June 25, 2011

Baby Steps

Posted in Life's Little Moments, My Take on Autism tagged , , at 12:14 pm by autismmommytherapist

Such tiny paths to progress, one would be hard-pressed to notice.

My eldest breaking free of his sitter, post-roller coaster, just long enough to gently squeeze my arm, and search my eyes to see if I had watched him soar.

Zachary lowering his head to his sibling’s lap without prompting, his brother not only tolerating, but welcoming the touch.

Justin’s hand gently ruffling his brother’s head, the slightest slip of a smile gracing his face as he finishes.

Such small gifts. Neither recovery, nor “normalcy”, words which have ceased to retain their meaning for me. Just simple moments to validate that both boys are safe, happy, and relate to one another. It’s not what I longed for years ago.

But these moments are still something, fleeting and fragile as they are. I hope I always take the time to see them.

June 18, 2011

Search Field Day 2011

Posted in Life's Little Moments, My Take on Autism tagged , , , , , , at 10:21 am by autismmommytherapist

“Mommy, where’s Justin?” my four-year-old inquires for perhaps the thousandth time, and I suck back my irritation (a technique I perfected during my twelve years teaching in elementary school), and tell him again, “soon”. A minute after imploring him for the millionth time to “please stop kicking my mutilated shin” under the picnic table, Justin indeed makes his glorious entrance. It’s Field Day at his school, and the festivities commence with every class from age three to twenty-one taking a promenade around the front entrance, until it’s finally my son’s turn.

Zach starts waving wildly as Justin’s teacher approaches and salutes him, and I crane my neck to look for my boy, hoping he won’t make a break for us and want me to take him home, as he has been wont to do in the past. Seconds later he comes into view, clutching the hand of his aide, looking mildly confused since he’s never participated in this pageant prior to today. He steps down off the curb and sees me, his grandma, and his little brother across the empty parking lot, and stops dead in his tracks, holding up the entire procession. I hold my breath to see what he’ll do next.

And then, he smiles.

This isn’t just any smile. This is his hundred watt, “I can’t believe three-fourths of the people I love the most are here right now” smile. With mild prompting from his para he waves, then continues on his way, checking back periodically to see if we’re still there.

Trust me, we’re not going anywhere.

Frankly, as I sit on my cold folding chair and watch the students of Search Day School parade by me I am ecstatic, because even a year ago, I would not have been able to remain at this picnic table. Although Justin enjoys parties, in his mind I am generally his primary reinforcer, or the equivalent of Disney. During his early childhood years in his first public school placement, I spent many a desperate hour in his classroom trying to convince him that musical chairs and chips were a far better deal than going home with mommy. There were entire years in our local school district where I didn’t attend any of his parties save the one dedicated to his birthday, which killed his shutter-bug, stay-at-home,  mom. It came down to this, as things so often do with autism- my having to choose to participate in a party which made me feel like a good mother, or boycotting the event and letting him have fun. I grudgingly chose the latter most of the time.

But as I look at him now, I realize at these events, I may finally be eligible for front row seats.


The children circle around the entrance way and reenter the building, as classes are staggered for this extravaganza, and it will be a good twenty minutes before we see Justin again. Since that doesn’t meet with King Zachary’s approval I take him on several walks around the premises, craning my neck back periodically to make certain we don’t miss Justin’s second debut. We wend our way back through brightly decorated picnic tables in time to see Justin march to the field for the first of his feats of strength, and I simultaneously watch my youngest commence meltdown mode.

This is completely inconvenient, as I seriously require commemorative photos of this event. Otherwise, my scrapbook will be devastated.

Just as I think I’ll have to do a “Sophie’s Choice” with my children, Jodi Ussuri, administrator extraordinaire, steps in and offers to take him off my hands for a while. Zach deigns to take her hand and walk/skip/hop/jump/run with her, which is not surprising since she has three kids, and is clearly a fun mom. When her babysitting stint is over, the words “bless you” accompany Zach’s tiny paw as it is handed back to me. These are words I frankly should have imparted to her, as the absence of my youngest enabled me to witness my oldest’s glory.

And glory, it was.

Sure, it was lovely that Justin carried an over-sized ball across a field successfully, then bounced on it as his classmates followed suit. Under his watch not one single tennis ball escaped the confines of a waiting barrel, deftly maneuvered for guaranteed capture by school personnell. He navigated a balance beam with relative ease, and at least attempted to sneak under the “luau-esque” wooden rods adjacent to those parallel lengths of wood.

In other words, Justin rocked Field day.

While I was thrilled by how far he’s come within the physical realm of things, happy to see him willingly and successfully participating in events requiring balance, concentration, and manual dexterity, there were a multitude of far subtler reasons I was grateful to regard these activities. Throughout every single request and demand, I witnessed my son’s eager compliance. I watched as he patiently took turns, neither rushing through nor attempting to avoid the task before him. Most importantly, I saw my son search for his family at every single station, executing his dazzling smile at us before switching to serious concentration mode, overjoyed we watched him perform.

Not only did he enjoy the festivities, he was ecstatic his family was there to cheer for him. Trust me, me and my mom are still hoarse.

Eventually, it literally rained on our parade, and students were hustled inside to consume their lunches while the three of us escaped to Panera for soups and salads (what a win-win day!). We returned to take home an excited Justin, a child happy to escape his routine whenever it includes going home early with me. As I walk him back to the car, I reminded myself that it’s not just the efforts of this particular school staff that have brought him to this place. In every moment of desired behavior, every nuance of glorious grin I received from my boy today, is the work of five schools, dozens of aides, teachers, specialists, doctors, Early Intervention workers, the fortitude of two parents, a patient brother, and the stubborn zeal of one determined grandma.

It takes a planet, not a village, to raise a kid like Justin.

We reach our waiting SUV chariot, he sees my mother and his sibling, and it’s like Christmas morning all over again. I strap him into his seat, kiss his forehead and tell him how proud I am of him, activate the GPS (just in case), and head for home.

And as we glide into traffic, I remind myself to live a little in the moment, and just be happy we’re here.

April 17, 2011

A Good Run

Posted in Life's Little Moments tagged , , , , , , at 10:18 am by autismmommytherapist

It’s 1:30 in the morning, my leg is throbbing, and I know I’ll never get back to sleep. Crap.

Generally, this is a wee bit early in the day for me to come to terms with what will now be a huge and necessary change in my life, but since I’m up, I may as well get the mourning over with, and put this time to use. You see, I’ve been a runner for twenty-odd years (okay, only nine miles a week, it still counts), but that ache below my knee, that recurring twinge that has periodically resurfaced over the last six months, is telling me my days of pounding pavement are kaput. There’s no mystery here as to the source of the pain, as I’ve already been to a good orthopedist, one I’m certain was in grade school while I was living in a dorm. He informed me during the appointment that I have severe tendonitis in one rogue and ungrateful leg, and then proceeded to lay out my choices for rectifying the situation. None of them made mommy happy.

My youngish specialist told me I’m lucky this is my first running injury in two decades, a fact of which I’m already well aware. He then informed me curtly that my options were as follows:  come to him for therapy, which will only alleviate the symptoms for a time (which, given my lack of the latter, is not really an option); run through the pain, ice it down, and use the fancy and expensive cream he’ll prescribe for me, which is the idiotic solution I’ve since chosen; or, quit running and take up another form of cardio (blech!). Since waking up before Leno’s over every evening that I’ve put those Nikes to work earlier in the day is not really a mature solution, I know my Chariots of Fire days are done. At least, in all honesty (commence groaning now), I can report that me and my legs have had a good run.

And as an added bonus, I know what I’ll write about this morning.

I know this is not an horrific situation, as I have been up for good at 1:30 AM for far more grave matters. In the past, I have spent the wee hours of the morn contemplating the accuracy of Justin’s pediatricians stating his behaviors were simply reminiscent of his father’s own early development, and that he would be fine (sorry guys, play again). The twilight hours have also found me conscious during those dark days when I watched my youngest start to slip away, and I literally wondered if I’d ever hear one of my children say my name again. Clearly, those were far more desperate times to be awake, knowing my intolerance for fatigue would only make the next twenty hours even more difficult than they would be had slumber enveloped me. I am aware that in this particular instance I have (crappy) choices, can choose to walk rather than run, will still be able to exercise, and when I’ve rested my leg, will sleep once again. I know that I’m fortunate to be able to “fix this”, as there are a number of other issues within our family I have not a prayer at altering. I can tell myself with all honesty, that this one will be okay.

Yet, I’m still pissed. And on this occasion, I’m indulging in this emotion.

In the past I’ve spent a great deal of time playing “it’s all relative”, primarily so I could get through the day. I’ve partaken in such rationalizations as “well, a man (while talking on his cell phone) drove into my face today and totaled my car with my four-year-old in it, but at least we’re still alive.”  I’ve selected the bright side with my youngest too, as in “yes, the autism diet seems to be working, he’s only had diarrhea six times today instead of twelve.”  I know I’ve sounded ridiculous on occasion, but that is my way of processing pain and grief, and so far it has worked for me. At times I’ve had to trot out “okay, this does totally suck, but at least nobody died”, as even the detectives on CSI could not have discovered the bright spot shining through, but fortunately I haven’t had to implement that one too often.

It sounds pathetic even to me.

But tonight (or this morning, depending on how you look at things), I’m not going to search for the silver lining. Things, while not perfect chez McCafferty, have been looking up for quite a while now, and I no longer feel I’m clawing my way to the top for a fingerhold on happy. I don’t feel inclined to bribe myself through the darkness, am content to ride it out, as I know I will discover light on the other side. This evening (or morning) I’m going to let myself be irritated that I’m losing something I love, without feeling compelled to bring in the habitual gratitude chaser I’ve felt in the past was necessary to stave off something even worse. Here, cocooned in the darkness of the gentle strands of the afghan my granny crocheted me, the one that still makes me feel cosseted by love, I’m going to gift myself the indulgence of simply being mad over something not even close to tragic.

This morning, I just get to kvetch.

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.