddled
with arrows
, fire and flowers,
the winding night, the universe.”

 

SaplingWhat do you pay close attention to when reading submissions? Any deal breakers?

SCW: Riddled with Arrows exclusively publishes metafiction/poetry and writing about writing. You could submit the most stunning piece of writing we’ve ever read, but if it is not about writing, or at least self-referential in some way, we can’t use it.

Sapling: Where do you imagine Riddled with Arrows to be headed over the next couple years? What’s on the horizon?

SCW: Right now we’re working towards sustainability. Riddled with Arrows is a passion project that is entirely writer-funded—we have been blessed with a wide network of writers and linguaphiles whose financial support has launched us into our second year—but we are hoping to generate enough in-house income to keep paying contributors for years to come, and maybe even raise our contributors’ rates.

Content-wise, we are very interested in the interactive nature of web design as it can be applied to literature.  We’ve been dabbling in hypertext and embedded effects that enhance the reading experience—we definitely want to do more of that.  The focus of Riddled will always be the writing, but we’ve got some fun interactive projects in the queue.

 

Sapling: As an editor, what is the hardest part of your job? The best part?

SCW: The hardest part comes at the very end of the selection process when I have to choose which of my favorites to put in an issue and which to set free.  It’s always painful to say no to something wonderful that just doesn’t fit, for whatever reason. The best part, though, is seeing that finished product, and admiring the way all the selected works fit together to complete an issue. Particularly when Ro, our Design Editor, starts working her magic to make the words come alive on the site–it always surpasses my original vision. With all of the administrative work that goes into producing a journal, even an online one, it’s easy to get overwhelmed and lose sight of why we decided to do this—but that moment when it finally comes together makes it all worthwhile.

 

Sapling: If you were stranded on a desert island for a week with only three books which books would you want to have with you?

SCW: An anthology of world poetry, a blank notebook, and the fattest dictionary I can find.

 

Sapling: Just for fun (because we like fun and the number three) if Riddled with Arrows was a person what three things would it be thinking about obsessively?

SCW: Which journals are opening/closing to subs this week, a better word than “perspicacious” in the penultimate line of that poem, and whether coffee is the source of or the solution to all these strange somatic symptoms…

 Shannon Connor Winward is the author of the Elgin-award winning chapbook, Undoing Winter and winner of the 2018 Delaware Division of the Arts Emerging Artist Fellowship in Literature. Her work has appeared in Fantasy & Science Fiction, Analog, Lunch Ticket, The Pedestal Magazine, Minola Review, The Monarch Review, Qu, Literary Mama, Rivet, and elsewhere.www.shannonconnorwinward.com
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