January 26, 2012
This week’s Gratitude Attitude goes out to my mom, both for all her help with my kids, and for being brave enough to continue trying to teach me how to cook (we’ll get there!). Thanks for being such an important part of our household!
January 11, 2012
At first Justin brushes by my little brother, barely gives him a glance as he makes his way across the kitchen to the family room, intent on a destination known only to him. I’d hoped for more recognition on Justin’s part, although my sole sibling only makes it up for a visit about once or twice a year. Since I’ve been too afraid to try a plane ride with my eldest, they really don’t know each other very well. Still, they had forged a true connection this past summer, Justin standing at his uncle’s side, occasionally looking at him to share the joy of a particularly engaging scene on his DVD player. I’d thought he’d at least be happy to see him, would show some sign of pleasure at his presence in our home.
And just then, my oldest child stops, pivots, runs back to my brother, puts his hands on either side of his face, and looks at him with the most intense gaze I’ve ever seen.
I take a few steps toward them, careful not to disturb their time together. Justin smiles up at his newly discovered relative, then looks at me. Again, he looks at my brother, then regards my face. He jumps up and down with joy, emits his standard “eee” for excitement, then disengages from my brother’s embrace. The moment is over. But I know in my mother’s soul that I’ve just witnessed a connection made, a cognitive leap in my boy. He may not comprehend exactly who this tall man is to him. He has however recognized the similarities in our faces, the features we share that make our blood tie unmistakable. On some level, I am certain Justin gets that we “go together”.
And he also gets that this is one more person in his life who loves him.
I can’t prove any of this of course. If I directed him to his iPad he wouldn’t type out “this is mommy’s brother”, or show his comprehension in any other form. I know he understands this man is family just the same. And while I’m thrilled that he’s made this connection, it just makes me wonder how much else he knows that he’s unable to share. This awareness of the gap between what he understands and my ability to discern that understanding remains a sore spot for me, although I continue to hope that chasm will continue to close. He’s made such progress with his new technological device in school, and it’s finally begun to spill over a bit into our home. I’m hoping that his need to connect through the written word will increase over time. All we can do is give him opportunities, and wait.
I put those thoughts aside however, because at the moment we’re engaged in a rare opportunity in and of itself- my mother, my brother, my husband and my children all in the same space, willing and able to interact with one another. It’s about as rare an occasion as a solar eclipse, or my going an entire day without consuming chocolate. I need to get back into this moment, to recognize its incalculable worth, and just enjoy.
And as I watch my oldest son return to his uncle for a second round of hugs, I do just that.
October 21, 2011
This week’s Gratitude Attitude goes out to my Aunt Candee and Uncle Ken (yes, they’re getting a lot of “air time” these days), for a fabulous day on the farm. Zachary declared he would locate the “biggest pumpkin so the whole world could carve it” (which smacks of “Hands Across a Pumpkin” to me). Justin was so enthralled with the experience that upon our return, he insisted my husband remove both gourds from the trunk before he would even enter the house. Not only was there pumpkin picking and a hayride, but the day culminated in watching my youngest navigate a real tractor on his own, a flash-forward to his teen-age years. It appears we’ll be in a bit of trouble…
Thanks again to Candee and Ken, and to my mom and Kate for taking part in our wonderful day!
August 11, 2011
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.
July 13, 2011
This week’s Gratitude Attitude goes out to my mom, Aunt Jennifer, and Aunt Lorie, for taking care of my boys so their parents could make it down to DC for a dear friend’s nuptials. It was a wonderful wedding, and a special set of thanks goes out to the bride and groom and their families for such a great weekend. Thanks so much!
July 11, 2011
Always a bridesmaid, never a bride. Just kidding.
This past weekend I had the honor of being chosen to participate in the wedding of a dear friend from DC, a friendship neither diminished by our five years apart since my relocation to Jersey, nor the two hundred miles of interstate that now geographically separates us. I was thrilled to be asked, and since it’s pretty clear my life is complicated, this says a great deal about the woman requesting my presence. I began six months ago to pull off the seventy-two hours of coverage required to keep both kids alive and happy, and due to the generosity of friends and family, we accomplished our goal. All went well, and my boys were thrilled to revel in the constant attention usually paid to them when their parents are out of the house. Jeff and I were equally ecstatic about the opportunity to sleep past 5:00, as well as the opportunity to string two consecutive sentences together without interruption.
Clearly, the weekend was a win-win for all.
I admit, on Sunday, when the cobwebs cleared a little and we were headed once again toward the duties of parenthood, I felt this post clamoring violently for attention in my brain on the long ride home. I took some notes as Jeff thankfully drove, and I struggled to retain my thoughts long enough to set them irreparably in ink. I find my little vignettes sometimes have a theme to them, and I also find that frequently the one I conclude with is not the one I had in my head when I began. To be honest, that could be in part because by the time I’ve finished I’ve often forgotten what I had in mind when I started. More often however, it’s just that my writing frequently takes uncharted twists and turns, and is yet one more thing I seem to have very little control over.
Much like everything else in my life.
I could tell you this post is going to be about unions and families, and in part that would be true. Despite our closeness, the first time I met the future husband of my friend was at the church prior to the rehearsal. We had a moment of rushed introduction where it was clear we knew a great deal about one another, a meeting of the minds which resulted in all of my hopes for my friend’s future being completely validated. Witnessing the strength of the connection between these two individuals, coupled with the way they complement one another in every aspect of their existence, was bounty enough. Watching the way two families blended together until they appeared one seamless stream of relations was an even further unexpected, and welcome, blessing as well.
Trust me, the proof is in the reception footage.
I could share with you that this post is about teachers (shouldn’t every post be about teachers), for I was fortunate enough to reconnect with a group of professionals who once comprised what my co-worker aptly describes as the “dream team”. This compilation of educators was ever-changing, never static, but came together during what we think of as the “Camelot years”, which took place under the direction of two different but dynamic principals who in their own unique ways pushed us to their limits. For the most part we were young, as yet unencumbered by our own progeny, and simply fueled by a singular passion to create the greatest educational clime ever. At our facility there were operas created from scratch by ten-to-twelve-year-olds, productions eventually performed on the stage of a local university. We held a school-wide museum that covered every square space of the massive second floor designed to accommodate half of the twelve hundred students who went there, complete with live exhibits and docents. Creativity simply had no limits.
And yes, we’re talking public education here.
I could inform you this post is about acceptance, as I realized that eight years have indeed transpired since I gave birth on that benevolent and prophetic spring day so many years ago. While I was attempting to convince my children that the world was indeed a fun place to reside I’ve put my career on hold, and in the process been eclipsed by many of the professionals I worked with “back in the day”. I was seated with the young woman brave enough to take over my classroom for those last seven weeks of school while I took maternity leave, a lovely individual who is now an assistant principal helping to command an entire school and every classroom within it. The bride herself was my mentee many eons ago, and has recently conquered yet another step in the steep ladder of educational administration herself. Bossing around big people was once my dream too. For a variety of complicated reasons, in all honesty, I can say it is unreachable for me now.
And finally, I can also say I’m at completely at peace with this truth.
Obviously, today’s post is about all of these things, but in the end, it will really be about friendship, about a hard-won and enduring bond. It’s about finding those people in your life who will remain with you no matter how infrequently you call or visit, or how tired you seem when contact is finally made. It’s about a woman without her own children, who nevertheless comprehends the complications and disconnects of this often chaotic life as much as it’s possible to do so. It’s about a foundation built so solidly on shared experience that new friends, careers, and even husbands will never take it down.
Finally, it’s about her generosity of spirit and a limitless compassion I’ve come to depend upon over the years, and know without reservation will thrive with resilience in the years to come.
I’ll close this now with the tag line from my mother’s wedding toast (I’m sure she won’t mind I’ve stolen from my own words), as well as heartfelt wishes for a wonderful honeymoon to be spent in the redolent beauty of Hawaii (good luck in that shark cage).
Karen and Mark, may you live long, love well, and laugh often.
I am completely confident you will.
June 28, 2011
This week’s Gratitude Attitude goes out to my husband’s family for helping out this past weekend. We really wanted to celebrate Uncle Steven’s 50th birthday (yes Steven, you’re 50!), and with their combined efforts, we were able to do so. The boys and their parents had a great time at the party. Happy Birthday Steven!
January 23, 2011
“Come on Justin, run!” Zachary yells to his lagging older brother, the one captivated by the swirling cadence of the electronic flashes darting across the screen of his favorite video machine. Justin and I rush to catch up with my youngest, his father, and our BCBA as they purchase one game of bowling and rent the requisite soft shoes for the outing, and we make it in time for Justin to grab his pair for himself. We are assigned a lane at one end of the alley, fortunately far away from the other early morning families and couples immersed in the cacophony of brightly colored orbs crashing into their intended targets. Justin seems exuberant, which is somewhat of a necessary prerequisite for this outing to be successful, has been grinning ear to ear since we pulled into the parking lot. So far, the outlook for the first collective McCafferty clan activity in an eternity, looks favorable.
In many respects over the last few years we’ve had separate families, me generally ushering Justin out of the house on weekends, his father staying behind to care for Zach. In part this has been due to Zach’s nap schedule, which I’ve followed religiously because he is the first of my offspring to actually take one without screaming about the concept for an entire hour prior. The second reason is that on weekend afternoons Justin is often pulling me toward the front door with his shoes in hand well before I’ve even dispensed with the lunch dishes. Since this event always coincided with Zach’s naptime, the situation hasn’t boded well for all of us to exit the house together. Couple that with the fact that my eldest wants to ditch every place we go in the same amount of time it takes me to get a manicure, and you can see why our trips have been so infrequent.
Today, I’m hoping that will change.
For me, this is the culmination of the real reason I’ve been taking Justin here every week to meet the divine Miss M. Sure, I like getting him out of the house on a weekday once in a while, and I’d prefer him to find a pastime other than video games and animation to engage his mind. I’m also excited he seems to like the bowling as much as the horseback riding because it’s something he can do when he’s old, when I’m no longer around to schlep him places. Hell, if required, his caregivers could even wheel him up to the lane and help him roll his ball off his lap if they had to. In theory, he could play this game for life.
I know. I’m supposed to be trying to live in the moment. Someday, I’ll get there.
All of the aforementioned reasons are valid, but the one that is really crucial to me, that keeps me up at night with all the other worries swirling around my overtired brain, is this: as a family, we can’t continue to live every aspect of our lives on separate trajectories. At the moment, restaurants are out due to Zach’s GF/CF diet. A beach excursion lasts seventeen minutes before Justin is trudging up the sand to his fancy stroller, looking back over his shoulder to see if any of his family members is bright enough to realize he’s ready for his fudge fix. You already know what happens at the movies. Frankly, to my continual dismay, there just aren’t that many activities Justin enjoys. This, coupled with the four-year-age difference, has made getting all of us out into the community together about as simple as a task as convincing me not to open the second box of Girl Scout cookies in our freezer within a twenty-four hour time period.
Hell, I made it all the way through to cadets. I figure it will be my God-given right to eat them all.
Finally, the five of us make it to our assigned lane without either losing a child or a diaper bag, and Miss M carefully types Justin and Zachary’s names into the waiting blank screen. We’ve convinced my youngest to let his older brother go first, because his previous attempt at turn-taking here was not met with a great deal of enthusiasm, and I still want Justin to enjoy bowling even if Zach will conclude each frame for him. Thankfully, I have remembered to place the timer we’ve used before within easy reach in Justin’s large personal bag. Miss M has whipped out a lanyard with white beads, an item which looks like something I made at camp in 1977, but in reality is a device to help Justin understand how many frames he must bowl until the game is concluded. We’ve already used our “photo array”, which consists of a sentence strip with a variety of snapshots attached by Velcro, which in prior sessions has helped Justin understand the sequence of events in our afternoons. We are, as those devilish Girl Scouts say, prepared.
I am already tired.
We procure the lightest equipment we can find for the boys, and Justin, old pro that he is, heads without any prompting at all to his familiar yellow friend, holds it securely in his arms, and releases it down the silver ramp to its intended destiny. Zach cheers his brother on, and I watch in wonder as Justin sidles up to his father, grabs his hand, looks up into his face, then looks back at his ball hurtling down the slick lane. Without words, with only a simple gesture and glance, he just as clearly said, “Daddy, look what I can do”.
Even if we weren’t having fun, my son demonstrated joint attention with one of his parents. The trip was worth it for that moment alone.
The rest of the game proceeds without issues, Zach lustily crying “Yippee!” even if the bowling balls touch nothing but air, Justin joyously jumping up and down with each release. The boys were happy to be there. Miss M was thrilled with Justin’s compliance and eager enthusiasm not only for each of his turns, but for his brother’s as well. Jeff and I were happy to be anywhere but home.
We were having fun. Just like any other family.
I know, it sounds like the simplest of mornings, an adventure at a bowling alley, two boys playing a game together, and rooting each other on in their own respective ways. But this is just one more tiny example of the scales of happiness finally weighing in our favor, one more item on those round disks pushing us over the edge to contentment. Justin’s crush. Zachary’s role play. My eldest gently touching his brother’s face in the bathtub as his younger sibling tries to tickle him. Justin possessing both the motivation, and the ability to execute, sharing joy with his father.
Simple little things, yes. And to our family, miracles all the same.
August 20, 2010
We had family stay with us this past weekend, my husband’s sister and her husband, and their lovely daughter making her transition to womanhood. After eighteen years with my husband, first as boyfriend, then fiancé, then spouse, I feel confident claiming these relatives, and Jeff’s brother’s family, as my own family now. What’s even more fun is that I actually like all of them.
This recent trip was particularly special because it was the first time they had stayed here since Zachary commenced his path to relinquishing the quiet fog he seemed to reside under, his opaque shroud which was eventually replaced with a desire both to communicate and to interact with those around him. A year ago he wasn’t really interested in having guests, although he perked up a bit when they came, and eventually succumbed to the experience. This summer however, his cousin is all he can talk about the week prior to their visit, with special mention of his uncle, who is a veritable kid magnet. This is the individual who first convinced Zach he could indeed survive being submerged under water, and that conviction has stuck with him ever since. I remain eternally grateful.
There is always a little tug at my heart when we have company now, for while I’m ecstatic that Zach is so interactive with basically anyone who crosses his path, I still yearn for the same for Justin. He has made progress over the years, and definitely acknowledges the intrusion into his world with the briefest of smiles, a glimmer of recognition, and if that person is fortunate, a hug or the touch of his hand on an outstretched cheek. He is particularly enamored of his three cousins, all considerably older than him, but all until recently still residing within the parameters of childhood. I know in my heart he comprehends in some way that these people belong to him, that they love him, that he is theirs. It is a great solace to me that a few times a year Justin’s world expands beyond the confines of his father, mother, and little brother.
This visit, I even get a bonus gift. Most of the time the kids’ different schedules preclude us all being together other than meals, plus we generally have to contend with Justin’s all-consuming desire to remain in the house. This past weekend I was awarded a prize- an entire hour in which my immediate family and my family by marriage frolicked together in our pool, with not only Zachary thrilled with the attention, but Justin somewhat engaged with everyone, and at the very least consenting to immerse himself in the calm waters of our backyard haven. He lasted outside twice as long as he usually does, enough time for me to play a bit with him, to watch Zachary douse his uncle at least thirty times, and to consume an entire wine cooler while it was still cold. For me, this constitutes a stellar day.
And I will say this- if I could release this family from the bonds of autism, erase the suffering I’ve witnessed my two children experience, I would sell my soul, make my bargains with the devil, do whatever it took to eradicate this disorder from our lives, because it has caused my sons pain. It has caused my husband pain. And there is no doubt, on a variety of levels, I have suffered as well.
But I also know in my heart I would never appreciate this hour as I now do, would not even have it register on my list of things to be thankful for, would probably instead spend the entire time attempting to remember where all the necessary staples reside in my kitchen for the meal I’d eventually be preparing that night. Although this gratitude does not in any way mitigate the circumstances that spawned it, I recognize I am finally in a place where I can excavate something positive from this experience, this journey that has scarred my heart and soul.
And for that, in this moment, I am grateful.
August 6, 2010
The McCafferty clan spent the entire day in public this weekend, no crying, no tantrums (except for when Daddy was told he couldn’t bring his Swiss army knife past security), and no agita. Just five consecutive hours of blissful, calm togetherness.
The Christmas miracle came early this year.
Truth be told, we began having successful family outings about six months ago, when a combination of therapeutic interventions, maturity, and the correct medication culminated in my oldest son’s ability to consistently behave in public. We’ve been going places for years he and I, but our field trips have been limited in scope and time, and generally have excluded his father and brother due to Justin’s penchant for leaving any destination within half an hour. We’ve been working on extending our stays, but now that Zachary’s older it didn’t seem fair to risk cutting his trips short, and depleting two gas tanks seemed an extreme alternative, so we’ve kept our boys’ trips separate for the most part. This Sunday however we got brave, and armed with season passes for Great Adventure that “by God as a family we are going to use”, we decided to give it a go.
For once the stars aligned, and literally everything went smoothly. Everything.
Of course, by this point in the autism wars I am conditioned to expect the worst in just about any situation, so I was mentally prepared for meltdown Armageddon. My heart rate elevated within seconds of entering the gates after I was told the office for activating our season passes was on the opposite end of the park, a route that would take us past almost every ride Justin deems appropriate. Jeff and I briefly debated our options, which included either waiting until later in the day and risking the long lines we’d been warned about, or instead popping a wheelie with Justin’s stroller and whisking him past his coveted rides so we could get the photo portion of our day concluded swiftly. We opted for the latter, and I bent down and whispered in Justin’s ear that he would indeed get to partake in his usual fun eventually, but we had to accomplish this errand first. He regarded me with what I interpreted as minor disdain, but settled back in his souped-up carriage, and calmly let us wheel him past his faves with nary a complaint. We didn’t even have to bribe him.
The four of us waited mere minutes to have our likenesses captured on tiny plastic cards, and Justin dutifully complied with disembarking from his seat and returning post photo shoot, even gracing the camera with the slightest of smiles. Our passes were quickly returned to us, with half of us looking annoyed, and the youngest, palest member of the McCafferty household barely registering his image on his entrance ticket. We swiftly gathered our things, made a brief potty stop, then worked our way back through the park, stopping at every ride that caught our fancy.
The four of us, together, went on every attraction that caters to the four feet and under crowd.
We were an ensemble crew on the teacups. We raced each other on the carousel. We were even able to get Justin to participate in every ride in the Wiggles World pavilion, an area of the park which he has made perfectly clear in the past year he has seriously outgrown. For whatever reasons, ones I’m certain I will never discern, this weekend the Wiggles were once again cool. Through Justin’s acceptance his entire family had the opportunity to plunge to the ocean floor on the yellow submarine, ascend to the heavens in the Wiggles balloons, and condone mommy’s lead foot on the Big Red Cars speedway. The lines were short (and so were the rides), but we went on every one the boys pointed to, some of them twice.
Before I knew it, we’d been there for five consecutive hours, and I’d relaxed for at least four of them. We’d enjoyed ourselves. We’d had an entire day of fun.
We were just like every other family.
Well, okay, not REALLY, but for a few hours, minus the fact my oldest son doesn’t speak, we were. I realized it was the first time we’d been together as a cohesive whole in the three years since my youngest was born where there wasn’t an incident, a struggle, or even just the marital sniping all couples indulge in on family outings. I’d even remembered the camera, so if I didn’t believe it later, I could prove to myself this day had occurred after all.
We eventually made the long trek back from roller coaster mecca to the waiting vehicle I only located by activating our car alarm, and before I employed that lead foot once again I decided to scroll through the wonders of modern technology and reenact our day. I was rewarded with a shot of Justin, eyes wide as he whirled around on the teacups, with Zach grasping his brother’s hand for dear life. There was an image of the boys, side by side, happily scarfing down the contraband carbs we’d snuck into the park to accommodate Zachary’s GF/CF diet. My photo gallery even included a family portrait, slightly askew, of two grinning parents and their progeny staring off in the distance from the top of the ferris wheel, blithely ignoring entreaties to smile and look into the lens. It wasn’t a perfect day. It might never be most peoples’ definition of perfect, ever.
But it worked for us. And that’s all that matters.