May 19, 2014

Never Say Never

Posted in Fun Stuff, Life's Little Moments, My Take on Autism tagged , , , , at 10:32 am by autismmommytherapist

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Justin wanted badly to play a new computer game, my boy.  He grabbed my hand with all the strength his eleven-year-old self could muster and propelled me to the computer, a look of unparalled joy on his face.  I sit down next to him desperately hoping I’d remember how to log-in, as my husband had showed us only once the night before.  I watch as Justin settles into his seat, glances at me briefly as he maneuvers the mouse to google, then types in the word “jumpstart.”

 

Yup, my mostly non-vocal, severely autistic child just found google and typed the word “jumpstart,” and completely independently at that.

 

I watch in wonder as his smile broadens and he glances back at me, triumphant, grabbing my hand to help him play.  He maneuvers the game like an old pro, amassing gems, earning points, achieving victory.  I hold his hand a moment longer, reveling in his enjoyment, amazed but not surprised by his skill.

 

Once again I am reminded to never say never when it comes to either of my children.  They continue to grow and progress at their own uniquely beautiful pace, shattering any limits I might unconsciously impose upon them.

 

And once again, I am so grateful I’m here to witness it all.

 

 

 

 

 

March 18, 2013

The Whole Tooth, and Nothing but the Tooth

Posted in Fun Stuff, Life's Little Moments, My Take on Autism, Uncategorized tagged , , , , , at 9:41 am by autismmommytherapist

Xmas 2012 057

“Mom, I lost my tooth!” my youngest son cries with wonder, a shout coupled with excitement and tinged with a bit of disgust. I run over to the kitchen table and respond “Let me see!”, and indeed, when he carefully unfurls his fingers, it appears the tiny white object nestled in his palm is one that formerly resided in his mouth.

He smiles up at me with his new toothless grin, which I know I’ll come to adore as long as it lasts, and asks me if we can put it under the pillow tonight. I respond with an emphatic yes, and ask him what he’d like the tooth fairy to bring to him. He looks me straight in the eye and answers he wants to go to China.

That’s my boy. No pedestrian quarters for him.

I tell him that although the tooth fairy is quite efficient in her prize dispensing that unfortunately travel agent is not part of her job description, and he begrudgingly knocks his request down to a Phineas and Ferb book, a desire his mother actually can fulfill. He then runs to the bathroom to see the gap where his tooth once resided, touches it gingerly with his finger to see if it hurts.

It doesn’t. Satisfied, he runs back to his seat for lunch, already asking me if we can go somewhere today as his mother simultaneously figures out how she’ll escape to Barnes and Noble before nightfall. Soon he is focused entirely on consuming his lunch, tooth loss forgotten as he regales me with his day in the fast-paced world of kindergarten.

We’ve entered the arena of lost body parts. My little boy is growing up.

There are signs of it everywhere. I see his growth in the way he’d rather struggle to put on his gloves by himself than deign to ask for help. I witness his independence when he pushes his father and me out of the room at bedtime so he can read his last story alone. I acknowledge his progress when he clamors for privacy in the bathroom, an enclave which previously required adult attendance for him at all times. My not-so-little one is intent on figuring it all out for himself, and that’s as it should be.

He’s fine with it all. It’s just his mother who has to learn to adjust.

It’s not that Justin doesn’t strive for independence too. In the past year my eldest son has acquired so many new and important milestones, from completely dressing and undressing himself without prompts, to helping clean up at dinner which requires a number of prompts (I can’t blame him, I don’t like to do it either).

He no longer shadows us constantly, prefers to be with us but not on top of us in a room unless he’s hungry, then all bets are off. Justin’s making his way in the world too, at a different pace and trajectory than the rest of us, but his way nonetheless.

It’s simply hit me that while on some level my firstborn will always need our care, his little brother will not.

I realize that relief is welling in me, threatening to make this an emotional rather than a triumphant moment, and I push it back for later contemplation so I can be here, in the now, with Zach. I can’t stop my mind however from briefly returning to those dark days when he stopped speaking, playing with toys, or interacting with those he loved in any comprehensible way.

He has come so far from that painful abyss, the one in which he resided for such a seemingly endless time. My boy will have choices, although I no longer feel his life will necessarily be more fulfilling than his brother’s.

Zach is forging his own path, one that won’t always include us. To the core of my soul, I am eternally grateful.

He finishes his lunch with zeal and asks to go upstairs and place his tooth next to his brother’s, in the small silver receptacle I received at Justin’s birth. I take it down from its resting place and note that it needs a good polishing (and also note that this probably won’t happen). Zach takes off the lid dramatically, declaring with wide-eyed wonder that his deposit is bloodier than his brother’s, a fact which apparently is quite cool. He places his treasure inside and bounds from the room, already on to his next quest, to best me in yet another light saber duel.

I bet you can guess who will win.

On tippy-toe I replace the tiny teddy bear in its sacred spot, then prepare myself for a battle which will invariably include several stung knuckles. I realize I will have to practice this slow attrition of need, of always being central to his life. It is both a glorious and difficult path.

And one I will gladly walk with him.

June 17, 2012

Time for Kindergarten

Posted in Life's Little Moments, My Take on Autism tagged , , , , at 12:30 pm by autismmommytherapist

We’re almost running late, and since it’s the first time Zach will be meeting his potential kindergarten teachers, I’m silently begging the lights to remain green. It was a bit of a struggle to get him out of the house, no different than many that have occurred over the last week or so. I’m pretty certain his departure in behavior is due to the impending finale of pre-school, a place where he’s laughed and learned with the same incredible staff for two-and-a-half years (at least I hope that closure is the reason). While I sympathize with him, this “tour” that we’re about to take is important, will give him the lay of the land so to speak of a new facility, and will hopefully endear him to his new educators. He needs to get it together.

After all, first impressions are everything.

I arrive in the parking lot with a minute to spare, rush into the building, and am relieved to know we have a few minutes before the “event” begins. Zach’s case manager is wonderful, and has graciously offered to continue attending to his needs next year, a decision for which I am grateful. Since he’s going to have to readjust to an entirely new set of staff this fall, it will be lovely for him to see a familiar face.

It will be lovely for his mommy too.

Eventually our fabulous child study team member comes to collect us, and Zach eagerly takes her proffered hand, and I smile. We start the tour on a high note (the science room, where my son has the opportunity to witness tadpoles and frogs in action), a locale which I quickly see ignites a spark of longing in him, a desire to return.

In quick succession we check out the auditorium, the mainstream classroom and teacher where he’ll hopefully spend his entire morning, and the educator of the self-contained classroom in which he’ll conclude his day. Everyone is so welcoming, and so clearly excited to meet their prospective student. I watch Zach soak up their warmth like strong rays of sun on his skin, and I see the dawning in his eyes of an exciting future. He can’t wait to attend this school.

And although part of me is scared for him, I can’t wait for him to attend it either.

All too soon our roaming ends, with a trip to the boys’ bathroom acting as our finale. Due to our case manager’s thoughtfulness Zach even receives a parting gift of goodies, which he eagerly explores and wants to play with immediately. I temper his enthusiasm a bit by promising him access in the car, thank our tour guide, and offer him my hand.

My appendage is resoundingly rejected. Zach is, after all, going to kindergarten this fall.

I know it will be only one of a thousand ways in which he’ll slowly leave, will exert the subtle shift from dependence to independence that an entire team of people have worked so diligently towards for four consecutive years. He does permit me to grasp his fingers as we enter the parking lot, and I listen as he chatters on enthusiastically about what he’s seen. He’s already spinning me a story about the amphibians he’s obviously taken to heart, one with woods and an evil witch who thankfully doesn’t sound anything like the teachers he’s just met.

When asked, he says he loves his new teachers. Thank God.

I’ve barely strapped him into his car seat when he asks for his “goody bag”, and I retrieve it for him from the front seat, reminding him not to lose the little pieces anywhere. He promises to be good and take care of them, and again I smile, because I know he will do his best, as he does in so many other areas of his life. I squeeze his hand and lean in for a kiss, one which he dutifully bestows upon his mommy, then turns back to his newfound treasure. I release his fingers reluctantly as I ponder how much more difficult this will be in September. Zach gives me his trademark glorious smile, and I close his door, knowing a new one will open for him soon.

It’s time to let go, and watch him fly.

 

 

August 14, 2011

Adventure Trio

Posted in Fun Stuff, Life's Little Moments tagged , , , , , at 8:06 pm by autismmommytherapist


The T rex throws his head back in a gigantic roar, tail sluicing through air at what appears to be a dangerous velocity, at least to my slightly cowering but curious four-year-old. He is safely folded into my husband’s arms, mere feet from eye level with the beast, telling Jeff firmly this dinosaur is “just pretend”, which I believe he whispered more to reassure himself than his daddy. He twists his torso back to me and shoots me a look that implies he can’t believe he’s here, and I return the favor, because I can’t quite believe it myself. The three of us are at Atlantic City’s Showboat Casino “Dinoshore Museum”, which is only one of several adventures this McCafferty trio will be embarking upon today.

Because today, in case you didn’t see it on Comcast or CNN, is the first annual “Zachary Day”.

In the past four-and-a-half years there have been plenty of “Zachary mornings” or “Zachary afternoons”, most of which have occurred because Justin was in a full-day educational program before his little brother was even born. Zach and I have experienced a myriad of day trips together, outings where we’ve conquered my youngest’s sand aversion and trolled the Jersey shore for sea life, or explored any number of the Garden State’s museums. Said excursions, to my surprise, have even included one where I permitted tarantulas to traverse my arm just to impress my kid. We’ve had wonderful pieces of time together, but never an entire day, and particularly never an entire day that included his dad. For years there were too many other pressing concerns to consider, like wondering if any of us would ever get a full (or hell, half) night’s sleep again, or would my oldest deign to eat once more, etc., etc. Day trips to enable Zach to have special time with his parents were not of the highest priority.

But now, they finally are.

I will tell you that some of the joy of this day was seeing my son’s exuberance at learning there’s a place dedicated entirely to the discovery of his favorite hobby, that watching him sift through sand for fossils and marvel at reproductions of monoliths long sent to the grave was an unparalleled thrill. Our ability to sit afterwards with Jeff’s aunt and uncle “of the heart” for forty-five minutes and chat like any other family also seemed miraculous to me, because my son entertained himself, and only asked to go on his next adventure as the full hour came to a close. I could share with you that the highlight of the day was witnessing Zach’s enchantment with the Ocean City boardwalk, that Jersey shore icon which holds a unique place in both his parents’ hearts. I could tell you I simply loved watching Zach revel in its sights and sounds, and the fabulous Thomas the Train ride which wended its way through the amusements at such a height at times it seemed we would scrape the sky. I could tell you these things, and they would all be true.


But if I’m completely honest, the real thrill was a day without the constraints of Justin’s autism, and one devoid of guilt for feeling that way.

Don’t get me wrong. Zach still presents a challenge (he is four, and a boy, after all). He remains mildly on the spectrum, which for him presents as episodes of moderate anxiety, a need for order, and an impulsivity we continue to attempt to reign in without crushing his exuberance for life. He’s made tremendous progress in these areas, but there’s still work to be done. It appears that Jeff and I do not bear the easiest of children, which perhaps is fair, as it turns out we’re not the easiest of adults.

But today, at least for one day, we were able for once to go with the flow, not plan out every move as if we’re negotiating territory on a life-sized chess board. We made spontaneous decisions (!), took our time, and didn’t regard our watches for hours. Zachary adored all of his adventures even without a set plan, adventures that would have been met with varying degrees of disdain and disgust by his brother. My smallest son had his own day, just a day with his mom and dad. I knew his brother was far happier at school with grandma as the day’s chaser, so for once I didn’t question whether or not he was missing out. I reminded myself that it’s important for Zach to have his own time, and that it’s alright not to include Justin in everything. He had his “own time” for four years before the arrival of the interloper. It’s Zach’s turn now, and it’s my turn to finally let myself feel good about it. It was just a day, nothing special in its makeup to most families.

But for us, I know just how unique it was. And Zach, we can’t wait to do it again.

August 11, 2011

Slumber Party

Posted in AMT's Faves, Life's Little Moments, My Take on Autism tagged , , , at 8:24 am by autismmommytherapist

The phone rings, just as I’m trying to decide if I still care enough about the boys of Entourage to see the last season through. My husband fumbles for the remote and grumpily comments, “Who the hell would call us at 10:30 on a Friday night?”, and I just stare at him, because I know exactly who’s attempting to connect with us. I check out the caller ID just to be sure, and it is indeed my mom. I look up at Jeff and say “It’s Grandma”, and I can see for just a fleeting moment he’s forgotten that Justin’s at her house for the night, or at least, that had been the plan. I press “talk”, which is the last thing I want to do at the moment, and listen as my mother tells me my son has literally packed his bags, and clearly wants to leave. She assures me she’ll keep trying, but I know the jig is up. In a few minutes he’ll be yawning as grandma’s car hugs the coast, and he and his new Toy Story suitcase bought specifically for this occasion will make their way home together.

It would appear my son’s first sleepover in six years will end before Letterman.

I have to admit, my first reaction upon returning the receiver to its precarious perch on our coffee table is intense disappointment, infused with a smattering of guilt. Justin has made so much global progress over the last year-and-a-half that I truly thought this staple of childhood, or more accurately, this staple of my childhood, would be available to him now. Over the past year he has learned to sleep through the night (most of the time), and traded temper tantrums for acquiescence (again, most of the time). Due to maturity, and mostly his own desire, the world at large has finally seen the personality I always knew existed at his very core- a happy, joyful temperament. I truly thought he was ready for this. His father thought he was ready for this. His grandma and her partner went to great lengths to ensure this night would work.

But unfortunately nature called, and my son answered. Apparently, upon deeper examination, even a bed with his own spaceship sleeping bag and extra-soft pillow on it is still not his own bed.

For a few moments I am mired in regret, wondering if we missed the window by having him home every night since he was two. Our collective decision wasn’t from a lack of desire to see him slumber elsewhere, trust me. During what I lovingly refer to as the “coma years”, I would have delighted in shipping him off for an evening (or three), but we just couldn’t inflict that particular torture on anyone, and quite frankly, there weren’t a great many offers either. His inability to make it through the night, coupled with his little brother’s regression and subsequent plunge into his own heavy-duty therapy years, forced us to put vacations, or even nights at grandma’s, somewhat permanently on the back burner. We were in survival mode. Pleasure seemed an elusive, unreachable link to our past.

As quickly as these negative thoughts enter my consciousness I banish them back to the dark recesses of my mind, where other thoughts of similar nature reside but don’t see the light of day nearly as often as they used to. I remind myself that our family has done the best we could , given both the circumstances, and the resources, available to us at the time. I tell myself that one aborted sleepover does not mean the next decade (or decades) will require my son to snore solely in his own bedroom. Our impending trips to Hershey Park and Disney are not necessarily defunct, just because my son couldn’t make it in another locale until midnight. I chastise myself to chill out, as I sometimes need to do, because life here is much more manageable, and the future is still ripe with possibility.

I smile, because for years I didn’t feel I had much of a choice in how I perceived the daily events of our life together. Now, thankfully, I feel I do.

What seems like hours later, but in reality is only the length of another episode of our selected HBO drama, I hear the soft slam of a car door on our otherwise silent street. I listen to feet padding quietly up to our door, and Jeff opens it, allowing Justin reentrance to his own domain. I slide from the couch to my knees on soft, yielding carpet, and my boy sees me, eyelids heavy with fatigue, the last remnants of a yawn twisting his face. Justin drops his pillow, and shuffles my way. He drapes his arms over my shoulder, relaxes his lithe form, and literally slumps into my body. I gently ease him down to the floor so we can return him to his discarded pajamas, and my husband bears the weight of him back to his own room. I quickly hug my mom, and head upstairs with sleeping paraphernalia in tow. I make it just in time to see his sleepy but brilliant smile flash briefly, his eyes watching me gleefully as I unfurl his colorful comfort onto his familiar mattress. He snuggles in, and pushes my hand away as I gift him the quickest of kisses. I carefully make my way out of darkness, and into the light.

And it occurs to me, even with these small, still frequent setbacks, this family is finally, and I hope firmly, entrenched in the light.