April 16, 2012

Easter Blessings

Posted in Life's Little Moments, My Take on Autism tagged , , , , , at 10:44 am by autismmommytherapist

“Mom, is it okay if I run?” my youngest asks me innocently, even though he’s just heard our SEPTA president (Special Education PTA) tell all the kids not to barrel through each other during the Easter Egg Hunt. I ask him to repeat what she just said, and he looks at me and responds dejectedly, “no running”. He then proceeds to strike a perfect runner’s pose, teetering on an imaginary line keeping him from conquering hundreds of half-hidden, brightly-colored ovals.

I fear this will be a losing battle.

Sure enough, on the count of “three” over a hundred special needs kids, their siblings, and my son make a break for their treasure, skirting every copse of trees in this sparsely- populated wooded area that is hosting the event. We’ve been asked to limit our take to twenty, and as me and my sister-in-law trail behind Zach I ask him to count his pile, which he dutifully does. When we reach the magic number I gently remind him we’re done, and for once there are no “but Mom!” protests. We head back toward our point of origin, a parcel of land now hosting the Easter Bunny, which of course makes me eager for a photo opportunity. I ask Zach if he’ll pose with him, and he smiles shyly and says “yes”, for which my scrapbook is eternally grateful.

I have my priorities.

I treat Easter as I do my birthday, which means it is a holiday meriting multiple celebrations. Next weekend there will be two more such excursions, one taking place in my own backyard, and one in my mother’s (they are guaranteed a good crop at either venue). If we’re feeling brave Jeff and I will attempt to take the boys on the Easter train at Allaire State Park, an activity which will require patience on Justin’s part, so we’ll play it by ear. Of course the grand denouement will involve elaborate Easter baskets which I love to create, particularly given the fact I’m not sure how much longer Zach will think this is cool.

Given his newfound burst of maturity, our days with this activity might be limited.

Zach bounds back over to me after I’ve clicked a half-dozen shots just in case, and asks if he can play on the equipment. I nod yes after checking my watch, then call after him to remind my son not to bowl over several toddlers standing between him and a soggy slide a few hundred yards away. We have a little bit of time left before we return home and relieve Justin’s home therapist from her duties, and I smile, because this outing, unlike last year, has been a resounding success.

A little over a year ago Jeff and I split up with the boys on a frigid Saturday, my husband taking Zach to an Elks Easter party, and me escorting Justin to this very spot. He had seemed excited when I lead him to the car with basket in tow, making his energetic “eee” sounds all the way to the park. I’ve learned how to time things so he’s there neither too early nor too late, and last year we made it with five minutes to spare. After freeing him from the car I grabbed his hand and inserted a pastel-colored handle into it, and we made our way over to the starting point.

I had enough time to greet the SEPTA Executive Board before Justin was off like a shot toward the water, pumping arms and legs steadily to reach the pier, often a coveted destination. I remember my friends calls to him were echoing mine, even as I knew it was a losing battle. Once Justin makes up his mind that something else is more rewarding for him, there’s no reversing that decision.

Can’t imagine from where he acquired that amount of stubbornness.

I recall feeling a fleeting stab of disappointment as I trailed after him, felt sad he wouldn’t be participating in such a lovely and meticulously planned event, sorry for me that I would neither get to witness it nor record it for posterity. Then, with our feet sunk in sand as we trudged our way toward brackish water, it hit me. He’s almost eight years old. Even if he didn’t have autism, he might not want to score pastel-colored cylinders. He’s perfectly thrilled to do his usual routine here.

Nobody’s sad but me.

I felt a weight lift off of me then, a void where guilt sometimes resides when I don’t attempt certain activities with him, even though I know in my mother’s soul that just because Justin “should” like them doesn’t mean he will. We continued our trajectory out onto the dock, my eldest running back and forth, entranced with the ripple of waves on river. He was perfectly content with our adapted activity.

As my youngest son is before me, right now.

I snap back into the moment, as I’m trying to do more often, and know that both boys are safe. Both of my sons are happy. Both children are living in their respective moments, one at home with his therapist, one outside and immersed in play. The two of them are exactly where they’re supposed to be.

And for once, so am I.

March 14, 2012

Brick SEPTA Easter Egg Hunt

Posted in Fun Stuff tagged , , , , , , at 9:23 am by autismmommytherapist

I hear a triumphant “Got one!” shouted from behind me, but I am in pursuit of my eight-year-old son with moderate autism, and can’t stop to behold the treasure a pre-schooler has found. I’ve attempted to bring Justin to the annual Brick SEPTA (Special Education PTA) Easter Egg Hunt at Windward Beach, and he’s let me know in no uncertain terms that he wants no part of it. I make a mental note to skip this part of our Easter traditions with him next year, realizing he may just have outgrown rooting around on the ground for colored plastic cylinders. As I chase him down a hill toward the river, I look back over my shoulder one more time to take a brief glance at the festivities.

To my delight, at least fifty special needs children are gleefully participating in the event that Justin has decided he is way too cool to attend.

This is just one of many events that our wonderful local Special Education PTA has hosted over the years. There’s the annual Halloweenfest, where special needs children can paint pumpkins, participate in a hayride, and down large amounts of free buttery popcorn, which has always been my son’s favorite part.

For the first time this year SEPTA, in conjunction with the Lake Riviera Middle School and the Brick Challenger Program, hosted a dance for special needs children and their siblings, an event which was a resounding success. All these efforts are an attempt to make certain that kids who may be seen as “different” have the opportunity to participate in the same childhood staples that most of their parents have attended in the past.

This is why, despite my son’s disdain for this particular event, that I love the SEPTA Easter Egg Hunt.

I’ve taken my other child to local hunts over the years, but due to his tender age, he was often crowded out of the chance to collect his coveted prizes. On occasion I’ve had to literally cover eggs with my feet just to make certain my boy would walk away with one plastic concoction.

The great thing about the SEPTA Easter Egg Hunt is the abundance of eggs placed strategically in open view so that every child can claim at least a few for his or her own, and can truly participate in a traditional holiday ritual. There’s also a guaranteed visit from the Easter bunny himself, which after I concluded chasing my son back up the hill I was gratified to see that his presence brought joy to a number of children. Every kid who wanted to greet him was able to get a turn, and in a timely fashion.

All in all, it was clear that every child participated fully in a timeless, and fun, tradition.

I’ll most likely be taking my youngest child to scour the earth for pastel eggs this year, and I’m certain he’ll revel in discovery and acquisition, much as his mother did many, many, many decades ago. If you are a member of the Brick SEPTA and would like to participate, please see the link below:

http://www.facebook.com/events/185215351587371/

Saturday, March 31st, 11:00 AM, Windward Beach

See you there, and don’t forget your Easter basket!

May 22, 2011

Great Expectations

Posted in Life's Little Moments, My Take on Autism tagged , , at 10:59 am by autismmommytherapist

It’s the Saturday before Easter, and Jeff and I are trying desperately to corral two young boys onto the potty and into their sneakers in a somewhat timely fashion (and failing miserably). Truly, it’s our fault the kids are so antsy, as we foolishly put their Easter baskets adjacent to the front door in an effort not to forget them, and now that the kids have seen their egg receptacles, all hell has broken loose. Justin is running back and forth yelling his usual excited “EEEEEEEEE!!!!!!!!!”, which proceeds every occasion he believes will be fun. Zach is almost literally jumping out of his skin, screaming “It’s Easter, it’s Easter!!”, which it’s not, but that technical fact seems to be lost on our little guy. My husband and I have a moment where we look at one another and question our collective sanities, but we rally, and eventually make it out the door.

All I can say, is at least as far as Zachy’s concerned, the Easter bunny better damn well show.

We’re going to separate events today, as my local school district’s special education PTA is holding an egg hunt at a nearby park my oldest still loves, and the town next to ours is holding their own Easter shindig courtesy of the Elks Club, and I want the McCaffertys to represent at both. Our SEPTA works tirelessly to put together events for children with a variety of special needs, and our local Elks, Lions, and all other animals of forest and jungle are incredibly generous in their support of our kids as well. I’ve also learned over the years to match the program to the child, and while Zach would be equally content in either location, Justin would mutiny if brought to the Elks party. We tried to make it work at Christmas, and within ten minutes he had haltingly scribbled on his craft place mat, regarded grown-ups in the guise of elves with utter disdain, and commenced the low-grade whine that meant we weren’t even making it to the chicken nuggets. It just wasn’t his thing.

In other words, I’ve tried to stop making the holidays about me, and think about the children. It’s a work in progress.

After securing Justin safely in the car we make it to the park in record time, and I anxiously regard my watch to ascertain if we’ve arrived too early, meaning I’ve already blown it for him. Waiting is not Justin’s forte, and my chances of getting him to engage in this activity, even one that he loves participating in at my house and at Grandma’s annually, are shattered if he has to stand around for even five minutes (he’d make a great celebrity). I buy us a minute or two by letting him reorganize my CD collection in its black plastic holster, but eventually even handling Sheryl Crow bores him, and it’s time to exit the vehicle.

I place his basket in one hand and grab his other tightly since we’re in a parking lot, and although he’s attained almost eight years on this earth, the likelihood he’ll run in front of a car he’d never notice remains great. We make our way across damp, loamy earth and approach the open field, and I regard dozens of parents and children eagerly anticipating the imminent festivities, the children festooned in pastels, straining against the confines of the adults’ protective hands. I lean down and close the slight gap remaining between me and my eldest boy, and remind him this is an Easter egg hunt, that it will start soon, that even as of last year he still loved acquiring chicken cast-offs. As we approach the perimeter of the playground just adjacent to the field I have high hopes he’ll enjoy this, and I retain those hopes until we reach the first group of egg seekers, at which point he stops dead in his tracks. Justin looks around, takes in the scene, then makes up his mind about poultry products, Easter, and participating in group activities in general.

His lordship is not pleased. In the next second, he takes off.

To be completely fair to Justin, we have a routine when we come here, one I’ve tried in vain to vary over the years. The two of us cycle through each of the three playgrounds, tiered beautifully so the last one culminates with beachfront property at river’s edge. Once he’s finished conquering his plastic behemoths he always makes a dash for the dock, at which point his frantic mother tries desperately to keep time with his loping gait, as well as anticipate what fishing lines or sharp cutlery he’ll possibly impale himself upon prior to reaching the end. We conclude with a stroll down the beach, which generally consists of Justin’s attempts to play with toddlers’ toys, and my explaining he has autism and didn’t mean to destroy their sand castle/kick sand in someone’s eye/steal their precious treasure. Eventually, we make our way up the steeply graded hill to the car, he happy as a clam with the day’s adventures, his mother looking as if she’s just experienced a night sweat.

All in all, we will have killed twenty-seven minutes of our day.

I rush after him as he boycotts swings and monkey bars and makes a break for water, half registering the confused looks on some of the adults’ faces as the announcement has just come that the hunt is about to begin. He swerves right as I anticipated, and heads for that jutting wooden contraption that usually contains so much danger, but today, for once, it is mercifully bereft of hooks and bait. I contemplate attempting to drag him back up the hill as I know all the good loot will be retrieved in under ten minutes, but instead, I simply follow Justin’s plan. Within minutes we are at the end of the pier, buffeted by conflicting winds on all sides, enveloped in the scent of briny sea. My son runs back and forth, back and forth, halting occasionally to stare at the horizon, continually culminating his maneuvers with a mighty hug and kiss for his mama.

I glance back over my shoulder, and although I cannot see what’s transpiring above, I can hear the ecstatic echoes of joy carried across the current, to which my boy is oblivious. I wait for the sadness to kick in, the regret that Justin is not enmeshed in the fun, the envy that my husband is surely witness to my youngest’s ebullient participation in traditional Easter fare.

I wait. And I notice that my usual melancholy around these affairs remains relegated to the recesses of my mind.

I look at my boy, really look at him. He is thrilled with his day, not sad in the least that he hasn’t acquired his colorful plastic prizes. He is, after all, approaching the mature age of eight, and perhaps he’s outgrown this timeless ritual. Perhaps the reasons for his lack of interest, in the end, are completely irrelevant. At this moment he is happy, at peace with the world, satisfied to engage in the customs of our tradition at this place he’s been coming to since he was the tender age of two. He is joyful in his play, remains immune to regret.

And this time, joyfully, so do I.

May 18, 2011

Letting Go

Posted in AMT's Faves, If You Need a Good Cry, Life's Little Moments tagged , , , , , , , , , , at 9:55 am by autismmommytherapist

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 26, 2011

Gratitude Attitude

Posted in Uncategorized tagged , , at 9:21 am by autismmommytherapist

Today’s Gratitude Attitude goes to the numerous individuals helping me keep the kids alive during “double spring vacation”.  I literally couldn’t have done it (or still be doing it) without you.  Many thanks!

I would also be remiss if I didn’t mention the Easter Bunny (the REAL one, of course) for making this past weekend so special for two little boys. The fact that she found Grandma’s house, as well as our own, is simply remarkable. Thanks EB!

April 19, 2011

Gratitude Attitude

Posted in Uncategorized tagged , , , at 2:05 pm by autismmommytherapist

Today’s Gratitude Attitude is extended to our local Elks and Special Education PTA for throwing two wonderful Easter egg hunts this weekend. I think Justin’s moved on from collecting plastic ovals, but Zach was incredibly excited to participate. Many thanks to everyone who made both events happen!

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.