December 26, 2010
An elf with rock star aspirations, more “naughty than nice” letters, and the probable kidnapping of the jolly old star of the show. Alas, I’m not alluding to the holiday episode of Jersey Shore, because the latter part would be a welcome improvement in my eyes. No, I’m simply referring to the lovely holiday play, Chasing Tinsel, that Justin and I were privileged to view this weekend at his school (and armed with our new behavior management techniques from the fabulous “Miss M” as well as a few snacks, we almost made it to intermission).
After a brief tussle upon initially entering the auditorium (Justin was convinced the brightly wrapped prop-presents were indeed for him), we quickly settled into one of the front row seats, and were immediately greeted by his teacher. I’ve been certain that Justin loves his new school, mostly from the way he bounds to the bus in the morning and practically launches himself into my arms from the vehicle at the end of the day, but if I needed reassurance, I got it. Justin heard her say his name, did a double-take when he figured out who she was, and treated us both to the view of his joyful grin overtaking his entire face.
My boy truly gets who loves him.
After a brief sojourn to the fifties-style girls’potty and a complete rejection of the salty and sweet for-purchase snacks in the back of the room (the snubbing of which made me break out in a cold sweat as I wondered if his “goody bag” indeed contained his favorite pretzels), we quickly returned to our seats. We retained our Christmas cheer after I gratefully located Justin’s “twists” and offered him a juice box, and he smiled in recognition as I showed him the timer with its wealth of red. We settled into our seats to be regaled with tales of greedy children and icon abductions, and I noticed that Justin, particularly during the singing scenes, was hanging raptly onto their every word. He even grinned at me periodically and checked to see if his teacher was still in attendance, and we soon made it past the thirty-minute-marker that usually symbolizes his impending egress. He was far more engaged than when I take him to 3-D movies, even paying attention to scenes not involving pretty, talented, teen-aged elves.
Heck, I may have to rethink the insanity of braving Broadway with him.
We didn’t quite make it to the halfway point, although Justin sat dutifully for TEN EXTRA MINUTES after he signaled his desire to leave and was confronted with our coveted time-piece. Since we were within spitting distance of his teacher and one of the directors of the school, I couldn’t have been more proud of his patience. He saw the timer, glanced at me and smiled, and slid back into his seat to take in the next scene. Since he was out of pretzels and juice by then his only sensory option was visual, and he seemed perfectly happy just to wait until I released him. There was not one complaint, not one cry, not even the tiniest of protests.
He made us look good.
All too quickly the clock wended its way to white, and I honored our contract, and gathered our stuff to leave. We were briefly waylaid by the executive director of the school who was kind enough to tell us we didn’t need to leave if our only reason for departure was a “noise issue”, and I happily responded that no, thank you, he was just done, and we were ready to go. I settled him into his harness and we headed for Wegman’s (of COURSE I was going to get some food out of this), and as my faithful GPS helped me navigate the labyrinth of circles that is the heart of New Jersey I had a few minutes to reflect on why Justin is so happy, and why I am in such a state of peace. There are multiple reasons, but I’ve become aware of one in particular that has come to have great meaning to me.
We are truly part of a community.
I’ve mentioned before that I’ve been blessed with family, good friends, amazing co-workers, a husband who does our food shopping (!) and of course my boys, but I can’t say I’ve truly felt part of any community before. I’m a white girl of middle-class origins, a veritable Western European mutt. I’ve wondered if entire cathedrals would crumble in despair as I darkened their doors due to my impatience with organized religion, and I was perhaps the worse sorority sister on record. The most distinct, unique thing about me is perhaps my Huguenot ancestry, which almost landed me a full scholarship at a hoity-toity women’s college (when it required an emphasis on economics I wisely declined, deciding I actually wanted to obtain a degree one day). I’ve felt loved in my life, included, but not really unique, not a part of any particular cohort.
Ours is a community composed of eager volunteers in our local autism organization, men and woman who strive so hard to provide the training of police officers and teachers, as well as those blessed opportunities for fun that all families with disabled children need.
It is comprised of the online bloggers I’ve come to know, both for their eloquent missives and our personal interchanges, sometimes poignant, often hilarious.
It encompasses that fleeting moment of eye contact between two parents at a pediatrician’s office, imparting instant understanding, compassion, and often humor of a shared and harrowing situation.
Our community includes my sons’ schools, where teaching my boys seems to be a “calling”, not just a job, for all the faculty involved.
It’s not a community I would have ever thought I’d be a card-carrying member of, and certainly not one I would have chosen for myself and my family years ago. Its membership comes with many burdens and obstacles, and often I’ve found its entirety diminished to a circle of four, as our family has simply tried to make it through a day.
But our horizons are broader now, our boundaries have extended to embrace both people I’ve actually met, and those whose presence might never physically encounter mine. It is a warm, accepting place, and I am so grateful to burrow there, to have found its grace.
And I hope for all of you still searching for yours, in whatever form your sanctuary takes, that you find its confines soon.
October 24, 2010
The weather was lovely this past Sunday, as it often is in early October, and in an effort to get two stir-crazy boys (and two equally stir-crazy parents) out of the house, Jeff and I decided to make the drive down to the Seaside Heights boardwalk, the infamous home of the Jersey Shore crew. We’ve found if we’re willing to walk to both piers we can appease both boys with the ride selection (they’re discriminating customers), and everyone is ultimately happy. It was while walking back from the farthest pier, wondering whether or not we could chance the next one and escape the rain, that I looked up and saw the sign, nestled between yet another Kohr’s custard stand and the fifth millionth “Best Pizza Place” ever. It was a giant placard, as very little in this town is subtle, and it declared its message in huge, red capital letters, a combination of words that were difficult to miss. It read:
“SNOOKI SANDWICH SOLD HERE!”
I took a few more steps, felt the bile rise in my throat and tried to get to my “happy place”, which was conveniently located at the Kohr’s next door. There’s not much custard can’t solve for me.
After purchasing my usual vanilla with chocolate sprinkles concoction (I am so predictable), I walked back over to my husband and my boys. Jeff looked at me, took a slight step backwards, and said “Honey, there’s something I saw on Comcast this morning that I forgot to tell you about. Snooki has a book coming out in January.”
I looked up at him, asked him if he was messing with me, and if so, he should really rethink this choice if he ever wanted to be intimate with me again. He returned my gaze, took a deep breath, and said “Nope, it’s true. It’s called A Shore Thing. She’s writing it with a collaborator.”
Of course she is.
All of us locals from central Jersey have been dodging the fallout from Jersey Shore, but I think this is the one outcome of this show, and reality shows in general, that has finally put me over the edge. I understand that life is not fair. I accept that “The Situation” is now worth five million, will through his burgeoning fame be able to launch his album/clothing line/gym simply by throwing up occasionally, sharing some pithy commentary, and showing off his six-pack (or so I’ve heard). When I was ill this past spring I will come clean and share that I willingly watched a few episodes of the Bachelorette, and I grudgingly admit that I admired her obvious charm and wit. I also admit I was secretly hoping the plot twist would be she was a lesbian with no intention of searching for heterosexual love, instead was simply hoping to use the show as a vehicle for her own perfume/clothing line/book deal. Ultimately I was disappointed, but at least she didn’t end up with that creepy guy with the glasses. I’m hoping for his sake he already has a good day job.
I can rise above and stomach all of this “faux fame” because I know this is how the world works, that you don’t actually have to possess a talent to become well-known and reap the often dubious rewards that notoriety brings. I have to draw the line somewhere however, and I have chosen to make my mark in the sand at a book deal. Hell, let’s face it, even if my manuscript gets published and I have a wardrobe malfunction on David Letterman, more people will ultimately read Snooki’s anyway (even if it’s on my good side).
The truth is, that despite the odd rules of our society, I’ve decided I can’t let Snooki show me up. My ambitions are quite paltry compared to hers, as I’m not really expecting our President to know my name, or frankly anyone outside of central Jersey. I’m not looking to make writing my new career, have my book be the autistic version of Eat, Pray, Love, or have it made into a movie, although I’ve already decided who would play us. Coach Taylor from FNL is a ringer for Jeff, and when I use my imagination, Reese Witherspoon for me . Apparently she’s anal in real life, and by the time the film hit theaters she might actually look old enough to play me ten years ago. Finding a child actor to play Justin would be a bit challenging however, so we’ll have to hope the Fannings push out another kid down the road.
So while the manuscript is edited and the blog is going strong I’ve realized I still need to ramp things up a bit, and since I’ve already ruled out reality TV despite the blessings of my liberal husband, I have one option left to me.
I’m going on tour.
Unlike my little brother I will not be darkening the doors of the Wachovia center. Instead, I’m taking my words to my peers, speaking to teachers and parents of special needs children, and we’ll see what happens next. The irony of my choosing to do this is that I’m fairly shy in large groups, was the student who always volunteered to do her oral report first just to get it over with, although during spelling bees I was completely confident.
Bring it, “ubiquitous”.
No, I have fairly pedestrian goals. I would eventually like to see my book grace the shelves of someone I’m not related to, as well as add to the coffers of Parents of Autistic Children by donating a portion of any profits made. Down the road, in my wildest fantasies, I’d also enjoy landing a part-time job in our education-ravaged state more interesting than that of hallway monitor. Wish me luck. Trust me, I’ll let you know how it goes.
I know, I dream big, but I figure if a girl from Brooklyn can get a carb named after her AND a book deal, a real Jersey girl might realize her dreams one day too.
August 24, 2010
This week, I have to say, the winner of my “gratitude attitude” appreciation award has been my son, Justin. Over the past several months he has successfully navigated his way through two completely new camps, a new school placement, swimming lessons in a foreign locale, and has been adored by all. In a landmark move, he’s even consistently allowed me to trade his sneakers for Tivas when heading to the beach. This true first has precluded me from the time-honored Jersey shore tradition of scraping every speck of sand off of not-so-tiny feet before replacing sneakers for the long trek to the car (I am almost as grateful for the latter as I am for the acclimation to the new camps and schools.) I am, as always, exceedingly proud of him.
Thank you Justin!
July 19, 2010
We’ve finally made it, our caravan of three vehicles transporting two autistic children and four pairs of adult hands, the requisite number required to make certain both my boys can participate in Parents of Autistic Children’s (POAC) annual surf event at the Jersey shore. I am thankful we have indeed arrived, as we had previously endured a brief skirmish with Justin regarding the appropriateness of his wearing Tivas to the beach, and eventually, to my relief, I won. I simply refuse to take any of my progeny to the ocean clad in socks and sneakers. I am a Jersey girl myself, and I have my standards after all.
After navigating our way cautiously across the bustling thoroughfare of highway 35 we arrive safely with both children in tow, register, and settle in to dispense with the fifteen minutes we have left before my oldest son’s scheduled surf lesson. Justin unerringly finds the strategically placed food offerings that so entice him, and hunkers down at a picnic table to sample a small piece of submarine sandwich. I actually join him as I remember I have unwittingly forsworn lunch today, a minor tragedy I pledge never to repeat. Life is difficult enough without having to endure hunger pangs as well.
After compulsively checking my watch a dozen times to make certain we won’t miss our appointed hour, we clean up our residue and herd my sons down to the waiting shoreline, where I see the Brick lifeguards fully engaged in the job of ushering autistic children out to sea. There are makeshift lines in evidence for parents to stake their claim for the next surfing team, and I bark out orders to my family members to keep the kids alive while I wait to attract someone’s attention. Zachary has to be kept from wandering off, Justin needs peace and quiet to finish his sandwich, and of course, there are photo opportunities that cannot be missed. We are a well-oiled machine, primarily because I am bossy and have instructed everyone as to their job requirements prior to leaving the house. Each child has two adults assigned to him, as I am still wary after the recent near debacle of my not-so-great adventure with Justin. I am determined to leave today with both children alive, and at least one joyous photo of each recorded for posterity.
Clearly, I have ridiculously high standards for happiness.
Eventually I make eye contact with a strapping young man I would have deemed gorgeous twenty years ago (and still do), and ask him if he and his surfing lackeys can take my son out after they finish with their present charge. He smiles and responds we are indeed next in line, and I look back to gauge exactly how much sandwich remains on Justin’s styrofoam plate. It looks like enough to last the duration of the other child’s surf lesson, and I breathe a slight sigh of relief at that knowledge. Justin seems tired today, has in fact been conscious since long before dawn and has just completed his first day at his new school. I am confident he will not be in the mood to wait for anything. I am adamant that he at least try this sport, as he was fairly reluctant initially to mount a horse eight months ago, and obviously that has evolved into a beloved and preferred activity. I never know what will eventually click with him, and as his interests are limited, I want him exposed to as many things as possible. Besides, we reside ten minutes from the beach, and I practically grew up on one. It is impossible for me to believe he won’t eventually at least tolerate the roller coaster of sand and surf.
Eventually the little boy ahead of us relinquishes his viselike grip on the surfboard that has afforded him an unparalled ten minutes of fun, and he finally plants his feet on solid ground and disrobes from his life vest. The head lifeguard calls out to me that it’s Justin’s turn, and I wheel around to ascertain if enough of his Italian sub has been devoured for him to transition to a new activity. I eyeball the messy remains of the sandwich, and decide he has indeed ingested enough to pull him away from his secure spot and attempt the inherent treachery of the ocean. I am certain he will not be thrilled with my request.
He reluctantly but dutifully hands his plate to me as I knew he would, my son who always strives to be my good boy. I take his hand and walk him to the waiting cadre of surfers, and as we approach the individual holding the life vest I can see in his eyes he remembers this event from last year, and is not impressed. I’m wondering if we will be able to accomplish our goal after all.
But today has been a good day for Justin, and although he is not enthralled with the concept of what is about to transpire, he complies to my whim of ensconcing him in his jacket, and follows me, albeit reluctantly, down to the water’s edge. I instruct his new friends to simply take him in and do their best to encourage him to at least lie on the board, because often Justin responds to a situation much better after the preliminaries have been dispensed with completely. Two swarthy young men carry him in while the remaining guards transport the board, and they quickly attempt to situate him upon it through the roiling surf. They try several times, but my firstborn will have nothing to do with this alien, elongated piece of fiberglass, and instead clutches for dear life the closest human he can find. I am amused, that of course, it is the pretty girl. My son has his standards as well.
I shout to them to return him to me, and they quickly comply. Justin looks relieved, pulls my hands to help him shed his equipment, and unerringly picks his way among the crowds to his waiting snack. I thank the group profusely, and they murmur somewhat dejected apologies, which I quickly refuse. I tell them we’ll try again next year, and with the resilience of youth, they accept this promise, and move off to the next child who looks far more eager to attempt to master the waves. I turn back again, make certain Justin is still consuming his prize, then allow my gaze to wander a few feet forward to a small crowd encircling a stationary surfboard with a small child upon it, one who is responding to a cry to “hang ten” with a semi-crouch and airplane arms, and eyes making certain everyone concurs that he is the main attraction.
That child happens to be mine.
It appears that my three-year-old, the one I didn’t even bother to sign up for this event due to his fears that the ocean is “too loud”, has appropriated his own board and team to accompany it. I stride rapidly over to the scene to make certain someone in my family is capturing this on film, and arrive just in time to hear one of his newfound friends ask him if he’d like to go surfing in the ocean. He replies with a resounding “yes!”.
This is the child, who although light years milder in his autism affliction than his older brother, is still plagued far more seriously with sensory issues. He still regards the vacuum as a threatening ogre, reviles sand between his toes with the same vehemency as his father, and will permit only two different textures of food items to grace his palate. His issues have slowly begun to resolve themselves with time and maturity, but nowhere in my repertoire of “he must try this anyway” did I include a rendezvous with the sea. To date, he has refused to even immerse his toes in the receding surf, and recoils from its vastness even while cocooned in the safety of his mother’s embrace. His desire to attempt this on open water frankly stuns me.
And I could not be more thrilled.
Zachary is asked to stretch himself out on the board and grip the sides tightly, a command with which he willingly responds. He is still so light that his surfing cohort can whisk him into the sea by simply raising him to shoulder level and simultaneously battling the waves, all with my smallest son staring out to the horizon, impatient for the adventure to commence. I whip off my beach dress and rush out after them, not because I fear they’ll lose him to this monolith of salty brine, but from the desire to be in close proximity should he seriously regret this decision. I immerse myself for no reason. He doesn’t even notice me. He is simply enthralled with the ebb and flow of tide.
I am within earshot of hearing him politely decline to sit or stand on the board, and his refusal to comply is irrelevant to the joy and intense concentration evident in his countenance. He has conquered his fear of the ocean, and I have no doubt in the next year or the one following he will eventually be obeying the tide’s majesty, and gliding safely into surf’s edge. I watch him, toes scrabbling for purchase on the slick surface of the board, tiny fingers wrapped securely around its edges, face redolent in its awe. He is magnificent.
He does not realize what a gift he has given me today, how these instances sustain me through the terrible times, or even simply the sad moments, those instances most often accompanied by self-doubt that I am doing anything, everything, I can for these boys. I wish I could explain to him what this means to me, but he is three after all, and would simply reply “mommy is happy”.
And he would be correct. She is. And as I turn toward shore to watch my family rejoice at his bravery, I feel myself buoyed by a wave both of water and sheer contentedness, and for that moment, I am healed.