January 6, 2013

Cleaning House

Posted in Life's Little Moments, My Take on Autism tagged , , , , , , , , at 3:26 pm by autismmommytherapist

May 2012 070

This past fall I took a bit of a hiatus from writing as much as I usually do, and instead took a good long look at the state of my house. Topically, it wasn’t in such terrible disarray (that is if you ignored my dining room and kitchen tables, the two Bermuda triangles of my home where papers seem both to congregate and disappear with impunity). On the surface things didn’t look too bad, but really, I knew better.

I’ve been spending most of my free time the last six years writing a book (shameless self-promotion to come), contributing to magazines, concocting my play, and of course penning this blog, and have wantonly ignored the shelves and cupboards of my helpless home as a result. This fall I knew it was time for a colossal “spring cleaning” when my youngest got into one of my bureau drawers and asked if he could color one of Justin’s Christening cards.

I am a bad, bad housewife.

I am also however a girl who loves a good project, and I dove into reclaiming the inner sanctum of my abode with my usual enthusiasm, and found it all quite cathartic. A sushi-making kit from 2002? Disgusting, and gone. NJ Monthly’s Best Eats from 2006?  History. Pants I haven’t worn for multiple unpleasant reasons since the first Bush administration?  Donated. My kids’ former Halloween costumes?  Safely ensconced in their closets.

I am not that heartless.

I saved my bedroom for last, in part because I knew this would be the biggest job, and in part because of potential minefields awaiting me. Until a month ago I had filed and saved perhaps every single piece of paper documenting both boys’ journies with autism, all categorized neatly in manila folders, and organized in my own particular fashion that worked for me.

To be fair to my hoarding predilection these documents were incredibly helpful when I was writing my book, as my memory was pretty shot by the time we left Virginia, and reclaiming my New Jersey territory didn’t seem to jostle it. I used a number of these papers to help me remember those early days of Justin’s pre-diagnosis, and of course everything that happened afterwards. I even used some of them to help construct the “Zachary section”, even though my writing pretty much occurred just after the events at hand.

It sucks getting old.

The truth is the information was invaluable, but I hadn’t looked at those files before my “purge urge” last month, nor have I missed them since. As sentimental as I am, I do not need to retain for posterity every single art project my children have created since birth. Potty training how-to’s can go to the landfill (hallelujah chorus twice for that one). Gluten/casein-free recipes I downloaded from the internet can follow suit (in part because they usually suck, and in part because if I haven’t made them in five years, it’s probably safe to assume it’s never going to happen). Discarding these files was easy, as I employed the McCafferty “year dictate”- that is, if I haven’t opened it since last Halloween, to the rubbish it must go.

And for the most part (except for my friends’ birthday cards, which I am saving for my nineties as a future pick-me-up), I remained faithful to the rule.

Eventually I got to the core folders, the ones documenting Justin’s progress through Early Intervention and school in two different states, and I took a moment to peruse a few of them, all literally as thick as a hardcover George R.R. Martin. Encompassed in manila were all of his progress reports, assessments, and goals for the future. I let my eyes wander down yellow pages formally part of an often official triplicate, checking dates which made me recall where I’d been both emotionally and physically when they’d been filled out.

Some of Justin’s targets revolved around socialization, primarily that he would one day have a friend. Many of the papers outlined strategies to tear him away from his perseverative pursuits, all hoping that he would one day engage in more “typical play” than he did as a toddler. Most of the goals centered around communication, either encouraging him to expand his sign repertoire, or soliciting those coveted vowels and consonants that almost completely disappeared after his first birthday. All were designed to change the core of his behavior, some of the essence of who he is.

I admit, even after eight years of knowing definitively that my child has autism, I had to put those files down for a breather. Chocolate helped.

And it hit me, as I sat surrounded by flimsy cardboard and discarded candy wrappers, that the focus of my goals for Justin have shifted radically over the last decade. The dreams I had for the infant who made me a mom nine years ago are indelibly different from those I long for now.

Most likely Justin will never attend college, have a best friend, or have a conversation with me that doesn’t include his iPad. Those realities still make me sad at times, but I often wonder for whom that sorrow applies. Justin is thrilled with his life. Frankly, my husband and I reflect frequently upon the fact that he is often the happiest member of this household. I have the gift, and it is a gift in the world of autism, of knowing that if I can keep him safe, engaged, and challenged throughout his eighty years, his will be a fulfilled and productive life. At the end of the day, if through luck and hard work I can procure those realities for my son, his will remain a joyful soul. I no longer want to change who he is.

I simply want to enhance his life as much as possible.

I gathered up the files surrounding me, and unceremoniously dumped them into a waiting garbage bag. I no longer have a need to return to the past. It’s time to focus on the future, on acquiring that safe haven for my firstborn son that includes a job he’ll enjoy, and hopefully access to those horses he adores. It’s time to recognize that although we haven’t reached those goals forged so long ago on paper, we’ve been successful with Justin all the same. It’s time to simply revel in him.

It’s time to purge.

November 9, 2010

Ode de Toilet

Posted in Life's Little Moments tagged , , at 8:57 pm by autismmommytherapist

YIN

One toilet.

One seven-year-old boy.

Three game cartridges.

One flush.

Four hundred dollars in plumbing costs.

One irate husband.

Three more “flushable offence” attempts.

One hook installed on bathroom door.

Two years of facilitating independent toileting in one autistic child, now literally down the crapper.

One really pissed-off mother.

YANG

I am happy to admit that in this household when one door closes the proverbial window often opens, but this week I’d have to say it was more of a sliding glass door that yawned wide for this family. It seems after only three-and-a-half weeks of being convinced that relieving himself on the potty was inherently a terrorist plot conceived entirely by mean mommy, my youngest son, Zach, has changed his mind. Of course I should note that he ceased to have accidents in school a mere twenty-four hours after being introduced to underwear, yet decided to frequently torture his parents despite multiple potty seats and so many bribes for success that his college fund is in serious jeopardy.

Trust me, this boy knows how to work it.

To tell you the truth, although doing sixteen loads of wash a day for the better part of a month wasn’t really a part of my extravagant life plan to live large, I was able to deal with it because of that little voice in my head, the one that I’m certain is REAL. My loquacious friend was kind enough to inform me this particular child was going to “get it” quickly, that I just had to find the correct reinforcer, and all would be well. Unlike Justin, who ultimately needed to be yelled at to stop watering my carpet more than nine months after we started, I knew Zach would only respond to positive reinforcement and the precisely correct “prize”. If I wanted him to have success, it was up to me to figure out what would make him go.

For several weeks I tried pretzels, GF/CF Halloween cookies, the promise of trains, planes, and automobiles, additional tv time, etc., all to no avail. Hell, at one point I even promised him an extra visit with Pat, his favorite babysitter and the woman he’s pledged to marry someday. You know you’re desperate when you’re contemplating shelling out $30 just to see some yellow liquid in your potty.

Eventually I hit on the idea of trading Halloween books for urinary output, and I could tell the idea was enticing to him. He REALLY wanted those books, and as I paraded around the house with them, regaling him with titles including dinosaurs, ugly pumpkins, and confused ghosts, I could literally see him contemplating the cost of those reads, wondering if he could conquer his fear of our potty for the twenty consecutive seconds required to pee. He was tempted, and I knew I was reeling him in. Finally, one afternoon when he’d clearly transformed into a camel and held it in for no less than three solid hours, I was eventually witness to an extreme version of the “peepee dance”. I quickly whisked him off to our bathroom, told him he was staying there until he went, and dangled those books right in front of his little face.

He was mad. He was sad. There were tears and wringing of the hands. Since he has the memory of a young elephant I am certain down the road he will remind me of my treachery as often as humanly possible, and attempt to leverage it for something really expensive.

But eventually, he went. He joyfully, gloriously, christened our toilet, and it only took five minutes (and one month) of waiting to hear that melodious porcelain tinkle. He was proud. I was relieved, and eternally grateful that “the store is closed” and this is the last time and the last child whom I will ever have to train (I know you’ve all been dying to bequeath your offspring to me, but unless they’re bathroom savvy, don’t even think about it). His satisfaction was a thrill to behold, and I think these pictures say it all:

October 15, 2010

Potty Planning

Posted in Life's Little Moments tagged , , , , at 6:14 am by autismmommytherapist

“No way, the potty is closed!” Zach cries as he runs into the living room, my middle-aged ass trying desperately to catch up to him. “No hon, it’s open for your business” I yell at his retreating back, moments before I finally manage to corner him between the couch and the chair. “BUT I DON’T WANT TO GO ON THE POTTY!!!!” he informs me in no uncertain terms, and I realize if we’re to keep true to our “every half-hour potty training protocol” I’m going to have to carry him bodily to the toilet, kicking and screaming as we go. This is not exactly how I envisioned our two-hour break between pre-school and nap to go today, but since I’ve already been through this once with the other kid, the one who took over a year to train, I find myself oddly unmoved by his pleas. Sadly, for Zach, I used up all of my “potty empathy” on his older brother. He’s just going to have to suck it up.

They say all kids are different, and this adage is certainly holding true when it comes to my sons and their spectrum issues, even down to good old pee pee on the potty. When Jeff and I went through this years ago with Justin he showed no fear of releasing his waste to the porcelain god, just an utter disdain at the thought that he was required to make any kind of effort in the removal of his bodily fluids. Frankly, he would have been perfectly happy to have me wipe his ass for the remainder of his life, and there was a period of time when I thought that was exactly what was going to happen. Justin’s issues with the bathroom centered around pure laziness, an unwillingness to relinquish a toy or a moment with his DVD player that he could never get back. He was simply being stubborn about learning a new skill.

Can’t imagine where he picked that up.

My youngest, on the other hand, seems to be terrified of the entire concept. And yes, we read Elmo Goes on the Potty beforehand. We’ve had him cheer for Justin’s peepees and poopies for the last year, even allowed him to flush them away, a treat which satisfies him to this very day. He has a reward system of his choosing in place, one in which the child only has to sprinkle the pristine surface of the toilet water on three separate occasions to get his coveted prize, a new Halloween book (yup, he’s my son). We’ve already aborted this mission once in the spring when he had just turned three (and his poor pre-school teacher was changing sodden clothes five times a day), and I am determined that this time we will stick it out, AS GOD IS MY WITNESS. So far, he’s emulated his brother completely, staying completely dry at school, urinating once in the toilet just to show off, then returning home.

Yes, home, where for the last week I’ve run through three detergent bottles in as many days. I’m so thrilled to put the children of Tide’s employees through college this fall.

I have to admit, when we did this with Justin we had moments of real despair, knowing that although it’s the exception and not the rule, there are adults with autism still in diapers. Apparently, mastering the art of the potty has nothing to do with how intelligent they are, so the fact that Justin was reading at three was no clear predictor of whether or not he’d require Depends. It took thirteen months (but who’s counting) to get him to a semi-independent place in the bathroom, and I have never been more relieved than when his clean clothes finally began to outnumber his dirty on a daily basis. I believe I actually did a happy dance.

No, you will not see it on YouTube.

The truth is I’m much more inured to Zach’s angst because we’ve been successful once before, he is fairly easy to cajole out of terror, and because I’m pretty certain the allure of a Tyrannosaurus Rex Halloween book will outweigh his fears eventually. That, coupled with the fact that I’m also certain he has a thing for blonds and won’t want to be dating in diapers, gives me hope that this child will conquer this skill too, and hopefully before Halloween 2011. Perhaps I’m being premature, but I swear I saw a slight grin through his tantrum the other day when he thought I wasn’t looking, and the giant smile he sported when he finally did tinkle in the appropriate receptacle could not have been faked. I may be going out on a limb here, but I believe, OH I BELIEVE, my diaper days are numbered.

But if you hear loud screams from central Jersey in the next few months, you’ll know I was wrong