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......

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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......