June 28, 2011
How Do You Really Feel?
I’m in the midst of trying to construct a “transformer” for my youngest child despite my lack of spatial abilities when I hear it; the cautious but concerned cry of my name from our upstairs bedroom. I take the steps as fast as my short little legs permit me, and almost collide with my quite perturbed eldest son and his teenage crush as they burst from the room, absorbed in a mission I’m certain only my child can discern. Justin is clearly agitated, and I quickly reassure our neighborhood angel that it’s not her fault, and attempt to conduct triage on the situation. Apparently, in the midst of one of Justin’s favorite computer games, he simply started pushing one button over and over and over, even though the program was functioning properly. He then became distraught and began what we like to call his “maneuvers”, rotating toys, book and picture frames throughout the second floor rooms (a practice particularly popular with his father). My wonderful helper turns to me with a look of dismay on her face and says, “I haven’t seen him like this in years. I just want to know why he’s acting this way so we can make it better”.
Oh honey. Join the club.
I’m not really surprised he’s having a meltdown, as he dwelled most of Friday night and Saturday in the land of the mild stomach flu, sick enough to find his usually coveted food repugnant, not sick enough to be furious at me for not taking him out the entire weekend, just in case. Despite having been a mother for almost eight years I’ve learned I have my limits, that vomit should be contained to garbage cans, toilets, and tile floors, not the back seat of my car or on a ride at Great Adventure. This philosophy lead us to an incident on Saturday where he watched me take his sneakers from his hands, put away his goody bag, and lead him to the bathroom, all to him signaling a tremendous set of worsening circumstances. While he sat on the potty regarding me with growing concern I gently told him we couldn’t go to his horseback riding lesson that day because he might puke on Snickers, and he simply stared at me, then turned away. Frankly, I wasn’t certain he even understood what I said. Then he swiveled his body back to me with a look on his face of utter pain and despair, threw his arms around me as I sat on a stool at his feet, and howled his rage to the heavens for three consecutive minutes.
In case I’m not clear in my writing, this particular child feels, and comprehends, everything.
As I regard my son rampaging in and out of the four rooms that comprise our upper floor, pulling me away from a cooking lesson conducted by my mother (and God knows I need it), I summon the last remnants of compassion I possess from what I like to refer as “imprisonment weekend”, and remind myself that he’s exhausted, upset, but recovered from his illness, and best yet, a mere two hours from bedtime. Between the two of us we manage to cajole him downstairs with the imminent promises of both a movie and dinner, and eventually he concedes to our wishes. Zach’s about had it with those forty-eight hours of imaginative play within which he’s immersed himself, so he’s thrilled when I break out one of Justin’s favorite Baby Einstein flicks, because at this point I’ll do anything legal to make that child happy until bathtime. I show him the familiar round disk, he smiles and jumps up and down in accompaniment to his favorite vowel sound, and I figure it’s yet one more tantrum averted on mommy watch. We are good to go for the next thirty minutes.
Hell, I still might learn how to make mashed potatoes before I turn fifty.
Justin’s paramour snuggles in between her two favorite boys on the couch, and I commence my return to what is now clearly my mother’s kitchen, when I sense trouble. It’s that low-grade whine that intimates a storm is brewing, and when I turn around, I watch said whine morph into full-blown yell. I sigh, because I am clearly devoid of any more tricks in my repertoire, and since I really want those damn mashed potatoes (extra butter, yummy!), this time Justin’s just going to have to suck it up for the next ten minutes so me and my mom can finish dinner. As I edge toward the kitchen I glance at his iPad resting in its secure spot on the coffee table, regarding me with animosity as it’s been ignored a good part of the weekend. I preferred to be safe rather than sorry, and since my seven-year-old figured out how to delete Proloquo2Go (his crucial app) in three unattended seconds last week, I was loathe to afford him the opportunity to vomit on the device itself.
I’m funny that way.
Instead of returning to the kitchen for what could be an episode of Worst Cooks in America (no, not you Mom, me) I choose to stride over to the table and swipe up his iPad, and march back to the couch. Baby Einstein is miraculously ignored as me, our helper, Zach and my mom hover around Justin, blocking his view of those obnoxious spinning dolphins who once made me nauseous when I was pregnant with Zach. I turn on the device, and for a moment am transported back to the excellent workshop I attended two days before, where all by my little self I learned how to change backgrounds to different colors AND create buttons without erasing anything crucial. I also recalled how the instructor was advising the participants as to the criteria for acquiring P2G for children, that although the goal obviously is independent communication for all individuals on the spectrum (in whatever form that might take), it was important to remember that no matter what augmentative device is utilized, there are no guarantees for spontaneous interactions. As she stated, A does not necessarily equal B.
Conquered that concept in algebra in 1981. Am reminded of it here on a daily basis.
I regard my writhing, unhappy son, and for the moment, banish my fears. He’s almost eight years old and bright, so bright, but the great communicator he is not. We’ve been through sign language together when he was young, with his desperate mother trying to figure out why he only asked for the same six items several hundred times a day. At two-and-a-half, after a solid year of immersion, he still only asked for those same half-dozen things, and then, only when they were dangled in front of him. He flourished with PECS, but again always required prompts, but since his repertoire of wants had widened considerably, he got more mileage out of this AAC. The Springboard was instrumental for his academic use, enabled him to show us he understood what he was reading by the comprehension questions he answered correctly on its tiny keys. But again, unless it was pushed on him, he met his own needs, and ignored the cumbersome red rectangle heartlessly. I’m hoping for better with the iPad, but as yet have to hand-over-hand prompt him to respond to my queries, and have literally had to corner him with the device to make him implement it. I’m not expecting Hamlet’s soliloquy from him. I just want the kid to run from one corner of the house to the other and ask for some damn juice without my hand in the small of his back.
I know. Those extravagant dreams again.
I look at the expectant faces of Justin’s family regarding him with concern, and I include our neighbor in this, because I’ve always had a rather expanded definition of family, and she most certainly qualifies. I navigate to the “feelings” page and implore my son to share his emotions with us, not because we’re in any doubt whatsoever (neither is the entire neighborhood), but because he might feel better if he just gets it out. He looks at me with unbridled disgust and resumes kvetching, but I’m just as obstinate as he is, and I start compressing squares. “I feel” is quickly coupled with “sad”, then I press the tool bar (I know, my mastery of the terminology is impressive), and send the sounds into our shaky universe. His attention is captured, and I gently push his curled up fingers toward the page, hoping he’ll respond next.
He doesn’t, but he allows me to press “I feel” and “mad” for him, and we are all witness to the ghost of a smile playing at his lips, which I swear he tries to suppress. I look down at him with hope and go for the gusto, saying, “Your turn, Justin”, and he scans, truly examines the words displayed before us, with a few tears still snaking down his cheeks, and presses “I feel” and “frustrated” in rapid succession. I don’t even have to prompt him to the tool bar, as he compresses it with enthusiasm, then looks at me for validation.
And boy, do we give it to him.
After enough hugs to smother our boy he sits up straighter in his seat, red-rimmed eyes mirroring a happy grin, a yawn encompassing the lower half of his face. For the last two hours of the evening he’s quiet, but contained. I like to think he’s found his arena to vent as satisfying as his mother does when she complains to her girlfriends, that like me, he finds immediate validation, then release. This does not mean he’ll ever ask me how I’m feeling, where his little brother is, or even spontaneously execute the simplest of mands without a subtle push. His brief sentence is not necessarily an arbiter of unforced phrases to come. I know, as with his perfectly uttered “mom” of months ago, this may be a one-time occurrence. But it’s something.
And this mom will take it.
Gratitude Attitude
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!
June 25, 2011
Baby Steps
Such tiny paths to progress, one would be hard-pressed to notice.
My eldest breaking free of his sitter, post-roller coaster, just long enough to gently squeeze my arm, and search my eyes to see if I had watched him soar.
Zachary lowering his head to his sibling’s lap without prompting, his brother not only tolerating, but welcoming the touch.
Justin’s hand gently ruffling his brother’s head, the slightest slip of a smile gracing his face as he finishes.
Such small gifts. Neither recovery, nor “normalcy”, words which have ceased to retain their meaning for me. Just simple moments to validate that both boys are safe, happy, and relate to one another. It’s not what I longed for years ago.
But these moments are still something, fleeting and fragile as they are. I hope I always take the time to see them.
June 22, 2011
In Your Dreams
“Mommy, I had a bad dream!” I hear Zachary yell at the top of his lungs from his room, for the second time in thirty seconds. I pause our flatscreen and race upstairs to hold him, more out of a desire to prevent his waking up his older brother than to comfort any of my youngest’s nightmares. I literally put him to bed four minutes ago, so I’m reasonably certain this cry of fear is truly just a summons for snuggling, a ploy for eking a little more of my attention out of the day. I manage to make it to his door before he unleashes his lungs again, and witness his wide, beaming smile as I cross the carpet to him.
He looks at me in utter earnestness, and lies, saying “I fell asleep and had a nightmare that the dragons were here”. I don’t have the heart to contradict him with the fact that he was only alone long enough for me to watch one commercial, which generally isn’t enough time to conjure up dragons, or any other unworldly demons. He stretches his arms up to me and I lift him with mine, inhaling that intoxicating smell of baby shampoo coupled with little boy, and retreat to the corner where our glider awaits.
I’m hoping my pause on a Weeds rerun holds. I sense this is going to take a while.
I am right, and it does. First there is the litany of lullabies to run through, of course in a specific order (who knew “London Bridge”, with all its inherent drama, can have a calming effect on a four-year-old?). Then there is the traditional recitation of “all who love Zachary”, which fortunately, takes quite some time to conclude. Last, there is the five-step hug/kiss/hand hug/”goodnight”/”now I can go to sleep” routine, which can never be varied if I actually want to make it out of the room before midnight. There are final reassurances, reminders to call me if those faux amphibians return, and eventually, a small child grants me permission to leave.
It’s good to know who’s boss.
I close his door, but my hand lingers tentatively on the knob, a bit reluctant to put closure on the moment. I am aware that me and my boy now exist in a time where I can often banish his fears, protect him from those imaginary predators who plague him. I am also aware this cocoon within which we are enmeshed will one day burst, and he will be required to wield his own sword against whomever in the real world conspires to frighten, or harm him. I am confident he will one day encounter the tangled webs of friendship, the challenges of acquiring an education, the tightrope walk of navigating his emotions and behavior. Physically, I won’t be there for most of it.
But I’m here now.
And I’m hoping my theory is right. I myself was enmeshed within my own cocoon of unconditional love for a good part of my childhood, a recipient of the constant embraces and praise of all four of my grand-parents, aunts and uncles who played with me, parents who doted on the only girl, and the only grand-child on both sides of the family for many years. That singular, dedicated love sustained me through many difficult times throughout the years. It contributed greatly to the core of who I am.
My husband and I can’t offer all of that to Zach. We don’t live with a set of grand-parents, and our families are more scattered now than they were in both of our youths. We have my mom, but often it’s just the four of us in this house, the only home Zach has ever known. I wonder, as my hand gently slides from the door and reaches down to pick up an errant sock in the hallway, if that unconditional love we’re trying to replicate will be enough. I want my boy to have friends, to be able to sit in a seat at school, pay attention, and learn. I desire for him a life consumed not by fright, but by joyous anticipation of the next fun thing just around the corner.
I simply want him to have a good childhood.
So, his father and I will give it our best shot. There will be discipline when required. Reassurances that we love the child even if we don’t love the behavior. Hugs and kisses galore. Hopefully, we will provide a strong foundation from which he might sometimes stray, but to which he will always return.
And if we’re very lucky, for this child, that just might be enough.
June 21, 2011
Gratitude Attitude
This week’s Gratitude Attitude goes out to both of my sons’ teachers, their therapists, and their aides. Justin and Zach have made tremendous progress this year, and it is in large part due to the collective efforts of the men and women who worked so hard with them at their respective schools. I couldn’t be more thrilled that they will be with the same teachers next year. I wish everybody a wonderful and restful summer!
June 18, 2011
Search Field Day 2011
“Mommy, where’s Justin?” my four-year-old inquires for perhaps the thousandth time, and I suck back my irritation (a technique I perfected during my twelve years teaching in elementary school), and tell him again, “soon”. A minute after imploring him for the millionth time to “please stop kicking my mutilated shin” under the picnic table, Justin indeed makes his glorious entrance. It’s Field Day at his school, and the festivities commence with every class from age three to twenty-one taking a promenade around the front entrance, until it’s finally my son’s turn.
Zach starts waving wildly as Justin’s teacher approaches and salutes him, and I crane my neck to look for my boy, hoping he won’t make a break for us and want me to take him home, as he has been wont to do in the past. Seconds later he comes into view, clutching the hand of his aide, looking mildly confused since he’s never participated in this pageant prior to today. He steps down off the curb and sees me, his grandma, and his little brother across the empty parking lot, and stops dead in his tracks, holding up the entire procession. I hold my breath to see what he’ll do next.
And then, he smiles.
This isn’t just any smile. This is his hundred watt, “I can’t believe three-fourths of the people I love the most are here right now” smile. With mild prompting from his para he waves, then continues on his way, checking back periodically to see if we’re still there.
Trust me, we’re not going anywhere.
Frankly, as I sit on my cold folding chair and watch the students of Search Day School parade by me I am ecstatic, because even a year ago, I would not have been able to remain at this picnic table. Although Justin enjoys parties, in his mind I am generally his primary reinforcer, or the equivalent of Disney. During his early childhood years in his first public school placement, I spent many a desperate hour in his classroom trying to convince him that musical chairs and chips were a far better deal than going home with mommy. There were entire years in our local school district where I didn’t attend any of his parties save the one dedicated to his birthday, which killed his shutter-bug, stay-at-home, mom. It came down to this, as things so often do with autism- my having to choose to participate in a party which made me feel like a good mother, or boycotting the event and letting him have fun. I grudgingly chose the latter most of the time.
But as I look at him now, I realize at these events, I may finally be eligible for front row seats.
The children circle around the entrance way and reenter the building, as classes are staggered for this extravaganza, and it will be a good twenty minutes before we see Justin again. Since that doesn’t meet with King Zachary’s approval I take him on several walks around the premises, craning my neck back periodically to make certain we don’t miss Justin’s second debut. We wend our way back through brightly decorated picnic tables in time to see Justin march to the field for the first of his feats of strength, and I simultaneously watch my youngest commence meltdown mode.
This is completely inconvenient, as I seriously require commemorative photos of this event. Otherwise, my scrapbook will be devastated.
Just as I think I’ll have to do a “Sophie’s Choice” with my children, Jodi Ussuri, administrator extraordinaire, steps in and offers to take him off my hands for a while. Zach deigns to take her hand and walk/skip/hop/jump/run with her, which is not surprising since she has three kids, and is clearly a fun mom. When her babysitting stint is over, the words “bless you” accompany Zach’s tiny paw as it is handed back to me. These are words I frankly should have imparted to her, as the absence of my youngest enabled me to witness my oldest’s glory.
And glory, it was.
Sure, it was lovely that Justin carried an over-sized ball across a field successfully, then bounced on it as his classmates followed suit. Under his watch not one single tennis ball escaped the confines of a waiting barrel, deftly maneuvered for guaranteed capture by school personnell. He navigated a balance beam with relative ease, and at least attempted to sneak under the “luau-esque” wooden rods adjacent to those parallel lengths of wood.
In other words, Justin rocked Field day.
While I was thrilled by how far he’s come within the physical realm of things, happy to see him willingly and successfully participating in events requiring balance, concentration, and manual dexterity, there were a multitude of far subtler reasons I was grateful to regard these activities. Throughout every single request and demand, I witnessed my son’s eager compliance. I watched as he patiently took turns, neither rushing through nor attempting to avoid the task before him. Most importantly, I saw my son search for his family at every single station, executing his dazzling smile at us before switching to serious concentration mode, overjoyed we watched him perform.
Not only did he enjoy the festivities, he was ecstatic his family was there to cheer for him. Trust me, me and my mom are still hoarse.
Eventually, it literally rained on our parade, and students were hustled inside to consume their lunches while the three of us escaped to Panera for soups and salads (what a win-win day!). We returned to take home an excited Justin, a child happy to escape his routine whenever it includes going home early with me. As I walk him back to the car, I reminded myself that it’s not just the efforts of this particular school staff that have brought him to this place. In every moment of desired behavior, every nuance of glorious grin I received from my boy today, is the work of five schools, dozens of aides, teachers, specialists, doctors, Early Intervention workers, the fortitude of two parents, a patient brother, and the stubborn zeal of one determined grandma.
It takes a planet, not a village, to raise a kid like Justin.
We reach our waiting SUV chariot, he sees my mother and his sibling, and it’s like Christmas morning all over again. I strap him into his seat, kiss his forehead and tell him how proud I am of him, activate the GPS (just in case), and head for home.
And as we glide into traffic, I remind myself to live a little in the moment, and just be happy we’re here.
June 15, 2011
Heaven and Earth
“Mom, what’s a soul?” my smallest son asks me as he runs pell-mell toward the end of the pier, his middle-aged mom trying desperately to keep at least five feet from his retreating backside. I gather my thoughts in the amount of time it takes me to pretend I’ve caught up with him (he always slows down out of pity), and together we collapse at dock’s end. I’m about to respond when he follows up with “Mom, when will you die?”, which knocks the breath out of me far more than this run down the fishing pier ever could. I silently curse my husband under my breath (he’s never around for the good questions), gather Zach into my lap, and remind myself that he’s four, and that it’s still okay to lie to him.
Hell, I might even save him six months of therapy down the road.
I’m not a strong believer in the afterlife, although perfectly happy to encourage anyone to embrace whatever gives them peace. At forty-four I anticipate I’m about half-way done, and since the last decade has been such a blast, what with the infertility years, the miscarriages, and the two kids with neurological disorders, I figure I deserve a good rest. If I make it to my eighties and Justin (in theory) has a safe place to live, I’m completely comfortable with taking a long, quiet, permanent nap. As long as there was some good wine, dark chocolate, and a Stevie Nicks song or two in my last moments to ease me into oblivion, me and the Grim Reaper, well, we’re good.
Unfortunately, I’m certain me and my four-year-old won’t quite see eye-to-eye on this one.
I must have waited too long to respond, because his next query revolves around the possibility of dinosaur heaven, and I know I’d better quickly address his questions before he forgets he’s asked them. I remind him that when we die our bones remain in the ground, and sometimes people go to visit those bones in graveyards to say hi to the people they’ve loved. I tell him that souls are the best parts of our spirits, the special qualities of who we are, the “stuff” that makes him Zachy. I share with him that (please dear universe) I won’t be dying for a very, very, long time, but that someday we’ll be together in heaven, along with Daddy and Justin, and yes, the soul of the dead squirrel in front of our house that he won’t stop talking about.
He looks at me quizzically, and I can see he doesn’t quite buy what I’m saying. Perhaps there will be an added six months of therapy after all.
These dialogues are new territory for me and Jeff. My “conversations” with Justin never delve into the world of imagination, instead remain entirely concrete in nature. There were a few years that despite his intelligence I wasn’t certain he understood even my simplest commands, such as “pick up that toy” or “please eat”, or, more frequently, “stop pinching me now”. We also entertained the idea that he did comprehend our requests, and simply found them far too mundane to concede to them. Trust me, if you could have seen the frequent looks of disdain I received while trying to convince him to engage in a far less motivating activity than the one he was clearly enjoying, you’d have had your doubts too.
Justin’s matured a great deal in the last few years, and now I’m absolutely certain he comprehends what we’re asking him, as now he usually complies with our first request. When it comes to the land of imagination however, the Santas, Easter Bunnies and Tooth Fairies that usually command a great deal of play in childhood, I’m almost certain he doesn’t consider them. I’m pretty sure that giant rabbit on the Easter bunny train was just a sweaty guy in a big white suit to him, and since he derives pleasure from the holidays in his own concrete fashion, I’m fine with that.
Besides, it’s one less kid with whom I’ll ever have to have the “death talk”.
With Zach, things will be different. I’ve already tried to explain the concept of “bad people” to him (“but Mommy, if you’ll protect me, why do I have to scream “NO!” and run from them?). I’ve attempted to interpret for my youngest why Justin destroys his favorite books if we don’t catch him quickly enough (I’d like someone to explain that to me too), and that’s it’s unacceptable for Zach to follow suit. We’ve had entire rapid-fire discussions about volcanoes, earthquakes, and tornadoes that have had me dashing for Google at lunchtime.
Trust me, it’s been a while since Mommy’s fifth grade science class.
I have to admit, I love it all. From the questions about the vagaries of weather and the lifespan of butterflies, to queries about the afterlife, I find his inquisitiveness so compelling, his curiosity a joy. These dialogues are a double-edged sword however, because I also know I’ll never stop yearning to have them with Justin. Although we convey so much to one another with our collective gaze, I’d still move heaven and earth to hear him utter something other than the word “mom” before I go.
Try explaining that expression to a four-year-old.
Eventually Zach clambers out of my lap, apparently satisfied by what I consider my lame explanations. He proclaims his desire for “juice and pretzels”, and I know our existential portion of the day’s events is concluded, and we’ll soon head for home. I take his hand, and for once he is quiet, perhaps exhausted by his run, or his perennial quest for knowledge. His mommy is exhausted too by the necessity of answering things “right”, although I know sometimes, I won’t. That’s just the nature of parenthood.
But this morning at least, we’re okay. And the one question I know neither one of us needs to ask, is who needs a good nap.
June 14, 2011
Gratitude Attitude
Today’s Gratitude Attitude is extended to my mom, for helping me take care of the boys while Jeff was attending a conference in Boston last week. For those few days life was “uncharacteristic chaos”, and I appreciate her time and energy so much. All hail to the power of Grandma!
June 11, 2011
Riding High Farm
My oldest son Justin is a confirmed horse lover, and has been happily participating in lessons now for well over a year-and-a-half. When I first started taking him however, I really didn’t think he would last the month. I based this assumption on his attitude during his first encounter with a horse, which occurred through the graces of a fund-raiser for POAC hosted by Rein Dancer Therapeutic Riding Center , an encounter which ended after ten minutes. I can honestly say Justin’s desire to dismount during that period of time was matched only by my aversion to getting off the couch after 9 PM.
Not a pretty sight on either count.
Fortunately, over time my son has not only discarded his disdain for our equine friends, but has come to regard his lesson as the best half hour of his week. For him, this is now an activity that ranks second only to a visit from his “girlfriend” from down the block..
With Justin, women will trump horses every single time.
As his affection for his four-legged pals grew, I began to think that maybe one day we could turn this hobby into a skills-based pursuit, and I started to look around for summer camps for riders with disabilities. Even in New Jersey they are few and far between, but I managed to locate one within an hour or so of our house that has an excellent reputation. Riding High Farm fit the bill, and has been providing quality lessons for individuals who are physically and cognitively challenged for over thirty years.
Last summer Justin not only was able to ride a horse twice a day, he also learned safety tips, grooming skills, and some of the chores necessary to keep such beautiful animals alive. In short, he had a lot of fun, and acquired potential job skills simultaneously. It’s my dream that he’ll live on a farm when he reaches adulthood, and experiences such as this one might help him get such an opportunity one day. I signed him up early this year just to be on the safe side (for my frequent readers, that should surprise no one). I even remembered to check in last week to make sure they’d received my check, and to reassure myself that Justin’s blond mommy had remembered to send in all of the necessary paperwork.
I spoke to the owner who reassured me that all was in order. Then my heart fell as she also shared that this year, enrollment was low. With this economy, that doesn’t bode well for the future. Since this is one of the few leisure pursuits that Justin actually adores, I mean both his future, and mine.
I told them I’d get the word out about this organization, in the hopes they’d procure more patrons for the three weeks of camp they’ll be offering this summer. If you reside in New Jersey and have a child with any kind of disability who’s able to ride, Riding High is definitely a place worth checking out. I’ve posted a few photos from Justin’s experience last summer, as well as the link below. Even if this is not of interest to your child, I’d appreciate it if you could pass on the link to anyone for whom it would.
Last, I’d just like to say that the people who run Riding High are exceptionally kind, and had absolutely no issues handling my (at times) cantankerous child. We only attempted half day camp this year, but things went so well for Justin we’re going to give full-day camp a go this summer. You can bet I’ll let you know how it goes.
Thanks for your time, and Riding High, a special thank-you for giving Justin one of the best weeks of his life in the summer of 2010. His family appreciates your efforts, and we’ll see you in a few weeks!
http://www.ridinghighfarm.org/
June 8, 2011
Alphabet Soup
It’s Friday afternoon, and I’m trying really, really hard to suppress my irritation as I drive, and losing the battle miserably. I’m on my way to Justin’s new neurological pediatrician with husband and boy in tow, unhappy because we went to the wrong office, and now we’ll be late for our appointment. Justin had his intake at their facility in north Jersey months ago, but somehow Jeff and I both missed that this practice has two offices in the central part of our state, and now I’m cursing under my breath that I didn’t check the website more thoroughly. I look at my car clock once again, and sigh. I placate myself that getting Justin in and out of the first office, for the most part, was easy. Except for the fact that for the first time ever my eldest was scared in an elevator, which prompted him to launch his seventy-pound frame into my arms in the hopes I’d carry him out of it, we’re still okay. I’ll need a chiropractor immediately, but we will be okay.
We’ve switched clinicians in part due to that waiting room incident, but also because my husband and I have come to believe that Justin has a dual diagnosis of ASD and OCD, and we’re hoping to have fresh eyes assess the situation. The secondary diagnosis of obsessive-compulsive disorder has been largely dismissed by Justin’s practitioners in the past, all of whom have thought that his rigid adherence to ritual is simply a facet of perseveration, a central tenet of autism. His father and I think it may be something more.
Last month we were fortunate to have the BCBA from Justin’s school in our residence for a few hours to assess his “maneuvers”, the rotation of DVDs/CDs/picture frames/shoes/plush toys that consumes him, and drives us crazy. This gifted woman with decades of experience with children on the spectrum validated our concerns, agreeing with us that some of his actions were a function of the repetitive aspects of a spectrum disorder, but the duration and severity of his focus indicated something else was amiss as well. Jeff and I subsequently figured it was worth the hell of finding a new doctor, and made the calls.
We pull into the parking lot of the hospital complex a mere three minutes late, and since at our first visit this woman seemed to be the paragon of compassion, I figure she’ll let our tardiness slide. We whisk Justin into the waiting room and check him in, and my husband makes sure the receptionist has our new insurance information while I attempt to keep Justin from barging in on a surgery. Our new neuroped takes us almost immediately, which further endears her to me, and I quickly tote goody bag, boy and purse into her well-lit and child-friendly examination room. Not only is there space for the four of us to sit, but there appear to be actual “autism-interesting” toys for Justin’s perusal as well, and once again I’m grateful we put him on that long waiting list last summer. I find myself almost giddy at how simple the entire affair has gone.
As I’ve said before, it doesn’t take much these days.
At our last visit we broached our concerns about the possibility of Justin’s sporting a second disorder, so we spend a good portion of our appointment time discussing how he’s doing at school (beautifully), his behavior at home (save for the constant house reorg, wonderful), and the numerous interventions we’ve attempted. My husband and I share with her the opinion of our fabulous BCBA-for-a-day, and reiterate we’re aware of the difficulty of culling out the perseverative aspects of his behaviors from those that might be purely of a compulsive nature.
Eventually, we stop talking, and listen.
Our learned practitioner concurs with us that dual diagnosis is difficult, and perhaps at the end of the day, immaterial. She says that from what she’s heard it is probable he has both disorders, and she’s willing to state it for the record. We discuss our “plan of attack”, which begins with increasing the dosage of his current medication, then perhaps exploring others if this intervention fails to mitigate the situation. We are given time-frames and parameters for using this approach, and she throws out the names of other potential medications. Our doctor gently informs us that things might get worse for a while before they get better, if they get better. We are reminded that none of this may work because he has autism, as well as OCD. Finally, our new physician gently tells us that it may take months to see a change, if any, because finding the right SSRI for OCD is a complicated task.
Hmm. Ambiguity in a treatment plan. It seems we’ve been here before.
As Justin begins to tire of the toys he initially found so fascinating, his father and I simultaneously wrap up our little tete-a-tete with Justin’s doctor, whom I’d recommend unequivocally to anyone (and that doesn’t happen often). We gather our stuff, thank her, and as Jeff heads to the exit with our boy, I tell him I’m going to make our next appointment in person, so I don’t have to remember to place the call next week. When I finish reconfiguring the chess pieces of our summer schedule I have an appointment secured, and head rapidly back to the exit so we can attempt our return home prior to rush hour.
In the distance I see Jeff struggling a bit with Justin’s safety harness, and I heighten my pace because I know how frustrating those buckles can be, and frankly, I’m just better at it. I know I have almost an entire minute alone to process this dual designation before I’m reunited once again with my family, and, I quickly assess my emotional state (I’ve become expert at this over the years). Unbidden as I walk, the tune from the “alphabet song” enters my head. There is a slight variation on a theme this time with the words “ABCD, ASD, HIJK my son has OCD” inserting itself into my fatigue-ridden brain.
No, I’m not sure where that came from.
I continue on to the car, and realize I’ve suspected this outcome for years, am far more interested in whether or not this knowledge can help alleviate some of his more troubling symptoms than whether or not he has a second “label”. So many recent studies seem to suggest that a variety of disorders comprise one big happy family, with ASD, OCD, ADD and others perhaps fighting for purchase on one or two chromosomes. Perhaps we’ll add more letters to his “alphabet soup” along the way, perhaps not. At the end of the day, what he has is irrelevant to who he is, and how much he’s loved.
And as I leave the parking lot after a brief skirmish with my spouse over which direction to turn (he was right, I know, it’s shocking), I remind myself that on the bad days, and yes, there still are bad days, that this absolute truth is what I need to remember most.
