Mar 13, 2013 - Physical Ed, Psychology    1 Comment

Darkness, My Old Friend

The house is so quiet, the ticking clock sounds like drumbeats. Darling Husband is blessed with sleep when and where he wants it. The boys are sleeping again after a mumbled request for help getting the blankets resituated. Even the cat is asleep peacefully in the lining of my motorcycle jacket.

But I’m awake. This is the third night in a row I’ve failed to sleep past 3:00 a.m..

I wish it were unusual.

Sleep and I have a complicated relationship. I remember being insomniac as young as nine years old, so there’s something very deeply rooted in me that conflicts with sleep. In terms of basic biology, my fibromyalgia both requires more sleep to prevent pain and provides pain which prevents me from getting more sleep. The less sleep I get, the more I hurt–it’s as simple as that. I’ve also had a sleep study done, and was told I have the worst sleep architecture the tech had ever seen. At various points, I averaged only 20 minutes a night in REM sleep, which is where restoration takes place. It feels like a well that never refills.

I have a feeling my sleep architecture looks something like the top one.

No fewer than two dozen doctors have told me how important “sleep hygiene” is to beating insomnia. I’ve looked at them with flat eyes and nodded grimly. They don’t understand this at all. I have a bedtime routine, mostly built around a few minutes reading a trashy romance. The easy-to-understand story and comforting predictability help me downshift from my brain’s day speed to one where I can finally fall asleep. I need dark, the white noise of a fan, covers (no matter how hot it is, I can’t sleep without the pressure of at least a sheet or afghan), and luck. None of this is uncommon to autistics, as I understand.

I’m faced with the oceanic expanse of unfilled hours more frequently than I’d like. As many before me have joked, the one thing we really need are more hours of the day to consider all the choices we’ve made in our lives. But I’m fairly happy with the choices I’ve made, so it’s memories that play in my head when the world has put its many stimuli to sleep for the night. I fill that space with books and documentaries. Sometimes I write, or stitch, or crochet, or visit with friends who are also awake. I trying to teach myself not to fear I’ll wake up even more fully. Some theories even say a broken night’s sleep is historically A Thing.

At the root of my problem with sleep and the dark, still hours is this: I listen. Constantly. Hypervigilance is real, and very difficult to control. I listen for children’s cries–even those of babies long since grown. I listen for creaks and shudders, and the hollow sound of a door or window sliding open, even though I know they’re firmly locked. I listen for the crackle of fire, or the sudden crash of disaster, always ready to spring into action. I listen for the faint whine of the TV that tells me Connor’s awake in the night too, perpetuating the cycle of insomnia for another generation. I listen for the phone, and count the souls in peril–physical or mental–and ward against a fateful call.

Right now, I can’t sleep because it’s been exactly one year since Connor was actively suicidal. I lived the months of February and March last year constantly waiting, listening, and wondering this: “Could I get to him fast enough to save him?” This weekend will mark the one-year anniversary of his entry into the partial hospitalization program that saved his life. He’s been at the highest behavior level at school for 21 straight school days. Things couldn’t be more different this March than they were last March.

But my body doesn’t know that. My body remembers that, when the last snows come and go, and the ground and air are saturated with moisture and possibility, I must remain alert. I can’t afford to sleep, the memories embedded in my bones say. This is the time you need to watch, listen, wait. Fear. Hope. Pray. I have other memories seated deeply in my body too, ones that make me tense in May more than 20 years after my sexual assault, or the tension that rides me on and off in the summer, when the heat triggers memories of my helpless, hopeless season a few years back. My mind can fold things away, but my bones and flesh remember.

So sleep and I are more sparring partners than friends, but I’m okay with that. I don’t get much solitude in my life, and insomnia certainly provides that in abundance. And maybe the lesson is that it’s not worth fighting with stubbornness and medication and “sleep hygiene.” This is me, and I don’t sleep like normal people. What do I get for it? Memories long buried, the surety that everyone I love is safe for tonight, and the intimate knowledge of the heart-deep chambers of night’s darkness.

When Spring Isn’t Spring

The sanctuary of White Bear Unitarian Universalist Church (photo by Pete Seeger (no, I don’t know if it’s *that* Pete Seeger)).

My favorite thing about my church is the massive wall of windows in the sanctuary. They look out on the woods of oak and birch that surround one side of the building. I always make sure we’re sitting on the side that looks out that magnificent window. It’s the thing that most settles me into a sacred state of mind.

I love that my church home gives my family and me the community of faith that was the backbone and most important legacy of my upbringing in the Methodist church, while still embracing my personal faith in nature-based Wiccan pagan theo/thealogy. And the window is like the lodestone in my compass of the year, where I watch the parade of seasons caught in the same frame.

For a few weeks, I’ve been pointing out to the boys that the gusty winds were blowing off the last of Fall’s dead leaves to make room for the first Spring buds. But this week, I was so stunned by the apparent lack of progress in temperature and Spring-like disposition, I was moved to write a poem. (It may be terrible; I hardly ever share my poetry, so I don’t have a good sense of how it rates.)

Spring suffered a setback today.

Flurries fell and danced like dervishes

      in the parking lot.

Cold crept under my soles and

      froze my winter-pale toes.

 

Birch trees that, only seven days ago,

      seemed ready to move their magic

            above ground,

      now look tightly shuttered,

            their yellow-green hazy life still locked away.

 

This frigid season will visit a bit longer,

      and feels quite comfortably at home

though its hosts wish it long gone.

 

Spring,

      waiting politely in the driveway

            for its turn in the guest room,

must wait.

When I was in college, I had the great good fortune to see Kurt Vonnegut, Jr. speak on campus. He was as hilarious, irreverent, and insightful as his books. I wish I remember more of what he discussed, but just one thing has survived the years and leaks of memory.

He said we have our seasons all wrong. January and February, those are really Winter, when it’s cold as hell, he said. And May and June are really Spring, that glorious warm, flowery season. July and August are really Summer, when it’s hot as hell. And September and October are really Fall, all crisp and fruitful and wonderful.

But March and April aren’t wonderful and flowery. They’re cold and rainy and squishy and miserable, which isn’t our idea of Spring at all. But what the Earth is doing in those months is necessary for the glory of Spring and Summer to follow. He called it The Unlocking. And November and December aren’t really Winter–they’re frigid and gusty, without the beautiful white covering to hide the brown shades of dead grass and bracken. And that season, Vonnegut said, the one that protects the earth from true Winter, is called The Locking.

Perhaps the reason this explanation is the only thing that’s stuck with me from his visit is that it’s the most sensible description of the Wheel of the Year I’ve ever heard. March isn’t really Spring, and the sooner we stop expecting it to be, the happier we’ll all be. This is when the Earth unlocks itself for magic. Suddenly, the rain and sleet, the slush and melt, all seem much more tolerable.

Fix the Break

A week or so ago, I had a Brilliant Plan (TM). We’re making arrangements to take the whole family, our two sons included, to Origins this year. I’m beyond excited, but there’s a lot of apprehension there too. It’ll be the boys’ first con, and the first one I’ve been able to attend in several years.

It’ll also be the first con I’ve attended since I’ve known about my autism, and I expect that to be a revelation on a number of different fronts. I’ll be more attentive to the waves of sensory info coming in, and more patient with my preoccupation with the textures and graphic design of the costumes and games I see. I’ll understand why the exhibit hall and the crowded hallways between events take such a toll on my patience and energy. I’ll be more aware of how my autism affects my user experience of new systems and products. And I’ll be more mindful of how the chaos of the con environment uses up my available energy, focus, and physical reserves.

In the past, if I needed a sensory break from the crowds and chaos of large gaming rooms and the overwhelming stimuli of the exhibit hall, I had to schlep all the way back to my hotel room. Once there, the odds of actually returning diminish rapidly. When I finally stop moving so much, the tidal wave of pain and sensation I’ve been holding at bay swamps me, and I realize how much I’m hurting and tired. I can’t even think of going back to the convention center until I’ve had significant rest after that. It hurts to miss valuable time with friends I don’t see the rest of the year, but it hurts more to keep moving, to keep fighting my environment.

This year, I’m trying to do something about this. I’ve submitted proposals to both Origins and Gen Con–the two conventions I’m planning to attend this year–to establish a Sensory Break Room for people who are physically or mentally challenged by the rigorous environment of the con.

Part of this is wholly selfish. I don’t want to have to leave the convention center when (not if) my son needs a sensory break. I don’t want to have to go all the way back to our hotel room, where I know I’ll have fights over whether and when we go back, and why we don’t just stay and play XBox or something just between ourselves. He’ll be anxious and overwhelmed, literally by the amount of fun and multitude of choices available. And I don’t want to fight about whether we spend time at the place we came to spend time at.

The other part is more generous. If people like my son and I could really benefit from a room near the center of action where we can decompress for a few minutes, thereby gaining a few hours more of “on” time, I know we’re not the only ones who could use it. As people become more aware of neurodiversity, true introversion, and other conditions that make con activities challenging, it seems like the next logical step for adaptive services is to offer a nearby room where folks can go to recharge their batteries. Much as there are now nursing rooms available for moms who take their babies to cons, I think sensory break rooms are the future of necessary accessibility options for con attendees.

But what do I mean by a “sensory break room”? Let me do the negative definition before the positive one. It won’t be a hangout for people who just need a seat. It won’t be a quiet place to play quiet games. It won’t be a craft room for game widow(er)s looking for company. It won’t be a nursing or babysitting room.

The room will be screened off, instead of requiring users to open and close a clanky door. The lights will be kept quite low, probably too low to read properly, but there may be some soft, shifting colored lights to focus on. No music or other noise will be permitted, but a small fan or ionizer will run to provide white noise as an auditory buffer. Nobody will bug anyone else, but neither is it a nap room. If someone falls asleep, the monitor will wake them up after five or ten minutes, and each user will be responsible if they accidentally sleep through an event they’re supposed to attend. I’m hoping that the folks most likely to use it will be generous in bringing some adaptive tools to share–weighted blankets, exercise balls, fidgets, and other comforting objects. 

There won’t be a cost to use this space–I would no sooner charge for access to a wheelchair ramp than I would for access to this room–and its primary function will be as a room to decompress. Even just 15 minutes for most people gets them back another 2 to 3 hours of time to participate in con activities. The importance of this downtime cannot be overstated for making it a successful event for a significant number of people.

I’ve had a very good response from folks on Twitter, Facebook, and Google+, and I’m hoping that enough positive pressure on the Origins and Gen Con organizers can help us achieve a pilot test for this resource. I’m trying to figure out whether it’s possible to get enough con-goers to volunteer for a shift monitoring the room while it’s open (probably 10am-6pm Thursday thru Saturday), or whether I should see if I can get the local Autism Societies to get a few folks who would be willing to work a two-hour shift each day in exchange for a four-day badge. Either way, I’m also trying to pull together some of the best game designers/GMs in the industry to run “reward games” for the folks who put in the time to make this resource work well.

Think about that look–you know the one–when you see someone about ready to meltdown in the middle of the dealer hall, or at a game table in a deafening room of other game tables. No, grownups don’t throw temper tantrums the way kids do, but you can see the tightening in their shoulders, their jaws. Their eyes get wide, flash around to scan the room for exits and clocks to tell when they get to escape. They get snippy, impatient, or they shut down entirely: “My character just goes along with everybody else.”

There’s a way to avoid that happening quite so often. A room to decompress in, to take that break from the light and noise and sights and crowds, can stave off those sudden attacks. There are still kinks and details in the plan to work out, but I hope it sounds like a good idea to enough people that we can start to leverage some positive pressure on the con organizers. Whether or not you’re going, please communicate to Origins and Gen Con organizers that you think that this resource is valuable and worth accommodating in the outskirts of the main convention area.

Sometimes you have to break to get put back together. This year, we can provide a safe space for our fellow gamers to do that.

Mar 6, 2013 - Uncategorized    No Comments

Why Be An Activist?

photo-1

Because only people who want to show up, show up. No bad attitudes.

Because by coming together on a specific issue, the group has already self-selected by common interest, so you’re likely to like the people you volunteer with.

Because when people are already there to help other people, they make the best kind of friend.

photo-3

Because you never know whom you’ll meet when you announce your allegiance.

Because you’ll never feel as appreciated as when you share your unique talents for a common cause.

Because if you can, you’ll be standing up for yourself and someone who can’t.

Because you get to tell your own story, and who doesn’t love to talk about themselves?

Because it restores your faith in beauty, truth, and love.

photo-4

Because smiling while you protest makes the opposition nervous.

Because your experience and your presence are unique, meaningful, and needed.

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Because the halls of power belong to you.

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Because revolutions have laughter and dancing and good snacks (or at least they should, if they’re good ones).

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Because when you’re in a crowd, marching and chanting with one voice, you are unbelievably powerful.

Pride at Capitol

Because there aren’t many activities in life where everyone wins equally, no matter how much they put in.

Because you don’t have to be good to do good.

Because there’s a good chance your parent, grandparent, or ancestor wasn’t allowed to speak out like you can.

Because, while the moral arc of the universe bends toward justice, it ain’t there yet.

Because we all do better when we all do better.

Show and Mattel

I know the Internet is designed to inspire fury. That hasn’t been the majority of my experience with it, but lately, it seems determined to correct my underestimation of its rage-inducing qualities.

So before I proceed with this post, please go read this article about why Mattel thinks moms don’t “get” toy cars. Go ahead–I’ll wait for you.

Thanks for taking the time to do that. You may or may not be seething with anger right now. If you’re not, that’s okay, but I’m going to explain why I (and several other mothers I know) are. Let me put on my sherpa hat.

PROBLEM #1: THERE’S A VP AT MATTEL FOR “BOYS’ TOYS AND GAMES.” I’m the mother of two boys, and I’ll be the first to say that they play with different toys, in different ways, than many girls would. Griffin was about nine months old when he distinctly said “Vroom” to a squishy car toy which none of us had yet bothered to introduce to him by name or sound.

But I’ve been told I “play wrong” for a girl since I was two years old. Imagine that: TWO YEARS OLD. That’s the year I saw Star Wars on a drive-in movie screen and was hooked for life. All my friends in preschool were boys, because they would play what I wanted to. In sixth grade, my teacher introduced me to games of war and strategy, and I was hooked once again. I went on to be the only girl among 23 boys in the Strategy and Tactics Club in high school, and I was very happy there. I never felt left out or isolated because I was doing what came naturally to me.

Even as an adult, I’ve mainly played games with men, but the many women gamers I’ve played with over the years were as viciously cutthroat as they needed to be to succeed. If anything, we were more terrifying because we collaborated to do awful things, and we needed to set down our needlework or knitting to wipe out whole parties of monsters or even the roof of a building once. “Knit one, purl one…natural 20…I kill it. A lot.”

There’s no such thing as “boys’ toys” and “girls’ toys.” There are just boys and girls who play with toys. Whichever ones they pick, they’re doing it right. It’s okay to appeal to some of the differences between the genders, but the pink-and-blue-washing needs to stop NOW. If you want to see how a company can tailor toys for greater appeal and accessibility to one gender or another, consider the upcoming “girls’ line” of Nerf toys, which feature ergonomic adjustments to make them easier to use, as well as styles that correspond to popular culture models like Katniss and Merida. Disney should follow their advice with the Marvel line–I know a whole lot of girls and women who will happily fork over for some good Marvel toys, games, and apparel.

PROBLEM #2: HE FELT THE NEED TO EXPLAIN TO A ROOM FULL OF MOTHERS WHY THEY WERE DOING THEIR JOB WRONG. There are many ways mothers do do their jobs wrong, and society isn’t shy about telling us so. We know we’re not perfect, but unless you’re the sort of mom who’s likely to end up in court, you’re trying very hard to do your best. The days of the pretty moms who won’t lie down on the floor in their crinolines and frilly aprons to play with kids of both genders are past. I play with my boys, and I play hard. I certainly don’t need a toy executive to tell me how to make my kids happy or have a good time.

Moms are bad enough on themselves and each other. Tiger Moms, Princess Moms, Geek Moms, Stay-At-Home Moms, Working Moms…we’re all being told we’re doing it wrong, that our kids will end up in therapy for sure if we don’t buy them the right things and hover over them like paranoid black helicopters every second of the day. Petersen’s voice shouldn’t be in this discussion at all, let alone lecturing a room full of “mommy bloggers,” whatever the hell that sexist, reductive label means.

PROBLEM #3: HE THINKS THERE’S ONLY ONE WAY TO PLAY WITH TOY CARS. This one particularly burns my ass, because I know from experience that he’s wrong. When I was a kid, I played with toy cars by lining them up in perfectly symmetrical, parallel rows, sorted by shape, size, and color. Then my sister would walk through the lines like Godzilla, kicking them to kingdom come. And then I would line them up again in different patterns. I picked my favorites by the way they felt in my palm, my closed fist.

I realize that much of this comes from my autism. But I know I’m not the only one who didn’t play smash ‘n crash all the time. In fact, most of the boys I knew didn’t play with their favorite cars at all–they set them on a high shelf where they’d be safe and beautiful. Petersen’s model of play is a marketer’s one, not a player’s one. If you smash your cars all the time, your parents have to buy you new ones all the time. Planned obsolescence is not a game.

PROBLEM #4: HE DOESN’T UNDERSTAND WHY KIDS WOULD RATHER PLAY WITH OTHER TOYS. Finally, Petersen doesn’t understand why toy cars are less relevant today. The problem lies in a few areas. If a kid wants to pretend with cars these days, why would you want to drive a four-inch replica across the berber carpet when you can boot up the XBox or Playstation or 3DS and actually feel like you’re driving a real car? Why play with a pre-made car when you can build your own models?

Cars have the same problem I see occasionally with “action playsets”: they’re single-use toys. There are only so many ways you can play with a toy car, or with the Spiderman 3 Sandstorm Action Playset. You basically get to recreate one storyline, and then you’re done. The reason action figures and dolls are more popular is because you can tell infinite stories with them. An imaginative kid (i.e., all of them) doesn’t even need every action figure, because one character can be many characters. LEGO offers another solution to this problem by offering single-use builds with infinite rebuilding potential. Who wouldn’t rather play any story you can think of, rather than “They drive somewhere. Along the way, they crash into something”? According to child development expert Penny Holland, single-purpose toys are far more damaging to our kids’ minds than toy guns. Think about that for a second.

The graph in the Bloomberg article suggests an even more interesting quandary to consider: There’s a gender gap in board games too. According to their statistics, 46 percent of girls between ages 6 and 12 list board games as their favorite toy, as opposed to only 33 percent of boys. I’d be interested to know which games girls are playing, because we’re past the days of the Barbie Dreamdate Board Game (which I played, I’ll have you know, and ended up marrying Poindexter in real life). 

Board games aren’t even strongly marketed, as far as I can tell, for one gender or another. RPGs (tabletop, video, and online) are, though, and I’d be interested to see a more nuanced breakdown of a wider variety of games. I’d also like to know whether the gender gap among young girls and boys who play board games correlates to the education gap–there may be room for board games to help boys catch up on certain academic and social skills that they aren’t getting enough support for in schools that have to teach to the test.

All this fury has direction. We don’t have to settle for executives trying to sell our kids crappy toys. We know what our kids like, and we should put our money where their preferences are. Play has the capacity to teach and to heal, as well as to entertain. As parents, we shouldn’t settle for anything less.

Witchin’ in the Kitchen

I wrote this essay almost 15 years ago, deeper in the dark of winter than I am right now. But at a friend’s request, and because every word of it still rings as true today as it did when I wrote it. The only thing that’s changed in all this time is that I’m a better, more inspired cook than I was when I was just starting out. I’ve delved into ethnic cuisines, and I’ve learned to trust my senses and my reading skill when combining ingredients. That’s another kind of magic: the confidence that comes with age and practice. But that’s a different blog post.

*****

The time for ritual is at hand. I stand in the place of my power, tools of the magic I will work laid out before me– silver, wood, and steel. Fire and water are at my command, earth and air held back by my will. In this time, I will draw on the forces of creation, shaping elements. Here, I am an alchemist, a hand of the goddess herself.

For I am a kitchen witch.

I embrace this title proudly, despite lingering associations with the silly wizened dolls on brooms available at most craft fairs. As a name, it covers it all–my faith, my pleasure, the locus of my greatest power. No hallowed circle, no standing stones could imbue me with more strength or more possibilities. One friend firmly maintains that, when it comes to the Craft, if I can’t do it with Morton’s salt and a wooden spoon, it can’t be done.

While I am not so bold as to commit to such a statement myself, the power of the kitchen, and what it summons and creates, is not to be denied. Though I began down the path of Wicca in solitude, I learned the magic of cooking as all good magics are best learned : at the elbow of a wise and laughing grandmother. The rules were simple. Wash your hands. Clean as you go. Read the whole recipe before you start. Measure with care. And, most importantly, share the joy as often as possible–that’s why there are always enough beaters and spatulas and bowls for everyone. If you abide by that last rule, no spills or scorches can spell failure. Just vacuum up the oatmeal, wash the egg out of your hair, and laugh about the fun you had.

I know, it doesn’t sound much like the holy tenets of any faith, or even much of a New Age philosophy. But the results simply could not be missed. Even as a child, I recognized the phenomenal power of what we created in that tidy sanctuary of counters and appliances. We’re talking full sensory miracles here, folks. The smell hits you when you walk in the door, enveloping you in a warm blanket of knowledge that, here, you will not go hungry. Someone cares enough to spend time and energy to refresh and nourish you. That simple understanding, at the most primal level, cuts loose the weight of the world, letting your spirit rise. The sight of flushed skin and flour smudges brings light and laughter, and sneaky little dips into aromatic steam and unfinished delights allow you to keep a greedy secret that heightens anticipation. All these things seal the feeling of community as you finally join in the simple pleasure of sharing tastes, sensations, and satisfaction, even if only with one other person. No wonder “communion” takes place with food in so many religions.

But I have to be honest about something, and it’ll probably blow the lid right off any sort of “kitchen witch mystique” I may have managed to build. I am no gourmet. I’ve never taken a cooking class. Those brownies which my friends and co-workers steadfastly maintain are the best they’ve ever tasted? Betty Crocker, Fudge Supreme, $2.49 with coupon. That chili whose aroma wafts out like tickling fingers when I open the door on a cold winter night, drawing my husband in all the quicker? Packet of spices, canned beans and tomatoes. Simmer on low for 20 minutes. That’s it. And I’ve never made a secret of it.

The rave reviews continue, with every potluck dish and party treat. Is it because I always stir clockwise, letting goodwill flow into the smooth batters and sauces? Most likely not. And I’d feel terribly silly if I sprinkled water and invocations over my electric oven to ward off burnt bottoms or mushy middles. My power as a kitchen witch, so far as I can tell, comes solely the enjoyment I take in doing something simple that will produce happiness in others. As I skim my finger down the well-worn page of my favourite cookbook, I’m already thinking of the smiles and hums of pleasure that my “magic potion” will summon into existence. As I clean shortbread dough from my utensils and fingernails, I can already hear the surprised exclamations of delight ringing in the doorway as visitors first hit that gorgeous wall of aroma. And hours later, after the cupboards are closed and the counters are clean, I can still smell the lingering scent of crushed herbs and sweet essences on my fingers, and I fold them beneath my nose and breathe prayers of thanksgiving for the chance to bring joy to those I’ve fed.

So I may not always remember all the poetic invocations when I call the Watchtowers in a Circle, but I remember the favourite food for every loved one in my life, and most of the recipes. And so I might be dreadful at keeping a proper herbal grimoire stocked–my spice racks are the envy of all who survey. I consider myself well on the road to the Lord and Lady’s wisdom, because I know the seat and value of a generous, abundant power within myself, one of the greatest signposts on everyone’s spiritual journey. And when I get there, I’ll be sure to have a dish to pass.

Mar 1, 2013 - AV Club    No Comments

Cover to Cover

I absolutely adore cover songs (originally done by one band, then performed by others). In fact, I’ve got a whole playlist full of them on my phone. Whether they’re irreverent reinterpretations or faithful homages, the combination of one band’s music and another band’s sound is an alchemy that often amounts to more than just the sum of its parts.

A lot of them come from movie and TV soundtracks, because often music directors know which songs they want, but the licensing costs of getting the original would cost the whole movie’s music budget. Lots of great Beatles and Bob Dylan songs make it into shows, but they’re almost always performed by someone else. Heck, even the movie Singin’ In The Rain is basically a movie full of covers. The downside of this, though, is that many soundtrack songs aren’t available as singles

If you know someone else who enjoys messing around with music, a purchased playlist on iTunes would make a pretty awesome gift (though not all songs are available there; some are from a few rare CDs I have).

Dancing Queen by Luka Bloom (orig. ABBA)

Under the Milky Way by Strawpeople (orig. The Church)

Sea of Love by Tom Waits (orig. The Honeydrippers)

Flume by Peter Gabriel (orig. Bon Iver)

Love Song by 311, from 50 First Dates (orig. The Cure)

Enjoy the Silence by Tori Amos (orig. Depeche Mode)

The Ballad of Peter Pumpkinhead by Crash Test Dummies, from Dumb and Dumber (orig. XTC)

Please Please Please Let Me Get What I Want by The Dream Academy, from Ferris Bueller’s Day Off (orig. The Smiths)

So. Central Rain by Hem (orig. R.E.M.)

When Doves Cry by Quindon Tarver, from William Shakespeare’s Romeo + Juliet (orig. Prince)

She’s Not There by Neko Case & Nick Cave, from True Blood, S4 Ep1 (orig. The Zombies)

Toxic by Nickel Creek (orig. Britney Spears)

You Keep Me Hangin’ On by Kim Wilde (orig. The Supremes)

Just Like Heaven by The Watson Twins, used in True Blood S1 Ep7 (orig. The Cure)

I Melt With You by Jason Mraz, from 50 First Dates (orig. Modern English)

Higher Ground by Red Hot Chili Peppers (orig. Stevie Wonder)

Head On by The Pixies (orig. The Jesus and Mary Chain)

Bizarre Love Triangle by Frente! (orig. New Order)

Hurt by Johnny Cash (orig. Nine Inch Nails)

Everybody Knows by Concrete Blonde, used in Pump Up The Volume (orig. Leonard Cohen)

Dead Souls by Nine Inch Nails, from The Crow (orig. Joy Division)

Lips Like Sugar by Seal, from 50 First Dates (orig. Echo and the Bunnymen)

Wild Horses by The Sundays, used in Buffy the Vampire Slayer S3 Ep20  (orig. The Rolling Stones)

Pale Blue Eyes by R.E.M. (orig. The Velvet Underground)

Sweet Jane by Cowboy Junkies (orig. The Velvet Underground)

I Will Survive by Cake (orig. Gloria Gaynor)

Feb 28, 2013 - Psychology, Social Studies    8 Comments

Lock And Key

Friday is the Autistic Day of Mourning, a day to honor the autistic people who have lost their lives to the desperate or careless actions of parents and guardians, or to the crushing weight of the sensory world that seems inescapable by any other means but death.

As long as myths and misinformation are spread about what life on the autism spectrum is like, there will continue to be caretakers who feel that autistics are less than human, and autistics who feel that every door in the world is shut and locked against them. This is my story of those doors and locks, and the keys that turn up in the most unexpected of places.

I wrote this for an event around Mothers’ Day, called Listen To Your Mother. (It may have been too weird for them.) But I really wanted to share these words I’ve crafted, and the occasion to commemorate those who never found their keys seemed fitting. I hope it unlocks something for you, too.

________

Parenthood is all doors and windows, keys and locks. Change blows them open and slams them shut. Heat and grief swell the frames so they stick stubbornly. Time and anger jam the pins and squeak the hinges. Then suddenly, a word, a fall, a breakthrough, and we stumble over the threshold.

My son’s autism diagnosis was the key to a lock I didn’t even know existed. Kindergarten was rough, rougher than it needed to be. Connor talked as fast as he thought, ideas rushing out so fast his little mouth garbled and stammered over the vocabulary of a high schooler. He knew the names and origins of every superhero and Star Wars character, but related them with so much detail, kids his age gave up and walked away. He struggled to function in the constant noise and color of the classroom, where he could never settle and instead slingshotted among activities and classmates.

The other kindergartners didn’t understand, and responded with cruelty beyond comprehension. Five-year-olds on the bus home at half-day told him they would beat him like a piñata until he broke open. They said they would come into his room and set his bed on fire. They hit him in the face with ice balls until he needed stitches. And I cried as I scrubbed the blood out of his little winter coat, as I held him in the night after dreams that woke him screaming. As I filed the papers to transfer him to somewhere safer.

We got called to a meeting within the first month at his new school. “We’ve noticed some things we’d like to talk to you about,” the counselor said. We feared a repeat of the last school’s message: “Your son is a discipline problem. Fix that.” But in that room with his teacher and a staff we barely knew, they slid a list across the table to us that told the story of our son.

My husband and I laughed. Out loud. It startled the school folks to see parents erupt in gales of hilarity and recognition at an inventory of symptoms. But there it was, clear as day on that paper: every strange, wonderful, frustrating, inexplicable thing that our son did. “It’s okay,” we tried to reassure them. “This is the Book of Connor, the pattern we couldn’t figure out. Until now, we thought it was crap parenting.”

It has a name, they told us: Asperger’s Syndrome. “How wonderful,” we replied. “If it has a name, it’s a language we can learn.” We shook their hands, agreed to meet again soon to talk about how to help him. We thanked them, over and over. “Thank you for giving us the key to unlock our son.” I went to the library, checked out armloads of books, and built a fortress around myself, so I could read us all out of the dark.

But the key we had fit another lock, too. It fit a lock in me, a lock I didn’t know I had. His patterns were my patterns, or had been as a child before I learned to hide or work around them. I saw the world in stories too, and had visions clearer than eyesight from the books where I went to hide. I fixated on things without even trying or wanting to. And when it was too much, only dark and quiet and heavy blankets and the rushing, patternless sound of a fan could steady me on the tightrope again.

His lock, my lock, they’re the same. My son is autistic. I am autistic. We are both autistic together. We share this key, and we’re unlocking doors I never dreamed I would pass down to my child.

Grownups say they wish they knew then what they know now. They have no idea.

My son’s lock is my lock. His key is my key. Every door it opens, it opens for him and me. And I walk that terrible, glorious road of discovery with him again like it’s the first time for us both.

Feb 21, 2013 - Psychology    10 Comments

Not Worth The Ink

This’ll be a flash blog post, because I’m flash freaking mad.

I try not to get triggered into red-haze, blinding rage by every awful thing about autism that comes across my Twitter machine. But this was just too much to ignore.

You wish your kids had cancer?! And you’re willing to say that? Not just in the privacy of your own twisted mind, or the quiet of a deep night of self-loathing insomnia, or even to a spouse who might recoil in disgust that you would ever give voice to such a repellent thought, but ON THE COVER OF A GODDAMNED BOOK?!!

Autism is not an illness. It’s not even a disorder–it’s an overabundance of order. Neurodiverse people have difficulty engaging with a world that’s too harsh for their acute senses.

We Are Not Sick.

Autism Is Not A Death Sentence.

But parents like you who hate their autistic children so much, they’d prefer it if they had a devastating disease that requires even more devastating therapies with lifelong effects and increased risks including (most cruelly of all) more cancer, you are a death sentence. Parents like you kill their children because they don’t see the person–they only see the work and therapy and bills and grief. So they push those children under the bathwater and don’t let go. They wrap plastic bags and blankets over the angelic faces of children who are so much more than autistic. Sometimes the parent ends their own lives too, but more often than not, they just shake the Etch-A-Sketch and try to conceive a more “wanted” child who’ll give them the fulfillment of all their dreams.

And your book is going to come up in Google searches. Vulnerable parents, fresh from the shock of diagnosis, will see that title in the results. Some may even buy it from the greedy, vulture-like vanity press that put your despicable words into print. And they will think their child would be better off dead.

You. You did that. To the parent, to the child. You did that.

But you also did one other thing, one you didn’t expect. You made me mad.

ConnorJessSafeSchoolsSee, I’m autistic, and so is my ten-year-old son. We are (and I don’t make such claims lightly) rather amazing. Our memory, our keen senses, our vast imaginations, our complex thought processes, our rapid-fire senses of humor. Our capacity for unconditional love and good work. And we’re friends with other autistics who inspire and motivate and enrich and encourage us every single day.

I haven’t given up a single dream for either of my sons, the autistic or the neurotypical. Why should I? They may achieve those goals in unexpected ways, but they can do absolutely anything in the world.

How do I know? Because I have. I’ve graduated, made lasting friendships, participated in government, found and married my one true love, worked toward justice, invented things, created works of beauty, overcome adversity, and mothered two beautiful boys. I’m autistic, and my life is (sometimes uncomfortably) full of meaningful work and relationships.

ConnorJessAlFranken

Me, Senator Al Franken, Connor, and a fellow healthcare activist

I’ve been doing a lot of work on health care reform here where I live. In fact, I’ve been testifying at the state capitol about the importance of comprehensive mental health coverage as the state designs the new health care exchanges required by the Affordable Care Act (aka Obamacare). City Pages published an outstanding article about the fight to enact the Mental Health Parity law Senator Paul Wellstone fought for from 1990 until his tragic plane crash in 2002. Parity means that medical providers and insurance companies will be required to treat mental health by the same standards as physical health. The article is full of horrible examples of discrimination by insurance companies: a woman with an eating disorder was diagnosed to need an inpatient program by four doctors, and her insurance company, United Behavioral Health, rejected her claim nine times for such reasons as “‘There are also religious groups who fast and that is not psychopathology.’” The woman’s lawyer commented, “‘Imagine telling someone with breast cancer to try harder.’”

Mental health parity looks like it’s finally about to happen. If enacted, it’ll help 114 million Americans, but cost less than 1 percent of the total healthcare expenditure under the ACA. When President Clinton enacted parity for federal employees’ health plans, it actually ended up saving the government money. Parity makes good economic, medical, and human sense.

Someday soon, dear author, your autistic kids will be able to get the help they need without a major fight. The only obstacle to them unlocking their full potential will be you. When they get around you–and they WILL get around you–you’ll be the only one left who needs mental help. Won’t you be grateful for good mental health coverage so you can get over your poisonous, miserable ideas about parenting?

Feb 20, 2013 - Sex Ed, Social Studies    3 Comments

Feminism at the Crossroads

A few times recently, friends have mentioned me on social media as a feminist they admire. As pleased and flattered as that makes me feel, I also get a strong twinge of guilt, or at least conflict.

I don’t think I’m a very good feminist. By the usual standards, I barely qualify for the title. I suffered through one lone Women’s Studies course, in grad school, with much whining and skepticism by both professor and me. I don’t know all the lingo. I can’t take the Pill. You’ll never catch me burning my bra–they were so damn hard to get fitted correctly in the first place.

Okay, that list is pretty unserious, at least in 2013. But I do feel some considerable shame as emails about reproductive choice, equal pay, sexual harassment, gender balance in the media, and any number of other “feminist issues” pile up unanswered in my inbox while I put in hours upon hours on the phone and in the Capitol for rights that may not even benefit me directly.

I want to be worth the faith of those folks who think of me when they hear the word “feminism,” and I want my feminism to be clear in its intent. My feminism sits at the intersection of race and privilege, of sexual and gender identity, of educational and economic advantage, of communication and culture. My feminism is a human right, and it casts a broad net: I become aware of another injustice that touches my feminism because I feel the tug on our common lines, however far away from me it is.

But if your feminism extends so far, what kind of feminism is it at all, you may be asking? If you can find your way, as I do, to issues as diverse as same-sex marriage, teaching multiculturalism, comprehensive health care, rape culture, and the environment, shouldn’t I call it something else? Is my gender the only thing that makes me a feminist?

My answer is no. Women deserve to have their whole voices to be heard. We are more than half of the world population, so if there’s an issue that affects the world, it affects women and we deserve to have a say in it. Women are not a monolith–this gets said frequently, but it bears repeating until it sinks in. We do not all have the same view on issues; there is no such thing as the “women’s vote.” Our circumstances are varied as our bodies.

That said, the common composition and experience women share give us a different perspective than men have, and if we want to build the world to be a more inclusive place for us, our vision has to influence that construction. A quick anecdotal example: My boys were born four years apart. We still had all the baby equipment from Connor when Griffin was on his way, but by way of a mistake and a generous gift, we ended up with a brand-new stroller set to replace our used one. I finished unpacking it and went to set it up for maximum admiration. Remembering the mechanics of our old set, I went at the frame with both hands, but all it took was a flick of my thumb and a twist of the wrist, and it sprang up fully. Instantly, I realized: in those four years, women engineers entered the design room. I’m not saying that men couldn’t design a good stroller. But it felt like a mom who’d wrestled a purse, a crying baby, and a diaper bag spilling its contents into the parking lot had finally had a say in what was needed.

Not every woman is a mom, or even wants to be one. Not every woman will even need that stroller, let alone be able to afford it. Not every woman can even imagine the luxury of letting something other than her hardworking body support the weight of her child for a single moment of the time until that child can toddle along under its own power. And increasingly, many men are partners in parenting who can appreciate one-touch strollers and other magical technology that makes the work of raising a child just a bit easier.

But women experience the world differently than men, and that difference makes us valuable as we search for solutions. Every problem in the world affects women, and we can and should contribute to efforts to counteract problems with our particular set of visions and skills. Strengthening the institution of marriage by making it accessible to anyone who will take that stand for love and commitment benefits women. Teaching multiculturalism to children (and adults) makes us more sensitive and appreciative of the differences, unique histories, and commonalities among people with other races and cultures, which benefits women. Comprehensive health care benefits women’s bodies, as well as improving their ability to participate fully in the economy, to the benefit of their families. And we all live on this planet that changes and suffers and recovers and goes unheeded, like the bodies of too many women who experience the world as a violent place, and they all need healing for life to flourish.

So my feminism will be intersectional. Senator Paul Wellstone used to say, “We all do better when we all do better.” So I’ll work on the issues that resonate with me and my experience as a mom, a wife, a teacher, a bisexual, a pagan, an autistic, a Unitarian Universalist, a white person, a survivor, and the many other people who live inside this woman’s body. One of them is a feminist.

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