July 29, 2011
I noisily slurp my deceptively delicious frozen strawberry lemonade, a new concoction from McDonald’s (who knew the golden arches could corner the market on this summer’s most fabulous non-alcoholic beverage?), and take in the scene before me. It’s a familiar seasonal tableau, as my family of four often comes here to “dine” when on a Great Adventure outing, and I think the familiarity of the routine keeps everyone peaceful and calm. Zach is ignoring the ham we brought with us in deference to his GF/CF diet, and is playing seriously with Justin’s happy meal toy. My husband is scarfing down what actually looks like a fairly edible chicken sandwich, and Justin is contentedly watching Cars on his CD player while eating the fries I’m surreptitiously stealing from him. All is right, and “normal” for us, in the kingdom.
And then, my oldest boy points.
There was a time when my heart would have leapt into my throat with joy, along with the alluring thread of hope that this common way to communicate needs was leading up to a “breakthrough” for my son, a transition from his world, to mine. When he was diagnosed with autism at seventeen months, and had barely made the switch from infancy to the realm of toddlerhood, the necessity of teaching him how to point was drummed into me over and over by the vast majority of the professionals comprising Justin’s therapy team. Again and again I would hold his tiny hand, elongate his sweet pointer finger, carefully fold the remaining four into a gentle fist, and aim. He was supposed to be demonstrating this integral skill not only to convey his needs, but in order to share something of interest to his parents, his grandma, or just his babysitter.
The latter concept was called “joint attention”, a pivotal requirement for typical development in early childhood. I shaped those five digits frequently during those first years in the hope the desire to show us anything would “catch on”, but honestly, it rarely did. I do have one such encounter relegated forever to the digital world. It is a slightly shaky few minutes of film in which I recorded Justin sitting on Jeff’s lap pointing to the vibrantly portrayed animals in Eric Carle’s The Very Hungry Caterpillar, my son laughing gleefully as my husband recited each mammal’s name no matter how many times Justin referred to said animal in a row. Soon, even the desire to engage in that game dissipated too, and my son began to rectify his needs through PECS, his Springboard, and ultimately, his iPad. He found a way to engage us in his joy as well by simply using his eyes, not his finger, to showcase his discoveries. All in all, these methods have worked for him, and for us.
But today, he is pointing. It is a gesture preceded by a downward glance of disgust at his chicken nuggets, followed by a look of undeniable longing toward my husband’s poultry selection, and capped off with a “finger chaser” in case there are any doubts as to his desires. His emotions are so unusually readable on his face that Jeff and I have to laugh, as there is no confusion as to what he desires, and I know my spouse will be heading back to that frenzied food counter momentarily to repurchase his own lunch. In good father form he breaks off a bite-size piece, and my son is eager in his acquisition, almost inhaling the slice before Jeff can change his mind. He swallows, and we watch the mere hint of a smile cross his face as he imperiously extends that pointer finger again.
And I have to laugh once more, because this interchange is just so damn “normal”.
There have been a number of these moments in the last few weeks as I’ve entertained the two kids on their summer school/camp hiatus, and they are wonderful to see. One morning, well before my other two boys surfaced from slumber, me and my eldest constructed an Elmo fire station from Legos, mommy pointing at the photo on the box, and son locating the plastic piece and constructing the building from scratch. Two evenings later, Justin grabbed my youngest as he enacted his nightly bedtime ritual of hugging his big brother goodnight, pulled both boy and book into his bed, and regarded me with a look that left no doubt they’d be receiving their bedtime story together.
Fortunately, Velveteen Rabbit was a crowd-pleaser.
To tell you the truth, I’m pretty exhausted on this “time-out” from routine, and I’m only two-thirds of the way through. But I’m glad I’m witness to these fleeting moments, happy to participate in this minute foray into typical. Justin’s truly beginning to interact more with the world, his teachers, his sibling, even strangers who grace his path. It’s not earth-shattering progress, but it makes life so much easier for us all.
And that’s a concept I’ll take with me until that glorious first day of summer school.
April 4, 2011
“Zachy, we don’t stand up in booths at restaurants” I gently admonish my youngest child, reminding myself that this is literally the first time he’s been in such an establishment in two years, since he’s an adherent to the gluten-free casein-free diet. While there are now a number of pizza places in our area that serve their fare without wheat, rice, barley, and oats (I imagine this is mostly due to Celiac’s disease and a recent diet craze by celebrities, not autism), I have yet to find a locale which can meet both of my son’s restrictions. Tonight however we’re fortunate, because the owner of this particular Perkins’s has no issue with my toting Zach’s dinner along with me from home, so we’re set. Both boys, to my delight, are eating well. And after I’ve cleaned up the multiple Picasso-like smears of ketchup enhancing both the design of the table and the glass-etched partition separating us from the other patrons in the restaurant, we’ll be on our way to celebrate St. Patty’s Day at Someone Special Needs You tonight.
A woman’s work is never done.
On our way over to meet my aunt for dinner prior to the big event my eldest son kvetched mightily, his disdain for his younger brother’s presence readily apparent, but about halfway to Perkin’s he finally settled down. I even caught him regarding Zach a few times with a look on his face that said “Can you BELIEVE she’s taking us here?”, and after I explained a hundred thousand times to Zach what our itinerary was for the evening, he got on board with the plans as well. After we pay for our meal and over-tip the nicest waitress EVER (short of shoving a mop and bucket in my “goody bag”, there’s no way I can ever restore this table to its proper cleanliness, and this woman NEVER complains), the boys run eagerly to the car, almost pulling our arms from our sockets in their enthusiasm. We quickly arrive at the church mere minutes later, and I relegate Zach to my aunt as I try to prevent Justin from bowling over some of the younger participants in the program.
Even though he’ll want to leave in twenty minutes, for Justin this moment is horseback riding AND Great Adventure all rolled into one.
Neither of Justin’s buddies are in attendance tonight, but we are fortunate to acquire a substitute, a poised, chatty freshman who I am certain will one day dominate the world (in a good way). Justin takes to her immediately, and she says due to her schedule she can’t commit to coming here every month, but she’ll try harder. I’m just grateful she’s here tonight, as the allure of SSNY for Justin is not the crafts, but the teen-aged girls. While autism may traditionally inhibit social interaction in its hosts, this is clearly one subset of the population for which Justin will consistently overcome his limitations.
His father is so proud.
My youngest son has also lucked into a buddy for the evening, and there is a point where for five consecutive minutes I get to chat with my aunt as my boys decorate their leprechauns, and construct their own personal pots of gold in which to house them. I’m constantly plying Justin with food so he will make it to the grand finale of the night, a hunt in the graveyard for gold nuggets of treasure to fill the green buckets they’re creating to hold their stash. Once again I’m impressed with how much effort Vince Scanelli and his volunteers have taken to throw this event together on a weeknight no less, and I’m still grateful for the flyer about SSNY that Justin’s pre-school teacher sent our way in his backpack four years ago. Generally at this point on a weeknight I’m just trying to remind myself to make Justin’s lunch for school, and this gentleman has been providing an outlet for children with all disabilities to spend time with neurotypical peers on a monthly basis. From the look of delight and concentration on Zach’s face, I think the McCaffertys have one more activity our boys can do together as a family.
Justin finishes his craft quickly, but manages to fill the remaining time until the treasure hunt with multiple trips to the bathroom, so for once I’m not spending the majority of my evening convincing him to stick around. Halfway into the hour Vince summons us all to the front of the church’s great room, distributes leprechaun hats to those who desire to don them (where does this man find the time), and regales us with the plans for the rest of the evening. It seems those naughty little Irish icons have distributed their wealth throughout the adjoining cemetery out back, and if we move quickly we can acquire them for ourselves before the green gremlins return to claim their cache. I look around me at the participants, ranging widely both in age and in the manifestation of their disabilities, and listen to their collective exhale of joy and anticipation. I watch Zach look up at my aunt in wonder as he rejects his hat, then I turn toward my eldest to see how he has reacted to the news of impending carb heaven.
He stands squarely in the center of the fray, his eyes mere inches from the mecca of DVD movie heaven, smiling and entranced by the old man from Up. My son is completely unaware of his surroundings, could just as easily be in Disney, or at the DMV. For him, at this moment, none of the rest of us even exists.
Even a few years ago, this realization might have ruined the night for me. I would have been so saddened my son was oblivious to the excitement swirling around him I wouldn’t have been able to enjoy the moments of engagement he did have this evening, the connection forged with a girl I hope will be a new friend. I’m not certain I would have been able to move forward in my mind to the event to come, which will involve my two boys breathlessly foraging for their finds, relentless in their acquisition of gold. I don’t know that I could have pulled myself back from the abyss of what appears to me at times such a solitary state for my boy, one in which I’ve often envisioned he must feel so alone.
Except, perhaps sometimes, like right now, he actually doesn’t.
My goals for my boys have never altered over the years, have not been diminished by autism, have simply been reframed. I want what I’ve always wanted for them- health, hope for a safe and industrious future, and happiness. The longer I remain on the “autism tour”, the more I feel these elaborate goals are potentially feasible, will perhaps be attainable while I am still young and facile enough in mind to recognize we’ve achieved them.
And that day, in all its glory, will truly be the pot of gold at the end of the rainbow.
March 6, 2011
It’s the one millionth time we’ve driven home from the boardwalk arcade this winter, and the familiar cadence of Justin’s vowel sounds is once again caressing me like a warm, well-worn blanket. My boy is rocking out in the back seat to Yaz (he selected the CD, he has fabulous taste), and as we reach the crescendo to Midnight I glance back in the mirror so I can view his happy countenance. We’ve frequented this place so many times since the cold weather enveloped central Jersey that we’ve begun cycling through all the venues here, but one thing remains static- our culminating trip to the fudge shop.
Like I said, my boy has fabulous taste.
I have to admit I was bored today, encumbered by the habitual malaise that envelops me on the cusp of every new season. Easter is late this year, which means the rides at our local boardwalk won’t open until mid-April (thank God for Great Adventure, my new best friend), and I have completely run out of things to do with my moderately autistic child, on a Sunday afternoon, in February. Bowling is out, because all the lanes are packed around here on weekends after ten, and we’ve already sat through forty-one minutes of the latest Pixar creation, which means we’re now on our way to the one option left to us, which is home.
Crap. It’s only 2:15. Only five more hours to go.
It’s not that I don’t enjoy spending time with my eldest son, because I do. Even though he doesn’t talk (allowing Mommy some actual “quiet time” in the car, which on some days is a real bonus), we always manage to communicate our feelings to one another, are successfully reciprocal in our attempts to convey our needs. One of my (many) profound fears when Justin was initially diagnosed was that I’d never comprehend his desires, would remain unable to fulfill his requests. To date, for which I am eternally grateful, understanding his thought processes has not been an issue.
We just get each other.
But as much as I enjoy this time with him, value his hugs of delight when I tell him to go get his sneakers because we’re leaving the house, appreciate his exuberant kiss on my forehead as we make one last trip to the potty, it’s simply not enough. I want to have somewhere wonderful to take him as we cruise the abandoned streets of this now-slumbering beach town, would like to have an alternative to what awaits us at our house. On this frigid afternoon, with the sun slanting speckled stripes through the dirty windshield of my car, I’d prefer more variety at my fingertips than the computer games he’s pretty much memorized, and the DVDs we’ve all viewed a thousand times together. Instead, I’d like to offer him a really cool locale.
I’d like to transport him to my version of Disney.
“KimIsney”, as I’d prefer to trademark it, is a fantasy I’ve concocted during our many hours in the car together, particularly on weekends as I schlep him back and forth to his riding lessons. In my daydreams as we drive I am the beneficiary of great largesse from our state’s lottery system (to date I’ve won $500, so I’m not holding my breath), and subsequently find myself the happy recipient of a staggering sum of money. This grand prize of course enables me to put one child through college and med school (certainly a four-year-old can already discern his career path), provides the other with a safe place to reside, and affords me access to that amazing farm I’ve created in my mind. Jeff and I are able to pay off our oft-refinanced mortgage before we’re eighty, and I am able to better satisfy my clothing/restaurant/travel fetishes. We then treat our families and friends to “frivolous stuff”, and happily donate to our favorite charities and organizations (don’t worry POAC, you made the list).
And of course, there’s just gobs of money left over for fun.
In my mind’s eye, “KimIsney” encompasses as much land as both Kennedy compounds combined, and is about as well-protected. Within its interior is a snack-bar that not only distributes healthy snacks, which our picky eaters will actually consume, but serves gluten-free casein-free products for those children on the “autism diet” as well (notice I address the food issue first). There are game rooms where unlimited and repetitive play is not only allowed but considered the norm, some with the accoutrement of loud sounds and flashing lights, and several more restrained in deference to children with sensory requirements. An Olympic-sized pool provides lessons to those on the spectrum as yet unable to swim, with a one hundred per cent success rate upon completion.
Hey, it’s my fantasy. Indulge me.
Of course there are in residence two movie theaters, one “typical”, and one reminiscent of AMC’s autism showing (light on the previews, heavy on accepting all legal behaviors). Indoor rides are plentiful, both those with a gentle sway, and ones that accommodate my son’s need to torture his mother’s severely diminished equilibrium. Just for fun we’ll throw in a stable, where Justin can both practice the equestrian grooming arts, and trot his little heart out.
And the best part is, it’s so well-staffed, nobody ever has to wait for anything.
In my opinion, “KimIsney” would not be complete unless there was an accompanying parent component, and since it’s so fabulously staffed with Board Certified Behavior Analysts just gunning to donate some of their abundant free time, parents should have the opportunity to relax. An inviting wing of the compound will include a spa, light shopping (come on, I’m trying to throw in a bit of realism here), and of course a “tini” bar for those who come with a designated driver. Moms and Dads of children on the spectrum will have the opportunity to actually RELAX on a weekend, knowing their kids are safe within the sanctuary of the building, and remain in competent, well-trained hands.
There’s no way I’m donating this structure to the world unless my people can let loose a bit.
I’m just beginning to envision what stores I’ll have in residence when my dreams are abruptly interrupted by a smudge on our selected CD, a blip that forces me to change our music selection so the words “only you” are not forever emblazoned in my psyche. For once Justin is not annoyed at the derailment of his choice, and I quickly “throw the book” at him, and wait patiently as he thumbs through plastic receptacles for our future tunes. I half consider a brief stop at WaWa for the latest lottery pick, but since my chances of a meltdown from Justin when I prevent him from consuming every carb in sight are much greater than landing the motherload, I resist the temptation. For the occupants of this car, on this mid-afternoon, it appears there is no place like home.
And who knows, if I keep playing those numbers from Lost, maybe one day we’ll all win too.
December 7, 2010
Rip. Yell. Repair.
That’s pretty much been the state of affairs in our house with Justin since the spring, when a succession of illnesses felled him and the OCD component of his autism came back in raging force. This scenario was particularly difficult for us to adjust to given that we’d spent a few months in what we liked to call “Camelot”, a period in which both boys were usually sleeping through the night (my favorite part), Justin had almost completely quelled his aggressions, and my youngest had made so much progress one of my best friends mock-accused me of faking his autism to make my book longer.
Yes, he’s really autistic. Yes, I have the report to prove it. And yes, we’re still friends.
We knew immediately that the compulsive aspects of Justin’s disorder were back in full form because he unfortunately began exhibiting those frustrating body tics again, the ones in which he shakes his head back and forth so hard I can only imagine whiplash would be a gentler outcome. This time they only lasted for a few weeks, a boon for which both me and his father were grateful. We’ve tried several different medications over the years and dabbled in the world of biomedical alternatives, but after our son has suffered through high fevers, these tics always seem to be the remaining unwelcome guests in our house.
Autism is just such good fun.
To be perfectly honest, I was so grateful to see the swaying leave so relatively quickly that I failed to really notice how a few other unpalatable activities were left in their place, such as the need to tear to shreds anything imperfect within a five-mile radius (hence why my pediatrician removed her remaining wallpaper and painted her waiting room pastel pink and blue), as well as my son’s desire to leave any location outside of his home in under thirty minutes. We subsequently sailed into summer which is always our best season here, and got caught up in a last-minute switcheroo of schools for my oldest, in which the inherent drama of the change took us well into September. As I’ve mentioned before, this has been a REALLY good year for all of us, and so I chose for a time to focus on the positive and ignore for a few months that my son has become “Captain Destructo”, and an episode of “Cake Boss” (yum!) lasts longer than any of our outings.
Denial is a wide, wide, river.
Throughout early fall the realization that these issues have not improved has finally caught up with me, and I acknowledged to myself it was time to exit Shangri-La (okay, OUR version of idyllic) and get back on the ABA horse and ride. I also admitted to myself that part of my reluctance in trying to “fix it” revolved around the fact that I’ve been at this for seven years, at times have handled the majority of his behaviors on my own, and I’m just damn tired.
Thankfully, “Miss M” has come to our rescue.
One of the benefits of my son attending his new school is that they have several Board Certified Behavior Analysts in residence, all of whom actually make house calls. On the day they accepted him I put our names on the waiting list, hopeful that we could at least minimize these two issues that were still plaguing us almost daily. Within two months we rose to the top of the list, and “Miss M” made her appearance at our home for her “get-to-know” you session. She was able to leave me with advice on Justin’s first issue immediately, namely the destruction of any paper or plastic product that offended his eye, and I quickly implemented her counsel.
I realized that intellectually I knew what to do with him to reduce this behavior, but I’d been hung up on the fact that due to laundry/”cooking”/potty training/keeping the second child alive I hadn’t always been able to confront him immediately after he altered something, and that had kept me from making him fix things. Once “Miss M” assured me that the important factor was to force him to repair whatever he destroyed, make said repairs highly annoying (I’m good at that part), and stick to my guns even if the renovations took place six hours later, I knew what to do. I’m happy to say we’ve seen a lessening of destruction, a fact which probably saddens Zachary because he LOVED to tattle on him.
Autism or not, they’re still brothers.
His second and most daunting issue, his desire to leave the premises in the amount of time it takes to watch a sitcom, will be more difficult to handle, but “Miss M” is confident. I’ve shared with her that part of the problem is Justin’s outgrown many of the activities that made him so happy over the years, because although he’s autistic, cognitively and developmentally he’s often peer-appropriate. Frankly, the museums for kids under six and most local playgrounds just aren’t doing it for him anymore. He would kindly prefer to go to Great Adventure every day, and if I’d let him, frequent the section of terrifying roller coasters I refer to as the place where mommy will undoubtedly stroke out. When it comes to adventure, this kid shows no fear.
So, in an effort to discover some new activities that Justin can do when he’s both seven and seventy that won’t kill his mother, we’re decided to give bowling a shot, and we’ll be implementing a timer to show him he’s not allowed to leave after just two frames. I’m eager to see how this event will go, given that we’ve attempted this type of field trip once before when he was five. That day I spent the better part of his classmate’s birthday party chasing him around from pinball machine to pinball machine, all in a desperate attempt to keep him there long enough to sing happy birthday to his friend and eat some cake.
Hell, I had it on good authority it was chocolate with REAL buttercream frosting. Hyperactivity be damned, this girl was going to have her cake AND it eat too.
We’re trying the bowling lanes mid-week, and I just have to say that I’m so appreciative that someone else will be there with me to do the literal heavy lifting, as I’m certain Justin will find this activity as entertaining as the teeth cleaning where mommy forgot his favorite videos (yes, that has actually happened). I’ll let you all know how it goes, wish us well.
And I promise, no matter what happens, no jokes about striking out.
August 16, 2010
“We’re going to the jungle, Daddy?” asks my youngest son, who stopped dead in his tracks when my husband uttered the words “jungle” and “safari” in his presence. “Yes sweetie, we’re going to Great Adventure, and there’s a place there where wild animals live. We can see them from our car.”
Lions and tigers and bears, oh my.
It’s early on this July Saturday morning, or at least early for us, and for once our calendar is devoid of plans, no team meeting to discuss Justin’s progress, no therapy (for any of us), no autism movie, no hair appointment for mommy. It’s just our family and a beautiful blank slate until Justin’s horseback riding lesson late in the afternoon, and since the amusement park is mere minutes from the barn it makes perfect sense for us to attempt both activities. We’ve also decided to add on the safari as an extra degree of difficulty, an experience I am certain Zachary will adore, and fairly certain Justin will loathe. Seeing as how most residents of the jungle life don’t light up or spin, I am confident my oldest child will be counting the minutes until we zip through jungleland and get to the good stuff, the rides. I’m basing this assumption partially on his reaction to several zoos we’ve taken him to in the past, where he wore a look on his face that said “I’m doing this for you, you people had better appreciate it”. Not even monkeys cavorting with their babies or elephants defecating right in front of us could do it for him. Justin is a tough sell.
After the gooping, the bathroom breaks, and of course what I’ve dubbed “the odious gathering of the crap”, the four of us manage to get on the road and make it to our destination in record time. We weave our way through the entrance to the park, bypassing the water rides region as we usually do, and quickly make the sharp left that signifies we are now entering the wild plains. I look in the rearview mirror and see my oldest son on high alert, sitting up in his seat, looking out the window a bit bewildered. Since we’ve arrived at the earliest time possible we only have a brief wait to gain entrance, and after declining the extravagant offer of an audio tour we glide through the large silver gates into “Africa”.
The caterwauling begins. I am curious to see who in this car will make it out alive.
Within seconds it is apparent to us (and perhaps anyone within a five-mile radius) that Justin is quite distressed by our detour. As we slowly wend our way through wildebeests, emus, and peacocks, the latter of whom frankly seem too cheeky for their own good, I am struck by the dichotomy of experiences being enacted in the backseat of my car. Zachary is enthralled, pointing out animals with gusto, repeating “what’s THAT?” with great enthusiasm as his father frantically searches through the brochure to identify exactly which animal he’s regarding. On the other hand we have Justin, whose percussions of kicks on the back of my seat will be the deciding factor in whether or not I seek chiropractic aide, and whose staccato beat is being accompanied by a steady stream of angry vowel sounds I am certain cannot be matched by even the fiercest member of this animal haven. Jeff turns to look at me as I ask “how long does this take again?”, and we both placate ourselves with the promise that perhaps the “serious” animals will do it for Justin, those elephants, tigers and lions that at least seem to hold his attention in videos. We acknowledge to each other if the big guns don’t do it, we’ll be forced to listen to his tyrannical tympani for a good forty-five minutes longer. I am deeply regretting the gate-keepers didn’t offer me a margarita instead of the audio tour. Hell, you can only drive ten miles per hour here anyway.
Zachary is kind enough to inform us that Justin is crying, and as I gingerly regard my son once again in my rearview mirror I note indeed that he has turned on the waterworks. His face is beet red, he’s sweating, and with each turn of the car that doesn’t end up in the mecca of an exit he ramps up the vocals a bit, until I’m certain that some mammal in the area is going to hear it as a mating call. I look at my husband once again, expecting both of us to grimace at our faux pas, and me to begin my usual mea culpa at not being able to divine in advance exactly how tortuous an experience this would be for all of us, and subsequently chase this realization with a good self-chiding for my son’s suffering. Jeff and I make eye contact again. Instead of expressing remorse, we both burst out laughing.
I know. The headline reads “INSENSITIVE PARENTS MOCK AUTISTIC SON”. Really, I should be ashamed of myself.
Except, this time, I’m not.
I’m not upset with my choice, or castigating myself for laughing, or even in a hurry to finish this damn safari and get on with our day. For once, I’m not internally traumatized by Justin’s unhappiness, searching frantically in my mind for a way to appease him. In fact, I have no intention of speeding up this trip, or offering him a toy, or bribing him with food. He’s going to have to sit there for thirty-seven consecutive minutes more while his fairly oblivious brother enjoys this experience, and I’m not going to feel badly about it for one reason.
This is not autism. It’s just Justin not getting his way, and being bratty about it. Today, he’s just being a little boy, and he’s going to have to suck it up.
How do I know this you might ask? Well, first off I’m a Pisces, and that intuitive instinct is a well-developed sixth sense in me. Yes, I’m a bit prescient, am capable of discerning the genders of unborn children (except my own) with unwavering conviction, was able to predict with stunning accuracy that Jon and Kate Plus Eight might not end well, and that going “lighter” on the content of the SATC sequel might not be such a good idea after all. Sure, you could write off all of these predictions as mere coincidences, but I’ll tell you this: I do know my son. I know when he’s experiencing sensory overload, I know when he’s scared, I know when his OCD is in overdrive and he’s beside himself, and I know when he’s just plain mad. Today, he’s just mad. He understands perfectly that he’ll get to freak out his mama on Skull Mountain, that he’ll be served his exorbitantly priced pretzel, that the unmitigated torture of watching the residents of Noah’s ark will indeed end. He can’t say it in words, so he’s expressing his disdain the only way he knows how, with sharp kicks to my kidneys and a torrent of tears.
Jeff, being a Capricorn and therefore not psychic, asks me if I’m sure Justin understands he’ll achieve his preferred destination at the end of the road, and I reply in the affirmative. I tell him we’ll know for certain when we exit the safari and drive in the direction of the park entrance, that if Justin is surprised he will jump up and down in his harness with elation, display a grin that will envelop his entire face, and vocalize his relief that indeed his stupid parents have figured out where he wanted to go all along. I assure him this is just one more thing we have to endure, that at least Zach is excited and happy, that it was worth it to come here for him.
After what seems an absolute ETERNITY we leave behind gazelles, hippos, and hyperactive monkeys and begin our exit from the bowels of the jungle. At a 15 MPH minimum I am capable of simultaneously steering and regarding Justin through my rearview mirror, and as we make our way to what could potentially be construed as the exit to 195 or the entrance to roller coaster heaven, I listen for sounds, syllables that will indicate Justin’s current mood.
There is complete and utter silence.
I shift slightly to look back over my shoulder for a better angle, and I see my son, tears drying on his face, still in body, serene in countenance, with a smile of divine satisfaction playing on his lips. In his mind he has won, his protests have allowed him the escape from “Satan Safari”, and delivered him to the much-preferred grounds of Wiggles Worlds and carbohydrates. I know, to the depths of my soul, that he understood we’d end up here, that he knew this detour was not permanent. I also know that this delayed gratification, while conflicting with the treatises of the Geneva Convention for his parents, was good for him. This kid has a great life, filled with trips to the beach, boardwalks, his own pool, visits from relatives, and equestrian lessons for God’s sake. It’s okay if he’s unhappy sometimes. It’s okay if he waits. It’s okay if I require a Valium prescription in the future if we’re going to do this more often.
And as we shuffle our way through the crowded parking lot looking for a spot near a sign with a Looney Tunes character I’ll actually remember, I realize, once again, in our own fashion, we’re having a “typical” day, an outing that most families with “normal” children experience, and that we survived it. We’re okay, and Justin will be okay too.
Now I just have to pray they haven’t run out of pretzels.
August 6, 2010
The McCafferty clan spent the entire day in public this weekend, no crying, no tantrums (except for when Daddy was told he couldn’t bring his Swiss army knife past security), and no agita. Just five consecutive hours of blissful, calm togetherness.
The Christmas miracle came early this year.
Truth be told, we began having successful family outings about six months ago, when a combination of therapeutic interventions, maturity, and the correct medication culminated in my oldest son’s ability to consistently behave in public. We’ve been going places for years he and I, but our field trips have been limited in scope and time, and generally have excluded his father and brother due to Justin’s penchant for leaving any destination within half an hour. We’ve been working on extending our stays, but now that Zachary’s older it didn’t seem fair to risk cutting his trips short, and depleting two gas tanks seemed an extreme alternative, so we’ve kept our boys’ trips separate for the most part. This Sunday however we got brave, and armed with season passes for Great Adventure that “by God as a family we are going to use”, we decided to give it a go.
For once the stars aligned, and literally everything went smoothly. Everything.
Of course, by this point in the autism wars I am conditioned to expect the worst in just about any situation, so I was mentally prepared for meltdown Armageddon. My heart rate elevated within seconds of entering the gates after I was told the office for activating our season passes was on the opposite end of the park, a route that would take us past almost every ride Justin deems appropriate. Jeff and I briefly debated our options, which included either waiting until later in the day and risking the long lines we’d been warned about, or instead popping a wheelie with Justin’s stroller and whisking him past his coveted rides so we could get the photo portion of our day concluded swiftly. We opted for the latter, and I bent down and whispered in Justin’s ear that he would indeed get to partake in his usual fun eventually, but we had to accomplish this errand first. He regarded me with what I interpreted as minor disdain, but settled back in his souped-up carriage, and calmly let us wheel him past his faves with nary a complaint. We didn’t even have to bribe him.
The four of us waited mere minutes to have our likenesses captured on tiny plastic cards, and Justin dutifully complied with disembarking from his seat and returning post photo shoot, even gracing the camera with the slightest of smiles. Our passes were quickly returned to us, with half of us looking annoyed, and the youngest, palest member of the McCafferty household barely registering his image on his entrance ticket. We swiftly gathered our things, made a brief potty stop, then worked our way back through the park, stopping at every ride that caught our fancy.
The four of us, together, went on every attraction that caters to the four feet and under crowd.
We were an ensemble crew on the teacups. We raced each other on the carousel. We were even able to get Justin to participate in every ride in the Wiggles World pavilion, an area of the park which he has made perfectly clear in the past year he has seriously outgrown. For whatever reasons, ones I’m certain I will never discern, this weekend the Wiggles were once again cool. Through Justin’s acceptance his entire family had the opportunity to plunge to the ocean floor on the yellow submarine, ascend to the heavens in the Wiggles balloons, and condone mommy’s lead foot on the Big Red Cars speedway. The lines were short (and so were the rides), but we went on every one the boys pointed to, some of them twice.
Before I knew it, we’d been there for five consecutive hours, and I’d relaxed for at least four of them. We’d enjoyed ourselves. We’d had an entire day of fun.
We were just like every other family.
Well, okay, not REALLY, but for a few hours, minus the fact my oldest son doesn’t speak, we were. I realized it was the first time we’d been together as a cohesive whole in the three years since my youngest was born where there wasn’t an incident, a struggle, or even just the marital sniping all couples indulge in on family outings. I’d even remembered the camera, so if I didn’t believe it later, I could prove to myself this day had occurred after all.
We eventually made the long trek back from roller coaster mecca to the waiting vehicle I only located by activating our car alarm, and before I employed that lead foot once again I decided to scroll through the wonders of modern technology and reenact our day. I was rewarded with a shot of Justin, eyes wide as he whirled around on the teacups, with Zach grasping his brother’s hand for dear life. There was an image of the boys, side by side, happily scarfing down the contraband carbs we’d snuck into the park to accommodate Zachary’s GF/CF diet. My photo gallery even included a family portrait, slightly askew, of two grinning parents and their progeny staring off in the distance from the top of the ferris wheel, blithely ignoring entreaties to smile and look into the lens. It wasn’t a perfect day. It might never be most peoples’ definition of perfect, ever.
But it worked for us. And that’s all that matters.
July 14, 2010
“Your juice is coming, my liege” I assured Justin jovially as he settled himself into his extravagant English stroller, a device we acquired to accommodate the large frame of my seven-year-old autistic child whose persistent motor apraxia still precludes him from the boundless energy of a typical child his age. Normally I strap him in after each ride at Great Adventure, but our intended destination is the Runaway Train, a mere hundred yards up ahead, so close I can ascertain the hair color of its screaming passengers. As I release the juice box into his waiting hand, I am momentarily distracted by the loud chortle of one of the four teen-aged girls seated on the bench within inches of Justin’s knees. I glance quickly at the middle-aged woman in from of them who has just finished recording the moment for posterity on her digital camera, and know immediately she is mother to the two girls seated like bookends on the bench, as their collective likeness to one another is almost startling. I hear the slurp of straw that signals Justin is almost finished with his beverage, and as I reach for the empty container my foot becomes entangled in the combination lock wrapped tightly around the base of the stroller and the bench. I reach all the way down to the ground and move the last tumbler into the correct position, snake out our safety wire, shove it into the bottom of the stroller, and begin to move on to the terrors of Justin’s favorite coaster.
The stroller is weightless. He is gone.
Adrenaline courses through my body so swiftly, so profoundly, I actually feel my heard constrict painfully with the rush, coinciding with that first instant of knowledge that perhaps something irrevocable, unthinkable, has occurred. I look straight at the mother standing two feet in front of Justin’s empty vehicle, emit a primal cry of “Where is my son?”, and am rewarded with a look of utter indifference as the woman turns away and resumes her private photo shoot. I contemplate, without actually experiencing these thoughts coherently, that there are three options for his defection. To the right is the waiting ride; straight ahead is the restroom; and the last is to the left, where Wiggles World retains the rights to one of the saltiest pretzels ever created. I know it has been at most five seconds since he was cocooned in his throne, but there are moderate crowds today, and if I wish to maintain visual contact I must choose correctly. I understand the gravity of my choice, the weight of my decision, and instinctively I look to the left.
It is as I’ve thought. My son, with his awkward, loping gait, has gained purchase to two hundred or so yards of freedom from me, and is hell-bent on acquiring his favorite snack. He remains within calling distance, and I know a neurotypical seven-year-old would hear his mother’s voice, know he was in deep trouble, and stop in his tracks. I comprehend with complete certainty that this will not be the case with Justin. I rush after him, yelling his name anyway in the hopes some adult or security person will grab him, and I realize I am still clutching the stroller although I couldn’t care less about its worth or the contents of the bag it contains. I simply need to hold onto something at this moment, and my body will not allow me the release.
Within seconds I have caught him, finally abandoning my four-wheeled contraption and sprinting the last three or four feet to grab his shoulder and whip him around to face me. For a moment he will not make eye contact, his entire body still straining toward his aborted destination, his visual target clearly not his mother’s face. I say his name again, loudly and with force behind it, and he finally regards me, sees the look on my face, cups my cheeks, and pulls me toward him. He kisses me rapidly over and over, five, six, seven times, conducting his penance, admitting his contrition. He turns and seats himself in the waiting stroller, and as I secure the straps he again pulls me by the shirt and kisses me, looks me straight in the eye for one final apology, then points in the direction of Wiggles World.
I maneuver between two thoughts; that perhaps this is the second time in my son’s life he has pointed without the antecedent of a command, and that I almost lost my firstborn over a carbohydrate, a food group his mother tries often and unsuccessfully to avoid. I tell him we’ll get the damn pretzel, make certain his straps are secured together with military precision, and turn towards the Big Red Car. I can feel my fight or flight response dissipate, my heart rate return to some semblance of normalcy, and my eyes begin to well. I could have lost him today, my child who cannot say his name but would have certainly navigated his way to the precise location he coveted without assistance, only to be bewildered at the conclusion of his journey that his mother was not there to liberate his chosen food item for him. I am struck by the idea that I believe I should have known instantly he was missing, felt the air cleave between us at his absence. I almost cannot believe it actually happened.
In seven years, Justin has never attempted to escape from me, nor was he doing so now. The proper term for this event is called “eloping”, a romantic, wistful word hideously paired with an unimaginable terror. His need for proximity to me has always been a great comfort, eradicated the worry he might go missing. I know several parents whose offspring will do anything to evade their homes and caregivers, children who have been found wandering highways, roof tops, trees, and even neighbors’ homes. I have always been grateful Justin has chosen to remain near, has demonstrated no desire to elude those who care for him. He is one-third of his way through childhood, and it is the first time he has ever attempted this to such a degree. I am well aware it could have been his last.
I understand I have been given a gift, a second chance. I know my heart cannot endure the recurrence of even another few moments like these, nor the specter of a lifetime of knowing he is missing, no longer safe. I disengage the lock on the stroller and we move forward, but I feel we’ve taken such a step backwards. Today, one blessing that I took for granted has been irretrievably lost, even as my son has been most joyously found.
July 12, 2010
I dropped him off this morning at special needs horseback riding camp, my oldest offspring who seems to be demonstrating both an aptitude and a penchant for our equine friends. I could tell he recognized the location from the way he bounced back and forth in the harness I lovingly refer to as his “strait-jacket”, the adaptation on a car seat that allows me to legally and safely transport him since he learned how to evade the strictures of a conventional one. He’s been here several times with his school on class trips, and he knows this destination implies both a work requirement, and several opportunities to slide into the saddle and urge his horse du jour to “walk on”. He smiles ever so slightly as I help him disembark from the backseat of my SUV, and since there is no refund offered should he decide against my choice of filler between the end of the school year and the commencement of summer term, I am pleased. Five minutes in, so far so good.
I leave him in the director’s capable hands, and contemplate the fact I’ll have approximately three hours to myself for five consecutive days, fifteen hours in which due to the distance between camp and home I will be unable to exercise due to the heat, run an errand, fold laundry, or tend to my other child.
I am already inordinately fond of horseback riding camp.
As I sit here in the parking lot waiting for the outlets to open (because truly, in this part of Jersey, my options are shopping, staring at bales of hay in our disappearing farmland, or embarking on the Great Adventure Safari), it occurs to me that I might be misinterpreting my son’s approbrium after all. How can I be so sure he’ll enjoy this camp, the grooming techniques he’ll acquire, the obstacle course he’ll conquer, the crafts activities he’ll simply endure? How do I know for certain he’d prefer to be here rather than with his grandma and brother at the beach, or immersing himself in our pool for the forty-two minutes he’ll remain outside? My grand scheme of course, my Machiavellian exertions, revolve around him learning the skills necessary to make himself a valued employee on a horse farm someday. It is an endeavor I’ve latched onto because it is the only activity other than the thrill of roller coasters, or replaying the same segment of “Monsters Inc.” on his portable DVD, for which he has truly shown any consistent affinity.
The truth is, I don’t know if he’ll enjoy this, and his communication device, utilitarian at best, cannot help him indicate to me whether or not he’d prefer to work with horses in any future professional capacity. As with so many other events I have to guess, like when I ascertain what toy he is truly requesting when his Springboard can’t come through, or when I sense an exacerbated irritability is the manifestation of the onset of illness, not simply autism rearing its ugly head. I hope I’ve chosen right for him this week, both for his sake, and for those rare unfettered hours, for me.
And I wonder, as I watch the manufacturers open their doors to eager customers hoping for that next great deal, if there will ever be a day I’ll stop wishing he could just tell me what he wants himself.
July 7, 2010
“No honey, we’re going on an adventure, perhaps a great one, but not THE Great Adventure.” Zachary looked at me quizzically from over his breakfast waffle, clearly confused as to the day’s events. I assured him that he would enjoy our trip, and to eat his breakfast, because every boy who’s going on an adventure needs a full stomach. He seems to agree with this edict, and complies.
It’s Father’s Day, and I’ve booked the three of us on a pirate ship for the afternoon, which is perhaps not quite my husband’s idea of the perfect holiday activity. Today, however, dads go free, and even though it’s 92 degrees in the shade BY GOD we are going to take advantage of the bargain price. Besides, the free ticket helps mitigate the cost of the babysitter for Justin, who would relish this particular adventure about as much as he enjoys having his blood drawn. Face painting, group instruction on pirate lingo, sea legs, and treasure that doesn’t light up or spin- not Justin’s bag.
The entire experience however will be completely up Zachary’s alley, and it is evident from the moment we disembark from the car, grateful to find the last remnants of shade afforded us by a dumpster on the outskirts of the parking lot. My youngest son is mere steps from our vehicle when he insists on donning his black pirate hat, and even though I know wearing it might actually boil his brains, I concede. Unfortunately my boy reacts to heat in identical fashion to that of his mama, complete with beet-red face and drenched clothes reminiscent of complete immersion in a swimming pool. How I survived fifteen DC summers remains a mystery to me.
But today I’ve come armed with ice-cold water I’ve informed Zachary will be poured on him whether he likes it or not, and he is so entranced with the promise of upcoming activities he puts up little protest as I repeatedly splash him. After we check in and receive our “boarding passes” Zach asks if he can get a tattoo, and since he’s a Jersey boy after all, of course we give him our permission. He sits patiently in the sweltering sun to await the completion of a large, well-defined anchor on his arm, and at the conclusion of his painting activity declares “he is now a pirate”. I fully believe him.
Eventually, the head scoundrel’s buxom assistant calls all hands on deck, and approximately fifteen young buccaneers, ranging in age from three to nine, heed her request. They form a line. They listen to instructions. They repeat pirate axioms with great gusto. Zachary complies with almost every command, attempts the imitations of swarthy pirate moves, bellows pirate terms with great pride.
All of it, every syllable uttered, every movement replicated, seems miraculous.
Eventually we heed the siren call of “All aboard!”, and make our way slowly down the steep dusty slope to board our vessel. Zachary remains in line the entire way to the waiting ship, diverging from his set path only once to relinquish the pirate hat that has indeed begun to permanently alter his brain chemistry. Jeff and I stand off to the side and watch as a dozen or so young children board the boat, exchanging high-fives with the captain, and respond to the command of “all hands on deck” by haphazardly seating themselves on the bow. I watch with some amazement and disbelief, as I realize I have now participated in an activity with someone I’ve given birth to and not held their hand for over fifteen consecutive minutes.
I am already enjoying myself immensely.
Once we are out to sea we gratefully refresh ourselves with the welcome breeze the river affords us, and as I feel the sweat on my body transform into a light layer of salt I realize I may not melt after all. It quickly becomes obvious that parents are supposed to remove themselves somewhat from the activities, and I notice that most of the moms and dads have congregated in the stern of the boat, parceling out whatever remnants of shade they can find to one another. I lay claim to my personal patch of relief, and watch my husband as he searches for his own. I turn around and regard a gaggle of children watching the pirate’s vixen with intense concentration, as she outlines their journey, the upcoming conflict with a rogue pirate, and the inevitable search for stolen treasure.
Zachary is quietly ensconced within their midst, aptly listening. Obviously, he takes his adventures very seriously.
Our journey takes us a little more than an hour, and I watch transfixed as my son (for the most part) follows directions, douses that maritime villain with a cannon that dispenses water, and waits somewhat patiently to claim the treasure so rightfully his after his work on open water. He even partakes of grog (root beer, don’t worry) from an open cup, a receptacle he has adamantly refused to imbibe from both at home and at school.
Apparently drinking from plastic other than a sippy cup is only permitted on the high seas.
I realize, for the better part of an hour, I have sat or stood with my husband, felt the kiss of sun on my face, embraced the cooling gift of the river’s breeze, and left one of my children primarily to his own devices. We’ve even been treated to good tunes, with Springsteen being dutifully and appropriately trotted out intermittently throughout our journey. My husband, despite missing part of the Master’s, is happy. Zachary is ebullient. Although I’d require a margarita for complete fulfillment, I am grinning ear-to-ear with the normalcy, the peacefulness of this tableau.
Technically, this is not “my day”. But to me, this Father’s Day is synonymous with paradise.
June 8, 2010
This week, although my husband begged me to thank him simply because he is “mag-NIF-i-cent”, I have politely declined and decided to extend my appreciation to POAC, Autism Speaks, Eden Institute, and Autism New Jersey instead. This past Sunday Jeff was able to take one of his children to a sporting event for the first time ever, and it was a resounding success. Thanks to everyone who worked so hard to put Autism Day together at Trenton Thunder last weekend. We appreciate your efforts!
Tuesday Tips: “Three ideas for surviving summer”
Coach for parents of children with autism
1. For my high energy boys I find it essential to have at least one outing planned per day. It is really necessary to break up the day that way. The following is a list of all of our favorites which might be useful if you’re local! Avon beach (very calm water due to the secluded cove the jetties make); Dorbrook splash ground; Hurricane Harbor and Great Adventure Amusement Park – season passes are a must have, if you go twice it’s paid for itself; the safari at Great Adventure, rides at Jenkinson’s boardwalk and the aquarium, Allaire farm animal petting area, any park where you have well-marked trails (watch out for ticks though!) like Allaire State park, Shark River park.. we have a dog so dog beach in Manasquan is a fun place to go too. Popcorn Zoo and Cape May Zoo and Grounds for Sculpture are also great spots. Really fun indoor places are the Children’s museum at Brookdale College and Insectropolis down in Toms River. Being flexible has helped us tremendously… being aware in advance that things might not go according to plan helps to relieve pressure, anxiety and stress.. go with the flow! If you get somewhere and it is just too darn hot to walk around don’t torture the kids with a march through the zoo where everyone will end up cranky and miserable! Try to have a plan B in place! Also if something doesn’t go well one time don’t mark it off your list forever… my oldest couldn’t stand the feel of sand on his feet when he was 2 – 4 and now the beach is his favorite place (he started liking it when he was 5 and he’s 11 now).
2. I also hire teacher’s aides over the breaks during the weeks the kids don’t have summer school. A couple of days a week for a couple of hours lets me get the essential things done that might be extra difficult if the boys were around. They are younger aides generally looking to make extra cash during the summer and are energetic and happy to take one or two boys on field trips for me. I also have a mother’s helper who is a daughter of a friend… she comes with me on longer trips and the boys love her… she loves the boys and the extra spending money!
3. When home just getting them outside helps! Trampoline, pool, swingset, sprinklers, hot tub, a game of catch or tag keeps us from going stir crazy in the house! If it’s bad weather and we’re stuck inside the boys both like to stir and pour and make fun simple treats in the kitchen, games and books are a standby as well, blocks and leggos are essential to my youngest son who is crazy about building! Getting other kids over for play dates or going to their homes also fills out the days and I get to see and talk to other adults, an added bonus!