June 15, 2011

Heaven and Earth

Posted in Life's Little Moments tagged , , at 9:24 am by autismmommytherapist

“Mom, what’s a soul?” my smallest son asks me as he runs pell-mell toward the end of the pier, his middle-aged mom trying desperately to keep at least five feet from his retreating backside. I gather my thoughts in the amount of time it takes me to pretend I’ve caught up with him (he always slows down out of pity), and together we collapse at dock’s end. I’m about to respond when he follows up with “Mom, when will you die?”, which knocks the breath out of me far more than this run down the fishing pier ever could. I silently curse my husband under my breath (he’s never around for the good questions), gather Zach into my lap, and remind myself that he’s four, and that it’s still okay to lie to him.

Hell, I might even save him six months of therapy down the road.

I’m not a strong believer in the afterlife, although perfectly happy to encourage anyone to embrace whatever gives them peace. At forty-four I anticipate I’m about half-way done, and since the last decade has been such a blast, what with the infertility years, the miscarriages, and the two kids with neurological disorders, I figure I deserve a good rest. If I make it to my eighties and Justin (in theory) has a safe place to live, I’m completely comfortable with taking a long, quiet, permanent nap. As long as there was some good wine, dark chocolate, and a Stevie Nicks song or two in my last moments to ease me into oblivion, me and the Grim Reaper, well, we’re good.

Unfortunately, I’m certain me and my four-year-old won’t quite see eye-to-eye on this one.

I must have waited too long to respond, because his next query revolves around the possibility of dinosaur heaven, and I know I’d better quickly address his questions before he forgets he’s asked them. I remind him that when we die our bones remain in the ground, and sometimes people go to visit those bones in graveyards to say hi to the people they’ve loved. I tell him that souls are the best parts of our spirits, the special qualities of who we are, the “stuff” that makes him Zachy. I share with him that (please dear universe) I won’t be dying for a very, very, long time, but that someday we’ll be together in heaven, along with Daddy and Justin, and yes, the soul of the dead squirrel in front of our house that he won’t stop talking about.

He looks at me quizzically, and I can see he doesn’t quite buy what I’m saying. Perhaps there will be an added six months of therapy after all.

These dialogues are new territory for me and Jeff. My “conversations” with Justin never delve into the world of imagination, instead remain entirely concrete in nature. There were a few years that despite his intelligence I wasn’t certain he understood even my simplest commands, such as “pick up that toy” or “please eat”, or, more frequently, “stop pinching me now”. We also entertained the idea that he did comprehend our requests, and simply found them far too mundane to concede to them. Trust me, if you could have seen the frequent looks of disdain I received while trying to convince him to engage in a far less motivating activity than the one he was clearly enjoying, you’d have had your doubts too.

Justin’s matured a great deal in the last few years, and now I’m absolutely certain he comprehends what we’re asking him, as now he usually complies with our first request. When it comes to the land of imagination however, the Santas, Easter Bunnies and Tooth Fairies that usually command a great deal of play in childhood, I’m almost certain he doesn’t consider them. I’m pretty sure that giant rabbit on the Easter bunny train was just a sweaty guy in a big white suit to him, and since he derives pleasure from the holidays in his own concrete fashion, I’m fine with that.

Besides, it’s one less kid with whom I’ll ever have to have the “death talk”.

With Zach, things will be different. I’ve already tried to explain the concept of “bad people” to him (“but Mommy, if you’ll protect me, why do I have to scream “NO!” and run from them?). I’ve attempted to interpret for my youngest why Justin destroys his favorite books if we don’t catch him quickly enough (I’d like someone to explain that to me too), and that’s it’s unacceptable for Zach to follow suit. We’ve had entire rapid-fire discussions about volcanoes, earthquakes, and tornadoes that have had me dashing for Google at lunchtime.

Trust me, it’s been a while since Mommy’s fifth grade science class.

I have to admit, I love it all. From the questions about the vagaries of weather and the lifespan of butterflies, to queries about the afterlife, I find his inquisitiveness so compelling, his curiosity a joy. These dialogues are a double-edged sword however, because I also know I’ll never stop yearning to have them with Justin. Although we convey so much to one another with our collective gaze, I’d still move heaven and earth to hear him utter something other than the word “mom” before I go.

Try explaining that expression to a four-year-old.

Eventually Zach clambers out of my lap, apparently satisfied by what I consider my lame explanations. He proclaims his desire for “juice and pretzels”, and I know our existential portion of the day’s events is concluded, and we’ll soon head for home. I take his hand, and for once he is quiet, perhaps exhausted by his run, or his perennial quest for knowledge. His mommy is exhausted too by the necessity of answering things “right”, although I know sometimes, I won’t. That’s just the nature of parenthood.

But this morning at least, we’re okay. And the one question I know neither one of us needs to ask, is who needs a good nap.

May 18, 2011

Letting Go

Posted in AMT's Faves, If You Need a Good Cry, Life's Little Moments tagged , , , , , , , , , , at 9:55 am by autismmommytherapist

Even at the tender age of eight, my son Justin has somehow managed to acquire several paramours during his short stint on earth. First, there’s the love of his life who lives around the corner, a girl for whom he would do anything. This dedication includes shoving me out of the room whenever she arrives to play with him (in a painful, bruise-in-the-small-of-the-back-kind-of-way, it’s a proud moment every single time). On a local beachside playground there was a lovely teenaged girl we continually encountered on summer afternoons, a love interest with whom Justin shared his toys, and his kisses. There have been mild flirtations along the way with the few girls in his classes (that 4:1 boys to girls ratio for autism has not been in his favor), including a young blond thing in pre-school for whom he tried to escape his classroom whenever he caught sight of her. Let’s just say, his one-on-one aide was in great shape that year.

And then, there was Kerry.

I’ve written about  Someone Special Needs You (SSNY) several times since I’ve begun this blog, not because I’ve run out of things to talk about (trust me, with autism, you never run out of things to talk about), but because it’s carved out such a unique place within Justin’s lexicon of activities, and within my heart. It’s a group which convenes eight times a year in a church in Colts Neck, NJ (nope, it’s not religious in its origins), and includes neurotypical teen-age peers and children with a range of disabilities as well. Sometimes there’s a theme, such as Christmas/Chanukah or St. Patrick’s Day. On occasion the group’s founder, Vince Scanelli, hosts a full-fledge carnival, or a graveyard Easter Egg hunt. There’s always a craft and an abundance of snacks, which Justin usually consumes as if he’s eating for three. For the most part my eldest only deigns to share his company with the group for about half an hour, but I know on some level, he enjoys his participation.

But the best part for him, hands down, has been his buddies.

Justin has never been a patron of the arts-and-crafts, and I’m pretty certain even the allure of unlimited potato chips wouldn’t convince him to get out of the car at 6:30 at night, at the end of a long week at school. No, the single most motivating factor to inspire Justin to do something other than handle toys that light up and spin, has always been women. This is a trait he seems to have inherited from both sides of his family, with the sponsors being his father and maternal great-grandfather, respectively. My son loves being fawned over (as on occasion, have said father and great-grandfather), and for at least a limited time, will do absolutely anything for a pretty, smart, kind girl who’s been his friend for four consecutive years (that includes painting a damn leprechaun).

And since he was four years old, for most of the time he’s participated in this group, Kerry has played the role of primary reinforcer.

Justin’s fabulous buddy is a senior in high school, and although I’ve had almost half a decade to prepare for her departure (come on girl, what about online learning, it’s the wave of the future), I was still unaware that our April get-together would probably be the last event my son would be able to spend time with her. I thought we had one more gig in May, during which I would have actually remembered to bring my camera and at least presented Kerry with some photos to remember Justin by, but I was informed early in the event that our sojourn to the gymnasium that evening would be our last until September.

Once I saw that Kerry had made it, and that Justin would get to say goodbye to her, I rallied (never let it be said I’m not a rock of a woman). I left the two of them to their own devices, and helped my husband keep Zachary alive, which given the height of some of the equipment and my youngest son’s refusal to fear anything, was no easy task. I admit, I was easily able to put Kerry’s imminent departure out of my mind in an effort to ascertain exactly how many exits Zach could escape from in each bouncy unit (generally, there were no less than three,  Jeff and I were outnumbered).

Eventually, after an hour of gut-queasy bouncing and multiple room changes, the evening concluded. I asked our soon-to-be-former buddy to escort Justin to the car so he, and I, could say a proper farewell to her. Jeff and I successfully strapped two hyper, over-tired young children into our SUV, I counted the twelve bags that comprise our entourage wherever we go, shoved them in the trunk, and asked Kerry to lean in and hug Justin. She did as asked, extending a full-body embrace and a kiss on the head to my boy, then she turned back to me to say goodbye and hug me too.

I opened my arms, got out “thank you for everything”, and totally lost it on the shoulders of an eighteen-year-old girl.

In my defense, just prior to completing that circle of love, Kerry shared with me that she would be studying to be a speech therapist in part because of Justin, and frankly, I’m not certain how I could have contained myself after that declaration. As I’ve mentioned before, I’ve managed lately to relegate most weeping episodes to television and film, the finale of Lost and my husband’s cruel sharing of the end of Toy Story Three coming to mind. I just don’t find crying all that cathartic anymore, what with the raccoon eyes that follow with the accompanying migraine chaser from hell, so I’ve channeled my desire for release into other outlets.

No, not drugs. Reality television and the blog, people, the blog.

I immediately apologized for sobbing all over her pretty Gap t-shirt, and managed to state without a full-fledged gulp accompaniment how much her participation in the program had meant to Justin, and to me. I thanked her for her commitment to him, how she showed up during flu season and finals, in inclement weather and sunny skies. I informed her she would be an inspirational speech therapist, and that I was proud my son had influenced her decision, even if only in some small way.

I shared with her that one of the most difficult things for me to accept about the nature of my son’s disorder was that in the truest sense of the word he doesn’t have friends, is bereft of the companionship that has sustained me through some of the most difficult periods of my life, as well as provided me with some of the most hilarious moments as well. I told her that in her own way she had been Justin’s companion for the better part of four years, and that filling this gaping niche in his life had played an instrumental part in his social growth, while simultaneously filling an aching need for myself as well.

Then I took a deep breath, sniffled one last time, and managed to let her go.

After making her promise to keep in touch I slid behind the wheel of my car, accepted the proffered tissue from my somewhat confused spouse, and carefully began backing out of my microscopic parking spot. Jeff asked me if I was okay, which unleashed a second wave of weeping, as I tried to explain to him what this girl had meant to our son and me, and failed miserably (it’s hard to talk when you’re hiccupping). Eventually I got a grip, engaged my GPS so I could find my way home and not rely on my husband’s incredulous instructions (the fact that we were simply retracing our previous steps means less than nothing to my direction-addled brain), and headed for home.

I glanced back at my boy, strapped carefully into his fortress of a car restraint, rocking out to Stevie Nicks and blissfully unaware that this hug heralded the end of an era. I sent a silent plea to the universe I wouldn’t have to witness him searching for her at SSNY in September, then eased into traffic on the main thoroughfare. I filled my lungs deeply one last time, searching for solace in the comfort of air, and in that moment, finding none.

And this time, I let that be okay.

February 23, 2011

Conference Call

Posted in Life's Little Moments tagged , , , , , at 10:17 am by autismmommytherapist

“Recalculating. Recalculating. Recalculating.”  I have to laugh as my GPS scolds me for irresponsibly avoiding the most direct route and taking the “pretty way” instead, because I spend a good deal of my life kowtowing to that particular verb, and I can’t seem to evade that reality even when I’m driving. I’m on my way up to Justin’s school for his first parent-teacher conference, and I’ve left myself so much extra time “just in case” that I can indulge myself with river views rather than the parkway. I do a time check as I ease another Stevie Nicks CD into my player, once again ending the eighties as I disengage my Sirius radio. I’ll be early, but regretfully not early enough for a Wegman’s run, and I chastise myself for answering emails this morning when I knew I’d be in such close proximity to food mecca later.

Priorities, Kim, priorities.

I glide serenely into the empty guest parking lot, happy I’ll have enough time for chit-chat with the lovely secretary who endured my multitude of inane questions when Justin first began attending school. She kindly lets Justin’s teacher know I’m here, and makes certain the class won’t be parading by the waiting area any time soon. In ABA terms Justin and I are “well-paired”, and if he even caught a whiff of mommy in the house, no matter how much fun he’s having at the time, he’d demand a quick departure. This child is even excited to leave school for a doctor’s appointment.

He is truly a momma’s boy.

Fortunately, today I don’t have to execute a duck and run, and as my son’s lovely teacher soon makes her presence known, we retire quickly to one of the administrator’s empty offices. She is a passionate educator, and it was evident the first time we spoke this summer that for her this work is a vocation, not a job. Given my dozen years in the profession myself I was ecstatic with our conversation, and I clearly recall hanging up the phone and executing the “happy dance” for Jeff, the image of which I will leave to your imagination. Although legally I’m only entitled to “free and appropriate” for Justin, we’ve managed to score “fabulous and exceptional” for him, and I still haven’t recovered fully from the magnitude of our good fortune. I continue to try and temper my joy just so I won’t completely terrify her.

She’s come encumbered with lists and folders and work, although we put aside his academics for a moment to discuss his behavior first, which for the most part has been as appropriate as possible for a moderately autistic youth. I am told that Justin’s weekend lunch date has taken on the mantle of “big brother” to my oldest child, and although my son generally ignores the rest of his classmates, he permits this particular boy to instruct him in the “fine art of school” frequently. He even looks for his buddy at certain venues, the computer, the playground, or the dreaded PE class, which he seems to enjoy about as much as his mother did. I am also informed that my son is a surreptitious hugger, often sneaking up behind his adored teacher and turning his face to hers for one of his intense gazes, followed by lip-lock, for no apparent reason at all.

He began this behavior at two. I’m happy to see the tradition has continued.

Since we only have thirty minutes together we dive into his academic progress next, and I sit up a bit straighter in my chair. She tells me he is flying, which I already knew somewhat from our daily email exchanges, but I was not aware how far, and how fast. She says she is thrilled with his progress, and confident that he will one day type in a manner more meaningful than the hunt-and-peck methodology I tell her he shares with his father. She positively beams as she explains he is soaring through his reading comprehension exercises. Given how many years his mother spent with her nose buried in books, there are no surprises there.

Math is his weakness (no surprises there either), but he continues to make inroads into that domain as well, despite the flip side of his maternal genetic legacy. He’s not a genius, my boy. But he has exceeded her initial expectations, and she remarks how rewarding it is to see him so excited by learning, how eager he is to come to the table, so to speak. She is pleased to see how aware he is, how bright. I tell her those latter facts are at once so gratifying, and so difficult to endure.

She says she understands. And I know she does.

After I finish willing my saline-laden liquids back into the ducts from whence they came I gingerly broach the future with her, because I’ve come to accept that living in the moment is a goal not easily mastered for me, and I just have to roll with who I am. One of my greatest fears is that when my son is grown there will be no job options for him, nowhere for him to spend his days other than at home with his aging, and most likely exhausted, mother. Despite his intellectual aptitude my son is held captive to the strictures of perseveration, the ritualistic routines that often prevent him from completing a task. There are entire days, if he were allowed, that he’d spend more time in the closet arranging his toys than I would organizing my wardrobe.

I worry that this issue, coupled with his proclivity for egress from everywhere after half an hour, will preclude him from meaningful employment. Again, I’m not asking for Wall Street, or a career in education, which is much more up my alley. I’m simply asking his teacher if she thinks one day, with a bit more maturity under his belt, he’d have the aptitude to labor at some occupation he might even enjoy, and would there possibly be a place for him to do so.

This time she straightens up in her chair, looks me right in the eye, and says “absolutely.”

Those damn ducts betray me as a few tears gather conspicuously in the corners of my eyes, and I exhale both physically and mentally, and smile. She tells me nothing is certain, the fact of which I am reminded on a frequent and daily basis, but the prospects are favorable. I really wish foretelling the future was a cornerstone of her contract, but I resist telling her this.

Of my restraint, I am so very proud.

We end our meeting as snack is soon to conclude in Justin’s room, and I am loathe to take his teacher away from anything remotely academic. She shakes my hand firmly, looks me in the eyes, and tells me how much she adores my boy, how happy she and the faculty are that he is a student there, that he graces her classroom. I commend her profusely for taking such good care of my son, and tell her that her professionalism has a ripple effect that far exceeds Justin, and extends to our entire family as a whole. I tell her I appreciate all of her hard work. I thank her for “getting him”.

And as I leave, I allow myself, for the first time, to contemplate the stunning idea that one day, my boy might actually have a job.

January 11, 2011

“They Like Me, They Really Like Me”

Posted in Fun Stuff tagged , , , , , , at 9:29 pm by autismmommytherapist

So, last week I became a recipient of the “Stylish Blogger Award”, which doesn’t carry quite as much weight as a Pulitzer, but to me is a far more substantial win than that trophy I took home for second place in the seventh grade spelling bee (damn that “j” in pejorative). I was particularly tickled to receive it on two counts, the first being that it was awarded to me by a blogger who pens Professor Mother Blog, whose writing I’ve recently discovered and found to be quite insightful, honest, and funny (pretty much my prerequisites for anyone I read these days). The second reason I was pleased was that I found myself in quite illustrious company with the other award recipients, who were Diary of a Mom, Elvis Sightings, and unOtherOne, respectively.

Of course, my delight lasted approximately thirty-two seconds as I realized part of accepting the prize (okay, completely fake award, but work with me here) would mean responding to it on my own blog. This wasn’t an issue per se, but said response would also have to include cutting and pasting of images, and Dare I Speak Its Name, the creation of several hyperlinks. Given that there was the strong possibility my husband might be out-of-town by the time I got around to posting this, I have to admit I was a bit worried about my acceptance speech.

Look, I’m only insecure about technology, driving, and cooking (although the latter is more of an aversion that borders on learned helplessness). Hell, I’m a firm believer that we all have something.

Anyway, I’m giving this a try, and in order to fully accept my prize I am required to post seven things you don’t already know about me, then tap three (okay, I chose four, sue me) other bloggers and pass this award off to them. So ladies and gentlemen, read on (I know, the suspense is killing you):

1) While I was a fairly mediocre French major (although gifted at European café-drinking and train travel), I remain completely fluent in “Ubby-Dubby” (Ubif yubou dubon’t bublubieve mube, gubive mube uba cuball).

2) When holed up in my room as a child (probably blowing off my homework) I read every piece of sci-fi I could get my hands on (Ray Bradbury, you will always have a little piece of my teen-aged heart).

3) I am (sort of) double-jointed. It is not nearly as interesting as it sounds.

4) My favorite pre-married New Year’s Eve was spent at a Hofbrauhaus with my travel-pal-Sal in Munich when I was twenty, where there really was no language barrier a good lager couldn’t transcend.

5) While I have serious issues with organized religion and deeply question the existence of an afterlife (as in REALLY, can’t I just sleep through eternity, is that SO MUCH TO ASK), I am however completely convinced there are ghosts, and watch Ghost Hunters with complete fascination even when it’s not Halloween.

6) I’d tell you my two favorite foods, but I think it’s pretty clear by now what they are (HINT: one contains cocoa, one is poured).

7) When I am pissed-off at the world I get in my car and rock out to tunes from Evita, Stevie Nicks, and “Lady Marmalade” from Moulin Rouge. I find it is impossible to stay angry for long when singing a song about prostitutes at the top of my lungs.

I am going to diverge from the “rules” a bit and pass this along to a few of my faves, and am choosing only one autism site. The rest are blogs/sites that have nothing to do with autism or disabilities per se:

There’s No Welcome to Autism Packet, What Now?

Style Epiphany

A Simple Kinda Life

KaitlinORiley

The first three women were incredibly helpful to me when I first started out in the blogosphere, and although I didn’t understand most of the suggestions they offered to increase my traffic, the ones I was able to decipher did make a difference. They are also lovely people and have fun sites, check them out when you can.

The last woman on this list happens to be one of my nearest and dearest from high school on, and is a fantastic (and published!) writer. Her genre is historical romance, I love her work, and recommend her highly. Aside from being a good read, her books are a fantastic escape, something we all need once in a while (or, if you’re me, quite often).

So check these sites out when you can, and thanks again Professor Mother Blog!