John Travolta says the A word........

I don't know anything about Scientology. I don't know what it's like to be a celebrity, to be examined by a societal magnifying glass, or to have my privacy violated in the most intimate of moments. I don't know what it's like not to worry about how I'm going to pay my bills, or what it's like to live in homes, or vacation in places I couldn't wrap my head around it's beauty, or opulence.

But here is what I do know for sure. I know what it's like to love a child. I know what it's like to hold someone so tender, so tiny, so vulnerable and feel unbelievably blessed, profoundly grateful and joyous. That feeling of continuity......you, cradling, hovering, always cautious.....I know what it's like to want to create the best environment for your children, to want to make sure they are safe, they are healthy, they are happy......and I know what it feels like when your child starts to slip, and you begin to panic, and you take that child from professional to professional, and you spend hours filling out paperwork, looking through your calenders, documenting when a milestone was reached, and when it vanished. I know what it feels like to fall into a despair so great only your love for your child/children pulls you through. I know what it's like to not get the answers you need, to be in the midst of a mystery, and for every dismissive professional that really has no intention of looking into something further to tell you to institutionalize your child.
I know what it's like to pray for hope, because you just don't recognize it anymore. You lost sight of what hope should look like. I know what it's like to love a child the world might give up on, or think less of. I know what it's like to live with the fear that if something should happen to me, what will become of my special needs kid. I know what it's like to want to protect him from anything and anyone that could hurt him further. I know what it's like to demand that my child have a childhood too....
So while I don't know John Travolta, or his world, or his religion, I do know why he felt the need to protect his son.

Within the Autism world there was great criticism and debate way before Jett's tragic death on the way John Travolta handled his son's diagnosis. The Travolta's never admitted their son's Autism, they said he had developmental delays due to Kawaski Disorder, and he suffered from seizures. For those of us who love and struggle with our ASD kids, it was difficult to see something so obvious, and be fed something so different. A respected and loved celebrity like Mr. Travolta could have done wonders to help raise awareness sooner. The forgotten fact when you are so invested in finding ways to educate a public and get help for your kid is that every one is entitled handle this diagnosis in a very personal and private way. While it's human for us to have wanted Mr. Travolta to come out, it was unfair of us to expect him to do so. His son was diagnosed at a time when there wasn't the support there is today. A support bought about because so many parents were courageous, fought hard and never gave up on their kids or their place in this world. But our worlds are different, and they are parallel, and what he could afford to do to make sure his son had the best care, the best of everything, is not something that most of us are privileged with. So we have to keep pushing and keep demanding our childrens rights be met. That's our fight, and whoever wishes to join, is always welcomed and appreciated. However, those who prefers to handle things more privately should be respected.

My heart breaks for this family. The absolute love between father and son, the gentle way they held each other, is clear. While we let go and bury many dreams and visions of what could have been, what should be, when we receive our diagnosis, the Travoltas ultimately had to bury their son.

We fortunate ones, who can cradle and hover over our sons and daughters, need to kiss and hug them, and then get back to work......When our children age out of the system, it's a whole new world, and those that want to see change for the better, better start demanding real change......

Walking around the Neighborhood....

Picture this......it's 9am, all the kids are gone and I am heading out the door. I have the official walking uniform on, the ponytail is hanging, sweats, sneakers..check....this shirt, the one in the picture, my favorite shirt,( yes I'm serious) on and the dog is on the lease.....we are walking....we are moving...blood is pumping through those veins....I'm imagining the heart getting healthier and the excess weight burning off.... I get to my mailbox, I come across a neighbor...........

"Hey", she says," I have always been meaning to ask you, where are you from?" Now, I have been living in my home for close to 12 years, and it took about 5 of them for this woman, and actually most of my neighbors to even approach me, but, because I am so open, I was a bit confused. "Where am I from?" I ask. "Yes, how did you get here"...Now I understood...."Long Island Expressway" I say, playing stupid. "No, I mean how did you get here from where you came from".... LIE is the right answer, I was born in Brooklyn, grew up and lived in Queens....but, it was time to have some fun with her.......
"Oh", I say, "well, I got here the same way lots my people get here, inner tube. The Banana Boat was so early exile......The plan was to wash up on the shores of Miami Beach, but, everyone knows I'm directionally challenged so I made a wrong turn and ended up washing up on the Long Island Shores". "I had no idea," she says to me, "it must have been grueling with the sharks and all. Was your whole family on that tube?"....This is where I lost it and couldn't stop laughing...I invite her to walk with me and we go on......

On this walk we begin to learn a little more about one another. She tells me the Island has always been her home. I am a borough girl through and through, but her home has always been lined with ocean shores and very distinct boundaries between locals such as herself and the part time residents whose physical presence is pronounced from Memorial Day to Labor day but whose power in those moments of absence are profound. She confides that when she married young she believed in forever, but after her husbands affair and subsequent divorce, she was frightened to death of the thought of being alone. She spoke lovingly of her children, and how now that they are older she enjoys a whole new kind of relationship with them. She misses having little ones.
She is starting to venture out and meet people, but in her forties, she has found she is pretty set in her ways. She is very religious, very Christian, and very critical of evolution, she believes in Intelligent Design. Needless to say, she didn't think my shirt was hilarious as I did. She is a very conservative Republican. She is against Gay Marriage, Immigration, pro choice, and is pro NRA. She hunts. She does not believe the reality of Global warming, to her it's scare tactics by liberals.
People, I live on an endless block, you'll be amazed at the things you can talk about just getting to that corner......
And still she took a walk with me knowing that I am an Obama supporting, tree hugging, animal loving, evolution believing, everything questioning, equal opportunity thumping, all embracing, Pro Choice, pro Gay Marriage, vegetarian, who not only believes in the very reality of Global Warming, but feels that we all have a responsibility to take care of our planet and be kind....We didn't yell, we didn't argue, we didn't call each other names.....She was still a mom, like me, we loved her children and finds herself struggling to let them go. She was still a woman who was mourning the loss of a marriage, the loss of an ideal, and is just beginning to allow herself to start living life again, but on her terms now, not on some fantasy of forever. She was still a woman who needed to hold onto something solid to guide her through the chaos, and that was her very conservative views, and her faith. I understood that, and could sympathize with it. We are neighbors, between 2 polar opposites, there can be a common ground.

As we were approaching our homes, suddenly she said to me, "you know who you look like? Gloria Estefan." "You think?" I say playing again..I get that often, whenever anyone asks me what my background is and I say Cuban, they always say, that's right, you look just like Gloria Estefan......"They are powerful people, the Estefan's, you know" she says to me. "They are talented and they have so many things going on. They are self made, hard workers, intelligent, totally different from the others that come over".....and there, with that sentence, you have it. I choose to find common ground to get along, and am happy that she can even recognize that there can be positive role models, but it's that token status again......and that's what's disheartening.
" I know they weren't born here like you, did they come over on an inner tube?" "No, they didn't", I reply. "Some decided to take the easy way and get here on an airplane". "Well, it was really great talking to you. I can't believe we've lived so close all these years and never really got to talking before" she says. A neighbor just then drove by and said hello, the bumper sticker that was on his car read "Obama 08, White Guilt"....and she said as he moved on "I love that bumper sticker, I have to get one. Don't you think it's great?". "As great as you think my shirt is", I say, as I turn around to walk towards my porch I say my goodbyes and move on. She says" lets go walking again soon".....I say "sure" finding common ground shifting......
I can understand different points of view, I can understand different political ideologies.
I cannot understand racism, prejudice, sexism, misogyny.....
But the common ground has to be a starting point to open conversations.........
We walk for awareness, cancer, autism, diabetes, lupus,etc..... there is always a walk....
Why not walk for understanding......maybe we do need to walk together more often.......
Maybe design a few more shirts for the occassion......"Left my Inner Tube at home"......
"Hello, my name is TOKEN"........"Be the Exception, not the Excuse"......."Common Ground is better than Under Ground"......
To be or not to be?.....what are you?.......where are you from ?.....how did you get here?.............
I ask this of myself all the time.......and then I have a drink........
I need to walk it off................

Window paintings......

Until my junior year at NYU, I knew Yoko Ono only to be the controversial wife of John Lennon. We were required to attend her show at a SoHo gallery. I had no expectations what so ever. I had heard her work described as Dada, others called it Avant Garde, I have heard her say she wasn't aware she was anything but herself....Having not seen her work previously, I went into the gallery thinking I had an open mind, once inside, more than my mind was opened. It changed the way I saw everything.

Her infamous art work, "Play it by Trust", a large white chess board with all white chess set, was displayed in the center of the room. On the walls, hung pieces that, were it not for thier titles, would have been easily overlooked. Amazing how words change everything. There was a knotted rope on a wooden board titled "To be Appreciated when Broken".....a group of skelton keys hung on indiviual hooks, "Keys to open the Skies"....and then there was a glass window pane that rested beside a tag that read "Painting made by the Night".

For years, every time I looked out the window, I thought of the frame which holds countless of paintings created by the life on the other side of that glass pane, and the balance of the lives lead between these walls. The past 12 years I have watched my children crawl, walk their first steps, ride their bikes, get on their buses, come back home...I have watched the colors of the seasons, trick or treaters fill my porch, the white snow fall deep,the sun come up, the sun bow down, the stars multiply at night, the silhouettes of the windchimes, the baskets hang full and cascade like waterfalls of flowers.... and for just a few precious times, I have watched my grandparents pull up to my driveway and come to my door....and I remember from the outside looking in, my husband waiting for me by that window to get home, and I, immediately knowing my grandfather had passed by the sadness that shaped his stance.

Last night I sat with Clementine. The Clementis that outlines and drapes my porch casts shadows that reach in and climb my walls. I rest my head up against the ledge and struggle to quiet my thoughts and just be. I wonder what must have inspired Ms. Ono, what could it have been to see that clear pane as the perfect transparent canvas.....could she have thought all life is art? Could it be that true translucency can only exist within the moment? That capturing it on real canvas with paint is only the art of illusion? That what is real is Art? That Art is found in the moment? That being present is Art? Could it be that how we view the world around us is ART? That there is Art to living? That there is Art to interacting, That reflection is Art? That there is Art in just being? Could it be that while her husband thought that "life is what happens to you while you are busy making plans" she might have been thinking Art is what happens to you when you are experiencing life? That if Art = Life then Life= Art....
I think back to my art history classes, to Marcel Duchamps and his urinal, his Large Glass, his bicycle wheel, and his love of chess, how he quit making art to play chess....and his piece "portrait of chess players"...and I begin to see the influence....The DADA movement was coined the anti art movement. I never really felt comfortable when I was young, with this art movement because I had such profound respect for the craft, the artistry, the mastery....the thought of stripping it down and questioning what is art was scary for me. I didn't think I understood much of anything to really question to that level.....
And then life happened while I was busy making plans, and then I was left to question everything, and try to find the sense, the humor, the connections, the humanity, the art in life.....
Then it hits me, anti art is an impossibilty. There is art in everything, and in everyone...craft is important, mastery is important, but questioning, contemplation, experience, committment, expression, love, perspective, it's all equally important as well...you need to know and understand your material, and your limits.....Art with all it's layers, is still incandescent.

Perhaps the best way to walk into the room is without expectations, to be open to the experience....
Perhaps the best way to view a painting of a night sky is to look out the window............
Perhaps the best way to see keys is as the means to open the skies, and
perhaps the best way to see Art is as a means to open the mind............

Play it by trust, to be appreciated when broken..........

My MOACS

The journey between suspicion and diagnosis is isolating and frightening.

The withdrawal of my child into his own world induced the disconnect between myself and the life that I had envisioned. Everything changes, Autism is that invasive. Even things you thought would remain constant change. Sometimes, surprisingly for the better, but more often, not.

To those newly christened into the Autism community, one word of advice you will not necessarily find in books, surround yourself with a strong support group of friends who have children on the spectrum. Embrace your fellow MOACS (moms of autistic children). I wrote an article about this a few years ago for an Autism Magazine, TAP, and I tell you this is perhaps the most important piece of wisdom I have to save your sanity.

These ladies are my MOACS. They are the ones that understand what a bad day really entails. They understand the depth of despair, and the love needed to find your way back. They understand the silences, and the twisted humor that luminates those dark moments. When the children tantrum, rage, meltdown, their hearts find balance between the frustrations of the child, and the fragile nerves of the friend at wits end. They understand the battles fought in between the tables during CSE meetings, over the phone with insurance companies, behind closed doors with spouses, or with doctors who refuse to pay attention to a mothers concerns. Throughout it all, they coach, they advise, they research, they instruct, they draw out their own experiences and give you ideas, encouragement, information, and restore your faith so that you can continue to be the parent your children need you to be.

The power of friendship. Social Skills, my friends, social skills.......

Today I held a MOAC lunch at my house. One of the ladies was vacationing, hopefully having the best time with her family on the "happiest place on the planet"...The 3 of us that were left behind however, spent a few good hours laughing hard, eating well, and reconnecting.

The journey from diagnosis on is challenging. But along the way, in the most unexpected places, I have been awed by so many moms who are as unique as the children that inspire them. Talented moms who have used their creativity, compassion, love and intelligence to humanize the awareness movement, in their own way, and in the process remind everyone we are all worthy, we all deserve a chance to reach our potential..I have had the great fortune of expanding my circle of friends to include moms whose enthusiasm and energy have motivated me as much as a jolt of Cuban coffee, hard core Cuban coffee....Who lovingly push me out of my comfort zone and make me try new things....I am no longer isolated, and while there are still fears, I have hope, simply because I am in the company of strong, loving, intelligent, innovative, insightful, passionate, hilarious, gracious women. Beautiful.

The power of loving a child.

Art & Fear

I'm at a crossroads. Would be nice to have a sense of direction, would be nice to be able to tell my right from my left. It would be nice to have an innate clue.

For the past 7 years I have had to let go of my fierce shyness and become the voice for my son. Autism requires that. I have had to let go of everything I thought to be true because I was told it was so, and I had to begin to think for myself and question, thoroughly investigate, research and more importantly, follow the sources and monies in order to begin to weed out what is in my child's best interest as opposed to, some other institutions.......While both my son and I grew in the process, he, acquiring language, I acquiring a backbone, there were parts of me that lay dormant......it appears the bears are coming out of hibernation.....

I struggle with self doubt. I have always been incredibly insecure and unfortunately, it hasn't really worked for me....haven't been bright enough to use it to my advantage...I watch moms go back to their former careers or reinvent themselves brilliantly because they have an idea of who they are....Me, I'm notoriously all over the place, always have been. In the book, Art & Fear, that I am currently re reading, hoping the 30th time is a charm (actually it's a fantastic book, should be on Oprah's reading list)...there is a quote that goes "A piece grows by becoming specific"...I'm screwed....this is the truth....both that I'm screwed and being specific is key, even when the specific is subtle....or subjective....learning to become specific would mean learning to define myself as an Artist, finding my voice...I still feel like I'm trying the word on for size, and getting lost in it..... not quite knowing how I'm supposed to be wearing it......Not quite understanding how to "work it", make it my own.....

I struggle with extreme perfectionism when it comes to my work...again, screwed...."Your perfectionism denies you the very thing you need to get your work done. Getting on with your work requires a recognition that perfectionism is paradoxically a flawed concept"..inevitably I get frustrated on so many levels....I used to think it was because it just wasn't up to par, it wasn't what I had in my head, now I'm starting to understand it had nothing to do with my vision, but everything to do with my voice. Again it comes down to my voice. It comes around full circle. A complete sensory experience. Vision is always stressed, but without the other senses equally present, how could the piece be truly expressive? I need an Art backbone....I'm frustrated because I know I'm not where I should be. I know I'm not evolving as I should be when it comes to my work. I know I'm still worried about how others will receive it, I know I'm still worried that I will only be as good as the pieces I create. I know I have my limits, and though I push beyond them in just about every other area in my life, here I'm left at a crossroads......

It would be simple to say, just do it, keep painting, draw, write whatever, "just do it"...ala Nike,
"be present" ala Eckhart Tolle....."Just breathe" singing Faith Hill....."just drink the Kool Aid"...Jim Jones....But it's not so simple.......

"The answers you get depends upon the questions you ask" Thomas Kuhn.....

I need to start asking myself some serious questions.......

And start answering them in color...........

Shit happens.....life happens.....Art happens......and I still happen to need and want to believe in something.........

So I'm off to think, and to paint.................
but I still have my fears................................................................................................

Little Boys Blue are going to be blowing their horns....

Christmas officially came to my house the year that Gabe began to not only understand Christmas, but also was verbal enough to dictate his first Christmas list to Santa. He was 5 years old. What he requested came as no surprise to us, it was all musical instruments. My son loves music, and despite all his sensory issues with loud noises and certain pitches, his connection to the thump thump thump of the drum bought him closer to us with each beat. It is undeniable, the Ricky Riccardo babaloo gene is alive and well in Gabe.....

Well 4th grade is band year. For the first time the kids get to pick band, and guess who tried out for it....Gabe and Carlos.....and guess what instrument they get to play, take a wild guess....yep, the drums...just kidding, it's the trumpet...My own little Louie & Miles.....

Now, while the inevitable amount of noise that these children will blow out of what I'm hoping are just horns, is not something I'm looking forward to, the thought that my son will be on stage with his brother and other students playing a musical instrument alongside of them, thrills me.

I live in a bit of a parallel universe. I suppose every mom who has a special needs child and other typical special children can relate to this. While you are thrilled, enthralled and relieved every time your typical children meet milestones, every time they shine, every time they make a friend, or join a club, or dream new dreams or just sit with you and talk about their day and what they did, you're heart breaks a little for your special needs kid because the experience is so different. I don't want to take anything away from the privilege of raising Gabe, but I have had to embrace a whole new way of envisioning what a milestone really means for Gabe, and let go of any chronological marker, or any deep seeded wish that maybe one day he could catch up. I have learned to focus on one day at a time. While I can honestly say not a day has gone by where I didn't wonder about what Gabe was thinking, how Gabe was processing the world around him, what he felt, what it would be like to be him, I am grateful that little by little I have been having verbal and non verbal conversations with him, as simple as they may appear...That we could sit together, that we could laugh, that we could just be..... Sometimes I envision what it would be like if my parallel universe could perhaps cross over and exist as one for at least a moment in time.....and then Gabe joined band with Carlos. If all goes well, maybe, just maybe on stage with trumpets in hand, my universe could meet in the middle. But, in the meantime, there are trumpets to get, work to be done, lessons to learn, ears to plug.....

Without a doubt there is a latin jazz beat taking over my heart......percussion, clarinet, piano, the Afro Cuban rhythms that seize the body and then releases it to total abandonment on a dance floor.....and then there's that trumpet.....Arturo Sandoval....music that not only lifts spirits, but twirls, shmies and shakes them as well.......

Who am I kidding, Arturo Sandoval....I'll be lucky if they get the right end of the trumpet in their mouths......and that's hoping it'll go in their mouths....Carlos will do just about anything for a laugh.....Lord help me.......

Behavior modification anyone????

Apparently we need a new position in this administration. We need a Behavior Specialist, one who can devise a national plan that we can use to modify the incredibly rude, arrogant and self indulgent behavior that we have been witnessing lately.

For those that do not have a child with special needs, a Behavior Specialist, a BCBA is called in when behaviors are coming undone. A FBA (Functional Behavioral Assessment) is done and a plan is put into place to help redirect and correct bad behaviors.....

For example, if a child on the spectrum threatened a teacher the way Serena Williams threatened the referee, in the real world of Autism, that child would have been put into either a restraining room (referred to as a quiet room) or would have been restrained with force. There would have been calls sent home, an assessment made and if the child is on meds, a call to the doctor and a re-evaluation of the meds taken. There would have been new goals set up, there would be a renewed emphasis in the reward system, there would be social stories.....
Serena was fined the maximum penalty, but despite poor sportsmanship can continue to play...and we are left to explain to our kids why that type of behavior isn't becoming.

If a child on the spectrum yelled out liar, lies to a teacher in the middle of a lesson, again, a child would not earn the reward they are working for, they will be given a social story about the incident, will have visual reminders of the rules of the classroom on hand. They will be given a stern warning, but having lost the right to earn a desired activity, it is that punishment that will sit with them. Senator Joe Wilson, in the middle of a Presidential Speech on Healthcare, a very important topic for most of us, decided to show the complete disrespect he holds for the office of Presidency and for the American people by heckling President Obama. No social story given to him, no losing a desired activity, no consequence, and no remorse. Amazing....

Now, if my son, for a second, got on stage and took the mic away from someone who had just won an award while she was giving an acceptance speech and went off the way Kenye West did, oh boy would he be in trouble. He would definitely not earn, he would definitely be reprimanded, there would be social stories, visual cues and reminders put into place, the communication book would be smoking.....Kenye did get booed, he did get ripped, but in the world of entertainment, where the only bad publicity is no publicity, you have to wonder just what gets done to shock, what gets done to stay on everyones minds, what gets done out of true passion. What is clear is that there is a total disregard and disrespect towards the art itself when this takes place.

Our expectations of the behaviors of those that have severe neurological & sensory issues are very different from the expectations we set for ourselves. Obviously we set these standards way too high for one segment of the population, and not high enough for the other. Our kids have to cope with real disabilities that challenge them constantly, and yet what we demand of them no longer holds true in the real world. How are we supposed to teach our ASD kids social skills when social graces are no longer valued? When they are not returned. We teach them to respect others and the favor is not returned. There are no real consequences to bad behaviors when it comes to typical kids or to celebrities, or authority figures of any kind, other than a boo or a look of disbelief. Yet, when our kids act out in a store, any mom with a special needs child can tell you we have gotten the looks and criticism thrown our way........

So here is what I propose....Everytime a Senator disrupts a President, I don't care if the President is a Democrat or a Republican, we hold the Senator accountable for his actions. There is a time and a place for a debate and if they weren't on vacation for so long, or gone campaigning most of the year, perhaps they could be present when session is on so that they could take up their concerns in a more respectful and thoughtful manner. Senator Joe Wilson, there will be a social story about manners and interrupting on your desk, along with visual reminders...you do not earn. The monies that lobbyists will pay you to support your re-election campaign could be donated to help fund...lets see.....how about Autism research, Alzheimers research, cancer research...or wait, what about healthcare....brilliant, it could go towards a Universal healthcare fund.....

Everytime an athlete, especially a well paid role model, throws a hissy fit and verbally threatens someone because they do not agree with a call, there should be a time out. You should have to sit out a game. You should also get a social story and visual reminders. You should not earn and the fine paid should go to a Boys and Girls club.

Everytime someone gets on stage and takes someone elses moment to shine away from them, they should be banned from award ceremonies for at least a year or 2. They should have to donate monies to the charity of the person who they disrespected. They too should get a social story and be put on a behavior modification plan. Sensitivity training to the max.

See the pattern? Social story, break it down into simplified small steps. Raise standards. Teaching respect falls short when all of this is dismissed within a few days....The lesson the kids learned lasts them a lifetime. The shock wears off and next time, it will be worse. Freedom comes with responsibilites. You have the right to voice an opinion but you do not have the right to be offensive about it. So how about a national "cuss jar" except it could be a bad behavior jar....and the penalities paid will go to do good....therefore consequence could turn into something positive.....And maybe somewhere down the line one way or another respect could be returned....

A Day at the Beauty Salon......

With ease she moves across the salon. A modern day Moses, a sea of hair parts before her, as she makes her way to her chair. An accent thick as the Vodka native to her country, invites me to sit.

We talk through mirrors. She lifts my hair and examines the complete and reckless abandonment, the damages of the sun, the wait between cuts. All the time, I, one eye peeking through the wet strands, am awed by the way she manages to tend to her femininity, her chaotic schedule, her four kids, her husband. She finds the time to outline her large brown almond eyes as Cleopatra would. Her lips glossy, the rouge on her cheekbones, perfectly blended.

I've seen this type of confidence growing up in Queens, in the many different immigrant homes I visited. I have seen the way so many of my friends moms followed beauty rituals that L'Orleal or Oil of Olay could not compete with. Somehow, we get lost between the pages of magazines, the images of celebrities and models photoshopped to perfection, and we lose connection to those rituals....assilimilation.....easy to tell the difference between us. Here I am, daughter of immigrants, dishelveled, and trying to make sense of what to do with what I have and where I should put it...and there before me is a salon filled with women who immigranted years ago, scarves tied around thier necks, heads, handbags, bangled up, beautifully manicured, and put together.

She smiles at me and begins:..what color do you want to try? What kind of cut do you want this time? What are you thinking? Useless, I never have an answer. I come unprepared. Ok, she says, I know what to do...as she turns to go get her coloring ready, she pays compliments to just about everyone. Some are given in Russian, and some are in English, the ones I can understand are basic....that color brings out your gorgeous eyes.....no darling, you are not getting older, you are getting better.....you have great skin.....love the way that cut looks on you...a warm pat on the shoulder, a sincere smile, and she continues on her way.

When she returns she tells me stories of growing up in Russia, her classical music training, she asks me what I want done with the boys hairs while we wait for my color to set. Again, I have come unprepared....keep it long I guess, but with shape....she returns victorious, 3 boys, less hairy, faces open to the world, somewhat more defined.

As she cuts my hair we speak some more. She says, "I always tell you, you need to put some effort, you are a beautiful girl"...."Girl? I'm 42, I say"...She says "you have great genes, you don't look it"..."Ah...the compliments" I sarcastically reply...stupid, considering she has scissors and my hair in her hands......."I'm in the business of beauty, but this is what I know....giving real compliments is like feeding people, it nourishes them and when they are nourished, they are healthier and happier. There is always something positive to say. And if you think about it, if they feel better about themselves after I finished, I look good too.....I did my job well. Take the compliments, and instead of rolling your eyes, look to find the merit in it.....The business of beauty goes beyond hair and makeup.....you have to work with what you have. You have to enhance what is there."

Feeling silly, I admit she is right. I always blame time restraints, lack of energy, or use the totem pole place of where grooming and appearance fit into my life and the "but just how important is it, everything else is so much more pressing" excuses......while the truth is yes, I am tired, yes I have very real responsibilites that outweigh any nail polished or eye shadowed.....Still, it's about the time spent on tending to a need that has to find it's space in my day. There should be no reason that I can't spend a few minutes laying down with a mask on my face every once in a while....or why I can't take 5 more minutes to put some blush and mascara on....maybe I can remember the scarf without having a friend remind me, or actually run a brush through my hair instead of shaking it and running, then pulling a pony tail holder off of my wrist and haphazardly wrapping it around my hair.....

Grooming is primal after all , she reminds me, look at the monkeys and gorillas........
Sounds good to me...now where is Bubbles......I'm thinking a chignon would be nice........

Choosing to Remember

William came home with homework today. It was English and he had to do an exercise where he had to brainstorm and write out words, quotes, images, anything that would make him think of CHOICE which was written in the center of the page encased in a bubble.

CHOICE. Choices. And so he began....decision, pick, "ask not what your country can do for you, but what you can do for your country", "some men see things as they are and say why, I dream things that never were and ask why not", "to be or not to be", crossroads, belief, life, black or white, right or wrong, peace, war, love, hate, tolerance, acceptance, heart or brain, contemplation, trust, education, profession, arts, freedom, truth......and then he got overwhelmed, and decided to call it quits, another choice...consequences......

September 11,2001, I, like my fellow world citizens watched in horror as our beloved city was attacked. I could not breathe. All I could think about were the thousands of lives that were being destroyed at that precise moment. I watched the bodies sail through the bluest of skies in complete disbelief that this could actually be happening. No special effects, no movie script, no cut and scene. In between a sunrise and a sunset our country was undeniably altered in the most profound of ways. The violence, the violation, the inconceivable act of hate and destruction left so many of us aghast and silent. Shocking. Still, 8 years later, there is a part of me that remains silenced.

But then came the exercise in CHOICE. I can't help but think of all the choices made since that day that greatly affected the whole world. I think back to being told that choices made in desperation and in fear, never turn out well. I think of the state of this country, the trust put in our leaders, and mistrust we had in our security, in others, I think about the complete polar opposite states we lived in, defend freedom yet censor, be tolerant yet the beatings given out to anyone that was considered Muslim seemed daily for a while, return to work, to "normal" life and there was the color coded chart of alerts that we all had to live by. In NY, and I am sure the rest of the world, things were now defined by life before 9/11 and after 9/11....kind of like BC/ AD.......And it was understood that there had to be regulations, for our own safety it was critical, but somewhere the balance was lost.

I don't think we even begin to acknowledge the enormity of what occurred until we start really thinking about the consequences of our choices. I don't think we get to really grow as a nation until we start choosing to go beyond special interests and start really thinking about how we live our lives and how we treat each other, even beyond borders. I think if everything comes down to a choice...it can be built up by choice too. I remember a time when if anyone said anything remotely against President Bush, they were called unpatriotic, here, in this land of freedom of speech. Now if President Obama wants to talk to kids about the importance of education he is called a Nazi with a hidden agenda. Choice. We could choose to work towards recovery. We can choose to help our communities. We can choose to rise above our circumstance and teach our children perseverance. We can choose our battles and we can choose peace.
We can choose to be better. We can choose respect. We can choose education. We can choose health care for all. We can choose research, science, arts. We can choose kindness. We can choose tolerance. We can choose to open our minds a bit more. We can choose to think outside the box. We can choose to have faith. We can choose to hope. We can choose to reach out. We can choose to pay attention. We can choose to be present. We can choose to compromise. We can choose to listen. We can choose to stand up. We can choose to be world citizens, we can choose to be aware and involved American citizens. We can choose to be bipartisan. We can choose patience. We can choose to be accountable. We can choose peace. The choice is ours, on a daily basis, with every thought, with every action. But if it remains encased in a bubble, what happens when it pops?

What have we learned in 8 years? Gone but not forgotten? The lives that were lost that most harrowing of days are worth so much more than just that. How about honoring who we lost, what we lost, by attaching a positive word to choice and enacting it. The freedom to choose......the choice is yours........

Here Comes the BUS!!!!!!!

Sweet sites were rolling down my street today.....Who knew a long yellow bus could produce such excitement! (ok, minds out of the gutter please....) Like chocolate on wheels I tell you....

The bus stop is where you can tell the newbie parents from the tattered veterans....The newbies are there with video cameras, all weepy eyed...(yes, I was one once too)....you just know little notes of love and encouragement were slipped into their kids lunch boxes.....hearts breaking, kisses given, personal escorts to the bus door, waving hysterically like a coked up beauty queen winner until the bus rounds the corner......newbie......sweet, but oh so naive.....
Tattered veteran....well......
Here's what those of us whose number seems to be on the schools speed dial do; those of us who, when looking at the caller id thinks "Lord, who did what this time, or who has what this time, or who needs to be evaluated for what again...." Those of us who have considered sending our kids with t-shirts saying "I'm sorry, in advanced, for what I'm about to do to you all year long"........or considered wearing t shirts saying "my child gets his bad behavior from his father's side" to the parent teacher conference......here's what we do........or at least what I do and I have witnessed a few other neighbors do.....We patrol the area for the bus..(mind you we don't care what we are wearing or not wearing)....We start screaming "the bus is coming, the bus is coming". We then proceed to make sure that child is front and center for that bus to see him/her and Not pass them. As soon as the bus pulls up we, flashing our colgate smiles and them some, praise whatever God or Saint comes to mind,
dance in place (insert dance of choice, cabbage patch, stanky leg, running man, etc, etc) and do cartwheels all the way back to our front door, and snap the picture of the kid getting into the bus for visual proof of the occasion, just in case you might think it was a figment of the imagination...
Mind you, if there is a note in the lunch box it would read "Behave or Else"....there are no tears, have a good day is actually yelled while mid air doing the cartwheel....and the video camera, well you can't video tape and do acrobatics at the same time because Lord knows we are not in our 20's anymore, or are Paris Hilton.....there is a quick wave at the end, more like a salute and a "see ya".....Exhale, breathe in, breathe out, and catch up begins............

So there you have it, the first day of the school year for us, and not a phone call from school today (knock on wood)...Maybe that is a good sign.....or maybe I need to continue to take things one day at a time and stop getting ahead of myself.....

The bus came, the bus finally came!!!!!! YES!!!!!! And the best part is....it'll come again tomorrow ......Sweet sites rolling down my street....the yellow brigade..........aahhhhhh......

How much longer?

Today is national "How Much Longer Day" for Autism. The National Autism Association has declared today a day to write to our President, his administration, lawmakers, health agencies, department of education, the media, asking yet again for safer vaccines, federal laws to protect our children from excessive and dangerous restraining practices and seclusion room practices. There is a need to acknowledge Autism as a national health crisis.

And yet, with numbers like 1 in 100, and millions of Americans afflicted with this disorder, Swine flu takes precedence, and a rush to a find a vaccine that would work with no research, no data, again finds a focus. How does this happen? I understand that there should be coverage, we should be taught how to protect ourselves, cover when you cough, wash your hands frequently, don't send your child to school if she/he is sick, bump up the vitamin c, eat healthy foods, etc, etc.....but these numbers that swirl around....and when your child is the statistic, it's a whole other ballgame.

Here is my truth and the truth of all of us who have children on the spectrum. Health insurance coverage is non existent for the treatments and therapies that have actually helped. Many of our DAN doctors do not take insurance and they are extremely expensive. Many of the specific blood tests and metabolic tests that have to be sent out of state are not covered by insurance. The vitamins and supplements our kids take are also extremely expensive and not covered by insurance though there is data out there proving how life changing they have been. The weighted vests, the weighted blankets, the trampolines, the makes shift sensory rooms that we try to put together to help with their sensory processing dysfunctions, the listening programs, the therapuetic extra curricular activities we put them in all are costly. The reading programs we seek out are thousands of dollars. No insurance coverage, no help.

When it comes to the school districts it is scandalous how many have had to sue their districts just so that their children can get they are rightfully entitled too. To be fair, many school district are just not prepared for the influx of special needs kids, not just kids with Autism, but with other neurological issues as well. How can we not see that there is a problem here?

Health care is a moral issue. Our environment is a moral issue. The way we treat those that need our help the most translates into a moral issue, just like it was a moral issue when we were fighting for civil rights and womens rights to vote....It's a moral issue. When watching the news, every time I hear someone say that they don't want the government to decided who lives or dies, that they are afraid "grandma" won't be allowed to get the medical help she needs, I absolutely cringe. Any parent with a child on the spectrum, or a child that has needed cancer treatments or anything that could interfere with a profit that investors would like to see, knows that the denial letter is in the mail. Health insurance companies for a very long time have been playing God. Just like God is played every time there is a war declared.

Universal Healthcare is an absolute need, but what is also needed is for our overlooked children to finally get the respect they deserve as human beings, to get coverage too. What is needed is a recognition that there is a great problem here, and that it goes beyond just a medical issue, but it effects an entire life, from start to finish. If our government, the department of education, if the CDC, if the NIH, if the medical community as a whole continues to ignore the enormity of this situation and continues to turn a blind eye, I can assure you that will be the economic demise of our country. These kids are getting older and the only way to make sure that they get a chance to be a taxpaying citizen, is to give them the coverage they need, fund IDEA fully, help make available the services to help parents be able to juggle the massive responsibility of taking care of their kids with the equally massive financial, emotional, psychological, spiritual demands made on us. We have been pushing every way we know how for the longest. We have grassroots organizations that started off with parents putting their all into creating something that will benefit their kids and that have become great advocating associations/societies/ foundations..
We are a community of reach and promise and in constant search for answers and for ways to help our children live more meaningful lives. When we ask, now, how much longer, please, please give us an answer. It's a moral issue here.

Labor Pains......

I was born in the Spring, but there is no doubt that I am a child of summer. Somewhere in my DNA, there are palm trees and ocean shores deeply intertwined within my genetic makeup.....
I suspect that would make me genetically predisposed to summer in the way that many suggest my son was predisposed to Autism...(sarcasm)....but the therapeutic effects of the ocean kissed air, the sounds of the waves against the shore, the sun that rubs up against your skin like a first love, making you feel young again, are soul soothing...

Labor day is bittersweet for me. While I'm ready to send the boys off to school, I'm not ready to see the summer refashion itself into autumn.....I'm not ready to let it go. The sky is at it's most spectacular in the summer....every hue of brilliant blue taking turns as the days deepen....the warmth, the sunshine, the complexion of summer..it's abounding colors everywhere, on the leaves on the trees, on lawns, flowers hanging from porches, outlining driveways and walkways......the farm stands....the kids on their bikes, on their skate boards..my kids jumping into the pool, into their childhood, full force, cannonballing it......It's not that I'm ever really ready to part with it, but with each passing year I find myself craving my season more...trying to hold onto youth? Onto it's palate? Onto the levity, or onto it's indulgent ways???? For whatever the reason, it doesn't slow any of this down. School life resumes, and September will be June before I have even digested the in between....and I would have gained another 12 pounds with that alone.....

I need for time to move slower. I need to be able to hold onto my boys longer. I feel it all slipping so quickly, too swiftly to make much sense of it at the moment. I thought at 42 I would have had a clue by now....but I should have known better, what with being clueless at 41 and all....It's not so much that I expected to catch up to time, but I was aiming for at least being in the same vicinity...at least the same zone...

I suppose I could make peace with the fall......but in the meantime, there are a few days left....like Sheryl Crow, "I want to soak up the sun"........and make the most of what we have left.......

3 days till the bus comes...............................................

I Can't Quit You......

This is me on any given day, any given minute....well, she's not exactly me, my expression would never be as serenely sensual....It's more of a hovering in a corner, completely panicked,no makeup, hair hanging onto a ponytail holder, and of course maniac....real sexy.....bon appetit...

I must, however, begin to ween off my unbelievably co dependent love affair I have going on with chocolate...whom I have been cheating on with cheese....and of course, with Pinot Grigio, Bacardi and Grey Goose....and le pain...bread.....Obviously I have a problem.....and now I have a problem zippering my pants.....Oy vey.........

It has been bought to my attention today, again, that you cannot find a full length mirror or a scale in my house. There's a reason for this....how can I maintain my delusional state of mind if a full length mirror is present? I know that my weight has surpassed my IQ, and that I am officially fatter than I am smart....I know that my dress size doubled, ok tripled, since I married.....I know that 20 years on 40 pounds and 3 pregnancies makes an impact on a mind that still thinks I graduated from college yesterday. Not to mention that I hold onto things from the 80's just in case I get to opening up the exercise videos I bought 8 years ago and actually get through a whole routine......But if I had a full length mirror, if I had a scale, if I looked down, it's not the weight gain that would depress me, but the inexcusable abandonment that I have allowed to happen.

Today I reprimanded Gabe for sneaking into the pantry and stealing potato chips. As I kicked him out, I quickly got in his place, stuffed my mouth with fritos, potato chips and some sweet salty popcorn to boot....then I spotted the chocolate....and had my way with it....For the first time I actually realized what I was doing.....and was embarrassed...I think I might have violated the chocolate...there was certainly no respect, no savoring, no genuine feelings of gratitude for the Swiss, for the Belgium, for anything....There I was chugging Lindts truffles like a bottle of water on a hot day.....sobering.......Ended up crying in the corner, in a broke back "I can't quit you" kind of way.....I've come to a conclusion....It's not you chocolate/chips/cheese/bread/cocktails/ nutella/ dulce de leche/flan/ pizza/ pasta/ice cream.....it's me....it's definitely me.......

It's not even my weight that is unhealthy, it's the relationship I have with food. It's always been obsessive, it's always been compulsive, it's always been all over the spectrum....From not eating at all in my teens, to non stop now....When I was chasing Gabe through the neighborhood, it seemed to burn off, but now that I have decided yelling threats of no computer is actually easier...there is absolutely no movement....the only thing I exercise is my patience and my mouth.......and now, as I suck in everything I can so that I can get into my jeans, and try to fold and tuck everything I can't back in....I'm starting to come to the conclusion that the non existent thought I put into myself and my health may backfire sooner than I think.....

I need Oprah's new season, I need Dr. Oz......or maybe I need to do what my hubby has been telling me to do for a while now....put the kids on the bus, turn off the phone, take the dog for a walk.........6 more days till the bus comes........

My Bad.....

The Jackson family has planned a private ceremony today to finally lay Michael to rest.

Hopefully his children will be able to start the healing process.

Hopefully we all can start some sort of healing process.....

The first time I ever heard of a Hyperbaric Oxygen tank/chamber was when I saw Michael Jackson's image on the front cover of a tabloid magazine close to 20 years ago. The one gloved wonder was in one. They said it was to retain his youth, his reps said it was a publicity stunt....but to me, it's what I'm researching about now for Gabe.

HBOT is a wonderful therapy for anyone who has a brain injury, is a burn victim, has cancer, MS, atherosclerosis, stroke victims, etc, etc... and it turns out it is great for many kids on the spectrum.

Dr. Oz appeared on Oprah not to long ago and also spoke about the anti aging benefits that HBOT has, but when it comes to a body being submerged in 100% pure pressurized oxygen, the benefits are nothing more than restorative.....

Who knew oxygen would be a good thing?????? Go figure..........

After Michael's death, along with detail after detail of all the scandals, the doctors, the accusations, there were also some reports that focused on just how generous he was. One of the many donations that became known were the many hospitals that received Hyperbaric Oxygen chambers for their burn units. Having been a burn victim himself he knew first hand how important this treatment was. Silently he left a space to help others heal.

Rest in peace Michael Jackson...

Deep breaths.......calming deep breaths......only 7 days till they go back to school breaths......ahhhh.............................

Who's bad?

When is this poor man going to be allowed to rest in peace already? Micheal Jackson has been dead for more than 2 months and he is still not buried.
Here I was feeling guilty for forgetting to bury a few cremated pets that had passed on through the years, now I'm not feeling so bad about myself...

As riddled with controversy as his life has been, the way his death is being handled by his family and the media is mind boggling. This poor man never really did have a chance.

As a young girl, I grew up listening to his music, watching his cartoon show, absolutely captivated by his incredible talent, his magical dancing, his fabulous music videos. He was the soundtrack to the first part of my life. I remember watching the Motown 25 special and the next day swapping screeches at the lockers with my girlfriends. I remember Thriller, and Sports nite at school where we Juniors beat the Seniors with our rendition of Thriller over their rendition of Beat It....And being heartbroken as I watched this eccentric, reclusive, intensely shy man retreat further and further into what seemed to be a twisted fantasy world. I suppose if you are greatly abused there can only be a disconnect somewhere along the line. When no one around you respects the boundaries of your privacy, or your right to it, would you begin to blur them as well? Would you be able to see a boundary?

I'm not going to pretend to know what went on in Michael's head, but what is evident is that this man was in pain, it was as clear as the non existent nose on his face (punchline drumbeat please). This man in the most public of ways changed everything he saw in that mirror. It was written about, ridiculed and criticized in such a manner, it was hard to see who was taking advantage of who, though Michael seemed to always walk away somehow exploited.

This is what drives me crazy these days......people are losing their jobs, their homes, their health insurance, their hope.... People are having to go bankrupt because they try to keep up with hospital bills, or treatments to help their children with Autism...We are at war......we are in a recession.....Global warming is real.....we have lobbyists dictating what happens in the Congress and the Senate.....our educational system is lacking......learning disabilities, auto immune disorders, and neurological disorders and diseases are on a rise in epidemic proportions ......there are real issues around the world that needs to be addressed......and sometimes it feels like we've all collectively mentally retreated to a twisted fantasy land where we are lulled into thinking everything will fall into place....or this can't happen to me......until it does......everything is blurred...........

Talent alone doesn't save you. Neither does principles, especially when they are so paradoxical.
You really can't bury yourself either...there always are contributing factors........
We need to focus on the things we can fix, we need to ban together to help each other out, we need to stop trying to live vicariously through others, we need to stop setting standards for them that not only are impossible to meet, but not in our place to set to begin with. We need to get involved, ask questions, reach out, and find ways to make those that we elect to serve us accountable to the office they hold and the oath they took. Save the cheerleader save the world? Think for yourself, research, take care of the planet and the things in it, save the world..."Make it a better place, for you and for me and the entire human race."(Michael Jackson) ....... We need to go beyond the superficial, and we need to stop calling the superficial "news" because it gives it credibility.....

What Michael did, what he didn't do, what was alleged, what was dismissed, what was paid, what wasn't, who he loved, who he hurt, whose life he made better, what he shared, what he didn't, what he gave of himself, what he couldn't, what he left behind....he was ultimately human, forgiven or not, loved or not, he was human.

And he is still refrigerated like some piece of meat, which by the way if he was, he would only have about 4 more months before you'd have to throw it away.....or serve it with some fava beans and Chianti and call it a day.....

Enough with his death, his secrets, his doctors, his family, his last days, his last hours, his last will.......Bury Michael Jackson. Let this man rest in peace. As for his legacy, his music will continue to live on.......