August 18, 2016

How Far

Posted in Life's Little Moments, My Take on Autism tagged , , , at 12:56 pm by autismmommytherapist

Justin Turns Ten 020

He grabs my arm with urgency, stopping me in the middle of washing a frying pan I didn’t really want to be washing anyway. He turns my entire body with his grip, eyes intently locked with mine, all business. When he sees he has my focus I hear the telltale sucking in of air that precedes all of his speaking attempts, and I wait to hear his sounds. What comes out is unintelligible to anyone not his parents, but I know he wants his “Clifford” CD for the computer, and he wants it now.

My severely autistic son, just shy of thirteen, is choosing to use his words over his communicative device.

His desire to get his needs met through syllables is relatively new, his attempts at speech ramped up since spring break. He does use his iPad to communicate what he wants, sometimes pressing buttons to sound out his requests, on occasion typing his words to summon what he wishes for. This bypassing of communicative devices at home is new, and his father and I welcome it, as we’ve been searching for speech for him for almost twelve years.

But if I’m honest with myself although he’s made progress, particularly in the last few years, most of what he asks for is only understandable to his mom and dad. And since we won’t be around to take care of him forever, that’s a problem.

Don’t get me wrong, the sounds are thrilling. We waited years and years to hear them, eagerly anticipated him breaking his tenacious silence despite years of speech therapy both in school and in private therapy.

But I’ll share with all of you that my focus has shifted over time from wanting him to communicate through speech to simply wanting him to have a form of functional communication at all. And that’s what we’re striving for both at school and at home.

So while I welcome the words we’re also trying to get him to use his Proloquo2go, and I work on his spelling with him weekly as well. The truth is while I try to remain in the present I always have at least one toe (or usually a foot) mired strongly in the future as well, and I often think about how he’ll get his needs met after we’re gone. His father and I have an almost uncanny ability to understand what he wants, but I don’t expect his caretakers to have those superpowers. Being able to read his mind and anticipate which DVD he wants to play next will not be listed as a job requirement for his lifetime care.

So I’ll keep pushing him.

Because I want to crawl inside his mind and understand his thoughts, his feelings, his wants, all that he has stored up there that his neurotypical parents aren’t able to discern.

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Because someday we won’t be here to anticipate his wants, and he’ll need a more functional way to communicate his needs.

Because I love him to the moon and back, and want him to be his best self, to be as independent as he can be.

Because learning to take care of his own needs has become my new barometer for his success- not how many ABA trial he completes with 80% accuracy, and not how many intelligible words he emits.

Because that brave, beautiful brain has so much to share.

So his entire tribe will keep pushing him, not to his breaking point, but just to see how far he can go.

And I believe that will be very far indeed.

 

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April 14, 2014

Let’s Talk

Posted in Life's Little Moments, My Take on Autism tagged , , , , at 4:25 pm by autismmommytherapist

Justin Key

It’s almost bedtime for the boys, one of favorite times of the day (for both selfless and selfish reasons,) and Justin and I are enmeshed in one of my, and I hope his, favorite games. My not-so-little-boy is wrapped tightly in his Elmo towel, standing in front of me on his bedroom floor with a huge smile on his face. He pushes my shoulder playfully, and quickly looks up at the various framed photos that grace the top shelf of his bureau.

As is our custom I ask him to point to me, his dad, his brother, and his beloved teacher, the one whom he embraces at least a dozen times a day. He does so with glee, and I follow-up with my staple queries involving these individuals, asking him if he loves them, waiting for my usual reward of his coveted nod in the affirmative.

Tonight however, the answer is a resounding “no.”  If I didn’t know better, I’d wonder how we all fell out of favor so fast. Hell, just last night he loved us.

For me, communicating with Justin has always been a double-edged sword. Back when he was diagnosed at the tender age of seventeen months I clearly recall our pediatrician handing me a set of misprinted articles about autism, all of them pronouncing a dire verdict of what was to come. Every single one of them also included a piece describing severe deficits in language.

I can remember how I desperately tried to solicit sounds from him right after that pronouncement, clinging to the consonants I’d heard prior to his first birthday, striving to hear them once again. The few word approximations Justin had before twelve months of age were long gone by the time he received the autism label, and it literally took a decade before I began to hear their echoes, like lost friends returning to call upon us. Now Justin has about a dozen words on command, and is using “hi” and “bye” appropriately in context.

The words are thrilling to hear, but I admit not what I longed for a decade ago in my frenzied attempts to elicit language from my son.

The truth is however that even without the spoken word Justin and I have always seemed to comprehend one another. When he was younger he first communicated his wants and needs using PECS (the Picture Exchange Communication System). When his therapists felt he’d outgrown that method we moved him onto Proloquo2go, which he uses on his iPad predominantly for his academics at school. These devices helped us in ascertaining what he wants, but with his burgeoning maturity he often is able to meet his own needs without resorting to using technology.

Despite the fact I’d like to see him use his iPad more, that independence is a beautiful thing.

I’m thrilled he’s able to do so much more for himself, independence being an area of his development I focus on heavily, and I’m equally ecstatic with his leaps in communication. I’m grateful, as I try to be with all areas of his progress, no matter how small.

But I admit, for some reason this night especially, I still yearn for more.

He’ll be eleven soon, is solidly entrenched in his fifth grade year, the age group I taught for a dozen. I admit I want more than just the “nod,” the requests for juice, the demands for access to a toy. I long for access to the inner workings of his mind to know if he feels loved, if he truly feels accepted for who he is. I’m greedy to know if he really understands us when he responds to our “yes or no” questions.

I wish I could know his dreams.

I know even as I pen these hopes and desires that all I can do as his mother is keep encouraging him, keep working with him, and wait. I am terrible at it, but there is no other option. Perhaps, and the odds are against me, one day I’ll make progress in this area too.

I shelve my ruminations for another day, and my beloved boy looks me in the eyes and pulls me in for one of his signature kisses.

And for just a moment, it is enough.

 

 

 

March 17, 2014

Savor the Moment

Posted in AMT's Faves, Life's Little Moments, My Take on Autism tagged , , , , , , , , at 1:06 pm by autismmommytherapist

Disney and Halloween 2013 184

I hear Justin’s yellow chariot about a block before it reaches my driveway, and make a mental note to tell his bus driver to check the brakes.  It’s freezing outside (as usual this winter), so I wrap my warm woolen scarf tightly around my neck before I shove Cosmo into my coat pocket and step out of the warm cocoon of my car.  I navigate pockets of the relentless ice plaguing my driveway and follow the carefully carved path my husband has created for us, and I hear my son well before the bus stops.

Within moments he is greeting me at the top of the steps with his aide close behind.  As usual I thank his chauffeurs and make room for him to descend, grabbing his backpack as he moves from towering over me to mere inches from my diminutive height.  I smile and say “Hi Justin” as I have done for years, but with perhaps more emphasis as I am trying to generalize a reciprocal greeting his speech therapist is attempting to teach him at school.

I anticipate a sofly emitted “hi” or a mad dash for the door for his coveted soft pretzel, but today is different.  Today my severely autistic son looks me straight in the eye, and with a hint of a smile says “Hi Mommy,” then grabs my scarf and leans in to plant a big kiss right on my lips.  It is the first time he has ever put two words together for me with or without being prompted.

Too soon the moment is over, then there’s still the mad dash for those carbs.  He is so my child.

We’re starting to elicit a few words from Justin after ten long years of speech therapy, ABA rewards, and my working with him whenever possible.  Over the last few months we’ve begun to hear coveted consonants such as “t” and “p,” sounds initially evoked only within the confines of his school or therapist’s home, now reproduced on demand for me.  We’re slowly building a vocabulary me and my boy, one which even includes saying “pop” as a fill-in from his favorite Eric Carle creation.

It is thrilling to hear these words and word approximations, and I know as soon as we’ve shed shoes and scarves I’ll yell our triumph to my husband upstairs, and run to the phone to call my mom.  There will be an email chaser to his private speech therapist and to the school speech therapist who has been working so diligently on this skill, taking the time to film me greeting my son on his ipad, and carefully rewarding his attempts with my homemade chocolate chip cookies that defy my usual ineptness with all things kitchen-related.

In a few moments I’ll be besieged by requests for juice and snacks from both of my children, will find myself tripping over hats, coats and mittens as I navigate our narrow hallway.  There will be the daily homework struggle/bribe with my youngest, voluminous paperwork from their respective schools to pore over, lunchboxes to unpack.  In short, the McCafferty clan will soon be immersed in its daily organized chaos.

But I won’t allow it to happen before I take the time to savor this moment.

There have been some really difficult periods in this household.  I have two boys with autism, and both have undergone months or even years where silence ruled our world, gastrointestinal distress claimed the day, and sleep was an unreachable luxury.  We’ve also endured periods where my eldest expressed his emotions primarily through aggression, with medication, therapy, and love incapable of providing any respite.

In the past there have been weeks where I’ve been struggling to make it through the end of the hour, much less the day at hand.  Throughout these challenging times I’ve generally been able to invoke my mantra of “This too shall pass,” one of my beloved grandma’s favorite maxims that for our lives at least, seems to hold true.  Those four words have been the touchstone that have help me transcend our troubles, minister to my boys, trade frustration for an embrace.

I guess you could say those words are my personal hashtag.

We go through cycles of frustration here, but what I’m finally beginning to remember as we now rarely descend into darkness that for us, these difficulties always pass.  Thankfully, the stomach issues which plagued both boys have all but disappeared.  The all-elusive sleep I longed for both me and my sons almost always graces our presence nightly, bringing much-needed rest and respite from the day.  Through a variety of strategies, and perhaps mostly maturity, my eldest son has learned to quell his frustrations, now resorts to his iPad or even a word or two to get his needs met.

And yes, despite years where all of our queries met our son with silence, we are finally being graced with the mecca of the spoken word.

I hear my youngest bellow for “juice!” and realize my moment for contemplation is now on hold, to be shelved and savored for later.  Soon pretzels will be distributed, beverages will be poured, and the minutiae of a day away discussed.  My eldest will escape upstairs to his coveted computer, and I’ll tussle with my youngest about exchanging jeans for his karate outfit.  Our life, “normal” as we know it, will take over.

But I promise myself this before I am swept up.  I have goals for my sons, some of which like speech have seemed impossible to achieve, unattainable brass rings.  My boys constantly shatter my preconceptions of what they can achieve, resist any limitations I might unconsciously impose upon them.  They will continue to learn.  They will continue to grow. On their own paths and in their own time, progress will continue to be made.

And each and every time they achieve success, their momma must remember to savor the moment.

January 6, 2014

Tears of Joy

Posted in AMT's Faves, Life's Little Moments, My Take on Autism tagged , , , , , at 4:08 pm by autismmommytherapist

Disney and Halloween 2013 039

“Mommy, tell me a story” my six-year-old with mild autism entreats me, and in the rearview mirror I see him gift me with that grin I know so well. “Ok, who will be in it?” I reply a bit tiredly, but I’m game as he hasn’t asked me to recount one to him in a while, and I’m loathe to relinquish our mutual passion for tale-telling.

“Me, Justin, and monsters” he answers, and for some reason my mind wanders to a story I’d just told him where he vanquished the Loch Ness Monster, ultimately taming her and using the beast to fight the Dark Side.

I soon weave him a story in which his older brother with severe autism is stranded on a raft in Nessie’s lake, is terrified of being capsized by the broad arc of the serpent’s tale. At the end I tell him how grateful Justin is to him for saving his life. I also share with him how although his big brother can’t speak out loud, in the story he talks to Zach in his heart.

I tell my son his brother says “I love you Zach, you are the best little brother in the world, thank you for saving my life,” and I end with a grin. I glance in the mirror one more time and see my eldest rocking out to “Rudolph the Red-nosed Reindeer” then I swivel slightly to see if my latest fable has met with my son’s quite discriminating approval.

In the reflected light of the mirror I see my small son’s head in his hands, fingers nudging his glasses off his face, his shoulders shaking slightly as tears roll down his cheeks.

It appears my story-telling has made my own six-year-old cry.

I quickly ask him what is wrong, and after a short silence ask him if the ending made him sad. He answers that he is in fact crying tears of joy because his brother is talking to him, even if it’s in his heart. He tells me the story was a good one.

I take a deep breath and wipe my own eyes.

In my family we discuss autism all the time. Zach knows and revels in the face he has a “little bit of autism.”  He is aware that Justin quite obviously has a lot. He also knows his brother loves him, evidence of which I provide on a weekly basis. Zach is aware that Justin would never permit another child to be so physical with him, would never welcome the hugs and infrequent rough-housing Zach bestows upon his sibling as often as he can.

He is well aware that Justin’s face lights up whenever he enters the room- that even thought his big brother cannot express his joy vocally, he conveys it through his expressions and his compliance with Zach’s frequent demands. My last child has told me over and over again that he’s okay with Justin having the disorder, fine with the fact he doesn’t speak to him out loud, quite confident in the relationship they’ve formed.

Yet I wonder, for the millionth time, if he really is okay with it all.

I reassure him that while it’s alright to have tears of joy, that it’s always okay to have tears of sadness too. I tell him that I’m sometimes sad that Justin’s autism is severe, that my son who grants me a hundred kisses daily is held captive to his OCD, the rigors of which often render him miserable.

I tell him I wish Justin could have friends like he does, and I see Zach nod his head slightly in acquiescence. I share with him that I wish my first child could talk too, how it’s hard for me not to know what he’s thinking, that I’m certain a vibrant intelligence dwells beneath his almost-mute exterior. I ask Zach if he wants to talk more about Justin and he says no, that he’s okay. He then commands another tale, requests that this one include light sabers and epic battles waged. I tell him I’ll see what I can do.

It is clear the conversation is closed, at least for today. But I know I’ll revisit it many times, encourage him to share his feelings, even his disappointments. We talk a lot, me and my smallest son. Our discussions are something I never take for granted.

So I breathe deeply again, and devise a tale where he and Justin must work together to overcome great evil, each using his strengths to counteract his sibling’s weaknesses. I forge a path where together the boys benevolently rule the world, each in his own way. At the conclusion they remain connected to one another, and reign victorious over any who would threaten them, or their bond.

And as I end yet another saga for my boy, my own heart speaks out loud, wishing it to be a tale come true.

April 28, 2013

The Nod

Posted in AMT's Faves, Fun Stuff, Life's Little Moments, My Take on Autism tagged , , , , , , , , , at 10:11 am by autismmommytherapist

Easter 2013 025

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

Talk Amongst Yourselves

Posted in AMT's Faves, Fun Stuff, Life's Little Moments, My Take on Autism tagged , , , , , , , , at 9:14 am by autismmommytherapist

Justin Turns Ten 043

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

Just My Type

Posted in Fun Stuff, Life's Little Moments, My Take on Autism tagged , , , , , , , at 7:57 am by autismmommytherapist

Fall 2012 033

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

A Good Read

Posted in AMT's Faves, Life's Little Moments, My Take on Autism tagged , , , , , , at 10:57 am by autismmommytherapist

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

“Traveling with your Autistic Child”

Posted in Fun Stuff, My Take on Autism tagged , , , , , , , , , at 9:21 am by autismmommytherapist

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:

http://www.lulu.com/

Best of luck to you, and happy travels!

March 28, 2012

A Friend in Deed

Posted in Life's Little Moments, My Take on Autism tagged , , , , , at 8:35 am by autismmommytherapist

I hear “Look guys, Zachary’s home!” through my open window as I round the corner into my driveway, and I glance back in my rearview mirror to see my smallest son waving maniacally at our young neighbor. I turn off the ignition, and hear the click! of the seatbelt as it is released from its constraints. As I turn around I see my boy’s face plastered to the window, seemingly mesmerized by the tableau before him. It’s a simple picture really- just three boys, a net, and a ball, on the first afternoon to grant us the gift of spring. It’s nothing special.

Except to Zachary, it is.

I walk around to the back of the car, undo the childproof locks, and set him free. My lovely neighbor’s equally lovely son bounds over to the car and asks Zach if he’d like to play, and my son’s resounding “YES!!!” can be heard up and down the block. The other two boys who don’t know him quite as well are good sports, patient as can be with a five to seven-year age difference, which is monumental at this point in their lives. Zach is beside himself as they take turns hoping for hoop, and alternately trying to send the ball into outer space.

That was the twelve-year-old’s idea.

All too soon my neighbor’s accomplices are called to dinner, but Zach’s friend wants him to stay. My son looks at me with what I call his “pleading/exuberant” face, a countenance which cannot be denied. I realize there are tears fighting for passage from my own face, which surprises me (must be a peri-menopause thing). I tell the boys of course they can keep playing until I have to make dinner, and Zach lets out a “WHOOPEE!” that makes me smile as he charges after the ball. Then I ponder those tears for a second, and realize they’re justified.

What I’m witnessing is what I’d always wished for my boys to have for themselves.

As I write these words I realize that even had they been neurotypical, they might not have gotten along, might in fact have been at loggerheads throughout their childhoods. In my own birth family, there is a four-year divide separating me and my little brother. Between that gap, our differing genders, and his continued reluctance to participate in anything “girly”, we never truly bonded until we became adults. Even if Justin was more like Zach in nature there is no guarantee they would have gotten along, shared toys with each other, or participated in one another’s pretend play.

After being ignored dozens of times over the past few years, Zach doesn’t ask Justin to engage in his wildly constructed scenarios anymore. I feel both a sense of relief and a touch of heartbreak every time he assigns roles to his parents, and not to his sibling. Still, they have their bedtime ritual, and their shared love of movies.

As I am fond of saying, it is what it is.

I drag myself away from my thoughts so I can fully witness my son’s joy. I am struck by the thought that what is playing out before me is so effortless, so incredibly natural. At times the routines and rituals we’ve created for the boys seem so forced compared to this, the simple give-and-take of two children engaged in a childhood staple.

I watch as Zach turns down a gratuitous offer to take an extra shot because it’s not his turn”, and my heart swells with pride as he hands the ball over to his friend, albeit a bit reluctantly. It hits me that although he struggles in various areas of his life, for him this social interchange is simple. Sure, he’ll need to reign in his worship of dinosaurs a bit if he wants to keep his friends. But for the past twenty minutes he hasn’t struggled, looked to me for cues, or needed assistance in any way.

For Zach, this moment is easy.

I tell the boys to stay on the driveway so I can retrieve my phone from my car and call their father to come down from his office, as dinner needs to be made, and my five-year-old needs constant street supervision. My husband arrives just as my son breaks for the front door to retrieve his own child-sized basketball hoop for “double play”, and I laugh, because he’s never content to keep things status quo for long.

I ask Zach’s companion if he’ll wait for him and he says “sure”, happy to comply. I head for home and chicken cutlets, almost tripping over my pre-schooler as he drags worn plastic on smooth tarmac. I smile as my spouse rolls his eyes, and before I devote my thoughts to our impending meal I throw one request out to the universe at large.

May his quest for friendship always remain this simple.

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