January 26, 2011

Imagine

Posted in Life's Little Moments tagged , , , , , , , , at 10:26 am by autismmommytherapist

“Put the dragon song on again Mom!” Zach yells as he rounds the corner and barrels into me, face flushed from the exertion of chasing his middle-aged mother around the house. I grab him around the waist and haul him upside down (an act I have the sneaking suspicion I will have to forego in the coming year or risk the need for physical therapy), briefly tickle him, and release him laughing to our welcoming couch. I know he’s referring to “Puff the Magic Dragon”, because we’ve heard it at least a thousand times recently, once we both discovered the book I’d bought a year ago had an accompanying CD “hidden” on the last page. I’m glad we have the written word as companion to the songs, as this experience would be totally depressing without that last illustration of Puff making a new friend. Over the last few days I’ve wondered if years ago I’d had the book along with the record, or if I had completely glossed over little Jackie Paper’s defection with the cruel indifference of childhood. Without this last page, I would now find this story’s conclusion as devastating as the one from Toy Story Three.

We all know how well I fared with THAT ending.

I’ve discovered once again how to use our ridiculously intricate stereo system (in my defense there are multiple components, as clearly one should only ever listen to Loverboy on vinyl), and I quickly slip in the CD and crank the volume as loudly as possible without alarming the neighbors. Zach turns to me, shoves Buzz, Woody, and “Baby Jessie” into my arms, and commands me to dance with them, as he grabs the fake baby he’s adopted and twirls around the room after me. This remains entertaining for approximately forty-seven seconds, after which he drops his faux infant on the floor and orders me to turn off the music, remembering, through his bossiness, to say “please”. I comply, turn to him, and say “what are we doing now, sweetie?”, and he looks up at me as he steps on his abandoned child’s face and says “tell me the story of Goodnight Coconut Pirate, Mom”.

Sure hon. It’s on the tip of my tongue.

I scramble around in my brain for the creativity I used to possess, that font of originality that seems to have disappeared along with my ability to remember where I put my keys, or how many carbs I’ve consumed in one day. He’s on a big pirate kick lately, and I’m certain the recent literary references to those swashbuckling buccaneers has triggered this need for a tale about them, but I’m not quite certain where the coconut part comes in. As it turns out, my husband is deathly allergic to them. Perhaps Zach is conjuring this up from the conversation his father and I had recently, the one where my spouse politely inquired if I was trying to kill him after he saw my often-ignored recipe book open to the page for coconut shrimp. Jeff and I are still adjusting to the fact we have to watch what we say around this particular child, as this one can actually repeat our conversations, apparently verbatim.

Yet another example of our fine parenting skills.

I scooch down onto the carpet with my back against the couch, gather the Toy Story posse around me, and throw a blanket around us to buy me some time. I figure if my rendition of GCP includes a sword fight, a tough lady pirate (no damsels in distress in this house), and an ending which includes grandma brownies and juice for the marauding invaders, we’ll be fine. I’ll just have to jazz it up a bit with some of my “special voices”, and make sure to keep the action going. Hey, he’s three. Stories don’t require the layered plotlines of a Lost episode (I know, another reference, but I’m still in mourning, bear with me).

I begin with my best “crazy pirate voice” (Disney will be knocking at my door any day now), and commence a captivating tale about a pirate who in a stunning coincidence has the same name as my youngest son, when Zach shoots up from his “snuggle position” and interrupts me. “Mom, and then the pirate Zachary rescues Justin from the bad pirates, and Goodnight Coconut pirate and his friends  go home. The end!”  I smile at his enthusiasm, ready to jump in with a new episode, but my son beats me to it. For the next five minutes he regales me with several different variations on a theme, all with the central character of our hero, “CP”, victorious in the end, with every adaptation including a variety of settings, dialogue, and characters. Granted, Coconut Pirate ends up in time out quite frequently, and the vast majority of his conversations end with one or another of the participants apologizing, but for the most part Zach does not infuse his life experiences within the chapters. They are completely original creations, totally unscripted from other stories.

He is using his imagination.

Over the past year-and-a-half the return of his language skills has been a source of constant wonderment to us (I’ve often said he should wear a sign on his chest stating “results not typical”), and his play skills have also kept up with his language acquisition. For the most part however, the skits he puts on with his toys, the scenarios he enacts with his creatures and figurines, have been extracted wholly from scenes he’s watched or had read to him dozens of times, his favored segments from Thomas the Train, Cars, or the Toy Story trilogy. I’ve been through them so many times I know exactly what to do and say now, would not dare to deviate from the appointed script, know I’ll be chastised if I do. “No Mommy, he doesn’t SAY THAT!” is a frequent refrain here, as I’ve tried desperately to infuse a bit of life into the same old story just to save my sanity. Zach hasn’t wanted me to orchestrate anything new, has actually been upset when I’ve tried. There have been no points for creativity in this house.

Until today.

Eventually he tires of this new activity and wants me to read to him from “real books” again, and accompanies this request with a demand for juice and pretzels. I happily rise to placate him, mind spinning as I question whether that ancient tape recorder of mine still works, wondering if I can get him to repeat the last ten minutes another day so we can write these stories down, give them a permanent life of their own.

Hell, he’ll probably be published before I am.

I return with snack and liquids in tow, and as we sink into one another, close to our pile of beloved books, I tell him how proud I am of him. I tell him that we should write these stories down, that he’s an author now, just like the people whose names are written on the covers of his favorite tales. I remind him that just like books allow us to travel in our minds, a fact for which I am eternally grateful now that I’m generally restricted to the four walls of our house, writing enables us to make voyages as well, to set foot in places we’ve never seen, enjoy experiences we thought we’d never have. He smiles up at me, used to my ramblings, opens up The Grouchy Ladybug and says with a slight air of impatience “Just read Mom”. Spell broken, but the moment remains. My child has spun me a brand new story.

My son used his imagination today.

January 9, 2011

After Care

Posted in My Take on Autism tagged , , , at 10:29 am by autismmommytherapist

It’s late afternoon on a Tuesday, and I’m in hiding at the entrance to an elementary school, peeking through the mesh window of the front door, quite anxious not to be seen from the outside. Trust me, it’s not as sinister as it sounds, this lurking behind locked doors. I’m not at risk for expulsion, as any number of people at this school remember me from the last few years, since this was the site of Justin’s tenure in his own district’s public school system. In an effort to provide my eldest child with some interaction with neurotypical peers, interaction he won’t receive at his private school placement,  I’ve enrolled him in his former base school’s after-care program, and I need to be here on his first day to make certain everything runs smoothly. I’m hopeful that with the combined enthusiasm of the two lovely young people who run the program as well as the wisdom of his seasoned babysitter, Justin might actually get something out of this experience.

Call me crazy, but I’m hoping my son might actually have a good time.

I’ve arrived here ridiculously early as usual, and not only have I had the opportunity to reacquaint myself with the lovely secretaries who were so kind to me as I badgered them with questions over the years, I’ve also had the time to use the little girl’s room, an added bonus. Justin’s bus drivers and our school district have kindly agreed to transport him here twice a week after school, which means I’ll only have to schlep Zach here once daily to do a pick-up, a kindness for which I am truly grateful. I shift position slightly and my knee grazes something sharp at the intersection of floor and door, and I remind myself to stop my mind from wandering and concentrate on registering his bus’s arrival. Within a few minutes, enough time for my foot to fall asleep but not enough time for the subsequent hobbling to fully incapacitate me, his truncated yellow chariot arrives.

Ladies and gentlemen, it’s showtime.

I’m actually feeling fairly positive about the outcome of this afternoon, as I’m hoping Justin will be happy to reacclimate himself to his old haunt, and I’ve prepared him as much as its possible to prep a non-verbal child for anything. I’ve brought him to the program to check it out and meet the people running it, and I’ve talked to him incessantly about his new Tuesday/Friday jaunt. We’ve made our own version of “social stories”, where I’ve taken photos of him at this location and incorporated sentences explaining what he’ll be doing while at the program. His former speech therapist, who was exceptional, has offered to visit him periodically, so he will have continued contact with his past. He likes kids, loved his buddy program that afforded him a half hour with older, neurotypical peers on a daily basis, and perhaps he’ll make a connection with a few of the fourth or fifth graders here as he’s done in the past. In any case, that’s what I’m hoping will occur.

I’ve ducked down for a few seconds as these thoughts race through my mind, and I quickly pop up just long enough to wave at his wonderful bus driver so she knows it’s truly okay to hand my child off to the sitter who is a stranger to her, then crouch down again so as not to be seen by my son. I’d find the entire clandestine nature of this day amusing if so much wasn’t at stake, but I admit my heart is beating out of my chest as I then scurry around the corner and stake myself firmly in the utility room. In theory it should be mere seconds until my son and his sitter round the corner to the boys’ bathroom, at which time I will make my hurried exit, but just before I reach my destination I catch a glimpse of what’s transpiring outside, and my lurching heart makes a decided break for it out of my chest.

Katherine is having trouble simply getting Justin off the bus.

I know this no longer bodes well for the outcome of this day, as it’s difficult for Justin to learn to enjoy a new activity if we can’t even get him off the form of transportation that brought him to it. I slide further into the slightly musty utility room as two women discover me and ask if they can help me with anything, and I quickly explain who I am as well as my purpose for hiding myself. I’m momentarily glad I schlepped in my purse, so I can actually prove my identity if need be. They seem satisfied with my answers, although one is eyeing me strangely, and I silently beg the universe to get her to move along so if my son ever does get off the bus he won’t spot his mommy playing spy. She somewhat reluctantly retreats (and honestly, if the situation had been reversed back in my teaching days, I’m not so sure I would have been as nice), and I’m once again able to relocate behind the massive, unwieldy door that’s seen better days.

Within moments I hear Justin’s “eeee” resonate throughout the hallway, and since it’s his main form of vocal communication I stop to measure the timbre and tone of it, and realize that he’s calmed down enough for me to allow him to attempt this venture. I wait until I hear the click of the boys’ bathroom door echo behind me, then I run out the main entrance to my waiting car. Zach’s waiting for me at home, will have awakened from his nap by now, and if I’m lucky I’ll have a whole, blissful, uninterrupted hour with him before I have to return.

Upon my arrival home, for the next twenty-four minutes I reside in “normalland”, coaxing my escape artist son to use the potty appropriately, fetching him his requisite snack of juice and pretzels, and helping him care for “Baby Jessie” from Toy Story as I slip into the role of Jessie’s father. It is a blissful interlude from worry, ending up with the two of us ensconced on our couch under the “picnic blanket”, Zach providing comfort to a doll with an upset stomach, me coaching him on how best to help her. It is so peaceful, this time together, especially after such a long stretch with both children at home, and I’m truly enjoying it (and the sitting down is an added bonus).

Then, the phone rings.

My wonderful, competent sitter has called me to come pick up my boy, the one I can hear crying plaintively in the background, the one I moved mountains for just so he could have this experience. I call up to Jeff to ask him to watch Zach for me as I go to retrieve his brother, throw on the first shoes I see, and run as fast as I can through our semi-icy driveway to my still-tepid SUV. It’s only twelve minutes to his former school, but today I seem to hit every light and slow-moving vehicle, and the journey seems endless. Eventually I make it there, park in some administrator’s spot I’m hoping has long since headed for home, and look at the expanse of windows leading to the main lobby. As I approach I can just see the top of his ridiculously adorable Russian-type hat peeking over the ledge, and as I reach to grip the handle to enter the building I see his eyes, his red-rimmed eyes, light up at the sight of me. I walk in, he throws his arms around me, buries his head in my torso, then looks up with one of his glorious, disarming smiles.

The look on his face is one of utter relief.

I wave over to the program coordinators, who are clearly remorseful that he wasn’t happy there, and I reassure him it’s not their fault, that this, along with an increasing list of things, just isn’t going to be his gig. He practically drags me to the car, joyful that we’re leaving, certainly anticipating our return home. The tears have dried on his face now, and I can chart the salty stains on his cheeks as I secure him into his harness. I then buckle myself into the front seat, and after aging another year waiting to make the left turn out of the circle we finally gain access to the main thoroughfare, one of many roads leading toward home.

Normally, I would try to find the silver (or at least the bronze) lining in this afternoon. Perhaps I’d remind myself we’ll save a nice chunk of money every month from not having him participate in this, and I acknowledge I won’t have to worry I’ll forget I have to pick him up twice a week. I won’t have to interrupt Zach’s playtime again for the sake of his brother, an occurrence which happens too frequently for my liking as it is. There are, despite my sense of defeat, some positives to his not being enrolled here.

But just for once, just this once, I’m allowing myself not to focus on these truths. I realize that I’m crying, then laugh-crying because the last time I permitted tears to flow was when my husband shared the end of Toy Story Three with me as I was washing dishes, sobbing into Zachary’s sippy-cups. I just don’t indulge myself much with emotional release these days, find it too exhausting to recover and regroup, simply easier to try to laugh things off and move on.

Not this time however. This time, I’m just letting it all out. The annoyance factor at the amount of time, and phone calls, and research that went into making this decision. The irritation of once again having my time interrupted with my youngest due to autism’s vagaries. The thought of the myriad of details waiting benignly for me tomorrow so I can begin to undue this undertaking. The irony that he has a mother who would be happy, grateful even, to take him anywhere he wants, regardless of his disability. The envy factor, in which I try not to indulge often, of other parents who can simply make this choice, sign a form, and mail a check.

The fact that everything that seems to come with this life is so, damn, hard.

All of these things come into play, and I recognize and accept them. But what’s really grabbed my still-pounding heart, what is truly the source behind these unprecedented tears is this:  I just wanted my child to find something new to amuse himself, perhaps the chance to be fawned over by a few admiring girls several hours a week, because this is the childhood he gets. This is it, and the time he has left where he’s regarded as cute and cuddly is running out . For whatever reasons, ones I am certain I won’t fathom in my lifetime, this is just one more failed attempt for my boy to have some fun.

And as I wipe those tears from my cheeks, those foreign and undesirable droplets, for the millionth time, I just want to know why.