January 6, 2013

Cleaning House

Posted in Life's Little Moments, My Take on Autism tagged , , , , , , , , at 3:26 pm by autismmommytherapist

May 2012 070

This past fall I took a bit of a hiatus from writing as much as I usually do, and instead took a good long look at the state of my house. Topically, it wasn’t in such terrible disarray (that is if you ignored my dining room and kitchen tables, the two Bermuda triangles of my home where papers seem both to congregate and disappear with impunity). On the surface things didn’t look too bad, but really, I knew better.

I’ve been spending most of my free time the last six years writing a book (shameless self-promotion to come), contributing to magazines, concocting my play, and of course penning this blog, and have wantonly ignored the shelves and cupboards of my helpless home as a result. This fall I knew it was time for a colossal “spring cleaning” when my youngest got into one of my bureau drawers and asked if he could color one of Justin’s Christening cards.

I am a bad, bad housewife.

I am also however a girl who loves a good project, and I dove into reclaiming the inner sanctum of my abode with my usual enthusiasm, and found it all quite cathartic. A sushi-making kit from 2002? Disgusting, and gone. NJ Monthly’s Best Eats from 2006?  History. Pants I haven’t worn for multiple unpleasant reasons since the first Bush administration?  Donated. My kids’ former Halloween costumes?  Safely ensconced in their closets.

I am not that heartless.

I saved my bedroom for last, in part because I knew this would be the biggest job, and in part because of potential minefields awaiting me. Until a month ago I had filed and saved perhaps every single piece of paper documenting both boys’ journies with autism, all categorized neatly in manila folders, and organized in my own particular fashion that worked for me.

To be fair to my hoarding predilection these documents were incredibly helpful when I was writing my book, as my memory was pretty shot by the time we left Virginia, and reclaiming my New Jersey territory didn’t seem to jostle it. I used a number of these papers to help me remember those early days of Justin’s pre-diagnosis, and of course everything that happened afterwards. I even used some of them to help construct the “Zachary section”, even though my writing pretty much occurred just after the events at hand.

It sucks getting old.

The truth is the information was invaluable, but I hadn’t looked at those files before my “purge urge” last month, nor have I missed them since. As sentimental as I am, I do not need to retain for posterity every single art project my children have created since birth. Potty training how-to’s can go to the landfill (hallelujah chorus twice for that one). Gluten/casein-free recipes I downloaded from the internet can follow suit (in part because they usually suck, and in part because if I haven’t made them in five years, it’s probably safe to assume it’s never going to happen). Discarding these files was easy, as I employed the McCafferty “year dictate”- that is, if I haven’t opened it since last Halloween, to the rubbish it must go.

And for the most part (except for my friends’ birthday cards, which I am saving for my nineties as a future pick-me-up), I remained faithful to the rule.

Eventually I got to the core folders, the ones documenting Justin’s progress through Early Intervention and school in two different states, and I took a moment to peruse a few of them, all literally as thick as a hardcover George R.R. Martin. Encompassed in manila were all of his progress reports, assessments, and goals for the future. I let my eyes wander down yellow pages formally part of an often official triplicate, checking dates which made me recall where I’d been both emotionally and physically when they’d been filled out.

Some of Justin’s targets revolved around socialization, primarily that he would one day have a friend. Many of the papers outlined strategies to tear him away from his perseverative pursuits, all hoping that he would one day engage in more “typical play” than he did as a toddler. Most of the goals centered around communication, either encouraging him to expand his sign repertoire, or soliciting those coveted vowels and consonants that almost completely disappeared after his first birthday. All were designed to change the core of his behavior, some of the essence of who he is.

I admit, even after eight years of knowing definitively that my child has autism, I had to put those files down for a breather. Chocolate helped.

And it hit me, as I sat surrounded by flimsy cardboard and discarded candy wrappers, that the focus of my goals for Justin have shifted radically over the last decade. The dreams I had for the infant who made me a mom nine years ago are indelibly different from those I long for now.

Most likely Justin will never attend college, have a best friend, or have a conversation with me that doesn’t include his iPad. Those realities still make me sad at times, but I often wonder for whom that sorrow applies. Justin is thrilled with his life. Frankly, my husband and I reflect frequently upon the fact that he is often the happiest member of this household. I have the gift, and it is a gift in the world of autism, of knowing that if I can keep him safe, engaged, and challenged throughout his eighty years, his will be a fulfilled and productive life. At the end of the day, if through luck and hard work I can procure those realities for my son, his will remain a joyful soul. I no longer want to change who he is.

I simply want to enhance his life as much as possible.

I gathered up the files surrounding me, and unceremoniously dumped them into a waiting garbage bag. I no longer have a need to return to the past. It’s time to focus on the future, on acquiring that safe haven for my firstborn son that includes a job he’ll enjoy, and hopefully access to those horses he adores. It’s time to recognize that although we haven’t reached those goals forged so long ago on paper, we’ve been successful with Justin all the same. It’s time to simply revel in him.

It’s time to purge.

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November 23, 2012

Read-aloud

Posted in Fun Stuff, Life's Little Moments, My Take on Autism tagged , , , , , , at 3:06 pm by autismmommytherapist

“You’re here, I didn’t even see you!” Zach yells across the room, as I enter the colorful and organized domain of my son’s kindergarten classroom. I smile and reply “yes, Zach, I made it”, as if there’s any other place I would be on the day I get to read a story to my son and his classmates. Since it’s late October I even have the bonus of being able to wear Halloween attire (just a shirt, I’m not going completely overboard), and of course our reading fare is spooky-themed. I tuck my purse into the corner and watch as my boy’s wonderful kindergarten teacher settles twentysomething whirling dervishes on the large “morning circle” rug, then take my seat with material in hand.

I immediately have flashbacks to my teaching days (the good kind).

Zach is told he may sit next to me in my “seat of honor” perch, and I can see  as he slides into his chair that he’s almost vibrating out of his little body with excitement. Before I settle him down a bit I make a mental note to remember this moment when he’s fourteen, and I transform into just his ‘stupid mom’. I begin speaking to the class, although the little bugger has already stolen my thunder a bit by telling all of his friends that I used to be a teacher (although once a teacher, always a teacher).

I forge on ahead anyway with my introductory spiel, and I watch as at least half the children’s eyes grow wide at my confession, particularly when I share that my students’ ages were in the double digits. They listen raptly, and I realize I’ve come to have a greater appreciation for the younger set, one I truly only developed after having my own children.

My rule about only instructing kids who are old enough to get my jokes remains. I still have my limits.

I begin reading “Room on the Broom”, one of Zach’s favorites that he knows inside and out, and I can literally see my son struggle to contain his emotions, he is so enthusiastic about my presence. I remind myself that this is still a vast improvement from his pre-school days, where as soon as he spotted me in any audience he’d well up with tears, then cry unabashedly when I left (a situation usually rectified as soon as he had a snack).

Today however this experience for him is just pure, unadulterated joy, with his desire to merge his most important worlds of parents and school just slightly overwhelming him. In an effort to help calm him a bit I quickly request permission to allow him to help me read our ghostly literature, and thankfully his teacher complies. And after at least a dozen interruptions, several “Boos!” and multiple unauthorized trips to the water fountain, we eventually conclude story time.

He’s still thrilled. I am exhausted. I remind myself that this is what I get for having him at forty.

My “fifteen minutes of fame” is over, but I’m thrilled to have been invited to his classroom, to win a window into the world that is my son’s place in a mainstream classroom. I thank the children and gather my things to make a quick exit, my boy blowing kisses at me as I leave, while the professionals behind him help him resettle with his peers. He is clearly thriving there, and I’m so grateful to his educators for truly “getting” Zach, for liking and accepting him the way he is, while simultaneously teaching him how to rein in his exuberance just enough to function appropriately in class.

Truly, this is the crux of all my angst and worries about him. I ponder daily how to encourage him to be exactly who he is, yet help him channel his energies so he can have the things he covets- positive attention, true inclusion, and friends. He stands out a bit, particularly with that energy level that just won’t quit (if only I could siphon some of that off for me), but it’s clear this facet of his nature is viewed as just a part of him. My boy is seen as a whole person, not broken, not in need of being fixed. It’s obvious he’s in a safe place, one where he can be free to be himself, yet learn the ways of the world without those strictures dissipating his true essence. Zach has lucked into a classroom where differences are not just tolerated, but celebrated. It’s clear he’s viewed as perfect the way he is.

And I think to myself for the millionth time how wonderful it would be if we all treated each another that way, if one day the world would just catch up to kindergarten.

October 13, 2012

Happy Days

Posted in Life's Little Moments, My Take on Autism tagged , , , at 11:13 am by autismmommytherapist

“What do you want Justin?” I asked my eldest as he takes my hand and pulls me off my comfy couch, where I am ensconced in a warm, soft blanket fresh out of the drier, happily reading Halloween books to my youngest son. He smiles, then leads me toward the bathroom with a sense of urgency. I note that the door is locked from the outside, thwarting both his entrance and his penchant for using the small stool inside to unlock the adjacent garage door, where a veritable mecca of toys resides.

Instead of freeing the hook from its mooring I return with child in tow to the coffee table, and gesture toward his iPad. Justin looks irritated but complies, quickly pressing the buttons that will signal his desire to use the bathroom, an act which is also coupled with a look of irritation directed toward his mother. I end the torture, and grant him access. I then step back and “supervise”, since my nine-year-old has mostly mastered toilet etiquette, and one of my most important goals for him is that he become as independent as possible.

I cross the threshold only when it becomes apparent that Justin would prefer to skip the hand-washing portion of this exercise, so I gently prompt him by pointing to the sink, gesturing from my perch on the wooden seat that has survived two children. He complies, as he almost always does now with our demands, and I fully expect him to bound out of the bathroom and head back to the DVD player which has captured his interest at the moment. Instead he regards me intently, and smiles as he places his hand on my arm, staring at me to make sure I’m paying attention.

Trust me, I am. I wouldn’t miss that look for the world.

I figure that will be it, that the siren song of  ET, his favorite at the moment (and eternally one of mine) will call to him, but I see him hesistate, watch him come to a decision in his mind. Rather than rescuing his errant extraterrestrial from the hands of his little brother he instead slides onto my lap, throws the full weight of his embrace around me, and turns his cheek to me.

His arms squeeze with full strength once, twice, three times, then he settles into our embrace both quiet and still, a phenomenon that occurs rarely in our home. I kiss him lightly on his cheek and hug him back, and for the millionth time in the past eight years since his diagnosis day I pose this question to the universe at large.

For my beautiful, intellingent, loving son, are we doing enough?

I want to be clear here that this query does not stem from any sense of guilt. I am well aware of what my husband and I, and perhaps to some extent Zachary, have sacrificed to get Justin to this place of contentment.

Justin attends a school that is the perfect fit for him, is instructed by teachers commited to extracting his best performance every single day. My boy has family he sees frequently, and two outside therapists whom he both adores and works diligently to please. Most of the time (and this is all any parent can ever ask for), he even gets along with his little brother.

Perhaps, most importantly, he has a steady routine he can count on, a litany of meals, activities and excursions which comprise a good day for him. For the most part Justin’s is a happy soul, a hard-won outcome for which his father and I are eternally grateful.

After having survived the “spring of Justin’s discontent” this year, his parents are particularly appreciative of his contented state.

On the surface, I know Justin’s life looks quite simple. Frankly as the years have progressed he’s shown less and less interest in staple outings which he used to love, and our family has had to adjust to the fact that often our son’s preferred reinforcement is truly just to remain in the house. His “life buffet” as I like to call it is rather limited by anyone’s standards. The truth is though that he’s happy, and as so often is the case, the only one who has to adjust to anything is me.

And again, for the millionth time, I remind myself that my idea of what consists of a full and productive existence for myself, bears no weight in regards to he life of my son.

Soon I sense a subtle shift, a lessoning of the force of his embrace, a leaning toward egress. Justin squeezes my torso one last time, gifts me with one last gaze, and bounds out of the bathroom to reclaim his treasure from reluctant hands. I am left for only a moment with my thoughts because I hear the whine of protest from both of my boys, and know it’s time to intercede. I walk into the family room and am almost bowled over by my bigger son running joyfully with DVD in hand, and I know that in this instance there will be only one child to placate.

I remind Zachary of the five million other books, toys, and art projects that remain for him, and soon we resume our spots on the couch as if nothing had happened. Zach snuggles into me, and together we siphon off the last remnants of warmth from comforting covers, and immerse myself in the latest adventures of Diego and Halloween bats.

And as I listen to Justin’s exclamations from afar, I realize for once I am content too.

November 13, 2011

Happy Halloqueen Part Two

Posted in Life's Little Moments tagged , , at 6:04 pm by autismmommytherapist

I know, all of you have been waiting with breathless anticipation for my follow-up post to what I might redub “Halloween Part One:  Kim Really Likes Her Neighbors”, and here it is. If you read last year’s post Happy Halloqueen (and if by some chance you haven’t, here it is, life’s full of second chances), you’re already aware that I’m somewhat obsessed by the holiday, and prefer to extend the celebration for an entire month. Both kids are doing so well we were able to participate in a lot more events this season, and of course I had camera on hand for each one. The most amazing part about this spooky month came from Justin not only consenting to participate in his Mommy’s crazy schedule each and every time, but truly enjoying every activity in which he participated. My boy really “gets” that Halloween is fabulous.

He is clearly my son.

So here’s our “best of”, which I hope you enjoy. If people had told me on Justin’s second Halloween (the one where he remained surgically attached to me while we canvassed our neighborhood in the hopes I’d score Reeses Peanut Butter cups) that one day my child would think trick-or-treating was fun, I wouldn’t have believed them. Actually, I would have laughed, stolen more of my son’s candy, and then told them I didn’t believe them.

This year luckily, no hollow laughter was involved, just an inappropriate consumption of carbs. And I’m thrilled to share our “season” with you.

(“What’s up dude?”)

(Deciding whether or not witches are real…)

(What’s better than wearing your costume to school?)

(Even Bumblebee needs to rest!)

(“Hey, you guys are going on the hayride too?”)

(Loving Halloween, just like his mommy…)

(Somebody adores a good hayride!)

(That guy from Halloween Wars has nothing on Zach…)

(So many pumpkins, so little time.)

(Giving gluten-free Halloween cookies a shot.)

(The master at work…)


(Because when your previously non-verbal child asks you to dress up, you yank your “pre-child serving wench” costume out of the closet, pray it still fits, and wear it with pride.)


November 9, 2011

Love Thy Neighbor

Posted in Life's Little Moments tagged , , , , at 10:46 am by autismmommytherapist

I adore Halloween. The truth is, like my birthday, the revelry surrounding this holiday endures for an entire month, and if I could, I’d extend it all year (once again, much like my birthday). The love and reverence I feel for All Saints Day extends all the way back to the early days of my childhood. My devotion was ramped up considerably by my voracious reading about ghosts, goblins, and all manner of haunts, usually conducted with a contraband flashlight in my bedroom. It culminated with the excitement of wearing my mother’s homemade costumes in our town’s Halloween parade, the memory of which shames me, as my kids’ spooky-wear always hails from a plastic bag (thank God I scrapbook, otherwise he guilt would consume me). In short, I’m a groupie.

Last year, I even dubbed myself the Halloqueen. I am that serious.

I don’t think it’s possible for me to devote just one blog entry to this fabulous holiday, so I’m going to give you a bit of a preview here (I know, I’m such a tease), and I promise to regale you with the entire month’s events shortly. Today, I’m just going to focus on the grand denouement of the day itself, and a realization I came to as we paraded throughout our neighborhood, me and my mother, each with a boy in hand.

In addition to loving Halloween (and who doesn’t?!), I really love my neighbors.

It will be six years ago this January that Jeff, Justin and I left Washington, DC for the suburbs of Jersey, and I will say that the relocation did not occur without some trepidation on both of our parts. My husband and I had lived within the shadow of the White House for over fifteen years. Our social lives, and most of our friends, were encapsulated within the confines of the beltway. We’d both gone to grad school there, had taken our first stabs at “real” employment in our nation’s capital. For some odd reason, I never got lost while driving throughout the city (which frankly was another reason I mourned leaving the area). Fortunately, our family had the luxury of choosing where we lived, and Jeff and I both knew moving back to the Garden State would afford Justin more educational opportunities, as well as more access to family. We were grateful we had a choice.

But in some ways, for me, returning to where I grew up felt like a step backwards.

I quickly got over it, in part because I was insanely lucky my spouse could move two hundred miles away and keep his job, and in part because this was the best thing for my kid, and really, it’s supposed to be (at least in part) about him. Our first few days in our new residence were literally spent digging out from the mountain of paper our moving company had wrapped our treasures in (I recall thinking that if Justin hadn’t been at my mother’s, we would have lost him in the house). I’d had ambitious plans of getting out to introduce myself to the neighbors, but there was always another box to unpack, and since our son would be returning to us in seventy-hours, organizing became our priority.

I need not have worried, because our across-the-street neighbors came by with their lovely children and chocolate donuts (I immediately liked them), and the hopes that we had a child close to their kids’ ages. I remember my heart clenching a little as I realized our sons were in the womb at the same time, but knowing that unless my neighbors’ boy liked to spin things, he and Justin probably wouldn’t be playing together. I didn’t divulge our situation then, just thanked them for much-needed carbs, and a promise to visit soon.

Then Justin came back, six therapists from Early Intervention started working with him, and I barely left the house again until February.

It finally occurred to me after a month of hibernation that the families surrounding us might be curious as to why we only came outside to get the mail. One day, when I noticed a few of the locals were gathered across the street, I gathered a bundled Justin up in my arms, grabbed a few brownies from a box I’d managed to throw together, and took the plunge. We walked over hand-in-hand, and I introduced both of us to the gals. I explained that we weren’t in the Witness Protection Program, and that the cars constantly rotating outside our abode were from Early Intervention. I divulged that Justin had autism, and waited to see what their response would be.

Honestly, they couldn’t have been more kind.

The initial precedent that was set has endured for the past six years, and has ultimately included Zachary as well. The women in our corner constantly ask how the boys are doing, and genuinely want to know the answer. I know, without having been told, that the people in closest proximity to us have discussed autism with their kids, and told them to remain respectful to my boys, to always say “hi” when they come int contact with them. I’m also confident that if anyone ever spoke in a derogatory manner about my progeny, these same children would defend them to the hilt. I happen to have the great fortune to live in a community where children are still taught to have compassion.

Believe me, I’m lucky on that front too.


I realized that lately I’ve begun to take this universal compassion a bit for granted, and I shouldn’t. My Mom reminded me of how fortunate we are on Halloween, after running into the neighborhood clan on our trick-or-treat extravaganza, as ballerinas, witches, and monsters paraded past us with the sole intent of satisfying that devilish sugar fix. The woman who had initially welcomed us made a point of stopping, complimenting the boys on their costumes, and wishing them a happy holiday. She made mention of what a good boy Justin was at the last house, looking people in the eye, standing patiently, and taking only one candy when the bowl was proffered. She also noticed how happy he was to participate. These are all things he and I have been working on for years, small goals that have finally come to fruition. The other moms noticed too.

Validation and chocolate, hand-in-hand. Why wouldn’t I love this holiday?

I’ve been extremely lucky these past eight years in terms of Justin’s progress, and the community at large. There haven’t been more than one or two stares or comments directed at my boy, which I attribute to the work of the autism advocates who came before me. That universal acceptance has helped, given me one less burden to bear. The fact that I live on a street where my boys are not only tolerated, but welcomed, has meant the world to me.

And now, as Halloween comes to a close (sigh!), I just want to say thanks.

October 27, 2011

Halloweenfest and More…

Posted in Fun Stuff tagged , , , , , , at 2:40 pm by autismmommytherapist

My son takes my hand, clenching and unclenching it tightly as he usually does when he’s excited. We walk together through an exquisitely constructed archway of flowers adorning an equally lovely path, and a witch runs right in front of us, followed closely by a goblin in hot pursuit. They are gone in a flash, and my boy doesn’t even flinch, because he’s dealt with these supernatural beings before, and knows these particular spirits of the netherworld are harmless. The path finally ends, and before us looms a large field sporting a haunted hayride, pumpkins for painting, an inflatable fire truck slide, and hot dogs and popcorn for all.

My boy takes it all in and grins, because he knows it’s that time of year again. It’s the annual SEPTA (Brick Special Education PTA’s) Halloweenfest, and everybody is in for a good time.

This year, my son Justin, an eight-year-old boy with moderate autism, is delighted by the sights and sounds around him, far more eager to participate than he has been in the past. We’ve been coming to this event for years, and there have been times when we haven’t even made it through the first line while he waited for his turn in the bouncy house. I’ve also learned to get there early, and this year we only endure a slight wait for each piece of equipment, Justin standing calmly at my side as he now knows the drill.

In rapid succession he masters the fire truck and a maze I’m not certain his mother could have conquered, and congenially walks with me to the center of all the action. Pumpkin painting is not to his liking, but popcorn does the trick instead. He stands by my side patiently as his social mom actually carries off three consecutive conversations without having to chase him, and as I glance down at my sweet boy quietly munching kernels with gusto, I feel a wave of gratitude sweep over me.

All in all, we stay over forty minutes, compared to our not-quite-ten of last year. It is a banner day for us both.

I’ve been attending meetings and supporting the Brick SEPTA for the last four years, and as such I’ve been privy to watching the organization grow and evolve. SEPTA was originally formed in 2004 to address the often unique needs of the special education population. It is comprised of parents, teachers, and members of the community who have come together to provide a forum of support for the children of this school district, and for each other as well. It meets nine times a year, and has created an atmosphere of true collaboration which has led to some fabulous events for children (see below). It has also provided a number of inspiring speakers, all of whom have dispensed incredibly valuable information to our group.

Plus, they always have donuts. It’s a big selling point for me.

This year in particular, president Mary Tara Wurmser, as well as officers Dina Crepaldi, Vinnie Muti, Janet Bixenman, Nicole Barresi, and Sherry Doyle, have combined forces once again to organize some creative fundraisers, wonderful events, and interesting speakers. Two of my favorites (I can’t pick, I love hamburgers and bargains in equal measure) will be held in the near future in Brick at Cheeburger Cheeburger on October 27th, and Five Below from October 27-31.

They are also working with the BMAC (Brick Municipal Alliance Committee) on a holiday event in December that’s a favorite for our kids (and involves a certain “jolly someone”), and a family bowling night solely through SEPTA as well. They will be highlighting speakers on such pertinent topics as transitioning to adult life and learning differently with ADHD, and offering a technology and social skills night as well (due to my technological illiteracy, the former subject will be of great interest to me).

In other words, if you join Brick SEPTA, at least once a month you can be guaranteed an opportunity to learn something, speak with other adults without interruption(!), and have the chance to consume a carb. It’s a win-win for all.

You can check on the Brick SEPTA website for all future events and meetings, with the next gathering taking place on Monday, November 14th, at the Educational Enrichment Center at 7:00 PM. Please know that all are welcome to attend, and I can guarantee the word welcome.

Just make sure you save room for that donut.

http://www.bricksepta.org/

October 21, 2011

Gratitude Attitude

Posted in Uncategorized tagged , , , at 9:58 am by autismmommytherapist

This week’s Gratitude Attitude goes out to my Aunt Candee and Uncle Ken (yes, they’re getting a lot of “air time” these days), for a fabulous day on the farm. Zachary declared he would locate the “biggest pumpkin so the whole world could carve it” (which smacks of “Hands Across a Pumpkin” to me). Justin was so enthralled with the experience that upon our return, he insisted my husband remove both gourds from the trunk before he would even enter the house. Not only was there pumpkin picking and a hayride, but the day culminated in watching my youngest navigate a real tractor on his own, a flash-forward to his teen-age years. It appears we’ll be in a bit of trouble…

Thanks again to Candee and Ken, and to my mom and Kate for taking part in our wonderful day!

October 19, 2011

New Blood

Posted in Life's Little Moments, My Take on Autism tagged , , , , , at 9:26 am by autismmommytherapist

I’m closing in on my second year of writing this blog now (and it seems like just yesterday I whined to my husband I’d never have enough to say on a weekly basis), and I’ve noticed the subjects of my posts are becoming cyclical. I just finished writing about what I like to call our family’s “Second Consecutive Fabulous Summer”, and pretty soon I’ll present to you my pictorial opus on the five thousand Halloween activities I require my children to attend. There have been some huge leaps of progress in the past year with both boys (and perhaps with their mommy too), coupled with seemingly insignificant baby steps that most human beings would miss. Since I am bound and determined to revel in what I like to call the “minutiae of improvement” EVERY SINGLE TIME it occurs, I’m happy to say I recognized this latest accomplishment of my eldest son, and would like to share it with all of you here.

And in true Halloween spirit, it has to do with blood.

One of the first posts I wrote a year-and-a-half ago was called “Angel for an Hour”, a missive about the trials and tribulations of the annual blood draw required of Justin so that he can remain safely on his medications, drugs that have made such a great difference in his life and in ours. Traditionally, the experience has been about as fun as having a root canal conducted at the DMV on the last day of the month, while simultaneously surviving a bikini wax gone awry.

Justin has been enduring these intrusions since he was a toddler, and despite upping the reward ante annually and the addition of a numbing cream on his arm (the one that literally saved my ass during the fertility wars), he has detested this event each and every time. For him, the experience has not just been about an aversion to pain- it’s also a sensory debacle. Getting his skin pierced and a needle inserted intravenously is a close cousin to his aversion to wearing hats, his disgust with family members wearing hats, any labels on his clothes, or the damn boardwalk wristbands it took two seasons of demand and reward to get him to tolerate.

Justin is not a boy who enjoys “extras”.

So it was with familiar trepidation that I booked our appointment for the earliest possible time on a Saturday morning, which is not the slightest bit inconvenient since the child gives roosters a run for their money. Finally the day of the draw dawned, and as we pulled into the empty parking lot armed with every conceivable toy that my SUV could handle, I noticed our first small step in the progress wars. There was no backseat protest, no utter indignation at our destination point. No low-grade (or who are we kidding, outright caterwauling) accompanied either the sultry sounds of Stevie Nicks or our car into those narrow parallel lines. I looked into the rearview mirror, and watched my son rocking back and forth with glee, clearly familiar with our destination, offering his tacit approval.

The kid was even smiling.

We made it through the waiting portion of the appointment with ease, my son casually perched on the edge of a chair until his name was called, walking slightly in front of me to an empty row of cubicles. I prepared myself for extraordinary multi-tasking, which traditionally has involved corralling my son while attempting to respond semi-intelligently to the Lab Corp representative’s questions, but I needn’t have worried. My boy just sat in the seat next to mine, whipped out his DVD and the vast array of choices I’d packed to placate him, and bided his time until I was done. This year, I didn’t have to try to hold his seventy-pound frame on my lap, or run after him to prevent his exploration of medical waste. He simply waited for ten entire minutes with ease.

I’ll say it again, in case you missed that last sentence. My boy waited for ten minutes with ease.

By this point I was pretty much ecstatic with our Lab Corp experience, sadly almost as giddy as when I got on that plane to Mexico this spring (this is what my life has come to), but I’ve learned not to get cocky in these situations. We still had the devilish draw to conquer, and were by no means out of the woods yet. As the technician finished recording our information I turned to Justin and told him we were done, and he simply stood, smiled at me as his favorite scene from Bolt regaled us for the thousandth time, and walked next to me without protest down that long corridor to bloodletting.

It’s October. I’m indulging in the drama.

We park ourselves in familiar chairs as I inform the technician that my son is eight and autistic, and I watch her eye him carefully, then turn back to me and say, “no problem”. I tell him to go behind the curtain and he complies, DVD player and glorious smile in tow. He slides right back on the chair, even makes an attempt to push up his sleeves by himself. I ask him to take off his coat instead and he does, revealing a t-shirt worn for easy access and two band-aids securely located in the crook of his arms, still intact with their magic cream.

I am stunned, because along with hats, glasses, and on occasion clothing of any kind, my son has rejected those plastic strips vehemently since toddlerhood, even the good ones with his favorite characters represented. Justin glances down as I slowly remove them and wipe off excess white, then returns to his player, far more interested in how a dog is going to save the world after all. Inwardly, I smile.

Hell. Today we’ve conquered waiting AND needles. The band-aids are almost over-kill.

The technician is extremely competent and kind, the latter a coveted and not necessarily frequent bonus, and within two minutes our mission is completed. During his “piercing” there is not one moment of protest, not a tear, no fuss. He in fact barely notices what’s occurring, seems slightly surprised when I motion him off the chair. In a week or two I’ll find out about the state of his thyroid, his triglycerides, and his overall health. I’m confident we’ll have positive results, and I’ll put this entire experience out of my mind. One of life’s little myriad annoyances will occur and I’ll momentarily forget this compilation of events, these small steps to progress that mean everything to me, to my boys, to my family.

But right now, as I escort my son back down the hallway at this early morning hour I’m just so proud of him, and all I can do is smile.

April 7, 2011

Get the Picture

Posted in If You Need a Good Laugh, Life's Little Moments, My Take on Autism tagged , , , , , , , , , , , , at 7:59 pm by autismmommytherapist

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.

Immediately.

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.

November 17, 2010

One Good Deed

Posted in Life's Little Moments tagged , , at 10:40 am by autismmommytherapist

One questionable act of kindness, and all hell breaks loose.

Last night I dragged my youngest child back to our local mall to pick up our holiday pictures (yes, I know it’s only the beginning of November, but it should be clear to all of you by now that I’m a planner), and even though we were smack in the middle of the “witching hour”, everything went smoothly. Although I maniacally tortured the poor woman at Picture People with multiple reprints, we were in and out of there in half an hour (THIS is why I go in November). My good fortune continued on our next errand as I was subsequently able to secure next year’s sweaters for photo shoots in under ten minutes (try finding anything red before Halloween, I DARE you). I even managed a slight detour to Starbucks and was able to convince Zach that just waving at Santa as we whizzed by would not preclude him from gracing us with gifts at Christmas (plus I told him Daddy would cry if he didn’t get to see Zach sit on his lap, and that was the ultimate decisive factor). All in all, I had those damn photos in hand, had knocked a few things off my holiday shopping list, and found a salt-and-caramel-laced hot chocolate MUCH to mommy’s liking (trust me, try it sometime).

Then I ruined everything by going home.

We were mere minutes from the warm mecca of my still Halloween-laden living room when I heard a slight, strange, guttural sound emanating from my youngest child’s mouth. I quickly slowed down, half turned my head, and asked him if he was okay. His muttered answer was unintelligible, so I scooted to the side of one of our neighborhood streets, flipped on the inside light both to see him better and to comfort him, and repeated my question. Zach just smiled and said “there’s a cough stuck in my throat, I NEED juice!”, and secure in the knowledge my son wasn’t choking to death, I reassured him he’d get it when we got home. I then put the car back into gear, turned off the light, and returned to the road.

Ooh mommy, bad, bad idea.

Immediately Zach screams “it’s dark, turn on the light”, which due to daylight savings time and the fact he rarely leaves the house after dinner, was the correct observation. I tell him in my SUPER-rational tone of voice that I can’t drive with the light on, which only makes him ramp up the volume even louder. I even inform him the police will pull mommy over and yell at her, which normally would solicit some type of compassion on his part, but he is having nothing to do with my excuses. It’s dark, and he wants to see the light.

Don’t we all.

I pull into the driveway, slide him screaming from the car, all remnants of our lovely afternoon together completely vanished. I carry him to the house but have to set him down to open the door as he is such a big boy now, but he refuses to cross the threshold. Apparently his attention has been captivated by the jack-o-lantern he’s studiously ignored since we both carved it (you know, the one which almost made me sever a major artery), and he’s decided it must get lit.

I decide I am SO in tune with that idea.

I yell for his father, because I know once I enter the house there’s dinner to throw together, two kids to get on the potty, one lunch to be made, notebooks and toilet successes to be recorded, meds to be dispensed (sadly, none for me), and even Super Nanny with her pretty charts just couldn’t do it all solo. Thankfully Jeff is already coming down the stairs to figure out what the crisis is all about, so I dub him “in charge” of Zachary, and make my way inside. I dump our treasure, field off two requests from Justin simply so I can take my shoes off, and hear the words “that’s disgusting!” belted out from my husband’s mouth. It seems tragically, that our surgically enhanced vegetable has got some nasty green going on inside of him, and he needs to go. With my youngest watching from the open doorway Jeff retrieves a large garbage bag, throws “Jack” into it, and rounds the corner to deposit him in pumpkin heaven.

Hah. And I thought driving home three blocks in the dark might scar Zach for life.

The trickle of tears turns to a torrent, with my son clutching his father’s leg and wailing “I WANT MY PUMPKIN BACK!”, and me locking eyes with his dad and conveying the message “this one’s yours, buddy”. Zach is inconsolable, so after I check on dinner status, get Justin out of the bathroom, and have the temerity to use it myself, I engage my brain and try to figure out how we’re going to get out of this one. Dinner time is often tough for Zach, reminiscent of any number of historical inquisitions. If the crying continues he won’t eat, then he’ll be up in the middle of the night hungry, then mommy will be tired.

Nobody likes mean OR tired mommy.

I switch places with Jeff and pick up my sobbing, snot-ridden son, who quickly asks “WHERE DID DADDY PUT MY PUMPKIN?!”. I realize the answer “the garbage can” will guarantee we’ll pay for at least another year of psychotherapy, so I don my mommy/teacher/blatant liar’s cap and cobble together a response.

“Honey, Jack got sick, so Daddy took him home to his mommy in the pumpkin patch”.

Tears stop mid-stream as I watch Zach processing my outrageous deviousness. He looks away from me as he always does when he’s thinking hard, then turns back to me with a slight grin and says “Get my doctor’s kit mommy. Jack’s sick. I’ll go to the pumpkin patch and make him better”.

Crap.

I am scrambling now, because the allure of a good night’s sleep summons my creative side like nothing else in this world, and I look at him and say, “Well, it’s nighttime now, and Jack’s asleep with his mommy. We can practice on his brother Zach (a pumpkin unmolested by cosmetic procedures) in the morning.”

I hold my breath. The crying stops. He buys it.

So today, after securing my oldest on his own form of transportation, my youngest and I braved the early morning chill and “practiced” on sibling Zach. I am PRAYING this will appease him fully so that I’m not required to haul Jack out of our garbage can and somehow spirit him unnoticed to a nearby pumpkin patch, an outing which will not be reinforcing to his mommy, not one little bit. So far Zach seems content with taking his namesake’s temperature, assessing his heart rate, and checking his reflexes (this particular gourd is a bit lethargic), and after pronouncing his patient “cured”, he happily boarded his bus this morning. Since this kid retains things better than I do before a round of PMS I’m not taking for granted that he’ll forget Jack, but I’m daring to hope, and asking you to keep your fingers crossed for me as well.

And if this doesn’t work, you can bet my reward will be a lot more sophisticated than a caramel-laced hot cocoa.

 

 

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