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:

Larry Bissonnette:

March 16, 2011

In Memorium, Part Two

Posted in AMT's Faves, If You Need a Good Cry tagged , , , , , , , at 9:21 am by autismmommytherapist

This past Saturday morning, while leaving my husband alone downstairs to fend for himself with the wee ones, I snuck upstairs to steal a few glorious solo minutes in the shower. Of course, no trip to the second floor would be complete without a stop at our computer to compulsively check email/Facebook/how many hits I’ve had on my blog today, and since this is one obsession I’m loathe to deny myself, this time was no different than any other. Usually there’s nothing of great interest during the fairly early hours of a weekend morning for me, but as I tore myself away from the coverage of Japan, one item in my email caught my eye.

The Schafer Autism Report was out again, and I bargained with myself I’d simply skim the headlines, and save the “issue” to peruse later. There were, after all, two small, energetic children waiting downstairs to be released from captivity into any activity that does not include the four walls of our home, and I have my responsibilities. I reminded myself to skip shaving my legs (oh, what a sacrifice) so I could get downstairs sooner, began to swivel my favorite leather chair towards our bathroom, then stopped mid-swerve as I saw the headline:  “PA Caregiver in Autism Death Sent to Prison”.

Those kids would have to wait.

I first wrote about this horrifying event last summer (here), so if you want the full back-story you can catch up with my prior posting. I penned the piece about an autistic man literally boiling alive in a van due to the negligence, and unwanton cruelty, of a caregiver just a few months after a similar story of utter horror had run on the SAR. This story was beautifully covered by both adiaryofamom and MyBrainWantstoGoHome, and if you have time to read their posts, I suggest you indulge. Educating yourself on these matters may one day, for a child, result in the difference between life and death.

I chose in part not to write about the mom who poured poison down her autistic children’s throats partly because I felt these two bloggers covered the event so well I had nothing to add (an unusual event for me), and partly because I am certain this will never happen to my children. There may not be much I can control in life, but as I mentioned in my prequel post, of this I am sure. I will never kill my kids.

So, I decided to write about the ramifications of permitting a helpless, non-verbal, autistic man to die an excruciating death alone, perhaps within calling distance of his caregiver (had he of course possessed the ability to speak), because this is a possibility for my eldest child that haunts me every single day of my life. At some point, hopefully a long, long, time from now, Jeff and I will be dead, and Justin will be left to spend the remainder of his life without us. I predict that his brother will be able and willing to look in on him from time to time, but I am aware he cannot be his shadow twenty-four hours a day, for perhaps forty years. All it takes is mere minutes, or seconds perhaps, for his caregivers to forget he’s in a pool, or to turn their heads as he runs unattended into a busy street. His life could end because the sheer magnitude of caring for an adult autistic man every moment of his days will be overwhelming, and accidents could easily happen.

Or, as in the case of Bryan Nevins, he could be left to dehydrate to death in a car, while somebody who doesn’t give a damn texts her boyfriend.

As I sat in my slightly sweaty work-out clothes and read the short piece chronicling the outcome of the trial, I could feel my entire body tense at the words, felt an overall shudder of disbelief creep over my limbs. It seems that Judge Albert J. Cepparulo of Bucks County, PA was less than impressed with Ms. Stacey Strauss’s acceptance of her responsibility in her charge’s death. In fact, he was quoted as stating “Frankly, Ms. Strauss, I don’t believe I’ve heard a less remorseful statement from someone about to be sentenced”, with this remark following Ms. Strauss’s apparent sobs, which were bookended by frosty denials, as she pleaded her case.

Just to be clear, this judge, in his time on the bench, had never heard a less remorseful statement, as he subsequently sentenced Ms. Strauss to two to five years for involuntary manslaughter. And while I’m relieved there have been serious repercussions for the accused, I’m certain that punishment won’t alleviate the lifetime sentence Bryan Nevins’ parents had handed to them. They most assuredly will have to contemplate both the fact that their son is dead, coupled with how he died, until death itself claims them.

I would imagine those gruesome, unfathomable images will make their intrusive presence known to them often. Most likely, those visions will plague them every, single, day.

Maybe Ms. Strauss is congenitally evil. It is possible of course that she was just having a bad day, perhaps embroiled in an argument with her then-beau. It is conceivable she had a bad childhood. I can truly say, in each instance of excuse as to why she cruelly allowed this man die, that I most wholeheartedly do not give a crap.

What chills me the most however, is the possibility that she simply did not regard Mr. Nevins as fully human.

People have asked me frequently why I write this blog, and why others share so prolifically about their daily lives. I do not intend to speak for other writers, although I personally know a few who share my sentiments. I will, because I possess the precious gift to do so, only speak for myself.

I write about my boys because they are both exuberant, emotional, loving, children.

I write about my eldest son because Justin, for those he adores, has more empathy encompassed in his little finger than many adults I’ve encountered during my lifetime.

I write about Justin because my eldest is completely without guile, possesses perhaps the purest soul of any individual I’ve been fortunate enough to meet.

I write about my boys because their smiles simply take over their countenances, leaving those around them buoyed in spirit, forever altered.

I write about my boys because they are fully, and completely, human.

I wish, God how I wish, that today’s children will grow up with a different perspective on disability than perhaps our generation did. I pray that the school programs that have been implemented, the organizations, the television shows, the films, the books, the blogs, the laws, will continue to alter peoples’ perspectives on the inherent worth of our children. Perhaps, most importantly, the dialogue that transpires between parents and kids about that neighborhood child, or the one in homeroom class, will serve to further the cause. I can only hope from this hard work that awareness will continue to grow, and a travesty of these proportions will never be repeated.

And as I end this missive, much as I did my last post on this subject, I share these sentiments with all of you:

I am so sorry, for the sister who has lost her sibling, her childhood companion.

I am so sorry, for the parents who have unwillingly relinquished a cherished child.

I am so sorry for this man’s autistic twin, for his having to face life without his beloved best friend.

I am simply, so, so, sorry.