March 5, 2013

POAC Autism Services Walk-a-thon

Posted in Life's Little Moments, My Take on Autism tagged , , , , , , , , , at 11:05 am by autismmommytherapist

April, Play, Walk 2012 067

I know. Repeats suck.

Today I hope you’ll bear with me however, because I’m going to recycle something I wrote two years ago, a post that is dear to my heart. It’s about POAC Autism Services, and one of their many annual walk-a-thons in which my family participates every year.

This year it will be held on Sunday, April 28th at 12:00 in Blue Claws Stadium in Lakewood, and as usual, I anticipate they will have a stunning turnout. Even if you don’t contribute financially, please consider walking with us that day. If you have a relative, friend, or neighbor who has a child with autism, just your presence and support will make a difference in their lives. Thank you!

“Elmo should go back to Sesame Street, Mommy” says my youngest child as he hunches down in his stroller, in part to avoid the wind whipping mercilessly around the stadium on this early April morning, and in part because Elmo is clearly lost, and therefore should leave immediately. Buster, the Lakewood BlueClaws mascot is here as well, but today Zach is not impressed, wants solely to traverse the gusts making it difficult for me and my mother to even gain entrance into the park.

It’s World Autism Awareness Day, and not coincidentally the first of several walk-a-thons to be held around the state of New Jersey for POAC Autism Services , and it feels more like early March than spring. I am confident a breeze will not prevent anyone from participating in today’s event however, am excited that thousands of people from around the state will be donating and walking for a cause that perhaps has completely infiltrated their lives, and their hearts.

I know it has done so with mine.

As we wheel Zachary through the gates I allow myself a moment of self-congratulation, because we’re here without Justin, and for the first time, perhaps ever, I don’t feel the slightest bit guilty. He would have been upset long before we reached our destination, confused by a trajectory of roads that lead him to an open building with nothing inside that would interest him, although there will be plenty here to captivate Zach.

So, I’ve left my oldest with his father to attend this month’s autism movie.  Jeff later reported almost nobody was there for this showing, so I’m hopeful they all attended the walk. Although Zach has autism as well, the progress he has made has been so stunning I am confident he will one day be able to harness the anxieties and impulsivity that herald his brand of the disorder, in a way in which his older sibling will never be able to do. While I walk for all children on the spectrum, my primary motivation will always be for Justin. I’m sad he won’t be participating with us today, but I know he’s in a happier place.

Hopefully, Jeff is too.

As my little family of three wends its way through the crowds I spend a few moments taking it all in, the people ensconced in boldly colored t-shirts proclaiming their love for someone on the spectrum, the vendors and sponsors with their brochures and enticing crafts for little hands. I can only imagine how much planning it took to create this day, what combined effort and expertise went into an event of such magnitude.

Every face I walk by seems cheerful, from those hawking autism “accessories”, to those preventing an unhappy child from a meltdown in the stands. There is a palpable aura of peace here, of parents stripping away the confines of an often harrowing existence, and simply reveling in a day, worldwide, about us.

And with all due respect, I kindly assert we deserve it.

In what seems no time at all Zach conquers three moon bounces, a playground, and a multitude of crafts, and it’s time for the exercise portion of the day to commence. Gary Weitzen, executive director of POAC, descends to the bottom of the stadium to address the crowds, and it seems as if even those children and adults who are vocally stimming quiet a little, are loathe to miss a word.

He speaks of his gratitude to everyone who contributed both physically and financially today, to those who continue to underwrite an organization which is the largest provider of free autism trainings in the entire state. Reference was made to an impressive figure raised that almost hit the six figure mark, and may yet do so before the month is through.

Gary cheerfully reminds the crowds of all POAC Autism Services does for families who might otherwise have limited recourse to recreational activities, always for no cost. And after a stunning rendition of Christina Aguillera’s “Beautiful”, we are free to walk, to continue to take steps in the right direction to heal our children, our community, and our hearts.

I pause for a moment before we begin the sole loop my family will participate in today (a four-year-old has his limits with philanthropy), and as the sun slips over an awning that previously provided shade I am required to squint to take it all in, to view the masses moving in quiet solidarity around the circumference of the field.

There are spaces of course, but as I remain still, I notice that slowly, steadily, they are being filled, as some teams lag behind, and others proceed at a quicker pace. I know if I stood here long enough I’d behold one great, cohesive circle of commitment, seamless in its synchronicity of volunteers, parents, children, teachers and therapists, all striving mightily to fill the gaps.

And filling the gaps is exactly what POAC Autism Services has done so beautifully for well over a decade now, and I’m certain will continue to do so for many more to come.

Zach looks up at me impatiently, imploring me to return to the relative warmth of my car and take him home for lunch, and I concede to his desires. I take one last look back from the threshold of the stadium, and am rewarded by a thinning of space, of the blankness between what has been offered to our children, and what should be provided to them.

I am so grateful this organization has stepped up to help erase those voids, so appreciative of all those who made it possible to be here today. Once again, we find ourselves a part of a community who cares. And I am reminded anew of what Gary so eloquently communicated to us all at the POAC Gala, mere weeks ago, in his welcoming speech.

We are family, indeed.

Check out POAC Autism Services on their website at:  http://www.poac.net

July 29, 2011

What’s Your Point?

Posted in If You Need a Good Laugh, Life's Little Moments tagged , , , , , , , , , , , , , at 11:28 am by autismmommytherapist

I noisily slurp my deceptively delicious frozen strawberry lemonade, a new concoction from McDonald’s (who knew the golden arches could corner the market on this summer’s most fabulous non-alcoholic beverage?), and take in the scene before me. It’s a familiar seasonal tableau, as my family of four often comes here to “dine” when on a Great Adventure outing, and I think the familiarity of the routine keeps everyone peaceful and calm. Zach is ignoring the ham we brought with us in deference to his GF/CF diet, and is playing seriously with Justin’s happy meal toy. My husband is scarfing down what actually looks like a fairly edible chicken sandwich, and Justin is contentedly watching Cars on his CD player while eating the fries I’m surreptitiously stealing from him. All is right, and “normal” for us, in the kingdom.

And then, my oldest boy points.

There was a time when my heart would have leapt into my throat with joy, along with the alluring thread of hope that this common way to communicate needs was leading up to a “breakthrough” for my son, a transition from his world, to mine. When he was diagnosed with autism at seventeen months, and had barely made the switch from infancy to the realm of toddlerhood, the necessity of teaching him how to point was drummed into me over and over by the vast majority of the professionals comprising Justin’s therapy team. Again and again I would hold his tiny hand, elongate his sweet pointer finger, carefully fold the remaining four into a gentle fist, and aim. He was supposed to be demonstrating this integral skill not only to convey his needs, but in order to share something of interest to his parents, his grandma, or just his babysitter.

The latter concept was called “joint attention”, a pivotal requirement for typical development in early childhood. I shaped those five digits frequently during those first years in the hope the desire to show us anything would “catch on”, but honestly, it rarely did. I do have one such encounter relegated forever to the digital world. It is a slightly shaky few minutes of film in which I recorded Justin sitting on Jeff’s lap pointing to the vibrantly portrayed animals in Eric Carle’s The Very Hungry Caterpillar, my son laughing gleefully as my husband recited each mammal’s name no matter how many times Justin referred to said animal in a row. Soon, even the desire to engage in that game dissipated too, and my son began to rectify his needs through PECS, his Springboard, and ultimately, his iPad. He found a way to engage us in his joy as well by simply using his eyes, not his finger, to showcase his discoveries. All in all, these methods have worked for him, and for us.

But today, he is pointing. It is a gesture preceded by a downward glance of disgust at his chicken nuggets, followed by a look of undeniable longing toward my husband’s poultry selection, and capped off with a “finger chaser” in case there are any doubts as to his desires. His emotions are so unusually readable on his face that Jeff and I have to laugh, as there is no confusion as to what he desires, and I know my spouse will be heading back to that frenzied food counter momentarily to repurchase his own lunch. In good father form he breaks off a bite-size piece, and my son is eager in his acquisition, almost inhaling the slice before Jeff can change his mind. He swallows, and we watch the mere hint of a smile cross his face as he imperiously extends that pointer finger again.

And I have to laugh once more, because this interchange is just so damn “normal”.

There have been a number of these moments in the last few weeks as I’ve entertained the two kids on their summer school/camp hiatus, and they are wonderful to see. One morning, well before my other two boys surfaced from slumber, me and my eldest constructed an Elmo fire station from Legos, mommy pointing at the photo on the box, and son locating the plastic piece and constructing the building from scratch. Two evenings later, Justin grabbed my youngest as he enacted his nightly bedtime ritual of hugging his big brother goodnight, pulled both boy and book into his bed, and regarded me with a look that left no doubt they’d be receiving their bedtime story together.

Fortunately, Velveteen Rabbit was a crowd-pleaser.

To tell you the truth, I’m pretty exhausted on this “time-out” from routine, and I’m only two-thirds of the way through. But I’m glad I’m witness to these fleeting moments, happy to participate in this minute foray into typical. Justin’s truly beginning to interact more with the world, his teachers, his sibling, even strangers who grace his path. It’s not earth-shattering progress, but it makes life so much easier for us all.

And that’s a concept I’ll take with me until that glorious first day of summer school.

April 6, 2011

POAC Walk- World Autism Awareness Day

Posted in My Take on Autism tagged , , , , , , , , , at 9:16 am by autismmommytherapist

“Elmo should go back to Sesame Street, Mommy” says my youngest child as he hunches down in his stroller, in part to avoid the wind whipping mercilessly around the stadium on this early April morning, and in part because Elmo is clearly lost, and therefore should leave immediately. Buster, the Lakewood BlueClaws mascot is here as well, but today Zach is not impressed, wants solely to traverse the gusts making it difficult for me and my mother to even gain entrance into the park. It’s World Autism Awareness Day, and not coincidentally the first of four walk-a-thons to be held around the state of New Jersey for POAC Autism Services, and it feels more like early March than spring. I am confident a breeze will not prevent anyone from participating in today’s event however, am excited that thousands of people from around the state will be donating and walking for a cause that perhaps has completely enveloped their lives, and their hearts.

I know it has done so with mine.

As we wheel Zachary through the gates I allow myself a moment of self-congratulation, because we’re here without Justin, and for the first time, perhaps ever, I don’t feel the slightest bit guilty. He would have been upset long before we reached our destination, confused by a trajectory of roads that lead him to an open building with nothing inside that would interest him, although there will be plenty here to captivate Zach. So, I’ve left my oldest with his father to attend this month’s autism movie (Jeff later reported almost nobody was there for this showing, I’m hopeful they all attended the walk). Although Zach has autism as well, the progress he has made has been so stunning I am confident he will one day be able to harness the anxieties and impulsivities that herald his brand of the disorder, in a way in which his older sibling will never be able to do. While I walk for all children on the spectrum, my primary motivation will always be for Justin. I’m sad he won’t be participating with us today, but I know he’s in a happier place.

Hopefully, Jeff is too.

As my little family of three wends its way through the crowds I spend a few moments taking it all in, the people ensconced in boldly colored t-shirts proclaiming their love for someone on the spectrum, the vendors and sponsors with their brochures and enticing crafts for little hands. I can only imagine how much planning it took to create this day, what combined effort and expertise went into an event of such magnitude. Every face I walk by seems cheerful, from those hawking autism “accessories”, to those preventing an unhappy child from a meltdown in the stands. There is a palpable aura of peace here, of parents stripping away the confines of an often harrowing existence, and simply reveling in a day, worldwide, about us.

And with all due respect, I kindly assert we deserve it.

In what seems no time at all Zach conquers three moon bounces, a playground, and a multitude of crafts, and it’s time for the exercise portion of the day to commence. Gary Weitzen, executive director of POAC, descends to the bottom of the stadium to address the crowds, and it seems as if even those children and adults who are vocally stimming quiet a little, are loathe to miss a word. He speaks of his gratitude to everyone who contributed both physically and financially today, to those who continue to underwrite an organization which is the largest provider of free autism trainings in the entire state. Reference was made to an impressive figure raised that almost hit the six figure mark, and may yet do so before the month is through. Gary cheerfully reminds the crowds of all POAC does for families who might otherwise have limited recourse to recreational activities, always for no cost. And after a stunning rendition of Christina Aguillera’s “Beautiful”, we are free to walk, to continue to take steps in the right direction to heal our children, our community, and our hearts.

I pause for a moment before we begin the sole loop my family will participate in today (a four-year-old has his limits with philanthropy), and as the sun slips over an awning that previously provided shade I am required to squint to take it all in, to view the masses moving in quiet solidarity around the circumference of the field. There are spaces of course, but as I remain still, I notice that slowly, steadily, they are being filled, as some teams lag behind, and others proceed at a quicker pace. I know if I stood here long enough I’d behold one great, cohesive circle of commitment, seamless in its synchronicity of volunteers, parents, children, teachers and therapists, all striving mightily to fill the gaps.

And filling the gaps is exactly what POAC has done so beautifully for well over a decade now, and I’m certain will continue to do so for many more to come.

Zach looks up at me impatiently, imploring me to return to the relative warmth of my car and take him home for lunch, and I concede to his desires. I take one last look back from the threshold of the stadium, and am rewarded by a thinning of space, of the blankness between what has been offered to our children, and what should be provided to them. I am so grateful this organization has stepped up to help erase those voids, so appreciative of all those who made it possible to be here today. Once again, we find ourselves a part of a community who cares. And I am reminded anew of what Gary so eloquently communicated to us all at the POAC Gala, mere weeks ago, in his welcoming speech.

We are family, indeed.

POAC walk-a-thons 2011

January 17, 2011

Do Tell

Posted in My Take on Autism tagged , , , at 7:34 am by autismmommytherapist

SPLASH!!  I feel the briefest moment of warmth as the contents of our tub land on the back of my calves, and I turn around just in time to see my youngest’s son’s grin as he watches his older brother sluice soapy water out of his eyes. Moving two feet over to the edge of the tub to admonish Zach to be more careful, I of course then step directly into the puddle left in the wake of my child’s enthusiasm. I tell Zach to watch what he’s doing, and call to my husband to oversee their horseplay as I clearly require a wardrobe change. After making sure Justin’s alright, I step into the hallway to grab a pair of dry socks from the laundry pile, the one (in theory) I should have put away yesterday.

I rescue my appendages from the icy apathy of our bathroom tiles (oh, to live in a world where our powder room’s floor was heated), and return in time to see my husband head to the stairs to claim Zach’s forgotten bedtime juice. My boys are happily engaged, Justin looking into his sibling’s face and smiling, Zach grabbing his feet and tugging on them playfully. He gets a bit rough at one point, and I remind him that these appendages are indeed attached to the rest of his brother’s body, and he should take care not to hurt him. Zach drops his prizes and fixes me with his slate-blue stare, and says (with what I swear is a hint of condescension), “He likes it.”

I fix him back with my own slate-green gaze and respond, “How do you know that, exactly?”

Without breaking eye contact, Zach replies “He told me.”

Really. Five minutes with Justin in the bathtub, and you’ve managed to conquer his severe apraxia. And I thought I was the Annie Sullivan of autism.

I know from reading those child development books, the ones that actually apply to one of my offspring, that lying is a good thing in a three-year-old, implies access to an imagination, and a penchant for guile that are all considered “normal” for the pre-school crowd. I decide to play with this a bit and consider asking Zach what Justin’s opinions are on global warming, but instead I scale my query back to ask him what else my eldest has said to him lately.

He smiles up at me, oh-so-innocently, and says, “Nothing”.

Great. Five figures worth of  speech therapy over six years, you get him to talk, and that’s all I get?

My husband has returned from rescuing Zach’s Elmo juice, and I fill him in on their “breakthrough moment”, and we both laugh and wonder what Justin will “tell” his brother in the future. Together we finish the bathroom routine, wrapping towels around warm little bodies, soothing them (hopefully) into slumber. Eventually, after several stories and five requests of “stay and sing to me, PLEASE!!!” we are able to exit Zach’s room, and begin the next portion of the day, the one where Jeff works and I hope it’s the day of the week Cupcake Wars is broadcasted.

I head downstairs and start the post-afternoon clean-up, but I can’t seem to get our family discussion out of my mind. Zach has never asked us questions about Justin, why he doesn’t talk, why “e”is his favorite vowel, why his organizational and technological skills are far superior to those of his mother. I’m guessing it’s because he is the younger child, and for the entirety of his life, this has been the only brother he’s known. His relationship with Justin is his version of “normal”.

I am aware my husband and I still have many hurdles left to conquer, one being how to explain Justin’s autism to Zach, and the second being how to explain Zach’s autism to him. While I respect anyone’s decision as to full or partial disclosure in a situation like this, I do feel strongly that we will tell our youngest about his own version of the disorder when the time is right, will explain it to him as best we can. There are some families who do not go the way of full disclosure, instead go to great lengths, even moving to different school districts, to prevent their “recovered” or mainstreamed child from knowing what they have, or in some people’s opinions, had. Again, I respect each family’s right to handle this dilemma as they see best. This is an intensely personal decision. I personally, however, am not a big fan of secrets, and even if I were, I don’t believe we really have that option in this family.

While controversy still rages as to whether or not autism is purely genetic, environmental, or a mixture of both, I think it’s pretty clear our collective family tree had something to do with both boys residing on the spectrum. There has to be  some kind of genetic component involved, and whether Zach mainstreams or not, he needs to know that autism is a part of who he is, if only because he might have his own family one day.

And if Jeff and I do our job right, he’ll be at peace with it.

I’m not sure how to explain his brother’s journey to him however, why autism’s manifestations turned out so differently for Justin than they did for Zach. I don’t know when he’ll start asking us questions about why his brother doesn’t really play with him, or despite his claims, talk to him in any true fashion. I am certain that when he does start inquiring, unfortunately, I won’t yet have the answers.

I am so grateful, however, that I will be able to reassure him how much Justin loves him, will be confident enough to cite examples of his affection toward Zach that a young child might not recognize. I hope it will be a comfort to him to know that Justin used to wait outside his door when he was an infant, wishing we’d let him in just to peek and see that his little brother was still there. I will remind him how Justin stared sweetly at him so often in the bath, and that his elder sibling was always so amused by his pretend play. I will instill in him the memory of Justin’s hand placed gently on his cheek at least once or twice a day, touching base with his sibling, making an unprompted effort to forge that connection.

And I hope, boy do I hope, that proof of love will be enough.

December 19, 2010

The Santa Clause

Posted in If You Need a Good Laugh, Life's Little Moments tagged , , , , , , , , , , , at 9:09 pm by autismmommytherapist

Last week my husband came downstairs, grabbed a diet Dr. Pepper and some GF/CF Swedish fish that are supposed to be Zachary’s, and proclaimed that something momentous had just occurred. No, Bristol Palin didn’t win Dancing with the Stars the night before (NOBODY puts Baby in a corner). No, he hadn’t discovered his impending end-of-year bonus check would cover not only  Christmas, but those insanely expensive “sexy boots” I’ve been eyeing online for weeks now. And no, Justin didn’t recite the Pledge of Allegiance or sing “Pants on the Ground” to him before he got on the bus this morning. The truth is, I’m referring to a far more modest miracle, one that has a direct impact on our family.

Mall Santa is in the house.

Due to the fact that my kids have special needs, they will each have approximately 5,000 opportunities to meet and greet with Santa this year. There’s the Challenger party, the Elks bash, and a wonderful little shindig near our local aquarium that includes not only his Jolly Lordship but FREE CANDY (you all SO know I’m going to that one). There will be multiple chances for Justin to look bored and fix me with his infamous “REALLY mom?” stare, and for Zach to let his eyes well up with tears in such dramatic fashion that any soap opera star would be proud. We’ll attend as many sightings as we can, but for me the big kahuna, the “REAL” Santa, will always be the portly dude smelling slightly of nicotine, situated somewhere between Macy’s and Victoria’s Secret, just like when I was a kid.

Hell, I gave birth. It’s my God-given right to use my children to relive some of my childhood, isn’t it?

After Jeff made his pronouncement we both ignored the fact that it was still November, that in Zachary’s terms we hadn’t even “put away” Thanksgiving yet, and whipped out our planners (yes, my husband’s is electronic, and I still use a slate and chalk). I remembered Jeff was taking the day before the holiday as a vacation day, and since both kids had half days then we figured we could get them off the bus, throw on their “pretty” clothes, and drag them to the car before they knew what had hit them.

I assumed Zach would be enthralled with the idea as Santa is all he talks about these days, and Justin would tolerate the trip as long as he got a bagel at Starbucks and a ride on the faux roller coaster our local mall houses. Since both of their parents would be there, we figured one of us could save Santa’s beard if Justin was not excited by our choice of outing (my eldest child is not a big fan of facial hair), and if we had to spirit him away Zach could still regale his idol with his Christmas list (and a long, long, list it is). We finalized our plans, I ripped the remainder of Zach’s treats out of my husband’s hungry hands, and began to anticipate how excited my little guy would be when we told him his Santa sighting would be tomorrow. I also reminded myself to have patience when he asked me 500 times if it was “tomorrow yet”.

The next day dawned, and Zach of course remembered our plans for the day, even trying to “reason” with me that Santa would rather see him first thing in the morning, so he should not go to school. I didn’t have the heart to tell him Santa was either asleep or on Stair Master at this hour, so I fibbed and told him Rudolph had a cold, he’d been delayed, and we’d have to wait a few hours.

It turns out lying to your kids is really fun.

After a few more years (hours) of bargaining I finally got both boys off to school, had a taste of a “life”, and packed the eight thousand items necessary for our field trip to shopping mecca. What seemed like five minutes later I heard the “beep,beep,beep” of the bus backing up as it overshot our driveway, and I rushed out with excitement, expecting to see an ecstatic boy launch himself into my arms and yell “it’s tomorrow Mom!” with glee. Instead, I watched as Zach’s exit required the assistance of the aide for the entire length of the bus, culminating in a stand-off at the top of the stairs as he refused to grip the safety handle. When I asked if he’d had a bad day he simply uttered a “HARRUMPH!” complete with crossed arms, proclaimed himself a “BAD BOY!!” without a hint of remorse, and reluctantly lowered himself onto the asphalt and trudged his way back to our home.

Ho.Ho.Ho.

After five minutes of witnessing our youngest child engaged in a snit that made my worst PMS episodes look tame, Jeff and I contemplated canceling. I then broached the subject with Zach and was met with a cascade of tears that would have made Niagara Falls proud, and since we’d promised him, we sucked it up and said we’d go. I had a feeling we would deeply regret our decision.

I was right.

We placed both boys in the car, and Jeff quickly found some Christmas carols on Sirius. I relaxed a bit in the driver’s seat, somewhat secure in the knowledge that Zach loves any form of transportation, and whatever tirade he was immersed in would probably disappear within minutes of playing “Look for Christmas Crap” (yes, I leave out the last word when I refer the game to him). The Chipmunk song was just ending (thank God) and Taylor Swift was about to commence a lovely rendition of “Oh Holy Night” when I heard “HARRUMPH!” again from the back seat, and looked back in time to see the crossing of the arms that means that good times are to come.

Here are the transcripts from the next few minutes in our car. Nobody will be subpoenaing them any time soon:

Mom:  “Zach, do you want to sing a Christmas song?”

Zach:  “NO, NO CHRISTMAS SONGS, THEY’RE TOO SLOW!”

I figure I can beat him at this game. I’ve got forty-plus years of Christmas carols on the little bugger after all.

Mom:  “How about Jingle Bells then?”

Zach:   “NO, THAT’S TOO FAST!”

Of course it is. Stupid, stupid Mama.

Jeff, trying valiantly to change the subject, chimed in “Zach, are you excited to see Santa?” and was rewarded for his efforts with “NO, I DON’T WANT TO SEE SANTA, I’M A BAD BOY’, which at the moment, is the whole truth and nothing but the truth. Because we’re already annoyed with ourselves for trying this trip anyway we decide to play with him a bit, see if we can cajole him out of this foul mood, and amuse ourselves in the process. Since I’m not sure we’re going to make it to Starbucks I realize this might be the highlight of my day.

“Zach, want to see Rudolph?”

“NO!!!”

“How about Donner, Blitzen and the rest of the reindeer posse?”

“NO!!”

“How about Elmo?”

Pause, then “NOOOO!”

“Conan?”

“NOOOO?”

“Clooney?” (hint, that one was mine).

“NO,NO,NO!!!!!!!!!! (he may not be my son).

We eventually made it to our destination, and true to form Justin blithely ignored St. Nick and tried to abscond with most of the fake presents surrounding him, and Zach displayed almost as much desire to sit with Santa as he does when confronted with his potty seat. I won’t get my fabulous photos this year, but I’ll leave you with a far more festive group of pictures from “happy Christmas past”.

And to all of you going to see “Mall Santa” this year, please don’t forget to mention I, however, have been a very, very, very good girl.

October 15, 2010

Potty Planning

Posted in Life's Little Moments tagged , , , , at 6:14 am by autismmommytherapist

“No way, the potty is closed!” Zach cries as he runs into the living room, my middle-aged ass trying desperately to catch up to him. “No hon, it’s open for your business” I yell at his retreating back, moments before I finally manage to corner him between the couch and the chair. “BUT I DON’T WANT TO GO ON THE POTTY!!!!” he informs me in no uncertain terms, and I realize if we’re to keep true to our “every half-hour potty training protocol” I’m going to have to carry him bodily to the toilet, kicking and screaming as we go. This is not exactly how I envisioned our two-hour break between pre-school and nap to go today, but since I’ve already been through this once with the other kid, the one who took over a year to train, I find myself oddly unmoved by his pleas. Sadly, for Zach, I used up all of my “potty empathy” on his older brother. He’s just going to have to suck it up.

They say all kids are different, and this adage is certainly holding true when it comes to my sons and their spectrum issues, even down to good old pee pee on the potty. When Jeff and I went through this years ago with Justin he showed no fear of releasing his waste to the porcelain god, just an utter disdain at the thought that he was required to make any kind of effort in the removal of his bodily fluids. Frankly, he would have been perfectly happy to have me wipe his ass for the remainder of his life, and there was a period of time when I thought that was exactly what was going to happen. Justin’s issues with the bathroom centered around pure laziness, an unwillingness to relinquish a toy or a moment with his DVD player that he could never get back. He was simply being stubborn about learning a new skill.

Can’t imagine where he picked that up.

My youngest, on the other hand, seems to be terrified of the entire concept. And yes, we read Elmo Goes on the Potty beforehand. We’ve had him cheer for Justin’s peepees and poopies for the last year, even allowed him to flush them away, a treat which satisfies him to this very day. He has a reward system of his choosing in place, one in which the child only has to sprinkle the pristine surface of the toilet water on three separate occasions to get his coveted prize, a new Halloween book (yup, he’s my son). We’ve already aborted this mission once in the spring when he had just turned three (and his poor pre-school teacher was changing sodden clothes five times a day), and I am determined that this time we will stick it out, AS GOD IS MY WITNESS. So far, he’s emulated his brother completely, staying completely dry at school, urinating once in the toilet just to show off, then returning home.

Yes, home, where for the last week I’ve run through three detergent bottles in as many days. I’m so thrilled to put the children of Tide’s employees through college this fall.

I have to admit, when we did this with Justin we had moments of real despair, knowing that although it’s the exception and not the rule, there are adults with autism still in diapers. Apparently, mastering the art of the potty has nothing to do with how intelligent they are, so the fact that Justin was reading at three was no clear predictor of whether or not he’d require Depends. It took thirteen months (but who’s counting) to get him to a semi-independent place in the bathroom, and I have never been more relieved than when his clean clothes finally began to outnumber his dirty on a daily basis. I believe I actually did a happy dance.

No, you will not see it on YouTube.

The truth is I’m much more inured to Zach’s angst because we’ve been successful once before, he is fairly easy to cajole out of terror, and because I’m pretty certain the allure of a Tyrannosaurus Rex Halloween book will outweigh his fears eventually. That, coupled with the fact that I’m also certain he has a thing for blonds and won’t want to be dating in diapers, gives me hope that this child will conquer this skill too, and hopefully before Halloween 2011. Perhaps I’m being premature, but I swear I saw a slight grin through his tantrum the other day when he thought I wasn’t looking, and the giant smile he sported when he finally did tinkle in the appropriate receptacle could not have been faked. I may be going out on a limb here, but I believe, OH I BELIEVE, my diaper days are numbered.

But if you hear loud screams from central Jersey in the next few months, you’ll know I was wrong

August 18, 2010

Sunny Day

Posted in Life's Little Moments tagged , , , , at 6:25 am by autismmommytherapist

“Play Sesame Street with me!” Zachary entreated Justin’s receding back, as my oldest child decided to take another lap around our house with his DVD player in hand. My youngest did not seem even slightly dejected by Justin’s refusal, and instead trotted eagerly back to his playhouse, where Elmo waited patiently on the potty and Ernie was hanging precariously off his bed, moments away from a second story fall and a guaranteed hip replacement. To be perfectly honest, it’s dinner time, and in most instances I would have let this moment pass as my hands are immersed in chicken guts and both kids are actually entertaining themselves, but this time I just can’t let the opportunity slide. Besides, I’ve surpassed my daily allotment of dark chocolate this afternoon, and the caffeine high has given me an extra energy boost. I wash my hands carefully to dispense with any threat of salmonella, and march determinedly after Justin. Today, by all that’s holy, my kids are going to play house together for seventeen consecutive seconds if it kills me, AND I’m going to catalogue the moment on my digital camera. I dare anyone to try and stop me.

Justin regards me slightly quizzically as I lead him back to the playroom, but he’s used to me forcing him to do things outside of his comfort zone, so he’s really not all that surprised by my actions. I slip the DVD player out of his hands and tell him I’m going to charge it, then settle him next to his brother on the floor, introduce charger and player to one another, and dash for the camera. Most of the time Justin would already have abandoned the endeavor in order to secure his back-up player, but for once he’s remained stationary, and Zachary is beaming. I look down at the peaceful tableau from my vantage point on high, watch Justin disregard Zach’s gaze as he informs his older sibling as to the main players’ names, but I can tell that the lack of eye contact is irrelevant to Zach. Justin is casually twirling Bert in an arc that surely would render any human utterly seasick, but he remains plastered to the floor, hip and shoulder brushing up against my last child’s torso, content.

Zach has dubbed Bert with a new name, “Bert Mommy”, and I watch as his skinny friend bosses Elmo around and tells him to hurry up on the potty. I relieve myself of the necessity of examining how mean Bert Mommy sounds, and instead depress the shutter on my camera, and record their interaction before  Zach’s inevitable clamor to “SEE IT!”  I notice Justin starting to sidle away from the scene as I lower the instrument, but I am just happy they’ve had this moment together, that they are beginning to have them more frequently, and that they sometimes occur without my maniacal prompting. I am amazed, every single time, at how immensely gratifying it is to simply watch my sons play together, how grateful I am that these moments exist at all. I am aware not all families in our situation are so fortunate.

And as I return to my kitchen and my waiting chicken innards, I first stop for one last hit of chocolate, because if this doesn’t warrant celebration and the support of my cocoa addiction, I don’t know what does.

April 28, 2010

In the Brotherhood

Posted in Life's Little Moments tagged , , , at 9:54 am by autismmommytherapist

The stars aligned for us on Saturday, and with much coveted assistance from Grandma, Jeff, myself and Zachary were able to take part in Autism Day at Sesame Place. I managed to eliminate my guilt at leaving Justin home with my mother and his therapist, admonishing myself that he would regard the rides with disinterest, and find Elmo’s Broadway attempts childish at best. I also reminded myself that the last time we had come to Sesame Place a few years prior the crowds were prodigious, which meant the wait for any activity was lengthy, which in general is not a positive aspect of any outing with an autistic child. So we left Justin home, with mild protests at our departure, and took Zachary on what we realized was his first real adventure without his brother in tow.

It was, as much as any outing can be with a young child, a perfect day. Zach, who usually clings to me for dear life on any amusement, reveled in the experience of being a flying fish, and even resisted exiting Elmo’s caterpillar ride when he vociferously protested it had ended prematurely. At first he was terrified of life-sized Cookie Monster, but he eventually allowed his obsessed mother to get a photo op with the fuzzy carbhound, and later warmed up to Ernie and Bert with relish. He waited patiently in line for the Elmo extravaganza, and wasn’t too riled up when his favorite monster made a fairly late debut. He even tried his first public potty, although he informed me politely that “the pee-pees weren’t coming out today”. Nothing, after all, is actually perfect.

Perhaps what was truly perfect for Jeff and me however was not what occurred that day, but what did not. The absence of angst, of trying to time rides perfectly for Justin, of waiting just long enough to get a seat at Elmo’s show but not long enough for his parents to require valium, was in itself a fourth and welcome companion for Jeff and me. While I love taking Justin places, and am grateful I can and am proud of him (most of the time) for his public behavior, there is always that constant worry, particularly now that he’s more than half my weight, that I won’t be able to subdue him if events are not to his liking. When we took Justin to Sesame Place years ago that hadn’t been our concern, as my husband could certainly overpower a four-year-old. Frankly, it was really that if I made the effort to schlep my family to Pennsylvania at 8:30 on a Saturday morning I wanted my child to behave long enough to see the damn Elmo show. I have my standards.

So I’ve come to realize, that although my children are less than four years apart and are the same gender, that sometimes, separate is required. My younger brother and I are the same distance apart, and for two children of identical genetic heritage, could not have been more outwardly different in their demeanor. In terms of birth order I was the oldest, the book-smart goody two-shoes (I remain inordinately fond of that little girl, may she rest in peace). My brother did well in school also, but primarily excelled at sports and music. He eventually became a self-taught heavy metal guitarist, and ended up being the only person I know who chose his career at ten and is actually still thriving at it almost three decades later. At the time, when we were firmly entrenched in childhood, we seemed to share little in common other than blond hair and DNA.

As children we either fought often or studiously ignored one another, which may have stemmed from the fact that he was (in my unbiased opinion) relentlessly bull-headed. Our animosity might also have its origins in my initial impressions of having a boy in the home. I can actually recall my father telling me with great enthusiasm that I had a little brother, as I sat on the floor at my grandparent’s house performing the time-honored sacred tea party ritual with my preferred dolls. I specifically remember grunting acknowledgment that I had heard him, asking when my mother would return, and ordering my grandma to give me a cookie. I also distinctly remember being disappointed I wouldn’t have a little sister to boss around, as I excelled at this with the rest of the extended family with whom I was fortunate enough to live. My father and grandma were excited, but I just couldn’t see what all the fuss was about.

He never did like my tea parties, and stopped allowing me to dress him up when he was two. Despite our differences we later became united in our disdain for what we considered our parents’ arbitrary rules, and pushed each other to test the limits as often, and as surreptitiously, as possible. He brought out my irreverent streak, for which I am eternally grateful. I, in turn, tempered his impetuousness with a reverence for not being caught at naughtiness. Perhaps that bond allowed us to circumvent our differences, for as adults, we are good friends today. My little brother is usually the first person I call when something occurs in our family, and we have inside jokes I can’t explain to any other living being. We are, in a somewhat more mature manner, still partners in crime. I imagine when I’m at the end of my life he will be the person who’s known and loved me the longest. I’ve discovered that counts for a lot.

And I wish this desperately for my boys, this communion my brother and I now share. I even wish them some animosity, for those crucial lessons that can be learned from siblings, the sharing, the tolerating, even comprehending that equal is not always fair. While they will most likely have separate interests, particularly as my oldest son’s seem to be limited to movies, faux laptops, and animated animals that spin and sing, I continue to be hopeful I can contrive moments and activities Justin and Zachary can also partake in together.

We’ve been graced with these moments over the course of the last three years, and I’ve zealously recorded them on video or with my digital camera for posterity. There is the shot I have of Justin after he scaled Zachary’s crib to examine his singing monkey toy, which resulted in a delighted infant grabbing his older brother’s hand and squealing with joy at his unexpected visitor. I have priceless footage of the two of them engaged rapturously in an Eric Carle colorforms activity, an event which not only brought the two of them together in a united reverence for the author’s work, but forced them to practice turn-taking with each other. I have photos of the two of them as bookends to my storytelling, snuggled safely up against me as I regale them with a childhood favorite, watching each child point on demand and “show” each other a pivotal plot piece. They are mostly separate in their endeavors, but we are witnessing more of these unified moments, and I am getting more creative at constructing them. This is a learning curve for me, as well.

But for once, this Saturday, I need summon nothing, for my family is ending our jaunt at Justin’s horseback riding lesson, something we have not done as an ensemble group before. When we arrive Justin is mid-way through, and I send my husband in first to witness his son’s riding acumen. Jeff is rewarded by a curious, then satisfied smile.

A few minutes later I enter the arena with Zachary, as Justin begins to round the bend and will momentarily be in our line of sight. My youngest points and declares “that’s my brother!”, which results in my oldest child whipping his head around and registering that now his father, mother, brother, and grandma, his most cherished, are all in one place to pay attention to his achievement. He beams, sits up a bit straighter in the saddle, and continues to regard Zachary as he completes his elongated oval. There is recognition of one another, brother to brother. There is acknowledgment, and pride.

The lesson soon concludes, and a short time later we conclude the day’s adventures. As we near home Zachary orders his parents to laugh, and as we are his puppets, so grateful are we for his facility with spoken language, we heartily comply. He commands his brother to perform as well, regarding him imperiously from the confines of his carseat, and grabs his hand. I reach back and tickle the back of Justin’s knee, a guaranteed giggle spot for him, and try to evoke a moment of merriment. He does not return his brother’s gaze, and my attempts solicit only the slightest chuckle, almost imperceptible in its brevity. As always, I wish for more.

But as I turn in my seat further to explain to Zach that his brother doesn’t want to laugh right now, I look down and regard their hands, their fully clasped, intertwined hands. Justin has not let go, not repudiated the contact. As I watch, and listen to Zach’s amplified requests for mirth, I see my oldest give my youngest a gentle squeeze. I wait a few seconds, and witness him repeating the gesture again, as if he’s letting his doubting mother indeed know that it did occur. There exists, however tenuous, a bond. And that moment, that irrefutable moment of contact, of walls breached and bridges crossed, is everything.