June 28, 2011
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.
April 13, 2011
My mom likes to send me online articles related to autism, and due to her diligence I recently read a piece entitled “iPad Not a Miracle for Children with Autism” (which, ironically, I perused after I had just posted a blog entry about my son’s use of the device, entitled “It’s a Miracle”). In it, the author claims that the device itself is not worthy of Vatican anointing, but rather, “the miracle there, as it always has been, is the parents and professionals who work with children with autism.”
Of course, he’s right.
I read through the entire article, then skimmed through the commentary (which with these kind of pieces, is often as interesting, if not more interesting, than the work itself), and reminded myself once again how imperative it is that we facilitate Justin’s acquisition of this device. He’s already employing it at home far more practically than he did his former augmentative machine, initially requiring only the slightest of physical prompts to make his requests with it, prompts that have now been downgraded to my voice only. Justin’s not debating scripture with me or telling me which American Idol contestant got robbed, but slowly, incrementally, he’s incorporating more dialogue into his daily routine. It’s still not a spontaneous event for him. It may never be.
And I have to accept this.
When I was sifting through the responses to the article however, I came upon one mother who described what the device had meant to her son, now almost seven, a child the same age as Justin is now. She described his severe apraxia and limited communication skills, and how over the course of the past year the technology had diminished some of those challenges for him. He was now manding for preferred activities, actions, and even specifying which rides he preferred at Disney World. Social questions were being spontaneously implemented, even down to requesting a particular restaurant within the confines of a mall they had recently frequented. In short, with the touch of a fingertip, the world had become a locale far more broad for her child.
And I still have no idea if this tool will widen Justin’s horizons to a similar degree, ever.
I will say however, that when I watch him use the iPad, I’m seeing my son captivated by something other than food, singing plush toys, or DVD players for the first time in almost eight years. Due to his intelligence and fairly tender age, I will continue to indulge in the hope that this device may be the vehicle through which we communicate better with one another, and far more importantly, the one through which he can get his needs met in an increasingly complex world. I’ve never given up on that dream, and I never will as long as he’s breathing. For years now his progress in this area (outside of academics) has remained fairly static, despite speech therapy, the diligence of his teachers, and his maniacal mother. I’ve learned to redirect my expectations of progress into other areas of development, and they’ve mostly been fulfilled. Despite my desire for him to converse, I consider us to be fortunate in this regard.
But this slender, chic, rectangle has at the very least returned hope to this practical and pragmatic woman, hope that my son, in his own way, might one day “talk”. And if nothing else, I consider that hope to be my miracle.
June 9, 2010
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.
April 26, 2010
I almost missed it, Justin’s carefully constructed art project sequestered away in the folds of his backpack, nestled among his library book, communicative device, and shoes he shunned earlier that day in school. When I noticed his creation I gently freed it from its constraints, and disentangled the lovely necklace my oldest child had made, I assume, in art class. On a whim I slung it over my head, and felt the weight of rotini, packing peanuts, and brightly colored squares bound in communion by a bright red lanyard soon resting lightly on my clavicles. I called my son’s name to remind him of our impending trip to the bathroom, and as he rounded the corner he glanced at me, kept moving, then stopped dead in his tracks. He saw the necklace, registered I was wearing it, and came bounding over to me. He gently fingered the purple, orange and yellow rhombuses so discreetly positioned on the yarn, looked into my eyes, and smiled. He didn’t require spoken language to convey his pleasure, his contentedness that his mommy admired his present enough to wear it. I hugged him tightly and thanked him for my gift, but words weren’t required to communicate my appreciation either.
We have many of these brief interchanges, our version of conversing, of connecting with one another. They are more frequent now, carry with them more depth in their meaning, more weight in the coveted glances with which he rewards me. Even six months ago I don’t believe he would have cared about my delight in noticing his necklace, nor would he perhaps have acknowledged I was even wearing it.
When my oldest child was first diagnosed with a major neurological disorder I read everything I could about autism, feeling if I could just understand its origins, perhaps I could banish it with my conviction, my relentlessness, my love. I recall learning that the disorder is thought to have several causes, some involving a disconnect between the slender neurons of the brain, some involving the inadequate pruning of the white matter so integral to brain function itself. I also remember reading many parents’ impassioned writing that autism is like an onion- that if enough undesirable layers are peeled away, we will eventually locate the veritable, healthy core of a child.
For Justin, I feel his autism is more reminiscent of this necklace; that his deficits and strengths are interwoven, irrevocably enmeshed with his true self. He stands in front of me admiring what he has made, and touches the components gently. His fingers first brush against cylindrical pasta pieces representing his synapses, then the porous styrofoam reminiscent of his potentially voluminous white matter, all separated, interrupted, by brightly colored squares. He touches the latter gingerly, and rotates them gently around my neck. I register each disconnect as it passes by; the perseveration, the impulsivity, the lack of spoken word, even the aggression it took so many years to control, that I worry still lurks somewhere in his psyche. I bear witness to them all, those hallmarks of my son’s autism, those uninvited, and permanent guests.
But I also pay homage to the thread, the strand of strings that woven together are much stronger than if they stood alone, the composite that permits my son’s offering to be a comprehensive whole rather than an assortment of paper, foam and food. His affectionate nature and loyalty, even his stubbornness, are bound together in our love for one another, in my relentless pursuit of his happiness. These elements weave together though all of the difficult times, the challenges autism will present to him, and to me, throughout his lifespan.
He ceases to spin my prize, finally content with its placement upon his mother’s shoulders. I am awarded one last glance, then he is off to other pursuits. I smile, and watch him go.