April 28, 2013
It’s Thursday morning, just a regular day before school starts, and I am trying for what seems the hundredth time this week to figure out something my eldest child will possibly consume for breakfast. Over the course of the past seven days I’ve hawked three different cereals, pancakes, waffles, even French toast, all to no avail.
I hate sending him to school on an empty stomach, but I seem to have run out of options as I whip eggs and milk into the frothy concoction which will soon fill up my stomach. I’ve offered Justin eggs before, which he has regarded with all the enthusiasm of a patient approaching an overdue root canal. Today, just for the heck of it, I turn to look at my tall son who is immersed in his DVD player and ask “Justin, do you want eggs?”, fully expecting no response whatsoever.
And in mid egg-flip, my son looks me in the eyes and nods an emphatic yes.
I fling the spatula down on the unsuspecting stove, and run over to my boy, afraid I’ve misinterpreted the first time Justin has answered a “yes or no” question in our home. I turn off the DVD player and angle him toward me, and pepper him with queries I’m certain he’ll soon find tiresome.
“Is your name Justin?” (nod yes). “Is your name Zachary?” (nod no). “Do you think your mom’s gone crazy?” (okay, I didn’t really ask that one, but contemplated it for a moment there). Truth is, I asked about a half dozen more close-ended questions, and he responded appropriately every time. I did what I lovingly call the “happy language dance”, rescued my almost-doomed eggs, and served my son a generous portion of my take.
First a few spontaneous exclamations of “Mama”; then requesting me unprompted on the iPad; now this. As I drink my orange juice, I admit, I’m a bit verklempt at these new developments.
I recently read a study informing me that while researchers previously thought that the language window swung firmly shut on most autistic children by age four, newer studies have shown that most children on the spectrum do acquire some language. In fact, the study says that almost half go on to be fluent. While we’ve kept Justin in private speech therapy and continue to work with him at home, by the time he turned nine and had shown no real progress, I began to let my dream of him having some semblance of functional speech go by the wayside.
My disappointment was somewhat mollified by the fact he is able to use his iPad quite functionally, particularly in school where he employs the device for requests and academics. In those dark, desperate days of toddlerhood when his primary method of communication was digging his fingernails into my tender flesh, I used to pray for any methodology whatsoever which would facilitate communication, be it technology or a Ouji board (again, those were desperate days).
As he’s grown and has shown great aptitude for various media my fears we’d never share even the most rudimentary standards of language disappeared, and I’ve grown quite fond of ProloquotoGo, the program through which he is able to make his needs known. Still, I admit deep in my soul I longed for a word or two, or even for him to have the capability to answer those simple yes and no queries without running to his device.
Now, he can.
There’s a great article on the Autism Speaks blog by Geri Dawson, outlining new findings about speech in autistic children, and nine other things we know about autism that we didn’t know a year ago. Among those findings, researchers are developing medicines to address the core symptoms of autism, namely communication deficits, social withdrawal, and repetitive behaviors.
Symptoms of autism are now being detected in children as young as six months of age. Prenatal folic acid, taken in the weeks before and after a woman conceives, may reduce a child’s autism risk. We are slowly making progress in deciphering autism’s many mysteries. My son, after a long, sometimes agonizing wait, is making progress too.
His mother couldn’t be more proud.
March 12, 2013
Dusk is fast approaching, and as I swing into Justin’s speech therapist’s driveway I see a shadow rocking back and forth behind her glass door, its rhythm momentarily interrupted by the arc of my headlights as they cut across my son. As I turn off my engine I hear Justin register his approval at my arrival, his happy “eee” cutting across the lawn as I make my way to the front stoop. He is beaming, and I can tell he had a good session by the look on his face, and the similar expression on his therapist’s.
“How’d it go?” I ask, as Justin simultaneously shoves his big red goody bag into my arms and tries to push me out the door. “Today was pretty big” she replied, and I thwart Justin’s plan by putting down the red bag, and giving her my full attention. “While he was waiting for you at the door, he asked for you without prompting” she says with a grin, and mine matches hers, because we both know this is a momentous moment.
My boy wanted his momma, and he asked for me with words.
Justin’s been using the iPad more at home and in the community, and just a few months ago asked for me spontaneously while using the device (I was on a twice yearly shopping expedition with my sister-in-law and niece, it figures). We’ve been practicing the sentences “I want Momma”, “I want Papa”, and “I want Zach” (the last uttered sans “Z”, it actually sounds cooler that way), but to date they’ve always been prompted and repeated out of context, perhaps after teeth brushing, or while waiting for the school bus.
It’s been exciting to hear my eldest child utter a full sentence, fun to hear Zachary (the child who never stops uttering full sentences) cheer his big brother on and encourage him. To me, however, the entire process doesn’t mean much if it’s conducted without meaning, if the sounds are solicited from him when he may very well be thinking about his bed, or popcorn, or the hundredth rendition of “The Very Hungry Caterpillar” that I will likely be reading to him that night. His mother craves context, and today, I believe my son has given it to me.
Today, he waited at the threshold, was asked what he wanted, and clearly requested my presence spontaneously for the very first time. In the movies, I would have driven down the cul-de-sac immediately as the last strains of his short “a” sound drifted into the atmosphere. In real life, it took me a few more minutes to arrive, which gave him time to make a half dozen more attempts to verbally summon me, enough effort for his therapist to make certain she’d heard him correctly. To be completely honest, I’m not sure how many people would comprehend the first two-thirds of his phrase, although with satisfaction I say that his “momma” is clear as day.
It’s taken a decade of work, but every vowel, every hard-won consonant, was worth it.
As always, I have to follow this accomplishment with what I like to call the “autism caveat”, which includes the fact that in the future he may only repeat this charming sentence on demand, or perhaps never again. Although his talented speech teacher could easily get him to recreate the experience for me now I won’t ask her to, because it’s enough to know it happened of his own will, his own ability. For just a moment I recall that studies proclaiming that children with autism who don’t speak by four have recently been proven false; that in fact, more than half become proficient speakers, and two-thirds can master simple phrases.
Then my son once again shoves a heavy, huge red bag into my hands, looks at me with utter urgency, and propels me to the door handle. Time for this momma to cease her musings.
I capitulate to his demands and release him from this house, but I am elated at his triumph, and for a few moments I allow myself to bask in it before I contemplate what I’ll make for dinner. I hug his teacher good-bye, and follow his galloping form back to our vehicle, his own sounds of triumph at escape punctuating the brisk air. I acknowledge we just might have the start of something great here.
And as I buckle him into his seat he grins at me, and I swear he knows exactly what he’s done.
December 1, 2012
It was the tiniest thing. Three little letters, “M”, “O”, and “M” respectively, all painstakingly typed on the iPad keyboard by my eldest son as he worked through a mini-tantrum at home. There wasn’t a parade, no medal nor monument was issued. His efforts didn’t magically conjure up my presence, due to a prior shopping engagement with my fabulous sister-in-law and equally fabulous niece.
The act wasn’t duly noted on CNN (or even Fox, although I feel it should have been). No fireworks ensued other than those elicited by my son momentarily when he discovered all his hard work was for naught. After all, it was just three letters, nothing to get excited about.
Except it was, as it’s the first time Justin has ever generalized a demand from school to home on his iPad keyboard. When I heard the news I practically did a cart-wheel in the middle of the Jersey Shore outlets (which frankly should have earned me a discount SOMEWHERE).
I don’t know that he’ll ever do it again. There is, of course, the annoying little voice plaguing me saying since he wasn’t reinforced for the effort it won’t reoccur (but I slapped that little voice silly as I REFUSE to pair shopping with anything negative). There is also the knowledge that even if he wasn’t devastated that I didn’t come to his immediate rescue from his father and the fun babysitter, he still might never ask for me again.
I killed that little voice too. I’m on a roll.
No, in keeping with a new year coming in and all that jazz, I’m taking a positive spin on this one. His teachers have been working diligently to get him to type, in part because we are all in agreement that this may be his sole method of communication over his lifetime, and in part because his handwriting is almost as execrable as his mother’s.
He’s made similar progress at home as he’s done in class, but we still hadn’t achieved that leap from telling him what to say (he spells and reads fabulously, so no coaching for most words necessary), to having him tell us like it is on his own.
That is, until Black Friday. It truly is a magical day.
So fingers are crossed that 2013 ushers in an entire new world for Justin, a journey I know will begin with simple forays into conversation, and will end no one truly knows where. The really exciting part is that my son left his snack on the table (abandoning food in this family is serious business), searched out his iPad in a different room, and controlled his angst long enough to ask for what he wanted.
It’s been a long nine years (that is an understatement), but he’s finally learned enough self-control to put his emotions aside and try to get his needs met through typical means. I couldn’t have been more proud if he then followed his request up with “Mom sucks”.
Because at that moment, in his world, I did. In my world however, I was haggling over earring prices with a harried sales assistant and having a blast.
As Thanksgiving weekend concludes I have to say I am incredibly grateful for so many things, but sometimes it’s the tiny packages that capture my attention. This is one of them. And my hope for all of you, especially those of you with special needs children, is that many of those pivotal moments are out there around the corner, waiting for you to recognize them soon.
It was just three little letters.
October 1, 2012
He runs with surprising speed from bathroom to bedroom, towel trailing behind him as I beg him to return to no avail. Over the past two weeks my eldest has created this game for his own amusement, one in which a dripping wet boy tries to dive into dry sheets before his middle-aged mother can prevent him from doing so. Somehow, almost every night in September, he had negotiated the space in our bathroom between me and freedom with absolute ease. I have had to track him down each time to prevent having to change his sheets, a chore I seem to despise even more in the evening than I do in the early hours of day.
Tonight, however, I’m on to him. He races into his room with his mother mere inches from his dripping torso, but for once, he stops short of his bed. Justin is staring at his bookshelves with a look of wonder, and I watch as a huge grin glides across his face. I take the opportunity to wrap him up again in his warm cotton Cookie Monster towel, and congratulate myself on winning this round.
It’s a small victory, but it’s mine. I’ll take them where I can get them.
I know exactly why he’s so happy, and watch as he grazes the spines of his reading material ever so gently, pushing back a few books so that all are flush with one another. His joy is twofold. First, he recognizes that the literature has changed, because his mother has succumbed to the demands of a better-late-than-never spring cleaning, and has finally purged the baby books that have graced his shelves for far too long.
Last, he realizes I’ve tucked his favorites from infancy and toddlerhood into one of the upper corners of the shelves, because I simply can’t bear to part with them, no matter how ragged and torn they are. I watch as Justin jumps up and down with delight, and I take the opportunity when he’s airborn to maneuver him across the hall back to tiled floor, and the lonely toothbrush that is awaiting him.
I’m thrilled, because it’s the first time I’ve seen him excited by a book in ages, and this used to be “our thing”. Besides, who can get rid of Eric Carle?
We quickly conclude our bedtime ministrations, and Justin dashes back to the bedroom, impatiently thrusting his pajamas at me so we can get down to business. Memories flood back to me or our house in Virginia, where toddler and infant Justin forged his appreciation for words and illustrations, and his mother reveled in our shared interest. For years books and Baby Einstein videos were the only vehicles available with which to soothe his tantrums, and since I could only watch spinning teddy bears so many times, reading material usually won the day. My small son and I spent many an hour cuddled on the couch under a comforting blanket, finding out the fates of errant spiders or ducks with unreasonable demands. Quite often we’d drift off to slumber mid-sentence.
Reading is hard work after all.
Unfortunately over the last few years his penchant for books has waned, and has been replaced by an unfathomable desire to destroy his once cherished friends, a symptom of his autism I know I’ll never comprehend. I often have to read to him while in motion, at times holding the book in question over my head until his urge for capture has disappeared. I long ago ceased engaging in this activity in his bedroom, as I’d invariably be greeted the next morning by the remnants of a good read in his waste basket. This was despite the fact that he was thrilled beyond reason that I’d shared said read with him the night before.
Yet another mystery of autism I’m confident won’t be revealed to me any time in the near future.
Although I’m wary about reinstating our bedtime ritual I’m also hopeful, because the key with Justin (and almost any child) is to let him lead, to see the world on his terms, to embrace his whims whenever possible. Maybe the subtle changes on white shelves has renewed his interest. Perhaps seeing all his favorites from infancy banded together has inspired him. Maybe tonight he’ll let me unveil a story to him once more, will permit me to indulge in a pastime I too have loved since toddlerhood, one that once bonded me to my son in a way I never thought possible.
Of course, there’s no pressure surrounding this moment. None at all.
He selects one of his all-time favorites, worn and weary but still viable after nine years, and settles into my lap. My eldest sits quietly as I proceed with the story arc of one ravenous caterpillar, and I recall how when he was younger reading was the sole pastime where he was still, where his overabundant energy was finally (and for his tired mother, gratefully), contained. Eventually, both emerging butterfly and boy are satiated, and I offer to read him one more. He slides off my lap and firmly replaces his find, looks me right in the eyes, and throws himself onto his bed.
Normally at this point I would have been wrestling his preferred author out of his hands, but tonight he seems at peace with his choice, and with my having read it to him. I do however wrestle with whether or not to leave Mr. Carle’s work shelved with his other stories, and decide to throw caution to the wind. I wrap my not-so-small-son up in his rocket sleeping bag, and throw his softest blanket on top of him for good measure. Justin bears with me as I butcher the trilogy of lyrics I’ve sung to him since he was little, then gently and firmly pushes me off his bed and toward the door. I bestow one last kiss on the nape of his neck, the only stretch of his skin left showing, and head for the hallway.
Over the years, I’ve finally learned how to take a hint.
I have no idea what will be waiting for me in the wee hours of the day to come, but then again, that is true of everything. Over the past few months I’ve watched Justin take an unpredented interest in his little brother, the ramifications of which could encompass a post all by themselves. I’ve witnessed his increased ability to wait for his whims to be satisfied, often without an accompanying pinch, or whine. He’s even embraced mini-golf, which since I remain the mini-golf queen (at least in this family), has only endeared me to him further. These are subtle changes, no parades evoked, no monuments erected. They simply are evidence of happiness, an increasing desire to try new things (and reinstate old), and perhaps, most importantly, a sign that Justin is learning to embrace change.
And as I gently close the door behind me, I silently thank the universe for a good night.
April 4, 2012
It’s been almost six years since the McCafferty clan took a family vacation together. This is in part due to the fact that more than half a decade ago we relocated from Washington, DC back to the Jersey shore, which when not obnoxiously crowded, is a vacation in and of itself. We also eschewed travel because within months of taking up residence in the Garden State, I found myself quite unexpectedly pregnant
For obvious reasons, the prospect of a trip with a young son with moderate autism, coupled with an infant, was terribly unappealing to both me and my spouse. Finally, just as we were beginning to consider leaving the house again our youngest son regressed, losing almost all of his speech and his spark in a matter of weeks.
Let’s just say at that time, travel wasn’t at the top of our priorities.
It’s been a few years now since those wretchedly grim days, and although Justin has chosen to enter a decidedly challenging phase, I’m beginning to feel I must heed the call of Disney. Zach will be almost six this fall, Justin is pushing nine, and I’m beginning to think we have a window in which to attempt this, and it’s starting to slowly close. Given that I’m pretty tired these days, I may not be pushing it open in the near future. It’s time to bite the bullet and give it a go.
So happy they still serve wine on planes.
We’re beginning to gather our resources for the trip, showing Justin ancient VCR tapes from his grown cousins that describe the myriad pleasures of the resort, and most importantly, have a “run-through” planned at a Philadelphia airport (I will write more after it takes place this month). Quite honestly I will discuss the possibility of sedatives for the plane ride (no, sadly, not for me), as there is not a chance in hell we’re all driving to and from Florida together. If we can pull this off, I intend to fly there and back with the same amount of kids with which I started.
I know. Those extravagant dreams again.
There is one resource that will be an integral component of our trip, what I like to call my “travel-Bible”, a gem-packed list of travel tips for travel with a child on the autism spectrum. It’s called “Traveling with your Autistic Child” by Babette Zschiegner, and I will have this tome practically adhered to my body throughout our entire stay. Yes, in the interest of full disclosure, the author happens to be my friend, is in fact one of the actresses in my play, “Raising Autism”. It’s still a great book, and I anticipate it will be saving my sanity on at least several occasions as we attempt this adventure.
That, and of course, that glorious wine.
There are several wonderful features about her writing. First of all, she’s the mother of two children on the autism spectrum and she’s traveled extensively with both of her sons, so none of her ideas are mere conjecture. Second, she explains in great detail how she and her husband conquered each stumbling block to family fun along the way, generally suggesting more than one solution to each problem that arose. Last, she condenses all her fabulous tips into an easy-to-find guide at the end of the chapter, for those times (and in this household, there are many) where we need a condensed answer, and fast.
Quick is key around here.
The author has broken down her tips into eight easy-to-read chapters, and covers such topics as where to go, what to bring (I will be memorizing this list), and special diets. She even devotes a number of pages to handling a child who wanders, which is a particular concern to many families with children on the spectrum. My personal favorites however, and the two that convinced me that we should give this travel gig a go, are the two centering on dealing with challenging moments, and sleep.
The latter segment being my personal fave.
In her chapter about handling challenging moments, she reminded me to always have a Plan B in place (sometimes C and D are helpful too), and to remember that there will frequently be difficult moments in life, moments which (hopefully) will eventually end. Perhaps my favorite reminder for “happy travel” came at the conclusion, where the author reminds us all that we can’t control what others think about our child’s behavior, and most importantly (and happily), we will probably never see those people again.
I employed that one a lot in Justin’s early days, and it’s one maxim that continues to ring completely true.
I don’t want to give too much away (no spoiler alerts here), but I recall as I read her work the first time I kept wondering if she’d answer all of my questions, and eventually, she did. Of course there are some strategies that won’t work for either of my children, as all of our offspring are so different. The vast majority will be incredibly helpful however, with some adaptations to be expected.
Trust me, on this trip, “Traveling with your Autistic Child” will remain in my carry-on.
If you’re considering travel with one or more children on the spectrum, I highly recommend Babette Zschiegner’s book. To purchase or read more about it, please see the link below:
Best of luck to you, and happy travels!
March 21, 2012
Justin’s school bus grinds to a halt, and as I approach the stairs that will lead him back to my care I hear his low-grade “eeee”, which can either signal happiness, or distress. He lumbers down the stairs and brushes past me, ignoring my query of “Hi Justin, how was your day?”, and immediately runs to the passenger side of my car to see if his “we’re going out” bag is inside. Since we’ll be staying home today it’s not, a situation which evokes in him another torrent of “eeee” sounds, quite vehement in nature.
It’s now apparent to me that the first round of vowel sounds I heard initially were emanating from a very irritated boy.
I thank his lovely bus driver and follow Justin to our front door, which he has unceremoniously flung wide open. I hear him before I see him, my almost-nine-year-old who is sobbing his heart out on my living room couch. I am grateful that Zach is upstairs playing in his room, which buys me some time to try and figure out what my non-vocal child is trying to communicate.
Making my way over to the sofa I trip on his backpack, my visual cue to release his iPad from its confines in his new Spiderman carry-case. My fingers quickly find his communicative device and activate it, in the hopes I can cajole out of him what he wants. As I walk over to my son, iPad in hand, I recall a conversation I’d had with his teacher in the past week. She had shared an anecdote about Justin which gave me some hope that my child might one day attempt more complicated conversations than simply asking for juice, or telling his aide that two plus three equals five.
It seems that not too long ago the company that makes his coveted macaroni-and-cheese lunches saw fit to change their recipe, rendering their creation far creamier than my son would prefer. Although they changed the label slightly to indicate its new “creamy nature”, nobody noticed the difference. On this particular day Justin’s teacher served him his lunch expecting his usual reaction of unbridled enthusiasm (my boy, like his mom, loves his carbs), but Justin wanted nothing to do with his pasta.
As soon as he saw his meal minus lid he pushed it away, making his staple sounds of irritation, clearly unhappy with his designated meal. His lovely teacher of course was confused, as he’d consumed this concoction eagerly for months, and went to retrieve his iPad.
She encouraged him to “just try a bite”.
His response was, “garbage”.
My son’s teacher is not one to give up so quickly, so she tried again.
This time my son’s answer was, “trash”.
Knowing I hadn’t sent in his “back-up lunch” of peanut butter and jelly that day, she gave it one more shot, reminding him in no uncertain terms that he usually loves this meal. She shared with me that he then looked her in the eye, pushed the offending container even further away, and pushed the button for “stop it”. Twice.
My eldest child had just simultaneously disrespected his teacher and held his first conversation with her. Both of us had never been so proud.
I snap back to reality as the corner of a comforter smacks me in the face, and I reach over and free Justin’s own unhappy face, offering him what I like to call “his words in a rectangle”. I admit I don’t have a great deal of hope that this will solve anything, because although he uses the device often at school, he’s far more apt to push it away at home than employ it to get his needs met. Still, I have to try, and hope for a single mand (request) of a wish I can easily fulfill.
I wish it worked that way for my needs too.
I hand him the device, and he surprises me by not shoving it away. Instead he sits up and throws off the now offending blanket. My son presses the “I want” button, scans through a few pages at lightening speed, and presses the word “toast”. He then hits the top bar, which sings out in its slightly robotic voice “I want toast”, and stares at me. To date, this typical single request has been the entire extent of our “verbal communications”.
But today is different. Today I’m incredulous that this boy is longing for a piece of meticulously buttered whole wheat bread, particularly because the slice I offered him this morning ended up in the garbage can. I look at my son and say “Really Justin, you want toast?”, and without batting an eye he leans in towards me a bit and hits a button that says a resounding “yes!”. Then he throws his cover to the ground, stomps off to the kitchen, and takes his place at the table. He’s made things clear. It’s 4:00 in the afternoon, but my boy wants breakfast.
Considering this is the longest amount of dialogue we’ve ever had, you can damn well be certain those whole grains were quickly on the way.
I sat down next to him at the table and watched him consume his snack with gusto, all smiles now, actually giggling when I handed him a napkin. I ponder for a moment what it must be like to be approaching double digits, and not be able to summon the sounds to request a staple of the food pyramid. Pushing that thought away I smile, because he actually did get his needs met, just not in the traditional manner to which most of us are accustomed.
My boy got his toast. And his mom got to talk to him.
Our dialogue didn’t center around what he’d done in school that day. We didn’t even have a simple discussion about the weather. But it’s progress, pure and simple. It’s progress translated from school to home, which is even more important.
It was just a simple conversation between a boy and his mom.
It was hope.
February 13, 2012
I open the back door of our SUV, and instead of receiving a hug from my usually happy and active post-horseback-riding boy, I view instead a morose, still child, with tears brimming from his eyes. I release Justin from his constraints and he slides quickly out of the car, agitated, and heads toward the street. This is the opposite of his Saturday routine, where he generally runs toward the house excitedly, throwing himself across the threshold in pursuit of snacks. Today I have to block him as it looks like he’s trying for tarmac, but just at the lip where street and sidewalk meet, he stops. He puts both hands on my shoulders, gives me a look more of hurt than of anger, and buries his head in my chest.
We make it back to the house, he sliding along reluctantly as I lug boy and bag back to safety, his mother simultaneously trying to puzzle this one out. Even though my eldest can’t talk, and at times there are no icons for what he desires on his iPad, I generally (and thankfully) often comprehend his needs. As the door bangs open I watch him run a few feet into the foyer, stop dead in his tracks, and regard the archway that divides living and dining room. Jeff comes into the room, and we hear a slight sob emanate from my son.
We then witness him run behind the couch, lift up a “sedated” helium balloon held captive by its plastic bag, the one we bought for his brother’s “kid party” that we’re hoping lasts for the family fete too. He sinks onto the sofa in despair, and I whip out his communicative device, cajole him into enough of an upright position to access it, and wait. Justin runs his hands over wet eyes, gives me one last forlorn look, and hits several icons. The rather flat, atonal voice of the iPad queen blurts out “I want. My birthday is. May 12, 2003”. My husband and I look at each other as Justin buries his head once more into our accent pillows.
Justin had seen the balloon before we left. Upon returning, he noted the dearth of cars on the street which would signify his guests’ arrival. The absence of the banner strung along the width of our home, the one always heralding an impending celebration, was the last straw.
My boy thought today we’d be hosting his family birthday party.
Truth be told, numerous thoughts fight for purchase in my tired mind at that moment. I think about how this kid just used visual clues he hasn’t witnessed in a year to make an assumption about this day. I consider how he’s clearly distraught, but hasn’t gone after either of his parents to protest the fact that his birthday will not be celebrated this Saturday. Finally, I mull over how truly unpleasant the rest of our afternoon might be.
I admit, that last one gets a lot of attention.
Despite the fact that the rest of our day may be spent in what I like to call “survival mode”, I have to say, I’m impressed. He didn’t miss a trick. He communicated his needs. And as I watch him take a juice box from my husband’s hand, it even appears he’ll be rising above the insult that his parents won’t be celebrating his birthday three months early.
We always assume comprehension with Justin. But sometimes I think he understands even more than we think he does.
Soon, my boy is responding gleefully to tickles from his beloved dad, and I watch as he lurches off the couch, grasping his father’s outstretched hand. They’ll be heading upstairs to computer games only Jeff knows how to command with any aptitude whatsoever, and it seems that our “gaffe” will be forgiven. As they ascend the staircase my spouse throws me the “we dodged that one” look, and I smile, because to Justin’s credit, we did.
I think back years ago to some really dark days when my youngest was a toddler, and I wasn’t certain he’d ever communicate in any way other than screams and sobs. My mantra for that period was “he understands more than you think, he’ll get through this, together you’ll find a way”. It took a long, long time, and there were more than a few bumps in the proverbial communication road.
But finally, it does appear that my son is finding his way.
September 26, 2011
SNAP!!!! The cracking sound of Justin’s tray being disengaged from its seat stops me in mid-swig from my Coke 90, and I quickly abandon my caffeine fix to rush back to the kitchen table. I look down at his plate and take in the completely disregarded toast and bacon pieces I’d hope would constitute breakfast, and insist that he sit down once again and try to eat something. Unfortunately, me and my boy have been at the “breakfast wars” going on ten straight days now, and I’m running out of ideas.
Over the past week I’ve attempted pancakes (the smell of the first burned batch lingered for days), and French toast (met with such disdain it was as if I’d poisoned it). I would have happily made the supreme sacrifice to actually fly to France and procure croissants for him if he’d just eat SOMETHING (I know, I’m that kind of mom), but since that option’s out, the best I’ve been able to do lately is get a piece of bacon into him. I offer him a strip of cholesterol in the hopes he’ll take it, and instead am met with a forceful shove of the hand, followed by my son standing up and in no uncertain terms disposing of his plate. He’s eight now, and only a head shorter than me. Force-feeding him is no longer a reality, so I let him go.
So much for breakfast being the most important meal of the day.
There was a time five years ago when we actually had to force-feed him, which out of all the distressing issues that arise with some types of autism (and there are many), this ranks up there as one of the worst. Justin’s appetite had decreased a bit prior to me and my husband taking a vacation, but our boy has always had a rather ambivalent attitude toward food, and we didn’t think anything of it. We left for five days, and by the time we returned home he had stopped consuming absolutely everything. In only a week’s time he had begun to take on that skeletal, “starvationesque” appearance, and my mom was fairly frantic.
We all figured once his parents returned and routine was restored, Justin would resume eating. He didn’t. He in fact did not even permit a carb to pass his lips until we’d hired an eating consultant to teach us some behavioral tricks, techniques that in the end amount to fancy force-feeding. It took two days, but eventually he ceased trying to attain his perfect modeling weight, and to our delight, even consumed a vegetable.
It never happened again, but I have it on video.
I admit, I am really frustrated with him right now. This is mostly because I know that like his mother, unless he consumes something edible every few hours he’ll be in a bear of a mood, and I don’t like to send him off to school this way. He was up at 5:30 this morning so we have some time to kill, and as he plays the same scene from Despicable Me over and over, I search relentlessly through the fridge and pantry to come up with an alternative. Nothing jumps out at me (this kid even rejected Pop-tarts, which made my husband wonder if he was really his), until my eyes light upon an egg carton, one I’m justifiably afraid might have been there since the last presidential administration.
Thankfully, it turns out to be democratic dairy.
I know my chances of getting him to eat an egg (it’s a textural thing) are about as great as having a child on the spectrum, but since we all know how that turned out chez McCafferty, I figure it’s worth a try. I recall somewhere in the deep recesses of my brain that he’s become a fan of one of the Tastefully Simple spices I use when I pretend to cook, and I decide it couldn’t hurt to try to bribe him with Garlic-Garlic. I whip up two cylindrical orbs, lead a confused boy back to his seat, and present him with a new meal, fork in tow.
Damned if he doesn’t eat every crumb, with the added bonus of independently employing a utensil.
I’m not sure which is more shocking- that he’s actually eating breakfast, using the same fork he’s rejected for six years, or wolfing down a meal his mother herself concocted. At this moment, I admit, I really don’t care. Justin finishes quickly, gives me a smile and quick kiss so full of garlic I know the vampires will stay away, and happily escorts his empty plate back to the sink. I reward him with the hugs, kisses and praise I thank the entire universe that he’s always craved, and quickly start administering the twelve thousand supplements we have him take first thing in the morning.
I savor this victory, as for years around here that word was an elusive guest.
I also remind myself that I have to keep trying new things with him, even if every instinct in my body says the foreign intrusion will be rejected. Over the past few months I’ve seen him spontaneously request toys on his iPad, respond to a game of “chase” with Zachary, and once (albeit mistakenly) consume a piece of fruit and keep it down. Granted, these are all small accomplishments, perhaps not even recognized (except for the fruit consumption) in most typical homes. But here, these milestones are huge, and I want to make certain to notice, and to appreciate, every single one.
And as I catalogue yet one more battle won in the war for a happy, safe, and productive boy, I feel my stomach rumble, head toward the fridge, and remind myself that my pre-dawn Garlic-Garlic idea was pretty appetizing after all.