May 31, 2011
Today’s Gratitude Attitude goes out to my sons’ teachers. In the past week I have attended two incredibly well-organized Field Days at both of my sons’ schools. Watching Justin, in particular, participate with enthusiasm and complete compliance, was a joy. Zach was beside himself to “perform” as well (he never misses an opportunity whenever possible). Thanks so much to all the staff who made both events so wonderful!
May 27, 2011
This past weekend, Zachary and I had part one of “the talk”. Not the “Santa/Easter Bunny/Tooth Fairy/dinosaurs are pretend but alive in your heart” talk, nor the extended version of where babies come from (he is only four after all). No, this past weekend, in the midst of projective vomiting from my eldest that would have put Linda Blair to shame, my son asked a question. “Mommy, what makes autism?” I quickly put down what would be my fourth of seven loads of laundry that day, and in my head I replied, “well honey, you and a few million people worldwide would like to know”. With my mouth, I actually answered, “we don’t know exactly sweetie, but autism is why Justin says “eeeeee”. He regarded me intently for a moment, and I waited for the usual barrage of follow-up questions that usually stem from even his simplest query.
Then he asked for more pretzels.
I had a feeling this question would surface soon, as we had recently spent several hours at Lakewood BlueClaws stadium for POAC’s (Parents of Autistic Children) first 2011 walk-a-thon. I’d told him we were attending the event to help people with autism, and that we were specifically walking for Justin, who has it. I waited to see if he would pursue the issue further, and he didn’t. I’ve decided this is one area of his childhood, to a point, in which I’ll let him lead me, divulge as much as is necessary to quiet the questions and concerns in his mind, rather than barrage him with more information than he can handle. So far he seems to take it all in stride, both the knowledge that his sibling is on the spectrum, and the realities Justin’s diagnosis confers upon his life too.
Since Zach’s the youngest, he’s only ever known Justin this way, is used to a brother who doesn’t play with him in a traditional sense, yet interacts with him all the same. To my everlasting relief, they’ve managed to forge their own bond. Justin shares his coveted DVDs with Zach (as long as he doesn’t get too close to the player, that is), and tolerates his brother’s myriad attempts to “borrow” the toys he’s playing with (the fact that Justin is almost twice his sibling’s weight phases him not one bit). For my youngest’s part, despite the fact that Justin doesn’t respond to him in words, Zach insists on imparting every triumph and tragedy in his little life to his big brother, and comments frequently on Justin’s actions to him. Recently, for the first time ever, Justin withdrew his artwork from his backpack after school, proudly displayed it to me, and physically prompted me to place it on the refrigerator. He did so with Zach’s running commentary of his technique accompanying his request, my eldest beaming at the praise he received, my youngest impressed at the size and “realness” of Justin’s leprechaun.
Let’s just say, in this house, it was a total Hallmark moment.
I am certain someday we’ll explore all the “what’s” and “whys” of Justin’s brand of autism further with Zach, and I also know that at some point we’ll have to conduct part two of the dialogue. Someday, my husband and I will need to share with Zach that he has autism too, and I trust we’ll handle it with grace. Somehow we’ll have to find the words to explain to him that the disorder he and his brother share possess the same name, yet manifested in a completely different manner. Hopefully, Jeff and I will convey to him that his autism may be the wellspring of his phenomenal memory, or his burgeoning ability to read at a tender age. We will, in good conscience, also be required to explain to him that it is probably the cause of his anxieties, and the difficulties he has attending to tasks. As with much in life, there is yin, and there is yang. I hope it comforts him to comprehend the inherent nature of both his complexities, and his gifts.
I’m not sure there’s a right way or a wrong way to have this talk. But there is one thing, as we go down this road together, of which I am completely certain. Zach will know, and he always will, that we accept him and his brother for who they are. Both of my sons will find security in the solace that they are deeply, adoringly, loved. And I’m convinced, after having been on this autism journey for almost a decade now, that because of these irrefutable truths, half the battle has already been won.
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.
May 24, 2011
This week’s Gratitude Attitude is dedicated to the students and staff of Search Day School, who created and participated in such a wonderful Field Day Event this past week. My hat is off to anyone who can get Justin to enjoy sports, and his little brother was equally excited to cheer him on. Thanks so much for all of your hard work!
May 22, 2011
It’s the Saturday before Easter, and Jeff and I are trying desperately to corral two young boys onto the potty and into their sneakers in a somewhat timely fashion (and failing miserably). Truly, it’s our fault the kids are so antsy, as we foolishly put their Easter baskets adjacent to the front door in an effort not to forget them, and now that the kids have seen their egg receptacles, all hell has broken loose. Justin is running back and forth yelling his usual excited “EEEEEEEEE!!!!!!!!!”, which proceeds every occasion he believes will be fun. Zach is almost literally jumping out of his skin, screaming “It’s Easter, it’s Easter!!”, which it’s not, but that technical fact seems to be lost on our little guy. My husband and I have a moment where we look at one another and question our collective sanities, but we rally, and eventually make it out the door.
All I can say, is at least as far as Zachy’s concerned, the Easter bunny better damn well show.
We’re going to separate events today, as my local school district’s special education PTA is holding an egg hunt at a nearby park my oldest still loves, and the town next to ours is holding their own Easter shindig courtesy of the Elks Club, and I want the McCaffertys to represent at both. Our SEPTA works tirelessly to put together events for children with a variety of special needs, and our local Elks, Lions, and all other animals of forest and jungle are incredibly generous in their support of our kids as well. I’ve also learned over the years to match the program to the child, and while Zach would be equally content in either location, Justin would mutiny if brought to the Elks party. We tried to make it work at Christmas, and within ten minutes he had haltingly scribbled on his craft place mat, regarded grown-ups in the guise of elves with utter disdain, and commenced the low-grade whine that meant we weren’t even making it to the chicken nuggets. It just wasn’t his thing.
In other words, I’ve tried to stop making the holidays about me, and think about the children. It’s a work in progress.
After securing Justin safely in the car we make it to the park in record time, and I anxiously regard my watch to ascertain if we’ve arrived too early, meaning I’ve already blown it for him. Waiting is not Justin’s forte, and my chances of getting him to engage in this activity, even one that he loves participating in at my house and at Grandma’s annually, are shattered if he has to stand around for even five minutes (he’d make a great celebrity). I buy us a minute or two by letting him reorganize my CD collection in its black plastic holster, but eventually even handling Sheryl Crow bores him, and it’s time to exit the vehicle.
I place his basket in one hand and grab his other tightly since we’re in a parking lot, and although he’s attained almost eight years on this earth, the likelihood he’ll run in front of a car he’d never notice remains great. We make our way across damp, loamy earth and approach the open field, and I regard dozens of parents and children eagerly anticipating the imminent festivities, the children festooned in pastels, straining against the confines of the adults’ protective hands. I lean down and close the slight gap remaining between me and my eldest boy, and remind him this is an Easter egg hunt, that it will start soon, that even as of last year he still loved acquiring chicken cast-offs. As we approach the perimeter of the playground just adjacent to the field I have high hopes he’ll enjoy this, and I retain those hopes until we reach the first group of egg seekers, at which point he stops dead in his tracks. Justin looks around, takes in the scene, then makes up his mind about poultry products, Easter, and participating in group activities in general.
His lordship is not pleased. In the next second, he takes off.
To be completely fair to Justin, we have a routine when we come here, one I’ve tried in vain to vary over the years. The two of us cycle through each of the three playgrounds, tiered beautifully so the last one culminates with beachfront property at river’s edge. Once he’s finished conquering his plastic behemoths he always makes a dash for the dock, at which point his frantic mother tries desperately to keep time with his loping gait, as well as anticipate what fishing lines or sharp cutlery he’ll possibly impale himself upon prior to reaching the end. We conclude with a stroll down the beach, which generally consists of Justin’s attempts to play with toddlers’ toys, and my explaining he has autism and didn’t mean to destroy their sand castle/kick sand in someone’s eye/steal their precious treasure. Eventually, we make our way up the steeply graded hill to the car, he happy as a clam with the day’s adventures, his mother looking as if she’s just experienced a night sweat.
All in all, we will have killed twenty-seven minutes of our day.
I rush after him as he boycotts swings and monkey bars and makes a break for water, half registering the confused looks on some of the adults’ faces as the announcement has just come that the hunt is about to begin. He swerves right as I anticipated, and heads for that jutting wooden contraption that usually contains so much danger, but today, for once, it is mercifully bereft of hooks and bait. I contemplate attempting to drag him back up the hill as I know all the good loot will be retrieved in under ten minutes, but instead, I simply follow Justin’s plan. Within minutes we are at the end of the pier, buffeted by conflicting winds on all sides, enveloped in the scent of briny sea. My son runs back and forth, back and forth, halting occasionally to stare at the horizon, continually culminating his maneuvers with a mighty hug and kiss for his mama.
I glance back over my shoulder, and although I cannot see what’s transpiring above, I can hear the ecstatic echoes of joy carried across the current, to which my boy is oblivious. I wait for the sadness to kick in, the regret that Justin is not enmeshed in the fun, the envy that my husband is surely witness to my youngest’s ebullient participation in traditional Easter fare.
I wait. And I notice that my usual melancholy around these affairs remains relegated to the recesses of my mind.
I look at my boy, really look at him. He is thrilled with his day, not sad in the least that he hasn’t acquired his colorful plastic prizes. He is, after all, approaching the mature age of eight, and perhaps he’s outgrown this timeless ritual. Perhaps the reasons for his lack of interest, in the end, are completely irrelevant. At this moment he is happy, at peace with the world, satisfied to engage in the customs of our tradition at this place he’s been coming to since he was the tender age of two. He is joyful in his play, remains immune to regret.
And this time, joyfully, so do I.
May 18, 2011
Even at the tender age of eight, my son Justin has somehow managed to acquire several paramours during his short stint on earth. First, there’s the love of his life who lives around the corner, a girl for whom he would do anything. This dedication includes shoving me out of the room whenever she arrives to play with him (in a painful, bruise-in-the-small-of-the-back-kind-of-way, it’s a proud moment every single time). On a local beachside playground there was a lovely teenaged girl we continually encountered on summer afternoons, a love interest with whom Justin shared his toys, and his kisses. There have been mild flirtations along the way with the few girls in his classes (that 4:1 boys to girls ratio for autism has not been in his favor), including a young blond thing in pre-school for whom he tried to escape his classroom whenever he caught sight of her. Let’s just say, his one-on-one aide was in great shape that year.
And then, there was Kerry.
I’ve written about Someone Special Needs You (SSNY) several times since I’ve begun this blog, not because I’ve run out of things to talk about (trust me, with autism, you never run out of things to talk about), but because it’s carved out such a unique place within Justin’s lexicon of activities, and within my heart. It’s a group which convenes eight times a year in a church in Colts Neck, NJ (nope, it’s not religious in its origins), and includes neurotypical teen-age peers and children with a range of disabilities as well. Sometimes there’s a theme, such as Christmas/Chanukah or St. Patrick’s Day. On occasion the group’s founder, Vince Scanelli, hosts a full-fledge carnival, or a graveyard Easter Egg hunt. There’s always a craft and an abundance of snacks, which Justin usually consumes as if he’s eating for three. For the most part my eldest only deigns to share his company with the group for about half an hour, but I know on some level, he enjoys his participation.
But the best part for him, hands down, has been his buddies.
Justin has never been a patron of the arts-and-crafts, and I’m pretty certain even the allure of unlimited potato chips wouldn’t convince him to get out of the car at 6:30 at night, at the end of a long week at school. No, the single most motivating factor to inspire Justin to do something other than handle toys that light up and spin, has always been women. This is a trait he seems to have inherited from both sides of his family, with the sponsors being his father and maternal great-grandfather, respectively. My son loves being fawned over (as on occasion, have said father and great-grandfather), and for at least a limited time, will do absolutely anything for a pretty, smart, kind girl who’s been his friend for four consecutive years (that includes painting a damn leprechaun).
And since he was four years old, for most of the time he’s participated in this group, Kerry has played the role of primary reinforcer.
Justin’s fabulous buddy is a senior in high school, and although I’ve had almost half a decade to prepare for her departure (come on girl, what about online learning, it’s the wave of the future), I was still unaware that our April get-together would probably be the last event my son would be able to spend time with her. I thought we had one more gig in May, during which I would have actually remembered to bring my camera and at least presented Kerry with some photos to remember Justin by, but I was informed early in the event that our sojourn to the gymnasium that evening would be our last until September.
Once I saw that Kerry had made it, and that Justin would get to say goodbye to her, I rallied (never let it be said I’m not a rock of a woman). I left the two of them to their own devices, and helped my husband keep Zachary alive, which given the height of some of the equipment and my youngest son’s refusal to fear anything, was no easy task. I admit, I was easily able to put Kerry’s imminent departure out of my mind in an effort to ascertain exactly how many exits Zach could escape from in each bouncy unit (generally, there were no less than three, Jeff and I were outnumbered).
Eventually, after an hour of gut-queasy bouncing and multiple room changes, the evening concluded. I asked our soon-to-be-former buddy to escort Justin to the car so he, and I, could say a proper farewell to her. Jeff and I successfully strapped two hyper, over-tired young children into our SUV, I counted the twelve bags that comprise our entourage wherever we go, shoved them in the trunk, and asked Kerry to lean in and hug Justin. She did as asked, extending a full-body embrace and a kiss on the head to my boy, then she turned back to me to say goodbye and hug me too.
I opened my arms, got out “thank you for everything”, and totally lost it on the shoulders of an eighteen-year-old girl.
In my defense, just prior to completing that circle of love, Kerry shared with me that she would be studying to be a speech therapist in part because of Justin, and frankly, I’m not certain how I could have contained myself after that declaration. As I’ve mentioned before, I’ve managed lately to relegate most weeping episodes to television and film, the finale of Lost and my husband’s cruel sharing of the end of Toy Story Three coming to mind. I just don’t find crying all that cathartic anymore, what with the raccoon eyes that follow with the accompanying migraine chaser from hell, so I’ve channeled my desire for release into other outlets.
No, not drugs. Reality television and the blog, people, the blog.
I immediately apologized for sobbing all over her pretty Gap t-shirt, and managed to state without a full-fledged gulp accompaniment how much her participation in the program had meant to Justin, and to me. I thanked her for her commitment to him, how she showed up during flu season and finals, in inclement weather and sunny skies. I informed her she would be an inspirational speech therapist, and that I was proud my son had influenced her decision, even if only in some small way.
I shared with her that one of the most difficult things for me to accept about the nature of my son’s disorder was that in the truest sense of the word he doesn’t have friends, is bereft of the companionship that has sustained me through some of the most difficult periods of my life, as well as provided me with some of the most hilarious moments as well. I told her that in her own way she had been Justin’s companion for the better part of four years, and that filling this gaping niche in his life had played an instrumental part in his social growth, while simultaneously filling an aching need for myself as well.
Then I took a deep breath, sniffled one last time, and managed to let her go.
After making her promise to keep in touch I slid behind the wheel of my car, accepted the proffered tissue from my somewhat confused spouse, and carefully began backing out of my microscopic parking spot. Jeff asked me if I was okay, which unleashed a second wave of weeping, as I tried to explain to him what this girl had meant to our son and me, and failed miserably (it’s hard to talk when you’re hiccupping). Eventually I got a grip, engaged my GPS so I could find my way home and not rely on my husband’s incredulous instructions (the fact that we were simply retracing our previous steps means less than nothing to my direction-addled brain), and headed for home.
I glanced back at my boy, strapped carefully into his fortress of a car restraint, rocking out to Stevie Nicks and blissfully unaware that this hug heralded the end of an era. I sent a silent plea to the universe I wouldn’t have to witness him searching for her at SSNY in September, then eased into traffic on the main thoroughfare. I filled my lungs deeply one last time, searching for solace in the comfort of air, and in that moment, finding none.
And this time, I let that be okay.
May 17, 2011
This week’s Gratitude Attitude goes out to everyone who helped make my boy’s three birthday parties so special! Many thanks to our families, and also to Justin’s school, for helping make each event so much fun for him. Thank you, and I still can’t believe he’s eight!
May 15, 2011
Last week, I had the profound and fortunate pleasure to escape to Mexico with my husband to celebrate our fifteenth anniversary. Due to the grace of my mother, my father-in-law, and our babysitter, Jeff and I were able to loll around in the sun for five consecutive days, where my most difficult decision daily was when I could start imbibing the “pretty drinks” and not fall asleep by 8 PM. We happily divided our time between beach and pool, napped, and people-watched for hours. I ignored my emails, and the only time I thought about the words “Face” or “Book” was when searching for the lovely countenance of the man bringing me my next “Mango Loco”, or while reading Bossypants by Tina Fey, our comedic national treasure.
For almost a whole week I was technologically Amish. It was bliss.
We planned every detail of the trip for months, remembering to clear our schedules several days prior to boarding that godsend of a plane because we’ve noticed over the years that something, or several somethings, always conspires to occur just before we leave. One time just days before one of our fairly frequent trips to Vegas to stay with friends, Jeff took a tumble down the stairs and broke his foot, which put a severe damper on our disco nights. The following year, Justin came down with a severe rash all over his body that turned out to be “hand, foot and mouth” disease (I actually looked at his pediatrician and asked her if she was making the diagnosis up just to mess with me), and for the next seventy-two hours we watched anxiously to see if several hundred red bumps would do us the honor of disappearing.
Ironically, this time around everyone was healthy, but it seemed as if the gods were conspiring against us anyway. Jeff got a flat tire while trying to cram in food shopping the day before our departure. We finally realized that funny odor in the pantry was mouse droppings, and my brave husband dedicated four hours on Sunday trying desperately to eradicate that succulent smell before we left. I went to bed before the glorious news of Osama bin Laden’s death, but my husband spent most of the night wondering if we would still be able to depart. We were, and we did.
And I admit, it was fabulous.
Of course, not every moment of the trip was perfect. I burned a quarter of a boob when my suit apparently “shifted” in direct sunlight (the only time I’ve gone topless was for five minutes in Greece in 1988, after which my Puritan ancestry kicked in and started screaming for me to “remember decency!”). The night we ate in the “French” restaurant our waiter proudly proclaimed our aperitif to be “chicken fingers with sauce”, and while my husband beamed with anticipation I heard the strangled cry of a million Frenchmen as they screamed “Non, c’est pas vrai!!!” Sadly, we once experienced three entire drops of rain one day as my groom and I walked along the mostly deserted beach together.
Yes, I’m just kidding with that last one.
I could tell you that this vacation we try to make every five years, as we attempt to celebrate the “fives” and “zeros” of our union, is important because we desperately need the time together away from our children just so we can breathe, and that would be true. I could impart to you my adamance this type of trip occurs at least twice a decade for us because I’m neither sure how long I’ll have the generosity of my mother’s help, nor certain if there will come a day before Jeff and I turn eighty that Justin will not be solely under our care. I could share with you that I simply appreciate the opportunity to sleep four nights a year.
Hell, I could tell you that sometimes, I just like some silence.
All of the above is true. But the real reason this vacation is so crucial to us is because it’s the one time of year we feel like we actually have choices in our daily routine, because with two children on the autism spectrum, our lives don’t leave us much opportunity for wiggle room. Honestly, for several days, we simply reveled in the welcome absence of rules, the constraints that autism often insinuates into our everyday existence. I didn’t have to plan seventy steps ahead of an outing to anticipate what might strip my chances of success while bringing Justin out into the community. I wasn’t forced to recall which spot on Zach’s favorite plate always welcomes the ketchup, or be faced with a tantrum of such inappropriate proportions I’d rue the day the condiment was invented. I didn’t have to think about how autism ordains Justin’s life, how it will ultimately result in his requiring lifetime care, half of which will transpire without me.
Frankly, for five days, the only rule was that I didn’t have to think.
I realize how lucky we were to have this opportunity. I am fortunate to have the luxury of a stable partner, the understanding of my father-in-law, the stamina of my mother. The word “gratitude” does not begin to convey how grateful I am for this confluence of circumstances, this perfect storm of luck that conspired to enable us this break from an often extremely stressful life. Trust me, most of the year my “downtime” is spent sitting in the car reading for fifteen minutes while I wait for one of my kids to get off his bus. It’s not always happy hour around here.
But for 120 blissful hours (not that I counted), it was. I just want to say thanks to everyone who made it happen, and for all who wished us well prior to departure. I’ve traveled to a number of countries at this point, and I have to say I’ve never encountered a people as genuinely warm as the residents of the Yucatan Peninsula, and I certainly hope to see them all again (especially the reincarnated Michael Jackson who performed for us, who knew the legend is actually alive, just living in Mexico?).
I’d like to add one final note to my husband, a man with whom despite the oft-insanity of our lives, I still enjoy spending time.
Love you, hon. See you in five years.
May 12, 2011
The alarm goes off, that damn clarion call to consciousness, and I am abruptly jolted out of a dream that managed to incorporate Conan, dinosaurs, and classmates from high school (not that I’m implying we’re dinosaurs, these are just my DREAMS, people). I toss off my sleep-deprived musings and shuffle to the bathroom, making a quick stop at my bedroom door that’s always slightly ajar so my husband and I can hear Justin should he need us in the night. All is quiet on the western front, and as I prepare myself for the day, running through the twelve things I need to do before my offspring even make it onto their respective busses, the thought hits me.
Oh my God. All is quiet on the western front.
You should know that along with death, taxes, and the imminent broadcasting of a new reality tv show in Jersey, Justin is certain to herald his wakened state to the world well before 6:00 AM every day. Jeff and I take shifts, he taking the middle of the night/wee early hours (this usually involves a trip to the bathroom with Justin followed by hugging, singing and a cajoling back to bed of Kumbaya proportions), and me taking dawn and onwards so my tired spouse can return to slumber. Zachary, thankfully, seems able to sleep through the Apocalypse, so it’s really just the three of us to contend with when the moon salutes us in the sky, and for that I am grateful. Neither I nor my husband is really in full family mode at 3:00 AM. We have our limits.
And usually, when it comes to sleeping in, so does Justin.
Although it’s rare that morning arrives and affords me an unconscious child to spy upon, I’ve still managed to perfect the art of avoiding those creaky floorboards just adjacent to his room, and mastered the technique of turning his doorknob just enough to gain entry to what I like to refer to as his womb with a view. It takes a few seconds for my eyes to adjust to the almost feral darkness we’ve created for him to promote sleep (not just for him, for all of us), and I take care to wait until I can safely avoid the littered landscape of his carpet successfully. I wait silently as my ears acclimate to the soothing sounds of white noise and air purifier, the machines that manage to drown out the cacophony of Justin’s younger brother as he talks his way into the night next door.
And then, I spot him.
His head and feet have made their own attempt at trading places during the course of the night, his torso splayed smack in the center of his mattress so that his body forms an almost perfect half of an “X” under his sheet. Justin’s pillow is dangling precariously from the footboard, straining to safety on the floor below. Somehow he has managed to cocoon himself within every soft piece of linen available to him, from his cousin’s sleeping bag, to the three blankets we provide him both for warmth and comfort. All I can see of him at this moment is his little face inching out of the “fishy throw” created by Grandma. He is completely at peace in his sonambulance, quiet save for a slight snore, a gift provided by those dreaded spring allergies. He is remarkably still.
And I wonder, how I wonder, what he dreams.
I am fully aware of the content of his sibling’s nocturnal wanderings, which invariably involve trains, presents, and bossing us around. I ask Zach about them every morning after he’s completed his lengthy rouse from slumber, and he is happy to regale me with his nighttime reveries, in which he generally presents as the hero. Once, he said he dreamt that Christmas was coming four times this year, and I quickly squashed that hope, grinding it into dust with the heel of pragmatism, as clearly Santa can’t make a trip around the globe each season.
Never too early to inject a little reality into a pre-schooler’s day.
The truth is, I am unlikely to ever know what events and thoughts infuse my eldest son’s dream state. I’m not certain if his musings focus on equine pursuits or popcorn, pretty girls or unlimited computer time. He may never be able to tell me.
Hell, I’m not certain he remembers his dreams at all.
One thing I am certain of however, are my dreams for him. There are those practical ones, which involve a stable as a full-time job, and a safe residence during his adult life. I envision for him a continuation of what I hope he feels is an engaging childhood, and a deep wish that his crush around the corner will never move out of her home. These are, of course, the realistic goals that haunt me daily, and sometimes have a strangle-hold on my dream state as well.
But I have more ethereal wishes too, intangible to touch, yet every bit as compelling as those I can actually see. I dream for him a life in which those who interact with him extend him only their empathy, and kindness. I dream for him a community in which he is viewed as just as human as everyone else, a complete person capable of the full range of human emotion. I dream for him a world in which not only are his gifts utilized to their full potential, but that his presence in it is seen as a benefit to all, not a hindrance to be endured.
My internal clock ticks, and I cease my musings and tiptoe backwards to the door that remains slightly ajar, his stale-sweet breath lingering in the air around me. I will return here soon to cajole him into our universe so that he may greet the day, but for now, I permit him rest. I allow myself one last wish for my eldest, my boy, my heart.
I dream he will always be loved.
Happy Birthday to my beautiful eight-year-old (!) boy!
May 11, 2011
A couple of months ago I wrote a “pre-review” about a book called “The House on Hurley Pond Road”, written by a compelling local author named Darren Fitzgerald. I “plugged” him prior to reading his actual work because he has generously deemed a portion of his profits to POAC (Parents of Autistic Children), and when I found out he’d be at the first POAC walk-a-thon, I hoped the post would encourage people to take it upon themselves to meet him. I’ve since had the opportunity to actually read his work (I ordered it all by myself on Amazon, I know you’re proud), and would just like to say a few words about the writing now that I’ve had the pleasure of perusing his book.
Frankly, it scared the crap out of me.
As I mentioned before, I’m no newbie to the horror genre, having read multiple Stephen King books to their tattered ends as an adolescent, and I’ve steeled myself through any number of terrifying movies as well. I’ve never quite gotten over Linda Blair’s psychotic twirling (a fear only intensified while living a mile from the Georgetown apartment in which it was filmed), but for the most part, I’m fairly immune to the “scary stuff”. This time however, I’m not sure if it was the writing style, which was compelling, or the constant action, which was riveting, or the fact I drive by the street in which his house was located at least once a week. The truth is, I couldn’t put it down, didn’t even skip to the end to see what I predicted would be a horrifying outcome, as I am wont to do.
Honestly, I ignored my kids to finish it.
For the most part, my ability to read is confined to a period between 8:30 and 8:45 PM, that vast expanse of time which encompasses two (in theory) sleeping children, and my last remaining minutes of coherent consciousness (suffice it to say, Barnes and Noble isn’t making much money off of me these days). It’s not really possible for me to read when the kids are home, what with Justin needing constant second-to-second surveillance and Zach constantly asking me to take on the role of various dinosaurs I’ve never heard of, but for this book, I broke all the rules. I brought it into the laundry room with me between loads, and stole a couple of minutes there. I engulfed a few pages while playing hide-and-seek with my youngest (guess who got to hide, and who got to “count silently” in her head). Of course, it came into the bathroom with me, and on more than one occasion my husband had to rip it out of my hands so he could “tell me something” (but really, what’s more important than poltergeists?).
Clearly, I loved it.
Darren, who is not only a contributor to POAC, but appears to be a really nice guy (and if I’m going to blow off my kids to read somebody’s book, that’s important to me as well), will be promoting his work at the Monmouth County Mall’s Barnes and Noble on Saturday, May 21st, at 7:00 PM. If I wasn’t putting my own little demons to bed, I’d be there, and I encourage you to make the time if you can to go say hello, and purchase his book (if you dare!). It’s nice these days not only to discover a good read, but to know the author behind it is a good person too.
Thanks again Darren for contributing to POAC, and best of luck!