December 22, 2011
I know. Everybody hates repeats.
Each Christmas since I’ve begun writing there has been either some miraculous occurrence or some serious debacle with one (or both) of the kids around the holidays, an event of such significance I would feel compelled to write about it. This year, I have to admit, I’ve got nothing. Chez McCafferty, things have been (dare I say the word), almost “normal”.
And boy, does that feel good.
So, I’m summoning up the repeat, a piece I wrote last year about making a gingerbread house with Zach (constructed out of felt people, you are familiar by now with my lack of culinary skills). I’m reposting it in part because I just don’t have anything that fabulous to write about for my holiday post, and in part because I simply love this piece.
But for those of you who have been with me since last year (and there are more people than just my mommy now, it’s quite gratifying), I’ve included a little letter to Santa from moi, just so you don’t feel completely cheated (after all, how would you make it through the holidays?).
So whether you’re celebrating Chanukah, Christmas, or any other holiday, here’s sincerely wishing the best to you and yours, as well as a profound thank you for taking the time to read my little missives. I’ll see you for New Year’s.
Love and joy to all…
According to my husband I have been an extremely good girl this year (which means I’ve been slightly less than a cranky old harridan most days), so I thought I’d send you a letter with my requests (demands) for my exceptional behavior. We are an ABA family here, and since I’m well past “sticker stage”, here we go:
1) Bring me more patience to deal with my kids (and we’re talking a veritable boatload here).
2) Return some semblance of my failing memory to me. I’ll even take what I had at forty. I think I was “zippier” then (but I can’t remember).
3) Bring Kim Kardashian some post-divorce peace. We share the same first name, I feel compelled to do my part.
4) Let my autism play not sucketh.
5) Let me not lose all of my friends when I mention said autism play on Facebook 1,000 times a day after the holidays (and if I ever figure out Twitter, the same goes for that damn social media outlet too).
6) Did I mention bringing me more patience? If so, refer to request (demand) #2 please.
7) Bring on the world peace (duh).
8) Let my boys remain independent, happy and productive (had to get one more serious thing in here!).
HAPPIEST OF HOLIDAYS TO ALL!!!!
May 18, 2011
Even at the tender age of eight, my son Justin has somehow managed to acquire several paramours during his short stint on earth. First, there’s the love of his life who lives around the corner, a girl for whom he would do anything. This dedication includes shoving me out of the room whenever she arrives to play with him (in a painful, bruise-in-the-small-of-the-back-kind-of-way, it’s a proud moment every single time). On a local beachside playground there was a lovely teenaged girl we continually encountered on summer afternoons, a love interest with whom Justin shared his toys, and his kisses. There have been mild flirtations along the way with the few girls in his classes (that 4:1 boys to girls ratio for autism has not been in his favor), including a young blond thing in pre-school for whom he tried to escape his classroom whenever he caught sight of her. Let’s just say, his one-on-one aide was in great shape that year.
And then, there was Kerry.
I’ve written about Someone Special Needs You (SSNY) several times since I’ve begun this blog, not because I’ve run out of things to talk about (trust me, with autism, you never run out of things to talk about), but because it’s carved out such a unique place within Justin’s lexicon of activities, and within my heart. It’s a group which convenes eight times a year in a church in Colts Neck, NJ (nope, it’s not religious in its origins), and includes neurotypical teen-age peers and children with a range of disabilities as well. Sometimes there’s a theme, such as Christmas/Chanukah or St. Patrick’s Day. On occasion the group’s founder, Vince Scanelli, hosts a full-fledge carnival, or a graveyard Easter Egg hunt. There’s always a craft and an abundance of snacks, which Justin usually consumes as if he’s eating for three. For the most part my eldest only deigns to share his company with the group for about half an hour, but I know on some level, he enjoys his participation.
But the best part for him, hands down, has been his buddies.
Justin has never been a patron of the arts-and-crafts, and I’m pretty certain even the allure of unlimited potato chips wouldn’t convince him to get out of the car at 6:30 at night, at the end of a long week at school. No, the single most motivating factor to inspire Justin to do something other than handle toys that light up and spin, has always been women. This is a trait he seems to have inherited from both sides of his family, with the sponsors being his father and maternal great-grandfather, respectively. My son loves being fawned over (as on occasion, have said father and great-grandfather), and for at least a limited time, will do absolutely anything for a pretty, smart, kind girl who’s been his friend for four consecutive years (that includes painting a damn leprechaun).
And since he was four years old, for most of the time he’s participated in this group, Kerry has played the role of primary reinforcer.
Justin’s fabulous buddy is a senior in high school, and although I’ve had almost half a decade to prepare for her departure (come on girl, what about online learning, it’s the wave of the future), I was still unaware that our April get-together would probably be the last event my son would be able to spend time with her. I thought we had one more gig in May, during which I would have actually remembered to bring my camera and at least presented Kerry with some photos to remember Justin by, but I was informed early in the event that our sojourn to the gymnasium that evening would be our last until September.
Once I saw that Kerry had made it, and that Justin would get to say goodbye to her, I rallied (never let it be said I’m not a rock of a woman). I left the two of them to their own devices, and helped my husband keep Zachary alive, which given the height of some of the equipment and my youngest son’s refusal to fear anything, was no easy task. I admit, I was easily able to put Kerry’s imminent departure out of my mind in an effort to ascertain exactly how many exits Zach could escape from in each bouncy unit (generally, there were no less than three, Jeff and I were outnumbered).
Eventually, after an hour of gut-queasy bouncing and multiple room changes, the evening concluded. I asked our soon-to-be-former buddy to escort Justin to the car so he, and I, could say a proper farewell to her. Jeff and I successfully strapped two hyper, over-tired young children into our SUV, I counted the twelve bags that comprise our entourage wherever we go, shoved them in the trunk, and asked Kerry to lean in and hug Justin. She did as asked, extending a full-body embrace and a kiss on the head to my boy, then she turned back to me to say goodbye and hug me too.
I opened my arms, got out “thank you for everything”, and totally lost it on the shoulders of an eighteen-year-old girl.
In my defense, just prior to completing that circle of love, Kerry shared with me that she would be studying to be a speech therapist in part because of Justin, and frankly, I’m not certain how I could have contained myself after that declaration. As I’ve mentioned before, I’ve managed lately to relegate most weeping episodes to television and film, the finale of Lost and my husband’s cruel sharing of the end of Toy Story Three coming to mind. I just don’t find crying all that cathartic anymore, what with the raccoon eyes that follow with the accompanying migraine chaser from hell, so I’ve channeled my desire for release into other outlets.
No, not drugs. Reality television and the blog, people, the blog.
I immediately apologized for sobbing all over her pretty Gap t-shirt, and managed to state without a full-fledged gulp accompaniment how much her participation in the program had meant to Justin, and to me. I thanked her for her commitment to him, how she showed up during flu season and finals, in inclement weather and sunny skies. I informed her she would be an inspirational speech therapist, and that I was proud my son had influenced her decision, even if only in some small way.
I shared with her that one of the most difficult things for me to accept about the nature of my son’s disorder was that in the truest sense of the word he doesn’t have friends, is bereft of the companionship that has sustained me through some of the most difficult periods of my life, as well as provided me with some of the most hilarious moments as well. I told her that in her own way she had been Justin’s companion for the better part of four years, and that filling this gaping niche in his life had played an instrumental part in his social growth, while simultaneously filling an aching need for myself as well.
Then I took a deep breath, sniffled one last time, and managed to let her go.
After making her promise to keep in touch I slid behind the wheel of my car, accepted the proffered tissue from my somewhat confused spouse, and carefully began backing out of my microscopic parking spot. Jeff asked me if I was okay, which unleashed a second wave of weeping, as I tried to explain to him what this girl had meant to our son and me, and failed miserably (it’s hard to talk when you’re hiccupping). Eventually I got a grip, engaged my GPS so I could find my way home and not rely on my husband’s incredulous instructions (the fact that we were simply retracing our previous steps means less than nothing to my direction-addled brain), and headed for home.
I glanced back at my boy, strapped carefully into his fortress of a car restraint, rocking out to Stevie Nicks and blissfully unaware that this hug heralded the end of an era. I sent a silent plea to the universe I wouldn’t have to witness him searching for her at SSNY in September, then eased into traffic on the main thoroughfare. I filled my lungs deeply one last time, searching for solace in the comfort of air, and in that moment, finding none.
And this time, I let that be okay.
April 7, 2011
Dearest Picture People,
My name is Kimberlee Rutan McCafferty, and I have been a loyal patron for almost eight years now, a customer who has spanned two states to buy your particular photos. My family’s relationship with your establishment began a few months after the birth of my eldest son in northern Virginia, where I would faithfully schlep him to our local mall at least three or four times a year to capture his cuteness on camera. We’ve since relocated to New Jersey, where I make a longer schlep to take my two sons, both of whom have autism, to your shop. Between Halloween, Christmas, and birthdays, during the last decade my family has frequented Picture People on many, many, many occasions.
Trust me, I could wallpaper an entire room (we’re talking family room, not bath) with the amount of product I’ve purchased from you.
I know this may sound like a nutty obsession on the part of a woman who clearly has her hands full (there was a time I could barely get my first child into a car, much less get him to smile for a photo shoot), but I am a self-professed shutterbug. After my passion for writing (okay, and perhaps scrapbooking, I am THAT cool), I admit I adore photography, and have used up almost every square inch of wall space we possess to project the images of my little boys. Frankly, it’s just one giant photo shoot chez McCafferty.
The truth is there are a multitude of things I could be doing with my children other than running maniacally around a portrait studio as I attempt to make them smile, but I enjoy having those formal photos around the house, and it’s worth the effort to me. Having two children on the autism spectrum has forced me to give up any number of things I took for granted I’d experience when I reproduced (you know, like the eventual return of a full night’s sleep, and a chance at retirement), but having gussied up pictures of my kids is one slice of “normal” I refuse to relinquish.
I’m just that stubborn.
So when I heard from one of my favorite photographers yesterday that not only have you discontinued the practice of emailing these digital memories to customers to peruse at their convenience (a Portrait Club Member perk I adored, since my husband is even pickier than I am), I will share that I did turn my head faintly in the direction of JC Penney’s for a moment. When I was further informed that your store would only be keeping my kids’ photos on file for twenty-four hours now despite my “elite” customer status, I admit I pondered whether my GPS would work indoors to help me find your competitor.
So, I simply have this to say to those in charge. I am one of those annoying people who always says they’re going to write a letter of complaint and never does (the discontinuation of McDonald’s fried apple pie and my desire to abolish “skinny jeans” both come to mind), but today, well, today, I’m venting my wrath in prose. I’m not asking you to light up your studios blue (although I’d appreciate the attempt at added autism awareness, I understand those cerulean filaments might not make for a prime photo opportunity for everyone). I’m not requesting an exception for those of us with children who might not be capable of waiting an hour-and-a half post-shoot to bring home our pictures (hell, I’ve been there when it’s taken thirty minutes just to upload and view our take on a computer screen). Truly, I’m not vying for special treatment.
You’d know it if I was.
I also understand the economy sucks. I completely comprehend the principle of “once they leave the sale is lost”, or whatever far zippier phrase those marketing geniuses have concocted to raise revenue. I get the bottom line here. Despite the furry Easter props, and the admonition to “make special AND unique memories AND have a great day” every time I place a call to your company, the ultimate goal is to make money.
It’s always about money. Sadly, it’s no longer about me.
But I am asking you to consider this. I’ve been at that mall, walked by your store and recognized a customer, then seen her hours later on that same swivel chair with her sobbing infant after I’ve completed half my Christmas shopping and had a manicure. There are plenty of children who do not reside on the autism spectrum who can’t wait around for mommy to bring home their preciousness, “normal” children who risk slipping into a total meltdown that can be heard from the outer limits of the parking lot (trust me, I’ve heard the faint cries as far away as Macy’s). And given that economy I mentioned before, I’m willing to bet any number of those stressed-out moms might actually have jobs they can’t boycott to return the next day and claim those images, particularly within your draconian twenty-four hour limitations.
It was suggested to me I partake of this option. Since we’re usually five minutes from the Apocalypse at my house on any given day, I “politely” declined.
So please, dear Picture People executive-types, kindly consider what I’ve penned. Bring back the opportunity for the “slide show of joy” I can view with my spouse in the relative comfort of my bedroom. Have respect for the fact that our (and I mean the global, Kumbayah, “our”) children might not tolerate the wait/screaming babies/overwhelming crowds/PMS-state mothers every single time they mug for the camera. Take pity on families trying to forge memories of what their kids looked like in this crazy world, and grant them some options.
Give us back the gift of time.
Because I’ll tell you, there are days in my household where the random sight of those grinning cherubs is the only thing saving my sanity, as I deal with the sometimes tragic, and often profoundly irritating consequences of living with autism. Honestly, just glancing at their photos, in those silver frames I’ll never get around to polishing, simply makes me happy. So come on Picture People, have a heart, and make a Jersey girl smile.
I’ll even let you capture it on film.
January 5, 2011
We’re going on seventy-two hours of unprepared “imprisonment” (our forecaster said three to six inches of snow, not thirty-six inches of snow), and the natives are beginning to get restless. We’ve run through every new Christmas toy in the house, every old, abandoned plaything in the realm, and Zach has filled-in the pages of at least two dozen coloring books in his increasing boredom. Jeff and I spent half an hour getting them into snow gear for the ten minutes they played outside (Justin rejected his boots and gloves for sneakers and bare hands and I conceded, another Mother-of-the-Year moment brought to you by the makers of Cabin Fever), and after icicles began to form on both of my sons’ faces we returned to the relative warmth of our home. I’ve organized three closets and repaired four photo albums that Justin dismantled in March (spring cleaning and OCD-forced chores not being my forte), and I’ve been eying the Tupperware drawer for a day now.
I really, really, really need to get out.
We went through something similar last Christmas, but the circumstances were decidedly worse then. Last year mother nature deposited enough snow that we lost the last three school days before vacation was supposed to begin, which meant that Justin was home, with no camp or school to attend, for seventeen consecutive days (but who was counting?). That first week he had no new surprises with which to entertain him, and my days were punctuated by him dragging me frequently to the front door with shoes in hand, and his subsequent whine and tantrum when told “no, mean mommy can’t take you out during a blizzard, Justin”. I saw such maturity in him during the course of this particular storm, was thrilled to see him simply drop his shoes on the ground when I showed him the snow banks he could see through the sliver of unfrosted glass at our front door. He really “got it” this year, understood his parents weren’t torturing him on purpose, and found ways to amuse himself that didn’t require the constant pull of one of my body parts.
How’s that for looking at the bright side?
Eventually however, even Zach tired of his holiday loot and forays into imaginative play (and grateful as I am for it, mommy was tired too), and I could see him searching for something, anything new, to occupy his mind. After a few dozen stories (and even more pretzels) he finally sidled up to me, looked me in the eye, and made his latest demand.
“Mommy, you be Zachary, and I’ll be Mommy-Kim”.
I thought to myself, this should be interesting. Guess I’ll find out if he hears those frequently muttered curse words after all.
“Okay Mommy”, I answer in my approximation of a little-boy voice, “Nemo just told me he’s REALLY thirsty, and I need to go potty NOW!” (when your potty-trained pre-schooler starts to backslide on his bathroom regime, is it really so bad to tell him his favorite fish will die of thirst if he doesn’t pee in the proper receptacle? I think not).
Zach responds by grabbing my hand and whisking me to the living room coffee table (?!). Within seconds I gloriously save his finned friend and half of the Atlantic Ocean with my pretend stream while my son yells encouragements of “Yippee! Bravo!”, and my favorite, “Zachy, you saved Nemo’s LIFE!”.
Yes, I’ll do anything to stop buying diapers.
Over the next twenty minutes I learned I’m a nicer mother than I thought, although my terms of endearment are rather nauseating (I’ve got to come up with something better than “sweetpea” or “honeypie” sometime soon). I made my almost-four-year-old feed, bathe and dress me, tasks he undertook with unbridled joy in a sing-song falsetto voice (I really need to take a look at that too). I repeatedly commanded him to “HUG ME!”, to the point I swear I saw the flash of an eye roll as he wrapped his arms around me and said in a slightly exasperated tone “Zachy, you’re alright, no more crying”. An attempt to solicit two “Grandma brownies” post fake-lunch was met with a fairly patronizing remonstration of “no sweetie, your belly can only hold one at a time”, and I was flatly denied the right to see The Polar Express in its entirety. I worked that little bugger to the bone until the “real” bath/book/bed hour approached, at which time it was clear that role reversal was over, and sleep was an undesirable future activity.
Well, to clarify, just for him.
As Jeff and I slipped him into the crib he will soon outgrow, we slid briefly back into character as we said our goodnights. Zachy reminded me “mommies don’t let monsters into the house”, and I told him to “sleep tight and avoid those bedbugs”, an issue that’s taken on a whole new meaning to anyone living in the tri-state area. Play-acting was over, it turns out I don’t yell as much as I think I do, and apparently my son is pretty happy with his lot in life. I need to remind myself sometimes, perhaps many times, that perfect isn’t required here, not even close. Justin’s happy. Zach is happy. Here, within the comfort of our close-knit, and this week slightly claustrophobic world, everyone is doing their best. It will have to be good enough.
And at least for today, it is.
December 31, 2010
We made a gingerbread house today, my youngest and me. Not the fancy version mind you, with its cinnamon-spiced cookie walls and sticky-sweet icing for snow, but the felt version, as I have yet to figure out how to create an edible construct that’s gluten and casein-free. The form doesn’t seem to matter to Zach however, as he seems content just to forge this linen building with craft glue and discretely adhered masking tape. He is simply happy to sit at our designated table with his mommy, and design his own.
I am thrilled to be here with him as well, as this is the first “Christmas house” we have built together, and the added bonus is it conjures up the requisite images of festive architecture from my childhood past, pleasant in their remembrance. As I sit with him and attempt to gain better purchase on the tiny chair I am well aware of the enormity of this gift, the ability to carry on a tradition with my child, one who is eager and willing to perform it with me, one who miraculously was able to request its creation.
It’s the last month of the year, and as always, just like the commencement of the school year, it’s a time of reflection for me. I consider where we’ve been and where we now reside as I help Zachary fabricate his house, watch him carefully separate out the pieces of his one-dimensional art form with such care, and manipulate the tiny forms with such ease. He desires to begin at the top of his home and work his way down, and as I’ve never been one to insist on coloring in the lines we alter our blueprint a little, an act we’ve committed time and time again in our tiny family of four.
He begins with the roof, which he tells me firmly we require because “it will keep everyone warm and cozy”. As I contemplate how he’s incorporated the latter adjective into his lexicon of words I am simultaneously reminded of the outpouring of care and compassion we’ve received over the years, the small and grand acts of largesse, and the kind words both spoken and written to encourage our clan in times of conflict. These acts have blanketed us, permitted this family to retain the heat, the fire necessary to forge through the most searingly difficult times. We could not have built our own home without them.
Once the roof is safely adhered Zach moves onto the windows, neatly punching through the cloth panes of glass to afford us a glimpse of the other side, allowing us to widen our view. I recall how watching my youngest son’s language expand, and my oldest son’s increasing desire for social interaction, have both enabled me to envision a different world for my children this year. We now inhabit a home in which the future may hold more than just fleeting glimpses of a “normal” childhood, one in which both of them may actually one day possess a true friend. I am so grateful for that expanded vista, for the possibilities inherent in those translucent frames.
Finally, Zach addresses the foundation, shoring up the edges with his tiny fingers immersed in solvent, asking me if his careful ministrations are correct. I smile and tell him his house is lovely, as in its own way, is our own. Our foundation has also been conceived in patience, moored in consistency, cemented in love. It’s not seamless, and there will always be cracks. But it will continue to stand.
It will always stand.
And my wish for all of you in every year to come, is that your own house, no matter how it’s constructed or what form it takes, will continue to stand, wind and weather-battered, as magnificently strong as ours.
I’d like to take just a quick moment to extend my immense gratitude to all of my readers this year. I am so appreciative of the praise as well as the constructive criticism, the time taken both to read my missives and to comment on them, and your continued loyalty as I’ve endeavored to find my voice. Thank you to everyone, and to close, here are the McCafferty photos that won a space on our Christmas card this year:
He’d wear it every day if he could…
The best Christmas shot of 182 taken (no exaggeration)…
Clearly he got the “adventure” gene
There are no words for this one…
Happy New Year to all!
December 28, 2010
This week’s Gratitude Attitude goes to both of our families, for making Christmas Eve and Christmas Day so much fun for all of us, especially the boys. Thanks for all the extra effort and support!
December 26, 2010
An elf with rock star aspirations, more “naughty than nice” letters, and the probable kidnapping of the jolly old star of the show. Alas, I’m not alluding to the holiday episode of Jersey Shore, because the latter part would be a welcome improvement in my eyes. No, I’m simply referring to the lovely holiday play, Chasing Tinsel, that Justin and I were privileged to view this weekend at his school (and armed with our new behavior management techniques from the fabulous “Miss M” as well as a few snacks, we almost made it to intermission).
After a brief tussle upon initially entering the auditorium (Justin was convinced the brightly wrapped prop-presents were indeed for him), we quickly settled into one of the front row seats, and were immediately greeted by his teacher. I’ve been certain that Justin loves his new school, mostly from the way he bounds to the bus in the morning and practically launches himself into my arms from the vehicle at the end of the day, but if I needed reassurance, I got it. Justin heard her say his name, did a double-take when he figured out who she was, and treated us both to the view of his joyful grin overtaking his entire face.
My boy truly gets who loves him.
After a brief sojourn to the fifties-style girls’potty and a complete rejection of the salty and sweet for-purchase snacks in the back of the room (the snubbing of which made me break out in a cold sweat as I wondered if his “goody bag” indeed contained his favorite pretzels), we quickly returned to our seats. We retained our Christmas cheer after I gratefully located Justin’s “twists” and offered him a juice box, and he smiled in recognition as I showed him the timer with its wealth of red. We settled into our seats to be regaled with tales of greedy children and icon abductions, and I noticed that Justin, particularly during the singing scenes, was hanging raptly onto their every word. He even grinned at me periodically and checked to see if his teacher was still in attendance, and we soon made it past the thirty-minute-marker that usually symbolizes his impending egress. He was far more engaged than when I take him to 3-D movies, even paying attention to scenes not involving pretty, talented, teen-aged elves.
Heck, I may have to rethink the insanity of braving Broadway with him.
We didn’t quite make it to the halfway point, although Justin sat dutifully for TEN EXTRA MINUTES after he signaled his desire to leave and was confronted with our coveted time-piece. Since we were within spitting distance of his teacher and one of the directors of the school, I couldn’t have been more proud of his patience. He saw the timer, glanced at me and smiled, and slid back into his seat to take in the next scene. Since he was out of pretzels and juice by then his only sensory option was visual, and he seemed perfectly happy just to wait until I released him. There was not one complaint, not one cry, not even the tiniest of protests.
He made us look good.
All too quickly the clock wended its way to white, and I honored our contract, and gathered our stuff to leave. We were briefly waylaid by the executive director of the school who was kind enough to tell us we didn’t need to leave if our only reason for departure was a “noise issue”, and I happily responded that no, thank you, he was just done, and we were ready to go. I settled him into his harness and we headed for Wegman’s (of COURSE I was going to get some food out of this), and as my faithful GPS helped me navigate the labyrinth of circles that is the heart of New Jersey I had a few minutes to reflect on why Justin is so happy, and why I am in such a state of peace. There are multiple reasons, but I’ve become aware of one in particular that has come to have great meaning to me.
We are truly part of a community.
I’ve mentioned before that I’ve been blessed with family, good friends, amazing co-workers, a husband who does our food shopping (!) and of course my boys, but I can’t say I’ve truly felt part of any community before. I’m a white girl of middle-class origins, a veritable Western European mutt. I’ve wondered if entire cathedrals would crumble in despair as I darkened their doors due to my impatience with organized religion, and I was perhaps the worse sorority sister on record. The most distinct, unique thing about me is perhaps my Huguenot ancestry, which almost landed me a full scholarship at a hoity-toity women’s college (when it required an emphasis on economics I wisely declined, deciding I actually wanted to obtain a degree one day). I’ve felt loved in my life, included, but not really unique, not a part of any particular cohort.
Ours is a community composed of eager volunteers in our local autism organization, men and woman who strive so hard to provide the training of police officers and teachers, as well as those blessed opportunities for fun that all families with disabled children need.
It is comprised of the online bloggers I’ve come to know, both for their eloquent missives and our personal interchanges, sometimes poignant, often hilarious.
It encompasses that fleeting moment of eye contact between two parents at a pediatrician’s office, imparting instant understanding, compassion, and often humor of a shared and harrowing situation.
Our community includes my sons’ schools, where teaching my boys seems to be a “calling”, not just a job, for all the faculty involved.
It’s not a community I would have ever thought I’d be a card-carrying member of, and certainly not one I would have chosen for myself and my family years ago. Its membership comes with many burdens and obstacles, and often I’ve found its entirety diminished to a circle of four, as our family has simply tried to make it through a day.
But our horizons are broader now, our boundaries have extended to embrace both people I’ve actually met, and those whose presence might never physically encounter mine. It is a warm, accepting place, and I am so grateful to burrow there, to have found its grace.
And I hope for all of you still searching for yours, in whatever form your sanctuary takes, that you find its confines soon.
December 21, 2010
This past Sunday our local Elks Club held their annual holiday bash for children and adults with disabilities, and since I’d been told by my friends that it was worth schlepping to, this year I finally signed the kids up for it. The past few events I had avoided in part because they coincided with Zach’s naptime, and since my youngest is a phenomenal sleeper there is very little in the world that could get me to keep him out of the house at that point of the day (believe me, we’re talking good dark chocolate AND wine would be required). I’d also decided to forego taking Justin, because frankly the thought of killing two hours in between chicken nuggets and Santa seemed especially grueling. There are only so many videos one autistic child can watch over and over after all.
This year, however, Zach has begun (much to my dismay) to relinquish that gourgeous hour of naptime mid-day, and now I’m also armed with the timer that will hopefully continue to extend my oldest’s son’s willingness to stay a little longer than five seconds outside of our home. Being the crazy, spontaneous fun-loving gal that I am, I threw caution to the wind and signed them both up, figuring my husband and I would do shifts. I assumed I would take Justin first and that he’d last long enough to eat lunch there, and then perhaps I could cajole him to stay for a little while after that. I’d heard that practically the entire special needs community attends, that maybe he’d get to see a few of his classmates from last year, and mommy might also get to talk to adults for a little while. Since I’m not a big fan of the nugget, socialization could be my reward.
The gig started at noon and we arrived fashionably late at 12:15, and as I searched with one eye for a place to sit and the other for anyone I knew, I hoped the food would be served relatively quickly. We actually found seats at the door, and Justin settled in with a juice and video he hadn’t seen in an eternity, making certain to slide every box of candy canes on the round metal table far out of his personal space. It didn’t look like lunch was being served any time soon, so I corralled one of the friendlier looking Elks and asked him to check on meal times in the kitchen for me. He came back with the grim news that they were a bit delayed and it would probably be another twenty minutes, and I thanked him and quickly counted out how many more Pixar movies I’d sequestered within the goody bag. So far, this wasn’t looking good.
I had a feeling that even with my trusty timer we weren’t long for this party, so if I wanted to get a feel for the event I’d better look around now, and I did. There were elves in full regalia throughout the place, and enough glittering décor to make this large barren room seem festive. A DJ was playing Christmas favorites to a variety of children and adults who were gleefully rocking out to Jingle Bells and other assorted tunes, and everyone seemed to fit the definition of merry. I looked back to the entrance in time to see my friend and her husband walk in with their two boys who are also on the autism spectrum, and I quickly motioned her over so she could claim the four seats I’d managed to save for her and her family.
Her sons threw off their coats and hats and made a beeline for the front of the room with her husband in hot pursuit, and I knew we only had a few moments together before she had to go grab a child. I looked down to see how Justin was doing, and heard the sucking sound of the last remnants of a juice box being consumed, and realized he was already watching the last (and twelfth) movie I’d brought with us. I returned to our semi-interrupted dialogue, then felt the tug on my sleeve coupled with the shove of the goody bag to my hand that always signifies it’s time to depart. Since I’d already shown him the red timer twice by now and its slight arm had since drifted into white territory, I knew the gig was up.
I looked at my friend and said “Tara, we’re not even going to make it to lunch”, and as I glanced around the room at all the other children reveling in the festivities, some clearly also on the spectrum like my son, I momentarily felt such a sense of defeat. There’s going to be food he likes, and a present. He’s in a Christmas outfit, it’s clean, and everything matches. Can’t he just suck it up for twenty more minutes?
Once again I felt that insistent pull on my sleeve, and so I turned to my oldest and told him somewhat impatiently to “wait”, then swiveled back to my friend. I looked at her and said “We’re leaving, I’ll be back with Zach”, and she returned my gaze, held it for a moment, and said “I’m sorry”. Just two simple words, and a look that said “I get it, we’re both in the same leaky boat”. The entire exchange, both verbal and visual, took mere seconds.
But for me, it was enough.
I smiled back at her and said “thanks”, and turned back to my clearly impatient child and told him we were about to go. With a “see you later!” trailing behind her my friend sprinted to the front of the room to claim a kid, and I swung cluttered purse and overstuffed, oversized goody bag onto my shoulder with one hand, and claimed my own child with the other. I felt my malaise disappear, in part because I’d have a shot at fun with my youngest later, and in part because we’ve made so much progress with Justin lately at other events. I had to remind myself to be realistic. He’s a boy. He’s seven. He’s autistic. And regardless of the latter situation, like any other kid, he’s just not going to like everything.
And we made our way out of the room on a mission to McDonald’s, past regretful elves who perked up when I told them the other kid would be back later, him gripping his cherished DVD tightly, his mother responding with a grip of her own to his free hand. We were moving on, much as we’d done in the past, much as despite our new arsenal of behavioral techniques I’d be certain we’d do in the future as well.
And this time, it truly was okay.
December 9, 2010
We made it to one of our local bowling alleys this week with time to spare (remember, I only promised to avoid the “striking out” jokes, so no complaints), with Justin simply thrilled to be going anywhere, even if he was confused as to why “Miss M” was accompanying us. I was in the throes of my thrice yearly bout of bronchitis (I am fond of saying I will one day drown in my own fluids), so was particularly grateful to have help accompany me on this outing. I wasn’t really up to dragging my sixty-plus pound boy around a bowling alley, and I was certain part of this adventure would become physical. Even six months of P90X is not adequate preparation when confronted with my child’s desire to leave the premises.
After a short drive in which I managed neither to get lost nor cut off by any of my Jersey comrades, we finally pulled into the almost vacant parking lot. “Miss M” commented on the fact that we’d probably have the place to ourselves, so no matter how Justin reacted to our plan, it wouldn’t matter. I gently assured her that even if it was a full house and it took both of us sitting on him to make him stay longer than ten minutes, I was game. I’ve long since gotten past the “staring” that occasionally occurs when we’re out in public, generally return the looks with a smile I find more times than not is eventually mirrored. I feel there is so much hanging in the balance here, as I’d like to continue doing things together as a family outside of our home for more than half an hour, and I could care less who witnesses what we have to do to achieve this goal.
Hell, whether or not you have a child with any type of disability, try to give yourself the present of not giving a damn what other people think. It’s truly the gift that keeps on giving.
“Miss M” and I break into a run as Justin briefly slips my grasp in the parking lot and rushes toward the door, and we smile at each other in the knowledge that at least Justin is initially eager to try this activity, knowing that attitude will help this scenario immeasurably. After a brief skirmish in which we convince my eldest child that he does indeed have to wear his fancy bowling shoes, we are soon set up in our very own bumpered lane, and outfitted with a ball commensurate with Justin’s hand size and weight. We have come prepared with a timer and rewards, snacks, videos, and a DVD player that (in theory) should be extremely reinforcing to him seeing as how they’ve been withheld for days (a time period which seemed to his mother to last for decades). I am confident that after a mere few frames, no matter how successfully conducted, my boy will be eager to raid the vending machines and leave. Hopefully, these enticing items will encourage him to stay and finish one entire game of bowling without a full-out tantrum.
“Miss M” drops our gear and digs right in, taking Justin firmly by the hand and leading him to his waiting purple sphere, encouraging him to put his entire body into the two-handed push that sends his ball spiraling on its intended collision course. I notice my boy is smiling, has perhaps recalled his one prior attempt at this game, and is at this moment happily enmeshed in the semi-novelty of the experience. He watches quizzically as his mother and this relative stranger dance up and down gleefully when he knocks out three pins, and is fairly compliant when our BCBA du jour reroutes him from an attempted escape and returns him to the machine preparing to regurgitate his equipment. We’re only seven minutes in. I figure I have about ten left before this turns ugly.
As I thought, I am correct.
Three frames in (one more than I predicted, perhaps I’ve made some headway with him this fall after all), his majesty is clearly finished with this activity. He grabs my hand while simultaneously attempting to balance on one foot and shed his velcroed footwear, then heads for the exit, grabbing his trusty “goody bag” on the way to freedom. Out of the corner of my eye I see “Miss M” swoop in, grab my child and bag and redeposit him and each item in their prior positions, then place my son’s extremely reluctant hands back on his waiting orb to attempt frame four.
This time after releasing his ball to its destiny our BCBA diverts him back to the table with its promise of food and film, and Justin is momentarily diverted from his desire to leave (although OF COURSE his favorite DVD decides to mutiny on me). “Miss M” offers him the snack he’d usually trample me to gain access to, which of course he refuses, and I’m guessing it’s because he’s already seen the snack machines with their seductive allure of virgin carbohydrate territory. Instead, he’s somewhat placated by a second tier movie, and our autism expert also makes sure he sees the timer with its red block of unspent minutes, ascertains that Justin marks its passage as it winnows down to white.
When we reach zero, we three move forward to another frame, and continue this dance until we make it through to ten. “Miss M” is unfailingly cheerful until the bitter end, through my son’s verbal protests (just because he can’t talk does NOT mean he can’t show us how pissed he is), his artful escape attempts (he made one move any NBA player would be proud to adopt), and his all-around general crankiness. At the conclusion of our game she remains full of energy, positive in the progress we made as we reward our boy with his coveted assault on the snack machines.
I, while mentally encouraged, find my body silently begging for Nyquil.
After Justin inhales his snacks (yes, we treated him to two, he lasted forty-five minutes somewhere outside of his home, it’s his equivalent of a parade), we show him the colorless timer once more, tell him it’s time to leave, and escort him to the door. Through my congested haze I’m hopeful on the short trip home, willing to entertain the thought that perhaps we can teach my boy to remain places for longer times, condition him to enjoy more events. Achieving this goal is crucial to me, the same way encouraging him to sleep through the night (Amen!), ride in a car without protest, and use his communicative device rather than his fingernails to get his needs met, have all been of significant importance in the past. With the holidays looming I know we’ll have ample opportunity to try out our behavior plan, particularly at Christmas when we invade my sister-in-law’s home and take turns monitoring Justin. Perhaps this year we’ll make it through the appetizers (and only one glass of wine for mommy), and actually enjoy ourselves. I’ll keep you informed as to how it goes.
I’m just glad that prior to giving birth, I didn’t know that having fun with my kid would be so much work.
November 11, 2010
Don’t get me wrong. I’m actually rather grateful to be here, even though this developmental phase includes the word “no” in every sentence, the declaration of fear before every trip to the potty that I’ve come to believe is completely bogus, and of course, the screaming every time Justin even looks in the direction of a toy with which Zach is playing. Just to be clear, I in no way think that these behaviors are simply a manifestation of my youngest son’s type of autism, as none of these shenanigans are new to me. I had my kids late, got to watch my friends’ children make their way into the world, and on a few occasions felt they were a better deterrent to childbearing than my birth control pill. Over the years I’ve frankly come to believe that any child under the age of six is inherently a writhing bundle of “me, me, me”, just waiting to be tamed by his or her parents.
And now, at long last, it’s my turn.
I’ve picked up a number of disciplinary techniques over the years, some from my classroom days, many from studying how my friends dealt with their progeny’s transgressions. Since they’ve all turned out beautifully so far, I feel emulating their moves is a safe bet. I’ve cheered them on in their usage of “time-out”, helped a few construct fairly creative behavioral plans, and supported them when all else failed in their attempts at simple good old-fashioned punishment. I admit over the years I’ve been envious of their usage of “if-then” as a bargaining tool, a device I’ve been unable to put into play with Justin as his thinking is simply too concrete. But as Zachary has aged I’ve wondered how consequences would come into play with him, and have recently discovered the most wonderful bribe AND deterrent to undesirable behavior ever conceived.
His name is Santa.
I know. I have to be careful not to invoke his high holiness on too many occasions, as the threat of him only leaving presents for Justin if employed too often will eventually render him irrelevant. My husband and I reminded each other this past weekend to show restraint, and only “use” him when we’re really at the end of our ropes, when our battery of behavioral techniques has simply worn out. I promise Santa, we will be gentle.
But I will say this. That jolly old soul who needs to lighten up on the carbs is a powerful tool, and I’m going to be missing him greatly come January. Santa prevented Zachary from running around our house for the HUNDREDTH time yesterday in order to escape the dreaded potty, that same receptacle in which he’s been successfully and proudly peeing in for several consecutive weeks. The bearded one reminded my youngest son that he could indeed share his toys with his older brother and live, particularly since they were originally Justin’s in the first place. Hell, Old Saint Nick even got his lordship to put a string bean up to his lips, and although it was ultimately rejected, it was a start. Santa’s given me hope that eventually all of my son’s fruits and vegetables won’t ultimately come from a plastic bottle of V8.
So in case you’re feeling a bit “humbugish” this season, what with the plight of our economy and the equally depressing realization that you are no longer justified in eating your child’s “rejected” Halloween candy, I simply want to leave you with this thought, and hope it renews your faith a tiny bit in this time of year, if even for a moment.
Santa, my friends, really is magic.