His Brothers Keeper..........

He stands by the door waiting for me. He has placed the leash on his dog, as I get my keys and look around to make sure I have turned everything I need to off. I glance at him, everything about him from his boyish voice cracking into the depth's of a man's intonation to what seems like the daily changes in his height, is in transition. The cherub like quality that once defined his beautiful face has been freshly scrubbed away revealing glimpses of a maturity that is slowly reshaping his features. There are shadows were facial hair is beginning to show. A softness in his expression remains. We no longer stand shoulder to shoulder. I look up to my son. It use to be he would fit perfectly under the arc of my arm, now it is I that find myself anchored by his.
So we walk.......

In sync our steps normally take on the rhythm of our conversation, which runs the gamut from music and politics to Autism and his brothers future. It weighs heavily on his mind. The focus in the media, in our homes, in our discussions is always on symptoms, on the disorder in general, on the controversial aspects vaccines, genetics, environmental triggers, lack of funds, the devastating financial burden, the lack of help available for children as they age out of the system, on and on it goes....but what is often overlooked is the very real impact this disorder has on a family, especially on siblings that sacrifice so much more than most realize. It's Autism all the time for the siblings as well. As much as you try to focus your attention on all your kids, and celebrate each one for their achievements, the truth is that with Autism it's not just packing a bag of non allergy treats or relying on a social story to prepare, it's living with the constant stress that anything that you cannot control can happen to create a complete meltdown, and the sibling will be overlooked in the whole ordeal. You can come equipped with the Autism version of Felix the Cat bag of tricks to help everything go smoothly, but possibility is a constant presence with the family, and siblings are constantly on guard.

But Will, Will is something special himself. Will has always been extroadinarily compassionate and sensitive to his brothers needs. Will has always had a soft spot for the children in Gabe's groups. He has always been drawn to research, and he spent his own time thinking about how he could help Gabe get better. Every year, the request was the same on his Santa list, cure for his brothers Autism. When he blew out his candles on his 6th birthday, he whispered "don't worry mom, Gabe will speak soon caused I wished it. If I wish it, it has to happen." When we changed Gabe's diet, Will would read labels and help me pick out what would be ok. He and Carlos also followed the diet with Gabe until we could get Gabe adjusted. When we did Floortime and RDI, Will was there, upfront, trying to pick up hints on how to play with his brother effectively. And when we spent every other day driving all over Long Island taking Gabe to his therapies, Will and Carlos were in the backseat, instead of on a playground. My guilt was huge, and as much as I tried to compensate and give them each thier own time, I could not change the reality that when there is a chronic disorder with such a monumental ripple effect in all aspect of life no one walks out unaffected. It profoundly defines the way you interact and see the world.

On one of our previous walks a few weeks back, Gabe accompanied us on his scooter and raced far ahead of us. Will confided that he had been thinking alot about what happens when I grow too frail to deal with Gabe, or what would happen when I am no longer here. He turned to me and said," don't ever worry about Gabe mom, I will always take care of him. I'm going to be a director, and Gabe will live with me. I will make sure he has a good life. I will make sure he is safe. I love him". "Hey Gabe" he called, "when mom gets old you want to come live with me in the city?" "Sure!" Gabe yells out, "I'll bring my wife too".......Now, Will laughs and says "oh crap!" and then gets serious and says, "mom, he wants to get married....do you think he ever could?"...but I couldn't answer, I couldn't get a word out....because I couldn't get past just how spectacular my Will is. And how unbelievably blessed I am to have a kid who gets that part of being human is the responsibility to make sure that we care for those that struggle to take care of themselves. Will is kind, intellectually gifted, he is talented, he is philosophical, he is compassionate, he is sensitive, he is by no means perfect, but he tries so hard to do the right thing by others. Gabe's milestones are due in part because of his brothers, and how each one of them relates to him. Carlos challenges him, Will guides him. There is no doubt in my mind that Gabe regained his speech because Will wished it, because Gabe willed it, because we all worked so hard for it, because everything about our family is a group effort...and because we were extremely lucky.....there is no doubt in my mind that my job was made easier in many ways because Will is who he is and has happily lent his support.

But today's walk I want our conversation to remain focused on him. I have been having a hard time these past few weeks thinking about Gabe and summer, and middle school and all the uneasy changes I see coming our way, and the obscurity of it all. I know he senses this and he wants to ease my mind, but I want for this block of time to be all about him. I watch as the sun highlights the gold in his long brown layered hair, how it swoops around the slightly curved strands of hair to frame his face as it gently brushes against it. I listen as he describes his latest ideas for his cartoon series, and then skips from that to what bands were overlooked in the Rolling Stones list...he takes this personally....His face lights up when he gets a chance to share his thoughts, the smile starts in his eyes and when it finally makes it to the corners of his mouth he is transformed. We both feel for poor Reeses who still struggles to navigate his way through a
cones view of the world.....It's an hour from our front door to the end of the road and back.....it's good to be home.....

So he makes his way to his room. It's dark, it smells like a gym locker, there are guitars, cd's and clothes scattered throughout, a stereo system and a computer is set up to the right and left of his chair. He is a teenager, these are the signs. He is slumped in that chair, feet on his bed, Pink Floyd serenades him while he searches the internet.....Next year he becomes a high school student, and before I care to accept it, he will be moving on.....But at least for a few more years, I'll still have him with me, anchored by his presence........

and his love.......

His brothers keepers......his mothers pride......

April Fool

Often the emphasis is on what the child cannot do. Often the emphasis is on evaluations, on questionnaires that take you from 1 to 5, always to never...Often the emphasis is on what would be the best early intervention program, best protocol, best diet, best therapies....Often the emphasis is on parents who would move mountains to make sure their child has a fighting chance...Often the talk is inspirational, motivational.......

But more often than not, I find myself strapped by love to a pendulum swaying between guilt, desperation, fear, anger, determination, education, advocacy and hope, I spend so much time in the guilt and hope the rest blurs into one stroke. I see him growing faster than I am able to process, chronologically 11, developmentally no where near...He wanting to connect with others, and they so much further ahead of him. He had a meltdown today, and after he left I had one of my own. It's April Fools day and for the first time ever, he wanted to pull a prank on his classmates. The prank he wanted to pull off in his mind took the shape of a circus, and everyone was to participate. What tipped me off to this was the big white plastic hefty bag he put all his stuffed animals, instruments and costumes in, and was pulling towards the door. "Gabe you can't take this to school" I say..."But this is my prank" he anxiously cries. I poke and pry and he tells me his plan and I try to tell him that is not a prank, I give him an example, I tell him we can come up with a good one together....but he melts. He wants to invite his whole class over for the circus in his room...round 2...I try to handle it delicately. I tell him you can invite a friend tomorrow to come and play with you. The meltdown went to the next level, on the floor, banging his head with his hands, incoherent. He was so confused about what a prank meant, he tries so hard with the jokes, he tries so hard to figure out what our expressions mean, and we forget the sensory issues, we forget the processing issues, we have no patience and expect him to have all the patience in the world with us. But he was so lost inbetween worlds. He was so lost inbetween meaning. He was so lost for words. So he cried, and tried to gather himself up, tried to pick up the pieces, while I swayed between frustration, anger, tremendous guilt, trying desperately to get to hope. His bus came when he was just about calm. He gingerly put his coat on, slung his arm through the loop of his backpack and hoisted it perfectly in the center of his back. With his head hanging low I watched him methodically place one foot in front of the other. Today the bounce was gone. Later in the day I know he would have a science test, the universal irony is that the test is about the environment, mutations, inheritance, structural adaptations, behavioral adaptations, pesticides, and how they affect us. He has no idea how long I have studied these very things, though not for a class....for him...I watch him take the 2 steps up and disappear into the back of his little yellow ochre school bus. The doors close, and my heart misses a beat.

More often than not it is a struggle for every mom who loves her ""Gabriel to balance the unfair weight of trying to give everyone equal time in the spotlight while running a household, running errands, tending to everyone's needs, building experiences and memories while creating a warm comfortable life. Throw in special needs and the guilt of feelings associated with not being able to fix it all, the frustrations, the mystery, the injustices, the not being able to be superwoman when you really need super powers....When doing the best you can sometimes, or most times isn't enough.....when all you want is for your kid to have a chance at living a good, happy, healthy life....suddenly you are instantly strapped onto that pendulum.....

It is not lost on me that Gabe was able to tell me what it was that he wanted to do. That took alot of hard work, alot of research, therapies, and lots of luck...I stand on alot of shoulders...I feel unbelievably grateful to have that. Seven years ago I was in tears holding onto his multicolored battery operated oinking pig begging him to please tell me who gave it to him, and I got nothing...no eye contact, no connection to my tears, no recognition of my presence, he turned around, gave me the back of his head and hurried off to line something up and then to climb onto something else. So I do know hope. But there are those days, when you are at a loss between 2 worlds, between all meaning, when you have trouble with expressions and making sense of it all....and what feels like a circus somehow has to be a colossal prank, and it's April Fools, but it's no joke, because it is life lived on a Spectrum strapped onto a pendulum by love......and the swings it takes, from one instance to the next.....is as unpredictable as life is.....

Often the emphasis has to be on everything....................................
and everyone....................
and pendulums.................
and swings............................

and love.

My Dear William

On a luminous day in the Spring of 1989, I graduated in Washington Square Park. There, cloaked in purple and black, I stood shoulder to shoulder with what seemed like thousands of strangers and just a few familiar faces. It seemed appropriate that I should stand in the middle of a park where I learned so many lessons, but it was wishful thinking on my part to think that with one swift movement of a tassle I could easily move on to the next chapter of my life. My heart was still in the depths of shock, and the absolute sadness of loss, change, transitions, and denial. A crash course in all stages of grief at once, disregarding each of it's seasons.

His name was William. He was 2 years older and 20 years wiser. I met him my second day of school. A born dancer, his body had a way of creating images in the most natural of ways, as though he were at peace with the space he inhabited. His eyes were tender. To this day, because of his eyes, I equate celestial blue to kindness. He was my assigned dance partner, but became my chosen best friend. I think what intrigued me about William was that as serene as he was with his body and the spaces he inhabited in the external world, he was so conflicted with what moved him on the inside. In the mid 80's coming out was not very accepted. William's parents were not very embracing of his art to begin with, they immediately felt uncomfortable with it, and were not supportive. When I conga'd into his life, he was coming to terms with his sexuality, something that would take him years to feel comfortable with. Here he was struggling with his truths, and I too, had my own issues that shadowed me. I have always been tremendously quirky, a resident of left field, a procrastinator, a late bloomer, and extremely insecure. In grammar school I was bullied, in high school I hid behind my art and a raging eating disorder. Now college was a chance to have fun, to be open to new experiences, but self doubt always got the best of me. Days dancing with William, now that was therapeutic. I think he was the first person I truely felt I could trust again with my thoughts. He got my sense of humor, he understood my crazy. It was an equal exchange, I was more than willing to love him for who he was, an intelligent, loving, talented, generous, beautiful, gentle man who wanted nothing more than to be loved, respected and accepted. We both wanted to fit in. But, this was the mid 80's, and it was the age of HIV/AIDS, it was the center of the paranoia storm, and ignorance did reign. He went on to join a dance troupe in France and leave me rather abruptly, mostly because in a last effort to appease his parents he thought perhaps we could be more than friends. I knew better for the both of us. I was honest because I adored him.
Late March of 89, I recieved a rose. Out of nowhere a man came up to me and said someone had asked him to deliver it. That evening I had a horrific dream involving William and at the suggestion of my mother, went to see my dance teacher to see if she had his contact info. Instead she had a book of poems he had left for me by e.e. cummings, and a letter asking to be read in the park. We walked to the park together. She knew he had Aids and did not want me to be alone when I read his letter. It was a suicide letter, It was his goodbye. It was his rose. The letter was his way of making peace with me. It was an unusually warm March day, the thin branches on the trees still rather bare lest the pinkish green buds just emerging from thier tips....the sky translucent blue...the noise, the hurried bodies racing, the cars in the distant, all fell away....he was gone, and I couldn't save him, I couldn't help him, I couldn't thank him, I couldn't tell him how much I loved him, I didn't get the chance to say goodbye. He didn't give me that chance. He loved me. He told me. He believed in me. I believed in him. but it was never going to be enough. It wasn't enough that my heart broke for him. 22 years later, it still breaks for him.


I could never understand why there is such an issue with anyones sexual orientation. I could never understand how a parent could turn thier back on thier child because of thier preference. I could never understand why any rights should be denied anyone. Because I love and honor the spirit and life of my dear friend, I teach my children that EVERYONE is equal and there is absolutely nothing wrong with being true to who you are. I have been criticized for doing just that but quite honestly, what's in your heart has nothing to do with who you love, it has everything to do with how you love.

William died in the Spring, his favorite season because he loved the idea of rebirth. My oldest son was born in the Spring. We named him William in tribute to my friend. Often I wonder "what if" he had been able to live out his life healthy and happy. How I would have loved for my husband and children to have been able to get to know him, and grow with him.. What turns would his life have taken? What beautiful things he could have contributed given the chance.....

The difference between where I stood in that park on graduation day that Spring, and where I am at now, all these years and lifetimes lived later is that will the shock has dissipated, and I have come to accept the overwhelming loss, I have not made amends with it. I do not think I ever will. His was an unfinished life, and I feel a responsibility to somehow help finalize it. I just haven't figured out how. This is where he would have stepped in and guided me....
This is where he, beautiful as he was, young as he was, lovely as he was, would have told me to knock it off and pay attention..........

His name was William

I love him


And I miss him..............................

The Rainbow Connection

I am 19 years old, running haphazardly in between the human traffic that commands Broadway, Austin and St Marks place, the streets of Greenwich Village, NYU's playground. In hindsight, I could have just lifted the tremendous pad I dragged along above my head and windsurfed to class, but I have always been a bit "entertained" and delayed, so anything other than the most primitive of plans never develops. I nervously enter my color class. It was one of the first real art classes that I have ever taken. I am extremely intimidated. I am self taught, so immediately I feel the entire class has one up on me. With one look around, it is evident I did not get the dress code memo, and what is even more apparent is the disdain for anything ordinary that my classmates have. Their eyes register everything exterior about me, from my mousy brown pony tailed hair, to my non tattooed skin, my worn jeans and plain tee shirt, their conclusion, I'm in the wrong class. No uniformed rebellion equals no artistic integrity. They didn't get just how afraid of needles and how indecisive I am, or that my grandmother would kill me. I know where I stand, now to find a place to sit and listen. The first lecture was about Childhood Heroes. Everyone was asked to off the top of their head name someone whose life inspired you or changed you, or who you connected with profoundly. In a room full of old souls, this newborn was struggling. These people had serious hard core tastes at a very young ages. I was floored when I heard someone say Camus was an early childhood hit. That kid must have been something at the sandbox. But the most amazing thing happened when he got to me. All I had to say was Jim Henson, and there was a release of genuine open smiles, and the darkness and heaviness of that room was lifted. Pure joyous multicolor in just one name. He was the common thread, what connected us all. The rainbow connection. Immediately everyone sat quoting a favorite muppet, the mohawked Junior Camus loved Mr. Snuffleupagus, another suggested we play a game to see which character was most like us, and for the rest of the semester those would be our names. I was redeemed. It no longer mattered that I was lazy at artisfying my look, I was an Ernie at heart, I was instantly understood, and that is what they embraced.


I am now a 43 year old mother of 3 boys, sitting in my kitchen, mousy haired pony tailed, very worn jeans, tee shirted, stretched marked, and a bit disheveled by the bumps along the way... this time the ordinary has become my extraordinary goal..Still, after all these years I'm missing Jim Henson. Sesame Street and the Muppets are sweeter an experience the second time around. My first go at it was unrestrained wonder, the second, a homecoming of sorts, with a deeper appreciation for the sheer genius of Henson's humanity. My middle son, a member of the spectrum, in his most regressed and disconnected state was able to relate to the community of muppets on Sesame Street. For some reason many of our ASD kids are their biggest, most loyal fans. I suppose it's because everything about them is safe, open, sensory friendly, warm, funny, engaging and innocent. I suppose it's because the spirit with which it was created was about awareness, celebrating uniqueness, about education, about fun, with love, kindness, and belief in the power of imagination. It doesn't matter how you are wired, when something evolves from a place of goodness and YES, the response is always OK......Come and play, everything is a-ok.......

It's not easy being green......I understand Kermits lament and eventual acceptance of who he is and how wonderful that is......

But Green is a walk in the park. Try being grey. Gabe's favorite color is purple, but he is perpetually sporting the grey. In color class we were taught that white is the reflection of all color, black the refraction of all color, therefore neither are a true color. The irony lies in that every sensory processing disorder that my son has can be described perfectly by either the hyper nature of complete reflection, or the hypo innateness of total absorption, each leaving Gabe struggling in the blur of grey....grey and white matter...grey is what slips through the cracks....grey is being forever 20, not a teen anymore, but not old enough to be considered legally independent....The color of Hope? I'm betting it has to be grey, because it's that grey area that is never quite clear, quite defined, where nothing is definitive enough to be one thing or another.....it's pure suspension....pure possibility.....if not let go.....I sit here in my kitchen with the view of a sky coated in a rich magnese blue. Our world is about to suddenly explode into color around us as April waits with it's green grass, tulips and cherry blossoms.....and meanwhile, I can't see past the grey....Gabe is going into the Middle School next September. There are going to be changes in the way they handle all the kids that are marked in grey....Anyone who has a learning disability, or classified as my child is, would no longer sit in an inclusion class setting. So now, again I face the insecurity of change, dealing with a school district whose first concerns are always financial before educational, summoning the optimistic spirit of Jim Henson while looking for rainbow connections.....trying to find my son's place on it, enveloping him in purple......

"Who said that every wish would be heard and answered, when wished on the morning star.
Somebody thought of that, and someone believed it. Look what it's done so far.
What's so amazing that keeps us stargazing, And what do we think we might see?
Someday we'll find it, the rainbow connection,
The lovers, the dreamers, and me"

Jim Henson/ Kermit

26 years

I have my high school reunion coming up. It will be 26 years since I have seen many of my classmates. 26 years. Twenty six years. That's legal. That's a masters under your belt. That for many is already newly wed status or young family, for others it's career, happy hour and creating a life... 26 years...That's hard time......The impact of the number came to dawn on me as I stood topless in a dressing room of a bra shop staring at my frazzled image and my directionally challenged breasts. How the hell did 26 years pass me by that quickly? I stare harder....I have been out of breath and out of sorts lately. I suppose much of it stems from my innate response to cure all that ails with rich decadent foods and cocktails like a Jewish Mother would lovingly ladle and dole out homemade chicken soup...but it's catching up to me, and not in a good way...My deep appreciation and loyalty to a sedentary life has not helped either....and it's hard to find the motivation to do something you really don't enjoy doing...Lately, putting on my pants is a workout session all it's own....Squatting, really? Unless I'm in a public restroom, it's not something I'm inspired to do....But, here I am in front of the mirror looking at evidence A, B, C and DD's, knowing full well something needs to change. I stand sideways for further inspection, and suck everything in...nothing happens....use to be, 26 years ago, 20 years ago, 9 years ago, I sucked in my gut and I would be lifted...my posture would change, my rib cage would reveal itself, my shoulders would go back and everything would fall into place....Now, nothing moves....not even a little twitch...oops....

So I tuck and fold and get set to pay the bill. I stand there calculating the monetary costs...joking I say "wow, that comes out to $40 a breast", and Celia and I giggle.....but the cost is far more substantial. I think of how I am feeling lately. How unbelievably tired I am. I think of many of my good friends who are rounder, older, wiser for the most part, but depleted and lost in the same way I am. I think of the changes we are in the midst of, the shifting of the earth, the shifting within our lives, the recession, the insecurities, the transitions that leave us now preparing to take care of our parents, while still raising our children...and the images I have stored away in my mind believing somehow that perfection had to look a certain way...peaceful, orderly, toned, secure....not as lived in as my home is, not as lived in as my body has become.....but then, it's lived in. And that is the key. While esthetically we know beauty is in the eye of the beholder, the reality is that ageism, and weight discrimination is embraced. I know health is the most important thing we have, and I do have to begin to take care of myself. I know in my case the extra weight affects my heart. But lets be honest, who's expectations are we trying to live up to here? And just how much weight does that carry in our collective psyche? So easy to say, why care about what anyone else thinks but you, when your thoughts are somewhat influenced by others....Feel valued? Feel beautiful? Feel whole?

Which brings me back to my relocated ladies and my search for undergarments that will treat my extra flesh with tenderness instead of encased ground meat...In the midst of the tragedy of Japan, everything falls short and seems so ridiculously silly....In the midst of lives being washed away in seconds, everything seems so small....However, how we feel about ourselves, and the way we live our daily lives is important. And here, 26 years later, in the middle of catastrophic natural disasters, and uncertain times, somewhere in my 43 year old being is an 18 year old girl looking forward to seeing her old friends, suspended in retrospect and reconnection...In hopefully something that fits.....The 80's are back .......everything old is new again......

.

Person First

There are a spectrum of colored markers fanned out in front of him. Anchored by a deep connection to a world of outlined animals that find animated life at the ends of his fingertips, he tells his stories. He is proud of them. Gabriel's Big Book Of Art prefaces a stream of stapled pieces of paper. He has filled the first 5 sheets, and has giggled, slapped the sides of his thighs, poked the bottom of his feet straight through each page. I study his work, trying to find clues, knowing his thoughts exist here, his feelings exist here, his stims come out here. It was through his drawings a few years back that he was able to express his profound feelings of inadequacies because of his differences. In a sheet of outlined floating faces, their in the left of center, was Gabe's round outlined face with a dunce cap perched on his head. It read LOSER vertically down that sharp cone. His was the only face not smiling. There in black and white were the most complex, concrete feelings in the simplest of fluid line. He was only 7 at the time. I sat huddled with his team, trying to find a way to help my son navigate not only his innate differences and disabilities within the external world , but also had to figure out how to begin to build up his self esteem so that he could feel what I do and know what I know, that he is in so many ways my hero. I wanted his inner world to have a strong foundation.

Building a sense of self worth takes a lifetime. I'm not going to pretend I solved this in sitcom speed with jokes, laughs, a few scripted soft moments, audience sighs and applause...no commercial breaks...No, it has been slow, and applied as needed, and I'm still in the beginning stages. Mothers who are raising a child with special challenges and needs are in a precarious place. They say when you loses a sense, the others strengthen as a result. Well, when you sense that your child can be seen as less than because of a diagnosis or a classification, you become hyper vigilant, extremely sensitive to the use of words, and non verbal form of communication takes on a new level of clarity. What is left unsaid becomes as palatable as the impact of the words that were served, savored and digested. But mostly, it becomes our mission to make sure that our children are seen as children first. They are given names. They are unique. They have typical attributes just like any other child. They should never be defined by thier disability, and thier disability does not suggest a lack of ability. They are whole. For years I told anyone that would pay attention that just because my child has a disorder doesn't mean he is one. But when words come into play, so many forget that our children process everything they say, even if they are wired a bit differently, or that the processing is delayed. They feel it, they sense it, they know it, because they are human. They have profound thoughts and emotions. Just because we are incapable of thinking outside of the box, or just don't understand it, it doesn't mean that they are not being affected by our callous use or misuse of words. For all the times that I tell Gabe he can do something, he is talented, he is brilliant, he is smart, he is funny, he is loving, there are so many more instances when outside of my radar, he is referred to as "autistic" "special needs" "disabled", "delayed" before he is addressed by his name, and hears and feels "can't" ,"different", "weird", not good enough....

There is a movement called Person First Language. It came about as a means to help a community of people who happen to have a disability been seen as a Person First. Simple concept, life altering results. It's not a denial of a diagnosis, it's putting the child, the person before it. It is acknowledging that the person is on equal footing despite their challenges. It is respecting an individual enough to see beyond the can't and embrace all the can's. It is about honoring integrity, restoring dignity, and helping to develop an awareness to the way we view and speak to one another. It's about awakening a sense of humanity that has long been ignored. If we demand that our school districts commit to this most simple of changes, and might I add, cost effective, it's free, and lead by example, perhaps it will ripple into the communities that support the schools. Perhaps if we hold those we elect to represent us to also joining this movement, perhaps they will begin to understand that what they vote for effects a person, not a disorder.

Gabe focused on completing his book for his teacher. Despite my pleas for him to fill in his lovely animals with color, their forms remain pristine white, only the delineated is granted a primary or secondary color. Years ago I would have sold my soul to the devil to have a chance to hear him speak to me, to have him be able to express a thought in the way I could understand it. To be able to not melt at the sounds of a band, or a high pitched anything. To be able to take him for a walk without having to race after him or hold my breath at what might set him off, or what might come out of him..to play appropriately, to not play parallel.... I would have given anything to see him with the other children actually interacting. While we have been able to get him to a place where he can answer our questions, and he can be part of a band, trumpet section thank you very much, Gabe, a loving, funny, silly, bright, talented, artistic boy who just happens to have Autism/.ADHD has a long way to go. And I, ever a Union member, (local Warrior mom) am calling on negociations with both celestial and not so celestial beings, threatening strikes, offering compromises, in the hopes that HOPE reigns, and somehow, Gabe and his peers, all find themselves thriving in a community of love and acceptance.....

It started innocently enough......

It started innocently enough. My youngest son was running late this morning, in an effort to beat the starting bell, I drove him in. When we pulled up, the children were exiting the cavalcade of yellow school buses, seeking out their respective cliques. My maternal instinct kicked in and I read the crowds of children like a mommy version of Evelyn Woods, skimming groups like pages, looking for my son. My heart skips. From a distance I see a familiar coat, a little larger than the frame that holds it up, His dark chocolate colored hair, scissored cut with longish layers, begin to convince me that this could be him. The dense backpack hung a bit more to the left than the other kids, same as Gabe, the sway from side to side, the height, just like Gabe....And then he sees his friends, the casual tilt of the head, the calmness in his hands, the way he merges with them and their stride immediately finds unison as they walk together towards the open school doors. My heart trips. Wishful thinking meets reality.

On February 20, 2011 Doonesbury, a comic strip created by Gary Trudeau, ran a story line where a playmate is disgusted by Jenny McCarthy because she popularized the "debunked"Autism Vaccine debate, called her a menace to the public. She's upset that it hurts the image of a playmate. Knowing Gary Trudeau has always sarcastically played with social issues, and because I am so close to this particular topic, I don't know how to read it. I can see it as both a pro and a con. But it comes to run at a particular time in my life when I find my dear friend looking for her options as to how to best protect her son. Years ago, she diligently followed a vaccination schedule only to have her normally developing child vanish right before her eyes after the last set of vaccinations. Where have I heard that story before? Oh, yea, it's mine and so many others. Her battles to retrieve this child were the typical you hear about. Her son now 15, has also been diagnosed recently with type 1 diabetes and has had seizures. Her school district is mandating that she give her son the DTP booster shot, they refuse the titers and religious exemption. She has deep fears and they are justifiable. Her oldest son has been fully vaccinated and up to date, her youngest when she gets there will be vaccinated, but this child, this child who regressed into a severe neurological disorder AFTER vaccination, whose health is fragile, and whose immune system is compromised, this child is different. The Doctors she has spoken to are weary of writing a medical exemption. She fears regression. She fears putting her child again in the line of danger. She fears what would happen next. The school district could not care less.

Her fears are mine as well. If you don't vaccinate your child you are seen as a bad parent, if you question the vaccine schedule or the preservatives in a vaccine, you are criminalized. Yet what kind of a parent would you be if you continued to sheepishly follow the rules knowing full well the impact it has had on your child? It's far more than just vaccines. It's genetically modified foods, it's far more pesticides in our foods than we can keep record of, it's the traces of antibiotics and psychotropic drugs found in our water, it's the silent contamination of high fructose corn syrup with thimersol that was kept quiet for 4 years, and was continued to be put into our name brand foods because these companies they didn't know either. It's the chemicals dumped into our streams, our oceans, our lakes..It's the fumes that are spat out into our atmosphere, and the chemicals that line the cans that hold our foods, or the plastic bottles that hold our drinks. It is not just a vaccine issue, it's an issue about how we nurture what is suppose to nourish us. It's about knowing and respecting the limits of each individual to tolerate the overwhelming amount of toxins we are exposed to daily. It's about not putting a compromised child in a compromising position. It's about allowing the parents a moment of peace. Parents who, from the moment of regression have been combing through every last instance, every possible thing from conception on that could have contributed to their child's diagnoses, while simultaneously researching, fighting, financing,educating, brainstorming, holding onto hope, redefining normalcy, going about creating possibilities as they are being villainized because they demand better. Because when you question, you get classified and labeled.....Just like they have been trying to do to Jenny McCarthy, just like they did to Dr. Andrew Wakefield. How not wanting to vaccinate a child who regressed after vaccination is completely anti-vaccination I'll never understand.

Whether Mr. Trudeau's comic was an observation on a hot button issue, or a jab being that his wife, Jane Pauly, had less than 6 degrees of seperation from GE, or that it was all flippant, the truth of the matter is that while a tremendously powerful industry is continued to be protected by our elected officials, our medical professionals, our institutions, our children will remain at risk. Medicine is necessary. Vaccines are necessary. Research is necessary. Scientists should not be compromised, but niether should we. We do need pharmaceutical companies, but as they say, absolute power corrupts absolutely. There needs to be a real focus on safety. And if we don't have the Jenny McCarthy's of the world, playmate or not, what chance do we have?

It all started innocently enough..............
My heart......

From the car

From a safe distance, I sit removed in my warm minivan, watching the slow moving feminine figures convene by the white school doors. Art Club will be let out in a few minutes, but I am not tempted by the promise of contrived small talk. As a matter of fact, small talk takes me down every time. After "hello", it's a matter of moments before I manage to say something inappropriate, giggle nervously, and become unraveled. I have not mastered the art of unraveling. Some do it slowly, like a seasoned Burlesque dancer, calibrated, teasing their audience through several afternoons..Not me. There is no theatrics, no build up, no artistry. It's quick, one minute your pants are up, the next they are at your ankles and you're falling over it, quick. The kind of quick that you don't even realize it happened until you make eye contact....So I sit there and admire how the moms have brushed their hairs, how they give off such relaxed auras. Zoloft? Prozac? Valium? They stand with their hands on their hips, some have their arms crossed, few in their pockets. Despite having been signaled out for "talking" with my hands, I have never noticed until now how reserved this community is with their hand gestures. Or any gesture that would give hint that something is off balance. Yet it's the off that seems to rule my life...

For the past week I have been helicoptering between my youngest who has had a strong asthma attack that still challenges us, and my middle child who apparently serves as host for out of control yeast party. Yeast brings about many behaviors, and waging wars against it requires a strict reworking of his diet, cutting back on sugars and all things that turn into sugar, a protocol of probiotics, GSE, biotin, etc...and a massive amount of patience and self control. Asthma, has had me looking at diet differently as well....easing up on the dairy, more broths, liquids, cleaning for real....the walls, the mattresses, the blinds, the sheets, the toys, under the furniture....and yet, despite my best efforts to channel my inner cleaning woman, which by the way sucks and needs to be fired, it has made little difference. Off, off, off........followed by a few choice hand gestures, a stomping of feet dance, and self medication.....maison du chocolat........

It would be nice to be able to handle the small talk.

missing my babies

Tender, the days of youth

open and close like soft wings

cupped mid palm and breath

Visual thoughts.....

I would have thought that at this point in life my 43 years would have served as a better guide. The balance between hindsight and foresight seems ridiculously off, foresight always falling short.
For a few months I could barely find the colors, let alone the words to express what was going through me. I don't know if it's a mid life issue, or a redefining life issue, or a reclaiming life issue...but the more I delve into paint, into glazing, into trying to understand my medium, and achieve translucency, the more transparent I became. Hours spent trying to find a place on the canvas, or the bottle where the subject would make sense, meticulously manipulating the image just so, left me contemplating the whole concept of belonging, of finding a space for yourself, or finding yourself.

I'm a visual thinker. I'm a visual learner. I'm also ironically enough, extraordinarily myopic. I am both near and farsighted. I am Mr. Magoo with Lady parts and hair.... Without help of my coke bottle glasses, or my contacts, I cannot see my hand in front of my face. My husband, who has amused himself throughout our 17 years of marriage playing a little game that he likes to call "Hide the Glasses" can attest that without my visual aides, I stumble. Both my vestibular and proprioceptive senses are compromised.

Before Gabe was diagnosed, I did what innately comes natural to most of us, I envisioned what life could be like for him, as well as Will and Carlos. This is not just reserved for our children, we do this all the time, vision boards, imagining ourselves in a certain position to establish a goal, we day dream, we fantasize. The power of visualization is profound. It has shaped our moral code, it has been such a fixture since the beginning of our time. It has established the black and white of it all, the good and evil, the SECRET, just about every abstract concept has a very visual concrete anchor.

After diagnosis I had to learn to take one day at a time and replace my dreams for my son with small attainable realistic goals, like sitting for 3 minutes, or relearning to gesture. The difficult challenge for someone like me, who needs to know what something will ultimately look like, how I can expect my son to function in future, what his life would look like, is the not having a clear picture, and not having the power to fix it. I hate the insecurity of it all, the uncertainty. I hate the mystery, or rather the denial, the lie, the cover up of it all. I hate the double standards. And while I know that no ones future is clear, or without strife, those who love and parent children like Gabe understand my fear.

Here is what I have been battling with....while the way I envision things pre and post classification have changed somewhat because of it, I'm starting to realize that in leaving the other senses out of my mental images, I am doing myself a disservice. I need to apply the Linda Mood Visualizing and Verbalizing techniques here . I'm the one that thinks I lose 40 pounds and all will be well. I win the lotto all will be well. I hit the big AUTISM CURE lotto and all will be well. There is a disconnect between end goal and journey. There is a disconnect with what looks right and what may or may not feel right. There is a disconnet with the process. There is a disconnect with touch, taste, feel, balance,sound and vision. There is a disconnect with illusion, delusion, disillusion, reality, fanatsy, mortality, immortality, purpose, belief, hope, continuity, promise, potential, limitation, fear, fearlessness, bravery, vulnerability, insecurity, knowledge, indicisiveness, clarity, confusion, devastation,restoration, power, empowering and powerless....
For years I've tried to fit in, tried to find a space that I could inhabit, somehow give back, and the twisted in me can't help but revel in the humor of it all, here in life trying to find a place to fit in, and then we look towards burial plots and epitaph to find our place amongst the dead. George Carlin had this terrific routine about "Stuff" and where we put in...I have become overwhelmed by the stuff in my head, in my heart, in my house, in my closets, under my bed, and in every crevice I can shove something in, bigger house, bigger body, bigger brain won't solve it. Maybe if I stop inhaling the turpentine & linseed oil.....

We tell our children to be who they are, when we all know that means as long as you conform. If you really have the courage to be who you are, you get crucified, and then, if lucky, your image gets culturally canonized while the essence of your truth gets lost in translation and molded to suit other peoples greedy ambitions. When you are courageous enough to embrace who you are, you get ridiculed for your weight, your sexuality, your looks, your beliefs, your values, your disabilities. So, when I tell my kids that it's ok to be who they are, that it's thier responsibility to themselves to be true to who they are.....when they go about finding themselves, as they begin to do so now, and looking for a place where they feel they belong, I feel the disconnect between the messages we send and the reality they face. The visual of a world that embraces diversity and free thinkers as opposed to a society that still challenges what equality really means...I feel the disconect between a Government where newly elected Republlican Congressmen and our new Speaker of House has already said they refuse to work with the man we elected President. I feel the disconnect between being having an opinion and being judgemental. And I feel a disconnect between our humanity and human nature. What we envision is powerful. Perhaps how we conceptualize our vision is where real changes can come about, but mostly its our willingness to allow it to manifest the way it was meant to be.

Reeses

Last Tuesday unraveled in the most unexpected of ways. By 8 am, instead of preparing for the bus, I was racing down main street in my minivan with 2 very worried kids and one extremely ill dog on my lap. By the time I pulled into the parking lot, Reeses was near death, and I was devastated. Our healthy pet quickly deteriorated right before our eyes in a matter of hours. How could this have happened?

In our home, our pets are an extension of our family. We are unapologetic animal lovers. From our everyday moments to our extraordinary heartbreaks or milestones, our pets are prominent and present loving beings that give back far more than what they are given. Tears streaming down our faces, his lifeless body cradled in my arms, perhaps clued the vet to just how important Reeses is to us, but it was no where near enough for him to not have coldly made clear to us that we would have to be responsible for the bill in full if he is to survive, or not survive the night. Every attempt to save Reeses would be documented and charged. If we could not pay in full, Reeses could not have a long shot at a recovery. There would be no hope. Where have I heard this before? Oh, right, for almost every therapy or DAN doctor I ever looked into for my own son Gabe. The price of help for your child in the Autism world is exorbitant, and if you cannot afford it, your child cannot have the services that could help him thrive. The business of helping is a business, it is always first and foremost a business. A profitable one at that. It's no wonder many are denied the coverage they pay into when they do have health insurance, and those without cannot afford the medical attention they need until it's too late...It's no different for a pet. Except, when you can't afford to save a pet you can put them down. Death by lack of funds.....The same is illegal for humans, but it is legal to deny a service needed, to the extent that it's needed, because they can't afford it. How do we continue to justify this?

I left Reeses at the vet that Tuesday and drove the kids to school. Reeses had seizures, convulsions, vomitted non stop. His numbers & vitals had the vets concerned and confused. They thought maybe he had liver cancer, maybe it was bacterial, maybe heartworms....a plethora of testing was done. Vet number 1 gave me no hope. Reeses could barely lift his head and could not stand. But he managed to give us kisses when he saw us and his spirits lifted. My husband, poor man, was left to console me. "Since when do you completely trust doctors?" he asked...."I have a gut feeling he will be fine...the cost? We'll figure it out, you do what you have to do." And here is where I am reminded of why I fell inlove and married this man. It was not his looks (though he is handsome) or his cheery disposition and bordering feminine sensitivity (completely dripping with sarcasm here, he makes David Letterman look like a kitten)....it was because his intelligence soothes me..it was because in my most vulnerable of moments he gives me hope. He trusts my decisions and instincts. He helps me stand up and dust myself off. In my hours of indescribable loss, he holds my hand and lends me the strength I need until I've found my own again. While most men would have taken the needle to Reeses themselves, he looked at his children, he looked at me, and he said "he'll be fine, and if not, you loved him and he loved you, you gave him a great life." The next few days Reeses got progressively better. Friday he was sent home with a slew of antibiotics, a special diet and a ton of vitamins and supplements. Turns out, Vet number 2 has a son on the spectrum and a deep faith in the impact of a healthy diet, vitamins and supplements. Vet number 2 also never took away my hope completely, and recognized the "miracle" of Reeses recovery as also having a strong support system visiting him twice daily, giving him the extra push to beat the bacteria that had invaded his body, inflammed his liver and kidneys 3 times it's natural size, and had left his immune system ravaged.

There is no irony left unnoticed here for me. I know life is fragile. The beginning of the summer left us with the reality of cancer and a recovery from a successful operation. The end of the summer was marked with the shock of Reeses sudden illness and a reminder once again that nothing should be taken for granted. Especially those closest to you. Hope is vital. Love is vital. Gratitude is vital. Life is vital. Respect is vital. Kindness is vital. Support is vital. Humor is vital. The choices we make have great impact on the lives of those we love, and sometimes on the lives of those we don't even know.

Reeses came into our lives as a shelter dog, happy to have found a home. He is a brilliant companion with a personality that towers over his little shih tzu frame. His outstanding overbite punctuated by one solitary tooth protruding out, coupled with his intense stare has lead the most resistant to succumb to his powers of silent persuasion and share a meal with him. Even at the vet's the assistants fell in love with him. It's easy. He is joy with a bit of an attitude and a swagger. He is always curled up by my feet, but we all know it's the other way around. If anything is a endorsement for shelter & rescue animals, it's this....unconditional love is absolutely free of charge with these little guys. The light they give is definitely healing. The impact thier lives have on yours, priceless...............

Picnic on the beach.........

An easy 25 feet separates 3 familiar silhouettes from my ever watchful eyes. I sit in the company of at least 20 well fed seagulls, all of which have much more of an interest in what I hold in my hands, than what is actually going through my head.

Normally, it would be my dogs staring intensely at me around the kitchen table. But today, I woke up yearning for a picnic, needing a beach, and aching for time to stand still long enough to breathe in each one of my baby boys....I inhale........pack 4 lunches, throw in some munchies. Granted, it is not your Ina Garten Barefoot Contessa spread, but then to my defense, Ina doesn't have to deal with food allergies, arguments over who called shotgun first, what type of music to play, who farted, the punch buggy game, and then the punch buggy game gone seriously wrong...(Gabe always ends up thinking every car is fair game and wails on Will)...So in my world, walking outside to get some herbs from my garden is more like staking out the joint for a mental escape. I picture myself scaling fences, then remembering in my youth, how when I was far thinner and more limber, it took 3 Greeks to hoist me back onto a boat, scaling a fence with what most certainly would inspire Sir Mix a Lot to rewrite a classic, would be, pardon the pun, assinine. Fat asses should not happen to good people. But I digress, and I exhale......................................

Nothing beats the beach after the crowds have left. On a windy day like today, where the damp salted chill competes with the warming pockets of sun that slips through the clouds, you can find a few scattered people laying about like seals just taking in the moment.......My boys explore the shorelines. Will and Carlos walk ahead. Gabe sits, legs crossed, his back to me, looking at the ocean. His dark outline made more pronounced by the glittering light that appears to dance around him, is pure perfection. From this distance, I can only hear the gush of uninterrupted wind, the crashing of the waves and the slight frothing of the foam left behind... thier conversations are left inaudible, replaced by the gulls that grow impatient with me. My heart clenched, reflextively I inhale. The summer I was pregnant with Gabe, JFK Jr's plane went down. I was attending NYU when he was at the Law school, so he was very real to me. Called me Presley because of the tribute to Elvis I had painted on the back of my denim jacket. We graduated the same year. I first paid attention to the phrase search and recovery when that plane went down. In my mind, search meant hope, recovery meant a healing, a saving....they meant a retrieval of the bodies, I was hoping for a revival, a resurrection of sorts. You hear "recovery" used for our ASD kids, every parents hope, every search, every research, would end in recovery...My mom spent the summer recovering from colon cancer surgery at my home this summer. A search for a reason for her overwhelming exhaustion lead to recovery from a cancer that grew within. For the innate procrastinator, summers long leisurely days were seemed to have been designed with us in mind. Yet, this year more than any, it has betrayed me. I have not been able to catch up to the demands of dealing with so many unique needs in so many different
bodies. The wave swells high, curves inward with a rush, racing onto the shore, boyhood returned to the sea, adolescence awkwardly taking it's place. I search for ways to slow life down a bit, keep my boys where they are at until I am ready to let them go, knowing full well I might never be ready. Recovery? Rehab? A surprise picnic on the beach. A chance to spend time with my favorite kids, at my favorite place, in the dwindling days of my most favorite season.. Perfect way to spend a day off of school. My heart replete, surrendering, I exhale.......

An easy 3 inches in height seperates Will's shoulders from mine. I look up to him now. We fold the blanket, pick up what was left by the seagulls, collect the seashells and rocks, and begin our walk to the car. Though we are no where near through with the work expected from the day, the break was embraced. The beach, literally, figuratively, has always been where I go to restore. It's a moment of peace.

Shotgun called...arms punched.....radio station negociated.....ramdon conversations collide....several warnings issued.....sea air drifts in.....the first strands of Stones Beast of Burden starts, the volume gets turned up.....and the car saunters home..................

Definitely not ready for summer to end...........
Definitely not ready for my kids to grow up...............
Definitely just not ready.................
still searching....................
perhaps rescue...........
and then recovery...............

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.....