December 7, 2011

Justin Time

Posted in Life's Little Moments, My Take on Autism tagged , , , , , , , at 9:42 am by autismmommytherapist

It’s the Monday after Thanksgiving, or the day I lovingly refer to as “Deliverance”, as my children have been in school approximately five minutes over the past three weeks. It’s not that I don’t love being with the little devils, but there is only so much one can do with the moderately autistic child who only likes three things, particularly in November in New Jersey. I knew I’d hit my wall this past Sunday afternoon when Justin even began rejecting computer time, and I looked at the clock thinking it was approaching 3:00, and we hadn’t even hit 1:30 yet. When that 30 Rock movie theater scene with Tina Fey and Dean Winters floated through my mind for the sixteenth time (you know, the one where they’re watching The Hours and both comment simultaneously it should be called The Weeks), I knew vacation needed to end soon.

And this morning, gloriously, it did. God bless IDEA.

I really shouldn’t be complaining, as things have been relatively calm this month, and we’ve endured entire years here where a tooth extraction sans Novocaine seemed preferable to even one more minute in this house. Everyone was fairly mature (including the boys’ parents), and the kids got along extremely well. Even though Justin had an off day on Thanksgiving (he made it seven minutes at the dinner table before I had to follow him for “surveillance”, but on the bright side, there was no time to overeat), I’d say the interlude was a success. We’ve got (in theory) four straight weeks of blessed school coming up, most of our fall doctor visits, IEPs, and conferences concluded, so it’s time to relax a bit.

You know, except for that little “Christmas thing” coming up.

So I hope you’ll indulge me for a moment if I brag a bit about something I learned in one of those recent school conferences, a little tidbit about Justin which was shared with me by his lovely teacher. After we settled into our seats and I congratulated myself on remembering to bring the “conference muffins”, we began to discuss his academics. Despite moderate autism, Justin’s reading almost on grade level, spells like a champ, and as for math, we’ll just say he takes after his mother. We then moved on to behaviors, where he continues to excel, which makes me just as proud as his academic progress. Finally, his teacher shared with me a little anecdote that sort of says it all about Justin, which is not easy to do.

One of the most challenging aspects of teaching my eldest has always been how quickly his reinforcers lose their appeal. Although the staff at Justin’s school is very savvy as to what the “flavor of the day” is, it seems that one day a few weeks ago Justin became quite agitated while waiting for his reward, one his aide was unable to identify. Given that he’s not at leisure to roam around the room whenever the mood strikes him, she encouraged him to ask for what he wanted on his iPad, even prompting him to try to spell it. He called up the keyboard, but was stymied. She then said he smiled, searched through pages so rapidly she had no idea how he’d gotten there, and found the icon that most represented what he desired. It was a chicken, one which when he pressed it, obligingly said “cluck”. He then stood up at his seat and pointed halfway across the room at a timepiece that apparently had caught his eye.

My kid wanted to play with their fancy-schmancy clock, and that’s how he figured out how to get his needs met.

The two of us spent a few minutes reveling in just how clever that really was, particularly since his mother spends quite a good portion of her own day engrossed in word retrieval, and is not nearly as successful as her son. I’m not sure what aspect of this pleased me more; that my son used his intelligence rather than a behavior to achieve his prize, or the look of incredible pride on his teacher’s face when she recounted the story to me.

Luckily, I don’t have to choose.

I hope you both survived and enjoyed your long week-ends also, and are able to dig in to a few consecutive weeks of relative calm in your respective abodes. With winter break looming (perhaps it won’t snow up to my collar bones this year, a girl can dream), I’ve got a few things to accomplish before school concludes once more, as I’m sure do all of you as well. Here’s wishing for a healthy, snow-free December.

And here’s hoping we all manage to get our needs met too.

March 1, 2011

POAC Gala 2011

Posted in Life's Little Moments, My Take on Autism tagged , , , , , at 12:44 pm by autismmommytherapist

A few weeks ago, Oprah announced to the world that she had located a long-lost sister she’d never known existed. Once I picked myself up off the floor (because really, doesn’t Oprah know EVERYTHING?), I admit I deviated slightly from my stimulating morning schedule of writing/laundry/Facebook, and delved into her story. It turns out Oprah has a half-sibling nine years her junior, a family member until recently kept hidden, completely lost to her. I can imagine she must have experienced ambiguous feelings surrounding the discovery, perhaps joy at finding a part of her heritage, perhaps regret at not having known her sister sooner (trust me, I do not presume to comprehend the inner workings of Oprah’s mind, I am certain it must be illegal). All I know for sure is that the universe granted her a new branch of family, with all of its inherent similarities and differences, residing practically in her own backyard.

And if you have a child with autism in New Jersey, Parents of Autistic Children (POAC) can be that new leaf on your family tree for you as well.

This past Saturday evening my husband and I had the pleasure of being invited to the annual POAC gala, at the Eagle Ridge Golf Club in Lakewood, New Jersey. I was, as usual, deliriously delighted to get out of my house (it was the first time I could breathe without steroids in a month, it doesn’t take much to excite me these days). The boys’ Grandma and Aunt Kate had been kind enough to volunteer to keep them alive so we could attend, and frankly I couldn’t wait to arrive at our destination (free babysitting, drinks, dancing and prizes in lieu of me in my bathrobe watching 30 Rock on our DVR, what’s not to like?). After a brief skirmish with my “bra master” that Jeff ultimately won (phooey on that first grade teacher who told him “brains yes, hands no”) we were finally ready to depart, and for once, nobody threw themselves across my stockinged legs and pinched feet and begged me not to go.

(No, Jeff’s not a giant, he’s just a yard taller than me)

All hail the power of Grandma.

It’s a beautiful venue, and thanks to the diligent efforts of the gala planning committee and the staff at Eagle Ridge, the entire affair was lovely. Faux fires spaced strategically around the rooms rid the air of that damp winter chill, the open bar was, unlike my twenty-something remembrances, not thirty people deep, and the appetizers were delicious and plentiful (did I mention the open bar?). Due to the benevolence of one of the primary volunteers for the organization Jeff and I were seated at a primo table, which although its proximity to the DJ would render me temporarily deaf for a few hours that night, did afford me the opportunity to survey the room and its occupants. I’d have to say it was almost a giddy crew, including many parents with offspring on the spectrum, grateful for a break from the usual grind.

In general, when it comes to entertainment, we are a people easily pleased.

After somewhat reluctantly tearing ourselves away from the hors d’oeuvres and cocktail hour (free samosas, yum!), me, my husband and a few friends I’d been fortunate enough to have assigned to our table made our way to our seats, and settled in. There was already food set before me which made me inordinately happy, and once most of the assembled guests had taken their places, the lights subsequently dimmed. Gary Weitzen, the president of POAC, took the floor. He then proceeded to deliver a speech that momentarily made me abandon my salad AND my breadstick.

Trust me, that is no small feat.

(Gary Weitzen, president of POAC, and all-around good guy)

As he dove into his recital of POAC’s myriad accomplishments over the last decade, he began with an anecdote many of my readers can relate to, one that made me regret not bringing to the party both my mascara and my lipstick. In a moving tribute to his child, he shared with us the devastating day a specialized pediatrician had told him, and his then three-year-old son, that the latter had major developmental delays. I wrenched my eyes away from Gary for just a few moments during his discourse, glanced around the dimly lit room, and noticed many heads nodding, viewed multiple bodies braced against chairs in anticipation of what surely was to come. Of course the crushing blow arrived in the form of an almost casual chaser, “your son has autism”, which quickly concluded the physician’s visit. Sadly, I am certain our POAC president, even in this day and age, is not alone in his suffering through the brevity, and coldness, of that concise phrase.

Gary shared with us that he drove home alone from Philadelphia with his son, mired in a fog that he couldn’t seem to dissipate with wiper fluid or headlights, until he realized its origins commenced with his own eyes. This was 1997. There were not as yet thousands of agencies, websites, blogs, and chat rooms for parents to commence their descent into the labyrinth of scant local services. There were autism organizations throughout our state, but there was nothing reminiscent of what we today know of as POAC. Free, plentiful trainings for teachers and parents throughout New Jersey, did not as then exist. Law enforcement did not readily have the option to be instructed in the signs of autism, were not frequently educated in the ways in which an individual on the spectrum might react in a stressful situation. Perhaps, most importantly, there were precious few opportunities for parents to congregate with their children in safe environments for recreational purposes, always for free.

(Simone Tellini, Training Coordinator, and a POAC mover and shaker)

Rather than capitulate to that reality, Gary Weitzen transcended that fog, and rose to fill the void.

I could share with you that POAC, in addition to offering the services listed above, is the largest provider of free autism training and education in the entire state. I could inform you that its classes for teachers and aides, focusing on the core deficits of autism, namely communication, behaviors, and socialization issues, have literally transformed entire classrooms. Finally, I could regale you with the joy I feel every time I watch my eldest child mount his ride, tell you that his intense love for the equestrian life would never have been discovered if POAC hadn’t pursued a local horseback-riding farm, and requested that they host an event.

I could tell you the latter, but then I’d just be bragging.

Instead, I’ll share this with you. I am so thrilled this organization exists in its many manifestations, with its bountiful services at my fingertips. I am so intensely grateful for the numerous companies who fund its endeavors, many of whom have only tenuous connections to autism through a valued employee. Watching my friends, and numerous people I’ve come to have a great deal of respect for whoop it up on a dance floor was a joy (and yes, me and my husband were most certainly included in that gyrating posse). In an act of over-the-top abundance I not only won a basket through the elaborately constructed raffle (then had to be educated as to who Ed Hardy is, it’s sad getting old), but I believe I’ve also scored a new playdate opportunity for my youngest, just one town over. I could tell you, with all honesty, that my oft-filled wine glass overfloweth.

But I’ll relate this to you as well. At the end of a beautifully constructed film montage, resplendent with unforgettable images of our children and their triumphs, one phrase, recited by those young voices able to enrich our lives with intelligible sound, rang honest and pure. In a world where often nothing is certain, this truth is indelibly clear.

We are family.

For information on how you can volunteer for POAC, or simply enjoy their events, please visit the website at:

www.POAC.net

May 26, 2010

Lost and Found

Posted in Fun Stuff tagged , , , , , , , , , , , , , , at 6:43 am by autismmommytherapist

Lost aired its final episode Sunday night. I am bereft, even though intellectually I know it’s only “TEL-EE-VI-ZUN”.

I’ve been sad when other dramas have departed the big screen, none more so than when Sex and the City went off the air six years ago. I remember that evening, recall telling my toddler that “short of him stroking out Mommy was going to see this episode live, so he’d better behave and sleep tonight” (I am just that kind of mom). I was disappointed and mildly disturbed at my lack of closure when The Sopranos went off the air, and my mourning for Six Feet Under was mitigated only by viewing the second last best fifteen minutes of a television series EVER (thanks Alan Ball, genius emeritus).

I also spent ten minutes sobbing in my husband’s arms when I realized not only was Jimmy Smits dying on NYPD Blue, but the little boy who spoke to him in his dreams was his unborn future son, which really put me over the edge (I know, that wasn’t a series ending, but I felt compelled to get that in here somehow). After my children came along I found I didn’t get out much anymore, so good television series, and fortunately there have been many as of late, have been a source of escape for me. I’ve relished every minute, looked forward with unswerving loyalty to every SATC movie that will ever be made, and contributed to every actor’s third luxury home by owning every DVD of each series. I am a dedicated fan.

And then, there was Lost.

Lost aired when my family and I were still living in Northern Virginia, just weeks before our lives would be changed forever by the brusque, slightly irritated declaration of “autism” by our son’s pediatrician as he shoved the names and numbers of some developmental pediatricians into my shaking and outstretched palm. The weeks that followed rendered his parents lost indeed, as we struggled to figure out what to do, who to call, what therapies to choose, what this meant for our lives, and what this meant for our son’s future. My husband, fortunately still employed, got to put it all behind him for the lion’s share of his day when he went to work. For me however, it was continuous, consecutive fourteen-to-sixteen hour days of chores, therapy, general child care, and the sinking feeling that this intruder into our lives was permanent, that my son would not be one of the fortunate crew who would live with his ailment yet be fortunate enough to lead an independent life. Lost became my invaluable escape from autism, and the knowledge that at least twenty-two hours of the year I’d have to stretch my brain for something other than the ramifications of my son’s neurological disorder was a great comfort to me.

I was not the only person captivated by the rich story lines, intense character development, and tantalizing mythological references that comprised the television show. Even famous people have been seduced by its magic, as when Rainn Wilson outed himself as “gay for Richard” after that particular character’s backstory episode aired (I must admit, as much as I loved gazing at those miraculously unlined eyes I reserve my gay for Tina Fey – Mean Girls and 30 Rock will forever have my heart, as will that Brownie Husband segment on SNL). Lost has been viewed and revered by millions, and I’m proud to count myself and my husband as part of the flock. I will miss all of it dearly, from Jeff’s and my unwavering commitment to view every episode together, to our discussions afterwards as we pretended to understand what had transpired, as well as when we fooled ourselves that we could dissect the missives of the brilliant Doc Jensen on EW.com for hidden meaning the following day. We once tried to play “drink mythology” as a way to reward ourselves for figuring out literary references as an episode played out, but when we quickly realized our palates would remain primarily dry we ditched that approach, just laid back, and took it all in. It’s been a wild ride ever since.

It hasn’t just been the excellent writing, the consummate acting, the eye candy of Matthew Fox or Josh Holloway, or those fabulous one-liners intermittently dropped by Jorge Garcia on his loyal viewers. There have been the themes to explore, a handful of which I feel pertain strongly to my life as well. Sacrifice. Redemption. Choices. Faith. Producers Lindelof and Cuse have included something for every viewer, should they care to drink at the trough.

All of the characters on Lost had to make gut-wrenching sacrifices in order to grow. Clearly, as any good parent of a child with or without a disability does, my husband and I have made sacrifices too. Our relocation to New Jersey from Virginia somewhat stalled my spouse’s career, and definitely tanked mine, at least for the time-being. We left behind a fairly rocking social life for two almost middle-aged people with a child, and found it’s taken almost four years to begin to build one again. Then of course there’s the financial aspect of autism, where we pay out-of-pocket for every therapy our oldest has, because our adopted state south of the Mason-Dixon line has yet to get on board in the insurance wars. We’ve given up stuff. The truth is however, we’re parents. It’s our job.

I’ve found, through sacrifice (which trust me, I was not inclined to make too many of prior to giving birth), that I am a kinder, gentler person. Letting go of my singular desires for the good of another person, particularly a child I adore, has redeemed me from the somewhat career-obsessed/what are we doing Saturday night individual I once was in my twenties and early thirties. Having a child with a major neurological issue forced me to dig deep into my soul, question everything I thought mattered. My son, and his autism, redeemed me in a way, encouraged me to make better decisions about how I spent my time, more insightful choices as to what would define my life from now on. He’s made me a better person.

As I’ve watched each character on Lost struggle with the choices that have lead to redemption for many of them over the past six years (many were engaged in battle in two worlds simultaneously, I should stop complaining), my husband and I have endeavored to make the right ones for our son, then our sons, then our entire family as we’ve taken this journey. I’m not certain the choices we’ve made have always been correct. Some days, just like the characters on Lost, I think we haven’t even come close. I’ve witnessed the actors fight to exit the island with all of their will, and sat mesmerized as many of them realized departure wasn’t the answer, that escaping a geographical location would not release them from their inner torments. I mirror their conflict when I contemplate how I regard my sons’ “extra”, when I attempt to consolidate my acceptance of their plight with my understanding that I will never be completely at peace with it. I understand it is ultimately my choice as to how I view this disorder and how it manifests in my family. It may truly be the sole event over which I have any control.

I have to admit that the one theme that has resonated most with me over Lost’s tumultuous journey is the one embodied by the good doctor, Jack Shepherd. Watching his tenuous transformation from a man of science to a man of faith for more than half a decade has enabled me to define my concept of faith, and to whom I bestow it upon. Back in the day, my faith was unquestionably linked to my parents and grandparents, then as I grew older came the subtle shift to friends and husband. Ultimately, my choices have lead me to a greater faith in myself. This feeling, this certainty, is stronger than any I personally have ever encountered in my Presbyterian parish when I was growing up, or later in the great cathedrals of Europe as I prayed and waited for a feeling, a moment, even the slightest sign that indeed something was out there greater than myself. I tried. It never came. It hasn’t to this day.

But what has evolved in me is a confidence that although there will be bumps along the road of life – polar bears, Smoky, a disastrous detour of a storyline – eventually my husband and I will figure it out. Sometimes it won’t be pretty. I have not been above imagining a sideways world myself, one without sleepless nights, the vagaries of intermittent OCD, and a seemingly endless supply of poop. I had twenty months of “normal” with my second son, and although that experience was difficult at times too, it never carried with it the emotional pitfalls that an autism sentence inherently conveys, and for me that has been the most difficult concept of all to transcend, the idea that this is permanent. There is no escape for this family, no plane that might or might not be blown up to whisk us away from autism island.

I have learned, however, that a fairly happy ending is indeed possible.

I know there are naysayers, but for this fan, I now feel this is THE BEST ENDING OF A TELEVISION SERIES EVER. No, not every mythological question was answered, and we’ll never know how long each of the characters lived in their parallel universe, and how they died. I do know however, that as we watched Matthew Fox’s eye close in the only possible last scene that could have given me closure, my husband and I had already been bawling for twenty minutes and had vowed at least six times to become better human beings.

I hope it lasts.

So for now I’ll say goodbye to the show that has followed my family’s progress from downright miserable to most days enjoyable, and at the very least, tolerable. I will count the months until the six season box set is made available for my viewing pleasure, and will voraciously explore every extra, deleted scene and actor’s chat made available to me, save the choice to be regaled by the aforementioned options in Spanish. I will hope for yet another hit show or movie for Matthew Fox whose work I’ve enjoyed since his Party of Five days, and pray that no other network will feel compelled to try to emulate Lost’s success with some flimsy replica which I will be forced to disparage. Some things in life, and in art, are simply epic, and cannot be repeated.

To the writers, actors, directors and producers of the show (and the craft services employees who kept them happy), I bid a fond adieu, and my thanks for six incomparable years of entertainment.

Your fans, are indeed, lost without you.