August 31, 2011
Gratitude Attitude
This week’s Gratitude Attitude is twofold. First, to our families who offered to house us, board up our home, and act as escort across the state post-Irene, many thanks. Second, my most heartfelt gratitude to the Haftel family, for sheltering us, giving Zachary the time of his life with his cousins (he’d prefer to live there now), and most importantly, for helping me weather the storm within that was Justin. Thanks to everyone!
August 25, 2011
Horsing Around
It’s 1:59 PM as I turn down the long drive to Justin’s horseback riding camp, and I’m sweating bullets because my son will be performing promptly at 2:00 whether I’m in attendance or not. I’m chastising myself profusely for succumbing to a “bargaining game” with my youngest before I left the house, a choice I made to engage in a ridiculous discussion as to why I had to leave him for the first time in hours, a decision which has subsequently almost made me late. I force myself to slow down as I enter horse country, remind myself that I am here after all, and that my inner compulsion to be ten minutes early to everything is my issue, and not necessary for Justin’s happiness at all. I find an empty spot next to my mother’s car, I watch her put away the phone she was about to use to find out where her usually prompt daughter could be, and exhale.
I decide to let go of “bad mommy” and enjoy the afternoon. This turns out to be a better choice than the one I made while trying to placate my other son.
Grandma and I turn and approach the barn, and I see Justin hanging over the gate, grinning ear-to-ear, ecstatic to see us both. My eldest carries a deep and abiding affection for his father, but he’s always loved his girls, and having us together in one place pretty much constitutes nirvana for him. Couple our presence with the fact he’s going to get to ride a horse again AND perform for us, and my son is pretty much on the moon at the moment, literally eager to get on with the show.
His “women” can’t wait either.
Last summer I wrote about his first foray into horseback riding camp, and I felt compelled to scroll back through my blog and get a sense of where we were then, and where we reside now. I recalled that we had just come off of several months of intermittent illnesses, which ramped up Justin’s OCD considerably. I myself was still battling what I like to call my “annual bronchitis dance”, which generally renders me just ill enough to be annoyed for eight to ten weeks, but remain (marginally) functional. If I’m being perfectly honest with myself, last June I wasn’t in the best of places emotionally from dealing both with Justin’s recurring ear infections, and from being at half-mast myself.
I recall that as I took my seat next to my mother on the unforgiving wooden bench to watch Justin and his horse enact their maneuvers, that I was anxious, and profoundly tired. I recall having to avoid his outstretched hand as he shuffled past me to his steed, because if we made contact he’d be straining to lead us both to the car to start our journey home. It’s a 90 minute round-trip twice a day to this farm, and the sheer logistics of getting my eldest here while figuring out what to do with my then three-year-old had just about combusted my already illness-addled brain.
In other words, come hell or high water, mommy was going to get to see a damn horse show.
In my now (relatively) clear brain I retrieved all of these details as we strode up to the entrance, but this time my son eagerly places his hand in within the circle of the outstretched fingers of the volunteer waiting to escort him to his ride. He straddles his equine friend with ease and begins to perform, the walking back and forth across the barn that now includes him navigating with the reins, as well as the subtle kick required to spur his horse into the trot he so adores. He appeared more in control this year, and his execution of the tasks at hand were slightly more demanding of him than last year’s tricks. I’m told his “seat” is improved, that he sits up straighter in the saddle, is more in harmony with the rhythm of his mount. All of these nuances, these signs of progress are wonderful, so worth the schlepping and the logistics to get him here.
But the real story is his smile.
A year ago he was compliant, happy to perform, and equally content to leave the premises at the conclusion. I had a few shots where I was rewarded with his pearly whites, but generally he was very serious, more sober in his demeanor as he paraded around this old wooden structure. It’s important to me to get a few photos where he demonstrates his joy at each event we take him to, not because they’re “prettier” depictions of him, but because at his core, his is a joyful soul. I’ll do just about anything to get those photos, have been known to evoke Elmo, sing “Twinkle Twinkle Little Star” in falsetto, and contort my body into ridiculous positions to evoke a slight smile, the latter decision being one I generally deeply regret later.
This summer, summoning Cirque de Soleil was not required.
Justin literally didn’t cease smiling the entire show, nor did he stop making eye contact with me or my mother, making certain we didn’t miss a single second. I have it all on video, as well as on our digital camera. I literally had to sift through the stills for this piece just to pick the best ones, and there were so many to choose from, it wasn’t easy. My boy loved every minute of his time to shine. At the end, when I asked him to stand next to the lovely teen-aged volunteer who’d been his virtual shadow all week, I didn’t have to prompt him, or ask twice. He simply sidled into her and draped one arm casually across her shoulders, and flashed that ecstatic grin which means the world to me.
Then he grabbed my hand, and gave me what I’ve come to call “the get me juice now woman” look.
Small steps. Progress. Joy in sharing a moment. It took us almost eight years to get to this place, and it’s been worth every minute of fear, effort, frustration, and sacrifice. My boy is really, truly, happy.
And that reality is really, truly, something.
August 23, 2011
Swim Day
I aim my lens toward Justin as he strides energetically through the doorway to the pool grounds, lagging slightly behind the rest of his class. He immediately sees me, my mom, and my aunt, and stops short so suddenly that he forces his aide to bump into him. His grin upon recognition is luminous, and I can literally see his body vibrate with joy as he resumes his pace and quickly steps through the gate toward waiting water. I’ve captured the moment on film of course, his sweet smile imprinted upon our memory card, and my heart. As he follows his usual routine and makes his way to the bench I watch him wistfully turn his head back our way, but he knows what he’s supposed to do. Since he’s a good boy he resists running over for hugs and kisses, and sits dutifully down on his spot.
Throughout the next half hour of Justin’s school swim day, he barely takes his eyes off of us once.
I’ve been thrilled with the aquatic progress he’s made this season, my boy who until two summers ago refused to immerse his face in the chlorinated depths of our own pool, and often refused to go in at all if the temperature wasn’t to his liking. Now at the slightest of prompts from his aide, he slides off the side into waiting arms, and “performs” his new skills. What follows, among other tricks, are my son’s clear attempts at blowing bubbles, an activity which he has previously despised. A kickboard is wielded with perfect accuracy for minutes at a time, a feat which amazes me since I still can’t convince him to use our own. Eventually his instructor gently props and propels him with strategically placed hands on my son’s belly, and I see my boy straining to coordinate his moves, hands paddling and feet mildly disturbing the pristine surface. I unconsciously hold my breath as he is released and witness his subsequent submersion, as well as several seconds of him actually swimming underwater, truly trying to move forward.
That’s the thing about this kid- he has always, always tried to move forward.
My mom and aunt echo one another in their enthusiasm, and my boy regards us almost shyly as he pushes himself out of the water with a little help, and perches once more on the unforgiving concrete. I am hard pressed at this moment to decide which detail has made me the happiest. Fortunately, I don’t have to pick between his newfound pool prowess, or his exuberance at recognizing favorite family members. I won’t have to select between the fact that he wasn’t attempting egress within seconds of seeing us, or the fact he cared we were there at all. I don’t have to choose, can simply revel in these hard-won points of progress.
For once, Mommy can have it all.
August 19, 2011
Oh Brother
I feel the soft weight of a juice box bounce off my shoulder, and as I slow down to adhere to the rules of the red hexagon before me, I turn around to confront the offender. I am quickly rewarded with a “Sorry, Mom” and a sweet smile that dissipates the rush of annoyance I’d felt upon contact, and I remind myself that Zach’s four, and not yet the most accurate shot. I look him in the eyes and say “Zach, Mommy’s said a thousand (million?) times that when you’re done with your juice, just put it down next to you, don’t hurl it at Mommy’s head”.
He looks sheepish again and responds “I know Mommy, it’s so hard to remember”, and I think to myself ‘no kidding hon’, as I turn back around to ease into the intersection. It’s quiet for a few moments as I search for songs on Sirius, then the peace is broken by a small voice from the back asking “Mom, is ‘David’ like Justin?”, and I grip the wheel tighter, because this is the first time he’s ever asked me anything specifically about his brother.
Apparently, the question and answer portion of his childhood has begun.
We’d just finished a playdate at my friend’s house, a lovely woman who also has two boys on the spectrum (we’re just all autism, all the time). One of her sons presents much like Zach, and one mirrors Justin somewhat in the trajectory of his development. So far we’ve always gotten together when both of our older, and more affected offspring, are still in school.
But it’s summer now. While I have Justin gratefully ensconced in his eight week program (oh, the happy dance conducted when I discovered the miraculous length of this agency’s summer school would have gone viral on YouTube), my friend’s older son is now home for the duration. This is the first time Zach or I has ever met her eldest, her firstborn who is as sweet as she has claimed him to be. He spends some time with us for a while, participating on the edge of the crowd, uttering the occasional familiar vowel sound that replicates Justin’s repertoire, causing Zach to look at him in surprise.
And I admit on occasion, despite knowing my son was safely in his school, that this elongated “e” made me question Justin’s whereabouts as well.
I bring myself back to Zach’s query, because I want to answer this casually, but carefully. I look into the rearview mirror, take a deep breath and say “’David’ is a lot like Justin. ‘David’ and Justin both have autism, and they both say “eee” often”. I wait for his reply, and I know it will be a few moments as he processes, because he always takes his time with these sorts of conversations.
“Mommy, what is autism?” he asks, a question he’s put to me many times, and one I hope I answer in a manner which he can comprehend.
I trot out “Autism is what makes it hard for Justin and some kids to talk and to play with each other”, which has been my pat response each time. When I taught, I always tried to get inside my students’ heads with the big questions, tailor my answers specifically to information I thought was appropriate, and relevant to them. I’ve adopted this strategy with Zach as well, and I feel so far it’s worked. At least there’s never been a follow- up question before, so in the past I believe I’ve satiated that inquisitive little mind, because his next interrogative has usually revolved around dinosaurs. This time however we’ve moved on to deeper waters, because I hear him say softly “Will Justin ever play or talk with me?”
When my heart resumes beating, I know I’ll have to respond.
I remind him that Justin does “talk” with him sometimes, that his favorite letter of the alphabet often signifies excitement over a new toy he’s showing to Zach, or mere happiness that they’re in each other’s presence. I recall for my last born how we often have “book club” together in the family room, an event in which Justin usually permits Zach to splay at least half of his body across his older brother as long as they’re both cocooned in our “reading blanket”. I continue my narrative with reminders that all four of us now play “chase” at night, a game in which Zach usually wins due to those supernatural speedy legs. I summon these examples as offerings, hoping they placate and sooth, and seemingly, they do. I regard him once more in the rearview, and watch him settle back into his seat and comment, “Justin is my best friend, can you buy me another Transformer?”, which mirrors the split nature of much of our dialogue these days. He appears satisfied with my responses.
At least, for now.
I have friends who are entering the more challenging portion of the inevitable “Q and A”, and I let them regale me with their stories when I can. It seems siblings’ responses represent a wide spectrum in and of themselves, with some very distressed upon learning their teen-aged brother will probably never talk, and others seeming to take their siblings’ differences, and potential life outcomes, in stride. For most families there appears to be a see-saw reaction, one which demonstrates tolerance, irritation, indifference, or sadness, often all in the same day. Not for the first time, I wonder how things will play out here.
And yes, the sibling bond is not the only thing I wonder about either.
Zach asks for pretzels even though he knows I’m driving, and digresses to yet another discussion of the merits of Diplodocus and his favorite, Tyrannosaurus Rex. I relax, knowing once again we’ve returned to safer territory. For the millionth time I wish once more for a guide to help me with the answers to these questions, because I know the tougher ones are coming, a reality as inevitable as the fact that both boys are growing up faster than I’d like. I also have a sneaking suspicion that one day, many of my youngest’s queries will start with “why”.
And your guess is as good as mine as to what I’ll say then.
August 14, 2011
Adventure Trio
The T rex throws his head back in a gigantic roar, tail sluicing through air at what appears to be a dangerous velocity, at least to my slightly cowering but curious four-year-old. He is safely folded into my husband’s arms, mere feet from eye level with the beast, telling Jeff firmly this dinosaur is “just pretend”, which I believe he whispered more to reassure himself than his daddy. He twists his torso back to me and shoots me a look that implies he can’t believe he’s here, and I return the favor, because I can’t quite believe it myself. The three of us are at Atlantic City’s Showboat Casino “Dinoshore Museum”, which is only one of several adventures this McCafferty trio will be embarking upon today.
Because today, in case you didn’t see it on Comcast or CNN, is the first annual “Zachary Day”.
In the past four-and-a-half years there have been plenty of “Zachary mornings” or “Zachary afternoons”, most of which have occurred because Justin was in a full-day educational program before his little brother was even born. Zach and I have experienced a myriad of day trips together, outings where we’ve conquered my youngest’s sand aversion and trolled the Jersey shore for sea life, or explored any number of the Garden State’s museums. Said excursions, to my surprise, have even included one where I permitted tarantulas to traverse my arm just to impress my kid. We’ve had wonderful pieces of time together, but never an entire day, and particularly never an entire day that included his dad. For years there were too many other pressing concerns to consider, like wondering if any of us would ever get a full (or hell, half) night’s sleep again, or would my oldest deign to eat once more, etc., etc. Day trips to enable Zach to have special time with his parents were not of the highest priority.
But now, they finally are.
I will tell you that some of the joy of this day was seeing my son’s exuberance at learning there’s a place dedicated entirely to the discovery of his favorite hobby, that watching him sift through sand for fossils and marvel at reproductions of monoliths long sent to the grave was an unparalleled thrill. Our ability to sit afterwards with Jeff’s aunt and uncle “of the heart” for forty-five minutes and chat like any other family also seemed miraculous to me, because my son entertained himself, and only asked to go on his next adventure as the full hour came to a close. I could share with you that the highlight of the day was witnessing Zach’s enchantment with the Ocean City boardwalk, that Jersey shore icon which holds a unique place in both his parents’ hearts. I could tell you I simply loved watching Zach revel in its sights and sounds, and the fabulous Thomas the Train ride which wended its way through the amusements at such a height at times it seemed we would scrape the sky. I could tell you these things, and they would all be true.
But if I’m completely honest, the real thrill was a day without the constraints of Justin’s autism, and one devoid of guilt for feeling that way.
Don’t get me wrong. Zach still presents a challenge (he is four, and a boy, after all). He remains mildly on the spectrum, which for him presents as episodes of moderate anxiety, a need for order, and an impulsivity we continue to attempt to reign in without crushing his exuberance for life. He’s made tremendous progress in these areas, but there’s still work to be done. It appears that Jeff and I do not bear the easiest of children, which perhaps is fair, as it turns out we’re not the easiest of adults.
But today, at least for one day, we were able for once to go with the flow, not plan out every move as if we’re negotiating territory on a life-sized chess board. We made spontaneous decisions (!), took our time, and didn’t regard our watches for hours. Zachary adored all of his adventures even without a set plan, adventures that would have been met with varying degrees of disdain and disgust by his brother. My smallest son had his own day, just a day with his mom and dad. I knew his brother was far happier at school with grandma as the day’s chaser, so for once I didn’t question whether or not he was missing out. I reminded myself that it’s important for Zach to have his own time, and that it’s alright not to include Justin in everything. He had his “own time” for four years before the arrival of the interloper. It’s Zach’s turn now, and it’s my turn to finally let myself feel good about it. It was just a day, nothing special in its makeup to most families.
But for us, I know just how unique it was. And Zach, we can’t wait to do it again.
August 11, 2011
Slumber Party
The phone rings, just as I’m trying to decide if I still care enough about the boys of Entourage to see the last season through. My husband fumbles for the remote and grumpily comments, “Who the hell would call us at 10:30 on a Friday night?”, and I just stare at him, because I know exactly who’s attempting to connect with us. I check out the caller ID just to be sure, and it is indeed my mom. I look up at Jeff and say “It’s Grandma”, and I can see for just a fleeting moment he’s forgotten that Justin’s at her house for the night, or at least, that had been the plan. I press “talk”, which is the last thing I want to do at the moment, and listen as my mother tells me my son has literally packed his bags, and clearly wants to leave. She assures me she’ll keep trying, but I know the jig is up. In a few minutes he’ll be yawning as grandma’s car hugs the coast, and he and his new Toy Story suitcase bought specifically for this occasion will make their way home together.
It would appear my son’s first sleepover in six years will end before Letterman.
I have to admit, my first reaction upon returning the receiver to its precarious perch on our coffee table is intense disappointment, infused with a smattering of guilt. Justin has made so much global progress over the last year-and-a-half that I truly thought this staple of childhood, or more accurately, this staple of my childhood, would be available to him now. Over the past year he has learned to sleep through the night (most of the time), and traded temper tantrums for acquiescence (again, most of the time). Due to maturity, and mostly his own desire, the world at large has finally seen the personality I always knew existed at his very core- a happy, joyful temperament. I truly thought he was ready for this. His father thought he was ready for this. His grandma and her partner went to great lengths to ensure this night would work.
But unfortunately nature called, and my son answered. Apparently, upon deeper examination, even a bed with his own spaceship sleeping bag and extra-soft pillow on it is still not his own bed.
For a few moments I am mired in regret, wondering if we missed the window by having him home every night since he was two. Our collective decision wasn’t from a lack of desire to see him slumber elsewhere, trust me. During what I lovingly refer to as the “coma years”, I would have delighted in shipping him off for an evening (or three), but we just couldn’t inflict that particular torture on anyone, and quite frankly, there weren’t a great many offers either. His inability to make it through the night, coupled with his little brother’s regression and subsequent plunge into his own heavy-duty therapy years, forced us to put vacations, or even nights at grandma’s, somewhat permanently on the back burner. We were in survival mode. Pleasure seemed an elusive, unreachable link to our past.
As quickly as these negative thoughts enter my consciousness I banish them back to the dark recesses of my mind, where other thoughts of similar nature reside but don’t see the light of day nearly as often as they used to. I remind myself that our family has done the best we could , given both the circumstances, and the resources, available to us at the time. I tell myself that one aborted sleepover does not mean the next decade (or decades) will require my son to snore solely in his own bedroom. Our impending trips to Hershey Park and Disney are not necessarily defunct, just because my son couldn’t make it in another locale until midnight. I chastise myself to chill out, as I sometimes need to do, because life here is much more manageable, and the future is still ripe with possibility.
I smile, because for years I didn’t feel I had much of a choice in how I perceived the daily events of our life together. Now, thankfully, I feel I do.
What seems like hours later, but in reality is only the length of another episode of our selected HBO drama, I hear the soft slam of a car door on our otherwise silent street. I listen to feet padding quietly up to our door, and Jeff opens it, allowing Justin reentrance to his own domain. I slide from the couch to my knees on soft, yielding carpet, and my boy sees me, eyelids heavy with fatigue, the last remnants of a yawn twisting his face. Justin drops his pillow, and shuffles my way. He drapes his arms over my shoulder, relaxes his lithe form, and literally slumps into my body. I gently ease him down to the floor so we can return him to his discarded pajamas, and my husband bears the weight of him back to his own room. I quickly hug my mom, and head upstairs with sleeping paraphernalia in tow. I make it just in time to see his sleepy but brilliant smile flash briefly, his eyes watching me gleefully as I unfurl his colorful comfort onto his familiar mattress. He snuggles in, and pushes my hand away as I gift him the quickest of kisses. I carefully make my way out of darkness, and into the light.
And it occurs to me, even with these small, still frequent setbacks, this family is finally, and I hope firmly, entrenched in the light.
August 9, 2011
Gratitude Attitude
This week’s Gratitude Attitude goes out to Grandma and Aunt Kate, for attempting Justin’s first sleepover since his toddler years. Even though he ended up returning home, it was a great first step. Fingers crossed for next time!
August 7, 2011
Brick by Brick
It’s 6:15 on a Saturday morning, and I’m stumbling around the kitchen more than usual at this early hour because I stayed up late to catch up on the Big C last night (truly, are there many actresses more fabulous out there than Laura Linney?), and I know I’ll be paying for my choice all day. I drop Justin’s toast butter side down on our cold tile floor and mutter expletives under my breath for only my ears to hear, then trudge back to the refrigerator to start the process all over again. I call to my son once again to come to the table, grumpily insert a second piece of bread into our toaster, then head to the living room in the hope of luring Justin in for his least favorite meal of the day.
I’m on the threshold of kitchen and living room when he breezes by me with a box in his hand, grabs the juice waiting for him on the counter, then sits in his chair and turns to me expectantly as if to say “Woman, my meal is usually waiting for me, what’s going on here?” I have to smile at the look on his face as I rescue his whole grains slice from an imminent charring, and head over to serve him.
It appears that instead of his DVD player, his usual companion, today my child has selected a box of Legos to accompany him. This box contains a myriad of plastic pieces that if assembled correctly will create a fire house for a tiny, but beaming, Elmo figure. I’ve witnessed Zachary create this contraption many times, generally in locations throughout our home where me and my husband have usually tripped over it. Justin has never shown the slightest bit of interest in its contents other than the occasional twirl of an errant plastic piece, so I’m a bit curious as to what he intends to do with the set.
I place his favorite plate in front of him and urge (beg) him to eat, then settle down next to him, as sometimes cajoling him in close proximity gets results. He pushes my handiwork away (and given my culinary skills, I really can’t blame him), and dumps the open box out on the table in a fairly controlled fashion, with only a few red rectangles sliding to the floor. He looks at me. He stares at the Legos. He looks back at the box, grabs my hand, extends my pointer finger, and jabs it at the picture.
It would seem, for the first time in, well, the history of his existence, my boy would like to build something.
It’s not that there haven’t been attempts at construction over the years, but in general, all forays into the world of building have been met with either great disdain, or a caterwauling cry of contempt that should have woken the dead. Over the years alphabet blocks, huge plastic cubes, and my personal childhood favorite, Lincoln logs, have all been relegated to the slightly dusty recesses of our toy closet, mostly in the hopes that our second child might exhibit some interest in playing with them.
To our delight, Zach has enjoyed them, and proven himself rather adept at handling them. There remains only one contraption for which our eldest ever displayed the slightest bit of pleasure. Its main purpose was to convey multi-colored marbles through convoluted configurations I was never spatial enough to form correctly, and even then, Justin’s approval of it was limited. I recall that once when I’d conscripted Jeff to construct a particularly complicated adaptation, the entire thing collapsed around us. To this day, I believe I can still summon the howls from our son that accompanied it to its demise. I’m pretty certain everyone in our lovely suburban neighborhood probably could as well.
At the time, we decided to put his future as an architect on hold.
But today it seems my son would like to build, and together, as his abandoned breakfast grows cold, that is exactly what we do. He tries to make me do it, which despite the fact that this activity is geared toward a three-year-old is laughable, but I persist in encouraging his independence. We begin from the ground up, me pushing his fingers toward specific pieces, then gesturing toward the photo. It is slow going at first, but eventually he is conquering doorways and window sills, attaching a roof and a garage with ease. The frame is slightly askew, and at the end of the activity it seems a flower pot may not find its appropriate home, will instead remain perched precariously on a ledge at the insistence of my son. Of course, I let it linger there. After all, who am I to interfere in the creative process?
When he finishes he brings Elmo into the fold, positioning him carefully in front of the entrance to the fire house, glances briefly at me with what is clearly a look of intense satisfaction, and grabs a piece of slightly overcooked bacon. I’m still slightly stunned by our morning activity, and as I always do, I run for the camera before our creation is destroyed and snap away for evidence. I sit back with my Coke90 and contemplate the scene before me, regarding my son who has already moved past his architectural desires and is, to my happiness, consuming his meal.
One of the most difficult things for me, in the constant push and pull of a life with autism, is trying to tease out which activities Justin would truly enjoy, and which are simply beyond the scope of his pleasure. I never want him to miss out on anything, yet want to remain cognizant of the limitations of his interests as well. His father and I are contemplating having him groomed for the equine portion of the Special Olympics, despite my fears that when he sees a strange venue, he’ll balk at participating. Every year when POAC holds its surf events I manage to get that struggling child to at least stand on a board, because he loves those amusement rides so much, and one day the urge to ride the waves just might kick in. We give it our best shot as a family to include him in everything possible. Ultimately, the hope is that like bowling or horse-back riding, something will click, and perhaps a lifelong passion will be discovered. Particularly with this child, since we can’t ask him his interests, we’ll never know unless we try.
And maybe, if we’re really fortunate, there will be other days where Justin himself shows us the way.
August 3, 2011
Twistin’ By the Pool
This past weekend Jeff and I hosted our annual summer pool party, an event which pretty much encompasses the entirety of our entertaining forays for the entire year. It’s not that we’re anti-social, it’s just that it’s been complicated at times to host people, provide food and a modicum of decent conversation, and simultaneously keep both of our kids alive and reasonably happy. Recently however, in fact just over this past year, both boys have finally decided their lives are pretty fabulous after all. Since their behaviors have been seriously reduced, we’ve had the energy to invite people over more frequently, for what we sincerely hope passes as “a good time”.
At least, that’s the goal.
I’m fairly certain we achieved that milestone on Saturday, what with the almost sauna-esque pool water, crystal clear skies, and abundant wine and cheese our NY friends tote with them annually that I swear tastes better than anything we could procure in Jersey. For once the parkway gods were kind, and traffic didn’t plague either family as they wended their way down from northern regions. All seven of our progeny played well together, which is lovely for them, and most importantly, allows the grown-ups the chance to reconnect and relax.
Which, despite the pretense of having a pool party for the kids, is really why we hold this bash in the first place.
Most of the people who graced our outdoor tables this weekend have known each other for over twenty-five years, with myself and one spouse constituting the “new-comers”. Trust me, it’s a bright crowd, constituted of two brilliant lawyers, a spouse in telecommunications, and a woman who does something with money in three languages and fifty countries that my little blond head will surely never comprehend. If you think I’m selling myself short, you should know that for the space of several seconds this Saturday I couldn’t remember whether or not our house has Wi-Fi, and that was prior to the second wine cooler.
I look forward to this little fete we’ve carried off going on six consecutive summers, in part because the conversation is generally scintillating (keep your wits about you if you want to keep up). I also enjoy it in part because it’s a glimpse for me of what my husband must have been like in college, pre-autism, pre-employment, and pre-responsibility. I love watching the weight of the world, his often very difficult world, slough off his shoulders even for just a few hours. I’ve also come to enjoy this event so much because their comes a point in every marriage where either your spouse’s friends become yours too, or they are forever relegated to the polite but cordial corner of “Jeff’s college friends”, etc. Fortunately, we transcended that barrier years ago.
Should Jeff and I ever divorce, I would insist on shared custody.
There are more serious reasons why I anticipate this annual gathering however. The one that comes forefront to my mind is that for years the mainstay of our conversations with these couples revolved around autism, its issues, its conundrums, and most importantly, the devastating effect it was at times having on our family. None of the adults have more than a passing connection to the disorder in their own respective lives. Despite this fact, they’ve shown us such an abundance of compassion, and yes, comprehension as to its import for us, that it lifted our burden just a little, even for a few short hours. Collectively they asked questions because they truly wanted to know how it was for our family, how the boys were, what the daily rigors of this chaotic life often entailed. They really wanted to know if we were coping. Sometimes we were. Often, we were not. Either way, kindness, acceptance, and a genuine offer of “we don’t know how you do it” were always offered at table.
At our last soiree one of our crew (who writes such a fabulous Christmas anti-missive it’s worth befriending him just to be on the mailing list), felt deeply inclined to pen his ideas on how best to help families through the ordeal of autism. He promptly returned home, ruined a good night’s sleep for his lovely spouse by rousing at 3:00 AM, and created one of my best “guest posts” ever, right up there with the erudite contributions of Susan Senator and Jess from Diary of a Mom, and that’s some elite company. In general, I prefer not to recycle material. This piece however is pretty fabulous and worth repeating, particularly as I abandoned Guest Blogger Thursday a while back due both to sheer laziness and a lack of desire to harass people. It won’t be resurfacing again, and I think it should have its day once more.
So to our friends, and particularly to Brian, “Salut”, and thanks for your continued friendship, and especially these words.
Today’s guest blogger is Brian Carr, a family friend, lawyer with a heart, and an exceptional writer to boot. Brian (and his lovely wife Jeanne) were two of the innocent bystanders I conscripted to read my original manuscript last year, and the fact that they still speak to me is a testament to our collective friendship. There are some wonderful insights in his missive today, and frankly, I think multiple copies of the second portion of this piece should be dispensed to all parents whose children receive an autism diagnosis so they can pass them out to friends and family (it’s just that good). Many thanks to Brian for giving up sleep to write this (I would never be that nice), and enjoy!
To Guest Blog or Not to Blog. By Brian Carr
“How’d you like to guest blog?” Kim asked my wife and I. That hadn’t taken long. We’d barely sat down with a drink and some chips, having shunted the kids to the pool, when Kim was already asking this question.
I suppose it was my own fault in a way. Saturday was our annual pool party pilgrimage to Jeff and Kim’s house. This month my wife Jeanne and I will have known Jeff for 25 years (since college) and Kim for maybe five years less. It was our job to bring the cheese and whatever else old college friends can offer. Mostly relaxing, casual and clever chat, the easy conversation you slip into with those who knew you before you had to pretend to be adults, when ill-conceived escapades ended up on as fond but secret stories, not broadcast on Facebook to future employers and the world.
It was my fault because Kim asked me how I was doing, and I’d tried to generously volley, saying, “Fine, but how are you? – I’m not the one pushing the rock up the hill.” After a short update on her blog, out came the guest blog question.
Guest blog? Was she honestly asking me to do something just 15 minutes after getting here? Wasn’t it enough that I’d spent the early afternoon the last place I wanted to be, stuck on the Garden State Parking Lot, crawling through traffic all the way from New York. Our two girls 11 and 14, were keen on their pool, but surely there has to be a pool that doesn’t require a 5 hour round trip. But it was a trip I made happily, if grumpily as we sat in traffic, a slog relieved only by a high speed motorcycle/state trooper chase up the breakdown lane, the only possible place to get a speeding ticket that day. The cops are probably still writing tickets.
“No,” I said, pretty quickly, “I don’t know anything about autism and I’d have nothing to say.” Subject changed, we spent 5 or 6 hours of enjoying beers, burgers and good company, then headed back to New York. Around 2 am I woke up, thinking about the guest blog thing. Ideas? None. What do I know about this?
I’d managed to write something before which was helpful, but that was totally inadvertant: our Christmas-time family “newsletter” 5 years ago. I wrote it because…. I hate family newsletters. Which is why mine explained that I’d had such a bad year, having read in their holiday missives how wonderful everyone else’s lives were, about their great jobs, vacations and most of all their perfect kids. The sense of inadequacy, I explained, was driving me to drink, what with my wife who was tired of me, our un-exceptional children, disappointing vacation and generally dull life. After 2 pages of moaning, I concluded by saying that, “while things could always be better, we remain hopeful and most of all thankful, especially for our kind, forgiving, self-actualized friends. From your newsletters we only hope to glean the missing clues to a happier New Year.”
We got three reactions to this little stunt. Some thought it was funny. One couple, close friends, immediately called, offering to help put together an intervention. Seriously. We’re here for you, they said. Which they are, bless them. (Just for the record, they’re earnest newsletter writers. Most earnest.) And then there was Jeff and Kim.
They dubbed it one of the highlights of their year. Almost at the end of their rope from dealing with Justin’s diagnosis, they explained that, that year at least, the circumstances made it too painful to read the otherwise welcome news about everyone else’s children. Hearing about someone’s comic disappointment on the other hand – the first we’d laughed in ages, they said. And so it was that I got to be useful again to them that night, just by listening for an hour or so over drinks in a New York City bar on a rare early day away from Justin, as they described their weariness and isolation from having to tend to Justin constantly, the endless bureaucratic struggles for his care, and how I’d accidentally been helpful in print.
But what to say now? About the most I’d had to offer Jeff and Kim directly on topic was early on, putting them in touch with a former high school girlfriend and her husband whose oldest son was autistic and who were very involved in research fundraising. If nothing else, it was someone farther along in dealing with the situation who might offer some words of knowing advice.
Maybe someone could offer a few thoughts about how to interact positively and help out a friend or acquaintance with an autistic child. After thinking a moment, I had to assume this has been done before – my wife says there are no more original thoughts (I’m scared to ask her whether her pronouncement was one since she’s always the exception to her rules). Rather than research the topic to prove her right yet again, and because different things work for different people, I decided to list a few of my own thoughts, such as they are, if only to remind myself of my own goals.
After mulling the categories, it seemed that there was a decent overall rule of thumb, which is not a bad place to start: do those things you would to help someone with any other long-term medical condition.
Don’t withdraw. No matter how casual your relationship, no one wants to think that their child’s condition has made people pull away. Some people don’t deal with illnesses and serious issues well, but you can be sensitive to how you go about things if that’s the case.
Make yourself available. Don’t be afraid to offer. You don’t need to be there all the time for someone in order to be helpful. It’s a comfort to hear someone say that you’re there for them whenever they need you, even if they never take you up on it. Let them decide when to ask. You can discuss when they do whether you’re comfortable with the request.
Don’t contact them every time you see an article or a news story. (There was a featured story in the New York Times just today). Chances are, they’re already reading everything they can about the subject and thinking, if only I researched more… And everyone else is pointing out the latest article. Read a few yourself and you might notice that most articles are general and don’t have anything new or specific to offer. (Probably not this one either for that matter).
Every child is different. Remember that just because someone else you know has a child who’s made great progress doesn’t mean it will translate or apply. Chances are, they’ve researched the therapy in question and considered it. Someone else’s success is great for them, but that’s a painful reminder.
Give them a break. Autism is a full time job for parents. Marriage, work and parenting are hard enough on most couples even without the challenge of trying to help a child to live with, if not overcome, autism. Whatever you can think of that will help ease the load is probably a good idea. Visit, call, send joke spam, send a random gift basket or something for no real reason. Some part of their day has to be their own.
Educate your own children. If you’re going to visit someone with autistic children, explain to your own children what to expect. Children with disabilities are often mainstreamed today, so your children are probably in a better position to understand this than when I was kid. Back then the “R” word was used casually, and I still have to be mindful to avoid it.
Don’t brag or complain. Parents of children with autism don’t expect everyone else to stop having their lives which are autism free. By the same token, they also don’t want to hear someone brag about their perfect children, the overcompetitive striving we often default to as we begin plotting almost from birth what college our child will attend. Complaining about how hard our own minor troubles are doesn’t seem to go over well either. Instead, show equal interest, perhaps let them lead the conversation to topics that are comfortable.
Pray for them. I wasn’t much for praying when I was younger but that’s changed over time. Thinking about things beyond myself helps keep the big and little things in perspective, and the details become less stressful. To me, praying is like the moon. It’s far away, but it affects the tides, the spin and even the shape of the earth. If you can, tell them they’re in your prayers. Even if you’re not religious, tell them they’re in your thoughts. How many of us watch TV and cheer on our team as if it has some invisible effect on the game? If you can believe in that, why not cheer on a friend. It’s helps to know someone is pulling for you, like your own fans, your very own moon.
Write a guest blog if you’re asked. A day off from blogging might be a nice present. This one’s for you, Kim. Enjoy. You’re all in my thoughts and prayers.
Gratitude Attitude
This week’s Gratitude Attitude goes to our fabulous friends for schlepping down the Garden State, on a Saturday in July, for our annual pool party. Great conversation, wonderful appetizers (yes Jeanne, again with the damn cheese), and the opportunity to reforge connections with people who’ve known you for decades- all priceless. I’m already plotting how to bribe the weather gods for next year. Thanks again everyone!
