February 27, 2011
My husband just walked in the door with suitcase in hand, and except for the time my water broke in the middle of the night, I have never been happier to see this man in my entire life.
It’s been an interesting few days chez McCafferty while my spouse has been “working” in DC (just kidding hon), leaving me to fend for myself with the next generation. He only travels (abandons me) a handful of times a year, and for the most part, things run pretty smoothly during his absences. To date there have been no broken limbs, no trips to the ER (except on cable to visit Clooney), no true catastrophes that I haven’t been able to handle. I’ve been lucky, for although I used to command classrooms of thirty pre-adolescents with comparative ease, on occasion I have been brought to my knees by two particular children (you guessed their names correctly!) who reside in the single digit crowd. Fortunately, these occasions have yet to occur when I’ve been playing the role of single mom.
I believe they’ve consciously taken pity on me. I am grateful.
For the most part the past week has only been particularly challenging because I’m sick and subsequently not sleeping well, having contracted what I was certain was the Ebola virus, but fortunately turned out to be just a garden variety sinus infection. Seeing as this secondary infiltrator followed a three-week bout of bronchitis not nasty enough to incapacitate me, but serious enough to convince me I’d drown in my own fluids, I wasn’t really up for the solo parenting gig this time around. Throw in a gratuitous four-day weekend (the kids haven’t had five consecutive days of school since November and reality tv rules the world, are the presidents REALLY that important anymore?), and it is readily apparent how excited I was to spend some quality time with my kids.
Forget birthday presents this year. Somebody just buy me a damn nanny.
Despite my longing to crawl into bed with some Sex and the City DVDs, Dayquil, and if I’m honest, a “clandestini” (I saw it on Facebook once, have no idea what’s in it, but doesn’t it SOUND fun?), I managed to rise to the occasion, and do my job. For the better part of a week the children were fed, potty-trained, and bathed. There were trips to the arcade, Fun Time America (which, as you hopefully read, was quite an accurate description), and a twenty-four hour stint with an equally ill, yet still extremely helpful, grandmother.
Zachary, in particular, really made out. Every afternoon my youngest, after a great deal of manipulation on his part, convinced me I wouldn’t die if I got off the sofa and “played trains” with him, and I complied. After promising not to breathe in my general vicinity he was even the eager daily recipient of couch cuddles, followed by multiple variations of storytelling involving Zachary, Baby Jessie, and Rexy-the-Medium-Sized-Dinosaur. Hell, I even dragged my butt to Michael’s while he was at school and bought him Saint Patty’s Day crafts.
All in all, for once, it was good to be the second child.
I have to admit that when Jeff finally walked in the door, triumphant from a great work session near our nation’s capital, I was feeling a bit full of myself for handling the home front on my own. After all, I’d gone through six boxes of Kleenex and two bottles of Nyquil but the kids were still alive, and the house looked (relatively) decent. After Jeff ditched the suitcase, conducted the requisite rounds of hugs and kisses, and returned the exclamations of “He’s back, he’s back!”, he folded his large frame carefully and knelt down next to Zach at the kitchen table. While discussing the merits of dipping or not dipping a morsel of hot dog into ketchup Jeff waited until he had his youngest’s attention, then took his hand and asked, “Zachy, did you have fun with Mommy?”
My son continued to chew thoughtfully, regarded my husband seriously, and replied, “No”.
I wasn’t looking for either the medal OR the monument, but I admit I was searching for something a bit more complimentary than one negative, solitary syllable. Jeff regarded me quietly with a slight smirk on his face that I vowed to make him pay for later, shrugged his shoulders, and bent back down to answer an all-consuming question about the Chuggingtons from my deeply ungrateful child. I turned and headed back toward the sink, lightly touching the head of my oldest and momentarily favorite offspring.
After one brief stop at the refrigerator for the reward of that dark piece of chocolate I felt was my due, I reached that silver chasm of dishes and once again wielded a sponge at the hundredth utensil I’d cleaned that day. I sighed, relegated myself to the ranks of the unappreciated, and summoned the phrase so often stated by my grandma when I’d regale her with stories of poop, vomit, sleepless nights, and more poop, back when Justin was a mere babe.
Welcome to motherhood.
February 25, 2011
“No Justin, we have to wait!” I implore my oldest child, as he rejects the juice, popcorn, DVD player and toy I offer him in rapid succession. He is angry at me because I’m refusing to cater to his desire to visit the snack bar located in the middle of Fun Time America, which until a few minutes ago had actually lived up to its name. I’m summoning mean mommy because the line to acquire overpriced, undercooked carbs is thirty deep in there, and our chances of being seated are about as great as me being granted more than five minutes to myself at the end of this elongated holiday weekend. By accident Justin wrenches my wrist, and I feel my capacity for patience, already as thin as my annoyingly fine hair, completely snap. It’s been four consecutive days with children, I have a sinus infection that’s functioning as a bronchitis chaser, my husband’s away working in DC, and it’s winter.
Despite the circumstances, we’ve had a great time through the grace of POAC (Parents of Autistic Children), who have arranged for families with offspring on the spectrum to have the run of the place from 9-12 today, the last day of our celebration of the presidents’ lives. Since the weather out there is as pleasant as a trip to the DMV at the end of the month, I am especially grateful that we have somewhere to go this morning. The thought of schlepping Justin to our local arcade ONE MORE TIME is making me faintly nauseous, and this time I can’t blame the Zpack for my unsettled stomach. POAC, with their frequent family events, has once again saved my sanity.
I thought I’d discovered every remotely palatable venue for fun since we moved back to the Garden State five years ago, but apparently I missed one, and I’m thrilled to have a new option for the kids. Yes, it will cost me roughly a month of Zach’s college tuition every time I venture here with the boys. True, particularly at this time of the year, it’s a teeming germ fest. And yes, since Justin will force me to ride the spaceship simulator with him every time we cross the threshold, during each trip I will want to vomit at least once.
Again, it’s winter in central Jersey. It will be completely worth it.
We’re at the end of the event now, which for us has lasted an uncommonly long seventy-five minutes, a record with the McCafferty clan. Gary Weitzen, the founder of the non-profit, has asked me or my mother to speak for a POAC PSA before we leave, and since leaving my mom alone with two autistic kids under the age of eight in a crowded indoor amusement park is questionably a criminal offence, I’ve volunteered to take one for the team. The truth is my mother, with her thirty years in special education (culminating as it did in a stint as assistant superintendent in a large school district), will be far more compelling on camera than her congested housewife daughter. Within thirty seconds of waiting outside the staging area however it’s become apparent I’m going to lose a child if I don’t get some help, so I send Zachary inside to watch Grandma become a “movie star”. I then attempt, through my sinus haze, to conjure up productive ways to keep Justin calm for five more minutes.
All I can come up with is a trip to the bathroom. So much for creativity.
We pay our tribute to the questionably clean porcelain god (wipes, thank God for wipes!), and round the corner to what I hope will be a concluded taping. My mom has nailed her role on the first try, and since Justin is eager to enter the room and play with/dismantle the camera equipment, I allow him to barge inside. He actually becomes shy when he enters, and I quickly take the opportunity to seat him so I can chat with one of the volunteers, a POAC member I know well who’s filming the takes. Apparently Zachary has been enthralled with both watching Grandma speak “live” and seeing her simultaneously through the view finder, and in the spirit of the moment, the camera man asks him if he’d like to try it too.
Of course all I can think is “crap, he’s in a gray sweatsuit” (Toddlers and Tiaras’ moms have got NOTHING on me).
He lets himself be gently placed on his mark, the toes of his Spiderman sneakers jutting ever so slightly over the peaks of the black “X” criss-crossing the hardwood floor. Our filmmaker asks him to look into the camera, smile, and repeat several short taglines that will add a personal touch to statistics and facts, accomplishments and contact info that are the meat of a PSA. Since Justin is seemingly captivated by the unfolding events I walk over to the tripod and stand in close proximity, the better to encourage my budding star. Zach is asked again to look into the lens, and with enthusiasm utter four words I longed to hear eight years ago when his brother was first diagnosed, and our family was not as yet part of a community. He looks directly into my eyes, and repeats the words in a voice so soft and so utterly unfamiliar, I fear he’s spontaneously taken ill.
I smile at him encouragingly, and tap the black cylinder he should be regarding instead. I clear my throat and say in the best mommy voice I currently possess, “Louder Zach, you can do it, on the count of three!”, a command that’s a frequent pre-cursor to time-out, and one with which I’m certain he’s comfortable. I watch his entire body tense with excitement, and this time he stares into the correct spot, exudes a smile that engulfs his entire face, and repeats in a voice overflowing with enthusiasm, “YOU ARE NOT ALONE!”
This is my baby, who two years ago had a repertoire of five garbled words, found eye contact painful, and seemed to exist in a world of his own making. He is now standing still, following directions, and repeating entire sentences in an appropriate context. It is clear he is even having fun, and I watch contentedly as our director feeds him his last phrases. To say I am overjoyed watching him repeat his lines verbatim would be the glaring understatement of the year.
He nails them all, and asks for an encore.
I gently derail his dreams of fame and fortune and tell him it’s time to go home for lunch, and my mom and I begin the process of packing up children and gear to make the long trek to the car. Gary thanks us profusely, but I assure him it’s been our pleasure. Truly, in addition to training thousands of police officers, teachers, and bus drivers in our state, this man and his vision have also provided families with years of events where their kids can let loose, and just be themselves. While I deeply appreciate the former, the latter has proven priceless to this family. A few minutes surviving Justin’s irritability from denied access to carbs is the least I can do for them today.
Soon we’re buckled into our seats and navigating our way back to the parkway, Justin inhaling a juice, my mom and Zach engaged in a discussion about the current existence of dinosaurs. I am left to a few peaceful minutes with my thoughts (hallelujah!), primary of which is profound gratitude that I have found this organization, as well as the people encompassed within it. I know not everyone has a POAC in their backyard, and I never had anything resembling this non-profit during those long years in DC either. Perhaps the one thing I’ve learned however, the one universal I’ve discovered for all families in the almost-decade I’ve been dealing with autism, is this: make your “autism friends” wherever you can. Whether it’s a parent group, a mom in your special ed PTA, or a person you meet online, someone is out there to guide you and support you. Forge your connections whenever it’s possible, and never let go.
In the precious words of my youngest child, you are not alone.
For information on how you can volunteer for POAC, or just participate in their events, please visit the website at: www.poac.net
February 23, 2011
“Recalculating. Recalculating. Recalculating.” I have to laugh as my GPS scolds me for irresponsibly avoiding the most direct route and taking the “pretty way” instead, because I spend a good deal of my life kowtowing to that particular verb, and I can’t seem to evade that reality even when I’m driving. I’m on my way up to Justin’s school for his first parent-teacher conference, and I’ve left myself so much extra time “just in case” that I can indulge myself with river views rather than the parkway. I do a time check as I ease another Stevie Nicks CD into my player, once again ending the eighties as I disengage my Sirius radio. I’ll be early, but regretfully not early enough for a Wegman’s run, and I chastise myself for answering emails this morning when I knew I’d be in such close proximity to food mecca later.
Priorities, Kim, priorities.
I glide serenely into the empty guest parking lot, happy I’ll have enough time for chit-chat with the lovely secretary who endured my multitude of inane questions when Justin first began attending school. She kindly lets Justin’s teacher know I’m here, and makes certain the class won’t be parading by the waiting area any time soon. In ABA terms Justin and I are “well-paired”, and if he even caught a whiff of mommy in the house, no matter how much fun he’s having at the time, he’d demand a quick departure. This child is even excited to leave school for a doctor’s appointment.
He is truly a momma’s boy.
Fortunately, today I don’t have to execute a duck and run, and as my son’s lovely teacher soon makes her presence known, we retire quickly to one of the administrator’s empty offices. She is a passionate educator, and it was evident the first time we spoke this summer that for her this work is a vocation, not a job. Given my dozen years in the profession myself I was ecstatic with our conversation, and I clearly recall hanging up the phone and executing the “happy dance” for Jeff, the image of which I will leave to your imagination. Although legally I’m only entitled to “free and appropriate” for Justin, we’ve managed to score “fabulous and exceptional” for him, and I still haven’t recovered fully from the magnitude of our good fortune. I continue to try and temper my joy just so I won’t completely terrify her.
She’s come encumbered with lists and folders and work, although we put aside his academics for a moment to discuss his behavior first, which for the most part has been as appropriate as possible for a moderately autistic youth. I am told that Justin’s weekend lunch date has taken on the mantle of “big brother” to my oldest child, and although my son generally ignores the rest of his classmates, he permits this particular boy to instruct him in the “fine art of school” frequently. He even looks for his buddy at certain venues, the computer, the playground, or the dreaded PE class, which he seems to enjoy about as much as his mother did. I am also informed that my son is a surreptitious hugger, often sneaking up behind his adored teacher and turning his face to hers for one of his intense gazes, followed by lip-lock, for no apparent reason at all.
He began this behavior at two. I’m happy to see the tradition has continued.
Since we only have thirty minutes together we dive into his academic progress next, and I sit up a bit straighter in my chair. She tells me he is flying, which I already knew somewhat from our daily email exchanges, but I was not aware how far, and how fast. She says she is thrilled with his progress, and confident that he will one day type in a manner more meaningful than the hunt-and-peck methodology I tell her he shares with his father. She positively beams as she explains he is soaring through his reading comprehension exercises. Given how many years his mother spent with her nose buried in books, there are no surprises there.
Math is his weakness (no surprises there either), but he continues to make inroads into that domain as well, despite the flip side of his maternal genetic legacy. He’s not a genius, my boy. But he has exceeded her initial expectations, and she remarks how rewarding it is to see him so excited by learning, how eager he is to come to the table, so to speak. She is pleased to see how aware he is, how bright. I tell her those latter facts are at once so gratifying, and so difficult to endure.
She says she understands. And I know she does.
After I finish willing my saline-laden liquids back into the ducts from whence they came I gingerly broach the future with her, because I’ve come to accept that living in the moment is a goal not easily mastered for me, and I just have to roll with who I am. One of my greatest fears is that when my son is grown there will be no job options for him, nowhere for him to spend his days other than at home with his aging, and most likely exhausted, mother. Despite his intellectual aptitude my son is held captive to the strictures of perseveration, the ritualistic routines that often prevent him from completing a task. There are entire days, if he were allowed, that he’d spend more time in the closet arranging his toys than I would organizing my wardrobe.
I worry that this issue, coupled with his proclivity for egress from everywhere after half an hour, will preclude him from meaningful employment. Again, I’m not asking for Wall Street, or a career in education, which is much more up my alley. I’m simply asking his teacher if she thinks one day, with a bit more maturity under his belt, he’d have the aptitude to labor at some occupation he might even enjoy, and would there possibly be a place for him to do so.
This time she straightens up in her chair, looks me right in the eye, and says “absolutely.”
Those damn ducts betray me as a few tears gather conspicuously in the corners of my eyes, and I exhale both physically and mentally, and smile. She tells me nothing is certain, the fact of which I am reminded on a frequent and daily basis, but the prospects are favorable. I really wish foretelling the future was a cornerstone of her contract, but I resist telling her this.
We end our meeting as snack is soon to conclude in Justin’s room, and I am loathe to take his teacher away from anything remotely academic. She shakes my hand firmly, looks me in the eyes, and tells me how much she adores my boy, how happy she and the faculty are that he is a student there, that he graces her classroom. I commend her profusely for taking such good care of my son, and tell her that her professionalism has a ripple effect that far exceeds Justin, and extends to our entire family as a whole. I tell her I appreciate all of her hard work. I thank her for “getting him”.
And as I leave, I allow myself, for the first time, to contemplate the stunning idea that one day, my boy might actually have a job.
February 22, 2011
This week’s Gratitude Attitude goes to my mom, for helping me with the kids when my husband was away. It’s so wonderful for the boys to have such a great connection to their grandma, and I can always use the help! Thanks to Grandma for the stories, hugs, and providing me with adult conversation!
February 20, 2011
“MOMMY, DADDY, I NEED YOU!!” screams my four-year-old from his room upstairs, in his usual dramatic fashion. I sigh, because Oprah’s assistant is freaking out about how best to convince her boss that an hour about thirty-something virgins would interest America (this woman is amazing, I wish she’d live here and organize MY show), and I’m certain the next few minutes will be completely compelling. I also exhale dramatically because assisting my son will require me to actually put down Francis Ford Coppola’s vineyard coup AND rise from the couch, and neither action is particularly appealing to me by 9:00 PM.
I suck it up and quickly take the stairs two at a time, but not because my youngest is in distress (this is a nightly event now, he is most assuredly safe). No, I’m exercising more than I have in days because the thought of my youngest waking my oldest (and taking me away from reality television for an hour or two), is simply unacceptable. After all, I did six loads of laundry today AND kept both kids alive. Mommy deserves her rewards.
I enter Zach’s room with Jeff close behind me, and slide into the sanctuary of muted light and soft sounds emanating from his sleep machine and humidifier. Both boys have enough white noise in their rooms to block out the apocalypse, as Justin has a penchant for that 3:00 AM wake-up call, and sometimes Zachary doesn’t fall asleep until 10:00. One of my worst nightmares is that both will awaken simultaneously one evening while Jeff is away, and I’ll be forced to enact my own nocturnal version of Sophie’s Choice, which I’m certain will have me regretting not having had those tubes tied a little sooner. As a precaution to that event we’ve basically recreated the womb for our children, and this time, I expect them to stay in it.
Zachary spies us and shouts a gleeful “Mommy! Daddy!”, as Jeff quickly shuts the door behind him to drown out his enthusiastic greeting. We approach him with arms outstretched and quizzical looks on our faces, as it’s apparent he hasn’t pooped, which we’ve told him is really the only acceptable reason to call us back into his room after he’s been deposited in his crib. He looks at us with utter seriousness and says “The T-rex is back! He’s outside my window right now! SCRITCH-SCRATCH, SCRITCH-SCRATCH!”. He’s adapted and plagiarized that last little bit from his new favorite book We’re Going on a Bear Hunt, and while I’m impressed at his ability to convey the sounds of an extinct monolith ruining our outside paint job, I admit I’m a little annoyed. This is the fifth night in a row he’s been up late, which means the next morning his emotional state will undoubtedly resemble full-on menopause (and no, I’m not quite there yet).
Jeff bravely takes one for the team, and attempts to reason with him. “Zachy, remember, the dinosaurs have been gone for millions of years. There are no dinosaurs outside of your room.”
Zach regards my husband with a mixture of mild amusement and disdain and responds, “No Daddy, not the REAL T-Rex. It’s the pretend one.”
Right. Of course. How silly of us.
I lift Zachary out of the soft folds of his blanket and seat him onto my lap on his glider, and together we tell his daddy to “fix his crib”, until every blanket, sheet and pillow is aligned perfectly and conducive to what I hope will soon be my son’s slumber. I remind him that his parents would never let anything or anyone bad into the house, no ghosts, goblins or pre-historic giants, either real or imagined. When he tells me he heard a sound, I respond that he’s only heard the wind whipping the eaves of our house, and ask him if he remembers we’ve told him he’ll always be safe here with us. He smiles, and says he does.
He somehow smells slightly of cinnamon and nutmeg, although given my baking inadequacies, I’m not sure how. When Jeff completes his ministrations within the blankets I’m loathe to return him, even with Oprah Behind the Scenes on pause. Eventually the allure of cable wins, and I return him to his crib carefully, and watch as he snuggles into the blankets his father and I gently rearrange around his relaxed form. He asks for a “hand hug” from us both and we comply, then wish him a good night’s sleep as we exit his room.
And as Jeff returns to work and I head down the stairs for the mecca of brief escape, I remind myself, no matter what time of day they occur, to always savor the good fortune of my youngest’s repeated encounters with the land of the lost.
February 17, 2011
Justin and I have pulled into the parking lot of the closest movie theater to our home with an “autism showing”, and he is literally vibrating out of his seat with anticipation on this blustery Saturday morning. We’ve never frequented this venue before as this locale has just instituted AMC’s monthly tradition, and my son looked a little confused as we bypassed the mall mommy loves and swerved around to the theater instead. Once he saw the “divine Miss M” walking toward us all became clear however, and his litany of “eee sounds” accompanied his rhythmic rocking as he strained toward the front seat with delight. We quickly park as we are running a few minutes late, and we hurry toward the building as there are still tickets to acquire, a potty to visit, and most importantly to mommy, buttered popcorn to purchase before the prompt 10 AM showing.
If I have to sit through yet another animated movie, I’m getting something good out of it too.
AMC Theatres began incorporating this showing into their film schedule roughly a year ago, and I quickly found that the small changes they’ve instituted for families with autistic children have their benefits. Each month a kid’s film is unveiled on a Saturday morning at 10:00, which generally precludes a huge crowd due to its early showing. There are no previews (which since the chosen film is always a kid’s show, mommy likes), the lights are left dimly on, and unlike most everything else in my life, the event always starts on time. Best yet, it’s understood that kids are permitted to do almost anything in the theater, from throwing a tantrum to reciting every line from the show (or any movie for that matter) at high decibels, verbatim. For approximately an hour and a half, it is a safe zone for children with autism to just let loose and be who they really are.
Even if it’s loud, messy, and often highly irritating.
Ironically Justin’s behavior has generally been perfect in the movies, and until a year ago I took him to the “regular” showings, where he’d nurse his small, calorie-laden kernels for the better part of the show, sometimes sitting on my lap as I deftly maneuvered thin mints into my mouth, quickly followed by a Coke chaser. I actually enjoyed taking him as he always remained quiet during the show, stayed relatively calm, and gave me an excuse to consume candy without guilt. We never made it quite to the end of any story, but it was always close enough that I could anticipate the ending, and was never that upset about leaving early.
It doesn’t take much to make me happy.
Unfortunately, for unknown reasons I’d like revealed to me before I die, since the beginning of 2010 Justin has decided that no event we attend should last more than twenty-seven consecutive minutes, and what with the economy and all, it just seemed a little wasteful to exit the theater after half an hour. There was one Saturday morning where the projectionist mistakenly aired the previews, which meant that Justin announced our imminent departure approximately four minutes after the film had started, and I knew something had to change before I’d return. If I was going to spend the equivalent of a night at Applebee’s, I’d like to get my money’s worth.
Yes, here I go with those extravagant dreams again.
So we took a hiatus from Hollywood for a time (I’m sure they missed us), but now that (by God!) we’ve conquered bowling as a complete family, I am determined to add at least one more activity to our repertoire. Miss “M”, to my delight, has agreed to accompany us to the theater and work with us at home several times, using her behavioral techniques to shape Justin’s behavior. I’m hopeful we’ll eventually be able to work him up to sitting through an entire show, which will allow the four of us to share yet one more fun activity together, as well as afford us the luxury of arriving and departing in one vehicle.
As with everything ABA it’s imperative to come to the table prepared, and of course Miss “M” has already thought our new desired routine through, and has brought the necessary materials with her for the morning. Justin always seems to make his desire for departure known after he’s finished his snack, so Miss “M” has purchased Ziplock baggies with which to divvy up his popcorn, the act of which will be conducted out of his sight while I take him to the bathroom. She has created another one of her wonderful visual strips, complete with tiny laminated photos of his preferred film food, a random toilet, an attempt at capturing a shot of the movie itself, and last, a photo of my car. By some miracle I have remembered to bring the timer, so in theory, our goal of getting him to sit through an extra fifteen minutes of Gnomeo and Juliette should be successful.
We finally make it into the theater with child, plastic bags of popcorn, and goodie bag in hand, and settle into great seats center stage, with nobody directly around us in case of a mild skirmish. The movie has just begun, and as I help Justin off with his coat Miss “M” assists me on the other side. He slowly slides down into his seat, already searching around for the brightly-colored bag that signifies movie food mecca. There are the faintest rumblings of a low-grade whine just beginning in his throat as Miss “M” quickly intervenes, extending the “magic velcro strip” to him, cluing him into his visual cues. He is mollified, and the whining (to my intense happiness), desists.
Our BCBA gives his pointer finger a workout as she prompts him to indicate the photo of the film with a quick jab, then she quickly reveals to him the timer with its sliver of bold red, signifying minutes not yet elapsed. She then counts to ten, prompts him lightly to remove the laminated square and hand it to her, after which he rapidly points to the portrait of the “yellow tower of crap” on his own. She hands him a generously-filled baggie which elicits a mild protest as it’s not in its original receptacle, but the allure of consuming carbs wins out over its unacceptable packaging, and he munches his prize contentedly. With the exception of the RUDEST FAMILY ON EARTH attempting unsuccessfully to block my son’s view by claiming the row in front of us twenty minutes into our gnomish tale (really lady, given the way you’re staring at the more vocal children in the theater I’m quite certain your kids are “normal”, can’t you at least get here ON TIME), everything runs smoothly.
Miss “M” has me run time checks, and after Justin eats enough baggies of popcorn which, had I consumed them, would have forced me to go up a dress size, it becomes clear that he has had enough. My boy stands up and politely hands me his empty juice box as well as the white bag which always signifies departure, and at Miss “M’s” prompting, I look down at my timepiece for one last check.
We’ve remained here happily for almost fifty minutes.
I admit, I’m almost giddy as we leave the establishment (like I said, it doesn’t take much these days), hopeful that we can eventually stretch this out, fashion this event into an outing for everyone. Miss “M” will meet us here next month as well, and in the interim will practice having Justin watch long stretches of DVDs with her at home, which given his penchant for watching the same thirty-second clip over and over again, will prove interesting. If anyone can pull this off it will be her, and I find myself smiling as I strap Justin into his complicated contraption in the backseat, and finalize plans with our BCBA. The feeling I’m experiencing has lain dormant for a while, tantalizingly near on some days, but only recently making its welcome presence known into my life once more. I savor the moment, mark it, remind myself to recall it later for Jeff as the two of us slowly make our way through the grid of cars to the remainder of our day, and the highway beyond.
The feeling is that elusive emotion, called hope.
February 15, 2011
Several decades back, more years ago than I care to admit, I was a young girl growing up in the suburbs of Jersey, dividing my time between school, family, friends, the beach, and a good book. Most of those reads were fiction, with special appearances from Ray Bradbury and Isaac Asimov, the lovely gentlemen who colluded to help me fulfill my adolescent sci-fi fetish. A Wrinkle in Time, My Friend Flicka, The Egypt Game, and anything Nancy Drew were considered trusted friends, a lovely way to get through an afternoon in an era where texting and the internet were as yet distant dreams. There were, of course, a few interlopers into my fantasy/fiction mix. These infiltrators were the books based on the lives of famous women my mom encouraged me to read, which I secretly did, although I pretended to regard them with utter disdain and banish them to the corner of my room.
I was twelve, and they were from my mother. I’m sure by now she’s forgiven me.
One of those biographies was based on the life of Amelia Earhart, who even among such giants as Elizabeth Cady Stanton, Susan B. Anthony, and Harriet Tubman, left a considerable impression on my as yet unraised consciousness. I was impressed by the bold way in which Earhart lived her life, her continual forays into domains previously dominated by men, her survival of a somewhat tumultuous childhood, the fact that she preferred to wear pants. I was hooked on her life well before I got to the denouement, that fateful trip concluding over the Bermuda Triangle where she and her navigator Fred Noonan seemingly disappeared, vanishing into the gray-green seas that seemed to swallow them whole, without mercy.
I remember thinking that up to this point in my young life, I had pretty much solved the mysteries of my particular universe. Santa and the Easter Bunny had been thoroughly debunked. I understood that my little brother would continue to mess with my stuff for the remainder of my childhood, simply because he could. Certainly, I hadn’t quite resolved the whole concept of death and the afterlife yet, but I figured I had time, and if everyone was wrong, I’d just get to sleep.
Even at twelve, sleep was a good thing.
I recall moving on from biographies to boys around that point, and I literally shelved the fate of Amelia Earhart along with that of the suffragettes, figuring we’d never really know her true ending, would have to relegate this mystery, along with why My So-Called Life was canceled after one season, to the ages. I admit, at the time, not having closure to the conundrum of her last whereabouts bothered me. Since it had happened in 1937 however, more than forty years before my adolescence, an absolute ETERNITY of years to my younger self, I assumed the mystery would never be resolved. Apparently, I’d just have to live with that unsatisfying ending.
The experience would be good practice for the future.
As it turns out, the universe may have granted me a reprieve on this one, as a half a million dollar investigation has recently led to the discovery of a mirror, button, zipper, and several shards of bone on the remote island of Nikumaroro, a location almost thousands of miles south of Hawaii. Despite the fact that the Brits managed to lose track of a skeleton discovered on this tiny postcard of land just three years after the crash (I’ve since forgiven them as there was a world war going on after all), this miraculous find may lead to a definitive answer regarding Earhart and Noonan’s combined fate. It’s been seventy years, millions and millions have been spent on an attempt at reaching a final truth, and to date, there are naysayers who claim it’s impossible for any conclusion other than that a confluence of unfortunate circumstances relegated these two brave souls to the vast and unforgiving waves of the Pacific. Their dual demise, and what caused it, as yet remains ambiguous.
Remind you of any other universal uncertainties?
Yesterday I watched as my almost eight-year-old child conducted his own exploration that wielded for him exquisite treasure, namely an infant’s toy he hasn’t played with in years, one summarily abandoned by his own brother during the decade prior. He had been in what I like to call “bear stage” all morning, with nothing appeasing him, consumed by the demons in his mind that render him alternately mired in his perseverations and engulfed in despair, or anger, from time-to-time. Usually, when he’s a captive to these moods, I try to derail him from his compulsions to reorganize and recatologue because he can’t ever seem to force his configurations into coherent order. His attempts, sadly, seem only to leave him in greater distress.
This morning, however, I’m also dealing with his somewhat cranky sibling, and I’ve left him to the comfort of the closet, where indeed his needs seem to be sanctified. He has unearthed this tiny remnant of his childhood, is cupping it happily in his hands, repeating its siren song of beeps into his ear over, and over, and over. He is immediately transformed by his discovery, replete with joy at this memento from his “youth”. This tiny plastic cube, with its accompanying keys and sonorous noises will, while not solving what caused it, keep his dark side at bay for a while. Its acquisition is palliative, not remotely contributing to the origin of why on this day he requires either order, or the discovery of an old friend, to dissipate his gloom.
In just a few more months, the DNA results from those infinitesmal scraps of bone from that remote patch of land may yield proof of origin, an absolute certitude that only science can fully render. Even if those fragments lead to a positive identification of those fearless explorers we will never know for certain the cause of their crash, how long they lived in exile, how they died, their last thoughts on earth. We will never really know the whole story.
The news is also full these days of possible reasons for the birth of autism, theories touting rogue mitochondria, vaccines, or the overuse of cell phones by multi-tasking mothers, while embryonic cells do their job of replicating to completeness in a darkened womb. Perhaps one day I’ll know how this situation came to pass for this particular child, what possible combinations of genes and environmental influences combined to alter the connections in his brain, and the trajectory of our family’s life. In the future, I may have a name for the culprit and its companions, or the reasons for the derailment of synapses gone awry. I know that ultimately Justin’s mind holds the key to this discovery, and it is some solace to me that perhaps someday I might know the pathway to this disorder, the steps that occurred to bring us to this often impossible place.
But I am remain aware, that even if I one day comprehend the science, I will never know exactly why.
Today’s Gratitude Attitude goes out to all of Zachary’s family members and friends who helped make this fourth birthday so incredibly special for him. He is still talking about his multiple celebrations!
February 13, 2011
I know. Tomorrow is Valentine’s Day, a holiday that’s supposed to be about romantic love. The truth is I already composed my opus to my husband last year with The Good Life, and I don’t think I can top it. So here’s a piece for my other loves, my little boys. Happy Valentine’s Day!
You curl into my mid-riff like a comma, head and limbs tucked snugly between us, always still as you emerge from slumber.
Your big brother remained in motion, arms and legs wrapped tightly around my torso, ever-shifting, never static as his younger self would greet the day.
He remains like that in life as well, with his strong hugs that literally take my breath away before he quickly disengages, constantly moving, rarely at rest.
You, however, are my own personal pause, the child who forced me to tame the torrent in my mind, shelve the worries over your collective future, and simply learn to savor the moment.
I love you both so deeply, my forever child, and my child for whom forever embraces the infinite realm of so many possibilities.
I love you always.
February 10, 2011
It’s a frigid Monday night in central Jersey, and the staccato crunch of heels on crusted pavement is keeping time with my racing heart as I power-walk to my intended destination. I’ve managed to escape the dinner hour to return “home” for a meal with two dear friends, and frankly I don’t want to miss a minute of it. I literally had to peel Zachary off my body as he begged me to “please stay, DON’T GO ON VACATION!!”, knowing full well that telling him mommy only visits the scene of her childhood approximately four times a year will carry no weight with him at this moment.
Through the wonders of that 80’s channel on Sirius radio, I’ve managed to shed the images of the resulting carnage I left behind for Jeff and the sitter (Zach melted into a puddle in the foyer, Justin comprehending my departure and making a dash for the door to reign me in). After forty-five minutes of driving I’m finally happy, and as I make my way down streets whose highlights used to be a five-and-dime and a record store, and are now redolent with chichi restaurants and high-end couture, I’m committed to remaining that way for the rest of the evening.
As God is my witness, I will have fun for two consecutive hours even if it kills me.
Soon after Jeff and I relocated to Jersey after our fifteen year stint in Washington, DC, I threw a rather small “social net” out to women whom I’d run into at our last reunion who’d remained in the area, women I had been friends with, or just liked. I kept our dinner small because I live the better part of an hour away, and as getting to the ATM on some days has been a struggle, I knew I’d have limited opportunities for socializing. So, one cold winter evening I co-hosted a night out at a local bistro with a dear friend, and waited to see which relationships would be reconnected. Our dinner guests were, and remain, lovely people, and a number have become email “pals”, or the occasional lunch date since that time. One of those women I’m dining with tonight, was someone I was close to in my youth but had lost touch with after graduation, and it’s been a joy to reforge that bond with this wonderful “girl” as we catch up on the last twenty-plus(!) years we’ve been apart.
My other dining companion from that long-ago meal I’ve known since we were fourteen, when the dark blonde braids of her hair graced my desk in English class, and we desperately tried not to get caught passing notes (remember note-passing?) as we debated the merits of one boy or another. She remains strong, smart and beautiful, and best yet shares my somewhat unique world view and sense of humor. I knew within months of meeting her we’d be friends for life. This girl would eventually be a bridesmaid.
And fifteen years later, she was.
I reach the cozy restaurant that has become “our spot”, exchange hugs, shed coat and gloves, and gratefully slide into my seat. It’s been a few months since our last communal repast, and we have to discipline one another to cut the chatter long enough to order since we’re all starving. One friend has just had a baby, and we pause in our not-so-worldly discussions long enough to pay due to her little girl’s beauty, then settle in for bread and the wine she always (thankfully!) remembers to bring to this non-licensed establishment. We quickly fall into a rhythm, conveying moments from our lives punctuated by the light laughter of friends who know one another well. We discuss our children, our spouses, our favorite reality tv shows, and even make a brief foray into world affairs (I’m so proud of us). It is a safe place for we three women, this venue where we can share our lives, laugh at the absurdities, and best of all, trust that none of it will ever leave the table.
It is sanctuary.
All too soon the evening concludes, as the weight of laundry, husbands and child care summons us back to reality, and I find myself embracing my companions goodbye, with the promise of another evening to come in the not too distant future. I settle myself in for the fairly long drive home, and smile at the fact that I’ve indeed escaped the daily confines of my life for just a moment, have had a meal served and cleaned up for me, enjoyed the pleasure of discourse involving multi-syllabic words. I’m reminded how imperative it is to have these evenings, to walk out of my life for just a little while. No matter what is going on at home, it’s still important for me to have some fun.
As a great “Wham” song reverberates around my car (are there any bad “Wham” songs, really?) and I make passage to the Garden State Parkway, I am reminded of several wonderful posts I’d read recently from two of my favorite bloggers, a diary of a mom and Professor Mother Blog, who recently made impassioned pleas for all of us to address our emotional needs, to seek the help we might require as we dance through the difficulties of raising “different” kids. The essays were exceptionally written and translated to all women, both those encumbered with the blessing and burden of “labeled” children, and those without. I personally forwarded them on to a few friends, none of whom happen to reside with autistic offspring. They were timeless, important pieces, and I hope you have the chance to read them for yourselves.
Their words transported me back to a time when I was mired in the mess of it all, the year leading up to Justin’s diagnosis, and the one following Zachary’s. The days where despondence seemed our family’s version of “normal”, where the act of reaching out for comfort or solace was almost harder than simply embracing the depression. I eventually did seek help both times, through several parent support groups, via the purge that was writing my manuscript, and the relief of discussing our day-to-day travails with friends experiencing our version of family. I finally received what I needed, but first had to claw my way to a place where I had the energy to do the work necessary to once again render me happy, to even want to do the work to return to that place. For a time, I was shattered. I knew, in order to be the mom my children needed, I’d have to summon the energy to refashion the pieces of my life into some semblance of a cohesive whole, albeit a changed one.
And after a time, I did.
I’ve learned to live in that reconfigured world, where most days seem filled with light rather than shrouded in darkness. I dwelled in that post-apocalyptic place for a while however before I realized something pivotal remained absent, some core part of me still denied. Eventually, although it took a while, I figured it out.
Girlfriend needed to have some fun.
And although I couldn’t see it at the time, that desire for frivolity is the equally important twin to seeking solace, the codicil to regaining that precious mental health. I started out slowly. At first it was a phone call here or there, then a short lunch. Sometimes it was simply a trip to the book store, a frappacino as my silent guest, the wanton escape of a well-written novel in my tired hands. In DC I eventually reestablished connections I’d let falter, and here in Jersey I’ve forged new friendships, created a new kind of life including forays, although brief, into fun. The truth is, no matter what our kids are going through, no matter what issues are transpiring in our homes, one thing is certain. This is the only life you’re going to have. Carve something pleasurable, no matter how small at first, or how difficult it is to do, back into yours, for you.
When you’re ready, and you’ll know when, just try to have some fun.