April 2, 2011
World Autism Day- Free To Be You and Me
“Justin, for the love of God, PLEASE SIT DOWN!” I implore my almost eight-year-old, as he thrusts his body through the narrow space between the front seats of our SUV, desperately trying to free Sheryl Crow from her imprisonment in our car’s player. We’re leaving for speech therapy ten minutes late as it is because his school bus was delayed, and I’m irritated by the thought of the impending traffic I know we’ll soon encounter. I’m really not in the mood for this OCD ritual today, the current “compact disc musical chairs” that has replaced shoe/toy/DVD rotation in his devotions. I’m especially chagrined because I’ve trained him to like MY music, allowed him to pick from a carefully selected musical portfolio prior to every trip, and none of these choices has ever encompassed children’s tunes.
Now that this new obsession has begun every CD in the house is a target, and unfortunately some songs from long ago have come back into play. I finally cajole/coerce him back into his own spot, manage to shove his hands clutching fistfuls of circular disks through the slotted holes of his harness, and rush back to the driver’s seat. Before we exit the driveway I reach back and say “Give me what you’ve got, Justin”, and as our fingertips brush briefly against one another I feel the cool, pliant plastic of his selection slip into my hand. If there’s any justice in the universe, it will neither be the Wiggles, nor Barney.
Thankfully, it’s “Free to Be, You and Me”. If he’s going to torture me with kids’ songs, at least he possesses good taste.
I smile as I insert his choice into the yawning maw of the DVD player, because these melodies summon pleasant childhood memories for me, hours spent in my room hiding from my little brother, afternoons playing with my dollhouse and grooving to vinyl. I’ve always thought of “Free to Be, You and Me” as the musical equivalent of the literary phenomenon “Everything You Ever Needed to Know You Learned in Kindergarten”, with its magical messages of tolerance, acceptance, and inclusion. I remember my mother telling me what a big hit it was at the time, particularly as it was introduced during an era of “peace, love and happiness”. I have to grin as I listen to the soothing baritone of Alan Alda reminding us it’s okay for boys to play with dolls, followed by the dulcet notes of Marlo Thomas imparting her message that girls must break free of stereotypes, and follow their own non-scripted dreams. There are other fundamental lessons imbued into these lyrics, monumental concepts such as crying is okay even if you’re male, we all deserve respect no matter what our skin tones, and one remaining especially current in today’s world, don’t believe everything you’re told on television.
Reality TV has made the latter particularly relevant (yes, I mean you, Rock of Love’s Brett Michaels).
We manage to make it through lights that usually halt us in our tracks, and as I check the time I realize we might only arrive a few minutes later than our intended hour. Justin is rocking out in the backseat to Don’t Dress Your Cat in an Apron, and I ponder how far we’ve evolved since this musical melange’s initial debut, how much kinder the world has become, and yet how far we still must strive to go. Since this record’s release I’ve witnessed gay military personnel win the opportunity for disclosure, as well as the right to celebrate the ritual of permanent union in many states. I’ve watched women not only destroy but redefine the concept of the “ceiling”, as they’ve attained the highest positions both in business, and in government. Men have begun to take their wives’ names, as well as their traditional roles as caretakers of children. Finally, two years ago I sat with hot cocoa in hand, forced the boys to snuggle next to me, and reveled in the beauty of a man of color finally ascending to the most elevated office in the land.
There’s still so far for all of these groups to go, barriers yet to transcend, prejudices to puncture and dismiss. We’re certainly not completely the “land of the free”, just yet. But I do believe we’re getting there. And I think for those of us who raise children considered unique, special, differently-abled, now it might just be their turn, their time for the earth’s attention.
Their turn to have their differences celebrated, not denigrated.
Their turn to be treated with compassion, to consider kindness as their norm.
Their turn to shatter stereotypes, to be regarded as men and women, boys and girls, with gifts to share to a far more gracious world.
Their turn for free to be, you and me.
There’s a land that I see, where the children are free
And I say it ain’t far to this land from where you are
Take my hand, come along, where the children are free
Come with me, take my hand, and we’ll live
In a land where the river runs free
In a land through the green country
In a land with a shining sea
And you and me are free to be,
You and me.
It’s our Fourth Annual World Autism Awareness Day!!!
Don’t forget to turn your porch lights blue tonight!!!
THANK YOU FOR YOUR SUPPORT!!!
April 1, 2011
Autism Awareness Month
It’s the start of Autism Awareness Month today, with the fourth annual World Autism Day to follow tomorrow, April 2nd. I’d just like to thank everyone in advance for turning their porch lights to blue tomorrow evening (hell, you can do it the whole month if you’d prefer!). If you have no idea what I’m talking about, please refer here to a beautiful letter written to President Obama by Jess from adiaryofamom. No further explanation necessary!
I’d also like to say thanks as well to everyone who has contributed to any of POAC’s four upcoming walk-a-thons, the first of which is tomorrow, April 2nd, at Blueclaws Stadium in Lakewood. Looking forward to seeing you at the walk, and again, thanks for your support!
March 30, 2011
Wretches and Jabberers
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/
March 29, 2011
Gratitude Attitude
Today’s Gratitude Attitude is dedicated to all the people participating in this Saturday’s first POAC walk-a-thon, at Lakewood Blueclaws Stadium. My most heartfelt gratitude to all!
In anticipation of everyone’s efforts, I’d also like to say thank you in advance to those who will be turning their porch lights to blue on Saturday, April 2nd (read link here). Thank you so much!
April 16, 2010
Autism Awareness Month
April 2nd was World Autism Day (I know, my two autistic kids were home on spring break and I didn’t post to the blog, yet I was still completely aware of autism, trust me), and I’d just like to take a few minutes to draw our collective attention to a few groups of people who seem to get left out when it comes to recognition and appreciation. There is always a great deal of focus on the filmmakers, writers, celebrities, and parents who promote the cause, and all of that is of course, positive. Even though there are so many controversies surrounding the disorder, when it comes to autism, any news is good news in my opinion, as it continues to draw attention to the plight of autistic children and adults.
There are plenty of other factions however, the unsung heroes if you will, who have made and continue to make my sons’ lives, and the lives of thousands of other people with autism, easier and more fulfilling every day. There are the individuals who fought relentlessly for IDEA, the law which entitles my son to an appropriate education, in a time period when autism awareness was in its nascent stages. There are the parents and legislators, right here in my home state, who worked so diligently to pass a bill which will force insurance companies to shoulder a portion of autistic childrens’ therapeutic burden this year, for the very first time (although only a portion of the population is eligible to receive compensation, which does not include us.)
There are the teachers, aides, specialists, and directors of special education who tirelessly strive to accommodate the varying and disparate needs of all of their students on the spectrum, a Herculean task at best given today’s current educational climate. There are the many various national and local non-profit organizations that raise awareness and funding with which they aim to improve the lives of families impacted by autism. And finally, there is my favorite group, those scientists delving daily into the secrets of the psyche, teasing out the combinations of genes that create a susceptibility to autism, and the possible environmental triggers that perhaps make development of the disorder an inevitability.
I know, it’s not Autism Gratitude Month, but I am aware of the gifts these groups have made to our community, and many other people who deal directly with the effects of autism in their lives are aware as well. Sometimes we parents of autistic children are just a wee bit too busy to take the time to ruminate (or breathe, for that matter), and I just want it on record that I acknowledge, and thank, the thousands of individuals whose collective contribution has enhanced the quality of life for so many of our children, and our adult children as well.
Thank you, and let’s extend this attention shamelessly like I do my birthdays, and call this Autism Awareness Decade. It’s worked for me.
Autism Mommy-Therapist 