“Mom, do I have autism?” my eldest peered at me through the eyes so dark and deep I could easily be swallowed by them.
My heart stopped a moment, my dancing cactus videos forgotten entirely, unsure of how to proceed. It was a good question. Something we had never spoken of because, well, it never mattered.
The answer was yes, yes he did have Asperger Syndrome. He’d had it since I’d pushed him out of my delicate girl parts, trying desperately to bring him to my breast on the birthing table, only to have him shriek in horror and disgust, something he did with alarming frequency for the next several years.
Clothes made him crazy, their textures too binding, the tags an endless source of frustration. Being held, something most babies (I’d heard) loved, well, he’d prefer to lay on his back, watching his mobile spin for hours upon end, the deep greens and blues soothing him in a way I never could. It broke my heart until it didn’t anymore because eventually, I stopped trying to scoop him on up, cuddle him close. I loved him from afar, my tears dotting his crib sheet as I stood above him, wishing I knew what went on in that glorious brain of his.
By age one, his love of the planets was obsessive. While he couldn’t tell me the name of the animals that lived in the house (dog, cat, for those interested), he could tell me all of the names of the moons of Jupiter – his favorite planet – and identify them from even the grainiest pictures.
Speech severely delayed, by age two, he was enrolled in both speech and occupational therapy, dutifully trucking back and forth to the Early Intervention center, day after ever-loving day. Eventually, he’d been able to touch varying textures of dry rice and beans, eat few things beyond his standard diet of oatmeal, graham crackers and cheese, and adapt his fine motor skills so that he could pinch small things, hold a crayon.
Speech therapy continued until his fourth year. He’d gone from mostly non-verbal – excepting, of course, anything related to the cosmos – to using a handful of words; more each day.
Our relationship had developed, too. While I’d still feel that scar tissue tightening up whenever he chose anyone but me to love on, I accepted that his love was different; unique. Just like his beautiful brain. It was simply different. Not wrong, not right, not better or worse, just different.
I accepted different.
Through all of this, we didn’t bother with labels. Not in my house. Ben’s Asperger Syndrome was no different than saying he’d inherited both my brown hair and long eyelashes. It was just a part of who he was. And that didn’t deserve a label or hushed meetings around the table.
I knew the slippery-slope of labeling and I wanted him to grow up as himself, not as what a syndrome may or may not dictate about him.
So when, at age ten, he asked me if he had autism, I didn’t know quite what to say.
So, with widened eyes, I spoke the truth:
“You have something called Asperger Syndrome. You have since you were a baby. You went through speech therapy to help you talk and other therapies to help you eat. Remember how your sister had speech therapy? You did too.”
His eyes opened so largely I feared they would fall from their sockets.
“But I’m okay?” he asked.
“You, like your grandfather, your uncle (my brother) and your own brother, well, you’re just quirky. You have things about you that are different than everyone else. But really, EVERYONE is different. Different is awesome. So don’t think about yourself as a “syndrome,” think of yourself as Ben. Because THAT is who you are.”
He smiled, the crooked teeth he’d gotten from his paternal grandmother peeking through, making him look like a bobble-headed jack-o-lantern.
“Yeah. You’re right. I’m just Ben.”
“I wouldn’t have you any other way.”
He then scampered off to celebrate his Ben-ness with his siblings.
Daily flash mobs would be mandatory. Preferably in front of my house. Why? Because who can be gloomy when THIS is happening?
Instead of being powered by gasoline or electricity or flux capacitors, cars will be run entirely on music by Prince.
When the recyclables gather in a large enough pile, they will simply band together like a Transformer and walk their way to the recycling plant.
Childbearing will make the female body MORE youthful and beautiful, rather than causing breasts to look like two oranges in tube socks.
Coffee will be the national beverage and mandatory for anyone over the age of seven.
Life on the Internet will no longer be measured in numbers (see also: Klout) but upon hilarity of cat videos.
Split pea soup will be banned because, well, obviously no one should eat something that appears to have been shot out of my baby’s pooper.
Babies will be born sleeping through the night, doing complex geometric equations, and ready to go to work to buy their parents diamonds.
Pants will remain entirely optional, even in polite company.
There will be no “polite company.”
People who use the words “organic,” “sustainable,” and/or “nosh” in the same paragraph will be banned to the ALOT Island along with anyone who substitutes ellipses for periods.
Moon Pies will ACTUALLY be made of bits of the moon.
Detergents that don’t include OxyClean will be banned. The legacy of Billy Motherfucking Mays must live!
Steve Irwin coined the “stupid people antagonizing wild animals” television shows. Which got him dead. Which means that no one should repeat the formula.
For the love of all that is holy, no more reality singing competitions. American Idol was the clear winner and it’s gone the way of the condor. Or whatever we’re calling Paula Abdul these days.
Dish, Pranksters. What else should we add? Because when I rule the Universe, you’re all co-rulers.
On days like today, when I’ve woken to a flood of emails, texts, and The Twitter DM’s, all about someone who is desperate and suicidal, only to have to go find the post she’s written for Band Back Together, edit it (or have someone else do it), rearrange the schedule, then beg The Brains Behind The Band to help promote it.
(P.S. if you want to join the Brains Behind The Band, PLEASE email me at firstname.lastname@example.org)
This isn’t, Pranksters, anything new. In fact, this is pretty par for the course these days. Most of my days start and end like this.
In between dealing with the fall-out from the suicidal post, checking to see if we had any other posts that required OMG NAO publishing, it’s already 1:30 and I’m spent. Exhausted. Ready to crawl back into bed, hoping that I’ll be able to bring the funny back tomorrow. Because today, it ain’t happening.
It was with great glee that I watched the Social Network a couple of months ago. I had The Twitter on the ready, prepared to rip Zuckerberg a new pooper, when, right at the beginning of the movie, he said the words that forever won him a spot in my cold, dark heart. When asked what The Facebook would be, he replied, “I don’t know yet.”
That’s precisely what happened on Band Back Together. When I launched it last September, I honestly DIDN’T know what it would be. People asked me constantly what the site was about and I couldn’t give them anything but a canned answer. What it has become is so much more than I’d dreamed. I’m beyond proud. Beyond grateful. Beyond amazed. Beyond honored for all of the brave souls who have – and continue – shared their stories with us.
Everyone has a story.
I hope you share yours with us.
Because even on days like today, when my funny has been banished to the ALOT Island, when I’m frazzled and running around like a zombie chicken, I know that we’re making a difference.
That, Pranksters, is worth all the funny in the world.
P.S. Wasn’t kidding about the offer to join The Brains. Holler at me, please.
P.P.S. For my baby loss mamas, we’re doing a Wall of Remembrance on the site in addition to the one I do each year here. Here’s more information about that wall.