“It’s the sound of the unlocking and the lift away / Your love will be / Safe with me”

He recognizes my footfall. He can be awake in his crib for an hour, resting peacefully through absolute cacophony upstairs, but the moment he hears me walk across the floorboards in the living room above his head, he cries out.

I once remarked that he hugs me like he’s Princess Leia and I’m Han Solo and I’m about to be frozen in carbonite and he doesn’t know if he’ll ever see me alive again. On more than one occasion I have joked, when he grabs me by the legs or snuggles into my lap, that he needs to learn he can’t climb back inside me.

About a month and a half ago, he broke my glasses. He’d gotten into the annoying habit of slapping them off my face as I loaded him into his car seat. He really wanted those glasses off of me. He would then look at me fondly and caress my cheek, as though he hadn’t seen my face, my real face, in ages. I think it was a weaning thing. When he nursed, even when he was a very small baby, he wanted to make constant eye contact. Gazing at me in wonder.

I don’t think anyone in the world has ever loved me as much as he does.

I am constantly afraid that something horrible is going to happen to him. A freak accident, when he’s just out of my sight. Awful scenarios, running through my head, all the time. I read the Phillippa Gregory book “The White Queen” last week, and the closer I got to the ending I knew was inevitable, that the queen’s sons would be taken to the Tower of London and never come back out, the more white-knuckled my grasp of the library binding became. My New Year’s resolution this year (and I never make resolutions, so this was big for me) was to stop reading things on the internet that would upset me. True crime, houses burning down with children inside them, longreads about child pornography sting operations. And yet somehow last night I found myself reading the Ted Bundy wikipedia page, half-convinced that there was a serial killer downstairs silently strangling my children and on his way to kill me too. I don’t know if this is normal. I kinda assume that it is and it isn’t. All I know is that I love my children far more than I love myself and I live in constant terror of something horrible happening to them.

So I just don’t understand.

I understand why people, in the comments of some articles I have been unable to pull myself away from of late, want to offer up some small bit of empathy or sympathy to a mother who feels pushed to the breaking point, who feels alone, without support, without hope. I get why people want desperately to create some sort of context, to help prevent, to try to understand.

But I will never understand.

I will never understand how someone could try to kill their child.

I can empathize with Dorothy Spourdalakis right up until she gave her son sleeping pills and then stabbed him in the heart.

I can empathize with Kelli Stapleton right up until she lights the grills in the back of her van.

And then my empathy is gone. And then my compassion disappears.

My son is not autistic, but my daughter is. The emotional abundance I receive from E is not as readily accessible from D a lot of the time. But I have no doubt she loves me. She is able to show me that, through words and deeds. She always has. I don’t know enough about Alex Spourdalakis or Issy Stapleton to speak to their capacity to express connection with their parents. All I know is what the media narratives tell me. They were large, and violent. They were locked in, in their own worlds, a burden. Nevermind reports, firsthand reports I’ve read, from people who have met these kids, seen them talk, seen them play. I do not doubt that these children were more difficult to deal with, on many levels, than my own. But they are your children. They trust you, completely, inherently, from birth. Your job as a parent, more than anything else, is to love and protect your children. Their lives are not yours to dictate. You have no right to decide when and how they will die. When the language we, as a society, use to describe autistic people is language that is othering, dehumanizing, we set up a stage for this to keep happening. When you see your children as a burden, as a curse, as people trapped inside a shell of an illness, as props in your play…that’s the only way I can understand such acts. And with that I cannot, will not, empathize.

When D was a baby, I was shellshocked. I felt an immediate connection with her when she was first placed on my chest, but in the weeks that followed I felt that connection crumble. She was a voracious nurser, wanted to eat constantly, wouldn’t sleep anywhere that wasn’t a lap or a shoulder or a busom. But she wouldn’t tolerate a wrap or a carrier. When I tried to strap her to me so I could accomplish something, anything, she wrestled against me and screamed. Once we got her on some reflux medicine, things got better. But there was still a constant struggle within her that I could perpetually see — her desire to be close to me, so I could nourish her, but simultaneously shuddering and clawing away from confinement. The fervent and almost obsequious love that my son showers me with…it’s not the same as what D and I have. The summer before he was born was a nonstop struggle to come to some sort of detente with her. We screamed. We cried. We hurt each other. I didn’t know what was wrong between us, but despite our epic rows I clung to her. A few days before E’s birth I crawled into bed next to her and we held each other close. I knew it was the last time it would be just me and her together, alone together, as we had been so often for so long. She is my first child. She frustrates me endlessly. She makes me proud every day. A phrase I have seen very often on autism self-advocacy blogs is “Behavior Is Communication”. When D does things that are violent or aggravating or disruptive, I need to stop myself from simply responding to the behavior and instead try to deduce what has led her to that behavior.

Why was Alex Spourdalakis violent? Was it because his mother was subjecting him to biomedical “cure” treatments recommended by her friends Andrew Wakefield and Polly Tommey? Was his gastrointestinal pain a result of bleach enemas? Chelation? I expect we will find out at the trial. But he was trying to tell his mother something.

I will never understand.

Why was Issy Stapleton violent? Was it her reaction against endless behavioral therapies aimed at stopping problematic behaviors rather than understanding what she was trying to communicate? Was it a reaction against a mother that clearly had some need for drama, a mother who posted videos on YouTube of herself weeping and screaming as her daughter comes at her? Trying to tell her mother something.

I will never understand.

Your child is not a bit player in your own personal psychodrama. Your child is not a puzzle waiting to be solved. Your child is a gift, a miracle in every cell of his or her body, even if that body is in some way different from what you expected, what you always thought you wanted in a child. Your child is new and unfinished and essentially defenseless against you. Yes, even a 14-year-old autistic child who outweighs you. You are the parent. You always have options — not always good options, but options. Options better than killing your child who trusts you, who needs you, who is struggling and needs your love and your guidance, not your disappointment and disdain and despair.

I think it is an insult to my friends who are parents to autistic children who fall on the more “severe” end of the spectrum to express sympathy for these women. Thousands of parents are raising children who are very similar to Issy Stapleton and Alex Spourdalakis and would never dream of murdering their kids. We can and should have a discussion as a society about lack of services, lack of supports — but can we please do it independently of the conversation about murdering children? Kelli Stapleton had total strangers on the internet donate money, enough money to send Issy to a residential therapy program for six months. Dorothy Spourdalakis had people from Age of Autism filming in her kid’s hospital room; Andrew fucking Wakefield at his bedside. These were NOT women who were toiling away anonymously, penniless, without any resources or supports.

As a parent, it has been relatively easy for me to find blogs of other parents where we can offer each other support, to find accounts in the media that promote sympathy and understanding towards parents of children with autism. I agree that in our day to day, non-internet life, it can be hard to find the support we need. But the overall narrative in the media is one that gives parents a voice. Conversely, I have found it is extremely rare to find blogs or articles that are written from the point of view of autistic adults. Really. It wasn’t until I found Shannon Des Roches Rosa’s blog (through a search about iPad apps, of all things) that I was introduced to the voices of autistic adults from all points along the spectrum, from Ari Ne’eman at the “high-functioning” end to Amy Sequenzia at the so-called “low-functioning” end. So many parents of autistic children believe that organizations like the Autistic Self-Advocacy Network are made up solely of Aspies who don’t represent their non-verbal or aggressive child. They are WRONG, and the reason they are wrong is because they simply haven’t seen it, seen what their children are possibly capable of as adults. People like Kelli Stapleton and Dorothy Spourdalakis see their children’s autism as a life sentence, not only for their children but for themselves. Of course that makes them depressed and anxious, and in some cases, in people who already have their own issues to deal with, personality disorders, whatever it may be…they snap. And what ASAN and other adult autistic advocates and even many parents like myself are trying to express is that we cannot offer our sympathies to those people who snap, because their actions do nothing but perpetuate the currently rampant idea that autism is an unbearable curse for parents and children. That devalues and dehumanizes autistic people. The most common response to these tragedies, it seems, is to focus on the experience of the parent, try to find what possibly triggers their murderous behaviors. I think it’s more important to change the focus from the parents to the children, emphasizing how our society’s general perspective on autistic children is a dehumanizing gaze that is so pervasive that it warps how many parents view their own children. As a parent, I struggle, every day. But I have to always keep in mind that my daughter is struggling more than I am, and do everything I can to help her through. And part of that is refusing to support a media narrative that says I deserve a voice but my child doesn’t.

My son just turned two, and he doesn’t talk much. It’s frustrating, and ironic, to have had a daughter who is autistic and couldn’t stop talking for a million dollars, and a son who, from all available evidence, is not autistic but is just a big ol’ mushmouth. But one of the things he can say is, “I love you”. It doesn’t sound like “I love you.” It sounds kinda like, “N’doo.” But he says it to me every morning when I get him out of his crib. I speak his language. I hear his voice.

“This is the fear, this is the dread, these are the contents of my head.”

For the last year or so, I’ve seen lots of lighthearted Facebook updates from my mom cohort jokingly complaining about how their kids won’t stop asking questions.  At around 3, most kids hit the infamous “why” stage, memorably reinacted by Louis CK in the clip below:

So, my friends would post examples of the endless questions their preschoolers were bombarding them with, and I would laugh and reply with “shut up and eat your fries!” because it’s funny, it really is.  But every time, a little part of me would deflate and wither, because my preschooler had never asked a “why” question in her life.  There would occasionally be other questions (“are you” “is that” “can i” etc. etc.) but very few “wh” questions and literally no “why” questions.  I looked online and found that this was very common in kids with high-functioning autism, even kids who were highly verbal, like D.  This was heartbreaking for me, both from an obvious developmental standpoint and a…well, look.  You’re dealing here with two parents who have an absolutely silly number of post-secondary academic semesters between us.  Asking questions is the foundation of learning.  Inquiry is so important to both of us.  It was hard to wrap my brain around the idea that my child might lack the ability to question.  How do you learn without that curiosity?  Was she just innately incurious?  Or was she dying to learn more but had no idea to even go about pursuing such a thing?  The whole concept was anathema to me.  She is clearly very intelligent, but without the ability to question, she would lack the necessary motivation to pursue knowledege.

Back in the winter, we started D in private speech therapy.  Just one session a week, alongside her occupational therapist, in what they call a “co-treat”.  The goal was to work on pragmatic, or social, language.  We also made “wh” questions one of her measurable goals in behavioral therapy, so her line therapists would actively model question-asking in an effort to encourage her to follow their lead.  I had gotten so frustrated with her inability to understand the logic behind question-asking and -answering.  If/then, why/because…it was all topsy turvy. Imagine this conversation, over and over again, for two years, trying to “parent with love and logic”:

Me: “Do you understand why I’m upset with you?”

D: “Because you yelled!”

Which of course just made me want to yell more.

It came slowly, and it took me a while to notice.  There were little things, just moments where she would show interest in others.  One day she pointed (pointing was also a big challenge — non-verbal communication skills are almost universally delayed in kids on the spectrum) out the window at her therapist’s van parked on the curb.  “Is that your car?” she asked.  It wasn’t a “wh” question, but it was a question that she had clearly constructed from scratch on a topic that had nothing to do with her.  She was randomly curious about someone else’s life.

Then there were more and more.  “Where are we going?” “Who is Kat?” (about my friend who she knows as Katherine but who I almost always call Kat) “When can we (x)?” “What is (x)?”

And then the Whys came.

I can’t even remember the first why, but they’re here now.  They started out as “Why can’t I (x)?” but moved on to “Why is (x)?” “Why does (x)?”…they still haven’t reached “shut up and eat your fries” territory, but more and more she wants to KNOW, she wants to UNDERSTAND.  And even though her fundamental comprehension of big ideas like time and space are still more delayed than other kids her age, she’s suddenly more eager to learn.

And it hit me a couple days ago that parenting is about to get so much more complicated.

I was spoiled by the fact that I could talk about things in broad terms and she would never ask for more specifics.  I tried my hardest not to talk about her like she wasn’t there any more than any parent has to; I presumed that she was listening even if she didn’t seem engaged.  I presumed she understood.  I presumed competence.  But I totally took for granted the lack of follow-up questions.

Suddenly I’m realizing that I will have to have all the big confusing conversations with her that most parents have with their kids.  Conversations about death, about sex, about how things work in this world.  Part of me honestly thought she might just never want to know, or at least she would accept what I told her and not push me to explain at more depth, or debate my assertions.

One day, one day much sooner than I was prepared for, I will have to explain to her why she takes her pills.

One day, I will have to explain to her what autism is.

I am split between ecstatic joy at seeing my child exceed our expectations and abject terror in the face of having to explain something like that to a little girl.

“Your brain works differently.”

Yes, but how?

“Certain things in life will be more challenging for you.”

Yes, but WHY?

“Let me fall into the dream of the astronaut where I get lost in space that goes on forever”

Yesterday I dropped E off for the first time at a playgroup where I didn’t have to stay.  As I was driving home, it just felt so wrong.  It was literally the first time ever that I had left him with someone and didn’t then have to race to another appointment or try to cram as many errands as possible into a tiny chunk of time.  I had nothing planned.  I don’t think I had really wrapped my brain around the fact that I was going to drive away without him.  It was thoroughly unsettling.  And it occurs to me that my brain has slowly warped itself into permanent martyr mode.  I need to always be doing something to warrant having time on my own without the kids.  I’m not allowed to just be Me for two hours, not Mom Me.  I mean, I should at least be vacuuming right now, right, Or folding laundry?  Those are both things I could be doing.

But I’m not.

I’m lying in bed writing a blog post while E naps.

And I’m forcing myself to not feel guilty about it.

Which is FUCKED UP.

Human being deserve time on their own, to do as they please.  At most jobs, you get a lunch break, where you can read the internet as you shove an overpriced Panera sandwich into your mouth over the course of a half hour.  If you smoke, you can even take cigarette breaks!  Ahhhhh, cigarette breaks.  I think I smoked at least four years longer than I otherwise would have just so I could take cigarette breaks.

Stay-at-home moms don’t really get those things.  We get to hide in the kitchen and eat as quickly and quietly as possible so the kids don’t come ask you to share.  Because you would have to share; you’re trying to teach them to share.  But you’re an ADULT and sometimes you just want to eat an entire slice of reheated pizza all by yourself in 90 seconds flat.

Stay-at-home moms get to read the internet for two minutes while the water in the shower warms up and your kids cry and scream on the other side of the door.  They don’t actually need anything, they just want to be able to see you; you have dared to leave their field of vision.

Stay-at-home moms get to tiptoe around the house during naptime, watching an episode of Top Chef from three weeks ago on your computer with headphones on, while your cat, your poor neglected cat, starved for attention, settles onto you lap and frantically licks and nuzzles your arm.  My cat likes to knead my chest, like my boobs are made of bread dough.  Knead, knead, knead.  Need, need, need.

Summer feels like it has only just started, and already I’m getting requests from all D’s therapists to tell me her availability in the fall.  I’ve recently started joking (not-joking) that being D’s mom is like being the Executive Assistant to the CEO of a major multinational corporation.  She has school, she has occupational therapy, she has speech therapy, she has in-home behavioral therapy, she has in-clinic behavioral therapy, she has yoga, she has swimming, she has gymnastics.  Half of her behavioral therapy has to be before 3 on weekdays, and I have to be sure to account for travel time since all the clinics are almost a half hour away from our house/her school.  So I started putting together a prospective schedule in my phone and suddenly realized there’s a new wrinkle: E is starting preschool in the fall.  And my head basically exploded trying to conceptualize all the pick-ups and drop-offs, and how to effectively utilize those two glorious mornings where I will be free between 9 and 10:30.  Because that’s really hardly any time at all, but it’s more than I have now.  And it just seems mindblowing.  Again, should I use that time to rest, to do what I know is best for both my physical and mental health?  Or do I use it to dig through the mountain of laundry in the basement or pick up all the crumbs of Play-Doh hidden in various corners and nooks in the playroom?

I finally broke down the other day and called the Respite Center in town.  I kept hearing that word from various parents and professionals who deal with autistic kids.  Respite.  Respite.  But D is so high-functioning!  Aren’t there other parents who need it more than I do?  But then last week, I slipped on a wet spot on the floor at Super Target and felt my back go TWANG, like a spring in a mattress popping off, and I knew I was totally boned.  It took a couple days before my whole spine finally caved in, but sure enough it did, and I hobbled off to the chiropractor like a wizened crone for their absolute latest appointment of the day so my husband would be home in time and I wouldn’t have to take my kids with me.

Because my kids always come with me.  

Because I’m not allowed to be alone.  If I’m alone, I’m slacking off somehow.

That’s what my head says.  And it’s bullshit.

(I blame all my middle school teachers who said I wasn’t living up to my potential, and all my high school teachers who said I was lazy and a liar when I was actually manic depressive.  For the record, any teachers reading this — don’t say things like this to kids.  You may think you’re motivating them.  You’re not.  You’re breaking them.) 

I called the respite center and introduced myself and said, “I have a four year old with Aspergers and ADHD and an almost-two-year old and I was recently diagnosed with fibromyalgia,” and I heard a sharp intake of breath on the other end of the line and the social worker said, “Ooooh, yeah, you sound like you probably need a break.”

I need a break.

Moms don’t get a break.

I’m not allowed a break.

I don’t deserve a break.

E is waking up now…

Autoreblargh

A few months back, a young political blogger that I follow on Twitter announced that he will retweet any link he sees that references the song “Return of the Mack” by Mark Morrison. This made me try to concoct a list of pop culture references (other than “Return of the Mack”, because obviously I concur with the retweeting of “Return of the Mack”) that I will automatically retweet, or reblog, or retumbl…depending on what particular branch of my personal Internet tree I happened to be perched on. This list is long but honestly probably not comprehensive. So — Maggie’s Auto-Reblog List! I will retweet any and all references to:

-Ralph Tresvant
-Phil Collins-era Genesis and also his solo work up to and including “Something Happened On The Way To Heaven”
-Tootsie
-Summer School
-Weird Science
-Bloom County and Doonesbury (bonus points if it’s a link about Bloom County ripping off Doonesbury)
-November Rain
-Scrooged
-“How’s Annie?
-Dwayne Wayne
-Theo and Cockroach
-Clair Huxtable and/or any of her various alter-egos from the “Theo’s Holiday” episode. Welcome to Amanda’s Furniture City.
-Tami “Hey y’all” Taylor
-The Kang and Kodos election episode of the Simpsons
-Big Daddy Kane’s “I Get the Job Done”
-The Ewok “Yub Nub” song (RIP “Yub Nub” song — DAMN YOU LUCAS!!)
-The Smiths
-Jeff Buckley
-Cocteau Twins
-Greg Dulli
-Sassy Magazine
-9 to 5
-Mr. Show (excluding any sketches written by Scott Aukerman)
-Lady Elaine Fairchild from Mr. Rogers’ Neighborhood
-Labyrinth and the Dark Crystal
-The Great Muppet Caper. Occasionally other Muppet movies, but Caper across the board. Animated GIFs of Charles Grodin? Yes.
-Soap
-Soapdish
-“I Can’t Wait” by Nu Shooz
-“Stay” by Shakespeare’s Sister
-“Hit” by the Sugarcubes
-“Too Many Walls” by Cathy Dennis
-Nate Dogg
-Thoth
-JJ Fad
-Young shirtless Paul Newman
-Young shirtless Marlon Brando
-The last two scenes of Sixteen Candles
-Wilson Phillips
-Archie Comics
-Variations on the phrase “Omar comin'”
-“Don’t Eat The Pictures: Sesame Street at the Metropolitan Museum of Art”
-Luke going to Tosche Station to pick up some power converters
-Dory from Finding Nemo
-“Man in the Mirror”
-Trogdor the Burninator
-“Sugar Lumps”
-Reality Bites
-West Side Story
-The small but impeccable film oeuvre of Charlie Korsmo
-Days of Our Lives 1983-1993
-“All The Girls Standing In The Line For The Bathroom”
-Bea Arthur yelling about condoms or cocaine
-Ramona Quimby
-“Freedom ’90”
-Charlie Kelly
-Ghostbusters 2
-The Care Bears Movie 2
-Back to the Future I and II. Not III.
-The Parent Trap (Original, 2, and 3. Not Hawaiian Honeymoon. Too much Barry Bostwick.)
-The Goonies
-“Music Sounds Better With You”
-The Party
-The video for “Babooshka” by Kate Bush
-The video for “Bull in the Heather” by Sonic Youth
-Wearing an onion on your belt because it was the style at the time
-The audition sequence from Fame
-The Hot Lunch Jam sequence from Fame
-“Desdemona” from the tv show Fame.
-A Chorus Line
-Easy Reader
-Neville Longbottom
-Wedge Antilles
-Prince. Just, anything and everything involving Prince.

“Here Is Fruit For The Crows To Pluck…Here Is A Strange And Bitter Crop”

I had meant for this to be a post about the 20th anniversary of the release of “Exile in Guyville” and the effect that album had on my life. I meant to write a post about music videos that stopped me in my tracks when I happened across them on MTV during my adolescence (“Silent All These Years” by Tori Amos, “Hit” by the Sugarcubes, and “Closer” by Nine Inch Nails, for the record). Maybe I’ll still write that post someday. But on this day, I would like to write about something else I saw on MTV during my adolescence that was far more mindblowing, although I didn’t realize it until years later.

Like most kids my age, I watched a lot of MTV. And so like my most kids my age, I ended up watching a lot of The Real World. It’s a little hard to remember now, since the show long ago descended into a swamp of debauchery, showcasing the absolute worst America’s youth has to offer, but that first season is actually a relatively understated little documentary: 13 episodes about young people pursuing careers in the entertainment industry in a still-vaguely-gritty New York. It’s available in its entirety on Hulu+, and watching it without all the blaring pop music that branded it as an MTV product (“Julie’s in church, but she’s a rebel! Play ‘Personal Jesus’! Now they’re about to fight! Play the ominous tinkly piano bridge from ‘Right Now’ by Van Halen!”) but had to be removed for licensing reasons, you’ll find the overall vibe is very chill. There are a couple episodes that are spectacularly mundane. Andre and Heather are trying to record mediocre albums, Norman turns out to be gay and gets a boyfriend and nobody particularly cares, they’re all sad that Jerry Brown loses the Democratic primary so they paint a big Jerry Brown mural on the loft wall that also includes Sesame Street characters for some reason… The producers tried to spice things up by shipping the girls off to Jamaica to “meet guys”, but Julie just gets her ear talked off by a Canadian masonry salesman and Becky hooks up with one of the show’s directors, getting him and his glorious salt-and-pepper mullet fired. Outside of a totally nonexistent romance the producers tried to cobble together from footage of Julie peeing on the toilet while Eric was in the shower, there was really only one source of drama or narrative thrust.

And that was Kevin.

Kevin Powell has gone on to a decent career as an author, public speaker, and activist. He’s also had a less decent career as a politician, failing multiple times to unseat Ed Towns as New York’s congressional representative from the 10th district by making rookie mistakes like telling a bunch of Satmar Jews he would “bring home the bacon” to Williamsburg and also, you know, not paying his taxes. But in 1992, Kevin was a cowrie-shell-necklace-wearing spoken word poet (Nuyorican Poet’s Cafe, y’all! I read about that in the Sassy magazine piece on spoken word! Man, I thought that must have been the coolest place on earth) from Jersey City who was the oldest and most outspoken member of the cast.

Midway through the season, Kevin was made the butt of an extended practical joke meant to highlight how little time he spent in the loft. The show essentially made it appear like Kevin spent the majority of that loft time arguing racial politics with his castmates. The most memorable argument is the one he had with Julie, the 19-year-old ingenue from Alabama, who claimed he had physically threatened her. He emphatically denied basically every aspect of her story, and the production staff apparently inexplicably (and conveniently) had no footage of the blowup in question. I tend to believe Julie here, given that her account was filled with consistent explicit details (he allegedly called her a fucking bitch, threatened to break all her fingers, and threw a metal candlestick), while his rebuttal was basically, “Nope.” So it’s a classic he-said she-said. Kevin’s stance was that everyone made assumptions about his character and potential for violence simply because he’s black. The fact that he says this while physically towering over Julie, thrusting himself into her personal space and shouting two inches from her face tends to undercut his case here a little. But a lot of what he’s saying is clearly true on a systemic level, even if his personal behavior in this particular situation was hardly exemplary.

Kevin was clearly a very angry young man. But on a certain level, he had a right to be. Earlier in the season, he had another fight, this time with a tipsy Becky, who started blathering something about how we live in a great country that’s a melting pot full of opportunity, which made Kevin snort. Becky tried to defend her statement, Kevin made a crack about the land being stolen from Native Americans, Becky said he had a chip on his shoulder, they bicker, Kevin calls her a racist and Becky of course gets indignant, because as we all know being called a racist is obviously way worse than being affected on a daily basis by systemic institutional racism.

And then Kevin says something really important.

K: Race plus power equals racism, look it up.

B: What power do I have, Kevin?

Watching this when I was 12 years old, I thought Kevin’s statement was ludicrous.

Watching it now, 20 years later, I realize that MTV had enrolled me in Critical Race Studies 101 and I didn’t even know it.

Race plus power equals racism. A lot of the arguments about this boil down to semantics. People of color can certainly hold their own prejudices, or be bigoted. But racism, as a word, holds a specific meaning. It means that we live in a country that was literally built on the backs of black slaves. It means that our society functions in a million ways, big and small, even today, that make it almost impossible for black people to succeed. A society where a seventeen-year-old black boy in a hoodie who happens to be walking in a former Sundown Town is seen as a threat just for his very existence. A society where there is apparently nothing criminal about stalking that seventeen-year-old to the point where he finally turns and confronts you and then when he hits you shooting him point blank in the heart. A society where everyone wants to talk about the kid’s record of school suspensions and weed-smoking as though that’s relevant when he was by all accounts walking back from buying Skittles and Snapple, but not about the shooter’s record of both sexual and domestic assault (not to mention punching a cop!) because that has nothing to do with anything and his parents say he’s a nice guy and not a racist so that’s good enough to trust his word on anything he says about the night in question. A country where the shooter’s lawyer has the audacity to assert in a post-verdict press conference that if the shooter was black the whole thing never would have gone to trial. A country where black males are disproportionately imprisoned, disproportionately sentenced, and disproportionately disenfranchised upon release. Sure, everyone would have been ok with a black vigilante shooting a white kid in Sanford, Florida. Totally would have been fine. Knock knock.

Something else the shooter’s lawyer said was equally jaw-dropping:

“There are people who are vicious in their hatred for George Zimmerman. I don’t know which is the one who’s going to walk down the street at the same time George does. They know what he looks like; he doesn’t know what they look like.”

Welcome to Kevin Powell’s life. Welcome to Trayvon Martin’s life.

I could link here to many different first person essays by black men who feel like what happened to Trayvon could happen to them, essays by black women terrified that what happened to Trayvon could happen to their sons. But while Becky and I, as middle-class white women, still face systemic obstacles based on our gender, we can never fully understand what it is like to fear for our lives simply because of the color of our skin. That is a privilege that we have and are able to take for granted.

As an adolescent, I thought Kevin was an angry aggressive dick with a chip on his shoulder, like Becky and Julie did. And you know, my opinion of him hasn’t changed all that much, except now I feel like the chip on his shoulder is valid and his anger is earned. In the last 20 years, LeVar Burton has moved from teaching kids literacy to advising young men on how not to get shot by cops for driving while black. What George Zimmerman did was apparently totally legal, and all the cable pundits talk about the potential for black riots in the aftermath of that verdict. That’s Becky’s melting pot? That’s Becky’s country of unlimited opportunity?

The Real World is basically just a filmed orgy now. But 20 years ago, it was planting tiny seeds for young people to have a deeper understanding of complicated social issues. In the first few years of the show, before I was even able to drive, I saw intense discussions about race, and about homosexuality, and about abortion. We saw a young man living with and then all too quickly dying of AIDS. And we saw Kevin Powell, who was intelligent, and angry, and passionate, and flawed.

“Race plus power equals racism, look it up.”

I wish more people, myself included, had followed his suggestion. Because if what happened between George Zimmerman and Trayvon Martin, and what happened within the justice system following the shooting, wasn’t about power or race, then I would like someone to tell me what it was about. Was it about being in the wrong place at the wrong time? Was it a tragedy of errors? Was it about how those fucking punks always get away with everything? Tell me. But more important, tell Kevin Powell. Tell the parents of Trayvon Martin, of Oscar Grant, of Kimani Grey, of Kendrec McDade, of Sean Bell. Of Amadou Diallo. Of Emmett Till.

“Whoever’s in charge up there had better take the elevator down and put more than change in our cup…”

Aside

I learned about the filibuster in the Texas state senate late Tuesday afternoon. I was generally aware of the abortion bill making its way through the Texas legislature.  I had the impression that it was largely similar to bills that have passed in many states where the Republicans held both executive and legislative control.  These bills, firstly, try to ban abortion outright after some arbitrary point in gestation, usually 20ish weeks.  They also impose onerous and medically unnecessary restrictions in the name of “protecting women’s health” which are really intended to create insurmountable obstacles for women seeking abortions to do so in a timely fashion, as well as forcing smaller clinics to close due to the financial impossibility of meeting the new requirements.

Texas has already passed plenty of obnoxious anti-abortion bills, including one that requires mandatory sonograms — the one thing that gets me more tiled up than anything else that shows up regularly in this type of legislation.  Given that most abortions will be performed early in the first trimester, before a heartbeat is detectable by an abdominal ultrasound, that means most women will be forced to have a transvaginal ultrasound.  and yes, transvaginal ultrasounds are exactly what they sound like, even if the people legislating them refuse to say the word or hear the word.  So essentially the state is forcing doctors, against their will, to perform acts of penetrative sexual assault on women.  I know I’ve digressed a bit here, but seriously, I could write a whole post on how angry I get about mandatory ultrasound laws and the condescending arguments legislators have the gall to make in their defense.  But I won’t.  I’ll talk more about what was being proposed in Texas the other night.

The bill in question was called Senate Bill 5, or #SB5 if you wanna tweet about it.  SB5, a version of which had already passed through the Texas House of Representatives, would:

  • Outlaw all abortions at 20 weeks post-fertilization, with no exception for rape or incest victims
  • Require all abortion doctors to have admitting privileges at hospitals within 30 miles of where they practice.
  • Require women to have TWO in-person visits to a doctor before she gets an abortion
  • Require every abortion provider to be licensed as an ambulatory surgery center, at a cost of approximately $1 million per clinic, effectively guaranteeing the closure of all but 5 clinics in the state, clinics that provide many services above and beyond abortion.  That would leave vast swaths of the second largest state in the nation not only far removed from any abortion services, but much harder up for other health care, like pap smears, mammograms and contraception.

(verbiage taken mainly from the rundown on this site)

This bill would make it virtually impossible for the majority of Texas women to exercise what the Supreme Court ruled 40 years ago was a constitutionally guaranteed right to an abortion.  This was the bill that finally sent Senator Wendy Davis into filibuster mode.  Wendy Davis, who was once a teen mom living in a trailer park who worked her way up to Harvard Law.  Wendy Davis, whose district was almost gerrymandered such that she would surely lose her seat but was saved by the oversight imposed by Sections 4 & 5 of the Voting Rights Act — sections that were essentially deemed void by the Supreme Court the same morning that SB5 was set to pass the Texas State Senate.  Mere hours after the Supreme Court decision came down in Shelby County v. Holder, Texas Attorney General Greg Abbott announced that the ruling would allow him to institute the redistricting maps in question. This was Wendy Davis’s last stand, and, as many reporters were quick to note, she was making it in a pair of very sassy shoes, looking like Tami Taylor.  Hi y’all!  Someone call Connie Britton; her Oscar winning role is waiting for her!

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When I first heard about the filibuster, I decided I wasn’t going to watch it or follow it on Twitter.  I had gotten exactly, no lie, 45 minutes of sleep the night before; I was home with my kids; and I just didn’t have the emotional strength needed to deal with what I was sure would be a crushing defeat.  Her first “strike” was for being off topic, but her second was for receiving assistance from a fellow senator in putting on a back brace.  (Side note here: apparently Senator Ellis wasn’t allowed to help Davis put on a back brace, but during the longest filibuster in Texas history, Republican senators brought their colleague a trashcan and then formed a human circle around him so he could take a dump in private.  OK. Sure.) I was positive the third strike would be for some infuriating momentary lapse.  She would shift her weight enough that her hip would rest momentarily on a desk, say.  Or she would sneeze really hard and put her hand out reflexively to steady herself because she was exhausted and dizzy.  Something stupid.  Basically the floor of the Texas senate had become one giant game of Operation and Wendy Davis was a shaky pair of tweezers.

But as time ticked by I grew more and more intrigued by this lady who never leaned, who never sneezed, who never did anything but adjust her glasses slightly as she flipped through pages and pages of material — first person stories of abortions that had been submitted on her website, descriptions of the procedures in question, and finally, after I eventually realized that something epic was under way, that this woman was in it to win it, after the kids had gone to bed and I was flipping back and forth on my phone between Facebook, Twitter, and the Texas Tribune live camera…finally, she began to talk about how the different restrictions on abortion would combine together to create a circumstance that took far too much time and money for almost any woman to overcome.

At 9:38 CT, I posted on Facebook, almost delirious with excitement and anticipation:

I was in labor with D for 20 hours.  My sister was in labor for 40 with her son.  Underestimate the strength and stamina of women at your own peril.  We are made of sinew, bone, and steel.  10.5 hours down. 2.5 hours to go.  Stand.  With.  Wendy.

Shortly after that, the sound on the live feed was cut.

*

I didn’t see what happened immediately before the sound went out; I turned the live feed back on after a short break and it was already silent.  Having read earlier that no sound meant there was some sort of off-the-record debate happening, I scour the #sb5 tag on Twitter to try and discern what they are talking about.  Apparently a Republican senator had tried to call a third strike, claimed that something Senator Davis had said was “not germane” to the bill as is stipulated by the filibuster rules.  Someone tweets that she’d mentioned RU-486 and been deemed off topic.  I scoff. No way could anyone with half a brain say that discussions of abortions aren’t germane to a bill about abortions.  Next someone says that she was called out for discussing the sonogram bill that had already passed last year.  Again, totally germane.  You tell women they have to do two visits and a sonogram and the only clinics available to them are hundreds of miles from home, that clearly adds up to an undue burden.  No way could they shut her down for that.  No way.  No way.

Facebook 10:06 pm:

THAT IS FUCKING RIDICULOUS.  THAT IS FUCKING…THOSE DISINGENUOUS MOTHERFUCKERS.

 

(Sometimes, when I’m mad, I use long words like “disingenuous”.  Sometimes, when I’m REEEEEEEALLY mad, I use even longer words like “motherfuckers”.)

They were never going to let this happen.  That much is clear now.  They were always planning to torture this woman, to make her waste her time and energy in a task that they would find a way to thwart in the end anyway. Hm.  Sounds surprisingly similar to how they approach another relevant issue, affecting not just one women but all women.  But THIS one woman, this woman that they had planned to crush all along, keeps standing as Twitter and Facebook erupts along with the crowd watching from above in the senate gallery.

And then, as Lieutenant Governor Dewhurst banged the gavel to silence the boos and the “shame!”s and one absolutely livid cry of “BULLSHIT!” a middle-aged white-haired man stands up, looking and sounding like he’s just apparated there from the set of “Inherit the Wind”, and says, “Parliamentary Inquiry: Is your decision appealable?” This terrifying wraith in a white wool suit at Dewhurst’s elbow whispers in his ear; he reluctantly answers that it is. Kirk Watson (D-Austin): “Point of Order: I move to overturn the motion and begin debate.”

Facebook 10:12 pm:

OH SHIT IS WHAT I THINK IS HAPPENING ACTUALLY ABOUT TO HAPPEN? Is this guy about to start debate on this motion and essentially start a new filibuster? Please tell me yes.  Please.  Please.

Reply from my super smart lawyer friend Abby 10:13 pm:

WATSON IS ON IT

Facebook 10:13 pm:

OH SHIT WHO CAN WE CAST AS WATSON IN THE MOVIE NOW?

Facebook 10:15 pm:

OH SNAP WHO IS THIS NEW LADY UP IN HERE MAKING HIM RE-EXPLAIN EVERYTHING? I suddenly love all the Democrats in the Texas state senate.

 

The new lady is Senator Leticia Van de Putte (D-San Antonio), who poses another “Parliamentary Inquiry”, this time to Senator Robert Duncan, who has taken over for the Lt. Governor on the dais: “Since I was not able to be here on the floor because of my father’s funeral (!!!), I ask that you tell me the three points of order so that I may understand even in the most basic way the debate about to begin.”

weekendupdate

Duncan rolls his eyes,  The scary elbow lady looks like she’s about to throttle someone.

My Super Smart Lawyer Friend Abby 10:19 pm

To whom can we submit ideas for stupid parliamentary order questions they can ask for the next 1.5 hours?

 

And then all hell breaks loose. Someone named Senator Estes moves to table Watson’s appeal.  Someone named Senator West claims Duncan was out of order for recognizing Estes. I can’t make heads or tails of any of it, so I get down to the brass tacks of fancasting Connie Britton’s Oscar-winning movie.

Facebook 10:24 pm

OK, Randy Jackson gets to cameo as Senator West.

Facebook 10:28 pm

Senator Estes will be played by the Slurm Monster from Futurama

 

Senator Royce West (D-Dallas) says they should take a break to review the parliamentary procedure that has gotten them to this point and see whether Estes should have been allowed to make a motion or whether Watson still had the floor.  “Just review the tape,” he says in a silky smooth baritone, gesturing with the slightest shrug.  “That’s all I’m asking.” I suddenly get a little hot under the collar and mentally recast the role of Senator West with Idris Elba. (THAT IS SERIOUSLY MY HIGHEST POSSIBLE COMPLIMENT SENATOR ROYCE WEST D-DALLAS JUST SO YOU KNOW IF YOU EVER READ THIS.)

The floor becomes a kerfuffle of incomprehensible “point of order” and “parliamentary inquiry” requests.

Facebook 10:30 pm

SIT DOWN SENATOR TANKERBELL YOU DON’T KNOW WHAT YOU’RE TALKING ABOUT. SENATOR WATSON HAS NOT YIELDED THE FLOOR.

 

I actually begin to fear that scary elbow lady might start shooting death rays out of her eyes to pick off cranky Senator Rodney Ellis (D-Houston) and Senator Judith Zaffirini (D-Laredo), who is clearly attempting to debate the ruling on “germaneness” and “aid” technicalities even though she’s claiming she simply has a “parliamentary inquiry”.  Duncan finally puts his foot down and orders Watson to give his closing statement.  Watson, speaking as slooooowly as possible, basically starts in with an abortion-themed “I’m just a simple country lawyer” monologue.  I give up.  There’s no way they’ll be able to drag this out.  I turn off the feed.

But I can’t stay away.  Despite my lack of sleep, I am somehow hyper-awake.  Ten minutes before midnight, I turn my phone back on, and everyone on Twitter is going apeshit over something Senator Van de Putte has said.

 

“Did the President hear me or did the President hear me and refuse to recognize me?” state Sen. Leticia Van De Putte asked.

“At what point must a female senator raise her hand or her voice to be recognized over her male colleagues?” she asked as the chamber erupted in cheers. (Huffington Post)

I turn on the live feed.  The room is in chaos.  Senators and staffers are wandering around, looking bewildered.  The crowd in the gallery is screaming so loud no one knows what’s going on.  They are drowning out Dewhurst’s attempt to hold a roll-call vote, and it’s one of the most spectacular things I have ever seen.  The leadership finally trued to gather everyone into a scrum to vote, but it’s too late.

Facebook 12:00 am

NO VOTE NO VOTE MY PHONE SAYS MIDNIGHT

 

On the floor, in the middle of the huddled legislators, Senator West thrusts his phone into the air, looks up into the crowing gallery, and shouts, “It’s midnight! It’s midnight!”

Facebook 12:02 am

RANDY JACKSON’S IPHONE SAYS IT’S MIDNIGHT TOO

 

Suddenly you can distantly hear names being called and responded to.

My Super Smart Lawyer Friend Abby 12:02 am

they are voting. they are voting.

*

In the aftermath, some of the senators said they didn’t even know what they were voting on.  Was it the motion to end the filibuster? Was it the bill itself? The Republicans dutifully hollered “support!” and the Democrats who were close enough to hear shouted “oppose!” and Senator Van de Putte paced in agitation around the dais.  But we were all watching.  There were over 150K of us watching.  We’d seen with our own eyes that the vote came after midnight.  The senators began to leave the floor, the cameras were pushed back to the perimeter, the state troopers came to clear the gallery.

CBS News tweeted that the bill had passed.  Their source was an unnamed Republican legislator.

The people I follow on Twitter went absolutely nanners.  I was actually a little concerned that Wil Wheaton was going to have a stroke.

I retired to bed at that point, resigned to the idea of a lengthy court battle.  So I missed all the fun drama around 1 am when screenshots surfaced showing that the Texas legislature website originally logged the vote as happening on the 26th, until someone apparently manually changed it to 11:59 pm on the 25th.  I can only assume that SOMEONE raised serious hell about that backstage, because around 3 am it was changed back and Dewhurst grudgingly acknowledged that the vote had not happened within the time limits of the special session.

In the end, this was all mostly symbolic.  Clearly Governor Perry would just call another special session to pass the bill. But the Republicans in the senate were so determined to deny Wendy Davis even that small symbolic victory that they made an absolute mockery of the whole process.  They took what was already a parliamentary farce and decided that the rules they had been so determined to enforce all day with regards to Senator Davis didn’t apply to themselves.  (I would like to sidebar here for a moment and point you to a document that shows how this is not an isolated incident. It is called “The Only Moral Abortion Is My Abortion” and it seems more than germane to the topic at hand.)

I have read comments saying that the so-called “citizen’s filibuster” that happened in the last ten minutes of the session was less democracy in action and more the rioting of a mob.  But what really happened was a realization that this game was rigged from the start; that our democracy is filled with tricks and traps, like gerrymandering and filibustering and parliamentary rigamarole and court packing and straight-up fucking vote fraud.  These things are built into the system.  And a whole bunch of people, mostly women, sat in that gallery and watched their democratically elected representatives play a game that would directly affect their lives, their bodies, the lives and bodies of the people they love.  They watched people of principle make a stand on their behalf: Senator Van de Putte cared enough to leave her father’s funeral to come back to vote.  Senator West and Senator Ellis woke up that morning and basically heard the Supreme Court rule that there was no more racism in Texas; I’m guessing that might well have galvanized their resolve a bit.  And Senator Davis saw, in that very same ruling, the Supreme Court eviscerating any chance she had of re-election.  So she was going to stand. And Van de Putte, West, Watson, Ellis, Zaffirini: they were all going to stand with her.  And so were the people in that gallery, and so were the people in the rotunda, and so were Wil Wheaton and my Super Smart Lawyer Friend Abby and me and the thousands upon thousands of us glued to the live feed of a tiny local media company that had barely gotten any hits before this.

You can call it a mob.  But the only weapons any of us had were our feet (so we stood) and our voices (so we shouted).  And CBS and the AP were taking the word of the lieutenant governor that the bill passed, no questions asked. And CNN was literally talking about blueberry muffins.  Maybe even more people would stand and shout, if only we had a national news media that would ACTUALLY COVER NEWS.

There was a tweet from a Jill Biden parody account floating around that evening that said, “At 12:01 AM, CT, I predict Wendy Davis will give us the best mic drop the world has ever seen.” We were cheated out of a mic drop, but we got a phone thrust — those of us who were watching knew the exact moment a line had been crossed.  And we refused to let them cheat.

It will only be for a moment.  The bill will be back, and it will pass.

I don’t have a good ending for this post.

We stood with Wendy.

That’ll have to do for now.

“There are things not in your book. There are paths outside this garden.”

My husband expressed some reservations about my recent posts about my daughter. He worries that someday D will be able to read this and will be hurt by things I have said. So I think I need to clarify the point I wanted to make. D is difficult to handle a lot of the time. So are all small children, but her particular set of clinical peculiarities makes her slightly more challenging than most. But I love her wholeheartedly, for who she is and always has been. The therapies D does are not an attempt to “cure” her. I understand why other parents of autistic children (or “children with autism”, as some parents prefer; I don’t, for reasons I hope will soon be made clear) choose a different path. It would be unfair for me, as someone who is able to have a relatively linear conversation with my daughter, to judge parents with non-verbal kids, or kids who had a distinct regression, for seeing autism as far more insidious than I do, and for thus taking a more aggressive approach to helping their children. Parents who try different diets, different vitamin supplements, even things like hyperbaric oxygen chamber treatments — these things aren’t harmful, and if they help certain children make gains in social communication or reducing the frequency and duration of meltdowns, that’s awesome. We have dabbled in a few supplements, and I try to pay close attention to any dietary triggers D might have…but overall we have chosen a behavioral approach rather than a biomedical one, because I don’t see any evidence, in D’s case at least, that autism is a “disease” that needs curing.

We wanted to give D treatments that would help her adapt better to a world that isn’t made for people whose brains work the way hers does. We do a ton of play-based therapy, which, among other things, has helped her learn how to play in a way that looks familiar to other kids, so she doesn’t become isolated due to her more esoteric interests. We have done occupational therapy, to help her learn fine motor skills that are important both in academic/social environments and in self-care. We have done speech therapy that focused mainly on pragmatic speech, so that she would become more confident in her ability to express her own thoughts rather than recite scripts, and so she could begin to communicate in a reciprocal way with her family and her peers. All of those things simultaneously help her better regulate her moods, identify her emotions, and cope with frustration. She does a lot. Play is her work, and she works hard.

Many people would look at that paragraph and ask how we can possibly say we aren’t trying to change our child if we’re making her do all that. But the thing is, D herself, who she is and how she works and what she loves, is fundamental and unchangeable. And that fundamental, unchangeable part of her is inherently autistic. It’s not something that can be separated out and cured. She has been so clearly and entirely herself since the day she was born that it is impossible for me to imagine a D who is not autistic. We do these therapies as an early intervention so that she learns the skills she needs to integrate herself into society. But there is an even larger part of this equation that is about learning, as parents, how to nurture this particular “square peg”. Probably the best possible example of how these two aspects come together happened yesterday: We went strawberry picking.

*

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Almost exactly two years ago, I took D strawberry picking for the first time. She was two years and three months old. I was about 6 months pregnant, maybe 7. I had been looking at adorable pictures on various friends’ Facebook pages of their two-year-olds strawberry picking for the previous couple weeks, and I was totally psyched for this field trip. We were planning to meet some other kids there. We read Blueberries For Sal that morning, and D walked around the house throwing a variety of foodstuffs into a beach pail and announcing, “Kerplink, kerplank, kerplunk!” We were ready.

We got to the farm and almost immediately the whole thing started to collapse like a shoddy toothpick castle. D refused to pick any strawberries. She refused to even try any that I picked, declaring, and I quote, “Strawberries are yucky.”

“What are you even TALKING about, strawberries are yucky??” I spluttered. “You LOVE strawberries.”

She ignored me. I looked around, desperately, to see if any of my friends had arrived and missed me, wandered off to a separate patch. If only she could see other kids picking strawberries, I thought, she would see how much fun it could be. There was no one. At a farm 15 miles from our apartment, I had suddenly never felt more alone in my life.

D pulled heaping handfuls of soil from under the strawberry plants and let it float to the ground through her fingertips. I ignored her and merrily trilled, “Kerplink, kerplank, kerplunk!” through gritted teeth. Modeling behavior. Modeling behavior.

She jabbered in the nonsense language she often lapsed into as she sprinkled the dirt onto her head. “Honey, no,” I said, sternly.

“Honey, noooooo,” she repeated as she began to rip up the leaves of the strawberry plants.

“Seriously, I mean it. Do NOT rip the plants. NO.” And then she threw dirt over my head. As it settled on my eyelashes, I stood up, dusted myself off, and said, “OK. That’s it. We’re done.”

That’s when she ran.

D bolted at top speed through the rows of strawberry plants, crushing fruit beneath her sandals. I tried to chase her, with 25 pounds of extra pregnancy weight hanging off me, under the broiling summer sun, for just a moment, before I gave up. FUCK THIS, I thought to myself. I stomped as quickly as I could in petulant fury across the fields, screeching, “COULD SOMEBODY PLEASE GRAB HER BEFORE SHE HITS THE PARKING LOT??” at all the strawberry farm attendants who were staring, mouths agape, at the spectacle.

Someone did eventually stop her, and I actually managed to bring a partially-filled flat of berries up to the front of the field — I had picked enough that I felt obligated to pay. As we stood at the checkout stand, I held D’s wrist so tightly, I’m ashamed to say, that I’m pretty sure I bruised her, since she was trying to wrench herself, screaming bloody murder, out of my grasp to dart away again. I ran into a friend and her child in the parking lot, but I have literally no recollection of what we said to one another. All I remember is seeing red. Have you ever literally seen red? I think it happens when the rage in your brain pushes all the blood vessels in your eyeballs closer to the surface. That’s how science works, yes? My field of vision was the color of blood. It wasn’t the obstinance, or the destructiveness, or the wanton disregard for her personal safety. It was the unavoidable sensation that she had not even been on the same planet as I was. This was not a fun outing gone wrong. This was simply a set of perpendicular lines. D and I did not intersect, emotionally or functionally, at any point during that entire activity.

In the car I began to yell, but I couldn’t even come up with words to describe how I felt. I simply started wailing, huge heaving sobs. And in the backseat, D began to laugh hysterically. She didn’t realize I was crying. She thought I was laughing.

It was a real low point in our relationship, let’s just say. My friends eventually arrived at the farm long after we left. The pictures they posted on Facebook were adorable and made me want to stab myself in the chest.

Yesterday, I took D strawberry picking. Different farm, brother now extant, and accompanied by the same friends that we had crossed paths with in the parking lot two years ago. We walked up to the patch that the proprietors said would be most bountiful; I figured if D didn’t have to dig too deep to find good berries she might find the process more engaging. She picked about 5 berries, and very calmly said, “OK, I’m done.” I tried momentarily to cajole her back, but she said, “No thanks.” So I let her run off, because we’ve reached a point where I can now actually trust her to stop if I say stop…mostly. There were goats on the farm, and she wanted to pet the goats. It was understandable. I know she prefers fauna to flora, as a rule. I tried a bit harder to get her brother, who is about 6 months younger than she had been on that first outing, to participate in the activity at hand, but he just wanted to eat the berries I picked and tromp through the rows of a muddy cornfield. And then he joined his sister and her friend by the goats. There was also a young calf that they all loved. An older child pointed out that they could feed strawberries from a nearby patch to the animals, so D and her friend proceeded to do just that. My friend and I then moved our picking operation to the opposite side of the same patch. I literally met her halfway.

D is always going to be a little bit in her own world. But we, as a team, have come so far in two years that it makes my heart feel like it’s going to burst some days. My love for her is overflowing. I don’t want her to change who she is. I love who she is. I just wanted to find a way for us to meet halfway.

*

Recently, a boy named Alex Spourdalakis was brutally stabbed to death by his mother. He is only the most recent in a line of similar murders. As I said earlier, my experiences simply cannot compare to those of parents who have non-verbal, non-toilet-trained, violent and unpredictable autistic children. But this woman apparently, based on the support she received prior to the murder from Andrew Wakefield and the anti-vaccine activists from Age of Autism, subscribed to the idea that autism was this THING that afflicted her child, that had somehow stolen her real son from her, that needed to be cured at all costs. I’m willing to bet that at trial we’ll hear about things like chelation and bleach enemas, all these awful treatments that desperate parents try when it is too hard to accept that autism is part of who their child is, down to their very core. Behaviors can be changed, both on the part of the child and the parent. But Alex Spourdalakis was not a “child with autism”. He was an autistic child. And now he is dead. I know his mother was overwhelmed in a way that I couldn’t even presume to imagine. But I truly believe that the only way to keep more awful tragedies like Alex’s from happening is to fight for autism ACCEPTANCE rather than autism AWARENESS. Awareness is the first step. But it’s not enough. Alex Spourdalakis’ mother may have loved her son, but she never accepted him.

I love my daughter. I became aware that she is autistic; I accepted that she is autistic. And now I’m on the next stage, which is EMBRACING that my daughter is autistic, recognizing the challenges but still loving every inch of her. She works so hard, but she’s working to change and improve BEHAVIORS, not who she innately is. As a parent, I try to do the same…so we can continue to meet each other halfway.

I don’t have a problem with D reading this someday; I actually hope she does. Because I want her to know that despite any sadness and frustration I have as a parent, it doesn’t affect how I feel about her as my child. She’s the best. I can’t imagine having a different daughter. She’s the best.

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