March 30, 2011

Wretches and Jabberers

Posted in Fun Stuff tagged , , , , , , , , , , , , , at 10:28 am by autismmommytherapist

This Friday night in New York a documentary film will be airing called Wretches and Jabberers (I know, it sounds like something that would have been broadcast on PBS twenty years ago). Despite its strange title, the movie is actually focused on a subject that, to my intense delight, is becoming more and more mainstream in the press. Its protagonists are Tracy Thresher and Larry Bissonnette of Vermont, and the film documents the struggles and triumphs of two adults with autism who remain all or mostly non-verbal, yet still have a great deal to communicate to the world.

And yes, if I had a life, I’d schlep in to see it.

Directed by Academy Award Winner Gerardine Wurzburg, the film follows both men on a tour of Sri Lanka, Japan, and Finland, as they speak with both “everyday folk” and Buddhist monks in an attempt to change peoples’ opinions regarding disability, intelligence, and modes of communication. Bissonnette possesses some facility with traditional language, Thresher does not. Both struggled in school and within their communities, but had whole worlds opened up to them with the creation of augmentative devices.

Yes, there’s a theme here. My fingers are crossed Justin’s iPad may one day lead to a similar success for him. Let’s just say my toes are crossed too.

When recently asked at a conference by the mother of an eleven-year-old girl with autism what advice the men had to give her, Thresher replied, “That is easy. Believe in their intelligence, presume competence, and most of all don’t sideline them. Make sure they live a life with dignity, having a purpose in life.”  That quote particularly resonated with me because my son, although non-verbal, possesses a fierce intelligence, one that might have gone unnoticed twenty, or perhaps even ten years ago. I shudder to envision the trials and tribulations these men must have encountered in childhood, living in a world not yet equipped to celebrate them. I shudder to think if I’d had my son at a “normal” age, this might have been his fate as well.

The director’s motivation for creating the film was to “challenge the general public’s perception about people with different abilities”. She considers this mission to be “both a human rights and civil rights issue”. Through their own accomplishments and Wurzburg’s “voice”, Thresher and Bissonnette have since successfully challenged these presumptions, as the two men formally regarded as “social outcasts” now are popular speakers at workshops and conferences. They have already altered the landscape of disability, simply with their presence.

And to Tracy Thresher, Larry Bissonnette, and Gerardine Wurzburg, a most heartfelt “bravo” for sharing and facilitating a story the world still needs to hear.

Wretches and Jabberers, for those of you who are not NY locals, will be playing at local AMC theatres nationwide on Saturday, April 2nd, World Autism Day.

For more information regarding the film:

http://www.wretchesandjabberers.org/

Larry Bissonnette:  http://www.myclassiclifefilm.com/

January 13, 2011

The Crush

Posted in Life's Little Moments tagged , , at 11:39 am by autismmommytherapist

My oldest son has his first crush.

Yes, there have been minor dalliances before, a connection with his chaperone at special needs church group, and a few flirtations with the cute girls in his buddy program when he attended public school. He’s reveled in their attention, even sought it out on occasion, but the look on his face when in their company has strongly resembled the one he reserves for both his mother and grandma. There’s been no special quality to his demeanor, just an unbridled joy that someone is playing with him, and whether that person has been ten or sixty has been completely irrelevant to him.

Until now.

I realized my son’s feelings for this particular teen-aged girl had evolved from a more pure form of love to an actual crush this past weekend, when I witnessed the look on his face as saw her enter our home. Normally, he just jumps up and down with joy, parading his happiness at her arrival with absolute glee. But today, well, today was different. I watched in fascination as he shyly sat down and covered his face with his hands, peeking out at her between two loosely laced fingers. He didn’t rush over to her as he usually does. Instead, he waited for her to approach him with her usual hug, after which he buried his face in her stomach and wrapped his arms so tightly around her I was afraid she wouldn’t be able to breathe. When I acknowledged the transformation, the subtle shift in his emotions, I found myself having trouble breathing too.

He couldn’t have chosen a better person to be the recipient of his affections. This young lady is a neighbor of ours, has endured a rather difficult life at times, and has come through all of her battles with tenacious grace. She is bright, sweet, and possesses an innate sense of justice that she wields with impunity whether someone is being rude to her, or rude to someone she loves. There is an edge to her I didn’t discover in myself until I was almost thirty, and an optimism regarding the life she hopes will unfold for her that has garnered my complete respect. If I’d had a daughter (although now I’m fairly certain I’d never have the energy for that gig), I’d have been lucky if my offspring resembled this not-quite-girl, not-yet-woman.

I am well aware that this may be Justin’s sole foray into the world of “romantic love”, an opportunity where his affections, although of course not returned, will not be entirely spurned either. I am grateful for their interaction, this chance for him to be treated with kindness and respect, this time for him to be unguarded in his emotions. I know he’s lucky to experience this, and will probably have these moments a few years longer until this lovely girl goes off to college (unless my bribes to encourage her to remain around the corner actually work out). I am happy for him.

But of course, planner extraordinaire that I am, I can’t actually dwell entirely in the present, I must of course contemplate the future. I have to wonder what my son will desire in his lifetime, what, if he could speak, would comprise his own grand plan for his future. In an irony not lost on me, (and there are many of these in my life), I once worked as a young woman in a group home for autistic men. As most of them were non-verbal, I often wondered if they felt in any way that they were missing out on the trappings of “normal” life, if they longed for anything other than their structured routine, the chores and errands and meal-makings that bookended their daily lives. I remember thinking they seemed content, but this was several decades ago when communicative devices were not in abundance as they are now, and since they didn’t speak, there was no way to really gage the measure of their happiness other than with the absence of their angst.

I watch my son disengage from his paramour, gently take her hand and lead her to the computer room, and I acknowledge to myself I may never really know either what he wants, or what he needs, despite the incredible advances in technology now available to him. Requests for movies, snacks, and the occasional query regarding a hug are lovely, and I’m thrilled he can communicate them to me, but his technological device does not permit me to plumb the depths of his soul. And I will tell you, without equivocation, that even without the capacity for speech, even without the structured placement of verbs and nouns and adjectives, a lovely soul does there reside.

They both giggle as they mount the stairs, and my son throws the briefest of glances my way, an acknowledgement that mommy’s done right by him, that he is indeed, in this moment, supremely happy with his life. I remind myself, as I often do, that all we really have is this time, this particular moment, and I should dwell here and nowhere else.

And I promise myself, I’ll try.