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.

June 9, 2010

Talk Amongst Yourselves

Posted in My Take on Autism tagged , , , , , , , , , , at 9:14 am by autismmommytherapist

My oldest son is now seven.  He has never spoken a completely intelligible word.

There have been approximations, attempts at articulation that his father, mother, speech therapists, and sometimes his little brother have understood. “Mmm” for mama, “heb” for help, “ob” for open have all graced our presence, particularly in the last six months. His apraxia, the disconnect between his brain and the muscles required for speech, is strong with him. But for the first time in his life I am watching him strain for vocalizations, feel his fingers on my mouth and his eyes on my face as he struggles to imitate on demand, but never to initiate on his own. It is both thrilling and heartbreaking to see him try, to comprehend that he actually wants to talk now, but perhaps will never be able to coerce the sounds he makes into the cohesive whole of an entire word. I imagine he is frustrated by this inability to converse. I am not even certain of that.

Justin was diagnosed with pervasive developmental disorder at the tender age of seventeen months, which was particularly early back in 2004. His father, grandmother, therapists and I quickly immersed him in sign language in order to offer him a way to get his needs met without a tantrum, and to afford him the opportunity to more fully connect with the world. We utilized this approach for the better part of a year, contriving hundreds of trials daily in which we cajoled him into asking for a preferred toy, food item, or book to be read. Sign language was his chosen methodology of communication for well over a year, but despite his obvious intelligence, after fifteen months he had really only mastered half a dozen signs.

When we moved to New Jersey we were fortunate enough to receive the services of the Douglass Developmental Disabilities Center, and the excellent practitioners of my newly formed “team Justin” quickly indicated that sign wasn’t working for my son. They believed we should try PECS, a method of language using pictures that is far more visual in its interpretation, and without the prerequisite of good motor imitation skills integral for success in sign. I initially rejected the suggestion, because studies at the time had indicated that more children who signed progressed into vocal speech than children who employed other methodologies of communication. I resisted heartily, and almost made a terrible mistake because I forgot to utilize one of my strengths- to look at the big picture through the lens of an educator, not a mother.

For years in the classroom my co-workers and I had encouraged different modalities of learning, whether the child came with an IEP or a 504 plan, or just required a diverse way in which to acquire knowledge. It was not unusual for teachers at my school to encourage a student to memorize information for a test in the form of a song, to permit them to walk around the classroom to facilitate knowledge acquisition, or even to allow them to respond orally to a quiz if the written word was too daunting to them. We weren’t heroes. It was just part of our job.

I forgot this big picture approach with Justin for a time, because I was too emotionally invested in what I wanted for him, which was the ability to form the spoken word, to convey thoughts, desires, and initiate conversation. I almost forgot to take into account his strengths, which were technology and visual acuity, and acknowledge his weaknesses, imitation and gross motor coordination, both prerequisites for sign language. I also almost forgot that just because I want him to talk, doesn’t mean he will be able to do so. I can provide every opportunity for him, entrench him in multiple chances daily for understandable utterances, but in the end, whether or not he speaks is up to his ability and his motivation, as are so many other skills I’d like him to attain. I forgot this cardinal rule of teaching, and almost squandered the opportunity for even the most rudimentary communication skills for my son.

Justin soon mastered the PECS program and has since moved on to a more complicated augmentative device, the Springboard, which he uses in conjunction with attempted vocalizations both to request desired items, and to respond in academic situations. He is starting to type simple words on the computer now, employing a simpler version of the “hunt and peck” technique my husband still utilizes to this day. Justin has a typing repertoire of almost twenty words now, with new ones in acquisition daily. It is exciting to watch, and thrilling to witness his pride when the printer spits out his accomplishments so that he has tangible contact with his words.

I temper this success however, as I do his some of his other accomplishments, because I must remind myself that language and communication are two different entities, and the former does not necessarily blossom into actual conversation. It took a long time for me to understand that just because my autistic child was bright and might someday have language, he might not have communication. There are a number of children on the spectrum who are pros at scripted monologues, veritable geniuses at enumerating the myriad characters of Disneyworld, the Island of Sodor, or the Wiggles. They have vocabulary, excellent articulation, perfect diction. They speak. They are not communicating in any utilitarian fashion.

I remind myself of this as I watch him struggle, view his attempts to place his tongue in the correct position for a coveted consonant, or elongate his lips for an elusive vowel. I encourage myself to think “out of the box” about language in general, because this particular child may just not need to connect with people the way that his mother does. His rudimentary successes may lead to more meaningful dialogue one day, or they may not.

What matters most is that he does get his needs met, and no longer feels it necessary to cry, pinch, or stomp his requirements to get them realized. He connects. He is happy. And while I know I will always wish for the trappings of conventional speech, even the mere desire of it from him, perhaps in the end we convey more to one another in our increasingly elongated eye contact than we ever would have with the spoken word.

And I can live with that.