You know it’s going to be a good week, Pranksters, when I have to put a disclaimer up. That said, it’s AUTISM DAY AGAIN!! The only thing I have to say is TRUST ME when I say that I’m not talking about a single one of you. You know that I value every one of your comments and frame them on my walls because they are always well thought-out and respectful. Also: hilarious.

So, before you’re all, ZOMG DOES SHE MEAN ME? Of course I don’t. I have never once been unhappy with a single comment you guys have left on the site ever. Honestly. I always WELCOME your stories and advice because that’s how I roll (this will make more sense once you read the post). If I’m talking about it, I want to hear what you know. Always. Including today.

Dear Aunt Becky,

Am I the only one who is sick of having the same pap thrown at me when the topic of my autistic child is being discussed? Well-intentioned friends and internet moles especially love the ‘Trip to France’ or whatever destination vacation a “normal” child is supposed to take us. I love my child, and I don’t feel like I missed out on a trip to Paris or Sweden or wherever. It’s been a real trip, but all children take us on a trip that sure as shit isn’t where we thought we’d go.

When I was a kid I’d ask my parents where they were going (without their 7 kids) and they’d respond, “Crazy.” I totally get it now that I’m a parent.

I don’t think a special diet will cure my child. In fact, I’m not looking for a cure. I don’t consider my son to be diseased. He has autism. He’s unique. I adore him. He’s funny, serious, frustrating, loving, rewarding, and much more. I don’t think anything I did while pregnant or when he was a baby caused this. Asperger’s runs in both my family and my husband’s family. Heck, if they’d been diagnosing it when we were kids, both my husband and I would qualify, as would my sister, my mother, etc.

Is it ok if I just bear the dirty looks when my son acts a little differently and don’t explain, “oh, he’s autistic?” I’m not excusing his behavior; just explaining, but I get tired of the rest of the conversation about dyes, carbs, hfcs, vaccinations, mercury, etc.

Thanks Aunt Becky!
Mama Lizard

So there was this one time I was out to dinner with my friends – friends I saw maybe once or twice a year – and I happened to make mention that I thought I might be lactose intolerant (spoiler alert! I’M NOT).

Well, there was a girl who was at the table behind us who overheard this conversation and decided to join in. She was lactose intolerant, you see, and milk gave her the squirts, and also she had a cat and a book and liked the color red and she spent the entire hour that we’d planned for dinner telling us about her lactose allergy.

I waited for her to shut up so that maybe I could sneak in that appropriate, “gee, thanks for the info, please shut your whore mouth and let me visit with my friends who I never see, and not you and PS you smell like mothballs,” but I couldn’t. Maybe I should have interrupted her rousing discussion of her fucking colon to tell her to take her squirty pooper somewhere else, but I was afraid she’d shiv me with her butter knife. She had shifty eyes.

I got this a lot before I learned a valuable lesson: shut your OWN whore mouth.

(Also: thar be crazies afoot!)

Alas, I digress.

When you have a common complaint like autism or migraines or a squirty pooper, the general knuckle-dragging, Mole Rat population tends to know a bit about it. Or at least, the sensationalized news bites that we’re bombarded with every freaking second.

So when you say something like, “My kid has autism,” sometimes people misinterpret that as, “Please, tell me all about the latest bullshit you heard from some non-medical Internet email forward!” Or, perhaps, “Please repeat what you saw when Jenny Fucking McCarthy went on Oprah and spewed her crap pseudoscience all over the place! I’d love to hear that soundbite!”

I like to imagine that people mean well, I really do, but that’s because it’s been a long time since my kid got diagnosed with autism and I’ve learned to tune out the bullshit. My son is not his diagnosis. People, in the heart of hearts, are good. Sometimes, they just don’t understand that you don’t want to hear it because you’re in the checkout at Target and your son is bathing the floor with his tongue and REALLY? A new diet? You don’t say?! That’s fucking great. Do I look like I give a shit at this moment in time?

I love blogs, but I don’t trust that what I’m reading is always backed by a science I believe in. Illnesses (autism, migraines pooper issues), those tend to be emotional issues for a lot of people. And when emotions get involved, things can get ugly, fast. Hence, the Internet Mole People. I can cite a thousand examples of When Emotions Go Bad on The Internet, but I’ll save that topic for another time, or, I suppose, allow you to fill in in the comments.

If you’ve noticed, I also don’t tend to discuss medical issues on Mah Blog for the very reason you discussed unless I’m ready to, well, discuss it. I don’t do it in real life, either; well, not any more. The image of her creepy colon spewing everywhere was enough to make me shut the hell up.

I figure that people can point and laugh and judge me as a lousy, unfit parent or otherwise loser at life all that they want. So long as I don’t have to hear about mercury in shellfish or how a gluten-free diet will cure all of my woes. It’s not because I don’t believe them, it’s just because I don’t always care.

You and I can stand in the We Are Shitty Parents People Lose At Life Corner together. I’ll bring you a Shut Your Whore Mouth shirt to wear. Hell, I’ll bring enough for ALL of us. WHO’S WITH ME?

————-

So, Pranksters, what say you on the topic?

I wanted to thank you for your incredible display of warmth and kindness on my post about autism. When I say things like, “I’m honored to know you,” I’m not being a hokey ball of cheese, I mean it. I’m incredibly lucky to have such an amazing group of Pranksters in my life. Thank you. To everyone who commented, tweeted, emailed, or read the post, I thank you.

Historically, it’s been hard for me to talk about autism and how it affects us because I simply don’t know what to say about it. As so many of you said (and like so many other disorders, diagnoses and conditions) it’s not the same sort of disorder for everyone, but because it’s so prevalent in the media, everyone is an expert. That makes it difficult when “experts” like Jenny McCarthy and the guy down the street want to lecture you on the danger of dioxin because they “know” better than you do.

Simply put: they don’t.

But when it’s something that’s so close to your heart, no, when it’s PART of your heart, it’s not something you just want to lay out there for Rando Joe Schmo to trample on.

I was wrong.

Because it dawned on me as I read all of your incredible stories what power we have. Each of us. What a unique platform we have at our disposal.

Before, if we wanted to be heard, we had to write a book, hope it was interesting enough to get picked up by a publisher (whose bottom line was, of course, big fat dollar signs) hope that the book was read by enough people to be considered a success and then maybe, just maybe, we’d be heard by the Right People. Newspaper and magazine articles went through a similar process, only to be read by a smaller audience. The common denominator was that people had to pay money to access the words you wrote, IF you were enough of a success to be published at all.

But in the era of self-publishing, it simply doesn’t matter what your pedigree is. People who’ve never written a single word can start a blog with a few keystrokes (see example: Mommy Wants Vodka) for free. It costs nothing to read the words I write. Not a cent. Sure, you may pay for your internet connection, but that’s different.

You know, Pranksters, I’m not a fan of self-centered blog “ZOMG BLOGGING IS THE BESTEST!!!!!!!!!!” circle jerks, but I’m constantly amazed by how unique our platform is.

We can give a voice to those who have none. We can give a face and a name to things you’ve never heard of. We have power to do so much good.

People read us to connect with other people, not the cold, clipped, polished words in a magazine. Our blogs have the human element that would be neatly left on the editing room floor of any newspaper. We’re too raw, too unfiltered, and too real. But it’s our flaws that make us interesting and our pain that binds us together.

If you’ve read my blog for any length of time, you know what a neural tube defect is. You also know my daughter, Amelia, was born with a very rare one called an encephalocele. It’s likely you hadn’t heard of it before you met Your Aunt Becky and her daughter Amelia. I’d learned of neural tube defects in school and I knew of encephaloceles…but typically in conjunction with Chiari Malformation.

Now you’ve all heard of it. You know that THIS girl had one:

Over the past two years, I’ve given encephaloceles a voice. And a face. This is what an encephalocele looks like.

Through my blog, I’ve met people who have been prenatally diagnosed with encephaloceles. I’ve met adults with encephaloceles and other neural tube defects. I’ve become a March of Dimes Mom. I’m planning a resource website for those with encephaloceles because none exist. I’ve become an advocate and a voice for encephaloceles.

I became a voice because it was the right thing to do.

You just reminded me that it’s still the right thing to do. Now it’s my turn.

So this is me, Your Aunt Becky, encouraging you to speak your truth. Stand up tall and proud for what you believe in. Give a voice to those who have none and a hand to those who may not think to ask.

Pull those skeletons out of your closets and make them dance the motherfucking tango.

What follows is not a particularly joyful post. If you want something pithy, click here.

———-

Ben ran away last week.

I didn’t tell you about it because it’s hard to talk about autism on my blog because there’s always someone whose best friend’s sister’s boyfriend’s girlfriend knows this guy who knows this girl who knows this kid who has this brother who has autism, too. And SHE heard that removing gluten AND standing on his head for sixteen hours a day made him normal again.

That’s awesome for that family, truly, I’m happy. But like any other condition, there’s a million different variations and this is MY kid we’re talking about here and this is our story. And, I should add, I DO want to hear about your children and your stories, Pranksters. I do. I promise.

Why, Aunt Becky, did your son run away? I can hear you practically screaming at the computer monitor, cup of coffee clenched in your hand as you shiver with antici…..

….pation.

The answer is: I don’t know. HE doesn’t know. All I know is that he decided, upon returning from my mother’s house where he had been spending the morning while I worked, that my (technically also his) house was bullshit and he’d rather not come home and so he took off.

His brother informed me, “Ben ran away,” and assuming Ben had just stomped off to his room, I wasn’t terribly worried.

Until I couldn’t find him in his room, slouched petulantly in either car, holed up in the basement reading a book or lurking around the exterior of my house.

It was then that the blind panic set in. I drove down the street, the bitter taste of adrenaline coating the back of my tongue, as I looked left and right, hoping to spot my son somewhere; anywhere.

I found him, his mop of dark hair a stark contrast to the white snow, a body all elbows and knees, trying to cross a busy road at the edge of my subdivision.

I pulled over and hollered at him to get into the car, and he did. He peered sheepishly at me through eyelashes as long as his sisters as he buckled his seat belt.

For once, I was at a loss for words. I just gaped at him.

I drove us home and still, I said nothing. I didn’t even know what to say any more. I knew where he was going and why. I know my son well.

Rejection started when he was born. I waddled into the birthing room as one and a mere twenty-four hours later, we were two. The nurse helped me get him to my breast, and I swear I’ve never seen a more pissed off baby. He launched his gigantic head atop that tiny neck backwards, nearly toppling off me, clearly disgusted that someone might even SUGGEST such an uncivilized thing as BREASTFEEDING.

Breastfeeding didn’t work. Bottle-feeding only worked if I didn’t hold him. I’d put him in his bouncy seat and sit next to him, holding his bottle as he watched anything but me. The guilt was tremendous. Maybe Ben sensed my inherent evil or something.

My mother didn’t help. “I’d NEVER let a baby sit on the floor while taking a bottle,” she’d say to me as I fed my child. But I’d already tried to cuddle him closely, only to have him scream like I’d poured molten steel on him. Maybe she’d never let her baby lay on the floor to feed him, but Ben was not her baby.

The older he got, the worse I felt. The pain was exquisite. It was compounded when I enrolled in school full-time to earn my nursing degree while working part-time as a waitress/bartender over the weekends as I didn’t see my son much.

He didn’t care.

I, however, cared very, very much.

My heart shattered each time I’d stop and think about The Situation With My Son Ben. I was rearranging my life for this tiny boy with a shock of black hair so thick it looked like a wig and he hated me.

These were the days, you must remember, that autism was not commonly discussed. No one walked, ran, drove, pledged, or otherwise attempted a “cure.” ASD, PDD, SPD weren’t on the lips of every mini-van driving soccer mom. In 2003, when Ben was diagnosed at age two, I was on my own.

I was also relieved by that diagnosis. Autism.

The concept of autism didn’t send me reeling, I guess, because I’d already been reeling for so long. Knowing all that rejection wasn’t because I was an evil soul-sucking wench of a mother was such a relief that I cried. Then I stopped making it about me and got my kid into therapy. Loads of it.

Autism is, after all, just a diagnosis. And a diagnosis is just a word. I wasn’t going to let that word rule my life.

And I haven’t.

The pain of rejection, though, that never seems to go away. I love my son just as he is with every inch of my heart. I always will.

I sat there, my heart hurting and my hands numb from the cold as I drove the two of us home last week. I sat at my computer trying to eek out a half-hearted Christmas post, forcing jollity out of my fingertips. I sat there trying to pretend I was okay, that the pangs of rejection didn’t burn brightly in my chest, and I remembered that sometimes, as my throat burned with threatened tears, it’s okay not to know how I feel.

It’s okay to wish that it was all different somehow.

Then, my first son, Ben, without whom I would be nothing, approaches me with open arms and says, “I love you, Mom,” and I know that even if I never understand any of it, it’s all just as it should be. And that has to be enough.