October 1, 2012
He runs with surprising speed from bathroom to bedroom, towel trailing behind him as I beg him to return to no avail. Over the past two weeks my eldest has created this game for his own amusement, one in which a dripping wet boy tries to dive into dry sheets before his middle-aged mother can prevent him from doing so. Somehow, almost every night in September, he had negotiated the space in our bathroom between me and freedom with absolute ease. I have had to track him down each time to prevent having to change his sheets, a chore I seem to despise even more in the evening than I do in the early hours of day.
Tonight, however, I’m on to him. He races into his room with his mother mere inches from his dripping torso, but for once, he stops short of his bed. Justin is staring at his bookshelves with a look of wonder, and I watch as a huge grin glides across his face. I take the opportunity to wrap him up again in his warm cotton Cookie Monster towel, and congratulate myself on winning this round.
It’s a small victory, but it’s mine. I’ll take them where I can get them.
I know exactly why he’s so happy, and watch as he grazes the spines of his reading material ever so gently, pushing back a few books so that all are flush with one another. His joy is twofold. First, he recognizes that the literature has changed, because his mother has succumbed to the demands of a better-late-than-never spring cleaning, and has finally purged the baby books that have graced his shelves for far too long.
Last, he realizes I’ve tucked his favorites from infancy and toddlerhood into one of the upper corners of the shelves, because I simply can’t bear to part with them, no matter how ragged and torn they are. I watch as Justin jumps up and down with delight, and I take the opportunity when he’s airborn to maneuver him across the hall back to tiled floor, and the lonely toothbrush that is awaiting him.
I’m thrilled, because it’s the first time I’ve seen him excited by a book in ages, and this used to be “our thing”. Besides, who can get rid of Eric Carle?
We quickly conclude our bedtime ministrations, and Justin dashes back to the bedroom, impatiently thrusting his pajamas at me so we can get down to business. Memories flood back to me or our house in Virginia, where toddler and infant Justin forged his appreciation for words and illustrations, and his mother reveled in our shared interest. For years books and Baby Einstein videos were the only vehicles available with which to soothe his tantrums, and since I could only watch spinning teddy bears so many times, reading material usually won the day. My small son and I spent many an hour cuddled on the couch under a comforting blanket, finding out the fates of errant spiders or ducks with unreasonable demands. Quite often we’d drift off to slumber mid-sentence.
Reading is hard work after all.
Unfortunately over the last few years his penchant for books has waned, and has been replaced by an unfathomable desire to destroy his once cherished friends, a symptom of his autism I know I’ll never comprehend. I often have to read to him while in motion, at times holding the book in question over my head until his urge for capture has disappeared. I long ago ceased engaging in this activity in his bedroom, as I’d invariably be greeted the next morning by the remnants of a good read in his waste basket. This was despite the fact that he was thrilled beyond reason that I’d shared said read with him the night before.
Yet another mystery of autism I’m confident won’t be revealed to me any time in the near future.
Although I’m wary about reinstating our bedtime ritual I’m also hopeful, because the key with Justin (and almost any child) is to let him lead, to see the world on his terms, to embrace his whims whenever possible. Maybe the subtle changes on white shelves has renewed his interest. Perhaps seeing all his favorites from infancy banded together has inspired him. Maybe tonight he’ll let me unveil a story to him once more, will permit me to indulge in a pastime I too have loved since toddlerhood, one that once bonded me to my son in a way I never thought possible.
Of course, there’s no pressure surrounding this moment. None at all.
He selects one of his all-time favorites, worn and weary but still viable after nine years, and settles into my lap. My eldest sits quietly as I proceed with the story arc of one ravenous caterpillar, and I recall how when he was younger reading was the sole pastime where he was still, where his overabundant energy was finally (and for his tired mother, gratefully), contained. Eventually, both emerging butterfly and boy are satiated, and I offer to read him one more. He slides off my lap and firmly replaces his find, looks me right in the eyes, and throws himself onto his bed.
Normally at this point I would have been wrestling his preferred author out of his hands, but tonight he seems at peace with his choice, and with my having read it to him. I do however wrestle with whether or not to leave Mr. Carle’s work shelved with his other stories, and decide to throw caution to the wind. I wrap my not-so-small-son up in his rocket sleeping bag, and throw his softest blanket on top of him for good measure. Justin bears with me as I butcher the trilogy of lyrics I’ve sung to him since he was little, then gently and firmly pushes me off his bed and toward the door. I bestow one last kiss on the nape of his neck, the only stretch of his skin left showing, and head for the hallway.
Over the years, I’ve finally learned how to take a hint.
I have no idea what will be waiting for me in the wee hours of the day to come, but then again, that is true of everything. Over the past few months I’ve watched Justin take an unpredented interest in his little brother, the ramifications of which could encompass a post all by themselves. I’ve witnessed his increased ability to wait for his whims to be satisfied, often without an accompanying pinch, or whine. He’s even embraced mini-golf, which since I remain the mini-golf queen (at least in this family), has only endeared me to him further. These are subtle changes, no parades evoked, no monuments erected. They simply are evidence of happiness, an increasing desire to try new things (and reinstate old), and perhaps, most importantly, a sign that Justin is learning to embrace change.
And as I gently close the door behind me, I silently thank the universe for a good night.
July 29, 2011
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.
May 25, 2011
I’ve mentioned this before in my writing- when it comes to my children’s education, I have two very fortunate offspring. My youngest is thriving in his local public school, entertaining himself almost weekly with fossil digs, and “bear hunts”. Most recently, his joy was compounded by singing exuberantly in a choir of a hundred pre-school children (how a music teacher can convince that many three-to-five-year-olds not only to mimic her hand movements but learn (most) of the songs’ lyrics as well, is beyond my comprehension). He loves his friends, the paras, his teacher (trust me, many of his sentences at home begin with “but Miss Liz says”), and is almost as eager to see that school bus arrive each morning as his mother is. In ABA terms, school, for Zach, is a primary reinforcer.
And then, there’s Justin.
My eldest child has always adored learning, easily surpassing my computer skills by the age of two (I know, that’s not saying much), and often flinging books at me over the years to read to him until I taught him to hand them to me (it’s tough to read the work of Eric Carle with double vision). That early love of literature has fortunately flourished into his own ability to read, a skill he possesses for which I am eternally grateful. He’s not big on math (neither was his mother), but I’m certain he would have been a killer contestant in a spelling bee. He’s formed a friendship with one of the students in his class who has technically adopted Justin as his little brother, and I’m told he now moves rather easily from task to task, location to location, with little angst.
And trust me, I’m grateful for that too.
Ms. Hillary Clinton once stated that it takes a village to raise a child, and I can assure you it takes an entire planet to raise one with autism. His progress to this point has been a culmination of the efforts of his teachers from his last two placements, as well as his current one. Justin has benefited from dedicated staff at all five of the schools he’s attended up to this point, educational facilities spanning two different states. His father and I are thankful for the compassion and caring he’s received from all of his centers of learning.
I simply must say however that his current school is different, and I was reminded just how special it is when I learned about its history this past weekend at the Search Day Annual Dinner Dance, where we celebrated the school’s fortieth anniversary.
The Search Day Program is unique in part because it was the very first twelve month specialized school for autism, the brain child of a very dedicated group of parents in the sixties who recognized a need for a different type of learning environment for their children, and stopped at nothing to achieve it. Some of these early founders went on to establish Autism New Jersey (formerly known as COSAC), a state organization which provides support and advocacy for parents of children with autism. I’m a proponent of putting things into context, and I can assure you that what these parents achieved in that time period, while IDEA was in its nascent stages, prior to the internet, and before any widespread knowledge of autism (or compassion for those who have it), is nothing short of miraculous. I’m forever indebted to their advocacy and determination, and I’d just like to thank these pioneers for providing a venue that has helped so many children, and their families, reach their full potential.
Due to the collective efforts of various teachers, parents, and corporate sponsors such as Home Depot, TD Bank, Foodtown and Wegman’s, Search Day has expanded from classrooms situated in the rented space of a church basement, to the excellent facilities it is comprised of today. Search’s campus now includes three buildings and thirteen acres of land, on which the various school programs, a Career and Life Center, and a Campus Store, are located. Through the efforts of those who helped raise funds for various projects a new playground has been constructed and a swimming pool installed, the latter in which I’m hoping my eldest will learn to paddle just long enough to save his life if necessary.
And while it also takes an entire planet to create a school of such caliber dedicated specifically to the advancement of those with autism, none of it would take place without the dedication of a brilliant, and highly motivated staff.
On a recent Friday night, after indulging happily in our two free drinks and cornering the market on the plentiful mini-quiches and pigs-in-a-blanket floating around the room, Jeff and I joined the other hundred-plus parents, educators, and sponsors who attended the gala at the English Manor in Wanamassa, in the large and beautifully furnished dining room where I was happy to be served a fine meal I neither had to cook nor clean up. We listened to a passionate and rousing speech by the school’s director, Kathy Solana, who almost made it to the end without crying. Jeff and I couldn’t help but revel in the rousing cheers, particularly from the teachers, for every single child featured in the moving slide show presentation (the one of our son seated next to Santa with a “why the hell am I doing this look” was particularly priceless).
The truth is, I could ramble on about the obvious commitment of the staff, some of whom have worked there for decades. I could describe the overwhelming compassion for not only the children, but for their parents as well, as evidenced in every conversation I had with Justin’s teacher, his aides, and his speech instructors that night. I could share with you that I wondered when these people ever sleep, that their sheer willingness to go above and beyond for their students on a day-to-day basis is what renders this school unique.
But the real reason this school is special is simply due to the staff’s palpable joy in working there.
I was an educator (well, will always be an educator), for thirteen years, starting as an aide at a school for emotionally challenged children in New Jersey, and eventually ending up at a magnet school in a public school district in northern Virginia. I’ve been fortunate during the span of my career to know phenomenal teachers, true visionaries in their fields. Some of them, to my never-ending gratitude, have worked with my children. Truly, I’m no stranger to amazing educators, whom we in the field often refer to as “lifers”.
I must admit however, that I have rarely encountered a school where every single faculty member I’ve met has resided in this exclusive club.
As Jeff and I eventually left the gala, total losers in the raffle and the 50/50 but happy to have gotten out of the house, the director took ten minutes of her time to escort us to the door and chat with us about Justin’s progress, and her vision for the school’s future. I admit I was a bit teary as we exited the premises (with my ramped-up crying these days I think Jeff’s worried I’ll be going through the “change” soon, and is concerned his prospects for a happy future are rapidly diminishing), but I pulled it together enough to convey to my husband how fortunate we were to have landed on this particular square, in the lifetime chess game of autism. The truth is, I may not ever be able to give my boy actual words, or the intimacy of a lifelong friend. I won’t dance with him at his wedding, or watch him drive off into the sunset with his lifetime love. He won’t make me insane with his incessant and unreasonable demands as a teenager (maybe that’s not such a bad thing after all).
But with a lot of hard work and the support of his incomparable grandma, his father and I were able to give him this school, this education, this pathway to progress, and that is no small thing. To the staff and supporters of Search Day School, and Justin’s home district who made it possible for him to attend, we would just like to say we are so deeply appreciative.
March 13, 2011
This morning as I checked my email I noticed a new Schafer Autism Report was out, with the timely title “Is the iPad a ‘Miracle Device’ for Autism?” prominent in my inbox. I mention the title is timely because I just spent an afternoon at my son’s school getting acquainted with his new iPad, which has been fitted with “Proloquo2go”, or as I like to call it, the “miracle app”. Although every time that three letter abbreviation is mentioned I am compelled to think of food, I managed to focus during the ninety minutes Justin’s teacher and speech instructors introduced me and my mother to his new augmentative device (yes, I was proud of myself). It is, in fact, a miraculous contraption. As I navigated my way through the speech teacher’s carefully constructed folders (after making a mental note to make her show me how to turn the device on before the session concluded), I admit I was elated with the promise it held, the opportunities spread wide open for my bright boy.
Now I just have to stop perseverating on my fears of breaking the thing.
Justin has truly outgrown his former communicative device, the Springboard, which has since died an inelegant death after taking an impromptu swan dive during snack time at school. Fortunately, this dearth in communication lasted only a few days for my son, as due to the diligence of his school staff this new Apple contraption was almost ready for his use. For ninety minutes yesterday my mom and I were treated to a tour of its properties, with the two of us making a few suggestions here and there, while the technology wiz before us did the tweaking (you know it wasn’t me). Mid-way through the tour we watched breathlessly as a “button” was pushed which displayed the alphabet, its symbols revealed to us in all of its small and large-lettered glory. I sat in wonder as I realized this device, unlike his last one, is capable of “speaking” his wishes to the world, rather than simply spelling each word out loud.
Oh please, dear universe, I’ve let go of my dream of reclaiming my pre-birth semi-flat stomach for all eternity. Let’s permit this particular miracle to come to pass.
I’m excited for the other options on this program as well, the opportunity for Justin to reveal his feelings to us with the touch of his fingertip, the chance to “say” ‘Happy Birthday’ to his little brother. Hell, the staff even managed to create a page that diligently lists every Eric Carle book ever created, and since we possess each title in its now tattered and bedraggled form, Justin can even fulfill his literary needs without rearranging every bookcase in the house. I’m hoping that with a multitude of options laid out in colorful array before him, that maybe he’ll even begin to request more interesting leisure activities than his staple DVDs and plush toys. Perhaps one day, he’ll demand an activity that would necessitate participation by his entire family.
I admit, as we perused the creative wonders of minds far more technologically savvy than mine (which is clearly not even close to giving the geniuses at Apple their due), I am completely consumed by one aspect of the device, the one that would simply open up the world to him. The truth is, my son doesn’t often communicate his wants to us or instigate conversation, has in fact primarily used his augmentative devices for academics and basic needs. As he’s grown more independent he’s mostly employed the technology for the former, which has been a bittersweet outcome for me. While I revel in his ability to meet his own desires, his newfound competence has precluded his wish to initiate any kind of dialogue with us. In the last year, his cumbersome device has often been relegated to the back corner of its table, left alone and ignored, rendered mute in its abandonment.
Today however, I’m allowing hope to creep back in once again. Perhaps the allure of these carefully constructed screens will elicit this desire to reach out to us, to commence any kind of conversation that transcends mere need. I am permitting the sometimes elusive specter of hope to make its return because I don’t believe I’ll hear my boy’s authentic voice during my lifetime. Despite his fairly tender age, I am convinced that the severe apraxia that so plagues him will effectively render his vocal cords mute forever, save for the plethora of vowel sounds that punctuate our days. I’ve accepted this fate for him and our family, have relegated it to the back of my mind, let the sadness of the situation go. As my grandma was fond of saying, “it is what it is”. To dwell there is not productive for anyone.
But maybe, just maybe, there are some miracles left in the universe. Perhaps one day, with the use of this wonderful device, me and my boy will simply have ourselves a little chat.