June 1, 2012

Field of Dreams

Posted in Fun Stuff, Life's Little Moments, My Take on Autism tagged , , , at 9:57 am by autismmommytherapist

It’s an absolutely gourgeous morning, perfect for celebrating Justin and his classmates’ feats of strength at his school’s annual Field Day, and I am thrilled to be there. In a matter of minutes my eldest son will come outside in a school-wide parade to kick off the event, one in which hopefully Justin will show as much enthusiasm to see us as he did last year, when this was all new to him. It turns out I needn’t have worried, because his slight smile of recognition is in evidence when he makes the turn near our table, and it is clear he knows what’s about to transpire. My mom and I wave gleefully at our boy as he proceeds back to his classroom to await the festivities, with one slight look backwards to make sure we’re still there.

I can assure you, we’re not going anywhere.

One of the things about having a child with moderate to severe autism is that sometimes there aren’t a great deal of ceremonies in which to celebrate their accomplishments, which is why this day means so much to me. Down the road of course there will be at least one graduation, and we’re considering enrolling him in equestrian Special Olympics in the future, but right now, Field Day is it.

The singularity of this recognition is not from lack of trying, but more from lack of interest on Justin’s part. We’ve attempted different types of sports through the Challenger program in our town, a league created to accommodate special needs children, but my son has remained immune to the charms of athletics. While I always want him to try new things, I also want him to enjoy participating in the events themselves.

I happen to think his childhood should be about him. I’m old school that way.

So today I’ll capture moments on film that hopefully depict an enthusiastic boy, one happy to belt a ball off a stand set strategically in front of him so that he’s ultimately successful. I will catch my son surprisingly amused by wearing Hawaiian garb as he conducts a three-legged race, and warm to the fact that he constantly looks behind him to make certain his mom’s and grandma’s eyes are only for him. For posterity, I’ll record the instant where my child kicks a ball with gusto into a goal, then looks incredibly bored by the undertaking.

He’s my boy after all. Sports are simply not his thing.

All in all, the day should have proceeded without incident, culminating in a barbecue in which I would predict correctly that my son would only enjoy consuming the carbs. The glitch came when there was a change in routine. It was a major one, an alteration which deviated greatly from last year’s event, when rain became an unwelcome guest who forced the staff to relocate the grilled goods into the confines of the school, and required parents to return after lunch to collect their kids.

This year we had sunshine falling benevolently around us as we consumed our hot dogs and hamburgers, and I wondered how this was all going to end. Due to the great weather this year’s Field Day would culminate in an award’s ceremony, one in which (in theory) Justin would be asked to wait on line with his classmates, ascend a stage, and happily receive his certificate of participation.

After nine years, with waiting still not being his forte, I admit I had my doubts.

True to form, as the last crumbs of white bread made their descent into my son’s stomach he rose, tried to locate a garbage receptacle (he cleans up beautifully after himself without prompting, one of the many things I love about him), and after failing in that endeavor simply plopped his plate back on the table. He then took my camera from me, placed it back in its case, grabbed my hand, and made off for the building adjacent to the one which houses his classroom.

Amidst queries by his aide and my mother of “Does he need to use the bathroom?” and “Is he taking you for a walk?” I inwardly laugh, because I know exactly what this kid is doing, and once again I am amazed at his retentive abilities. Despite having only done this once before it’s clear my son remembers the rules he and mommy must follow to leave the premises, and I comprehend completely why he is heading toward the building that houses the paper I must sign so that we can go home.

And now, the fun begins.

I share this information with the concerned adults around me, and tell Justin to sit down. I explain to him that he has to wait, and knowing it will be at least twenty minutes before his class convenes to accept their congratulations, I remind myself this will not be a relaxing interlude. I am correct in my assumption. And while his grandma gets him to dance for a bit, and his wonderful aide convinces him to sit on her lap for some time, it’s me he ends up with at that picnic bench.

I admit, ten minutes into my son reluctantly perched on my lap, some bruised shins (mine), and wondering if my spine will be permanently fused to that picnic table, I want to give in and call it a day. After all, he participated fully in each feat of strength. He was happy, and engaged in the day. He’s eaten chips and en entire hamburger bun. Up to this point for him, it’s been a win-win.

I look over at my mom after a particularly painful slam from his agitated rocking, and she says, “let him stay”. And while part of me would be happy to oblige with him on someone else’s lap, that annoying “mommy voice” that resides within many special needs parents kicks in, and tells me not to give in. The truth is, he’s getting bigger every day (thank to his dad, not me), and it’s harder to say “no” and stick to it. It would be so much easier to gather my crap and let him lead me to that rushed signature, the one that right now would signify both escape, and failure.

I look again at my mom’s face, and I know right then I’m not giving in to him.

Fifteen minutes and some soon-to-be-colorful spots on my legs later, it’s finally Justin’s turn. His aide leads him to line up in formation before the steps, and I watch as he reluctantly complies. Finally his name is called and he climbs the wooden slats to his reward, one which he regards quizzically, as I knew he would. He accepts my embrace and congratulations, then immediately leads me in the direction of freedom, and release.

I’ve already worked out a plan with his aide, so I blow a hurried kiss to my mom and ascend a new set of stairs. I smile to myself, because this is one more battle won, and it may not seem like a major accomplishment, but it is. There will be many more times he’ll be forced to remain in an environment he won’t find even the least be reinforcing. Some of these outings will occur with me and his teachers. Many more will happen in the decades when he will no longer be under my care, when he needs to understand the rhythm of need and compliance, the give and take of his desires versus the rules of those who will care for him. I needed to do this for him, to show him (for what feels like the millionth time) that once again, “no means no.”

I needed to do this for me.

And as we make our way into the parking lot, he with the ghost of a smile playing at his features and his hand tucked firmly in mine, I know with this particular event, both of us won.

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.

May 24, 2011

Gratitude Attitude

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

This week’s Gratitude Attitude is dedicated to the students and staff of Search Day School, who created and participated in such a wonderful Field Day Event this past week. My hat is off to anyone who can get Justin to enjoy sports, and his little brother was equally excited to cheer him on. Thanks so much for all of your hard work!

June 23, 2010

Have a Field Day

Posted in Life's Little Moments tagged , at 8:20 am by autismmommytherapist

My youngest rolled out the side entrance of his school, trundling along in his wagon, flanked on either side by the other members of his pre-school special education class. As a mom I am excited to see him, grateful to watch his smile overtake his face as he realizes that yes indeed, his mommy is there to watch him perform in Field Day. As a teacher I am wondering why he was chosen as one of two students whose exit from his classroom required a vehicle. Was he a particularly good boy that day?  Did he perhaps ask nicely and was subsequently rewarded with the front-row seat?  Is it just that his teacher is worried that getting him from the exit to the field without running ahead is such an odious proposition it’s just easier to place him in the red plastic receptacle?

I suspect strongly the decision was based on the latter scenario.

Either way, he is thrilled with both his escort and the upcoming event, and he can barely wait until his wagon slows to a stop before he leaps out and runs into my arms. I quickly embrace him, then direct him to return to his class and waiting teacher. He looks me in the eyes and says “Mommy, come”, and in that moment there truly is no other option. I take his hand and walk with him to sit amongst the other children and their assorted parents, and attempt to make him focus on what his teacher is saying, not the fact that his mother is parked next to him. It becomes a losing battle.

I have to admit I find the prospect of redirecting his attention humorous, for just that very morning when I had asked him if he’d like mommy to come to school for Field Day he had responded with a resounding “No, mommy stay home”, which was a tempting command given that our pool had recently been opened. I chose, however, to do the mature thing. Instead of donning my bathing suit I opted to enter my oven of a car in what seemed like mere minutes after he left for school, and nobly attended my son’s end of year event.

Oh, the sacrifices we make.

Of course, despite the allure of chlorinated water there’s nowhere else I’d rather be, particularly as Zachary seems to be enmeshed in a “mommy phase”, mired in what I’m certain will be a brief detour from his permanent residence in “daddyland”. My youngest and my husband have been inseparable from birth, perhaps because his father works from home and Zach has access to him sporadically throughout the day. Perhaps he senses Justin has previously staked out his territory on me, and is not inclined to enter into battle with him over their shared mother. Perhaps, of course, he just likes my husband better. I’ll never really know.

But today my smallest son only has eyes for me, and if I’m completely honest with myself, it’s fun to be the favorite. Throughout the morning I am ordered to assist him in hanging wet clothes on a washline (a chore I’m certain no one on this field has ever witnessed before). I willingly assist him in his ill-fated attempts to negotiate the field while inhabiting a burlap sack, stopping every few feet to place my giggling son upright, an act he continues to find hilarious all the way to the finish line. I encourage him to follow the directions of his well-trained aides as he traverses the grass in zig-zag fashion, heavy-handed with sodden sponges I am hoping he doesn’t release on his teachers. I have to remind him that running to me for a hug in the middle of the obstacle course is not good form, and convince him that my participation in the culminating tug-of-war event is not warranted. I win that battle, as long as I remain within sight of my boy. The negotiations afforded him a win as well.

All too quickly, the feats of strength are concluded. After the requisite photo shoot is completed I approach him, take his hand, tell him how proud I am of him, and remind him he’s going back to school for a bit, and I’m going home. This declaration is not met with a great deal of enthusiasm, and I watch my son avert his gaze from me, and hang his head dejectedly. We walk quietly with his class back to the main building, and when we reach the juncture where his path veers towards the school and mine toward the parking lot I hug him, give him a brief kiss, and tell him I’ll see him soon.

Zachary turns away, grabs his teacher’s hand, and throws his matching limb across his face as he bursts into wracking sobs. Intellectually I am aware that being separated from me for twenty-seven minutes is not indeed tragic, that his reaction is not commensurate with the situation. Emotionally I am the slightest bit gleeful, as I realize how far he’s come in his attachments, his ability to express emotions, even his capacity to demonstrate sadness at separation. A year ago, he wouldn’t have cared that I was leaving, much less that I had been there at all. I would find out later that his tears lasted as long as it took to get him seated for a treat at his favorite table. There is nothing a “grandma brownie” cannot cure after all.

As I head to my car with keys and camera, replete with photos capturing perhaps every moment of the morning, I am struck by this thought. For years I have been attending school events with Justin, strategically anticipating exactly how long I can participate before he decides he has had enough, and that leaving the facility with his mother is a far more reinforcing prospect than spending even one more minute in school. I have chosen on occasion to forego some parties because of his desire for a premature departure, and I have done so with a heavy heart. Sometimes, I just knew he’d get more out of the experience if I wasn’t there.

Today, however, was peaceful. I watched my son fully participate to the best of his ability in a half-dozen athletic exercises, he remained on the field, and listened to directions (more or less). Save for his brief foray into despair at the end of the morning he was nothing but pleasant, compliant, and enthusiastic. There was not one minute of anxiety on my end, no plotting how to circumvent an impending desire to vacate the premises, no angst. He behaved beautifully.

And his mother, for once, just had fun.

Next year, I just might join him in that burlap sack.