January 30, 2011
Someday, I’d like my life back.
I’m not referring to the one I had pre-child, which was a fairly self-absorbed mixture of work, museums, bars, and fighting with my husband over his permanent moratorium on ethnic food. I’m not even alluding to the one I had post-Justin, pre-diagnosis, where I often comforted myself with my grandma’s favorite saying, “this too shall pass”, when most likely whatever was distressing my son for the better part of his days, probably never would. No, I think in the few minutes every morning, before I bribe myself out of bed with the promise of chilled chocolate propelling my tired body forward, those minutes in which I allow my mind to wander both past and present, that what I’d really like to return to is the luxury of one, simple, prior reality.
One day, I’d like to have choices again.
I recently read a wonderful post by Susan Senator, in which she discusses her journey in trying to secure housing for her almost twenty-two-year-old son. As I read it I remember thinking how brave it was for her to put her desires “out there”, to share her need to live a connected yet separate life from her oldest child. When I say brave I mean it, because talking about where your profoundly or moderately autistic child is going to live upon majority is fairly verboten among my people unless you really know those with whom you’re discussing the topic. Long-term care and the vaccine-autism issue is for some of us the equivalent of asking the mainstream world about their politics, religion, or feelings about abortion. Unless you’re particularly close to someone, it’s not often dinner conversation. Topics are undertaken at your own risk.
I realized recently how secretive some of us are about our long-term wishes when the subject casually came up in a dialogue I was having during a playdate, one in which I consider both my son and myself to be the beneficiary of a friendship made, connection forged. Over hot tea I was sharing that Justin seemed to be loving his horseback riding lessons, was exuberant when we made the turn-off every Saturday from the fairly narrow country road to the main thoroughfare that would lead us to the barn. I made mention of how I hoped he’d eventually acquire the skills that would lead to equine care, the grooming, feeding and cleaning of tack that might eventually engender some type of employment for him one day. I closed with my wish that he’d eventually reside either on or near that magical, ethereal farm in my mind, and that my husband and I would live somewhere nearby. I watched her pause, stare at me, and whisper, “You want him to live somewhere else someday too?”, and I realized anew how loaded this subject has become at times within our community.
I also realized, once the words escaped my mouth, how much I do one day wish for him, and for me, an enmeshed, yet divergent, existence.
I love my son. If nothing else is clear from my weekly missives, I’m confident this emotion comes through. I’ve referred to this issue of separation before, mostly during difficult times, when our decades together seemed to stretch out before us in an almost endless dance of distress, days where making it to lunch without a major crisis unfolding seemed an extravagant dream. Through much hard work, relentless repetition of behavioral concepts, and mostly Justin’s innate desire to be happy, we’re finally in a good place now, and yet I find myself compelled to reiterate my previous assertion. Despite the positive changes, I still hope we can procure a safe environment in which Justin will be able to call home one day. I call that desire my own personal mantra.
I know some wonderful families who intend to keep their children with them as long as humanly possible, some with neurotypical siblings who have offered to take up the mantle of caregiver once their parents pass on. I think these parents, and particularly their non-affected offspring, are amazing people. Frankly, I’m humbled by their choice, and I mean this in a completely sincere, non-snarky way. It is the siblings in particular who move me, those who completely understand the restrictions caring for an autistic adult will place on their own lives, yet are willing to undertake the burden and blessing nonetheless. The ones I’ve met who plan on taking this path aren’t martyrs, or passive victims of circumstance. They want to do this. They are, frankly, incredible individuals.
And I, frankly, am not.
Will I rise to the occasion if necessary? Of course. Will I be happy about it? Not on your life. And I will do it because I love my child, and he’s my responsibility, although to be perfectly honest I only undertook the position of parenthood due to the probability the “hard lifting aspect” would be over for Jeff and me after twenty some-odd years. The possibility of long-term care did flit in and out of my brain as I read those pregnancy and baby books, and just as quickly as I concluded absorbing the most depressing case scenarios, they flew out of my head again. Jeff and I were fairly upstanding citizens. We paid our taxes. We made donations to charity. Despite my penchant for writing about wine our liquor consumption was casual and appropriate. Hell, I was even nice to highly irritating children I didn’t even know. I had every hope our clean living would translate into healthy progeny, both in body and in mind.
And ultimately, it did, just with a twist worthy of any conclusion to a current reality show.
Although I don’t believe in the concept of fair, am more a proponent of a more simple aphorism, “shit happens”, I am hopeful the universe will lob another twist my way eventually. I’d like to envision an ending to this story that involves us circumventing the present twenty year waiting list for group home placement in our state, the one where the waiting part only commences when said child hits drinking age. I choose to imagine a nearby residence where my son has known the individuals he’s lived with for years, because his mother has been able to cultivate friendships for almost two decades with like-minded, kind, responsible parents. I’m eager to think that we’ll all look out for each other’s children, create our own type of family, as we share the responsibility of assisting caregivers in keeping our offspring alive, productive, and hopefully, happy.
I long for this for Justin, because he’s initiated outside interactions with others since pre-school, and will most certainly be bored with me by the time he’ll be legally able to vote. I seek this scenario out for him because I know at the very least he will be enthused about living with other adults who will engage with him, that he will actually enjoy what I am certain will resemble a revolving door of caregivers. He is a child, and will one day be an adult, who enjoys variety.
And then, there’s me.
Someday, I’d enjoy the opportunity to return to Europe, or visit my friends in DC on a whim, or just spend the day running around NY with no agenda, no well-executed plans. I’d appreciate the luxury of making a dental appointment without having to secure child-care for my twenty-something offspring. I’d like the chance to have a real sick day spent mired in the folds of my sheets and comforter, watching the Godfather trilogy, or old Everybody Loves Raymond episodes, or whatever reality show I’m pretending I don’t have Jeff record on our DVR. Hell, I’d just be happy to wake up once in a while and have no idea what to do with my day.
And for anyone out there seeking the same eventuality for their own family, here’s a heartfelt wish for all of us longing for the luxury of an empty nest.
January 28, 2011
The phone rings, and I run to it, dripping wet from the shower I snuck upstairs to take. I know without even looking at the caller ID who will be on the other end of the line, and so I dramatically begin my mental preparations to stave off my impending despair. I press “talk”, and sadly I am validated, as it is indeed our Sunday morning therapist calling to cancel. She has an extremely valid excuse, and of course, being the magnanimous person that I am, I’ve already forgiven her before we’ve even severed our connection. I am conscious however that this change of plans will slightly derail our day, and that Justin will regret not having his weekly session with her, may actually “protest” her defection. I’ve been filling in occasionally for his other therapist who’s currently on maternity leave, and since he’s missed so much school lately due to the fact we seem to have acquired New England’s weather system, I know I should run a session with him today so he doesn’t lose mastered skills. I sigh, thinking of the glorious hour I would have had while Zach played with his father and I wrote inane witticisms on Facebook, then dry and dress myself and walk downstairs.
All is fairly calm in the kingdom at the moment, and as Jeff guesses who our mystery caller was I tell him I’ll tutor Justin myself, and that he should maneuver Zach upstairs. I know that Justin will be fine with his substitute teacher, although he prefers the novelty of a fresh face, and I’m confident we can get through at least the majority of his most crucial goals without a meltdown. I move through the kitchen to get the boys’ snacks ready, and as I do so I casually mention to Zach that he will be going upstairs to play with Daddy so Mommy can teach Justin. He screams, plants his feet firmly in what I like to call his “no way” stance, and says “No! I want to go to school too, and I want Daddy to teach me!” Jeff and I both burst out laughing, and I know we are recalling the last time Jeff tried to instruct one of our children (it ended with Justin strapped into his chair “watching football”, my husband insisting upon my return home that it was an educational opportunity, since he was teaching him colors, letters and numbers from our big screen). Patience, and instructing small children, are not my husband’s forte.
Once we can both breathe again I look at my spouse and say, “Sure, why not, at least it will be entertaining”, and I turn to Zach and tell him he can go to mommy’s school with Justin as long as he’s a good boy. Tears immediately arrest on his face, and he runs over to the art/therapy table and promptly takes Justin’s seat. I know this won’t fly with my eldest, so I cajole Zach over to the empty chair next to him, and deposit the snacks on the floor. I call Justin over to join us, and he quickly runs to the table once he sees his favorite popcorn lying in wait for him, then stops dead in his tracks as he registers Zachary’s presence. He’s usually pretty great where his little brother is concerned (unless they’re fighting over the attentions of our attractive teen-aged babysitter), and fortunately this time he remains true to form. I see the flash of white teeth as his grin spreads across his face, and he slides into his seat happily, grabbing my shoulders and pulling me toward him to bestow a big kiss on my forehead.
Yes, my child is thanking me for making him learn something. This is why I (sometimes) forego reality tv shows for plotting how to make his life better. He’s just that sweet.
I ready my materials as Jeff comes around the corner and slides his 6’4” frame awkwardly into the remaining plastic chair, and decide to handle spelling first, as this is something Zach can participate in as well. I fan the letters out in an asymmetrical array before us, and just for kicks, as this noun is well beneath my son’s word repertoire, I ask him to spell “cat”. Zach pipes up “I’ll do it!”, and promptly adheres the letters “z”, “b”, “d”, and “t” to the waiting Velcro strip lying bare before us. Jeff raises his eyebrows at me (I’m thinking it’s time to put a little extra effort into phonics with the younger one), and I tell him “good try”, making tiger mothers everywhere shudder with contempt. My eldest indicates his mastery over such simplicity rapidly and with an air of boredom, and I know I’ve got to ramp things up a bit or I’ll lose my students’ attention. We attempt “boat” next in my thinly veiled attempt to go to a more fun place, and Justin quickly nails it. I barely have time to return the embrace he seeks for reward along with his coveted kernels when Zach turns toward me, sticks his feet up on the table and says, “Are we done yet?”
Guess this is why I never won “teacher of the year”.
Now that I’ve bored him to death (after all, he has legos waiting for him upstairs, spelling is so “yesterday”), Jeff walks him upstairs, and Justin and I are able to resume our interrupted lesson. I hear the slamming of doors and screams of glee as my husband chases Zach around our second floor, and I am grateful once again that the sensory diversion of sound no longer upsets my eldest. We weave our way through the lesson, bickering occasionally over how many pieces of popcorn are commensurate with a correct response, but all in all, our session is smooth sailing. Justin is learning. Zachary is happy.
The boys are alright.
January 26, 2011
“Put the dragon song on again Mom!” Zach yells as he rounds the corner and barrels into me, face flushed from the exertion of chasing his middle-aged mother around the house. I grab him around the waist and haul him upside down (an act I have the sneaking suspicion I will have to forego in the coming year or risk the need for physical therapy), briefly tickle him, and release him laughing to our welcoming couch. I know he’s referring to “Puff the Magic Dragon”, because we’ve heard it at least a thousand times recently, once we both discovered the book I’d bought a year ago had an accompanying CD “hidden” on the last page. I’m glad we have the written word as companion to the songs, as this experience would be totally depressing without that last illustration of Puff making a new friend. Over the last few days I’ve wondered if years ago I’d had the book along with the record, or if I had completely glossed over little Jackie Paper’s defection with the cruel indifference of childhood. Without this last page, I would now find this story’s conclusion as devastating as the one from Toy Story Three.
We all know how well I fared with THAT ending.
I’ve discovered once again how to use our ridiculously intricate stereo system (in my defense there are multiple components, as clearly one should only ever listen to Loverboy on vinyl), and I quickly slip in the CD and crank the volume as loudly as possible without alarming the neighbors. Zach turns to me, shoves Buzz, Woody, and “Baby Jessie” into my arms, and commands me to dance with them, as he grabs the fake baby he’s adopted and twirls around the room after me. This remains entertaining for approximately forty-seven seconds, after which he drops his faux infant on the floor and orders me to turn off the music, remembering, through his bossiness, to say “please”. I comply, turn to him, and say “what are we doing now, sweetie?”, and he looks up at me as he steps on his abandoned child’s face and says “tell me the story of Goodnight Coconut Pirate, Mom”.
Sure hon. It’s on the tip of my tongue.
I scramble around in my brain for the creativity I used to possess, that font of originality that seems to have disappeared along with my ability to remember where I put my keys, or how many carbs I’ve consumed in one day. He’s on a big pirate kick lately, and I’m certain the recent literary references to those swashbuckling buccaneers has triggered this need for a tale about them, but I’m not quite certain where the coconut part comes in. As it turns out, my husband is deathly allergic to them. Perhaps Zach is conjuring this up from the conversation his father and I had recently, the one where my spouse politely inquired if I was trying to kill him after he saw my often-ignored recipe book open to the page for coconut shrimp. Jeff and I are still adjusting to the fact we have to watch what we say around this particular child, as this one can actually repeat our conversations, apparently verbatim.
Yet another example of our fine parenting skills.
I scooch down onto the carpet with my back against the couch, gather the Toy Story posse around me, and throw a blanket around us to buy me some time. I figure if my rendition of GCP includes a sword fight, a tough lady pirate (no damsels in distress in this house), and an ending which includes grandma brownies and juice for the marauding invaders, we’ll be fine. I’ll just have to jazz it up a bit with some of my “special voices”, and make sure to keep the action going. Hey, he’s three. Stories don’t require the layered plotlines of a Lost episode (I know, another reference, but I’m still in mourning, bear with me).
I begin with my best “crazy pirate voice” (Disney will be knocking at my door any day now), and commence a captivating tale about a pirate who in a stunning coincidence has the same name as my youngest son, when Zach shoots up from his “snuggle position” and interrupts me. “Mom, and then the pirate Zachary rescues Justin from the bad pirates, and Goodnight Coconut pirate and his friends go home. The end!” I smile at his enthusiasm, ready to jump in with a new episode, but my son beats me to it. For the next five minutes he regales me with several different variations on a theme, all with the central character of our hero, “CP”, victorious in the end, with every adaptation including a variety of settings, dialogue, and characters. Granted, Coconut Pirate ends up in time out quite frequently, and the vast majority of his conversations end with one or another of the participants apologizing, but for the most part Zach does not infuse his life experiences within the chapters. They are completely original creations, totally unscripted from other stories.
He is using his imagination.
Over the past year-and-a-half the return of his language skills has been a source of constant wonderment to us (I’ve often said he should wear a sign on his chest stating “results not typical”), and his play skills have also kept up with his language acquisition. For the most part however, the skits he puts on with his toys, the scenarios he enacts with his creatures and figurines, have been extracted wholly from scenes he’s watched or had read to him dozens of times, his favored segments from Thomas the Train, Cars, or the Toy Story trilogy. I’ve been through them so many times I know exactly what to do and say now, would not dare to deviate from the appointed script, know I’ll be chastised if I do. “No Mommy, he doesn’t SAY THAT!” is a frequent refrain here, as I’ve tried desperately to infuse a bit of life into the same old story just to save my sanity. Zach hasn’t wanted me to orchestrate anything new, has actually been upset when I’ve tried. There have been no points for creativity in this house.
Eventually he tires of this new activity and wants me to read to him from “real books” again, and accompanies this request with a demand for juice and pretzels. I happily rise to placate him, mind spinning as I question whether that ancient tape recorder of mine still works, wondering if I can get him to repeat the last ten minutes another day so we can write these stories down, give them a permanent life of their own.
Hell, he’ll probably be published before I am.
I return with snack and liquids in tow, and as we sink into one another, close to our pile of beloved books, I tell him how proud I am of him. I tell him that we should write these stories down, that he’s an author now, just like the people whose names are written on the covers of his favorite tales. I remind him that just like books allow us to travel in our minds, a fact for which I am eternally grateful now that I’m generally restricted to the four walls of our house, writing enables us to make voyages as well, to set foot in places we’ve never seen, enjoy experiences we thought we’d never have. He smiles up at me, used to my ramblings, opens up The Grouchy Ladybug and says with a slight air of impatience “Just read Mom”. Spell broken, but the moment remains. My child has spun me a brand new story.
My son used his imagination today.
January 25, 2011
This week’s Gratitude Attitude goes to all the teachers, parents, and administrators who have returned my emails and calls regarding participating in the April 2nd POAC walk in Lakewood, at Blue Claws Stadium. I am thrilled both to have new walkers join our ranks, and to welcome back previous walkers as well. Thank you for responding, and looking forward to meeting many of you in April!
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.
January 19, 2011
Sure, there were moments of despair after Lost went off the air (they were dead most of the season, HOW COULD I NOT HAVE KNOWN???). I still haven’t gotten over Shakespeare in Love stealing the Academy Award from Saving Private Ryan (the Weinsteins’ campaign ROBBED you Steven Spielberg, for shame, FOR SHAME!!!). I’ll never understand why Kris Allen beat the fabulous Adam Lambert for the American Idol title in season eight, but I’ve been able to reconcile myself to that finale with the knowledge that coming in second has probably been beneficial to his career. Despite the tragic nature of these outcomes, I’ve tried my best to put all these losses behind me, and move on with my life.
After all, I have children. I owe it to them.
I admit, I had to remind myself just how strong I’ve been over the years, particularly following the “Justin after-care debacle”. I’d spent roughly half my free time putting this opportunity together for him for the better part of the fall, and I’d had a great deal of hope that some kind of peer relationship would eventually result from it for my eldest son. When it became apparent after the first day this activity wasn’t going to work for Justin (the half hour of sobbing prior to my arrival to pick him up was a dead giveaway), I will share that I was fairly upset for a few days. Frankly, there aren’t a whole lot of options for friendship for moderately autistic youth (google it, I dare you), and I had invested myself emotionally in the potential for a positive outcome.
Finally, later in the week, after a few long hours sulking on my couch, I eventually came up with a plan. It wouldn’t involve interaction with neurotypical peers, but it would place him around other children, and the central tenet of the event revolved around something Justin had come to enjoy. Plus, it would get me out of the house, where I might actually engage in conversations with people outside of the realm of cyberspace. I know. I have wild, extravagant dreams.
It was clear to me what the solution would be. Justin would be joining our local special needs bowling league.
I should preface this statement with letting you know that unlike the after-care program, I had absolutely no expectations going into this Saturday morning activity. This particular league is open to children and adults with a wide range of disabilities, some of whom I’d witnessed at other events, many of whom appeared much more evolved at taking turns and waiting patiently than my son. He’s made vast improvements in this area over the years (mostly due to having to share with his younger brother, not to any brilliant interventions on my part), but he still has a long way to go. I knew this was a popular activity amongst the disabled crowd, but since there were a lot of lanes at this particular venue I was hopeful he’d only have to share his with one other child at best. I figured we could at least pull one entire game off after all the wonderful experiences we’d had with the fabulous Miss M.
We arrived just in time, and I almost had to body block Justin to get him to stay still long enough for me to collect his felt foot apparel. It was obvious where we needed to go, as I looked down the length of the alley and saw a few dozen children and parents congregating around what looked like only two lanes. I swooped up Justin’s shoes and we received our lane assignment, and I subsequently realized how much I require lasix surgery as it became clear the league had commanded a half-dozen of them. We trudged over, boy and goody bag securely in my hands, and I was fortunately able to find him an empty swivel chair. I introduced us to the nearest parent, and glanced up at the electronic board regaling us with its list of participants.
On this lane alone, there were six. I was relieved I’d remembered to bring Tylenol.
To Justin’s credit, he did as well as humanly possible. I plied him with snacks and favored DVDs as he waited his turn fairly patiently, only slipping his shoes off once during the course of the game. I even managed to converse for three minutes with a lovely woman whose sons were so mildly autistic their form of the disorder bore absolutely no resemblance whatsoever to the subtype my son possesses (and they were FABULOUS at waiting). We made it through the majority of the game, but I could sense my son’s angst building, and I’ve resolved never to leave an activity on a bad note, thus reinforcing the connection between whining and exiting.
Just call it my life’s work.
We packed up to leave, and I had to fend off the protests of the kind woman I’d met who was dismayed when I told her we wouldn’t be returning, as she pointed out that Justin had really done well. He had, and I thanked her for the compliment, but that wasn’t the point. The truth was, he hadn’t had a good time, and as much as I enjoy meeting new people, this wasn’t (sadly) supposed to be about me. It turns out that bowling is one of three activities outside of movies and computer games that seem to entertain my child, and it simply has to remain fun for him. Despite the opportunity to talk to someone other than my husband, and perhaps score some sour cream and onion potato chips from the vending machine, this is not the correct venue for him to participate in this activity.
We exited the alley, Justin thrilled to be on the move, and me saying goodbye to a number of wonderful people in our community I’ve had the good fortune to come to know. He was bouncing up and down for joy, and for once my mind was clear, already on to the next event, which would be how to keep the moderately autistic child happily occupied until we left for his horseback riding lesson in the afternoon. I realized I wasn’t the slightest bit depressed about our “failure”, and that I’d already come up with a slight adaptation on this theme. We’d be coming back here as a family, claiming one entire lane as our own uncharted territory, with my boys taking turns and hopefully, in their own ways, cheering each other on to victory. I slipped Justin into his harness, settled myself into my frigid front seat, and smiled as I turned the ignition key, because once again I had a plan.
And although Jerry Seinfeld says “there’s no such thing as family fun”, we’re going to give it a try.
January 18, 2011
It’s Martin Luther King Day, day seven of what I’m considering to be “Holiday Vacation Part Two” (two half days, one snow day, a three-day weekend and a RAIN delay, are these kids EVER in school?), and once again Justin and I have opted to spend an hour at our local arcade. We have run out of things to do, as there are only so many times one can go to the mall, go bowling, or watch a half hour of the latest Disney movie. I like coming here because this is one place where Justin actually takes his time, carefully considering specific machines in which to put his quarters in, making the excursion last long enough that it seems worth it. At least this outing is relatively cheap, and will culminate with chocolate marshmallow fudge, a treat Justin’s mama probably enjoys more than he does.
I can tell he’s nearing the end of his stash, because I can hear his treasured silver obelisks clanking together plaintively at the bottom of his plastic bucket. He becomes more reckless as he runs out of loot, sometimes sliding a quarter into a slot and running off before I can even rescue his tickets. I keep a tight rein on him, particularly in places like this, where the background noise would overwhelm my calling him (assuming he’d listen), and the allure of spinning objects and flashing lights makes him more prone to darting away. I watch as he does his own version of a drive-by on a game I never really liked anyway, then track him as he darts off around the corner to play poker (yes, it’s fake, I haven’t smuggled him into Atlantic City, I’m not THAT desperate for something to do).
I round the bend just in time to see Justin staring at a large man in confusion, coin still in hand, clearly preventing this individual from choosing “stand” or “deal” as he blocks his access to what appears to be a royal flush. The gentleman in question is obviously distressed by my son’s attempt to usurp his machine, leans into him and yells “YOU MADE A MISTAKE YOUNG MAN! YOU WERE WRONG!”, and in the moment after my heart unclenches I am able to assess the situation, and realize Justin’s not in any imminent danger. The man’s elderly father rises quickly from his seat at his own game of chance and says “It’s okay, he has autism, it’s okay” with a mildly desperate air, and I gently pull Justin back a bit as the autistic man in question repeats his mantra, loudly, several times. I smile back at the father and say “it’s fine, my son is autistic too”, and I see the relief wash over his face at my declaration. There will be no rantings about rudeness or scaring little children. It is quite clear that I “get it”. Once again, as I seem to do so often, I have run into one of Justin’s peeps.
We conduct the five-second-information-exchange as I prepare to move on, Justin both anxious to dispense with the rest of his quarters, and seemingly eager to put some distance between him and the man still yelling at him with, in his mind I’m certain, a justified and righteous indignation. Justin pulls my arm so hard I know Pilates is out of the question for a few days, and we reluctantly say goodbye to one another, connection aborted. I’ve run into a number of autistic kids, adults, and their families here, particularly in summer when the rides and boardwalk games are open in full force. For the most part I’ve bonded with the parents with a moment of eye contact and a nod (since we’re usually clutching our children with at least one hand this constitutes our version of a handshake), and since there’s no time to swap stories, we move on. It seems to happen more often than it should, considering technically autism is only in evidence in about 1% of the population (my husband is convinced I am some kind of magnet for it). It’s nice to have that moment, even fleeting, to feel that no matter what is happening that day, a complete stranger has at least somewhat walked in your shoes.
And believe me, they are not Jimmy Choos.
I often think how lonely it must be for the families with “orphan diseases”, with perhaps no connection to each other ever unless through the internet. Those of us embarked on the autism journey have become the Cinderella of disabilities (after the prince saves her from servitude, of course), and we’re fortunate to be able to immerse ourselves in such a wide-spread blanket of resources, information, and support. It seems everywhere I turn there’s a bumper sticker, a ribbon, or a story-line either beautifully or horribly executed on a prime-time television show. Through writing, speaking, legislation, and advocacy, references to autism seem to be everywhere I look, in every corner I turn.
We enter the sweet shop and begin to wrap up our revered January holiday, one dedicated to a man who simply embodied and helped define advocacy. I restrain Justin from making off with two pounds of fudge, reminding him once again, as with so many issues of greater import in his life, that he has to wait. In my mind I thank those parents, professionals and caregivers over the last half century who in their own passionate way have also redefined advocacy, by refusing to remain silent about injustices; by pushing for educational and federal reforms well before it was popular to do so; by adamantly and repeatedly denying anyone’s belief that our children are worth any less than ones without a label.
And for the zillionth time, again, I say thank you.
January 17, 2011
SPLASH!! I feel the briefest moment of warmth as the contents of our tub land on the back of my calves, and I turn around just in time to see my youngest’s son’s grin as he watches his older brother sluice soapy water out of his eyes. Moving two feet over to the edge of the tub to admonish Zach to be more careful, I of course then step directly into the puddle left in the wake of my child’s enthusiasm. I tell Zach to watch what he’s doing, and call to my husband to oversee their horseplay as I clearly require a wardrobe change. After making sure Justin’s alright, I step into the hallway to grab a pair of dry socks from the laundry pile, the one (in theory) I should have put away yesterday.
I rescue my appendages from the icy apathy of our bathroom tiles (oh, to live in a world where our powder room’s floor was heated), and return in time to see my husband head to the stairs to claim Zach’s forgotten bedtime juice. My boys are happily engaged, Justin looking into his sibling’s face and smiling, Zach grabbing his feet and tugging on them playfully. He gets a bit rough at one point, and I remind him that these appendages are indeed attached to the rest of his brother’s body, and he should take care not to hurt him. Zach drops his prizes and fixes me with his slate-blue stare, and says (with what I swear is a hint of condescension), “He likes it.”
I fix him back with my own slate-green gaze and respond, “How do you know that, exactly?”
Without breaking eye contact, Zach replies “He told me.”
Really. Five minutes with Justin in the bathtub, and you’ve managed to conquer his severe apraxia. And I thought I was the Annie Sullivan of autism.
I know from reading those child development books, the ones that actually apply to one of my offspring, that lying is a good thing in a three-year-old, implies access to an imagination, and a penchant for guile that are all considered “normal” for the pre-school crowd. I decide to play with this a bit and consider asking Zach what Justin’s opinions are on global warming, but instead I scale my query back to ask him what else my eldest has said to him lately.
He smiles up at me, oh-so-innocently, and says, “Nothing”.
Great. Five figures worth of speech therapy over six years, you get him to talk, and that’s all I get?
My husband has returned from rescuing Zach’s Elmo juice, and I fill him in on their “breakthrough moment”, and we both laugh and wonder what Justin will “tell” his brother in the future. Together we finish the bathroom routine, wrapping towels around warm little bodies, soothing them (hopefully) into slumber. Eventually, after several stories and five requests of “stay and sing to me, PLEASE!!!” we are able to exit Zach’s room, and begin the next portion of the day, the one where Jeff works and I hope it’s the day of the week Cupcake Wars is broadcasted.
I head downstairs and start the post-afternoon clean-up, but I can’t seem to get our family discussion out of my mind. Zach has never asked us questions about Justin, why he doesn’t talk, why “e”is his favorite vowel, why his organizational and technological skills are far superior to those of his mother. I’m guessing it’s because he is the younger child, and for the entirety of his life, this has been the only brother he’s known. His relationship with Justin is his version of “normal”.
I am aware my husband and I still have many hurdles left to conquer, one being how to explain Justin’s autism to Zach, and the second being how to explain Zach’s autism to him. While I respect anyone’s decision as to full or partial disclosure in a situation like this, I do feel strongly that we will tell our youngest about his own version of the disorder when the time is right, will explain it to him as best we can. There are some families who do not go the way of full disclosure, instead go to great lengths, even moving to different school districts, to prevent their “recovered” or mainstreamed child from knowing what they have, or in some people’s opinions, had. Again, I respect each family’s right to handle this dilemma as they see best. This is an intensely personal decision. I personally, however, am not a big fan of secrets, and even if I were, I don’t believe we really have that option in this family.
While controversy still rages as to whether or not autism is purely genetic, environmental, or a mixture of both, I think it’s pretty clear our collective family tree had something to do with both boys residing on the spectrum. There has to be some kind of genetic component involved, and whether Zach mainstreams or not, he needs to know that autism is a part of who he is, if only because he might have his own family one day.
And if Jeff and I do our job right, he’ll be at peace with it.
I’m not sure how to explain his brother’s journey to him however, why autism’s manifestations turned out so differently for Justin than they did for Zach. I don’t know when he’ll start asking us questions about why his brother doesn’t really play with him, or despite his claims, talk to him in any true fashion. I am certain that when he does start inquiring, unfortunately, I won’t yet have the answers.
I am so grateful, however, that I will be able to reassure him how much Justin loves him, will be confident enough to cite examples of his affection toward Zach that a young child might not recognize. I hope it will be a comfort to him to know that Justin used to wait outside his door when he was an infant, wishing we’d let him in just to peek and see that his little brother was still there. I will remind him how Justin stared sweetly at him so often in the bath, and that his elder sibling was always so amused by his pretend play. I will instill in him the memory of Justin’s hand placed gently on his cheek at least once or twice a day, touching base with his sibling, making an unprompted effort to forge that connection.
And I hope, boy do I hope, that proof of love will be enough.
January 13, 2011
My oldest son has his first crush.
Yes, there have been minor dalliances before, a connection with his chaperone at special needs church group, and a few flirtations with the cute girls in his buddy program when he attended public school. He’s reveled in their attention, even sought it out on occasion, but the look on his face when in their company has strongly resembled the one he reserves for both his mother and grandma. There’s been no special quality to his demeanor, just an unbridled joy that someone is playing with him, and whether that person has been ten or sixty has been completely irrelevant to him.
I realized my son’s feelings for this particular teen-aged girl had evolved from a more pure form of love to an actual crush this past weekend, when I witnessed the look on his face as saw her enter our home. Normally, he just jumps up and down with joy, parading his happiness at her arrival with absolute glee. But today, well, today was different. I watched in fascination as he shyly sat down and covered his face with his hands, peeking out at her between two loosely laced fingers. He didn’t rush over to her as he usually does. Instead, he waited for her to approach him with her usual hug, after which he buried his face in her stomach and wrapped his arms so tightly around her I was afraid she wouldn’t be able to breathe. When I acknowledged the transformation, the subtle shift in his emotions, I found myself having trouble breathing too.
He couldn’t have chosen a better person to be the recipient of his affections. This young lady is a neighbor of ours, has endured a rather difficult life at times, and has come through all of her battles with tenacious grace. She is bright, sweet, and possesses an innate sense of justice that she wields with impunity whether someone is being rude to her, or rude to someone she loves. There is an edge to her I didn’t discover in myself until I was almost thirty, and an optimism regarding the life she hopes will unfold for her that has garnered my complete respect. If I’d had a daughter (although now I’m fairly certain I’d never have the energy for that gig), I’d have been lucky if my offspring resembled this not-quite-girl, not-yet-woman.
I am well aware that this may be Justin’s sole foray into the world of “romantic love”, an opportunity where his affections, although of course not returned, will not be entirely spurned either. I am grateful for their interaction, this chance for him to be treated with kindness and respect, this time for him to be unguarded in his emotions. I know he’s lucky to experience this, and will probably have these moments a few years longer until this lovely girl goes off to college (unless my bribes to encourage her to remain around the corner actually work out). I am happy for him.
But of course, planner extraordinaire that I am, I can’t actually dwell entirely in the present, I must of course contemplate the future. I have to wonder what my son will desire in his lifetime, what, if he could speak, would comprise his own grand plan for his future. In an irony not lost on me, (and there are many of these in my life), I once worked as a young woman in a group home for autistic men. As most of them were non-verbal, I often wondered if they felt in any way that they were missing out on the trappings of “normal” life, if they longed for anything other than their structured routine, the chores and errands and meal-makings that bookended their daily lives. I remember thinking they seemed content, but this was several decades ago when communicative devices were not in abundance as they are now, and since they didn’t speak, there was no way to really gage the measure of their happiness other than with the absence of their angst.
I watch my son disengage from his paramour, gently take her hand and lead her to the computer room, and I acknowledge to myself I may never really know either what he wants, or what he needs, despite the incredible advances in technology now available to him. Requests for movies, snacks, and the occasional query regarding a hug are lovely, and I’m thrilled he can communicate them to me, but his technological device does not permit me to plumb the depths of his soul. And I will tell you, without equivocation, that even without the capacity for speech, even without the structured placement of verbs and nouns and adjectives, a lovely soul does there reside.
They both giggle as they mount the stairs, and my son throws the briefest of glances my way, an acknowledgement that mommy’s done right by him, that he is indeed, in this moment, supremely happy with his life. I remind myself, as I often do, that all we really have is this time, this particular moment, and I should dwell here and nowhere else.
And I promise myself, I’ll try.
January 11, 2011
So, last week I became a recipient of the “Stylish Blogger Award”, which doesn’t carry quite as much weight as a Pulitzer, but to me is a far more substantial win than that trophy I took home for second place in the seventh grade spelling bee (damn that “j” in pejorative). I was particularly tickled to receive it on two counts, the first being that it was awarded to me by a blogger who pens Professor Mother Blog, whose writing I’ve recently discovered and found to be quite insightful, honest, and funny (pretty much my prerequisites for anyone I read these days). The second reason I was pleased was that I found myself in quite illustrious company with the other award recipients, who were Diary of a Mom, Elvis Sightings, and unOtherOne, respectively.
Of course, my delight lasted approximately thirty-two seconds as I realized part of accepting the prize (okay, completely fake award, but work with me here) would mean responding to it on my own blog. This wasn’t an issue per se, but said response would also have to include cutting and pasting of images, and Dare I Speak Its Name, the creation of several hyperlinks. Given that there was the strong possibility my husband might be out-of-town by the time I got around to posting this, I have to admit I was a bit worried about my acceptance speech.
Look, I’m only insecure about technology, driving, and cooking (although the latter is more of an aversion that borders on learned helplessness). Hell, I’m a firm believer that we all have something.
Anyway, I’m giving this a try, and in order to fully accept my prize I am required to post seven things you don’t already know about me, then tap three (okay, I chose four, sue me) other bloggers and pass this award off to them. So ladies and gentlemen, read on (I know, the suspense is killing you):
1) While I was a fairly mediocre French major (although gifted at European café-drinking and train travel), I remain completely fluent in “Ubby-Dubby” (Ubif yubou dubon’t bublubieve mube, gubive mube uba cuball).
2) When holed up in my room as a child (probably blowing off my homework) I read every piece of sci-fi I could get my hands on (Ray Bradbury, you will always have a little piece of my teen-aged heart).
3) I am (sort of) double-jointed. It is not nearly as interesting as it sounds.
4) My favorite pre-married New Year’s Eve was spent at a Hofbrauhaus with my travel-pal-Sal in Munich when I was twenty, where there really was no language barrier a good lager couldn’t transcend.
5) While I have serious issues with organized religion and deeply question the existence of an afterlife (as in REALLY, can’t I just sleep through eternity, is that SO MUCH TO ASK), I am however completely convinced there are ghosts, and watch Ghost Hunters with complete fascination even when it’s not Halloween.
6) I’d tell you my two favorite foods, but I think it’s pretty clear by now what they are (HINT: one contains cocoa, one is poured).
7) When I am pissed-off at the world I get in my car and rock out to tunes from Evita, Stevie Nicks, and “Lady Marmalade” from Moulin Rouge. I find it is impossible to stay angry for long when singing a song about prostitutes at the top of my lungs.
I am going to diverge from the “rules” a bit and pass this along to a few of my faves, and am choosing only one autism site. The rest are blogs/sites that have nothing to do with autism or disabilities per se:
The first three women were incredibly helpful to me when I first started out in the blogosphere, and although I didn’t understand most of the suggestions they offered to increase my traffic, the ones I was able to decipher did make a difference. They are also lovely people and have fun sites, check them out when you can.
The last woman on this list happens to be one of my nearest and dearest from high school on, and is a fantastic (and published!) writer. Her genre is historical romance, I love her work, and recommend her highly. Aside from being a good read, her books are a fantastic escape, something we all need once in a while (or, if you’re me, quite often).
So check these sites out when you can, and thanks again Professor Mother Blog!