Jenn's Unfriendly Comment.....

"Yes I play dress up! I do it for a living, like a retard!" Jennifer Aniston

Imagine having to live with a quote like that before your name, your words forever defining you for a moment in time. Now, imagine being defined by such a word for real. Imagine being more limited by the society you live amongst, than the actual disability you might have. Imagine being dismissed by a negative before anyone can appreciate all your positives, as if being mentally challenged was the sum of all your incredible feelings, your heart, your aspirations, your long labored accomplishments, your joys, your sorrows, your thoughts, your love. Imagine having to rise above the very real challenge of a prejudice so ingrained that the President of the United States and a well respected actress could comfortably find self deprecating humor by comparing themselves to you, and everyone laughs.

I hate how the word "retard" is used. I hate the connotation. I hate the delivery, the enunciation, the harsh way the ta meets the rd....I hate how flippantly it's tossed, and how callously it's received. I hate how so many defend it's use, much like the "n" word, despite knowing the power it has to continue to morally diminish a community of beautiful loving people. From my perspective it seems that political correctness only applies to those who do not have developmental or mental disabilities. I have through the years watched talk show hosts lose their jobs because of an incredibly offensive and discriminatory comment about race, ethnicity, religion or sex, and yet when Michael Savage said atrocities about people with Autism he was not let go. The outrage did not apply to our children.

Words hurt. My husband vehemently disagrees, and I am often told by others that we assign the weight the words take on. But, words sway, words can manipulate truth, words can cast doubt, words can end commitments, relationships, marriages, dreams......as easily as words can be a catalyst towards peace, it can ignite a war....and it can tear apart a persons sense of self worth.

I don't know too many parents of children with developmental disabilities or mental retardation, or both, who would have found Ms. Aniston's choice of words too amusing. I don't know too many young adults, teens or kids with these challenges that would have thought she was hysterical. It's only light when the stigma is removed. It's far from that. We are still fighting for our childrens basic rights. Here, most of us parents of special needs children, dream of our children being able to grow up, be independent, live as good a life as possible, be able to be employed, be acknowledged, have meaningful relationships, be surrounded by family and friends, be embraced by a supportive community long after we are gone, and yet this very privileged 41 year old woman who is obviously overpaid for playing dress up, instead of taking her art seriously, takes for granted everything she is given, and decides to mock it by retreiving the "r" word. She sounded more like a blurb from a poorly written teen comedy than an intelligent, amusing woman. There is a part of me that is tempted to believe that perhaps if she kept her old nose, she would have a little more character.

Now that I got that little catty comment out of the way, the truth is that word kills me. The first person to call my son that word was an adult woman in a car full of kids. My son did not cross quickly enough for her, so she hurled the word at him. She never saw me coming. My son froze at the comment and she yelled out "hey retard, you deaf too?"...Needless to say, to quote my son Will, "the Brooklyn came out" of me, some colorful language followed by the hand gesture dance, and of course the neck roll...it was a workout....She ended up feeling very badly because she did not realize Gabe has Autism. The behavior she modeled for her children was inexcusable. The way she made my kid feel was bordering unforgivable. It kills me because my son knows he is different and struggles with it everyday and yet he is joyous and brave. It is hard for him to keep up with his typical peers simply because the way he processes the world is completely different, and yet he still believes the world is his too....As complicated as his brain, his biology may seem to be, the innocence that dictates every electrical current, every heart beat, every glance or smile is as astonishing as a sunshower. I have spent so many years trying to reach my son, so when I hear him use his words, it matters. It's a sunshower......

Please reconsider the word. For all the Gabe's out there................

And replace it with any other wonderful attribute.............

They deserve it.................

Imagine we live in a world where everyone has a chance at living up to thier potential...................

sshhh...be wehwey quiet....we're hunting Mexicans.....

Rabbit Season! Duck Season! Rabbit Season! Duck Season!!!! Nope, both wrong, it's open season on Mexicans which translates into all Hispanics, because to the ignorant, every person who speaks Spanish is Mexican and therefore illegal.

Hate crimes against "Mexicans" have been on the increase now for the past few years. On Long Island, where I live now, it's been going on for quite some time. Many hard working innocent people have been beaten, and some to death simply for looking "Mexican". Two years ago seven teenagers on Long Island made a sport of regularly hunting down and beating what they called "beaners", culminating with a kill. They murdered Marcelo Lucero, a LEGAL RESIDENT, tax payer, family man who happened to be Ecuadorean.

Throughout history we have learned that HATE hurts, HATE kills, Hate cripples, and yet Hate rhetoric is protected under our Constitution. We see it protect Hate groups rights to voice thier opinions, and for many years in the deep south, families have watched that same rhetoric protect the lynchers, as long as the lynchers are white. While I value freedom of speech, I believe there is a responsibility to make sure that speech is truthful. Slander leads to misunderstanding, it ruins lives, it leads to violence. We have a right to voice our opinions, but we have an obligation to make sure that before we voice them, we check our facts.

I am the daughter of immigrants. I grew up in a borrough that is made all the more unique because of it's ethnic neighborhoods. New York City is spectacular simply because the world crosses it's streets, sets up store fronts, and weaves itself into a cultural tapestry unlike any other. The United States of America could read as A United World with one country. We evolved as Humans before we took on different nationalities, different religions, different ideologies....Our national culture, our foods, our music, our literature, our art, our theatre, our sports, our ideologies, our language, our science, our inventions, are a collective fusion of every group that has imigrated onto this land, and the grouos that were native to this, thier land. How we can sit idly and justify another McCarthy witchhunt is mind boggling. In Utah the private information of people suspected of being illegal (all with Hispanic surnames) social security numbers, names, addresses, telephone numbers etc was released as though anyone who happens to be Hispanic does not have the right to privacy. There were many people on that list that happened to be legal.

What next? Are we all going to be branded? Do I have to worry about my childrens safety because of thier surname, or our social security numbers being distributed around like candy? The Arizona Immigration Law is enticing other states. There are 20 states in particular who are actively looking into it. Twenty becomes Fifty in a heart beat. While I understand that illegal immigration is a problem, I also understand that Hispanics, and Mexicans in particular, are not the only face of illegal immigration. There are plenty of other nationalities here without the proper paperwork. There has to be a better, more fair -way to deal with this, and certainly a more humane way. Legalizing racism is just not the way to go about it. It only gives sick individuals with hurtful agendas license to do harm.

We are a country founded by conquest. Each of the first waves of immigrants came seeking religious freedom, seeking a better life, and in turn they took over a land that did not belong to them. It was already inhabited by the Native Americans. It was taken. Wars took land from the Mexicans and Spaniards. We bought land off the French. A beautifully written Declaration of Independence with the phrase " We hold these truths to be self-evident, that all men are created equal, that they are endowed by their Creator with certain unalienable Rights, that among these are Life, Liberty and the pursuit of Happiness " though only exclusive to white men at that moment in time, is now promised to us all. We should have evolved a bit more as a nation, especially when it comes to intercultural understandings. We should have learned by now from the lessons of our very turbulent past. Sexism, racism and prejudice are still raw wounds despite our strides, and the color of our President. We have so much more work to do. And the fact that today, for the first time, a sitting President went on a daytime talk show called The View, hosted by 5 women, 2 of which are African American, and no one addressed the Arizona Immigration Bill, but did have the where with all to ask the President if he knew Lindsay Lohan was in Jail (he did), or if he knew who Snooki is (he doesn't) shows just how seriously this very serious issue is being taken.

We serve in the military. We contribute to the economy. We report the news. We legislate laws. We vote. We are valuable members of the community. We have built up cities. We are Americans too. I was born in Brooklyn NY. My children are second generation Americans. Our roots are Spaniard, Cuban, Argetinian.....Not too long ago Americans were put into Japanese concentration camps in the US because of thier heritage, despite the fact that they were born here or were naturlized citizens. They lost thier property, thier homes, thier jobs. History repeats itself when lessons are not truely learned the first time around. Hate Hurts. Hate Ruins Lives. Hate Kills. There is always a solution, but the right one never comes from a place a hate, bit raises from a place of understanding.

Hunting season needs to end now.

"Give me your tired, your poor,
Your huddled masses yearning to breathe free,
The wretched refuse of your teeming shore.
Send these, the homeless, tempest-tossed to me.
I lift my lamp beside the golden door."

it never finished with " unless you are Mexican"............

Portraits........

Enchanted by the way her pink words made the ends of her coral lips curl, I accepted an invitation to sit with her a while. I had been walking with my thoughts circling my constricted head all morning, so I welcomed a chance to sit with youth on a weathered bench. Facing the ocean I listened to her, dreamily visualizing each letter bubbled, dots turning into rotund hearts floating above the i's like balloons. The beauty of her 23 years is that her fantasy like view of life remains unscarred despite the state of the world we live in. It's as though there was a fortress of "love will conquer all and guide me" built around her "happily ever after" that she is willing to defend for as long as she can, until her first real heartbreak....and the recognition that more decisions than we care to admit do not stem from a place of love......23 years is a long run.

Do I share with her how just a few weeks ago while trying to get myself ready to speak to my son's teachers, I stood frozen before a mirror? Where years ago putting make up on my face was as natural as brushing my teeth, or showering, now my image on that piece of glass was completely foreign?....How it was challenging to shadow and line eyes that looked back in disbelief over the intense disconnect that I allowed to happen?

It had not occurred overnight, this removal....it cames in waves....10 years ago I was faced with having to buy a few items of clothing and I was completely overwhelmed. No longer was I familar with my body (years of pregnancies, childbirths and refusal to look below my neck) but I also had no idea how to dress it, what I liked, what I thought would flatter me. I suppose it's easy to put these episodes past me when there were so many real pressing issues in my life. But now, its not my silhouette that had me panicked, it was the reality that I was scattered in so many places and so many people that I saw myself more in thier likeness than in my own. Years of not wearing make up, of pulling my hair back into a haphazard ponytail, throwing on whatever fit, willingly putting aside anything I would have liked to do to help family, friends, anyone (because I wanted to help too), years of researching new ways to try to make a difference to Gabe's life, years of trying to compensate time to my other 2 sons because the guilt of not giving them as much would kill me.....wanting to be able to fix it all, be everything my family needs me to be, just loving them was never enough....just wishing was never enough....just doing was never enough....I was never enough......

The outside is a direct reflection of the inside.......No matter how dressed up or down you are, how much you try to hide, or how those in your world see you, you know what is going on inside you resonates, it's just a matter of how much you are willing to recognize and reconcile....

So, my instinct was to paint my face. A self portrait. To sit with a mirror and really think about what I saw, how I saw it, what I felt, and put it on canvas, in color. My words, sometimes so colorful they get me in big trouble, have long lost thier pink edge..... I've discovered my lips haven't....

Do I tell her it's as easy to lose yourself in details as it is to lose yourself in the big picture of it all? That the vows she has committed to memory and romanticized are no where near specific and so it can lead to an overload of delusions of grandeur and massive misunderstandings? Do I tell her love evolves? Love deepens... Sometimes it's not enough, and sometimes it does give us the strength to go on....Do I tell her that love requires alot of work? Would she be able to understand just how much? And do I tell her that 20 years later, if she doesn't awaken from the fantasy and learn to tend to her needs as well, she might find herself having to go back and pick up the abandoned ambitions she once defined herself by, revamp them and assign a new color to her words.

We sit quietly now, watching the seagulls dive into the ocean, the shores lined with seaweed and shells......The deep cerulean blue above it all, the gradation of blue and greens mixed inbetween foaming waters...the soft light biege of sand....and the salted breeze that lingers in your hair and on your clothes long after the dunes have been left behind......

"I love the beach" she exclaims sprinkling pink sparkles everywhere...I watch the bubble "I" bubble "l" bubble "o".........She glitters, it must be the sun........I prefer my bubbles in champagne....my regrets and fears have been covered in chocolate, so if I have to wash it down, it should be light, bubbly and crisp...on the dry side...and if it's French, all the better....I take a breath in and puff out a " stay true to who you innately are, but be open to who you are meant to be, try not to get sidetracked in between, if you are going to try to please most people make sure you are one of those people"....and the words hung over our heads like smokey grey tiaras...dispersing slowly into the spaces between us...........

Shout out to my Special Needs Mom's

Last year I wrote to a yahoo group I belong to, the NSASA (Nassau/Suffolk Autism Society of America) to wish all the moms a Happy Mother's Day....
I was asked by a few moms that I know to please re post it again, and while I will, this is also for every mom who raises a child with special needs...
Happy Mothers Day............



As you all know:
When your child is diagnosed, you quickly learn that everything you thought you knew, trusted, understood, needed to be redefined, rethought, reprocessed. You learn to question everything and everyone. You learn to research, to dig deep into resources that go beyond the financial, the physical, the emotional, the intellectual....

You learn to reach out to a community of parents that have been collecting information and sharing experiences that prove to be as valuable, and in most cases, more valuable than anything any professional could advise you.

Everything that you might have dreamt motherhood would be about is buried alongside everything you had imagined your childs life might be like.

Here's the thing I'm learning through it all.....

My love for my child has never needed to be redefined. With every doctor visit, every evaluation, every CSE meeting or IEP, with every therapy, treatment, program, protocol, camp, special needs extracurricular activity...with every "near" normal life experience, comes the very real experience of loving and being loved in a very unique way, in the most profound way.

Everything that I thought motherhood would look like might have been dramatically altered, but everything motherhood means has been heightened tenfold.

When your child is diagnosed you quickly learn that you have to fight for that childs right to be a child, and to be counted....

And then you realize just how much it counts when it becomes clear to you that hope too, is a complete sensory experience.

So, to all you moms who I know fight so hard for your beautiful children, enjoy your Mothers Day, I hope it's a happy one.

Your Sorority Sister,
Maribel

Special Olympics, Extraordinary Athletes

This past winter, when my family sat together to watch the Opening Ceremony for the Olympic Games, Gabe was mesmerized. "The world is marching together" he said, completely taken by the flags, the cheering crowds, the banners, the waving, and the smiling faces he saw flash across the screen. There were the inspiring stories, of dedication, of going against all odds, doting parents who sacrificed so much to help their children achieve their goals. All this set to background music that would make the most cynical release doubts like butterflies........

By the time March rolled around, word was sent that the Special Olympics would be coming to our area, and a team was being put together. Gabe was absolutely thrilled. Special Olympics to me, virgin to the actual experience, was a tremendous organization built by the Shriver/ Kennedy clan and embraced by a global community. To Gabe, Special Olympics meant a chance to march with the world, waving, banners in hand, smiling......Sign me up, he said, and for 2 months, he practiced with his team, ran the 50 & 100 meter dash, and dreamed big.

What many people who may be familiar with the Special Olympics but who may not have a special athlete in their lives yet, do not realize is just how layered this experience really is. The coaches volunteer their limited time, parents come together to help out the kids, siblings assist in the coaching, it is grass roots at it's finest. Those of us who live within the confines of extraordinary circumstances quickly learn to think beyond limitations and tune out nay sayers. Those of us who love people whose challenges truly redefine "quality of life", understand just how important it is to honor thier spirits, their humanity, and highlight their dedication and perserverance.
And so, on May 2, 2010, we made our way to Brentwood highschool. Gabe's cheering squad, friends and family, banners in hand, came out to see him race.

Here is where I struggle to find the words to describe just what it feels like to sit in the stands with strangers and find that the affinity of happenstance easily replaces names....To watch the parade of Athletes, each group representing thier schools or organizations, walk proudly, enthusiastically waving and completely reveling in their moment is breath taking. Around you families float with emotions as they cheer these joyous people on...The accomplishment worn on the faces of the athletes even before the start of a race brings you to your feet, simply because you have witnessed and understand thier journey. Everyone there is absolutely supportive of every individual competing. Sportsmanship, real honest sportsmanship is what every athelete on that field personifies. Doesn't matter how fast you get past that finish line, all that matters is that you get past it. So you root, and you clap, and you yell, and a tear or two wells up, and you know as you watch those faces light up that all this matters. Celebrations matter. People matter. Support matters. Community matters. Family matters. Spirit matters. Humanity matters. Compassion matters. It's what unites us, it's what connects us, it's what lifts us, it's what makes us all special.

So, While I was watching my son get his medal, I silently thought of and thanked Eunice Kennedy Shriver and her unbelievably generous spirit. I thought of Rose Marie Kennedy and the impact she had on her siblings. I thought of Ted Kennedy and all he fought hard for...one family's life experience and the imprint it has had on all our lives, because they loved thier sister, and felt she deserved better. All our children do.

Here's to all our Special Olympians, to all our heros, to all those who remind us what real courage is , and who wear it proudly on their faces as they cross the finish line........

Way to go Gabe.....you are a winner...............

Autism Awareness

"That must have been so hard for you" she said while carefully readjusting the collar of her crisp white tailored shirt. Those words hung above us like an Alexander Calder installation; primal, structured, floating geometric shapes sustained by my awe and her apathy.
She easily mentioned my son's Autism as though it were a memory, numbed by the distance dismissal provides. She hopscotched through topics du jour with light, balanced words simple and clear. Still, I could not breathe, I could not speak, I could not stop what those 8 simple words started.......

April is Autism Awareness month. Of all months to blog, this in theory should have been the easiest. This time around, it feels different. From the moment I was given the diagnosis the focus was on recovery, or anything close to it. I knew there was no "cure", but I wanted my son to have his voice back, I wanted everything he lost in his regression back, I wanted "him" back. I accepted that he wouldn't be exactly the same, but I wanted him to have a shot at reaching his potential, more importantly, I didn't want that potential to be limited by how others viewed his disabilites. I wanted his potential to be met by how he excelled with his very real abilities. For the first few pivotal years diet, nutrition, sensory, speech, play, occupational, and physical therapies were put into place. Biomedical approaches, ABA, Floor time, RDI, Brain Balance Protocol, chelation, everything done in the hopes that connections would be made, both in and outside of his brain. Circles of communications, opening and closing, Calderesque.......

"If you know a child with Autism, you know one child with Autism"......This is true. Though many share the same sentiments, we parents obviously interpret Autism and it's very individual affects on a family the way different religions interpret the Bible, or different political groups interpret the Constitution. Autism is hard on everyone because you have to come to terms with the scope that it emcompasses, what it means and how it pertains to your family. Autism did not happen to my son, or to me, it happened to all of us. The unwillingness to answer honestly is what leads us to further question....The anger behind many of us is that part of "awareness" is the realization that money is the deciding factor on how your child will get helped and what gets covered up. The trinity group that you are taught to respect growing up, the medical profession, the educational institutions and the healthcare industry are ultimately re-evaluated with every denial of service, or refusal of treatment. Triangular shards cut through space, surfing the air on a Calder Mobile........

"That must have been so hard for you".........It didn't finish...it wasn't cured...it's not in remission...If the first part was trying to wrap my head around it, the second stage for me is trying to wrap my heart around it. For so long I have been quiet about it but I can't swallow the sentiments any more. Apparently I'm full and it's really fattening......It hurts to see everyone outgrow your kid. It becomes more discernible the older they get. In the playground, in the classroom, on the street, on playdates, the sense of solitude parallels the noise, the interactions and the movement. In between there exists a barrier of silence. This crossover that I crave, makes me question if he does as well,or in the same way, or if it's just me wanting this. I'm lost in ideologies, in the philosophical context of what defines normal, where do we draw these lines of what is socially appropriate and why is it that so many "normal" kids get away with behaviors we would never allow our "special" kids to? Just how much do they have to compromise? Why do they have to fully adjust to the rest of the world when it's obvious we haven't figured out a way to be civil to each other yet? What does "independent" really mean? Life skills? I question my own.....Quality of life? Now there's a loaded one!!!! Just as loaded as "appropriate and meaningful"....What is he really thinking? What is he really feeling? How does he see the world around him? I get glimpses, I study him, dissecting every stim, every gesture, every laugh, every random observation, every protest, every joke, every real worry.........knowing full well, that though he may not process everything the same way, he still comes to the same conclusion.......LOVE..........

Where once I described my sons behaviors, his sensory issues, his coping mechanisms to his teachers, to his extended family, to friends, to neighbors, to anyone who came into contact with him, as a means towards understanding, to acceptance, to awareness, now I find myself explaining that much of the new behaviors coming through are typical. His transitions inspire mine. As his expressive language intertwines with his curiousity and his need for self assertion, it becomes clear to me that "independence" is something I am completely unprepared for, emotionally and intellectually. How to begin to prepare my son for a life of purpose, because he matters, is now my new goal. Here is this funny, loving, open, charming, bright kid who struggles to comprehend the innuendos of gestures, facial expressions, social cues. Here is a kid who loves people but the challenge of conversation can intimidate him. There is a world out there that still needs to be enlightened. Our children are not a list of symptoms, of disabilities, a case study, a statistic. Our children are entitled to be seen as whole, as able beings who do have challenges, who are courageous, and who, given the proper supports, can thrive. They are worthy. Sometimes four lines make more than a square or a rectangle or parallogram ......manipulated enough, you get a diamond......

And so begins another chapter. I need to deconstruct to rebuild. I need to seperate the triangle, the circle, the square so that I can appreciate their essence. The red, blue and yellow of it all, the primary, the basic, juxtaposed in a way that brings an awareness to the art in those that process the world in a unique way.... .....

"It must have been so hard for you" she said..........
What she never realized is the harder the lesson, the deeper the understanding
Not to mention the greater the appreciation for good food, good company, good laughs and a good cocktail......................

Its all an art form sustained by a breath of awe................

perimeters

midst intersecting wires I watch him............
head bowed down,
he carefully places one foot in front of the other......
and walks the perimeter of the playground.............

children run around him, past him.......
breeze carries faint hints of shrill laughter.....
his silence visibly sits on his shoulders
as he walks the perimeters of his childhood............

life broken into step by step fragments
family stripped to it's very essence
raw from the complexities of mind, body, behavior
re-evaluating the perimeters, we walk.........

love challenges limitations, this I know...........
for every fear, every doubt, every worry,
deep in the folds of love hope grows.......
slowly revealing itself in each small connection.........

he puts his head back and breathes in the sun....
his eyes closed, his smile generous......
he takes his place on a single file line
and anxiously walks the perimeters of assimilation..........


midst the intersecting wires I watch him............
never quite able to sturdy my heart.......my son beautiful......
the battle between what is and what could be..........
walking on perimeters I need to dissolve

Mending Fences

When it rains it pours.....and when there are torrential winds added to the mix, there might be uprooted trees, broken fences and roof shingles scattered like autumn leaves across the lawn..............

Hard to believe, but this is what is left of the 6 foot fence Gabe scaled when he was just 3 years old. I was struggling to get Carlos out of the baby swing and in just a few minutes Gabe took off his clothes, scaled the fence and streaked through my neighbors yard.....and I hadn't even met them yet. I had to go, ring the bell, introduce myself and then ask if I could get my naked kid off their kid's swing...except he was on the slide....and we knew this because you can hear skin on plastic clearly, especially on a hot day......That summer I learned that Gabe had that Spiderman gene in him, he was quick and quiet, a combination that lead to double locks on doors and bars on his bedroom window........The neighbors moved a few months later.....It took us a few more years to get Gabe to keep his clothes on. You'd be surprised at just how many people feel inclined to comment when it's obvious there is an issue. At first I felt the need to explain, but after the first hundred times, I replaced "he has autism and sensory issues" with "if you got it flaunt it", "he's practicing for the Chippendales call back", "and for his next trick, he will pull a rabbit out of his ass"...... Gabe took the concept of back to basics to a whole new level......

But as I'm approaching my 43rd year, I'm thinking perhaps going back to basics for myself is not such a bad idea. There was a time when going back to basics was essential to get Gabe on track, and to help Will and Carlos along as well. There was a time when focusing on the essential was all I did. It occurs to me that as our needs change, what's essential shifts too....and if there is a shift that is not foreseen, the effects, like an earthquake, can be catatrosphic. I can't help but wonder are you ever really old enough to know better? I know when you know better you don't necessarily always do better, I am living proof.....but after thinking, at 42, I'm still so clueless, the thought that perhaps I might always be, has crossed my mind. Mr. Rogers said that we are every age we have ever been. There in all of us exists that 7 year old, that 16 year old, that 21 year old.....but somewhere after I had gotten that Autism diagnosis, I stopped being 35 and every number since then had been a blur, until I hit 40, and then the confusion about what that meant set in.

When I was first introduced into the Autism world there was so much talk about foundations, and the splinters found in between. What I have found is that I am no different. Never have been. As strong as I thought my foundation to be, there were always cracks...fear and doubt can do more damage than extreme heat or cold. The sensory processing issues that my son faces, the white noises, the delays in decifering what is said, the way he takes in his world visually, the way day to day life feels on his skin, is less foreign to me now. The turning point came when I realized that we may process things differently, but we all arrive at the same place, the place of deep love, fears, frustrations, joy, insecurities, wonder....the difference lies only in the way we manifest these feelings, and they subside when we are able to put aside preconcieved notions or expectations, and just recognize and embrace the expression .....While we manage to repair some cracks, there will always be a splinter emerging, because there is always a shift where there is growth, or neglect.

So as I sit and think about how exactly I will mend those fences and honor the boundaries it contains, I hear the wind picking up again, the tree branches brushing the sides of my home.
When Will was 4 years old he asked me who the sky belonged too...."if the sky that were on our property were ours, if it was shouldn't our fence be higher, and if the sky that was over the United States was American"....I was in trouble early on here.....So I told him the sky belonged to no one in particular, it belonged to all things living. We have no right to fence in the stars, the sunrise or the sunset, and it has no nationality. It has no limits. He then asked then why do we fence in the land. I wanted to tell him to go watch Sesame Street and let me recover a bit, but the thing about Will is that he is always searching, always trying to understand how things work, always thinking ahead.....and I love that about him....."I think we fence in land because we like to feel like we have a little place of our own", I tell him, proud that I kept it simple.....A year later when Gabe jumped the fence, as I was tucking Will in, he said to me " I think Gabe belongs more to the sky than to the earth Mommy"...."why do you say that?" I asked completely taken back....."Because you can't fence him in, he's like the stars"....Words matter....Children take what you tell them and it helps them make sense of thier world, it helps them define thier world, until they learn to see outside of thier world.......The purpose of our fences, the importance of our boundaries, the necessity of seeing beyond what we define as a limitation, and the recognition that the most precious things go beyond yours and mine, it's universal......some things are meant to be held on to, somethings are meant to let go, and somewhere between the 2, I have to find a way to just be...

So what is essential for me at almost 43? Well....for my next trick I'll pull a rabbit out of my............hat....Won't catch me scaling any fences naked....ouch.....splinters......foundations.....
I have a few months left to figure it out..................in the meantime, there are repairs to be made.....

March came in as a lion and left a sad surprise.....

Karate has been part of my sons lives now for the past 5 years. A young energetic sensei opened a school near by and my youngest was my first to join up. He was 5 years old, had Power Ranger aspirations. The way he smiled and bounced through that dojo he looked like Tigger in a gee....before I knew it, Gabe and Will were sporting the gee too........

Because the school was new, there was a certain sense that we were all starting this together. Parents would wait and watch through the glass doors. While the children praticed thier pinions, we went from exchanging pleasantries, to exchanging opinions....not to mention many jokes and a few cocktail recipes.....In the beginning I practically lived there, with 3 boys in 3 seperate classes, each going twice a week it was mayhem, now my children far more independent, I had been dropping them off and picking them up, barely ever finding the time to sit and watch and chat.

Well, today, as I walked into the school, the sensei came to me to let me know that one of the dad's that I most enjoyed talking to, passed away. He had a massive heart attack. His son found him. His wake was tonight, he told me where knowing I would want to attend. Here's the thing.......Mike's face would light up when he talked about his wife, his daughter, his son. This man wore the pride he felt for his son, for his family, like a king would wear a crown, or Jennifer Lopez would strut in Loubutins......He was what my people, the Cubans, would call "un buenaso", the Barbara Steisand Brooklyn translation would be he's "like butter"...basically a genuinely good guy....He wrote computer programs, but was laid off and ended up becoming a manager at Home Depot. His goal was to finish a program he was creating that he felt would revolutionalize the business world....how? He explained, but it was way over my technically challenged head.......
There are so many conversations I can immediately flip through, 5 years worth, to be exact.....but the one that stands out came when I turned 40 and started to talk about my midlife "reassessment"....and my absolute bewilderment as to where my time had gone....crazed I would say if "I paid attention to where I put it, then I won't have to wonder where it went"..he would laugh and say "if you paid attention your shirt wouldn't be inside out, your socks would match.....and you wouldn't have pencils sticking out of your head"....quickly followed by "stop being so hard on yourself, relax 40 turns into 50 sooner than you expect..Breathe, enjoy, with all that goes on, you have to let some go".......

Except he was only 45. Here I was wondering what I'll be when I grow up, what direction I need to take.......wanting so much to feel like I knew what I was doing....wanting to be respected for my artwork.....wanting to actually feel like I was good enough......and yet, my first thought for Mike was not if he got to finish his dream project, but of all the dreams he had that he would miss out on.....Watching his children grow, graduate, marry, become parents, all while holding his wife's hand.....I couldn't help but be completely heartbroken for his wife who was faced with the nightmare of having to nurture her children through thier grief, then have to walk into a bedroom suspended somewhere between what was and what remains. Those spaces inbetween.....

Tonight, as I waited on the recieving line, I looked at the collages set up....large framed images of his life overlapping one another....He went from his cradle, to cradling his own children in his arms....a lifetime of frozen moments....the most important moments in his life....and it was all about the people and the places that mattered to him..... I couldn't help but think that perhaps what defines me has more to do with who I love, how I love ,than I ever gave credit too....here I was struggling to find myself again, complaining how easy it is to lose yourself to the demands of motherhood, matrimony, and life in general....when easily I am found in them all....wanting to be respected for my art, wanting to be at a place where I felt completely confident, dreams of a legacy left on museum walls (delusions of granduer), suddenly doesn't feel as important as sitting down to the dinner table as a complete family, or watching my kids ride ahead on thier bikes as I trail behind with Reeses.....going to a concert, or to a stepping up ceremony.....to a graduation..... watching them jump into thier pool.....being present to help my sons transition from boys to men....holding my husband's hand........"breathe...relax.....enjoy".....

Still I think of those glass doors, and the lessons learned on both sides................
and my heart breaks for my karate friend................

Paper Hearts

"Dreams are like paper......they tear so easily" Gilda Radner

These past few months the weather men have been bombarding us with their versions of the Terror threat, red, orange, yellow colors and all, over snow, snow fall amounts, blizzard conditions, etc....Last week we were lucky and those predictions ended up floating off to the ocean .....Wednesday and Thursday, we ran out of luck. Blizzard came, schools closed, kids were thrilled till they had to shovel, and I was left to figure out how to make the most of it....

Routine and structure are particularly important to kids on the spectrum. An unexpected snowfall, a sudden change in plans, a shift of any kind can kick the anxiety levels to new heights.
Last year Gabe would have been left upset, confused and weepy about the day off from school. This year, growth. There have been so many unprecedented changes in our lives lately, I suppose his ability to generalize left him understanding that we have other choices. So this time around, when school closed, like a typical kid, he was actually hoping it would ....What am I going to do now? He asked, hoping I would say "play computers all day kid, knock yourself out"....."We are going to read, do practice ELA's, work on your math and then you can decide on your reward activity".....No tantrum, no negotiating, no avoidance behavior, he went straight to work with me, trying hard to answer the reading comprehension questions and do the essay required. It's an extraordinary challenge for him to be able to answer inferentially. We haven't even begun to scratch the surface of what is required to master this task. He struggles, my heart breaks, he blames his brain, I swallow my frustration (which by the way tastes like chocolate, cause it is.....) he stays with it, I humbled, watch him honestly try.....
He earns computers.....I gain 7 pounds.....so it goes.....

Friday came and I got up early to make breakfast. These people were going back to school and I wanted to make sure they got on that bus in time. They have winter break next week, so I needed my day to catch up. I called out for them to come, 2 boys appear...no Gabe...where is Gabe....turns out, Gabe was downstairs making a special poster for his teacher. No prompting required. He loves to celebrate everything and anything, Valentines is no exception. He wanted to do something that would make his teacher happy. Quietly he snuck downstairs without anyone noticing, and went to work. I thought I would see a card, or a perhaps a sheet of paper with his animal drawings on it, but as I heard him come up the stairs and open the door, I was stunned. This kid had turned a white poster sheet into an expolsion of colorful hearts....He was all smiles, thoroughly proud of his display.....Here I was chugging coffee, clawing my way through the morning, and just like that with one grinning kid behind kaliedoscopic hearts, I woke up....

Years ago, when Gilda Radner succumbed to her battle with Ovarian cancer, I remember watching a tribute to her. There was this short black and white film they played where Gilda beautifully played this delicate character and at the end she says " dreams are like paper, they tear so easily" ......I always loved her and thought she was absolutely brillant, and this black and white image, these words stayed with me forever intertwined with her, and art, dreams, life...And then Gabe comes along, and in so many ways he tears and cuts, and creates a collage of it all, and I think yes, dreams are like paper, they tear so easily.....but then you can piece them together, and create a whole new reality, and it could be special too.....

I think back to everything we have been through. Five years ago, he couldn't answer a question and barely had language. Today at 10 he can answer basic question though "why" and 'how" still test him. Developmentally delayed he still struggles with what is age appropriate. Or what is appropriate in general. He still is trying and learning to process the world around him sensorially. Gabe's unique challange is making sense of a world wired completely differently from him, and finding common ground. I comb through all this and keep finding that we are not as foriegn to each other as we believe. Extremes cloud, but common ground is always possible when we are all willing to open up and reach over...

"I wanted a perfect ending. Now I've learned the hard way that some poems don't rhyme, and some stories don't have a clear beginning, middle and end. Life is about not knowing, having to change, taking the moment and making the best of it without knowing what is going to happen next"..........Gilda Radnor

"It's always something".......Rosana Rosanadana (Gilda Radnor)

Happy Valentines Day..................

Breath

This week the prompt for Haiku Bones is Breath......
I suppose it's my Gemini ways (would that make me "zodiacally" predisposed?)...but I can't help but think of it in 2 very different way..........

First Haiku that immediately came to mind:


Ethereal Breath
oscillates mid earth and sky
uncertain of it's place


The second:


smiling he whispers
love, you take my breath away..............
Marlboro Light lit

St Vincents Hospital

For 5 years I would religiously stand at an underground platform, board the E or F trains, and take a 45 minute ride to West 4th Street. Marching with the others in unison towards the exit that would take us up the stairs towards the light of day, I would always brace myself for the moment I would feel the fresh air back on my face. Coming out of that train station for me meant walking into a world I loved exploring. For anyone who ever felt like a misfit, lost in the clouds in left field or on another playing field all together, the Village feels like home. So I was at home.........

There are staples in any neighborhood. The Village is no exception. When it was my playground, back in the mid 80's to early 90's, the park was a gathering place for everything from lunch al fresco, struggling musicians, planned protests, planned celebrations....it was a place where mothers took thier children to play, students congregated, professionals took a breather, and of course drug dealers made discreet or not so discreet transactions. People slept there. The mentally ill sought solice there. Soon enough, by the end of my daily journey through those streets, many elderly, many newly homeless families would congregate waiting for St. Grace to open thier food kitchen there.

Another important staple to the community is St. Vincent's hospital. I first came to learn of them my first year at NYU. There was an emergency in a classroom, the paramedics were called and the student was sent to St. Vincents. The student, who had suffered a seizure, was foriegn and did not have insurance. There was a worry that the student would be stablized and then discharged immediately, without much concern over what could happen to her. When she returned to class weeks later she revealed that it was a grand mal seizure and after extensive testing had been put on medication she would need for the rest of her life. Four years later, she graduated with me.

Now, St. Vincent faces the possibility of closure............

Just like this young student was treated years ago, so many insured and uninsured, needy and not so needy have been treated there. Location, location, location, prime necessity for immediate care in a city where closing one hospital easily overburdens the 4 or 5 surrounding ones. This hospital is a haven for it's community. Facing a $700 million dollar debt, and a possible takeover by Continuum Health Services (which operates St.Lukes, Beth Isreal and Roosevelt Hospitals )
the hospital faces a moral dilemma, a takeover that could save it, but at a great disservice to hospital care. They would close all acute care units including inpatient care and surgeries, and would scale back emergency and trauma. They would provide ambulatory services leaving it really as an outpatient facility.
Residents of the west side would be left without a hospital close enough to handle thier emergencies.
I remember St.Vincents Hospital being in the forefront of AIDS care back in the early days of this tragic epidemic. Many of my friends turned to this particular hospital during the mid 80's because of thier reputation. St. Vincents is steeped in history, it is the heartbeat of it's economically diverse community that would otherwise be disgarded.

The revelant irony is that this institution of over 100 years, that has helped the poor, would be left bankrupt.

Here's the question, why is AIG to big to let fail, but a hospital like St. Vincents not important enough to save? Wouldn't Universal Health Care help hospitals like this? Wouldn't a health care plan with public options be able to revitalize our financially strapped hospitals? If our government can step in and save financial institutions for fear that thier demise would futher throw us all into a recession we would not be able to recover from, couldn't they pass a health care bill that would help save our hospitals, and in turn save our lives? Aren't we a precious commodity as well? Aren't we worth investing in? Isn't the health of our communities important too?

It's been a long time since I've been on that train ride, climbed into that world, or sat in the park.
It's been a long time since I've been to St. Vincents, or served lunch at St. Graces......but I don't have to be a constant presence to know just what St. Vincents means, or what it feels like to walk with your thoughts while accompanied by the embedded creativity of a neighborhood layered in culture, art, humor, compassion and awareness.......
it feels like home.............

Uncanny

Haiku this week is Uncanny


These uncanny times
when CEO's can resign
in a terse haiku

Promises, promises

How many elected officials does it take to change a light bulb?
I don't know, I'm still waiting to see just which one will figure out a zoning issue........
So I suppose we'll be sitting in the dark for a few more years.........

You know how they say that the definition of insanity is doing the same thing over and over and expecting some change? And then they say practice makes perfect? Does that mean there is a chance that you can be perfectly insane?

Then I'm there. Yes, at least I've achieved perfection in some capacity.....see, it is possible, I'd like to thank all the little people (figuratively, not literally) who pushed so hard to get me over the edge and then some.....without you, why I'd be sane......and what fun would there be in that.............

Here's the thing......I know in the scheme of things, global, universal, hell, intergalactic, what goes on within our lives means little to nothing......but, I insist on holding onto a bit of faith in just about everything and everyone.....(hint, lunacy right there)...and I really need to believe that it's all important, it's all good, and that we all matter.......So when I find myself seeking solidarity in other ASD parents, when I find myself fighting an uphill battle over cell phone antennas in my back yard, when I find myself trying to make sense of my sons reading issues, trying to figure out just what is going on in his brain that could give me a clue as to how to best help him.....I can't help but hold onto the hope that somehow there is a purpose for everything. And within that purpose, there is promise.

That being said, as I listen to the stories my friends tell me about their older children with ASD, and what lies ahead, my heart breaks. These kids have purpose, they have promise, yet they do not have the programs or resources available to bring it out, cultivate it and help train and place them in jobs where they would be able to flourish. Where you fall on the spectrum, it seems, seals your fate.....If you want more for your child, you need to do some intense brainstorming sessions to figure out how to finance the endeavor. As long as you have an endeavor mapped out...........

And I think if our elected officials stumble and drop the ball on simple things like if a cell tower should exist in someones back yard, what will they do when asked about what they can do to create the programs, living arrangements, independence training, for some the extra schooling, the vocational training and job placement needed for this increasing growing population of ASD kids?????.............I can't sit in the dark waiting for that response. I don't think anyone can......
I have spent the first 7 years fighting to get my kid verbal and interactive enough to be somewhat connected with this world....now my focus is shifting, and I'm realizing I can't keep doing the same things and expecting different results.....
Be the change you want to see? I need a clear vision first.......nice, visions.......sign 2........

There is purpose, there is promise...Then there are the promises we make to ourselves, and the promises we make to our children....How we address the issue of just what happens to our kids after they turn 21 will determine how well we've lived up to our promises.......and if they were allowed to develop theirs.........

AARRGGHHHH

For the past few days I have been overwhelmed. It has been hard to get to anything that could be seen as a luxury of time, like blogging in this case, so I decided to try to make sense of it right here....take a second to clear my mind.........now that I only have a second....

Lately reading comprehension has been consuming me....Gabe's right brain deficits courtesy of Autism and ADHD have him struggling with the main point. Because he has ADHD too, focus now becomes an issue. Funny how as things get more complex, you are able to sometimes see when it's the Autism, when it's the ADHD or when it's just him at 10....it splits up into different areas and then interlaps...much llike the workings of a brain......Anyway, I have been reading "Reading in the Brain" to try to understand how the brain in general processes reading and then what happens when something goes array....and how to fix it.....I'm half way through the book, and learning so much, but need to go through it rather slowly cause Lord knows my brain isn't what it should be.......So I'm immersed in all this, reading "How to Raise a Thinking Child" as well and reading with Gabe....tearing things down.....trying to really get him to think about the "why" and the "how"......reviewing all the visualizing techniques from Linda Mood Bell and trying desperately to hide the frustration and the fears.....wondering how it is that both he and I could be so lost in between the grey and white matters.....between the left and the right, the temporal, cortex, cerebellum and the frontal lobes........Perhaps in the end it's not balck and white, but white and grey where real answers lie.......But for now, teaching my son to think as we do raises so many questions, mainly just because he can't express an answer like we expect him too doesn't mean he doesn't have a valid one. I have always said literature is subjective, but what I do need to know, when I strip all the emotional, moral voices down, is that he is understanding what the text is about so that he could take away his own interpretation of it...whatever that may be.....and right now, honestly, sometimes he gets it, sometimes he doesn't........So why does it allude him....why does it sometimes connect and sometimes not????Wait, doesn't this happen to us all in other things????


So, in the midst of all this I get a knock on my door from a concerned neighbor who had gotten a letter from the water company. Did I get it???? Yes....Did I read it? No......So I found out what it said.....basically, they will be installing cell phone antennas on top of thier water tower....the one behind my backyard.....and my nieghbors.....Mind you they only bothered to alert those of us who can see it....The letter was matter of fact, and ended with a sorry for any inconvience.....I suppose by inconvience they mean "any health problem you will have to face, the cancers, the immune issues, the migraines, etc"....because no where in that letter did it mention the truth....that the closer one lives to a tower, the greater the chances of getting a very serious illness. They don't mention the low grade constant radio waves emitted from those antennas can effect every bit of life around them. They simply say sorry for any inconvience the construction of this and the closing of roads may cause......what about the pain the diagnosis costs, or the devaluing of our already devalued properties? Are they going to pay for all of that? No....they keep the profits and they make decisions regarding our community, the one we pay taxes through the nose to support, and the don't even have the courtesy to advise us all.....just mail a few of us a letter hoping that we will throw it away without ever bothering to open it.......
There are schools here. There are families here. There are already plenty of children living here with Autism, learning disabilities and cancer. There are small Mom and Pop shops here....there are shorelines here........life is lead here....................

So I've been researching......and I have been calling my Senator, my legislator, my assemblyman, my county executive, I spoke to the water company and it's chief engineer......and I now know why it is that education is always swept under the proverbial rug.....if our children grow up to be thinking adults and at the same time happen to have an iota of ethics, they will find themselves in big trouble.......And I wonder, just what part of our leaders brains, the CEO's brains are they using to justify harming a community, harming an envirnoment, denying any of it despite the data and the controversy, and still are able to try to sell themselves as having our best interests at heart??????

For years we have been saying that the only fair way to get things done, including Universal Health Care is to get the lobbyists out of all the houses......Last week, the Supreme Court made the unprecedented ruling of allowing corporations to give out limitless amounts of money towards candidates as campaign contributions.....slippery slope of epic porportions. When a corporations first amendment rights is equated to an individuals we are in big trouble......
Because we all know that the average citizens rights are trumped time and time again by big corporations, and anyone who has any doubt will have that diminished instantly the day they get a letter in the mail followed by a knock on the door.....Cell phone towers, my friends, do not belong in anyones backyards, or near any residential area.....Funny how quickly porn is cleaned up because it's bad for our kids and the moral outrage attached to it....but radiation? Ah shucks....what's a little radiation........what is wrong here?????????

And not for nothing...but here's a brilliant idea....you want to fund Universal Health Care? Then have the companies that neglect to follow the EPA guidelines and the companies that insist on making fast food even worse for you pay a special fine and tax into it.....I'm just saying, it seems fair.......No, wait, they are the ones who pay the most towards campaigns...I'm going out on a limb here, but I'm guessing the more they pay into it the more damage they can do to us all and the less they are held accountable.....Does that sound democratic to you???? Hmm......my bad......

So, lets review...I have spent the last 7 years trying desperately to recover my kid, buying organic, adhering to special diets and vitamins and supplements, incorportating all types of therapies, play, behavioral, educational, sensory....chelating him....reading everything I can get my hands on......fighting hard to get him verbal and well enough to get into an inclusion class....and then I find out that right in my backyard, a few feet away from his trampoline, his pool, his basketball court, his play area, low grade radio waves will be constantly present, like the air we breathe........My brain is going to EXPLODE........... because I just don't get it, I really don't.........................

Peace

Prompt word for Haiku Bones is PEACE......
Stretching my fingers for this one......



New life in my arms
eyes closed I take in his scent
he, peace of my heart......

For a moment, I
delusional claim forever
knowing peace will leave

and I will be left
wondering if compromise
would ever be enough

ideologies
sprays peaces of us about
and expects gardens...........

he picking flowers
proudly hands me a daisy.....
he, peace of my heart

Weight.....I'm thinking.....

In the past few months, just about every girlfriend I speak to on a daily basis and some on a not so daily basis, has had an issue with her weight....On top of all our collective real issues, unemployment, special needs children, children with other needs, husbands, hormonal imbalances, mid life questions, mid life reinventions, health worries, foreclosures looming, entering into the sandwich generation, just to rattle off a few....we still obsess about our weight, wondering what the hell happened and then delving into total disgust with letting ourselves go......

So I started thinking about this, because Lord knows, not only do I worry about everything, but I must over analyze and over think everything as well......Where would the fun be if I didn't?????

I never had a problem with my height, weight, looks until it was pointed out to me just how inadequate I was by someone else and their standards. I was about 9 years old at the time and until that moment, I was just me, being me. A typical 9 year old kid who loved to draw and read and dance and watch the world around me....who believed fiercely in fun, and even more deeply in Santa Claus and all things fantastical....and who feared death and worried about my mom's health....who thought television was the best invention EVER...Until then, whether I was good or bad rested solely on how I chose to behave, not what I chose to wear, how I looked in it or what my BMI was....there was no BMI.......

It starts young. Most women can spit out weight, dress size, and shoe size to match each pivotal milestone in her life the way guys can retrieve stats on their favorite players and teams....Case in point...Wedding day, October 16, 1993..I was a size 6, at this point weighing 118 pounds, size 7 1/2 shoes that were killing me....Day I became a mom, May 29, 1997 weight 160 pounds, size 10 Maternity, shoe size 8...my feet had swollen as did the rest of me with a difficult pregnancy....Present day, congratulate me, I am about to obviously give birth to a huge bundle of what I'm hoping is enlightenment because I'm closer to the weight I was when I was nurturing a new life inside of me than when I was romanticizing the life I thought I was going to lead. Here in lies an issue....The emphasis should be the life we lead, the process of realizing who we are, what is important to us, what makes us feel alive. How we accessorize it should be the afterthought. How is it that I question how I let myself physically go, when I stopped letting myself emotionally be at 9? When we speak of healthy weight, really how healthy is the conversation, when it doesn't begin to address the bigger picture? What is healthy or balance here in an environment that harbors eating disorders (me, included, I was anorexic), obesity rates of epic portion, and doesn't see a correlation with lack of after school programs, poverty, lifestyle, super processed foods, fruits and vegetables that have been so genetically engineered they are no longer as nutritious as they once were,(not to mention all the pesticides, chemicals and perservatives used) artificial sweetners??? Dr. Martin Luther King Jr said it brilliantly " All progress is precarious, and the solution of one problem brings us face to face with another problem." Depression, stress and emotionally eating go hand in hand, easy to say put the cookie down, but when we say put the cigarette down we get attacked, yet put the cookie down seems justified.... Because we are conditioned to degrade someone with a "fat ass" comment, because it's easier to blame an overweight person for thier lack of self control and say they are unhealthy as a cigarette gets puffed away and we all know the cancerous ramifications of it, the emphysima, and the absolute hold nicotine has on the addict.....It's also easy to overlook a situation we are all a part of, and that we all have helped to not only create but continue to thrive........

When we women are overwhelmed the first thing we do is punish ourselves by berating our failures to maintain our physiques, we are doing what we are taught to do early on. Every time anyone wants to put a woman down they attack her looks first, then they go for her sexuality, and then her intelligence. We do the same to ourselves and to each other. It's a vicious cycle and it goes beyond the refrigerator, the therapist couch or the gyms....It starts with what we tell those 9 year old girls and how we modeled the behavior for those 9 year old boys as well....It's how we behave towards ourselves. It's what we monetarily support, what we purchase, what we choose to watch. It's what we designate as beautiful, acceptable, and what we say must then fall at a waistline...It's about allowing other people to measure our worth with a scale and a measuring tape, instead of taking stock of what makes us feel beautiful. When we demand better perhaps we will get better. A healthy weight fluctuates from person to person and where they are in their lives. Healthy weight and healthy behaviors are also not necessarily synonomous. I will never be the same as I was on my wedding day, but I would like to be able to run around and not have to wrap myself around every mailbox trying to shove my heart back into my chest.....I know I have to eat healthier because I have witnessed first hand the curative effects of good food....and I would never allow my boys to eat like I do. I know I have to exercise more consistantly because it's so good for your mind, and with my family history I fear losing it....
But when I think back to that young 9 year old and later years....what comes to my mind for each year first is not the dreams I had but the size I was.....In junior year of high school I was 5'4", 85 pounds, a size 0. My menstrual cycle hadn't begun yet and wouldn't until a year later, when I started to eat better. My fingernails peeled off....My hair fell out....and yet, I don't remember what inspired me....I was given compliments for my thin frame. I couldn't see past it, I still was enormous, I was still far from a perfect weight.....I still didn't look like everyone else......It didn't occur to me that I wasn't supposed to because I had been conditioned to be just like everyone else.....So, now that it's evident that if I sneeze I can possibly rip my pants......and that exhaling takes on a rippled effect on the rest of me......that when I did my exercises today for the 3rd consecutive day a lounge is starting to resemble a little less of a cow tipping and a little more of an actual move.....I'm going to try a novel approach....I am not going to obsess....I am going to try to reconnect with the things I've loved along the way....I hate exercising, but I love dancing...used to all the time....maybe reconnecting with the life I should be really experiencing can shed the pounds a life of denials and fears puts on.....There are about 10 pounds of reading comprehension anxieties just waiting to jump on my ass.....so.......I'm gonna bust a move..........I'm going to dance it out.....Dancing Queen.....maybe not long and lean or 17...ok, short and round..oops, curvy, and 42.....never the less Dancing Queen......letting myself go......in order to run free................ok, walk....3 vaginal births, running can run it's own risks................

Incandescent

This weeks Haiku Bones prompt is Incandescent......

Here goes......


incandescent youth
illuminates the night skies
beatnik dreams dance by.................

One Beautiful Dreamer.......

In the waking horror of an earthquake ravaged Haiti in ruins, I sat as many have, in front of a television screen. In shock, watching the most heart wrenching images , I was praying for people I would probably never meet, hoping that there would be more rescued than recovered, hoping they would be given the essentials that they desperately need, hoping they will find the strength and support to rebuild.....Seeking out ways to contribute...

Immediately after the quake the world responded.
Makes me wonder how is it that a natural disaster of this magnitude could inspire so many to reach out and want to do what is right.....and yet, when it comes to man made disasters, the approach can be so different, even if the circumstances and the urgency is as intense. Dr. Martin Luther King once said "Whatever effects one directly affects all indirectly. I can never be what I ought to be until you are what you ought to be. This is the interrelated structure of reality"....I suppose it is also the interrelated structure of humanity. How can we claim to be a global community when so many of it's neighborhoods are living in the most unbelievable turmoil, poverty and violence. Lately even in our own backyards we have seen families lose their jobs, their homes, their livelihoods.... How could it not be that "an injustice anywhere is a threat to justice everywhere?

I think back to the times that helped shaped Dr. Martin Luther King Jr's character. I think back to the images, the segregation, and the intense courage it took to stand up for basic human rights. "We will remember not the words of our enemies, but the silence of our friends" he said, and truth be told, I cannot remember the speeches of those against civil rights, but I remember the images of people who you could tell raised their families in churches and paid their taxes, looking straight ahead, just walking past the dogs and the water and the non violent protesters being violently attacked. " The ultimate tragedy" he said " is not the oppression and cruelty of bad people, but the silence over that by good people"....

"Nothing in the world is more dangerous than sincere ignorance and conscientious stupidity"...

"Our lives begin to end the day we become silent about things that matter". Perhaps we need to think about what really matters on a global level. Where our responsibilities begin and end, how do we define ourselves really? The UN has a Universal Declaration of Human Rights that specifically details article by article each freedom, each right....and yet there are so many breaches of that Declaration by so many nations, including our own. Some obviously much more severe than others.....And still, how do you address such overwhelming situations, when you are overwhelmed? How do we begin to address the worlds problems when we can't seem to address our own, ( or even hold ourselves accountable) and how could we not begin to do either? "All progress is precarious, and the solution of one problem brings us face to face with another problem".......MLK Jr

I look back on Dr. Martin Luther King Jr's most brilliant speeches, his life, his challenges, the courage it had to have taken to have moved ahead and tackled a very volatile subject for the sake of his children and all children. His words are sadly as relevant today as they were 40 somewhat years ago for different reasons. " I submit to you that if a man hasn't discovered something he would die for he isn't fit to live"......In the Christian faith ( I am Catholic) we are taught that Christ died for our sins. In dying He gave us eternal life. I believe he died for the same reason Martin Luther King Jr died, Abraham Lincoln died, and every brave enlightened person who fought for the basic human rights die....because there are not enough people willing to stand up with these most prolific of teachers and say "enough" to what is so fundamentally wrong within our society. They too have died, in essence, to give us all a better life here on earth.

"Every man must decided if he is to walk in the light of creative altruism or in the darkness of destructive selfishness" We all have choices. " A right delayed is a right denied" How many rights are being denied right now?

He said "Human salvation lies in the hands of the creatively maladjusted", but at this point, I believe it lies in every hand, and in every heart for real salvation, for redemption.....

We need more Martin Luther King Jr's. We need the men and women we have elected to begin to take their offices a little more seriously than their pockets or their campaign contributions. We need clear leadership. I am not giving hope on my man President Obama, but I am making an effort to be more aware of just how the fabric of humanity is woven and interwoven.......

"Hatred paralyzes life, love releases it. Hatred confuses life, love harmonizes it. Hatred darkens life, love illuminates it.....MLK Jr

" I have decided to stick with love, hate is too great a burden to bare"........MLK Jr

" Everything that is done in this world is done by hope".......MLK Jr.....

And everything that fuels hope is found in love..........including courage.....

Thank you Dr. Martin Luther King Jr......

Trembles

It's not within dark
that I tremble insecure,
but in your moods dear..............

Music to my ears.....and spirit.........

Overture...dim the lights....this is it....tonight's the night....and oh what heights we'll hit....on with the show this is it!!!!!!!!!

And so it began, a dimly lit high school auditorium, chairs arranged on the stage in a semicircle. On the podium to the left, a glass of water and a mike.
Rows upon rows of parents, grandparents, siblings, aunts, uncles, teachers...seated comfortably, coats saving places, camcorders set to record, cameras ready to go......
We were standing all the way in the back, not a space to spare. My mother, Carlos, Will and I waiting for it to start....

A few years ago a psychologist at the special ed school that Gabe attended told me that I needed to bury any dream of normalcy for my son. She had said, thinking it was in my best interest, that I was doing a disservice to myself believing that someday he would be able to participate in the world normally. She said he could never catch up. What I found so offensive was that she would think for a second that she was sparing me a lifetime of hurt if she just would get it through me so that I wouldn't have my hopes up. My son had Autism, I wasn't sure what that quite meant and yet she thought dashing my hopes would spare me? Spare me what a diagnosis like Autism hadn't? Here's the reality of Autism. It changes everything. It changes plans made, unmade, unrealistic, not so unrealistic. It alters life as you know it. Families are redefined, roles are heightened, deepened and widened. It's not easy, it is not smooth. But there is still a whole lot of humanity there. There is still a soul, and thoughts, and feelings, and life, and a whole world inside this most precious person......And it by no means signifies what can't be done....My son has abilities too. People with Autism have abilities. It's our inability to acknowledge it that makes it even more difficult for them. And to try to knock any hope away, as "helpful" as she meant to be, was cruel. Hope sometimes is the only thing that sees us through.

So, as the children came out in single file with instrument in one hand and tugging a shirt or fixing a ribbon with the other, I saw Carlos looking around trying to find us.....and then I saw Gabe come in doing the same....They found their seats and assumed their trumpet playing position....The music teacher came out, bowed, waved her fingers and there was music.... For a moment Gabe was indistinguishable. For a moment hope kissed his forehead and just let him be. No prompting, no shadowing, no covering ears, no tantrums, no anxieties....just Hot Cross Buns.....Mary Had a Little Lamb.....Every parent sat recording and taking pictures of their children, while I held back tears and watched the ordinary become the extraordinary......What we take for granted, and what we learn to appreciate......what we feel we are entitled too, what we swear we are promised..... what we learn to make the most of.....the before's and after's.....the mistakes made, the lessons learned.....nothing in life is simple....nothing in life really is ordinary......nothing in life is normal.......but everything and everyone is purposeful, and significant......The music dies down. Carlos, all smiles, grabs hold of his trumpet like a weapon and gets ready to walk off stage. Single file they retreat, all except Gabe, who turns midway and comes back center stage to take his bow....three bows, one to each side of the audience....he walks off left stage and swings around at the last second to throw the audience a final kiss.....Everyone claps and roars with laughter. Everyone who knows Gabe chants his name.....This kid knows how to make the most of his moments. He knows how to seize the day. He will be flapping excitedly down the hall, this I know....once again the difference will be apparent.....but for that one moment, he was a star.......

As the last song was sung, a mother wheeled her son up the walk way and out the door. Her son was obviously very ill and fragile. His balding head and her eyes said it all. Their lives are altered by a diagnosis. All plans made and unmade, realistic and not so realistic are completely changed. Time, family, everything has been redefined for them. Hope is subjective, I suppose most everything is......and while the moment is all we have, making the most of it is all we can do.
I am grateful I got a chance to see my children up on stage excited to be part of a school band....playing trumpets....Carlos singing in a choir....Gabe taking a bow.....My hope, subjective as it may be, is for that little boy to be able to beat the odds, get healthy and get a chance to do the same.......and for his mom to be standing in the back row, waiting for the lights to dim and the music to start..........

A night at the ER......

Mothers of children with special needs are often accused of putting one child's issues ahead of an entire family. It's easy for the outside world to make such declarations when all they see are moms fighting for their child's rights, medical, educational, social, etc..etc....but it wasn't too long ago when the very thought process was to blame the mother for her child's autism, claiming her frigidness deterred her child from learning how to connect....Refrigerator moms....either way you slice it you are the star subject of every person laying on a therapists couch....what is perceived, how it's perceived is very subjective...but here is a fact...We mothers of special needs children believe all our children are equally special....and while it might take a tremendous amount of research and work to raise one child in particular, it by no means strips the importance or the intense unconditional love felt for her other children.

This past Wednesday I ran to the Pediatric ER at Stony Brook Hospital with my youngest in hand. He had suddenly developed a very high fever, chest pain, neck pain and a severe migraine. A call to the doctor's hotline confirmed what I knew in my gut...this was disquieting, this was looking pretty serious, this needed immediate medical attention. The idea that they had to rule out meningitis, bacterial and viral, jolted me to the reality that my "typical "child is as vulnerable as my ASD child, that being typical doesn't spare or save you, and I was terrified.
My vibrant boy now limp and barely able to move his head was quickly moved into a private room, a team of nurses and doctors decending on him, connecting him to an IV full of very strong antibiotics, blood drawn and preparations made for a Lumbar Procedure...a spinal tap.....He, just 9 years old, so thin and lithe....laid quietly trying to contain the pain in his head. I, not so quiet, stood heavier than usual, desperately trying to convert the fear into positive energy. He was admitted after the initial tests, they needed to run a few more cultures to rule things out.

Now, to everyone that did not know I could have been a mother to any more children, I was complimented on the keen eye I kept on the meds, the reactions, the time to call to have them changed....They called me Doctor Mom and Mama Bear. They were impressed that I not once had dozed off....when they came in through the night I was there, vigilant, keeping watch.

By the following afternoon we were discharged with explicit instructions and a doctors follow up visit confirmed. Luckily it was not meninghitis. of either kind, and while there was still a viral infection and fever worring them, it wasn't enough to justify another nights stay. The following day at the doctors, it was found that he also had STREP, which is now being cared for...Dr. Mom is in full swing.

All those years dispensing vitamins and supplements to all my boys....watching what they eat, making sure thier diet is predominantly organic and balanced.....What I learn from raising Gabe I immediately apply to Will and Carlos. What I learn from loving these 3 boys, well, that gets applied just about everywhere else......Love, like knowledge, has a ripple effect to it.......

My only complaint is this......I spent 17 hours in the Emergency room and not once did a George Clooney Dr. Ross look a like, or a Dr. Mc Dreamy or a Dr. Mc Steamy show up.....not once!!!! Instead I was treated to poor sleep deprived talking fetuses that followed thier leader and tried to answer the questions thrown at them.....It is a teaching hospital.....I hope part of the lesson taught is that with caring for life, it's important how we treat one another......That the individual doesn't get lost in the diagnosis........With Mama Bear next to her cub, they watched what they said....

Those of us who love and care for people who the world insists upon treating like a diagnosis, this is exactly our concern. We want all our children to be valued for who they are. If we have to work a little harder to make connections, so be it.....It doesn't mean we love a child more or less, it means we know the value of each child, and each one is a labor of love.........

My baby is getting better.....his color is coming back, his head hurts less, and he wakes up smiling again........

Electrifying

This haiku is for my son Gabriel whose courage is worked into his most intricate circuitry.........
And for all moms of children with Autism..................


sparks dancing through mind
awakening wonder, life
wired uniquely...................

Snow fall

She watches the snow fall fiercely. The cold pane she rests her cheek on stings, but the sight of the moon against the deep prussian blue sky, and all that snow, waltzing it's way down, dipping and twirling, has her mesmerized......

There was a time when the only difference in her heart between castles of ice and sand, was the wardrobe worn. It wasn't until she realized that the concrete streets which shaped her accent were the very same that served as beds for the homeless, was there a preference assigned .

The house, quietly dormant, breathes in unison. The only sounds she hears are the rustling of the pine needles as they drop from the Christmas tree, now dry and ready to be let go........and the howls of the wind and it's boom as it hits what it cannot penetrate.......................

The remnants of a year passed and one just begun hangs on doors and rests on mantles. She writes the names of each of her children on the frost of the window and smiles. In challenging times it is the simple act of delineating each letter of each sons name that brings perspective back to her. In the most extreme of days, it is always the sweet markings of her boys, their whispered names, that lead her home...past the castles....ice, sand, sky.......

And so the snow fiercely falls.........

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..............