Resolutions

In the east ends of the Island, we awoke today to snow. The sky and ground share the same deep white powdery feel. The only distinction between the earth and heavens are the bare brown trees outlined by pockets of snow deep within it's crevices and perched on it's limbs......White, contrary to popular belief, is not an actual color. It is a reflection of all colors. Perfectly fitting I suppose, for a day such as this, the eve of a new year, a moment to reflect and to prepare to begin again.

Last year, like almost every year, I had a list of things I swore to myself I will get done. Lose weight, get organized, get out of debt, save, be a better mother, stop biting my nails, make more time out for my boys, make more time out for my husband, for my friends, for myself....eat healthier, be present, be open...I will not sweat the small stuff, will write more, paint more, worry less....I will be better, be bolder, be fearless, enjoy more, seize the day, make the most of it....I will be the very definition of balance, I will be zen........Needless to say I ended up heavier, more tired, more stressed, depleted, depressed, nail less, absolutely confused, considerably disoriented and disorganized. The only time management I was able to see was Time managing to paddle and punish me, winning yet again. If you want to set yourself up for failure make resolutions.........

Perhaps my idea of what should be is not necessarily the most rational taking into consideration my age, my mental state, my workload, and my inability to discipline anything, let alone myself.
Perhaps I need to rethink resolutions and try social story strategies, breaking it down into smaller more attainable steps,focusing on 1 goal at a time. Turn that list from typical Resolution list to an IRP (Individual Resolution Program)....Maribel will resist the chocolate 80% of the time.....Maribel will put down that cocktail and exercise 80% of the time.....Maribel will complete what she started 80% of the time......Maribel will learn to accept the 80% and not throw it away because it is not 100%.......Maribel will learn to let go 80% of the time.....

When I was an apprentice under the Artist John Kacere, he would assign certain drawings that I had to do and then observe the way I would tackle a clean sheet of paper. You are a dessert girl, he would proclaim, explaining that I would pay most attention to what I loved ( the human figure and face) and somehow let everything else fade out completely. His great lesson was to pay attention to the whole page, work it from drinks and appetizers to coffee and dessert and then you will leave yourself and everyone satisfied,,,or with heartburn and indigestion....or a hangover....He would say "let go of the first time get it right mentality", work and rework it until you are comfortable with it. Be thoughtful, be studious, be observant....erase mistakes and try again. Round what needs to be rounded, Shade what recedes, highlight what protrudes... Details, subtle and not so subtle, are of paramount importance to the essence of the piece. Everything has a place and purpose....Everything matters.......

So on this whitest of days, on the ends of the Island, I think of all the colors that have graced my year. 2009 has been challenging to say the least. My new years resolution? Tackle this new clean year the same way John Kacere taught me how to look at a sheet of paper. Hopefully a little more patient and forgiving....respecting it's essence, paying attention to it's details..........

Happy New Year

Regrets.....

Anchored by the "what if".....
unfulfilled potential shades
what could have blossomed..............

My Igloo........

Baby it's cold outside!
Over 24 inches of icy glacier like snow outside my door...I think I saw a few penguins skate on by.....Might be an Eskimo's wet dream....but more of a nightmare for my poor hubby and sons who had to shovel out somewhat of a path, and dig out 2 cars....

It's been 2 days of being held hostage by Mother Nature, and apparently no talks of a negotiation are in the works. Two days went by and still our neighborhood has yet to welcome a plow. Nothing. Our block is one deep, slick, densely iced up road that swerves into a new street at each bend without breaking a line....one continuous curvy perpendicular line from one major roadway to another. All I need is a luge and I'm set......
Seriously though, a block that is otherwise safe, now is a frosted slip and slide of a disaster just waiting to happen..... get the popcorn...and the cell phone....I got front row seats.....

Still, in it's North Pole way, it's quite beautiful. The colors of the sky bounce of the white of the snow just like the ocean reflects the summer sky.......every house wears the same white uniform of snowy roof, thick layers of snow lining porches, steps and banisters......Christmas lights on trees glowing through the windows and colorful outdoor lights outlining the homes shine bright....
Gabe tells me it looks just like Christmas now....he is aware of what it's supposed to look like, the ornaments, the tree, the stockings, the holly and mistletoe, the bows, the sparkling paper,...Rudolph, Frosty, Santa Claus, the Peanuts......he is aware of what it's supposed to smell and taste like...the cookies, the hot chocolate, the candy canes, cinnamon.....he is aware of what it's supposed to sound like...the music, jingle bells, the rustle of the wrapping and unwrapping of presents......For him Christmas has finally become a complete sensory experience....An understanding that Christmas is so layered it becomes a feeling.......
And for me, after so many years, it's beginning to feel a lot like Christmas simply because little by little I'm learning to exhale as my son is taking in the world around him and learning how to make sense of it in his own way........

Every year after diagnosis my son Will would ask Santa for a cure for Autism and for Alzheimers.
Every year I have continued to ask for the same thing, except my letters were not addressed to the North Pole, they were addressed to 1600 Pennsylvania Avenue......Perhaps one day an elf without lobbyist affiliations will take it seriously.........

in the meantime...
I'm dreaming of a white Christmas....NOT!!!!
I'm dreaming of a sandy warm Christmas.......mine, it'll be white.....white....white.....and maybe we'll be able to get out for Christmas.....if the plow ever comes!!!!!!!!

Clementine is Savoring the Christmas Spirit ....and it tastes like Chicken

The debate over what provisions should be allowed in the universal health care policy has me on edge. Everything that I have heard so far has me a bit worried. Suddenly change seems like alot of the same, which has me questioning...can you really change???? Yes we can what? Obama I love you, but I'm a little confused....

However, the Health care policy is not my pressing issue right now.....There is something sucking the life out of my enjoyment of our Christmas tree....No, it is not the Grinch who stole Christmas.....It's Clementine who is stealing my Christmas ornaments....gently plucking them off of the tree (like selecting a chocolate morsel of delight out of a big box of Godiva) and sucking them down like underage Frat boys with fake id's attack beers and shots of jagermeister at thier first bar.......How she is able to differentiate between the glass ones from the non glass I do not know.... What I do know is that I'm running out of patience as quickly as I'm running out of balls....Christmas ones that is..........

This is Clementine's second Christmas with us. Despite the fact that she slyly eyes the sparkling ornaments with the same lustful look she gives Reeses tail, she has managed to wrap us all around her oversized paw. She is funny, loving, silly, joyous, mischievous, playful and a bit over the top. A complete character. But she is a klepto. We should have renamed her Winona....She has a bit of an issue with authority, mainly she thinks she's above the authority....And she thinks she can get away with just about anything with a tail wag and a kiss on the nose......which, by the way, works......

She fills up the house....granted she's a Great Dane so she fills up any house.....but her energy and her demeanor match any twinkling light on the tree, and glitters as sparkly as any ornament she has devoured.....and digested............and expelled....

Now if I could just get her to leave the tree alone, leave poor Reeses alone, leave poor Lexi alone (my other 2 canine baby loves) and stop jumping on top of me as soon as my husband gets out of bed.....She has fluffed me up like a pillow and I have unfortunately retained the shape!!!!

Which makes me think of just how out of shape I am...and then my mind wanders back....

So President Obama, please do what is right by us and reword " reasonable" and rethink what you are capping, and who you are allowing to control these caps......Many people have lost their homes to caps placed by the health insurance companies you are courting in order to save their lives, battle their cancers, try to recover their children......I and many parents of ASD children understand all too well that "within reasonable treatment" means a complete denial of treatment that can help their child. I shudder to think what it would do to the Alzheimers patients.... If I had $10 dollars for every time I was denied help for my child, I would have been able to pay for the treatments upfront!!!!!! And still be able to go out to lunch.........

I suppose Universal Health care is really one of my pressing issues........

How about a fair Health Care Plan, one like lets say, the Congress and Senate enjoys...We pay for their health care and they don't refer to that as Socialism......Maybe Santa can put that under our tree...health care for all.....along with a few extra Christmas Ornaments to replace the ones Clementine and Wall Street stole.......

A kiss on the nose goes a long way............

But doing what's right always brings it full circle..........................

Which makes me think of ornaments.........

If you give a pig a pancake........

If you give a pitbull lipstick......

If you give a people what should be a basic foundamental right................

Oh Christmas Tree Oh Christmas Tree

Just a few days ago I was carefully weaving the lights between thick bristly branches, making sure each section of our Christmas tree was completely illuminated. With every ornament came a smile. Simple memories attached to each one, some older than I am. Most were bought in anticipation of new arrivals, and in celebration of many milestones. The Popsicle frames with stickers and my childrens kindergarten faces preserved....the quirky snowflake cut outs they wrestled with in their classrooms during holiday craft time....the yearly ornament we buy to add onto our ornamental family history. Our living family tree, full of bling, glitz and lights which is more enticing than the regular family tree full of nuts, quacks and a few hot messes.....ok, so it's the same tree....only with a little more pizzaz.....but no tinsel.....because the dog (and finally after lots of therapy it is just the dog now) eats the tinsel and then it hangs from a whole new area.....enough said....

On Saturday we took the kids to go see the tree of all trees....The super steroid version of trees.....The Rockerfeller Christmas Tree. We drove in from Long Island. The kids were so excited about the city and the tree and the skyline. I was so excited because I was going back home.

When anyone asks me where I'm from, Brooklyn or Queens....I answer I'm a borough girl. I'm Brooklyn born, Queens raised, Manhattan educated and I worked in the Bronx. Ok, the only thing that tied me to Staten Island was a guy I dated while in college, so again, enough said.
New York is more than a state of mind for me, it's a state of being. As a child, when we would go into the city it was a complete sensory experience. From the aroma of the hot salty pretzels to the long thin hotdogs with the relish and onions and sauerkwart lingering, the roasted chestnuts and honey glazed peanuts, to the perfume that would seep from the stores as the doors open and close. That's what I would imagine wealthy homes must smell like. That essence of exotic flowers, delicate, lacy and soft. I would walk down the crowded streets with my mother and brother and it would feel like everyone moved as a unit and I almost had to jog to keep up. The lights, the beautiful buildings, the carefully crafted decorations. I would walk down the stairs in to the underground world of trains in Queens, and I would emerse into the spectacle that is the city. Alice in Wonderland......Mari in NYC......
By the time I was taking the F train in to go to NYU, NYC stopped being such a fairy land for me. It started with the large homeless population that would seek some shelter in the trains, and then I would again encounter laying on the streets, covered by cardboard. Volunteering in a soup kitchen my 4 years there I saw the homeless populations shift from people with obvious mental and addiction issues to the elderly who had gotten evicted from their rent controlled apartments, families who had lost thier jobs and homes. While it was difficult for me to know that there was suffering, those years in the city also opened up a whole new world for me I had no idea existed. The night life, alternative lifestyles, perspectives from all walks of life. NYC is a performance art piece that unfolds in the moment. The stage might be an island, but the audience is the world.

And now, before the tree, I couldn't help but think that perhaps this tradition, this grand gesture of hope and holiday spirit, dances like lights on every branch of this magestic tree. This, our city's history, a family tree, holding everyone's memories...one attached to the other.....glistening.....colorful.....vibrant.......bright.........

Silver bells, Silver bells it's Christmas time in the city...................

Trying to PEACE things together.......

It was easier to summon a Christmas Spirit when the perimeters of my world were confined to a few neighborhoods in Queens and the occasional trip into Manhattan to go to the Metropolitan Museum of Art, Macy's or a Broadway show. Manhattan, was my Rome, all the artistic wonders, all the exquisite things could be found there. Easy to dream when exposure is limited. It's easy to believe in all things magical when your parents are nothing short of magicians. It's easy to believe in Peace on Earth, and everyone living like you do, when everything on television is a song and dance, and your friends exchange similar demands on Santa's elves, and there are parties, and there is excitement. From Thanksgiving to Christmas the anticipation of the big day hung on my breath like candy canes on trees........

Once my world became bigger than my bus route, my Christmas spirit began to ween.....At this point what motivates me are my children....but today, as I go search for the lights and the ornaments for our beautifully shaped tree, I try to make sense of how instead of moving forward as a world community, we can move backwards.......

Yesterday CNN reported that there is a horrifying Anti Homosexuality Bill in Uganda that is up for passage. This Bil if passes it will become a tremendous violation of human rights. There are many Human Rights groups protesting, but sadly, on our local news channels we rarely hear anything this global and pressing until a massacre happens and a beloved celebrity brings a camera crew and appears before Congress seeking help.....Durfur, Mr Clooney, Rwanda....etc, etc.....

This bill has these stunning provisions....ready?.....

Any gay or lesbian convicted of having se will be sentenced at a minimum of life in prison. If a homosexual person is found having sex with a minor, or sex more than once, they may be recieve the death penalty....

Any person found with HIV may be executed

The bill forbids any promotion of homosexuality which means that any organization that works with HIV and AIDS prevention and awareness will be banned.

This information was gathered off of CNN's website.

In other words, on a continent with a severe Aids epidemic, the answer becomes genocide...again....genocide is a big answer isn't it????. How does that happen?

In our own way, we are not much different. Here we say we would never ever do such a horrid thing, it is so barbaric. But every day there is an acceptance to violence against gays. Gay bashing is real. State by State the basic right of marriage is denied, protection of family under a law is denied. Human rights are in many ways denied.

In the Congo, women are being viciously raped, children are being viciously raped, and now it's reported men are being viciously raped by guerilla warriors. Womens rights have been repeatedly violated across the globe and every time you strip things down to justify this behavior you find zeolots distorting religion. Violations of Human Rights like Global Warming effect us all, doesn't matter how much we deny what goes on, or how hard we work to reduce and confine our world to our back yard. It's a ripple that turns into a wave, and if it's not addressed, it's a tsunami......

We need to stop this nonsense and give our citizens a right to marry whomever they please as long as both parties are of age and consent. We need to set the right example instead of pretending to be horrified by the lengths Uganda is about to go to, yet denying our own thier right to a full equal life. How does it come to be that Democracy can be used against advancement?

And I guess if anything is to be done for our brothers and sisters in Uganda who will be persecuted for being homosexuals, hopefully our gay and non gay celebrities will book a flight, bring a camera crew, and start filming documentaries.....and while they are at it. please look into Child soldiers and womens rights again, because nothing much is changing.....and then turn the cameras on us, we still have a lot of work to do......anybody interested in a documentary on what happens to our special needs kids when they grow up??? How about the ones that are able and willing to work and just can't get a job because of the intense discrimantion?????????

Yes Virgnia there is a Santa Claus.....There are lights and decorations to put up......In the season of hope, rituals and routines, songs and dance, Christmas classics, the anticipation that exists in the tiny piece of the world my children play in remains in tact. The universal prayer however, that hangs on my breath now the way candy canes hang on the pine branches, becomes "let us figure this out for our kids, so that thier piece of the world can join the other pieces and coexist in PEACE.....Peace On Earth......Can it be??????

Why NY Why??????

New York, you are breaking my heart. How can it be that the state that hosts one of the most progressive cities on the planet, reject a bill to allow gay marriage?

It used to be that we were taught love is love. Love thy neighbor as thy self, love is a very many splendid thing, how do I love thee? Just as quickly as we were fed bits and pieces of what love should be we were asked to assign an acceptable gender to it, make sure it's the same race, nationality and religion. While we were at it we were asked to make sure similar social classes and educational levels were adhered to. Yet, love is love right?

Love is out of the box. Love is unconventional. Love is layered. As someone who has been married for 16 years, I think I have earned the right to a little insight on this particular institution. From my experience, the focus needs to be put not on the gender of the couple, but on the intent, the understanding, the respect, the profound commitment involved in wanting to share your life with someone, despite the unexpected turns, the difficulties, the celebrations, the moments of reflection or discord....the focus needs to be put on the work it takes to keep a relationship honest and tended to, and the faith it needs to raise above ego, insecurities, vanity, misplaced pride, weakness.....the focus needs to be put on the love between 2 people who want more than anything to belong to each other in a way that feels natural, familiar, complete. Marriage is more than a just a certificate, or a union, it is above all a legal validation that a family with rights now exists. There is a responsibility that transcends the moral calling, and resides in a world of law and order.

Equal rights. We really have to start thinking about what that means. We still live in a place where prejudice still interferes with basic human rights. As a mother of a child with disabilities, I see it first hand in the most frustrating and infuriating of ways. As a Latina, I have had to struggle to rise above preconceived stereotypes, but that is nothing next to what people with disabilities face. And when it comes down to the Gay community, the violence against them, the stereotypes, the fight to be considered a family, the fight for a right to marry....just who are we as a society, as a country, as people to deny others their basic human rights? If we are to believe in a Loving God, then I just cannot see that God coming in between love, but rather blessing it.

When there are too many restrictions on love, how to love, who to love, exactly what does that love become? And when we place restrictions on a group of people and expect them to follow the same laws and be quiet, what does that make us? Funny how segregation finds different ways to reinvent itself.......

"If I can make it there, I'll make it anywhere, it's up to you, New York, New York".......

We need to make this right..............

Moving towards independence....

Every 3 years, children who are classified and have an IEP (Independent Educational Program) are re-evaluated. Social history is retaken, IQ tests given, educational and language assessments are administered. Gabe's 3 years were up and he was given these tests. The result is a triennial meeting where we sit and discuss the outcome. Around a large table sits his 2 teachers, his 2 speech teachers, his reading teacher, his school psychologist, his occupational therapist and the special ed director. I take my place amongst the village is that is helping my child.

Every person who tested him had the opportunity to speak. He is doing far better than anyone thought he would have been some 5 years ago, but it is the future we look to, so it's revealed that the goal is to make him as independent as possible. The aide will gradually take a complete backseat. He is to be weened off. How long that takes depends on many factors, but middle school is only 18 months away and my guess is that they would like to see him independent by then.

The day after the triennial meeting Oprah made her big announcement. Holy crap....only 18 months to ween me off of my afternoon crutch, my self help guru, my chocolate and cocktails personified....who is going to redirect me?

Silly, isn't it? Yet, for the past 8 years not much has made sense to me. Oprah has taken her show on a road to self discovery and awareness, with an emphasis on community, kindness, empathy, I have been hooked ever since. I'm not saying every show, or every season is an aha experience, but I am saying without a doubt conversations that needed to get started, have. I'm saying that womens health, womens issues, world issues have taken the forefront in a way that really hasn't been dealt with before. While 60 minutes and other news shows, take an objective journalistic point of view, Oprah's show handled multifaceted issues regarding women with hard facts and respect towards the real emotions experienced by women, never reducing them to just statistics, never trivializing trauma. She pioneered a renewed interest in reading and pushed the value of education in a way that has never been seen before on a talk show. Talk became the operative word, a full blown verb. It's as though the show became a vehicle to enlighten an audience and offer a perspective many might not have had the opportunity to seek. The professionals she invited onto her show became celebrities in their own right. The power of Oprah really is the ability to share her enthusiasm for an elevated quality of life that comes from being connected to your surroundings, in a very real and honest way, never losing her humanity and always striving for ways we can be better. Do better. Are we doing our best, are we doing what we are meant to be doing? Are we meeting our potential? Are we present ? What do we know for sure? And for those of us who are still trying to figure it all out, we look towards Oprah for guidance. So an announcement like this is in many ways like the end of an era. Even if she would design a new talk show for her new network, this show, as we know it, still ends.

So, while Gabe's big task at hand is to begin the process of becoming self sufficient and independent enough as to not require an aide to help him redirect and regroup, my big task is to put everything I have learned into place. Gabe will be taught to advocate for himself. He will have to learn to keep up without having the extra support to fall back on. Now it's not the question if he just can't do it, it's the understanding that he can, and breaking it down into smaller steps so that he'll be able to manage it. Huge stride.

As for me, it's also about learning to advocate for myself. It's about finding the disclipine and courage to do better. It's about continuing to embrace the bigger picture while paying attention to the details that enhance life. It's about being open to change, and embracing the possibilites......

25 years, Oprah said 25 is the perfect number....I was born on the 25th.....maybe I should start betting on that number....................

Pepe

Thanksgiving was always my grandmother's holiday. She would spend months perusing gourmet cookbooks carefully planning out the last details of her culinary moment in the sun. A few days before Thanksgiving, she would put the final ingredients down on her list and call for my grandfather, who would appear at the doorway dressed in his typical garb....polyester pants, a flannel shirt, his Members Only jacket zippered all the way to his chin, and on top of his head, his signature black beret made of wool.

The two would take off in their two tone Buick , navigating through the streets of Woodside until they made their way to the removed supermarkets with the discounted prices. He would calculate every penny looking for bargains, she would exchange his carefully chosen items for the brands she was loyal to. He never had a chance. She won every time.

Though Thanksgiving is always associated with my grandmother, the night before belonged to my grandfather. When I was young, I would go to their house the Wednesday before, right after school, to help prepare for the feast. As soon as I would arrive my grandmother would send my grandfather and me back out for last minute additions to the list. In the car I would tell my grandfather about my day and he would tease me, let me listen to my radio station and he would sing along to the latest Micheal Jackson or Elton John hit, my all time favorite is when he did his best Bruce Springsteen. You haven't heard Born in the USA until you heard it in a Spaniard/Cuban accent...stunning....In the market, he would do his thing, calculating and trying to save, while I would do my thing and exchange his choices for the products I knew my grandmother sent us there for. He again, never had a chance. One way or the other, she always won out. But here is where we would do our thing. After we purchased what we were there to buy, we would take a ride over to the Entennmen bakery. There we would pick up a box of coconut macaroons and we would share it all the way home. This of course was hidden from my grandmother who would have yelled at us for wasting time. The rest of the day into the next, I would sneak his favorite appetizer and desserts over to him. The piece de resistance was her infamous Pumpkin cake with the cream cheese frosting which we would attack and then try to reconfigure so that she wouldn't be able to see just how much was really missing.

My grandfather was a man whose wit was sharp and dry. He loved quietly, faithfully and unconditionally. He was forgiving. He was thoughtful. He was layered without the complications of ego. For those viewing from the outside in, because my grandmother was such a strong personality it could appear he was her puppet. For those of us who watch helplessly as my grandmothers memory was taken first, we realized he was never a puppet, but an unbelievably strong man who spent a lifetime deeply inlove with his wife. He let her think she had the control she needed to have, and then he took care of her. My grandfather was a man of his word. And though his words were few, they were fair, they were honest. I never doubted he loved me, he was always there, quiet, by my doorway in his polyester pants, flannel shirt, Members Only jacket zipped up to his chin, and his signature black woolen beret snugly worn on his delicate head.

Every year I make my grandmothers Pumpkin cake with the cream cheese frosting. As I mix the ingredients together, bake my cake and frost it, I think of her......but I as cut it into squares and place it on the serving tray, it's all about him. But then, it always was.......

I'm missing my Pepe...............................

Growing pains.....

Lost in the veridian hues of green, I hear your voice flippantly declare that I have peaked as a painter, you haven't seen growth in years. You suggest that I consider writing, pointing out that it seems to come more naturally to me, more fluidly. With that said, you also mention that I have a habit of over elaborating, that I need to edit. So much for fluidity.

Be careful when you speak of someones passions as though they were dismissible. There is a fine line between constructive criticism and destroying confidence. Hurtful words slither into cracks of what should be a solid foundation. While you believe you are supportive, and have been, it's those words that have been hiding in the corners that make me question not only my talent, but more so, why I would have allowed anyone's opinion to carry that much importance.

Easy to state that I have spent years neglecting my art, not challenging myself the way an artist should because my son's developmental disability needed every ounce of my creativity and my attention. Easy to state that my own fears and insecurities stood in the way of artistic growth. Easy to state that Autism takes hold over your life until you figure out a way to get it back, and work out some sense of balance. Somehow, pushing the art envelope falls onto the to do list right after finding your voice, helping your son find his, navigating language the receptive, the expressive....opening and closing circles of communication...finding and teaching the nuance of nonverbal communication...researching therapies, biomedical interventions, etc, etc.....

6 years ago I took great offense when 5 neurologists told me to institutionalize my son because he would not amount to anything. Here were 5 professionals who couldn't answer a question, who did not know a thing about Autism suddenly knowing that an institution would be best. I knew my son did not peak at 2, I knew despite it all that there was so much in him, and I had to figure out how to bring it out.........

And now I say to you that I might not have grown as an artist all these years, but I have grown as a person. I have more to say now than I could have ever thought. Simply by having to go back to the basics, re-examine life, redefine normalcy, differentiate between a wish and hope, and appreciate how important it is to be mindful in every respect, from how we treat our environment to how we treat one another. How we live our lives, how we chose to love, how we chose to express ourselves, this never peaks....it evolves.....we evolve.....So if it appeared to you that perhaps I have peaked as a painter, my delayed response is, how can I have peaked, when I still have so much more to learn?

With brush in hand, a vibrant pallette, maybe I can work things out....................

Walk this way...............

November blues are brilliant, I suppose it's easier to see the sky now that most of the trees are bare, but I would have preferred the leaves hung around on their branches a bit longer, and the day follow suit. This darkening at 4 in the afternoon mentally does a number on me. I'm guessing I am not alone.

So today I had company on my walk, my husband came along with me. We really have never walked together for the sake of walking before, it has always carried a very specific purpose. Today was a treat. He walked Clementine, I walked Reeses. We looked like a commercial, with the open winding road, autumn leaves scattered about, 2 dogs on complete ends of a spectrum in every way imaginable, and a pace set more by our years than our ambitions. We are old enough to know by now that delusions of grandeur can pull middle age muscles without mercy or remorse. I like the idea of being able to spend this time with him. I find comfort in his swagger. There is comfort food, and then there is the comfort you find in a glance perfected through the years, or in a well worn smile, the raised eyebrow that starts the giggles, or the swagger that wades through the cement with a mixture of realism, synicism, sarcasm and a hidden deep seeded hope. Part of me wants to be able to do this often, make this part of a routine of sorts....but the rational side of me knows it's best to take it for what it is, a beautiful start to a day, and be grateful for it......gratitude........

So, we ended up going to the diner for lunch. Sitting in a booth, far to hard for those not blessed by the bootylicious gods as I was, we shifted through the menu. I can't help but look around and see moms sitting together laughing. There are a few groups of elder folk scattered about, a few married couples, a few friends, perhaps life long by the relaxed way they seem to just belong to each other. The noise, the collective nature of voices rising and drifting became nothing more than a humm, and I spent the morning and the afternoon with my husband, away from it all, but more connected to everything and everyone. It's been a long time since so little meant so much in respect to me as a person, as I am. For all the extra weight I carry, for all the daily battles and the pushing and the researching and the hurried painted bottles or whatever is on my to do list, today, for a few short hours, I got my break.....and it was wonderful............

Long time no blog

My husband pointed out to me just 2 days ago that it's been quite some time since I blogged. The irony is that he started this blog for me as a way to help me get disciplined about writing...which truthfully would probably be the first thing I would have been disciplined in when it comes to me. Well, wait, there were the high school anorexic years.....Lord knows not eating takes great deal of self control..... but that obviously falls into the dysfunction that seems to have defined me so well.

So he asks why I haven't blogged in so long. Despite scattered flu's and colds that took turns invading our bodies, despite the laryngitis that robbed me of my ability to warn, plead my case and yell like a lunatic....despite the running around, the unexpected last minute projects that were assigned in September...I answered briskly, "I just haven't got anything to say".....

Here's the thing, most people who know me real well would find that hard to believe. Not only can I find conversation just about anywhere, but I can assign a feeling or an opinion on just about anything and if I can't find out the facts, my imagination runs wild. Yes, I know, when you assume....but I am a card carrying member of the "made an ass out of me and you"club, so the concept of possibly blowing something out of proportion doesn't intimidate me, it's my specialty.....and sometimes what I do best. Go big, or go home, right?

But I have been more quiet lately, at least on the outside. Silently, I have been struggling.
It's easy to disguise "I don't know how to say, or describe what I feel", or flat out depression. With a shrug of a shoulder, a roll of an eye, a smirk and sway of the hip, it instantly gets transformed into an "I don't have anything to say"....and I do what's familiar....I shortchange myself again.

So here is a bit of what I couldn't find the courage to say.......
I'm really tired, and I feel so guilty admitting that Autism and ADHD and all things neurologically challenging, financially challenging, educationally challenging....hell, anything challenging, lately has left me unbelievably challenged.....and overwhelmed....I can't stand the instability, the insecurity, the not knowing......and I needed a serious break, at least a day of not having to think about it.....or a night where I can go to a resteraunt with my husband and try to channel a somewhat acceptable facimile of a woman.....Do crusaders get tired? Do they doubt their impact? Do they lose themselves on their way to battle....

There was an article that came out around Veterans day that said Mothers of children on the spectrum suffer the same type of stress as solders and veterans. I have never been a soldier or a veteran, but I can tell you this.....anyone that is in a caretaker role and has a mystery like Autism on their hands, and knows that the only chance their kid has for a loving, caring, environment and a shot at fulfilling their potential, whatever that may be, has an unbelievable fight ahead. It's the fight that drains you. It's the constant thought of having to be alert, on guard, cautious, that leaves you depressed and seeking signs to keep your faith going strong....Things like, encouragement from friends and family......a moment of contained normalcy at the end of the day....an unexpected answer at the dinner table...a good hearty laugh....Gabe, telling me he loves me.....Carlos sneaking onto the couch with me and cuddling...Will, always helping me out, always dreaming of something new to create....my parents, who always have been so incredibly supportive....and my husband....who knows it's not that I have nothing to say, but that I rather not say anything than really hurt someone......The guilt is not about it being hard, or being a puzzle, it's about not having been able to fix things, to give Gabe the typical beautiful childhood...the guilt has been about being angry that my child was robbed of a chance at a normal life by a disorder that my gut tells me has nothing to do with God's plans and everything to do with our inexcusable ignorance and greed and the damage it has done to our environment. The guilt comes because I love my children more than I could ever express and I don't ever want Gabe to feel any less because he is so much more than I could have ever hoped for.
But I am tired, I am stressed. I am a bit depressed. I had stopped my "healthy diet" I had stopped walking. I had stopped blogging. I had stopped so many things. I gained weight. I am out of breath. A vision of loveliness.....so sexy I can't stand it.....I'm too sexy for my life too sexy it hurts....I can't zip my life into my pants it's so sexy......ah....Frankie Goes to Hollywood...Relax don't do it.......now there's a good motto....

I need to get over myself. It's mid November. Thanksgiving is 9 days away. Gratitude, gratiude, thoughts of gratitude.....gratitude journal....gratitude Godiva chocolate......gratitude....Godiva....Godiva chocolate martini...GRATITUDE!!!!!!!!! YES!!!I'll drink to that!

Here's to faith....here's to hope......hey, if anything, I have been consistently hopeful, and anyone who lives by hope knows the intense regimen one must keep to maintain it......

So it begins again.........
One blog at a time.....
Tomorrow I shall walk and eat a healthy breakfast......
and take it from there............

I Stim, You stim....

There are enormous misconceptions about Autism, and those who have this disorder. One of the many is Stimming. My son has been stimming more these days, so it's one of the many topics I have been "perserverating" about.

For those who may not be familiar with this little gem, stimming, to quote this generation's Encyclopedia Brittanica, Wikipedia, " is a repetitive body movement that is hypothesized to self-stimulate one or more senses in a regulated manner. The term is shorthand for self-stimulation, and a repetitive movement, or stereotypy, is referred to as stimming under the hypothesis that it has a function related to sensory input.

<sup>Simply put, flapping, rocking, vocal noises, visually stimming through the corners of your eyes, are all classic examples of what many people who have sensory processing issues,(which would include those with Autism and other developmental delays and neurological issues) do to help calm or self regulate.
My son is a slap happy kid who likes to harmonize as he quickly smacks the side of his leg. If he were on stage with a bango, during a ho-down or emceeing a Square dance, or doing the Hambone dance, it would be completely appropriate. Hell, it would be amazing. But this is not when he chooses to go all out. He does this when he gets excited or anxious. In the playground, or in class, or during an assembly, in the supermarket, at the movies, in a resteraunt. You want all eyes on you in a minute, this is all you have to do...put your hand on your thigh and let it rip, real fast, humm a few bars of something catchy and you have the floor.

Think stimming is only something people on the spectrum do? Think again. My nails are gone, chewed completely down, and now I'm working on the sides of my fingers....you would think they were chocolate. The hair many like to twirl incessantly, absentmindely...the foot that is continuousy kicked while hid under the desk....the fingers that strum on the tables, the pencils that follow the beat.....the soft rocking from side to side as you wait on line...the tapping of your toes.....all examples of stims. The line that defines what is appropriate and what is not, what is subtle, what is functional and what hinders " normal" life can sometimes be fine, and in some cases subjective. So it becomes my job to not only figure out why he is stimming more lately (could it be yeast again, could it be something that might be bothering him? Could it be a nutritional deficiency or an infraction? Could it be a new demand placed on him?) and then to find a way to help Gabe transition into a more subtle stim that would fulfill the need he has to release the anxiety and excitement in a way that would not be disruptive to others. Luckily, because Gabe is now verbal, he can tell me now that it's something inside him that HAS to come out. It's the form HAS takes that needs to be rethought.

Here's the part that gets me. For all the live and let live, for all the religious talk, for all the political correctness, and the no tolerance for bullying bull in school, there is still a long way to go when it comes to respecting those with disabilities. There is still that us and them mentality. When it comes to people on the Spectrum, it's the intensity of how we take in our world through our senses, and how we are able to communicate it that differentiates us. We all stim, we all perserverate, we all need to get that excess energy out, we all need a way to ease our anxieties or deal with our excitability. We are not always appropriate. Our behaviors more often than not, leaves little to be desired. How different are we really when it comes right down to it? I have the audacity to suggest that Gabe should stim in a more subtle way and of course less frequently, meanwhile I say this nailess and pretty soon fingerless at the rate I'm going...with a good 20 extra pounds added on and hair twirled into knots so big I can tuck it under and call it a French Twist....though we all know it's a Stim Twist.

My son humbles me. Nothing like a magnifying glass held up against you to help you see the connections. The gene pool this kid was doing the back stroke in, was perhaps not the most filtered and purified.....at best it's questionable. I am half of the proof.....
But he is remarkable none the less. Slap happy and all..........hey, at least he now keeps his clothes on!</sup>

Autumn

Funny how the warmest of colors are lured out of the greenest of leaves in the crisp nip of fall.......
I hate this particular change of season. I suppose I too have problems with transitioning....this station of seasonal cycle brings me back to the stations of the cross, and all those Holy Thursdays spent walking the perimeters of the church, under my mothers warning eyes, and the priests monotonous drone. I know this may seem a little over dramatic for most, but Autumn is the Last Supper. Autumn is the betrayal. A few short weeks of red and yellow leaves riding brisk winds, pumpkin patches, corn mazes, hay rides, and decorated porches and lawns....and then it's over. It's grey and cold and barren. No leaves on trees, no flowers bloom, no lush green grass...no beach filled days, no firefly nights...no sitting on the porch with a good book.... ."no New Years day to celebrate, no chocolate candy hearts to give away".....Stevie Wonder keeps singing in my head.......

I am not a winter person. I am not someone who enjoys the snow, or thinks that anything cold, wait, let me rephrase that, most anything cold, could possibly be invigorating,...it's absolutely torturous.

But then, I have these 3 wonders that lose themselves in piles of leaves......
And get excited about Halloween,carving pumpkins, and costumes, and spooky walks and everything ghoulish and slimy.......They love the idea of family gathering for Thanksgiving at our house. They dream about Christmas for most of the year.....They believe in color. They believe in light. They believe in decorations, in trimmings, in details. They believe in magic. And while Autumn betrays me, it inspires them. It's all about the ultimate sensory experience.

I look over. Resting against the chair is a bag full of theatrical makeup, zombie masks, spiked choke collars, clown hair, derby hats.....I am Thursdays child. I am supposed to be full of grace. Holy Thursday....I'm still walking the perimeters, only this time this house, this neighborhood, this time, this life takes the place of church. Warning eyes are now mine. The monotonous sermon is nothing more than a negative monologue....How ridiculous to not embrace the beauty of fall because I dread the barren nature of winter. What a sin. I suppose nothing that can be resurrected really ever completely died. Perhaps this holds true within me too.....As worn as I have felt these last few weeks, today, in the midst of chores, homework, running errands, barking orders to pick up rooms, cooking, cleaning, laundry, I looked around the dinner table in awe. My family, loud, boisterous, funny, loving, tender, mischievous, sometimes careless, sometimes carefree, sits enthusiastically sharing a days worth of thoughts and experiences over an arroz con pollo. This is supper, hopefully not the last, but definitely present.
This is what is real, what is worth the sacrifice, what is worth believing in. This is my Christmas morning on an Autumn evening. Autumn, I am beginning to understand, never betrayed me.
My fears continuously do.

All falls back into place. The table is cleared, the yelling about the rooms not being picked up resumes, dishes are washed, dogs walked, showers taken, teeth brushed. The house is quiet for a few hours. Outside my window I hear my windchimes, like the leaves, riding the breeze.

Winds of change?

Transitions.....transformations.........

Perhaps I do love the Fall................

Ah to the choo....

There is nothing like waking up to the lovely soothing sounds of a child retching in the wee hours of the morning. Why, you just know it's going to be a wonderful day of laundry, constant cleaning of bathroom, temperature checking, soup making, motrin dispensing....ah, joy!!!

So I call up the school to let them know Gabe will not be going in, and the questions start..."do you think it's swine flu?" "Does he have a temperature?" "Is it high?" "Are there any changes?" "Is his brother here?" "Is his brother fine?".......Amazing how it all spirals out of control. It's allergy season, the weather is changing, everyone is back at school on top of each other, things are bound to be passed despite the daily bathing in hand santizers, constant hand washing, coughing and sneezing into elbows, face masks, etc...... Yet there is always that panic, there is always that fear because every time you turn on the TV or the radio there is talk, and that leads to worse case scenarios which in turn allows sanity and common sense to take a back seat while we envision the worst of the worst.....So I get a second call from the school, this time middle school....Will is feeling sick, his stomach is upside down, the nurse is nervous. "I have Will here, he says he isn't feeling well, given the threats of the swine flu I think it's best if he goes home, we wouldn't want to take any chances."......
So now the flu is a terrorist dropping threats....
And I have 2 sick kids home........
As long as I have enough toilets, toilet paper and toilet bowl cleaner I should be fine.......I hope....

Truth is it's always heartbreaking to see your child struggling, not feeling well, out of sorts. It's never easy to relax and let the child heal without turning to every home remedy, every over the counter relief meds, without calling the doctors office at least once to give them the heads up that they will probably be seeing you by the end of the day. It is what it is in this case, until it passes, and when it does, child # 3 will probably feel the need to hug a toilet and lay still in bed, under fluffed up covers dosing off amidst an afternoon filled with classic cartoons and warm liquids ........

Is it the seasonal flu, is it swine flu? I don't know yet, it's too soon to tell, but I do know that either way, soups on, the boys are resting, Boomerang is on the tube, and the thermometer and the motrin stays close at hand.......ah, how lovely, sun is shining, birds singing are on their way to warmer shores, the air is crisp and the autumn colors especially sharp and brilliant......where to stick that thermometer........................................

Hope, noble, is necessary for Peace

I suppose the surprise announcement that President Barack Obama won the Nobel Peace Prize will have some cheering, others questioning, and a few protesting. I imagine the speculation of whether he has done enough to merit such an honor, if the few months of his presidency could compete with the accomplishments of the other candidates, would lead to side by side comparisons and subjective opinions of what then does this award mean, and who really deserves it. So I decided before anything I would look into the Nobel Peace Prize to find out what it's about. Here, simply put, I read and I quote "according to Nobel's will, the Peace Prize should be awarded "to the person who shall have done the most or the best work for fraternity between nations, for the abolition or reduction of standing armies and for the holding and promotion of peace congresses."

^{It's easy enough to say that when the race for election started we were all begging for a change. Our state of mind collectively, as a nation, was as defeated as our economy and our place in the world as leaders. Our previous administration failed all of us, not just Democrats, not just Republicans, not just a certain class of people, but all of us. We needed to believe in our leaders again, at least have a little faith. We needed to feel like we can get back up and be strong and confident and well respected once more. We needed to feel that we would be able to find ways to survive the recession, keep our homes, strengthen our resources. We needed to believe that We too had some say, some sense of control over our own destiny. We were ready to vote someone in who listened, who was thoughtful, who had a more balanced sense of community and fairness. Someone who understood that we were all equal not just under the law of the United States Of America, but the unspoken law of humanity. Someone who knew our place within the world. And so, when Obama spoke for us instead of to us, when Obama kept his composure and didn't succumb to the nasty tactics we have become used to from both sides of the house, when Obama said change is attainable, YES YOU CAN, we did, we voted him in. The world cheered. As it turns out, they needed a hero amongst us too. They needed us to have a leader that respected them. Obama was not just our hope, he was their hope too. I supposed when the world listened to Obama speak, they heard a sense of fairness and truth, accountability and firmness that inspires hope. Finally there was someone in charge willing to listen and ask questions, be reflective. In a time when it all seemed so dismal, here was someone willing to do the unthinkable, he was willing to actually think things through. He inherited the biggest mess any new administration has had to clean up, multitasking would still not cut it. Not only did he have this to straighten out, but in this culture of quick fixes, we expected 8 years worth of damage to be} restored to it's glory in 8 weeks. Yes, it's true there is still a war going on...Yes, it's true the economy is still fragile, though better than it was.....Yes it's true, we are still in a complete mess.....But dignity and integrity have been restored to the office of Presidency. Our President is no longer the worlds punchline, or ours for that matter. That makes a great difference.

So do I feel that President Obama deserves the Nobel Peace Prize?
I believe that the true road to Peace lies within the willingness to fairly compromise without compromising your soul. I believe the road to Peace lies within respect, responsibility, openness, contemplation, honesty, accountability. I believe the road to Peace lies within understanding. I believe the road to Peace lies within honoring human rights. I believe the road to Peace begins and continues with hope, without it, we are lost. So yes, without a doubt, I believe President Obama deserves this award. Now I HOPE he can continue to live up to it...........
Yes He Can...........................if we help him...........

1 in 91

For the past 6 years I have been able to rattle off Autism stats with the same accuracy as an avid baseball fan can spew batting records, career averages, game highlights.......Except, I am not of fan.

When many of my friends sons were diagnosed, back when the stats were still 1 in 10,000, there was not much out there for parents. The support was questionable and because they rallied, when the numbers got more frightening, parents just like me had organizations to turn to for information, guidance and help. In just 8 years between my friend's son diagnosis and my own son's, the stats went from 1 in 10,000 to 1 in 166. Still, it didn't send chills down too many spines because apparently it didn't merit more funding towards research and therapies....When it became 1 in 150, movement started. Now it's 1 in 91....that enough would be beyond frightening, but what scares me more is the attitude many doctors and Government agencies have taken. This is not necessarily just better diagnosis. This is a very real problem, and it keeps growing. The stats on learning disability is 1 in 6, how are we addressing this very real situation in classrooms that are not adequately funded to deal with the influx of special needs and learning disabilities? What about the teachers who need more support and training to be able to be successful? This is a complete generation of people being affected. What is going to happen when these kids age out of a system that was never really strong enough or funded enough to help them fulfill their potential? What is going to happen if the stats continue to climb?

The push to scare everyone about swine flu, the hurry to put out vaccinations that have not been thoroughly tested, but the incredible dismissal of this very real disorder baffles me. When parents scream they want safe vaccines with no preservatives and a more rational vaccine schedule, we get belittled and wrongly accused of being anti vaccine. Yet,
knowing that many of our children regressed after vaccinations into this disorder, knowing that children do die because of vaccines, knowing there are too many cases of vaccine injuries (Gardasil alone is ridiculous) knowing that there has been a link by several researchers from Stony Brook, Thoughtful House and University of Kentucky, the Pittsburgh school of medecine connecting the Hepatitis B vaccine given at 12 hours of birth and brain damage in males, why then is there such hostility when a simple demand for a safe vaccine, for safe pratices come into question? Shouldn't vaccines be safe for everyone? Isn't that the purpose?

Time is running out. Our children are aging without proper support, funding, therapies and treatments available to them. The price of Autism is exorbitant, staggering, breathtaking, because it is so emcompassing, so pandemic. There is a term out there used in every IEP in every CSE meeting, basically that the education given to our children be "appropriate and meaningful" which obviously leaves a very philosophical and open interpretation as to just what meaningful and appropriate is, because as we parents have found, the school districts have a very different definition of both.

We all look for the meaning in our lives. We all question what is appropriate. We all want to matter, we all want to make a difference. Why would anyone think anyone with Autism wouldn't want the same thing? They worth the research needed and the funding needed to help them reach their potential.

Gabe was almost 5 years old when he said he loved me. We were in King Kullen and he was strapped in the cart. He barely had any language. As I was walking down the aisle, I looked down at him, he smiled and said "I love you"....and I soared. I had been waiting for so long, and I got an opportunity to hear something so many moms would have given their body parts for, and I more than heard it, I felt it....He looked at me and said he loved me, and then just like that he retreated again inside himself. But he was there....I knew it, I knew it all along, he was there......

Meaningful and appropriate.....well, the appropriate thing to do is to find a way to help this community lead meaningful lives. I would love to see the stats on that....................

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.......