November 28, 2011

My Autism Play (a.k.a. What I Did Over Summer Vacation)

Posted in Fun Stuff tagged , , , , , , , , , , , , , , , at 11:50 am by autismmommytherapist

As I’ve mentioned before on this blog, since 2010 things have been going pretty well chez McCafferty (I had hoped the tide would turn with President Obama’s inauguration, but we had to wait another year). Everyone eats now, and for the most part everyone sleeps through the night as well (except for me). In general, that high-level angst we were enveloped in now seems only in evidence when Zach is not getting what he wants EXACTLY how, and when, he wants it. Fortunately, since I am a veteran teacher, this is a situation I usually feel extremely capable of dealing with on a daily basis.

When handling Zach, the fabulous Tina Fey quote from Prayer for a Daughter, “I will not have that Shit. I will not have it”, often comes to mind.

Even with the impending end of the world (again!), and the fact that scarves are the style and I still can’t figure out how to wear them, we seem to have reached a lovely little détente with autism in this house, an acknowledgment that it still lives and breathes amongst us, but perhaps isn’t the main things we talk about anymore. I believe last Tuesday, for thirty-seven consecutive seconds while I was making dinner, I actually forgot my kids had it.

Then Justin asked me to rearrange his book shelf for the five thousandth time that day, and I remembered.

The truth is, I’ve slowly realized over the past two years that I’m truly enjoying myself and having fun again, which was pretty much my main goal in life for thirty-six years before I became a mother. I’ve had to take some baby steps to return there, fought off a few mild panic attacks after having a good time for more than five minutes, until I realized my progeny were actually happy too. For me at least, it took a while to claw my way out of what Susan Senator so aptly named “siege mode”, a not-so-fun way of life within which the McCaffertys dwelled for a good half decade or so.

Trust me, I am much more pleasant to be around now. Just ask my husband.

Back in what I lovingly refer to as “good times” (or that year-and-a-half in Virginia where I crawled around after my autistic toddler six hours a day trying to get him to sign “ball” because our Early Intervention services sucked), I found myself working side-by-side both with my son, and that famous cycle of grief. I can clearly remember one particularly chill fall day, where I’d spent an hour with Justin building a ball “thingy”, soliciting great signs and extreme enthusiasm from him with ease, a double coup. When we completed our masterpiece Justin went to attach the final ramp to the tippy-top, and when he couldn’t make it click he became immediately distraught. Before I could intervene he simply smashed the whole thing to the ground, looked at me with what I swore was unbridled outrage, and threw himself to the ground in a tantrum I’m certain they could hear at the White House.

Through the caterwauling I recall thinking I’d missed Oprah’s Favorite Things for this. I admit, I was bitter.

I remember, as I tried to scoop up all the tiny plastic pieces I would certainly step on later, that I knew a year into the “therapy wars” that this wasn’t enough for me anymore. It had been twelve months since Justin’s diagnosis, and although he’d actually made a lot of progress in a number of areas, it was clear to me he wouldn’t be one of those kids who “recovered”. I also realized over the course of that year I’d made a mental shift, perhaps out of necessity, or to save my sanity. I was no longer striving to completely eliminate Justin’s layers of autism, banish them from sight.

I simply wanted the kid to find his damn happy place. Was that too much to ask?

So, I returned to that famous grief cycle and struck a bargain with the universe (nothing specific mind you, I like to keep my options open), one I will honestly confess was nothing but a win-win for me, which is how I like things. I made a promise to myself that if my child ever smiled more than he cried I’d move beyond therapy and folding laundry, and actually do something for myself, and the autism community as well. These things included (but are not limited to) writing a book/blog, creating some kind of fundraiser that could easily be schlepped around, and finally, a project me and my mom could implement within the public schools. So far, I’ve accomplished step one (at least five people RAVE about my unpublished “back-story”), and the blog is simply a joy. So, in an effort to keep true to my promise this summer I moved on to step two, and in my “free time”, I wrote an autism play.

Which, in case you weren’t aware, is exactly the next logical step for an ex-French major/housewife with one publishing credit to her name to undertake.

It’s a simple little endeavor, one which requires the actresses just to sit and read a script out loud, because at this point in middle age, I’m pretty certain I’ll never memorize anything again. I’m shooting for putting it on in April during Autism Awareness Month, even if it ends up being in my house (and trust me, that’s a serious possibility). I’ve had the great fortune of finding out last week that POAC, Parents of Autistic Children, has agreed to let me “produce” it for them as a fundraiser. If we can get people other than my mommy to show up to this play (she really liked it!), perhaps we can generate a little revenue for a great organization, and a great cause.

I’ll be writing about this periodically, so for now I’ll be keeping more details under wraps (I know, how will you survive the suspense?), but I look forward to taking you on my journey of securing actresses, begging people to use social media/witchcraft to promote this thing, and finding a venue bigger than my living room. Trust me, I’ll need help with a title (I suck at those), and a great song for us to walk on stage to (thinking “Lady Marmalade” from Moulin Rouge is fun, but perhaps a song about prostitutes might be a wee bit inappropriate). In advance, I am grateful for all the suggestions and support I know you will show me.

But most of all, I’m simply grateful for my sons’ smiles, and for enjoying the absolute luxury of trying to fulfill a bargain.

March 20, 2011

The Blues

Posted in My Take on Autism tagged , , , , , , at 9:17 am by autismmommytherapist

This past week, an exquisite writer named Jess, the author of adiaryofamom, wrote an impassioned missive to the President (yes, the REAL one) that actually has a great chance of landing in the man’s actual hands. In the letter, she spoke of many important issues surrounding autism and its myriad manifestations, but her writing really focused on one central tenet:  the need, the imperative need, for ever-increasing awareness of every aspect of this disorder. She then asked the President, and all of us “regular people”, those with and without a connection to autism, to please show our support for this mission. The plan, by changing both the White House’s and our own porchlights to blue on Saturday, April 2nd, is to show solidarity on what will be our fourth annual World Autism Awareness Day.

This is one blogger who’s sending her husband to Walmart next week.

Jess writes so eloquently in her directive to President Obama that to do it justice you need to read it (here), and if you have the time, any comments you leave on the site could possibly help further the cause. I would be so appreciative if my readers would take the opportunity to do so.

As Jess so aptly put it, “awareness is not the goal, but the means by which we will achieve it.”  She’s right. Awareness is the precursor to discourse, to the written word, to impassioned speeches, to initial drafts of legislature, to the salvation and sanctity of law. It is not the endpoint. It is the catalyst to change.

And for the million or so adults and children on the spectrum in this country, and the multiple millions on our planet, it is imperative this awareness continues to take root and blossom in every corner, and in every crevice, of the world.

In her letter Jess states, “Blue says we are here. We see you. We hear you. We support you.”

I am asking those of you who read this blog, and particularly those who reside in New Jersey, where the prevalence for boys who have autism is 1 in 64, (yes, 1 in 64), to please support us on April 2nd. Shroud your outside lights in a strong shade of blue, and illuminate the world.

On behalf of my children, I thank you for your support.