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 4, 2011

The Pot of Gold

Posted in Life's Little Moments, My Take on Autism tagged , , , , , , , , , , , , , at 9:31 am by autismmommytherapist

“Zachy, we don’t stand up in booths at restaurants” I gently admonish my youngest child, reminding myself that this is literally the first time he’s been in such an establishment in two years, since he’s an adherent to the gluten-free casein-free diet. While there are now a number of pizza places in our area that serve their fare without wheat, rice, barley, and oats (I imagine this is mostly due to Celiac’s disease and a recent diet craze by celebrities, not autism), I have yet to find a locale which can meet both of my son’s restrictions. Tonight however we’re fortunate, because the owner of this particular Perkins’s has no issue with my toting Zach’s dinner along with me from home, so we’re set. Both boys, to my delight, are eating well. And after I’ve cleaned up the multiple Picasso-like smears of ketchup enhancing both the design of the table and the glass-etched partition separating us from the other patrons in the restaurant, we’ll be on our way to celebrate St. Patty’s Day at Someone Special Needs You tonight.

A woman’s work is never done.

On our way over to meet my aunt for dinner prior to the big event my eldest son kvetched mightily, his disdain for his younger brother’s presence readily apparent, but about halfway to Perkin’s he finally settled down. I even caught him regarding Zach a few times with a look on his face that said “Can you BELIEVE she’s taking us here?”, and after I explained a hundred thousand times to Zach what our itinerary was for the evening, he got on board with the plans as well. After we pay for our meal and over-tip the nicest waitress EVER (short of shoving a mop and bucket in my “goody bag”, there’s no way I can ever restore this table to its proper cleanliness, and this woman NEVER complains), the boys run eagerly to the car, almost pulling our arms from our sockets in their enthusiasm. We quickly arrive at the church mere minutes later, and I relegate Zach to my aunt as I try to prevent Justin from bowling over some of the younger participants in the program.

Even though he’ll want to leave in twenty minutes, for Justin this moment is horseback riding AND Great Adventure all rolled into one.

Neither of Justin’s buddies are in attendance tonight, but we are fortunate to acquire a substitute, a poised, chatty freshman who I am certain will one day dominate the world (in a good way). Justin takes to her immediately, and she says due to her schedule she can’t commit to coming here every month, but she’ll try harder. I’m just grateful she’s here tonight, as the allure of SSNY for Justin is not the crafts, but the teen-aged girls. While autism may traditionally inhibit social interaction in its hosts, this is clearly one subset of the population for which Justin will consistently overcome his limitations.

His father is so proud.

My youngest son has also lucked into a buddy for the evening, and there is a point where for five consecutive minutes I get to chat with my aunt as my boys decorate their leprechauns, and construct their own personal pots of gold in which to house them. I’m constantly plying Justin with food so he will make it to the grand finale of the night, a hunt in the graveyard for gold nuggets of treasure to fill the green buckets they’re creating to hold their stash. Once again I’m impressed with how much effort Vince Scanelli and his volunteers have taken to throw this event together on a weeknight no less, and I’m still grateful for the flyer about SSNY that Justin’s pre-school teacher sent our way in his backpack four years ago. Generally at this point on a weeknight I’m just trying to remind myself to make Justin’s lunch for school, and this gentleman has been providing an outlet for children with all disabilities to spend time with neurotypical peers on a monthly basis. From the look of delight and concentration on Zach’s face, I think the McCaffertys have one more activity our boys can do together as a family.

Bonus.

Justin finishes his craft quickly, but manages to fill the remaining time until the treasure hunt with multiple trips to the bathroom, so for once I’m not spending the majority of my evening convincing him to stick around. Halfway into the hour Vince summons us all to the front of the church’s great room, distributes leprechaun hats to those who desire to don them (where does this man find the time), and regales us with the plans for the rest of the evening. It seems those naughty little Irish icons have distributed their wealth throughout the adjoining cemetery out back, and if we move quickly we can acquire them for ourselves before the green gremlins return to claim their cache. I look around me at the participants, ranging widely both in age and in the manifestation of their disabilities, and listen to their collective exhale of joy and anticipation. I watch Zach look up at my aunt in wonder as he rejects his hat, then I turn toward my eldest to see how he has reacted to the news of impending carb heaven.

He stands squarely in the center of the fray, his eyes mere inches from the mecca of  DVD movie heaven, smiling and entranced by the old man from Up. My son is completely unaware of his surroundings, could just as easily be in Disney, or at the DMV. For him, at this moment, none of the rest of us even exists.

Even a few years ago, this realization might have ruined the night for me. I would have been so saddened my son was oblivious to the excitement swirling around him I wouldn’t have been able to enjoy the moments of engagement he did have this evening, the connection forged with a girl I hope will be a new friend. I’m not certain I would have been able to move forward in my mind to the event to come, which will involve my two boys breathlessly foraging for their finds, relentless in their acquisition of gold. I don’t know that I could have pulled myself back from the abyss of what appears to me at times such a solitary state for my boy, one in which I’ve often envisioned he must feel so alone.

Except, perhaps sometimes, like right now, he actually doesn’t.

My goals for my boys have never altered over the years, have not been diminished by autism, have simply been reframed. I want what I’ve always wanted for them- health, hope for a safe and industrious future, and happiness. The longer I remain on the “autism tour”, the more I feel these elaborate goals are potentially feasible, will perhaps be attainable while I am still young and facile enough in mind to recognize we’ve achieved them.

And that day, in all its glory, will truly be the pot of gold at the end of the rainbow.

February 25, 2011

In the Spotlight

Posted in My Take on Autism tagged , , , , , , , at 10:30 am by autismmommytherapist

“No Justin, we have to wait!” I implore my oldest child, as he rejects the juice, popcorn, DVD player and toy I offer him in rapid succession. He is angry at me because I’m refusing to cater to his desire to visit the snack bar located in the middle of Fun Time America, which until a few minutes ago had actually lived up to its name. I’m summoning mean mommy because the line to acquire overpriced, undercooked carbs is thirty deep in there, and our chances of being seated are about as great as me being granted more than five minutes to myself at the end of this elongated holiday weekend. By accident Justin wrenches my wrist, and I feel my capacity for patience, already as thin as my annoyingly fine hair, completely snap. It’s been four consecutive days with children, I have a sinus infection that’s functioning as a bronchitis chaser, my husband’s away working in DC, and it’s winter.

Enough said.

Despite the circumstances, we’ve had a great time through the grace of POAC (Parents of Autistic Children), who have arranged for families with offspring on the spectrum to have the run of the place from 9-12 today, the last day of our celebration of the presidents’ lives. Since the weather out there is as pleasant as a trip to the DMV at the end of the month, I am especially grateful that we have somewhere to go this morning. The thought of schlepping Justin to our local arcade ONE MORE TIME is making me faintly nauseous, and this time I can’t blame the Zpack for my unsettled stomach. POAC, with their frequent family events, has once again saved my sanity.

I thought I’d discovered every remotely palatable venue for fun since we moved back to the Garden State five years ago, but apparently I missed one, and I’m thrilled to have a new option for the kids. Yes, it will cost me roughly a month of Zach’s college tuition every time I venture here with the boys. True, particularly at this time of the year, it’s a teeming germ fest. And yes, since Justin will force me to ride the spaceship simulator with him every time we cross the threshold, during each trip I will want to vomit at least once.

Again, it’s winter in central Jersey. It will be completely worth it.

We’re at the end of the event now, which for us has lasted an uncommonly long seventy-five minutes, a record with the McCafferty clan. Gary Weitzen, the founder of the non-profit, has asked me or my mother to speak for a POAC PSA before we leave, and since leaving my mom alone with two autistic kids under the age of eight in a crowded indoor amusement park is questionably a criminal offence, I’ve volunteered to take one for the team. The truth is my mother, with her thirty years in special education (culminating as it did in a stint as assistant superintendent in a large school district), will be far more compelling on camera than her congested housewife daughter. Within thirty seconds of waiting outside the staging area however it’s become apparent I’m going to lose a child if I don’t get some help, so I send Zachary inside to watch Grandma become a “movie star”. I then attempt, through my sinus haze, to conjure up productive ways to keep Justin calm for five more minutes.

All I can come up with is a trip to the bathroom. So much for creativity.

We pay our tribute to the questionably clean porcelain god (wipes, thank God for wipes!), and round the corner to what I hope will be a concluded taping. My mom has nailed her role on the first try, and since Justin is eager to enter the room and play with/dismantle the camera equipment, I allow him to barge inside. He actually becomes shy when he enters, and I quickly take the opportunity to seat him so I can chat with one of the volunteers, a POAC member I know well who’s filming the takes. Apparently Zachary has been enthralled with both watching Grandma speak “live” and seeing her simultaneously through the view finder, and in the spirit of the moment, the camera man asks him if he’d like to try it too.

Of course all I can think is “crap, he’s in a gray sweatsuit” (Toddlers and Tiaras’ moms have got NOTHING on me).

He lets himself be gently placed on his mark, the toes of his Spiderman sneakers jutting ever so slightly over the peaks of the black “X” criss-crossing the hardwood floor. Our filmmaker asks him to look into the camera, smile, and repeat several short taglines that will add a personal touch to statistics and facts, accomplishments and contact info that are the meat of a PSA. Since Justin is seemingly captivated by the unfolding events I walk over to the tripod and stand in close proximity, the better to encourage my budding star. Zach is asked again to look into the lens, and with enthusiasm utter four words I longed to hear eight years ago when his brother was first diagnosed, and our family was not as yet part of a community. He looks directly into my eyes, and repeats the words in a voice so soft and so utterly unfamiliar, I fear he’s spontaneously taken ill.

I smile at him encouragingly, and tap the black cylinder he should be regarding instead. I clear my throat and say in the best mommy voice I currently possess, “Louder Zach, you can do it, on the count of three!”, a command that’s a frequent pre-cursor to time-out, and one with which I’m certain he’s comfortable. I watch his entire body tense with excitement, and this time he stares into the correct spot, exudes a smile that engulfs his entire face, and repeats in a voice overflowing with enthusiasm, “YOU ARE NOT ALONE!”

This is my baby, who two years ago had a repertoire of five garbled words, found eye contact painful, and seemed to exist in a world of his own making. He is now standing still, following directions, and repeating entire sentences in an appropriate context. It is clear he is even having fun, and I watch contentedly as our director feeds him his last phrases. To say I am overjoyed watching him repeat his lines verbatim would be the glaring understatement of the year.

He nails them all, and asks for an encore.

I gently derail his dreams of fame and fortune and tell him it’s time to go home for lunch, and my mom and I begin the process of packing up children and gear to make the long trek to the car. Gary thanks us profusely, but I assure him it’s been our pleasure. Truly, in addition to training thousands of police officers, teachers, and bus drivers in our state, this man and his vision have also provided families with years of events where their kids can let loose, and just be themselves. While I deeply appreciate the former, the latter has proven priceless to this family. A few minutes surviving Justin’s irritability from denied access to carbs is the least I can do for them today.

Soon we’re buckled into our seats and navigating our way back to the parkway, Justin inhaling a juice, my mom and Zach engaged in a discussion about the current existence of dinosaurs. I am left to a few peaceful minutes with my thoughts (hallelujah!), primary of which is profound gratitude that I have found this organization, as well as the people encompassed within it. I know not everyone has a POAC in their backyard, and I never had anything resembling this non-profit during those long years in DC either. Perhaps the one thing I’ve learned however, the one universal I’ve discovered for all families in the almost-decade I’ve been dealing with autism, is this:  make your “autism friends” wherever you can. Whether it’s a parent group, a mom in your special ed PTA, or a person you meet online, someone is out there to guide you and support you. Forge your connections whenever it’s possible, and never let go.

In the precious words of my youngest child, you are not alone.

For information on how you can volunteer for POAC, or just participate in their events, please visit the website at: www.poac.net