July 29, 2011

What’s Your Point?

Posted in If You Need a Good Laugh, Life's Little Moments tagged , , , , , , , , , , , , , at 11:28 am by autismmommytherapist

I noisily slurp my deceptively delicious frozen strawberry lemonade, a new concoction from McDonald’s (who knew the golden arches could corner the market on this summer’s most fabulous non-alcoholic beverage?), and take in the scene before me. It’s a familiar seasonal tableau, as my family of four often comes here to “dine” when on a Great Adventure outing, and I think the familiarity of the routine keeps everyone peaceful and calm. Zach is ignoring the ham we brought with us in deference to his GF/CF diet, and is playing seriously with Justin’s happy meal toy. My husband is scarfing down what actually looks like a fairly edible chicken sandwich, and Justin is contentedly watching Cars on his CD player while eating the fries I’m surreptitiously stealing from him. All is right, and “normal” for us, in the kingdom.

And then, my oldest boy points.

There was a time when my heart would have leapt into my throat with joy, along with the alluring thread of hope that this common way to communicate needs was leading up to a “breakthrough” for my son, a transition from his world, to mine. When he was diagnosed with autism at seventeen months, and had barely made the switch from infancy to the realm of toddlerhood, the necessity of teaching him how to point was drummed into me over and over by the vast majority of the professionals comprising Justin’s therapy team. Again and again I would hold his tiny hand, elongate his sweet pointer finger, carefully fold the remaining four into a gentle fist, and aim. He was supposed to be demonstrating this integral skill not only to convey his needs, but in order to share something of interest to his parents, his grandma, or just his babysitter.

The latter concept was called “joint attention”, a pivotal requirement for typical development in early childhood. I shaped those five digits frequently during those first years in the hope the desire to show us anything would “catch on”, but honestly, it rarely did. I do have one such encounter relegated forever to the digital world. It is a slightly shaky few minutes of film in which I recorded Justin sitting on Jeff’s lap pointing to the vibrantly portrayed animals in Eric Carle’s The Very Hungry Caterpillar, my son laughing gleefully as my husband recited each mammal’s name no matter how many times Justin referred to said animal in a row. Soon, even the desire to engage in that game dissipated too, and my son began to rectify his needs through PECS, his Springboard, and ultimately, his iPad. He found a way to engage us in his joy as well by simply using his eyes, not his finger, to showcase his discoveries. All in all, these methods have worked for him, and for us.

But today, he is pointing. It is a gesture preceded by a downward glance of disgust at his chicken nuggets, followed by a look of undeniable longing toward my husband’s poultry selection, and capped off with a “finger chaser” in case there are any doubts as to his desires. His emotions are so unusually readable on his face that Jeff and I have to laugh, as there is no confusion as to what he desires, and I know my spouse will be heading back to that frenzied food counter momentarily to repurchase his own lunch. In good father form he breaks off a bite-size piece, and my son is eager in his acquisition, almost inhaling the slice before Jeff can change his mind. He swallows, and we watch the mere hint of a smile cross his face as he imperiously extends that pointer finger again.

And I have to laugh once more, because this interchange is just so damn “normal”.

There have been a number of these moments in the last few weeks as I’ve entertained the two kids on their summer school/camp hiatus, and they are wonderful to see. One morning, well before my other two boys surfaced from slumber, me and my eldest constructed an Elmo fire station from Legos, mommy pointing at the photo on the box, and son locating the plastic piece and constructing the building from scratch. Two evenings later, Justin grabbed my youngest as he enacted his nightly bedtime ritual of hugging his big brother goodnight, pulled both boy and book into his bed, and regarded me with a look that left no doubt they’d be receiving their bedtime story together.

Fortunately, Velveteen Rabbit was a crowd-pleaser.

To tell you the truth, I’m pretty exhausted on this “time-out” from routine, and I’m only two-thirds of the way through. But I’m glad I’m witness to these fleeting moments, happy to participate in this minute foray into typical. Justin’s truly beginning to interact more with the world, his teachers, his sibling, even strangers who grace his path. It’s not earth-shattering progress, but it makes life so much easier for us all.

And that’s a concept I’ll take with me until that glorious first day of summer school.

July 14, 2011

In Repair

Posted in AMT's Faves, If You Need a Good Cry, My Take on Autism tagged , , , , at 9:08 am by autismmommytherapist

I close the door of my eldest son’s room gently behind me, secure in the knowledge we’ve completed our nightly ritual of singing, hugs, and one last dramatic run across his bedroom by me to assure him he is loved. Justin seemed absolutely exhausted tonight, which I’m sure is due in part to his unfortunate rejection of slumber at 5:15 this morning, and also due to the fact I purposely wore this child out in our pool today so he would sleep tonight. Both his father and I can make it through one fifteen hour day with him, but two in a row is torture.

His parents know their limits.

I hear the click of the doorknob settling into its groove as I walk over to my youngest son’s room, and find him performing “transformer moves” as my fatigued spouse tries desperately to sheathe him in his summer pajamas. I selfishly want no part of this scene, so I turn and walk into the bathroom to prepare his toothbrush so we can wash away the day’s detritus. I step into the hallway, and then I hear it.

My oldest son is sobbing. Abject, soul-stripping sobs.

I yell to Jeff that Justin is crying, which isn’t exactly the most apt description of what he’s doing but it will have to suffice, and rush back into his room. He picks his head up for a few inches, then lets it fall to the pillow in despair, and I slide into the bed next to him as he sidles up to me for comfort. In an effort to console him I quickly release him from the layers in which we ensconce him for comfort, the fishy throw, the under-the-sea sheet, and the sleeping bag which serves both as cocoon and conductor of warmth in the house we keep frigid, so his mother can conquer her hormones and sleep.

My eyes adjust to the feral darkness we’ve created to elongate his slumber, and I see his tears, those salty microcosms of sadness sliding gracefully down his face. Generally when he cries, which thankfully isn’t often anymore, he buries his face into the nearest trusted adult for comfort, seeking the murmurs and sounds of solace that accompany any embrace. Tonight however, he simply stares at me, eyes locking with mine, imploring.

And I know in my heart if he could talk, he’d say “Mommy, fix it.”

Justin and I have always had a special connection, a conduit into each other’s minds that has allowed us to understand one another even without the ease of the spoken word. I can clearly remember panicking a week or so after his diagnosis when it finally hit me that he might never talk, might not even manage a form of communication intelligible to most individuals in the “typical” world. I recall wondering not only how he would ever get his needs met, but worrying that at some point the facility with which I’ve been able to understand what he requires might disappear, leaving an angry, frustrated boy in its wake. Fortunately, this scenario has never taken place. When his PECS photos, his Springboard, and even his iPad have not sufficed, in general I’ve simply known what he needed. It is a gift for which I remain eternally grateful.

Except, tonight this gift has failed him, for I have no idea why my son is heart-broken, and no idea how to make the demons disappear.

If I have to take a stab at the origin of these plaintive cries I’m guessing it’s due to the fact that we’re hovering in hiatus. He’s taken to staring at that photo of his teacher gracing his nightstand a little longer that usual these days, and perhaps he’s missing her. I show him pictures of his school frequently and perform a daily calendar countdown to reassure him of his return, but I’m never certain of how much information gets through to him, and I still can’t ask him. He could be getting ill, but I can’t question him about his tummy or his head, can only brush his skin to search for fever. I realize his despair may be linked to something as simple as the complete disruption of his coveted routine, but I can’t query him about his possible lack-of-ritual angst, can only reassure him that life will return to normal soon.

My son is eight years old, and I still can’t ask him how Mommy can make it better.

I know this will be one of those moments that rips away my elation of how much progress he’s made, and slams me mercilessly against the big picture, the truth of how vulnerable he’ll always be in our world. It’s not an orphan moment. I dwell there any time an innocent comment is made about his future, his appearance, his intellect, or his attraction to pretty girls. There will be limits to this child’s life. I’ve discovered that since he dwells predominantly in a joyous landscape that I sometimes forget these barriers, am enmeshed safely in our “new normal”, able to forget autism’s confines.

But right now, the silence that surfaces when the sobbing’s concluded is a giant hand on my shoulder spinning me around, mercilessly forcing me to face reality.

And tonight I hate it, loathe that I can’t discuss my son’s sadness, construct a plan, pinpoint his fears, and banish them. Instead, all I can present him with is the solid weight of my arms wrapped around him. I can give him the tip of my forefinger, which will trace his forehead and the bridge of his nose in a tradition that has always elicited the sanctuary of slumber, even in his most agitated form. I can offer him these things, and I will.

But tonight, for me, it’s simply not enough.

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.