Conserving Spoons

I didn’t know I needed to read this today until I read it today.

Musings of an Aspie

If you aren’t familiar with “spoons” in the context of disability, take a few moments to read Christine Miserandino’s landmark piece on Spoon Theory before reading this post.

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Spoons, by nature, are a limited resource. They’re replenishable, but not on demand. Sometimes we get a new supply each day and sometimes we have to ration out spoons over many days before our supply is restocked. And there’s no spoon store, so forget going out to buy some if you unexpectedly run out.

Conserving spoons is an essential skill. The most obvious way to conserve is simply to ration. More things to do today than you have spoons for? Eliminate some stuff!

That works fine when your day has lots of padding. It’s relatively easy to cut out things like “go out for lunch with officemates” or “participate in 500-comment Facebook conversation.” You probably won’t miss them much. But what…

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and it’s April again

Because I don’t have the level of fight in me right now necessary to compose an entirely new post on a subject I’ve already addressed, and because why waste words when I’ve already spent them, I’m going to simply link to last year’s post on this date regarding April as Autism Awareness Month.

I will add, for those with genuine interest in making a charitable donation, a couple of links to organizations run by autistics for autistics. The Autistic Self-Advocacy Network, which advocates not for a cure but for services, education, better diagnostics, and acceptance; and the Autism Women’s Network, which is super important because until recently (and still in some outdated pockets of academia,) it was believed that autism was only even possible in concurrence the XY chromosome, and it is only slowly becoming understood that female autistics have needs and challenges different from those faced by their male-presenting peers. There are other organizations as well, many of them locally-run programs specifically aimed at providing employment services and executive function education. Never again say that while Autism Speaks may not be ideal, they’re the only game out there and it’s better to give your money to them than to do nothing. Giving money to them is definitely worse than doing nothing, and there are other options.

no more – a letter to suzanne wright

“They need to know that while it is absolutely true that there are Autistics and their families in desperate need of immediate support, and that there is indeed an urgent need for both short- and long-term plans of action for them, they are not to be feared.

“They need to know that autism is only a death sentence if we continue to allow people like you to spew rhetoric like this from on high – rhetoric that demonizes and dehumanizes our loved ones, telling them that they are a tragedy, a burden — a thing to be feared rather than people to be included, supported and loved.”

A rousing call from one mother to Autism Speaks. No more.

a diary of a mom

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My girl cracking herself up with scripts last night

I was once asked, “If you have so much trouble with the fact that Autism Speaks uses the words “disease” and “cure” in its marketing materials, what would you have them say instead?”

I thought about it for a moment, and said, “Well, I suppose I’d like them to implore the public to help us find ways to mitigate the disabling aspects of autism while recognizing and celebrating its more positive attributes.”

My questioner cocked his head. “Okay, so how does that read on a sign?”

I’ve never felt more awkward (this is a lie, but go with it) than when I answered, “Celebrate diversity! Mitigate Disability!”

I recognized the folly of my attempt at copy writing long before he said, “Wow, you suck at this.”

He was right. I do.

Because for me, trying to reduce autism awareness / education / advocacy…

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not as manic as I sound, I promise

We’ve been saying for a while that October was going to be an interesting month around here.  I don’t really know if that was the right way to put it, or if it was saying enough.  Tim is away, has been for nearly a week now, at his big yearly SCA thing in California.  The spawn left on Monday to join his grandparents in traveling to a family wedding in New York, gone until next Tuesday.  It was going to be more interesting, because I was supposed to be leaving on Saturday for eight days to tour the Midwest with my choir.  The two of them fending for themselves for a week was going to be… interesting.  And me in the constant company of thirty near-strangers for eight days, away from my safe zone and my routines and my decompression time – there’s another word for what that would have been.

As it is now, the tour will only stretch over the weekend and I’ll be back home just before the boys instead of nearly a week after both of them, but this is still a big deal and it has meant certain arrangements had to be ironed out regarding the pet situation (nothing so straightforward as asking someone to come by the house a few times and make sure they have food and water.  Not with our dogs, not under the circumstances.)  It also meant we had to spend money we could ill afford to spare renting a car for the week while Tim is gone, since the Mirage is sadly beyond repair and we haven’t yet come to a permanent solution to that.  But practical considerations aside, this is a bigger deal because, well.  I’m autistic.  Pretending that the whole idea of this trip isn’t freaking me the hell out for all of the reasons would be disingenuous.

To be clear, I’m excited about it in more ways than just the excitement of terror.  I do actually want to go.  There was a moment, in the beginning, when I could have said no, but I chose to opt in.  Back then (oh, August, how long ago you seem now!) I was enthusiastically blinkered to all of the ways in which this is actually beyond my coping skills, and was only seeing the tremendous experience-broadening and artistically fulfilling possibilities of the thing.  Now I’m just about ready to start hyperventilating.  And this is without even getting into the fact that I’ve never before headed into a concert feeling this unfamiliar with the material.

But in the midst of all of this psychic turmoil, there remains the germ of eagerness to get out there and prove I can do this.  All of this:

Getting myself together and out the door on an out-of-town trip without anyone else standing behind me to make sure I’ve got everything I need (even though I’m always the one performing this function for others and know perfectly well that my powers of organization are up to the task), and to push me if I balk; taking care of all of the administrative preparations necessary to leave the house unattended for a few days; bearing up under the strain and the demands of traveling with such a large group, with a rigid itinerary not at all dictated by me; being among people and their sensory output for so long without melting down; successfully performing this difficult and extensive set of music that I haven’t learned to anything like my satisfaction; belonging to and with this group of musicians in a way that makes me an asset rather than a liability to the whole.

And because this is simply the way my mind works, now that I’ve got too much to do to actually have the leisure to sit down and unravel my thoughts into words, I find myself turning back toward the piece I started outlining about my reaction to The Impressionists.  It’s because I’m preparing to immerse myself for the next few days, rather selfishly, in activities that are entirely centered around my art and my self-expression as an artist, and I don’t do that, like, ever.  Certain mental associations have been called forth.

Tomorrow, if I finish all of my preparations with enough spare time, there may just be an entry not about my thoughts on the film, which I am still sifting, but about my need to justify the right to call myself an artist before I can allow myself to talk about the film as though it says anything about me.

Message from a time capsule

From November 2006 to November 2007, almost exactly one year to the day, I worked at a fabric and crafts store. I quit not because the household no longer needed the money, but because I had learned over the course of a year of suffering that retail is hell on an autistic person. I tried to make it work. They tried too, because I was an invaluable employee. They cut back my hours at my request, offered to let me take breaks whenever I felt overwhelmed (although this was only ever just an offer, and we both knew it.) But I was competent, so they kept asking more of me.

The fact was that I worked best when they let me stick to merchandising, which was what I wanted to do — handling shipments and setting up the displays, with as little customer interaction as possible — but I ended up being the only really reliable person on the register. It was always only temporary, they assured me. They were looking for someone to fill the position permanently so I could get back to what I did best, they said. But no matter how I begged them to stop putting me front-and-center with the customers, and the phone, they just kept scheduling me on register. Because I believe in doing a job well if you have to do it, I worked up the necessary everything to handle it.

But as the weeks and months went by and they never hired anyone who could do a full shift on the register without having some major malfunction, my inner reserves ran low and then dry. I would come home from work with the mental and emotional fortitude to do literally nothing. The house became a sty. I’m not sure what we ate. I only know that when I finally quit, I didn’t even care that I didn’t know how we were going to pay our bills, the important thing was that I had survived. Honest to your deity of choice, to this day any sound reminding me of the alarm of the back room door opening — an inoffensive two-tone beep used by stores and doorbells everywhere — starts my panic response.

Any time my bosses wandered by the front of the store, I was given some extra task to do while manning the register. These never took very long to complete, because I am an efficient worker (and I know I was just dooming myself further every time I finished another project sooner than they anticipated. There was no way they were ever going to get someone else up there who could be polite to the customers and handle the money and also work so quickly with such attention to detail.) But, Cinderella-like, I was desperate to finish my chores so I could get on with my life. Because, you see, nothing gives me the deep soul need to write quite like not having the time or the energy or the freedom to write.

It just happened one day. I was standing behind the counter, no customers in sight, no tasks in my queue. I had my favorite pen in my apron — The Squishy Pen — that I let people use to sign their receipts because regular ballpoint pens never seemed to work on that paper (and they always asked me where I got it because it really is the best pen.) And I looked down and there was just all this blank paper in the cash register. It wouldn’t do anyone any harm if I tore off a scrap and jotted down the bit of dialogue that had just popped into my head.

The next thing I knew, I was coming home every day with handfuls of receipt paper scraps in my pockets, covered in tiny writing.

At the time I thought I was writing slush, just some meaningless nonsense to keep my brain spinning because I never had the energy or the focus to write anything real by the time I stumbled through the front door of my house. I didn’t realize it then; I didn’t have the ability to realize anything until some time after my recovery from the job had been underway, but what I was actually doing was entirely re-envisioning a new direction for my writing and my characters. The “slush” I wrote on tiny bits of receipt paper, in the snatches of free time at the job that nearly killed me, put me on the path that brought me to the novel I’m working on now.

 ———–

Probably around 2008, the gorgeous custom-built desktop PC Tim had put together for my birthday died. (I say died, but what I mean is that I inadvertently fried it trying to do a hardware upgrade myself without reading the instructions thoroughly. Whatever, it’s dead.) It wasn’t a world-ending tragedy because I had a laptop and all of my writing and photography were backed up. The spawn had a computer in his room, and Tim rarely computed in those days, so it didn’t seem like a priority to scrape together the money to repair a machine I had primarily used for gaming and editing my (amateur) photography. The computer armoire, commonly referred to around the house as my “geek shrine” because it was where I kept my Lord of the Rings paraphernalia, got shut up indefinitely with its dead occupant and has mostly stayed that way for the last few years. The doors have only been opened when I’ve needed one of the notebooks I keep in there or when I needed a place to just “temporarily” hide things I had yet to find a place for. And because I live in the desert, it got very, very dusty in there. My Gandalf the White became Gandalf the Rather Beige.

I don’t know what prompted me to do it, but I felt the sudden need this week to open the doors, let the light in, and give the entire thing a proper clean. Most of my LotR figures had fallen over and were buried under a layer of silt. The desk fountain dried up a long time ago. My Loralíenasa doll had a head of frizzy dust instead of shiny black curls. The wheels on my Ducati Monster Dark model could hardly turn.  Almost the entire contents of my pen cup had desiccated beyond use. I took every item out one-by-one and gave it the attention and care it had lacked.

I found little treasures, inadvertently preserved, almost like opening a time capsule. Some of the things I knew were in there. Others took me be surprise. My Paris Metro pass from our last trip to France in ’07. A handful of postcards from the Council-of-Elrond postcard exchange back in I don’t even know when. I have no idea why those were even out and not stored with the rest. The little Maleficent diary that I think Jamie gave me. Actually a whole stack of diaries I’d been gifted and have never used. Business cards from random discovered artists and boutiques. A card, even, from the amazing little crêperie my cousin Michel took us to in Quimper. A floppy disk (a floppy disk!) containing one of the earliest drafts of my first novel. My name tag from the first Writers’ Conference I ever attended. The manual from my teaching internship. The original copy of a published circa high school poem. The temporary tattoos I won for correctly answering Tolkien trivia at the very first official local event to be held about the Fellowship of the Ring movie before it came out.  The pet rock and origami frog the spawn painted for me as Mother’s Day gifts back when he still used to bother. A faded old photograph of my grandfather holding my oldest niece about twenty-five years ago.

And this:

smallscrap

I don’t know how that one small scrap survived, or why. Its fellows all ended up in the trash a long time ago, after being transcribed. But when I opened it up and saw what it was, it all came flooding back. The struggle of my year at the fabric store. The panicked, tired, helpless feeling of slowly losing everything that was myself, clutching at what was left in those moments when I could scribble a few words on these stolen little bits of paper. The fear that if they caught me and made me stop, I might die. The deep soul exhaustion, and the desperation.

Times when I struggle to make the words come and I begin to sneer at myself because how can I be a writer if I’m not actually writing anything, I would do well to take out this little piece of furtive survivalism and remember that at my worst, writing was the one thing you couldn’t stop me from doing. It was the only thing I could make myself do. When everything else that was me was gone, it was literally the last thing they could take from me.

Everything in the geek shrine that was worth saving got a clean and is now carefully back in place. Maybe one day it will even see use again as a computer desk.

The scrap is now in my wallet, where it will stay.