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.

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8 Comments »

  1. Wow Kim! Communicating “I feel frustrated” is HUGE!

  2. Misifusa said,

    Wow…just wow…I can’t wait to hear that he tells you again how he feels. So happy for you all. xo

  3. Mom said,

    It was indeed an amazing moment. Brings tears to my eyes every time I think of it. So glad that I was there for that special moment in time.

  4. Kathy said,

    That is amazing, Kim. Let’s hope for more!


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