The Rapture Cha Cha Cha

On a temperamental mid May Wednesday afternoon, a new version of the Cha Cha Cha was created at the Arthur Murray School of Dance in Center Moriches, NY. The week was wet, the clouds hung darker and grayer than usual. An occasional exhale of sunlight provided a moment of relief, before sudden downpours of torrential rains jumped off all things of substance as though they were trampolines. We watched from under a disco ball while waiting for our Cha Cha Cha lesson. The weather stood in the way of most of our classmates, but Gabe and I are dancing machines, and we weren't going to miss it.......The music starts.....The teacher (aka Arthur Murray, according to Gabe) takes his place. There are 6 of us there, he stands in the middle and counts the beats...right foot front....cha cha cha.....left foot back cha cha cha.....

Gabe and I stand face to face trying to figure out our left from our right...I count along, guiding him.....And it starts.....the birth of the new version of the Cha Cha Cha, The Rapture CHA CHA CHA....ready?

Assume position, back straight, shoulders back, arms extended...

One two, Cha Cha Cha

Gabe: Will the world end on Saturday? Cha cha cha

Me: No Gabe Cha Cha Cha

Gabe: But they say it will blow up Cha Cha Cha...

Me: nothing will happen Cha Cha Cha

Gabe: I don't want to die Cha Cha Cha

Me: You are not going to die Cha Cha Cha

Gabe: I don't want anyone to die Cha Cha Cha

Me: No one is going to die Cha Cha Cha

Gabe: I don't want the world to end Cha Cha Cha

Me: you're killing my feet Cha Cha Cha...

Gabe: What if we blow up Cha Cha Cha

Me: We are not going to blow up Cha Cha Cha...Now travel Cha Cha CHa
Knock it off and focus Cha Cha Cha

Gabe: What can I earn Cha Cha Cha

Me: You can earn computer Cha Cha Cha.....

Gabe: Can I earn computer and not blowing up? Cha Cha Cha....

Me: Yes, you can earn both things Cha Cha Cha

Gabe: I'm hungry Cha Cha Cha

Me: Pay attention and travel Cha Cha Cha

Gabe: Can I earn computer, not blowing up and cocktail weinies if I do a good job with Mr. Arthur Murray Cha Cha Cha?

Me: Yes Gabe, now please focus on dance Cha Cha Cha.....
Now turn Cha Cha Cha

Gabe: I don't want to die Cha Cha Cha
I want to live Cha Cha Cha
Turn the Disco Ball on Cha Cha Cha
This is a party Cha Cha Cha...........

He remained unfocused and anxious the rest of the class.....

We drove home......

Where another version of the Cha Cha Cha was born......

It's called the Pinot Grigio Cha Cha Cha .......and it goes something like this.....

Assume position, Back straight, shoulders back, arm extended, pour into glass.....and RAISE your glass Cha Cha Cha.....

Here's the deal.....If I have to watch my "language" in front of children and limit my "french" to decibals only audible to dogs, then others should watch what they say about "world destruction" and "death" around my kids, Gabe in particular, because he does not perserverate over my 4 letter word choices, but he does over his mortality, and everyone elses. And it's endless. Just when you think he has calmed down, he's back up asking you the same questions all over again, cha cha *f*ing cha...A slip of the f word, ok, a well thought out creative use of the f word, is nothing next to the anxiety created by what the "D" word inspires the imagination to unleash.......I think "World Destruction" is a hell of a lot more offensive than any of Carlins famous 7 words you can't say on TV.....But that's just my *F*ing opinion......

Hopefully next week we will be dancing the "I Survived Salsa"...........

End the "R" Word

Mother's Day started out on a promise to be laid back and beautiful. A pre-Mothers Day celebration with my parents at a restaurant we love, followed by a warm bright lazy morning was enough to stretch into the day wide and slow, and feel the relief....but relief, in my world, is nothing but a tease.

It was supposed to be easy. A ride into a neighboring town for fresh bread, sea food, and Gabe's special bread, and then Gabe and I would finish off at our local grocery store for coldcuts and fresh fruit. Simple, right? It's never so simple.......

One of the employees behind the deli counter used to be Gabe's school bus driver when he started out in Just Kids, a Special Ed pre school. She would drive the bus during the summer program. Though it was years ago, he was only 4, she remembered us clearly. Gabe would get on the bus fully clothed and come off it completely naked. The matron spent the time collecting shoes and clothes and trying to get it back on. Gabe was non verbal at the time, and very hyper active. I was still trying to wrap my head around how to help my kid, and Will would wait for Gabe on the porch and run out to greet him the moment he spotted the bus. She remembered a flirty Carlos, seated on my hip, his wavy blondish tossled head of hair nestled in my neck , playing Peek a Boo through the strands of my hair...she remembered it all. I had filled her in on his progress, so when she saw Gabe, tall, fully clothed, handsome, loving, friendly and able to answer her questions, she was overwhelmed. She shared with a co-worker just how far he had come, and while we were all talking, the woman behind me snickered to her friend "if I had a kid like that I would have shot myself in the head. I could not deal with a retard."

Instantly I felt everything rise in me. I think the anger might just have lifted me off the floor. Luckily, the lady before me that was still being helped, realized lovingly, as real mothers do, that she needed to engage my son, who was holding onto a red ball, in conversation and steered him towards her husband who was an eyeshot and earshot away with thier daughter so that he could play show and tell. She instinctively took care of my child so that I could handle the situation accordingly. Her order awaited her on the counter, and my wrath was waiting to be unleashed on the "woman" behind me. I will preface this by saying that it is my nature to be flexible, easy going, to the point of dancing on indecisive. I am a big believer in underdogs, being one myself, and I hate the idea of hurting anyones feelings.......BUT.....when something so horrific is said, especially in the presence of my child, who could have easily heard her, about my child who was doing nothing out of the ordinary (even if he was it wouldn't have mattered), who was engaged and connected with people who were genuinely happy to see him, and enjoyed him, every primal motherly fiber of my being was going to attack harshly, mercilessly, and as profanely creatively as possible. I was shaking too fiercely to retain any type of composure. While I was able to verbally take her down, with reprimands also being offered from the employees who have watched Gabe grow up, and a few other moms on line who were also offended because they know and love someone on the spectrum, her hate shattered me. She is not unique. I have heard parents refer to thier childrens actions as "retarded", I have heard other kids toss that word around like it was a ball. Gabe has in the past come to me to ask if he was stupid. While I believe the kids that have grown up with him for the most part have been wonderful, he is asking for a reason, and I question what must have been said, or implied.


What people do not seem to understand is that certain words are really not ok to use. I am tired of the "PC" backlash. Not everyone can protect themselves and fight back without the sting of the stigma, because there is a classification involved. And quite frankly I cannot get over the arrogance, the sense of entitlement and the overwhelming ignorance of our society in general to think that people who have intellectual or developmental disabilities do not understand what is being said, and the intent in which things are said, so it's ok to continue to berate them. it's always the intention behind the word. You're a "retard" is meant to degrade and isolate. It is offensive. period. And those that think that people like me are ridiculous for taking offense to it, have never ever wholeheartedly loved someone with a neurological, developmental, or an intellectual disability. Period. Those people have never taken the time to really be involved in the day to day therapies and work required and the courage it takes, the spirit it takes for our loved ones to not only navigate in a world not wired for them, but deal with the preconcieved and prejudicial assumptions that hinder them more than any disability ever could. We all carry words that have validated our insecurities, we all know what it's like to have negative thoughts stop us from being who we are. I cannot understand the need to defend the use of this word. And if it's to be used again ( as I know it most probably will) to dismiss my son or any child like him, fair warning, I will not hold back. As shattered as that experience left me on Mothers Day, my resolve is that much greater. Please join the movement. Our kids are aware. Our kids deserve better. They deserve RESPECT, HUMANITY,ACCEPTANCE, PASSION and UNITY.

End the "R" word.......replace it with HOPE......

Simple

Beyond a Lens

The weekend started on a global voyeuristic note with the world swooning over a restorative royal wedding, and concluded with our President, always a perfect mix of dignified swag and elegance, earnestly confirming the death of this century's most diabolical clandestine terrorist by the hands of our Navy Seals at his command.

Nestled amidst the 2 polar events, my family, friends and I were gathered together on an endless grassy school yard under a warm bright sky to celebrate Special Olympics.

We were no longer virgins to this spectacular event. Last year, we were lost in awe, lost in the love the crowd gave the athletes, lost in the courage the athletes wore like medals, lost in the monumental feel of hope. Still on that high, we gathered our poster boards, loaded our cars, and caravaned our way down Long Island's highways and it's confusing streets. Needless to say, as the directionally challenged leader of this homage to gypsy travel, we were lost before we even started...but I digress...We found our way, and fortunately for us, as it turns out, Special Olympic time runs on Latino time......we are all fashionably late......

Anyone who knows my son, knows that he is one of the countless of kids on the spectrum with auditory processing issues and sensitivities. He has been anxious about having a Marching Band at the ceremony since last year. Though he had been told that perhaps there would be no Marching Band this year, my husband and I had been preparing him for the possibility, giving him options. Last year, Carlos walked with Gabe and they stood at a distance where Gabe wouldn't be affected by the noise. This year, the sight of tall feathered structured hats and glimmers of bronzed metal peeking over the backs of uniformed shoulders sent Gabe into cardiac arrest. Not to mention that there were 2 bands of bagpipe players and he had no clue the level of torment that could take him too...The panic in his eyes were rivaled only by the panic in his coach's eyes as he was trying desperately to reach me on my temperamental phone. Luckily, the promise of a long walk, an iphone to play with, earning of computers and cocktail wienies thrown in for good measure, helped Gabe compose himself. Master at negociations, my kid could broker union deals if it came down to food and fun.....yep, definitely my genes at work there....maybe if my genetic makeup was focus and success things would be different...but, again, I digress.....

During the walk my husband had the brilliant idea to give Gabe his camera. Gabe has taken an interest in photography lately. Every so often when I go to download pictures from my camera, I find interesting and intricate stuffed animal compositions in between the images of my sons. He has an very unique perspective, and is fearless with angles. We had gotten him a camera in the past (a simple Kodak) and in record time he broke it, so we decided perhaps he wasn't ready for it just yet. But, here, athletes rule, and there was time to kill, why not document it....so off Gabe went on his little adventures in between competetions and ribbon distributions, shadowed by siblings and which ever adult was "it" at the moment, and he took in the event.

The parade and the pagentary of local Special Olympic events are endearing. The hosting school makes a few announcements, local politicians, preferably one with a child with special needs, is moved to speak, art competitions are awarded and the school chorus sings...Banners are held high, paraders wave keeping thier arms in perfect V formations, local chapter of Knights of Columbus, Marching Bands, and Police representations appear with rehearsed precision....On the sports field, during competetions is really where true sportsmanship is highlighted. These kids and adults are cheered on along the way and they in turn cheer for thier own competetion. High fives, hugs, pats on the back, and a comeraderie that is rarely seen in the "typical" world, is innately embodied here. Everyone understands the work it takes to get to a place where despite the challenges of neurological wiring, chromosonal makeup, sensory issues, the environment, societies preconceptions, physical limitations, social skills issues, spirit is limitless, and it's in that spirit that we are all lifted. Here, during Special Olympics, we see it manifested communally, and it is celebrated openly, unabashedly, unapologetically...and it is reaffirming. What is equally important is the support we families recieve from our friends, our loved ones. I am profoundly grateful for the group of women I proudly call my sisters and my friends. They love my children, love my husband, and love me enough to embrace us, comprehend us, and come out to cheer with and for us in so many ways and on so many occasions. These are the women that when I confide my worries and fears, and I need to vent, do not dismiss my feelings when I am most vulnerable because they can't relate, they listen, they help me redirect myself, they make me laugh, and sometimes, even when words aren't spoken, the intent is felt, and it's always appreciated.

When we were all celebrated out, we returned home and Gabe handed his father the camera. The pictures were downloaded. We were left speechless. Gabe apparently had gone around asking people if he could take thier pictures. What he produced was a beautiful gallery of portraits, with some of the most expressive faces. Years ago I read an article about how children on the spectrum had trouble reading expressions and mimicking because of deficits with mirror neurons. Yet, my son, who we had to work hard on to achieve some type of eye contact (RDI helped the most with this) and who constantly asks you what you are feeling, loves portraits. It's apparent he has a gift for it. It's a love I share, I have always loved portraits and figurative work most of all. I suppose the less you feel you understand about people, the more intrigued you are by them. So, my son now owns his fathers camera, has taken it to school and has captured his classmates in the most natural and contemplative way. And I think perhaps for Gabe, a camera goes beyond a lens and it's his way to express himself, his way of communicating to us how he sees his world, how he approaches his subjects. Perhaps the clues to helping him stay more focused and connected lies in the angles he choses and the essence he captures......

Photo courtesy of Gabe's collection. His self portrait taken on May 1, 2011, in his 11th year......