April2
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.
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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.
