September 23, 2013

Chaos and Clarity

Posted in AMT's Faves, Life's Little Moments, My Take on Autism tagged , , , , , at 11:02 am by autismmommytherapist

Summer 2013 Part 2 083“Are we there yet?” my smallest son whines as my family trudges through the extensive Great Adventure parking lot, and although his tone is annoying I have to smile, because I can clearly remember peppering my mom with that same query in this very parking lot about a hundred years ago. “Soon honey, soon” I say, and drop Justin’s hand momentarily so that Jeff and I can swing Zach and thereby distract him.

We give him a few whirls, then our tired middle-aged arms give out, and we tell him he has to walk the rest of the way. I reach out for Justin’s hand once more, then realize he is gripping my arm as he moves in front of me, stopping me dead in my tracks. He gifts me his intense gaze, then he tries to talk.

My ten-year-old son attempts to speak an entire sentence.

My heart pounds to the staccato of his syllables, consonants like “b” and “m” punctuating the air around us. I have no idea what he’s saying, me, who can divine what DVD he wants when he hands me a book filled with hundreds, me who can discern what snack he desires at a venue prior to his pointing for it, me whose gut tells her which bedtime story he’ll choose every night before slumber.

He grips my arm tightly, searches my eyes as his lips form the sounds, pronouncing them with an almost feral intensity. I think I hear an “I” and an “l” in there somewhere, and given that I definitively heard an “m” I go out on a limb and respond “Justin, I love you too.” He responds with the faintest of grins, grabs my hand tightly, and resumes his loping gait toward our waiting car.

My husband and I lock eyes. We are momentarily stunned. I struggle to hold back tears.

This isn’t the first time we’ve had spontaneous speech. There has been an elusive “mama” or “more” thrown our way on occasion. But the lion’s share of Justin’s language has been in response to a question put to him regarding a concrete concept, such as a snack desired, or the choice of a destination.

We’ve also had some success with a repertoire of repeated words out of context, a litany of language we require he attempt or give us some approximation thereof, mostly so he doesn’t lose what he’s worked so hard to acquire. The latter is in no way “typical” conversation, but it is the primary way in which we elicit words from him. What just happened in the parking lot is different. It’s spontaneous. It’s purposeful.

It simultaneously renders me elated, and breaks my heart.

It’s the earnestness that gets me, that elusive thread so pervasive in my son which propels me to work so hard for him, to “get” what he wants. In that moment he wanted to convey something sacred to him, and all I can do is hope his momma got it right. I resume our trajectory toward our SUV and glance at my spouse, who says “he really tried that time”, and I nod in response.

The truth is I mostly relinquished my longing for words a while back, replaced it with the desire for any form of communication which would work for my son. We’ve had some success with the iPad and a program called Proloquo2go, but he predominantly employs it at school with his academics, is more reluctant to make the effort at home or in the community. Despite his hit-or-miss usage in the house I’m so grateful he has any means with which to convey his needs. I continue to hope he’ll one day type his wants, and dare I hope, his thoughts, as he matures and progresses in his education.

And yet I know a part of me will never completely give up on my desire to hear his conventional speech. While I’ve locked that dream away, put it on a shelf far out of reach, I remind myself it’s okay to dust it off occasionally and revisit.

Because with autism, you just never know.

My eldest son sights our car and increases his pace, the “e” sound surrounding us in his joy, as he knows both rest and juice await him. I realize that the entire episode lasted less than thirty seconds, that my youngest child is completely oblivious to what transpired. I know that it might happen again. I acknowledge to my fragile heart that it might not.

I remind myself that this child does not require spoken speech to tell me he loves me.

Jeff and I load children and paraphernalia in our waiting chariot, and I have to smile at the yin and yang of it all. This is how things go in our family. There is progress made, and progress lost. There is elation at skills learned, and sadness at such profound struggles. There is chaos, and there is clarity. There is autism.

And at this moment there are two urgent requests for juice boxes, and my husband complies as I put the car in drive and head to our next destination, the journey always challenging, but compelling in its beauty and its breadth.

June 28, 2011

How Do You Really Feel?

Posted in Life's Little Moments, My Take on Autism tagged , , , , at 8:26 pm by autismmommytherapist

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.

March 25, 2011

Happy Birthday to Me

Posted in AMT's Faves, Life's Little Moments tagged , , , , , at 9:11 am by autismmommytherapist

“Where are your presents, Mommy?” my four-year-old inquires with breathless anticipation, because he’s been waiting for this moment ALL DAY, and he’d better get his fix. It’s my forty-fourth birthday (yup, I’m well into the mid-life years, out and proud), and my youngest knows this means gifts will be served to me after a meal I thankfully did not make, and pre-consumption of the deliciously rich chocolate cake I mercifully did not attempt to bake myself either. Birthdays, (particularly my own, a tradition since childhood), are a month-long celebration in this household, and since I’ve been discussing mine for the better part of two weeks, Zach is excited by all the hype. He knows his father purchased “thanks for being born” accoutrement both for he and Justin to bestow upon me, and for my husband to shower upon me as well, and he can’t wait until the big hurrah.

By the look on Zach’s face, I’m hoping his father did a REALLY good job shopping this year.

In no time at all our dinners are consumed (Justin heartily prefers to pick from my plate, and although I’m happy to share, if I want a full meal I need to eat fast), gifts and cards opened and savored (Jeff came through), envelopes and decimated scraps of brightly festive paper quickly creating a faux carpet around us. It’s time for the highly anticipated denouement of the evening, the accapella tune that my youngest is known to sing around the house in hopes it will usher in his own day of birth that much sooner. Zach is happily immersed in all of the pomp and ceremony, from assisting my husband in procuring our lone candle which has been relegated to the back of a cluttered drawer since my last holy celebration, to begging his Daddy to light this illuminata (said request was adamantly thwarted).

We are moments from igniting our two-inch torch when the synapses in my brain thankfully kick in, and I remember that Justin’s school has sent home his new iPad today, customized through the diligent work of his speech teachers solely for him. He grinned at me when I freed the slight black square from where it was carefully nestled in my son’s backpack, was gleeful when I turned it on and he requested potty, snack, and juice in rapid succession. I was particularly delighted with myself both for remembering how to turn it on, and for being able to locate Justin’s most precious app, Proloquo2go.

As my son proceeded through his post-school pee, I quickly surfed through the myriad screens his dedicated staff members had contrived for him. I reminded myself that his asking for specific activities, his ability to express emotions, hell, his desire to receive a hug, no longer required the complicated machinations of his prior augmentative device. He could simply touch a screen, deftly maneuver the tips of his fingers over a myriad of buttons, and allow them to speak for him.

And because of this technology, during the traditional rite of passage most families engage in automatically, this year my eldest boy could finally wish me a “happy birthday” too.

I raced to the family room for the machine, activated it, and searched for the “holiday” button I was certain existed within the multitude of lettered grids. After a false start or two (I’m sure Justin would have found it immediately) I located it, pressed down upon the cool square promising celebration, and was rewarded with a child’s voice exclaiming the words to me. I walked over to my eldest, brimming with anticipation to show him.

I knelt down, and gently turned his face toward mine so I could garner his full attention. “It’s Mommy’s birthday, Justin”, I said quietly, “and you can participate in the song this year just by pushing the ‘Happy Birthday’ button right here.”  He smiled at me sweetly as I made certain he’d seen the icon, and I reluctantly disengaged my fingers from his face, not sure how much he’d comprehended of what I’d just shared. My husband slid over and hovered behind him, waiting to gently prompt him if necessary. As I dimmed the lights, two voices, one in particular for which I am forever grateful, entwined in tune to sing to me. At the end of the last chorus, the crescendo of “dear Mommy” distinctly relegated to the past, my eldest pushed a button with a smile engulfing his entire face, and participated fully in our first all-family birthday song.

And as I huffed and I puffed for dramatic effect for my youngest who appreciates the effort, our candle’s tiny flame was extinguished, wishes sailing out to what for this family has been lately a far gentler, and far more benevolent, universe. In keeping with tradition I won’t tell you what those wishes were, although I wouldn’t be surprised if you guessed. I can tell you for certain, in that specific moment, that one of them had already come true.

Happy Birthday to me.

March 13, 2011

It’s a Miracle

Posted in My Take on Autism tagged , , , , , at 6:51 am by autismmommytherapist

This morning as I checked my email I noticed a new Schafer Autism Report was out, with the timely title “Is the iPad a ‘Miracle Device’ for Autism?” prominent in my inbox. I mention the title is timely because I just spent an afternoon at my son’s school getting acquainted with his new iPad, which has been fitted with “Proloquo2go”, or as I like to call it, the “miracle app”. Although every time that three letter abbreviation is mentioned I am compelled to think of food, I managed to focus during the ninety minutes Justin’s teacher and speech instructors introduced me and my mother to his new augmentative device (yes, I was proud of myself). It is, in fact, a miraculous contraption. As I navigated my way through the speech teacher’s carefully constructed folders (after making a mental note to make her show me how to turn the device on before the session concluded), I admit I was elated with the promise it held, the opportunities spread wide open for my bright boy.

Now I just have to stop perseverating on my fears of breaking the thing.

Justin has truly outgrown his former communicative device, the Springboard, which has since died an inelegant death after taking an impromptu swan dive during snack time at school. Fortunately, this dearth in communication lasted only a few days for my son, as due to the diligence of his school staff this new Apple contraption was almost ready for his use. For ninety minutes yesterday my mom and I were treated to a tour of its properties, with the two of us making a few suggestions here and there, while the technology wiz before us did the tweaking (you know it wasn’t me). Mid-way through the tour we watched breathlessly as a “button” was pushed which displayed the alphabet, its symbols revealed to us in all of its small and large-lettered glory. I sat in wonder as I realized this device, unlike his last one, is capable of “speaking” his wishes to the world, rather than simply spelling each word out loud.

Oh please, dear universe, I’ve let go of my dream of reclaiming my pre-birth semi-flat stomach for all eternity. Let’s permit this particular miracle to come to pass.

I’m excited for the other options on this program as well, the opportunity for Justin to reveal his feelings to us with the touch of his fingertip, the chance to “say” ‘Happy Birthday’ to his little brother. Hell, the staff even managed to create a page that diligently lists every Eric Carle book ever created, and since we possess each title in its now tattered and bedraggled form, Justin can even fulfill his literary needs without rearranging every bookcase in the house. I’m hoping that with a multitude of options laid out in colorful array before him, that maybe he’ll even begin to request more interesting leisure activities than his staple DVDs and plush toys.  Perhaps one day, he’ll demand an activity that would necessitate participation by his entire family.

Bowling, anyone?

I admit, as we perused the creative wonders of minds far more technologically savvy than mine (which is clearly not even close to giving the geniuses at Apple their due), I am completely consumed by one aspect of the device, the one that would simply open up the world to him. The truth is, my son doesn’t often communicate his wants to us or instigate conversation, has in fact primarily used his augmentative devices for academics and basic needs. As he’s grown more independent he’s mostly employed the technology for the former, which has been a bittersweet outcome for me. While I revel in his ability to meet his own desires, his newfound competence has precluded his wish to initiate any kind of dialogue with us. In the last year, his cumbersome device has often been relegated to the back corner of its table, left alone and ignored, rendered mute in its abandonment.

Today however, I’m allowing hope to creep back in once again. Perhaps the allure of these carefully constructed screens will elicit this desire to reach out to us, to commence any kind of conversation that transcends mere need. I am permitting the sometimes elusive specter of hope to make its return because I don’t believe I’ll hear my boy’s authentic voice during my lifetime. Despite his fairly tender age, I am convinced that the severe apraxia that so plagues him will effectively render his vocal cords mute forever, save for the plethora of vowel sounds that punctuate our days. I’ve accepted this fate for him and our family, have relegated it to the back of my mind, let the sadness of the situation go. As my grandma was fond of saying, “it is what it is”. To dwell there is not productive for anyone.

But maybe, just maybe, there are some miracles left in the universe. Perhaps one day, with the use of this wonderful device, me and my boy will simply have ourselves a little chat.