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.

October 17, 2011


Posted in My Take on Autism tagged , , , , , , , , at 9:24 am by autismmommytherapist

“Hon, I’m pulling out something from the paper for you to read” my husband calls to me as he stands in front of the kitchen counter, where he’s diligently clipping coupons for the week. I yell back “thanks”, and continue to supervise Justin washing his hands in the bathroom sink, a task both of my children still find fairly distasteful after all these years (must be a boy thing). I tell him to put it on my “pile” in the living room, a mound which mocks me daily as I ignore articles and magazines while I attempt to finish the most recent book in the Game of Thrones series (George R.R. Martin, you brought me back to the fantasy genre and entertained me all summer, I owe you, well, SOMETHING).

My eldest wipes his hands, then hands me the towel until I gesture for him to put it back himself (okay, technically I am the maid around here, but surely you can find the towel rack by now). Justin gives me one of his bear hugs, one of his embraces which requires me to sit down so I don’t fall over, and by the time we’ve exited the bathroom, I’ve promptly forgotten what my husband yelled to me from the kitchen.

This is not exactly shocking news around here.

I am later reminded of the existence of this article solely because my husband placed it prominently on top of the mountain of literary material which lives on our coffee table (I need my visuals). Much, much later in the day, when two boys are technically in bed for the evening and I am able to enjoy my downtime, I casually pick it up as I wait for Halloween Wars to start on the Food Network. This is a station I frequent in the hopes that I’ll absorb some of the techniques by osmosis, and they’ll translate to my cooking.

So far, they haven’t.

The title of the article from the Asbury Park Press is “Success at hiring autistic adults”, which immediately perks me up from my post-four-days-with-child haze. Along with what I like to call my “reach dreams” (adequate Early Intervention and school-age autism programs in every state, insurance coverage, and safe and appropriate housing for all), is this wish. That each adult with autism who is capable of holding a job, no matter where they fall on the spectrum, will one day be employed.

And Aspiritech, a nonprofit in Highland Park, Illinois, is just one more company working toward making a dream come true for these adults.

The article highlights several of the employees, Brian Tozzo, Jamie Specht, Rider Hallenstein, and Rick Alexander, four young men with Asperger’s syndrome. It turns out that some of the unique characteristics common to this type of autism, such as a facility with retaining detail coupled with a desire for repetition, make these particular employees incredibly skilled with computers. According to Dan Tedesco of a Connecticut-based company which used Aspiritech to test one of their iPhone apps, the workers there “exceeded my expectations”. He later goes on to say in the piece that the workers at Aspiritech had a “pride in their product you don’t usually see in this type of work.”

Apparently there are eight other clients just as pleased with Aspiritech’s work, which is a wonderful start.

The article later goes on to state that the company, founded by Moshe and Brenda Weitzberg, was founded after their son Oran, now thirty-two and a young man with Asperger’s, was fired from a grocery-bagging job. The Weitzbergs modeled their company after an organization called “Specialisterne”, or “the Specialists”, a Danish company which also hires employees with autism as their software testers. One of the testers at Aspiritech, Katie Levin, thirty-five, was not even diagnosed with the syndrome until she was an adult, was instead herself labeled as mentally ill as a child. I can only imagine what this job, and being part of this community, must mean to her.

Just reading about the existence of this company, when I think about Justin’s future and my desire for him to have a job he enjoys, holds great meaning for me.

The article is a quick read, and I put it down as the witching hour looms on cable, and edible haunted houses await me. This is just one more trickle in a rush of good fortune to befall the autism community lately, with states like California approving a bill which requires coverage of autism treatments until their federal health care law can be implemented, or (and my personal favorite) the passage of CARA. There are many more drops in our recent waterfall, too many to list here, or this would be the longest post EVER (and all of you have just so much time on your hands).

So here’s hoping that Aspiritech, and more companies like it, continue to make a splash.