Won’t Be Idle With Despair

If I could tell the world just one thing…

The January air was cold, crisp, the sort of Chicago winter that seared your boogers to the insides of your nose and made your eyes water, your tears freezing as soon as they emerged from your tear ducts. I was just crossing the river, the grey of the cold January afternoon oppressively suffocating me as I noted the chunks of ice floating down the river. I wished I could fall down there with them, and wake up to a new day, a new life.

I was driving my dad’s old car, the roads wet and icy, the salt making a jaunty click-click sound against the bottom of my red Acura Integra, the one I’d inherited to replace my del Sol for something, well, with a backseat. A backseat that held one tiny infant, with a shock of black hair who squalled and cried, even as we drove. I hadn’t slept in days. To keep me awake, and to drown out the sound of my tiny sons wails, I put on one of my most favorite Christmas albums.

….it’d be that we’re all okay.

I was baffled by my new baby.

His dislikes included me, air, food, being touched, the world, gravity, the universe, and, well, life. Babies are supposed to love this shit, right? If babies are supposed to love this shit, then it’s clearly some character flaw of mine that he couldn’t even look me in the eyes.

In 2001, autism wasn’t The Thing – no one walked, or ran, for a cure – no one really knew much about it. And I certainly didn’t suspect that he had a problem.

He was just…temperamental. And he probably sensed that I was a bad mother, a piece of shit person, and could tell that he’d drawn the shitty card when he was born to me.

In the end, only kindness matters.

My heart was as heavy and oppressive, like my mood.

I’d waddled back home at twenty, pregnant with my young son, tail between my proverbial legs. My parents graciously allowed me back into their home and helped me set up a nursery for him, but, like any other kind deed, this one came with strings so long that I nearly hung myself on them. And my son’s father, angry that I’d had the audacity to get pregnant while on birth control, (while we get along now) well, he wasn’t particularly kind to me.

The last person I recalled being truly kind to me was one of the nurses in the hospital as she wheeled me out to the car with my new baby.

Five months before.

Not to worry, because worry is wasteful and useless in times like these.

Since I could recall, I’d dreamed of going to medical school and becoming a doctor. I’d never considered having children, never thought that I’d be a parent but here I was. And there he was.

I couldn’t figure out what next. If I wanted a life with my son, I’d have to give up on the only dream I’d ever known – becoming a doctor. If I didn’t want a life with my son, well, I could go to medical school, see him on weekends and in between rotations, living with my parents until I was forty, but despite his dislike of me, I was pretty fond of the little guy.

Stuck between a rock and a bigger rock, the future a black question mark of yawning uncertainty, I drove aimlessly around, trying to make the kid sleep, trying to outrun my demons, trying to figure out what next.

I won’t be made useless.

I’d never not had a plan before. It was like waking up to realize I’d lost the right half of my body. I’d dreamed of medical school since I was a toddler – the dream was over. But what to fill it with?

I didn’t have that answer. I didn’t know where to look for an answer. I didn’t know what to do next. The emptiness was overwhelming.

My hands are small I know, but they’re not yours, they are my own.

Everywhere I turned, someone else was telling me what to do. What not to do. How I was ruining my child. How I needed to do this or that. How I shouldn’t ever think of doing this again. I was twenty-one – there was no one in my corner telling me that I could do it if I just got all EYE OF THE MOTHERFUCKING TIGER about it.

I’ll gather myself around my fears.

Maybe I wasn’t the most qualified of people to raise my son; maybe my brother and sister-in-law were (my mother had asked them if they’d adopt my son should I “go off the rails on a crazy train”). Maybe he was better off without me. But he wasn’t going to get that chance. Whether he liked it or not, I was going to parent the SHIT out of him. I was gonna get him a family and we were going to make it.

For light does the darkness most fear.

The dark days outnumbered the light ones for a good long time. I had to learn to smile and nod as I was told that I was doing a bad job at parenting. Every jab, every poke, every complaint about me, I learned to smile and nod. “Yes, that’s right, I am a bad mother, you’re so right.” I ground my teeth into nubs and smiled.

Soon, my path veered dramatically. I entered nursing school, found a new plan and met the man I would marry. The man who would encourage me, after only reading emails I’d sent, to write.

I won’t be made useless.

Maybe my “plan” was gone – so what? The world was a big place – plenty of room for new plans. I would not be made useless. I would do something to make my small boy proud. I’d get him the family he needed, I’d get away from his father, and I’d give him the siblings that helped the autistic child emerge from his own world to join ours.

I did. I found my words as he found his, and together we were able to carve out a new plan – a better plan.

I won’t be idle with despair.

There have been months, years full of despair, sadness. My heart, however, has never been as empty as it was that day, crossing the mighty Fox River, me against the world. If I could tell my former self that day that, “hey, your life will be nothing like you thought it would be, but that’s okay,” I would. I’d give that girl a hug. I’d let her know that it was okay to be scared. It was okay to feel weak and powerless because, well, she was.

But not deep inside. Deep inside, there was a drive, a dream, to become more. To be better. To do something with herself.

And she has.

And I will.

I am never broken.

Heart. Stop.

“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.

Legacy

I knew from a very young age what I was going to be when I grew up. While the other kids focused their sights upon flying into space or fighting fires, in kindergarten I neatly drew a picture of myself, one that my mother has framed somewhere, that says, “Rebecca Sherrick” “Obstetrician.”

Because that was what I planned to be.

Would it have worked out if I hadn’t popped Benjamin from my nether regions, a pregnancy unexpected, a life forever changed by the furious meeting of two gametes?

I honestly can’t say. Who can see what might-have-been when what-is is right in front of our faces?

When I went back to school, a single mother with an autistic baby slung ’round her hip, I re-enrolled (which is highly UNLIKE Rick Rolling) as a nursing student, which meant two things:

a) None of the credits I’d obtained during my brief stint as a Bio/Chem major were accepted and I had to re-enroll in different, easier versions of similar classes.

2) I had to come to terms with letting go of a dream I’d had as long as I can recall.

The first year of pre-req’s was heaven for me. I’d already completed the more complicated and challenging versions of the same classes, so I quickly rose to the top of the class. I was chosen to TA for numerous science classes, putting me smack-dab back into the lab.

I couldn’t have been happier.

I left my first class as Student Nurse Aunt Becky in tears. I’m sure I looked half-insane, walking to the train, my bag full of books I didn’t give a shit about, openly sobbing the kind of ugly cry that comes from a broken heart.

Rather than entrench myself in sorrow any longer than I had to, I simply made new plans. I’d re-enroll in school and become a microbiologist once my son was old “enough.” I’d juggled single parenthood and schooling as much as I ever wanted to and I intended to see at least some fraction of the kid’s childhood.

I did and I have.

Nursing career handily abandoned as, for the first time ever, I was able to stay home with my son, things didn’t go quite as expected. The quirks I still found so charming made for lonely company as he preferred to live inside his head to being with his mother. Coming off an over-worked, beat-my-A’s-with-more-A’s high, I had hours upon hours each day to fill.

With something. Anything to make my life feel worth living again.

I obsessed over the grout between bathroom tiles – which, no matter how many toothbrushes I wore to nubs- could never quite come clean, my son happily watched the same video about the planets over and over. I waited for something, anything to tell me what the fuck I was supposed to do next.

“Why don’t you start a blog?” The Daver asked after I tearfully wept, once again, that “I hadn’t worked my ass off to sit around and wonder which fucking brand of dishsoap was better.”

I couldn’t have thought of anything I’d like to have done less than blogging. I’d never so much kept a journal, so blogging, writing down my thoughts so that someone, somewhere could be equally bored by them?

Fuck no.

Until I decided to do it.

Learning that I could write things that didn’t involve this:

was like learning I could breathe underwater. All this time that I tried to find meaning in the bathroom tiles had been for nothing. Because I had this ability and I could use it.

And now I do.

I’ve spent nearly four years here at Mommy Wants Vodka, and three before that at Mushroom Printing, telling stories. Some good, some awful, most mediocre. I’ve used my words to let you into my world. To see things as I do. To touch each of you reading these words in some way, even if it’s a disgusted “God, this chick sucks.”

The words I have written, the friends I have made, the connections I’ve foraged has been so much more than I’d anticipated. I have been beyond blessed.

And yet, I’ve been thinking a lot lately about going back into academia. To return to those glorious calculations and those beautiful microscopes, leaving the world of words squarely in my past. I wonder if that’s even possible; to shut one beloved door so firmly. I don’t have an answer.

So I’m left wondering: is this my legacy? A few pixels blinking on your computer screen? Words turned into sentences turned into paragraphs?

Moreover, is this enough?

The Way We Were

The Realtor described my basement as an “in-law arrangement.” It baffled me when I saw it because it was two finished rooms, a wet bar, and a bathroom complete with whirlpool bathtub.

It wasn’t until I saw the room with the washing machine and dryer (no carpeting or prettying up here, folks) that I got what she meant: a Dungeon. I could totally chain up rogue parents who wanted to move in against the walls, throw leftover chicken bones down the laundry chute and hell, there was even a (laundry) sink for water!

I crossed off “in-law arrangement” and wrote in “Awesome Dungeon” on the glossy brochure.

We made an offer the next day.

For quite awhile, The Dungeon was empty. We’d moved from a three-bedroom condo with no storage to a three-floor house with all kinds of storage, and at the time, there were only three of us. The amount of space felt gratuitous.

Eventually, I bought shelving and Rubbermaid bins, carefully sorted our stuff (I am, after all, my father’s daughter), labeled them with a Sharpie (I heart Sharpies) and stowed them on the shelves.

Then, well, life exploded.

The Dungeon turned into The Room Where We Shove Crap We Don’t Know What Else To Do With (Bonus! Sorted Shelved Stuffs).

My coveted fiber-optic Christmas tree? Plop it there. Alex’s Halloweenier Costume? Eh, put it in The Dungeon. That Ugly Mirror I Bought But Never Hung Because It’s So Fug? Put ‘er down there. Deal later. The picture of the majestic jaguar that appeared out of nowhere and is too bizarre for even me to hang? Leave there; give to Dave’s Mom.

Cleaning The Dungeon is something I’ve wanted to take care of for a long time, and this weekend, after a long, anguished fight with The Daver, I saw no better time to begin. Some people eat their emotions, some drink them, others escape through television and movies. Me? I strap on my Super Becky Overachiever cape. I purge, I organize, and I clean. It helps organize my brain and process these weird things that you people call ‘feelings.’

(feelings are bullshit)

I started in the middle of the room; tossing what we didn’t need, storing what we did, and donating anything salvageable. Within a couple of hours, I’d cleared a path to the shelves. Even with my careful labels, I no longer knew what they really contained.

I hauled out a large unlabeled blue bin and popped it open.

Freeze-frame.

The box was full of craft supplies.

We all know that I’m as crafty as a blind woodchuck, but those supplies hadn’t been for me. Shit, I’d sooner gnaw off my fingers than craft something.

Standing in that basement, it was as though time had been frozen inside that box.

I’d birthed a baby boy, Benjamin, in August of 2001. In November, I’d gone back to work slinging pizza and beer. I enrolled in nursing school full-time in December. I worked weekends, cramming organic chemistry compounds into my brain between tables. Weekdays were spent in school, weeknights I studied. 7 days a week, no summers off, no rest for the wickedly weary.

My three-year old son watched me march across that stage as I graduated at the top of my nursing school class. I’d so wanted to do right by him. Benjamin, son of my right side, named that, hoping he’d pick up the very best bits of me. My right sides.

Ben and I moved into the condo in Oak Park post-graduation. I’d taken time off before the national nursing board exams, anxiously excited about being a Mom – a real one – for the first time.

I’d neglected to remember one thing. One very important thing.

All of those years I frantically ran around, trying to do right by him, I’d ignored it; reassured myself it would be okay, “when we were a real family.”

My son, Benjamin is autistic. Autistic kids are like Siamese Cats. They choose Their Person (or people) and That’s It. The rest of the world can rot in fucking hell so long as Their Person is near.

I was not his person.

Never have been. Not at birth, not after birth, not ever. We mostly got along but I was most assuredly Not His Person.

His Person was my mother, who now lived 45 minutes away. Dave was Another Person, but Dave also worked long hours, frequently not home until bedtime. Even when home, there was always more work.

Just me and my son. All those years I’d spent longing to be a real family, to feel like a mother, to be with my son…he hated it.

Rejection seeped in.

I went to bed alone each night. Dave working in the office; Ben fast asleep under the mural of The Planets we’d painstakingly painted, emptiness creeping inside me. “Tomorrow, it will get better,” I’d try and reassure myself, denying the sadness sitting on my chest, making it hard to breathe. “This is what you wanted. How can you be sad?”

Each night, the emptiness looming, I reassured myself with something else; another bright side.

When my friends complained about my son’s eating habits, my inability to “go out and party,” and how obnoxious my kid could be, I wrote it off. They were single and had no kids. I never allowed myself to feel hurt by that…or anything else.

When it was clear that Dave’s job was his wife, well, “he was doing what he had to to support his family. Look at the economy! This is what you wanted!”

My son watched a documentary about the Planets and my husband worked constantly. I’d gone from feeling purposeful to puttering about the condo; a shell of my former self, in a few short weeks.

I tried to fill my days. I swept the floors twice daily, washed them at least once. I washed and rewashed dishes. I scrubbed the bathroom tile with a toothbrush. Anything to stave off the loneliness.

Halloween-time, I thought maybe Ben and I could find some common ground: crafts! Off to the craft store, we went, where I bought a fuckton of crafty shit: paper, glue, crayons, scissors, glitter, stuff I’d have gone apeshit for as a kid. Ben was too busy organizing the shelf to notice. Oh well.

Panting and sweaty, I lugged our booty up to the third floor and spread it out on the dining room table. We were going to make MOTHERFUCKING PUMPKINS.

Except Ben had turned his Planets movie and was entirely uninterested in making MOTHERFUCKING PUMPKINS with me. I paused the movie. He wept for Grandma. That rejection finally opened a deep chasm of emptiness inside me.

Halfheartedly, I led him to our Craft Project.

Big, fake, cheerful smile on my face, I painted my MOTHERFUCKING PUMPKIN orange. Ben sat there, weeping for my mother. Smiling so hard that it hurt, I painted his pumpkin, too. He sobbed. I sent him back to the movie.

Then, I sat back down in front of the stupid pile of art supplies, buried my head in my hands, and I started to cry, too. Not the delicate kind of Soap Opera Cry, but the desperate, hurt, miserable cry that emanates from your bones.

I shoved the craft crap into that blue bin where it sat untouched for many years.

A perfectly captured freeze-frame of the way things were.

I held the tube of orange paint and overhead, I heard my three children thundering about, their footfalls booming as they happily chased each other. Their laughter echoing around the house; overcome with joy. I smiled as I repacked the paint, saving it for a cooped-up “I’m BOOOORED” day.

As I closed the lid, I marveled at the way we once were.

And the way we now are.

college-graduation-aunt-becky

The way we were.

ben-makes-a-pumpkin

The way we are.

How The Light Gets In

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:

Encephalocele - 2 years later
Amelia Grace

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

Encephalocele Surgery
Amelia's Scar
Encephalocele
The Shirt Says It All
Encephalocele
Sparkle Princess of the Bells

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.

heartburn

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.


Now, You Are Nine

Dear Benjamin,

I’m sorry that I don’t write you a monthly letter like Dooce, but I’m afraid that those would become painfully boring and mostly about me because, let’s face it, by nine, what you do each month isn’t much different. I, on the other hand, am endlessly entertaining (to myself). Also, it would require me to do math and math is hard.

I hear a lot of parents talk about how their kid changed their lives, and it’s not that I don’t understand what they mean, but you, my son, you really did change my life. The moment I grabbed that pregnancy test, recently bathed in my own urine, and said, “that can’t be a motherfucking line,” (forgive my language; you always do) because trust me when I say I was TAKING PRECAUTIONS, my life was forever changed.

I went from a carefree unmarried twenty-year old whose main concern was where to find her next twenty bucks for a tank of gas to someone who had to figure out what to do next. So, I scrapped my life’s plans, ditched the whole “Imma be a DOCTOR” idea, waddled back home to my parents, enrolled in nursing school, and then three weeks after I turned twenty-one, I pushed your gigantic head out of my vagina.

Yeah, I’d say that’s a little different than having to give up date night.

But there you were. All 7 pounds 13 ounces of you, with a mane of black hair so shocking that I thought someone had put a wig on you. What amazed me is that everyone was so astounded that I loved you. Over and over I heard, “wow, you really DO love that baby.”

Apparently, I have one hell of a poker face. Also: of COURSE I fucking love you.

This year, though, was the year I was dreading. It was the year I’d been dreading for years, and when I saw it barreling down upon us, my heart shattered.

This was the year you realized you were different than the rest of the world.

Our uniqueness can be a gift, but sometimes, in order to blend in with the rest of the world, we have to put those aside and learn things that come so easily to other people. This year you are trying so hard to understand feelings. Where your brother can look at someone and easily detect what mood they are in, to you, it’s as complex as the Pythagorean theorem.

Does that face mean anger? Sadness? Happiness? It’s a puzzle to you, but for the first time, you realized that just because you can’t understand it, doesn’t mean that you shouldn’t. It breaks my heart to see you struggle with this, but as you told me yourself, you don’t want to spend your life hurting others. So we practice. Diligently, you practice, and day after day you tell me excitedly, “MOM! I think I’m FINALLY getting this emotion thing!”

My heart smiles, because it’s just such a Ben thing to say.

I am the one who named you. I don’t know if you know that, but I chose your name. Benjamin means “son of the right side” and I hope that, true to your name, you inherited all of the best parts of me. All of the right parts of me.

If the first nine years are any indication, I think we’re both doing okay.

Happy, Happy Number Niner, Benjamin Max,

Love,

Mom

Blue, Baby, Blue

Today, April 2, is World Autism Day, and I realized that although I have an autistic child, it’s not something I talk about very often. I realized that it’s unfortunate because I do reach a lot of people who could benefit from knowing that they’re not alone. The isolation of having a special needs child was–and continues to be–the worst part of it.

So to all of you out there reading this: you’re not alone.

—————-

Ben’s first birthday party was the hugest blow-out affair he was certain never to remember. The day was complete with everything a one year old could care less about: hula girl pinata, keg of light beer (for added class, of course), hamburgers and the attendance of pretty much everyone I’d ever met. It was a massive, ebullient celebration. I felt was giving the universe the finger while celebrating the fact that despite the year behind us, despite our rocky beginning we’d made it. While it was just the two of us, we were all that we needed.

We’d done it. Ben and I, together, we had done it.

While I was busily trying to forget that the road ahead wasn’t likely to be an easy one, for that day, for that one single day, I was finally able to forget about all of our problems and focus my attentions on celebrating the life of a little boy who had now been through one entire rotation of our planet. I was so, so proud of both of us.

He, of course, couldn’t have cared less about the party, the guests, or the massive three foot long cake that triumphantly proclaimed “Happy First Birthday, Benner!” Even the sprawling pile of presents couldn’t entice Ben away from the game he had been intently playing, which involved spinning a frisbee on the hardwood floor.

While I didn’t understand exactly what he was doing, he looked contented enough, spinning and spinning the disc around and around, so I just let him be and watched him from afar. Over and over he would put the disc on end only to push it over and watch as it spun lopsidedly around the floor. While I didn’t mind the game itself, I hated the blank look that he got on his face while he did it.

I tried to write it off as intense concentration but it looked as though he was a robot whose circuits had misfired, leaving him vacant-eyed and slack-jawed. He appeared near-catatonia and I often wondered if, while in this fugue state, he were deaf as well as strange. There seemed, at times, to be no rousing him.

The concentration and intensity he displayed at one year of age spinning that damn disc reminded me very much of the way my parents’ neurotic German Shepard would worry a bone. With freakishly intense concentration bordering, in my opinion, on obsession. He was bound and determined to make that gaily colored plastic disc do something incredibly specific, but whatever that was eluded me entirely.

Anything and everything that could spin, I had learned, was a source of pleasure for Ben. From perusing the ceiling fans at the hardware store to laying down in his crib for hours on end while his mobile swung lazily above him, if it spun, it made him happy. Or at least, it soothed the savage beast within him, which was as close to true bliss as I had seen my son. But whenever the spinning of the frisbee didn’t meet expectations, he would freak the hell out and have what I now called “a meltdown.”

Meltdowns were, I presumed, what the parenting books described as a temper-tantrum. Since he was my firstborn, I had no idea that these freak-out sessions were far, far more involved than a typical tantrum ever could be. His emotions swam in him like swirling mercury, just barely below the surface, readily pulled up and out in a moment, like a sudden storm cloud.

Sometimes they would spring up when his hand gestures didn’t suffice, because I simply didn’t understand what my little non-verbal one was trying to tell me. Other times, it was because an inanimate object wouldn’t do exactly what it was that he’d wanted it desperately to do. But most of all, they were unpredictable.

On the day of his birthday party he was eventually coaxed away from his intricate game sans meltdown by the promise of cake. That delicious sugary confection was easily the highlight of the party for him. I strapped him into his never-used high chair—at one year of age, my son wouldn’t even entertain the idea of foods other than those on his White Food Only (oatmeal, graham crackers and saltines) diet—where he looked immediately uncertain.

Was this crazy woman going to try and feed him again? I could see the hesitation and near panic written on his chubby-cheeked face. After a particularly rousing rendition of “Happy Birthday,” in which we singers were so off-key that poor Ben winced when we began and looked pained while we sang horribly, I cut into his massive, sugared monstrosity of a cake.

I plunked the first piece of cake down in front of him, wondering if he’d dare touch the squishy texture of it and the next thing I knew, he was shoving fistful of chocolate cake into his gaping maw with a speed I didn’t know he could muster. The chocolate cake was a smash hit. Score one for sugar! I inwardly rallied, happy that something about my son appeared to be normal.

On and on, he shoveled cake into his mouth, most often missing his target entirely. I began to notice that the frosting and cake bits were making their ways dangerously close to his eyes, and as I pictured an ER trip where I had to explain why my one year old was now blind from frosting and cake bits to the eyes. I promptly swooped him out of his highchair and had to hose him down to remove the chocolate, which was stuck in places I didn’t know cake could possibly go.

After the party died down and all the gifts were opened (primarily by the adults) I noticed that Ben was gifted a copy of a Baby Einstein DVD called The Planets. After some hemming and hawing on my part since reading that the American Academy of Pediatrics was strongly opposed to allowing children that young to watch television, one day as I was trying to do some homework quietly, I popped it in the DVD player.

I figured that the American Academy of Pediatrics didn’t have the issue of trying to finish a ten page research paper on the use of secret police (Ministerium für Staatssicherheit) during the division of East and West Germany during the 1980’s while entertaining a toddler and that they could take their ever-loving standards and shove them where the sun don’t shine. And if they didn’t care for that answer, they could always come over and babysit for me.

Even though he’d occasionally caught a Sesame Street rerun on the boob tube, I’d never seen the look on his small face peering out from his dark brown bangs before once the television screen began to fill with beautiful orbs and lilting melodies. It took me a couple of minutes to properly identify it. Ben looked, to my shock, as close to happy as I’d ever seen him.

The thirty minute movie captivated him and he danced wildly to the music, flapped his arms at the pictures of the planets, while even occasionally smiling. My own son was smiling! I was utterly stupefied. Even the spinning, which soothed him immensely, didn’t have the same sort of emotional response that watching this video did. It’s safe to say that not one single thing in his young life had ever evoked such a response. Nothing.

I mulled this development over as the show played on, my paper forgotten entirely.

People–even his own wonderful, doting and gorgeous mother–Ben could have cared less about, a reaction that I had expected a full 16 years later from him. As a teen, I understood this, as a baby, then a toddler, I was flabbergasted. I’d thought that all babies were programmed at birth to like people.

Especially their mothers, whom, my psychology texts advised, could soothe them by mere scent alone. My own son, however, could have cared less if I lived and breathed, providing someone was around to fill his sippy cups and bowls of oatmeal. He was not, as I feared, turning out to be much of a people person. His need for socialization and interaction was simply non-existent.

Which was hard for me to accept since I had been known to both talk paint off walls and feel suffocated without the telephone affixed to my ear. To each their own, I told myself over and over. Not everyone has the desperate need to be as social as you are, Becky.

After the thirty minute DVD returned to the menu, filling the room with a loop from Holst’s Mars Suite, he indicated through a series of hand-gestures–as he rarely opened his mouth to speak–that he’d like to watch the video again. Still shocked and amazed by this new side of my son, I carefully depressed the play button and watched his reaction closely.

Once again, as the movie began and the heavenly bodies were depicted on the screen, he was enraptured. For all of the soothing and comforting that he would not accept from us, this movie seemed to do it all and more. I’d never seen my mute, strange son so happy and contented in his entire life.

Over and over we’d watch this DVD until I probably could have acted the entire feature out by myself without the slightest bit of prompting. Although I frequently had fantasies about slaying the DVD in a ritual bonfire once hearing the opening chimey music made me break out into a cold sweat, but he never tired of it. Ever. I couldn’t believe the devotion to which he watched this video. I’d honestly never seen anything like it in all of my life.

Day after day, viewing after dreaded viewing Ben soaked it all in, soon able to not only name the nine planets by heart, but then learning the names of their moons. I followed his lead and ran with the whole obsession. It seemed the prudent thing to do. One afternoon, away from school for a blessed moment, I took this pint-sized toddler to the bookstore to pick out a book of his choosing. He found a copy of an encyclopedia of the planets, designed for high school kids and became immediately enamored.

Before bed we read it, between viewings of his DVD we read it, we read it until the spine cracked and the pages were well worn, and he absorbed every single piece of information inside it’s cracked covers.

While his compatriots in the proverbial sandbox were learning what sound a doggie makes (woof, woof, for those not in the know), Ben was learning to differentiate and name the moons of Jupiter, all sixty-three of them and had become able to identify each and every one, no matter how blurry and out of focus the picture was.

His favorite was Io, but Ganymede was a close second. He would spend hours and hours constructing elaborate solar systems with all of his toys, and would try his best to get the distances between them as accurate as possible when working with Little People and balls.

It was quite the uncanny concentration and devotion for someone who was not even two years old. I don’t need to tell you that this was at the same age when I learned how to eat my own boogers and how best to fart on the dog without making her run away.

The depth of his knowledge was both freakish and amazing; awesome and terrible at the same time.

It appeared as though finally, finally something was able to provide the comfort for Ben that no one else could give him. While the planets was certainly not the teddy bear of soft blankie that I’d have imagined, it was something and it was his.

At night, he’d curl up in his crib with his tousled brown hair mussed and in his face, holding his encyclopedia of the planets and for a moment, watching him, I tried desperately forget my sadness that it wasn’t me who was comforting him.

Sometimes I’d cry, standing above his crib and looking down on his sweet face, hurting badly from the rejection. Other times, I’d just smile, proud of my son. My brilliant little son.

The prodigy I’d always wanted to be.

Despite how thrilled I was at my son proving to be a veritable baby genius, I knew that I would have to at least attempt to broaden his limited horizons, and my first stop to try and do so was to take him to the zoo.

Kids, I thought, were supposed to like zoos, and in the name of opening up Ben’s horizons and exposing him to different things, I thought that the zoo might be just the ticket into his head. If he didn’t like the piddly animals we had at home, perhaps the more exotic animals would do the trick. What kid doesn’t like cool exotic animals? I asked myself stupidly before we trundled off to the zoo.

The answer to that one was stunningly simple: my kid. MY kid didn’t like the zoo. Having eschewed the stroller nearly a year before because, I suppose, he was too cool for it, we walked around, me peering into all of the cages and trying to point out various types of cats, birds and reptiles, all to no avail.

Ben was far more interested in the gravel beneath our feet, where he’d occasionally drop down and, if I wasn’t quick enough to swoop him back up, shove some into his mouth. I couldn’t get the kid to eat anything outside of his White Stuff Only diet, and yet here he was, eating rocks.

After about an hour or so, we were both hot, dusty and crabby, so we set a course for home. The stimulation of all of the people and the different location had taken it’s toll on poor Ben, who screamed and screamed for half of the ride home until he fell into a fitful sleep. Okay, so the zoo was a bust.

No big loss.

My next stop on my Let’s Introduce My Kid To More Stuff train was the aquarium. I assumed that since Ben was a huge fan of motion and dancing (even if he did dance with the grace his momma gave him. By which I mean none whatsoever) he’d get a huge charge out of seeing all of the fish swimming to and fro.

While he did humor me for about an hour, it appeared that I was not going to be raising an ichthyologist. Instead, he made an elaborate approximation of the solar system with his popcorn in the cafeteria and after I caught him licking the shiny linoleum, I decided that it was probably time to take him home again.

Once again, the stimulation from the throngs of people and all of the bright lights proved to be too much for wee Ben, who screamed so loudly that I actually pulled over to the side of the highway and removed his clothes to make sure he wasn’t being pinched by a savage button or a rouge tag. No button, no pinching, no dreaded tags, just an overstimulated child.

The last stop on my crazy train to have my child visit all of the wonderful kid-friendly attractions in the area was the Adler Planetarium, easily one of the most beautiful buildings on the shoreline of Chicago.

While to some, this might have been the logical FIRST stop on my Open My Child’s Horizons Up tour, but you have to remember, it was likely that he knew more than any of the exhibits would be able to teach him. It was likely that he knew more than most of the guest speakers that lectured there. So, I wasn’t certain if this would really be up to his insanely high standards.

Turns out that all my worrying was for naught because the minute we made it through those doors, Ben was in heaven. My normally non-verbal son toddled happily between the models of each of the planets, his diaper poking out of the top of his jeans rattling off the names of the planets properly.

His moment of pure and unadulterated ecstasy came when he found a huge poster that showed detailed pictures of most of the moons of Jupiter.

While I couldn’t imagine looking at anything more boring than this, for some reason, this brought him intense joy. It appeared that it didn’t matter how dumbed down the exhibits were for my one year old son, The Adler was a hit, and I immediately signed us up for a year membership. If you can’t beat ’em, join ’em, right?

Relieved that we had finally found some common ground where we could stand firmly together, after several hours, I dragged him out of there and home again. Once he hit his cow-print car seat, he fell instantly asleep and was snoring before I reached the tollway.

Maybe I couldn’t give him everything I’d wanted, maybe I’d never be the what comforted him, but for that small moment in time, we were at peace with one another. I’d accepted him on his own level and while I’m not certain that he accepted me on mine, I like to imagine that he did.

My own heart would be broken over and over again many times by my first son, but for a moment in time, it soared.

I had finally–FINALLY–done right by him.