Maribel Danta

Say Cheese......

2011-10-25T14:25:00.003-04:00

Channeling Sophia Petrillo, I begin.....

Picture it: Center Moriches, November 2002, in King Kullen's dairy aisle....grocery cart parked right by the eggs...a 3 year old Gabe, fully clothed (including jacket), is strapped into the cart seat. In the red plastic car attachment Will,5 and Carlos 2, sit patiently. I, lulled by the unexpected cooperation of my boys, am confident I have enough time to grab a few dozen eggs. Tempting fate, I walk towards the eggs. In the time it took to pick out an extra 2 dozen eggs, Gabe, still strapped in, was completely naked, Carlos had gotten out of the car and proceeded to pee in a cleaning bucket, and Will was wrestling the first dozen eggs I had put in the cart away from Gab'es grasp. For some reason that year, Gabe who lost every milestone and was just diagnosed with ASD/ADHD, decided he must sit on every egg he could...apparently he had hen tendencies as well, I'm sure that would be a whole other diagnosis.
There I stood, eggs on the floor, on Will, on Gabe, on my face, confused...flee...fight....cocktail....overwhelmed and ready to cry....but I made the conscious choice to laugh instead, and kept moving.....FAST.......

Picture it: Shirley Long Island, July 2004, Petland...After lots of research, reaching out, therapies and biomedical interventions, Gabe was slowly coming around. He was regaining language, and a gluten free/ casein fee/ egg free diet implemented after testing revealed severe food allergies, helped dramatically to subdue his hyper impulsive behaviors, his ability to focus, and his cognitive skills. We began to hope again. Will now 7, Carlos 4 and Gabe 5 ran into Petland to see the animals while I got some food for the dogs. Will kicks up his foot and his shoe flies off lodging itself between the top shelf and the wall. As the attendant and I dealt with our height challenges and our positioning, Gabe grabbed a dog biscuit and began to eat it as a ferret grabs hold of Carlos' finger. The rest is history...I lost my mind....absolutely frantic..."is this a gluten free/ casein free/ egg free biscuit? Can I see the ingredient list? Gluten, wheat, you know gluten??? AARRGGHH WHY!!! WHY!!!! As Gabe gets all dramatic shades of red and I could feel the heat rising to the curvature of the cartilage rounding his ears, I'm panicked. Will tries to pry the ferret off of Carlos' finger and the attendant, frazzled is left completely overwhelmed by yet another bit of my reality that is leaked into the unsuspecting world...He says to Carlos "why didn't you read the sign?" and Carlos cries "because I'm 4 and I can't read yet"....and it hit me hard....I looked around at the scene and started to laugh hard and loud, and it was contagious...again, the choice to laugh ruled, we bandaged Carlos up, left the shoe and ran off to the vitamin store to pick up some activated charcoal for Gabe's monumental infraction. I walked away releasing every last bit of shame and embarrassment I was holding onto, then I popped open the cork and toasted.

Picture it: Center Moriches, October 2011, last Friday to be exact....Gabe is slipping academically and behaviorally as well...All indications point to yeast. The incessant giggling, the perserverating
over looney tune songs, the newly found need to suck on his arm, the biting of his shirt. A long note from his aide confirmed my suspicions that it was hitting him harder than usual...can the onset of puberty be to blame?...Our world never completely flipped right side up again, but as it goes in my life (and because at times I am a slow learner..optimism gets in the way of lessons) his early academic successes this year lulled me into a false sense of confidence that all will be well. I tempted fate and it threw dog biscuits and eggs at me. The road is long, the road to yeast recovery is perpetually longer...and it truly is an isolating and dismissive experience. Just when I was about to surrender to tears, I get his school picture, and it's no longer a choice... laughter explodes....

I do not know what the future holds. I barely know what to make of the present. My definition of "all right", as though directed by Michael Bay, constantly transforms into something new and multifaceted as we go from obstacle to obstacle. Life is resoundingly and pervasively temporary.

Still, despite serious concerns, deep disappointments, and the inevitable questioning of faith, I catch myself making chapels out of stars.....looking for connections from a neural and cellular level to a societal one. Praying that in between the concrete and the abstract love and laughter will continue to accompany us....all the while trying to duct the eggs...and the biscuits....and whatever else is thrown our way......

You need perspective to find the humor in circumstance, you need grace to handle it with kindness and an open mind....But you need good wine, good food, good friends and family to be able to make it through sanely, and keep your spirits and faith up, when you can't see straight anymore.
Thank you my people for uncrossing my eyes.....now to uncross Gabe's........................

Painting Will

2011-08-19T12:43:00.003-04:00

Right before my birthday in May, I developed a metaphorical existential lump in my throat of epic proportion. One would think that perhaps in turning 44 my age was getting to me...but it wasn't my age that left me struggling, it was everyone else's.

I could have and should have been blogging about all the transitions that we were facing this past June. Monumental milestones were met. My oldest graduated Middle School and will start High School in 2 weeks. My two young ones stepped up and into Middle School, leaving elementary days behind them. Our years of dealing with the very pervasively rippled impact of Gabe's Autism and ADHD on every aspect of life, has, in turn left me with a unique perspective. I muse over the reflection it has cast on stigmas, on how we define what is acceptable or not, the questioning, the redefining of independance, normalcy, worth, levels of functioning, what it truly means to be tolerant, how we communicate, and those opening and closing of circles...what it means to be forgiving, to be accountable, to be honest...especially to be honest. What it means to be respectful..the importance of kindness and being mindful. From a reflective perspective it becomes pressing just how essential nature is, and how any form of nature should never be dismissed or excused, only nutured. The infamous "being different does not equate to being lesser than" gently rolls and sometimes loudly crashes onto the shallow narrow shorelines we wade in. Real diversity is inclusive, even the out of the box thinkers, no matter how far out we may be, finds their place on the colors of life's mirrored spectrum.... On two consecutive nights I watched my three children, one with great swag, one with intense excitement, and one with deep introspect, walk across the same stage during 2 different ceremonies, celebrating transitions. My babies are a far cry from those Blues Clues and Sesame Street filled days, I just never imagined it would sting this profoundly.

A summer spent trying desperately to get my emotions and my thoughts in check was nothing less than futile. The sounds of a house in a full blown metamorphosis state can be a little overwhelming as well. The silences feel different, and the noises, the deeping voices, the topics of conversations, the thought processes that sneak up on you and surprise you as they reveal very distinct and opinionated, funny, bright, ridiculous, insightful young men.....but I am not ready to have them change this rapidly, I seem to digest things so much slower, and I want so badly to hold onto everyone just as they are, just a little longer...and I look to my parents who are aging as quickly as my boys....and who may not be as independent as they are now for much longer....and yet again, the concept of independence transitions on it's own....I am left to wonder, how someone like me, who is still riding on the delusional wave of 21, and finds herself consistantly run over by life cycles, can ever make peace with the passage of time and all it takes with it as it frivolously goes on.........

So in the hopes of holding onto a moment, I fall back on instincts, my most primal ones. I pull out my paintbrushes, I choose my palette, I prime my canvas, get my mediums ready, and I attempt to capture my world in transition, one subject at a time, one heart beat at a time.....

I begin by painting Will...........

The Rapture Cha Cha Cha

2011-05-20T12:08:00.003-04:00

On a temperamental mid May Wednesday afternoon, a new version of the Cha Cha Cha was created at the Arthur Murray School of Dance in Center Moriches, NY. The week was wet, the clouds hung darker and grayer than usual. An occasional exhale of sunlight provided a moment of relief, before sudden downpours of torrential rains jumped off all things of substance as though they were trampolines. We watched from under a disco ball while waiting for our Cha Cha Cha lesson. The weather stood in the way of most of our classmates, but Gabe and I are dancing machines, and we weren't going to miss it.......The music starts.....The teacher (aka Arthur Murray, according to Gabe) takes his place. There are 6 of us there, he stands in the middle and counts the beats...right foot front....cha cha cha.....left foot back cha cha cha.....

Gabe and I stand face to face trying to figure out our left from our right...I count along, guiding him.....And it starts.....the birth of the new version of the Cha Cha Cha, The Rapture CHA CHA CHA....ready?

Assume position, back straight, shoulders back, arms extended...

One two, Cha Cha Cha

Gabe: Will the world end on Saturday? Cha cha cha

Me: No Gabe Cha Cha Cha

Gabe: But they say it will blow up Cha Cha Cha...

Me: nothing will happen Cha Cha Cha

Gabe: I don't want to die Cha Cha Cha

Me: You are not going to die Cha Cha Cha

Gabe: I don't want anyone to die Cha Cha Cha

Me: No one is going to die Cha Cha Cha

Gabe: I don't want the world to end Cha Cha Cha

Me: you're killing my feet Cha Cha Cha...

Gabe: What if we blow up Cha Cha Cha

Me: We are not going to blow up Cha Cha Cha...Now travel Cha Cha CHa
Knock it off and focus Cha Cha Cha

Gabe: What can I earn Cha Cha Cha

Me: You can earn computer Cha Cha Cha.....

Gabe: Can I earn computer and not blowing up? Cha Cha Cha....

Me: Yes, you can earn both things Cha Cha Cha

Gabe: I'm hungry Cha Cha Cha

Me: Pay attention and travel Cha Cha Cha

Gabe: Can I earn computer, not blowing up and cocktail weinies if I do a good job with Mr. Arthur Murray Cha Cha Cha?

Me: Yes Gabe, now please focus on dance Cha Cha Cha.....
Now turn Cha Cha Cha

Gabe: I don't want to die Cha Cha Cha
I want to live Cha Cha Cha
Turn the Disco Ball on Cha Cha Cha
This is a party Cha Cha Cha...........

He remained unfocused and anxious the rest of the class.....

We drove home......

Where another version of the Cha Cha Cha was born......

It's called the Pinot Grigio Cha Cha Cha .......and it goes something like this.....

Assume position, Back straight, shoulders back, arm extended, pour into glass.....and RAISE your glass Cha Cha Cha.....

Here's the deal.....If I have to watch my "language" in front of children and limit my "french" to decibals only audible to dogs, then others should watch what they say about "world destruction" and "death" around my kids, Gabe in particular, because he does not perserverate over my 4 letter word choices, but he does over his mortality, and everyone elses. And it's endless. Just when you think he has calmed down, he's back up asking you the same questions all over again, cha cha *f*ing cha...A slip of the f word, ok, a well thought out creative use of the f word, is nothing next to the anxiety created by what the "D" word inspires the imagination to unleash.......I think "World Destruction" is a hell of a lot more offensive than any of Carlins famous 7 words you can't say on TV.....But that's just my *F*ing opinion......

Hopefully next week we will be dancing the "I Survived Salsa"...........

End the "R" Word

2011-05-09T10:41:00.002-04:00

Mother's Day started out on a promise to be laid back and beautiful. A pre-Mothers Day celebration with my parents at a restaurant we love, followed by a warm bright lazy morning was enough to stretch into the day wide and slow, and feel the relief....but relief, in my world, is nothing but a tease.

It was supposed to be easy. A ride into a neighboring town for fresh bread, sea food, and Gabe's special bread, and then Gabe and I would finish off at our local grocery store for coldcuts and fresh fruit. Simple, right? It's never so simple.......

One of the employees behind the deli counter used to be Gabe's school bus driver when he started out in Just Kids, a Special Ed pre school. She would drive the bus during the summer program. Though it was years ago, he was only 4, she remembered us clearly. Gabe would get on the bus fully clothed and come off it completely naked. The matron spent the time collecting shoes and clothes and trying to get it back on. Gabe was non verbal at the time, and very hyper active. I was still trying to wrap my head around how to help my kid, and Will would wait for Gabe on the porch and run out to greet him the moment he spotted the bus. She remembered a flirty Carlos, seated on my hip, his wavy blondish tossled head of hair nestled in my neck , playing Peek a Boo through the strands of my hair...she remembered it all. I had filled her in on his progress, so when she saw Gabe, tall, fully clothed, handsome, loving, friendly and able to answer her questions, she was overwhelmed. She shared with a co-worker just how far he had come, and while we were all talking, the woman behind me snickered to her friend "if I had a kid like that I would have shot myself in the head. I could not deal with a retard."

Instantly I felt everything rise in me. I think the anger might just have lifted me off the floor. Luckily, the lady before me that was still being helped, realized lovingly, as real mothers do, that she needed to engage my son, who was holding onto a red ball, in conversation and steered him towards her husband who was an eyeshot and earshot away with thier daughter so that he could play show and tell. She instinctively took care of my child so that I could handle the situation accordingly. Her order awaited her on the counter, and my wrath was waiting to be unleashed on the "woman" behind me. I will preface this by saying that it is my nature to be flexible, easy going, to the point of dancing on indecisive. I am a big believer in underdogs, being one myself, and I hate the idea of hurting anyones feelings.......BUT.....when something so horrific is said, especially in the presence of my child, who could have easily heard her, about my child who was doing nothing out of the ordinary (even if he was it wouldn't have mattered), who was engaged and connected with people who were genuinely happy to see him, and enjoyed him, every primal motherly fiber of my being was going to attack harshly, mercilessly, and as profanely creatively as possible. I was shaking too fiercely to retain any type of composure. While I was able to verbally take her down, with reprimands also being offered from the employees who have watched Gabe grow up, and a few other moms on line who were also offended because they know and love someone on the spectrum, her hate shattered me. She is not unique. I have heard parents refer to thier childrens actions as "retarded", I have heard other kids toss that word around like it was a ball. Gabe has in the past come to me to ask if he was stupid. While I believe the kids that have grown up with him for the most part have been wonderful, he is asking for a reason, and I question what must have been said, or implied.

What people do not seem to understand is that certain words are really not ok to use. I am tired of the "PC" backlash. Not everyone can protect themselves and fight back without the sting of the stigma, because there is a classification involved. And quite frankly I cannot get over the arrogance, the sense of entitlement and the overwhelming ignorance of our society in general to think that people who have intellectual or developmental disabilities do not understand what is being said, and the intent in which things are said, so it's ok to continue to berate them. it's always the intention behind the word. You're a "retard" is meant to degrade and isolate. It is offensive. period. And those that think that people like me are ridiculous for taking offense to it, have never ever wholeheartedly loved someone with a neurological, developmental, or an intellectual disability. Period. Those people have never taken the time to really be involved in the day to day therapies and work required and the courage it takes, the spirit it takes for our loved ones to not only navigate in a world not wired for them, but deal with the preconcieved and prejudicial assumptions that hinder them more than any disability ever could. We all carry words that have validated our insecurities, we all know what it's like to have negative thoughts stop us from being who we are. I cannot understand the need to defend the use of this word. And if it's to be used again ( as I know it most probably will) to dismiss my son or any child like him, fair warning, I will not hold back. As shattered as that experience left me on Mothers Day, my resolve is that much greater. Please join the movement. Our kids are aware. Our kids deserve better. They deserve RESPECT, HUMANITY,ACCEPTANCE, PASSION and UNITY.

End the "R" word.......replace it with HOPE......

Simple

Beyond a Lens

2011-05-03T10:58:00.002-04:00

The weekend started on a global voyeuristic note with the world swooning over a restorative royal wedding, and concluded with our President, always a perfect mix of dignified swag and elegance, earnestly confirming the death of this century's most diabolical clandestine terrorist by the hands of our Navy Seals at his command.

Nestled amidst the 2 polar events, my family, friends and I were gathered together on an endless grassy school yard under a warm bright sky to celebrate Special Olympics.

We were no longer virgins to this spectacular event. Last year, we were lost in awe, lost in the love the crowd gave the athletes, lost in the courage the athletes wore like medals, lost in the monumental feel of hope. Still on that high, we gathered our poster boards, loaded our cars, and caravaned our way down Long Island's highways and it's confusing streets. Needless to say, as the directionally challenged leader of this homage to gypsy travel, we were lost before we even started...but I digress...We found our way, and fortunately for us, as it turns out, Special Olympic time runs on Latino time......we are all fashionably late......

Anyone who knows my son, knows that he is one of the countless of kids on the spectrum with auditory processing issues and sensitivities. He has been anxious about having a Marching Band at the ceremony since last year. Though he had been told that perhaps there would be no Marching Band this year, my husband and I had been preparing him for the possibility, giving him options. Last year, Carlos walked with Gabe and they stood at a distance where Gabe wouldn't be affected by the noise. This year, the sight of tall feathered structured hats and glimmers of bronzed metal peeking over the backs of uniformed shoulders sent Gabe into cardiac arrest. Not to mention that there were 2 bands of bagpipe players and he had no clue the level of torment that could take him too...The panic in his eyes were rivaled only by the panic in his coach's eyes as he was trying desperately to reach me on my temperamental phone. Luckily, the promise of a long walk, an iphone to play with, earning of computers and cocktail wienies thrown in for good measure, helped Gabe compose himself. Master at negociations, my kid could broker union deals if it came down to food and fun.....yep, definitely my genes at work there....maybe if my genetic makeup was focus and success things would be different...but, again, I digress.....

During the walk my husband had the brilliant idea to give Gabe his camera. Gabe has taken an interest in photography lately. Every so often when I go to download pictures from my camera, I find interesting and intricate stuffed animal compositions in between the images of my sons. He has an very unique perspective, and is fearless with angles. We had gotten him a camera in the past (a simple Kodak) and in record time he broke it, so we decided perhaps he wasn't ready for it just yet. But, here, athletes rule, and there was time to kill, why not document it....so off Gabe went on his little adventures in between competetions and ribbon distributions, shadowed by siblings and which ever adult was "it" at the moment, and he took in the event.

The parade and the pagentary of local Special Olympic events are endearing. The hosting school makes a few announcements, local politicians, preferably one with a child with special needs, is moved to speak, art competitions are awarded and the school chorus sings...Banners are held high, paraders wave keeping thier arms in perfect V formations, local chapter of Knights of Columbus, Marching Bands, and Police representations appear with rehearsed precision....On the sports field, during competetions is really where true sportsmanship is highlighted. These kids and adults are cheered on along the way and they in turn cheer for thier own competetion. High fives, hugs, pats on the back, and a comeraderie that is rarely seen in the "typical" world, is innately embodied here. Everyone understands the work it takes to get to a place where despite the challenges of neurological wiring, chromosonal makeup, sensory issues, the environment, societies preconceptions, physical limitations, social skills issues, spirit is limitless, and it's in that spirit that we are all lifted. Here, during Special Olympics, we see it manifested communally, and it is celebrated openly, unabashedly, unapologetically...and it is reaffirming. What is equally important is the support we families recieve from our friends, our loved ones. I am profoundly grateful for the group of women I proudly call my sisters and my friends. They love my children, love my husband, and love me enough to embrace us, comprehend us, and come out to cheer with and for us in so many ways and on so many occasions. These are the women that when I confide my worries and fears, and I need to vent, do not dismiss my feelings when I am most vulnerable because they can't relate, they listen, they help me redirect myself, they make me laugh, and sometimes, even when words aren't spoken, the intent is felt, and it's always appreciated.

When we were all celebrated out, we returned home and Gabe handed his father the camera. The pictures were downloaded. We were left speechless. Gabe apparently had gone around asking people if he could take thier pictures. What he produced was a beautiful gallery of portraits, with some of the most expressive faces. Years ago I read an article about how children on the spectrum had trouble reading expressions and mimicking because of deficits with mirror neurons. Yet, my son, who we had to work hard on to achieve some type of eye contact (RDI helped the most with this) and who constantly asks you what you are feeling, loves portraits. It's apparent he has a gift for it. It's a love I share, I have always loved portraits and figurative work most of all. I suppose the less you feel you understand about people, the more intrigued you are by them. So, my son now owns his fathers camera, has taken it to school and has captured his classmates in the most natural and contemplative way. And I think perhaps for Gabe, a camera goes beyond a lens and it's his way to express himself, his way of communicating to us how he sees his world, how he approaches his subjects. Perhaps the clues to helping him stay more focused and connected lies in the angles he choses and the essence he captures......

Photo courtesy of Gabe's collection. His self portrait taken on May 1, 2011, in his 11th year......

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

2011-04-19T10:20:00.002-04:00

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

2011-04-01T13:01:00.004-04:00

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

2011-03-26T21:38:00.003-04:00

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

2011-03-25T09:10:00.003-04:00

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

2011-03-14T12:45:00.003-04:00

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

2011-03-09T12:30:00.002-05:00

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......

2011-03-07T10:34:00.003-05:00

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

2011-01-25T16:51:00.004-05:00

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

2011-01-05T10:42:00.001-05:00

Tender, the days of youth

open and close like soft wings

cupped mid palm and breath

Visual thoughts.....

2011-01-03T11:23:00.004-05:00

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

2010-09-19T18:09:00.003-04:00

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.........

2010-09-10T20:30:00.005-04:00

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.....

2010-08-19T22:01:00.003-04:00

"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.....

2010-07-29T10:22:00.003-04:00

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........

2010-06-14T08:57:00.003-04:00

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

2010-05-08T12:48:00.003-04:00

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

2010-05-06T12:47:00.004-04:00

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

2010-04-21T14:10:00.003-04:00

"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

2010-03-17T21:05:00.002-04:00

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

2010-03-14T21:08:00.003-04:00

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

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

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

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

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

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

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

2010-03-05T21:33:00.003-05:00

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

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

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

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

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

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

Paper Hearts

2010-02-13T10:10:00.003-05:00

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

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

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

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

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

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

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

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

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

Breath

2010-02-10T10:23:00.002-05:00

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

First Haiku that immediately came to mind:

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

The second:

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

St Vincents Hospital

2010-02-08T11:12:00.004-05:00

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

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

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

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

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

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

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

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

Uncanny

2010-02-05T15:11:00.003-05:00

Haiku this week is Uncanny

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

Promises, promises

2010-02-04T15:24:00.003-05:00

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

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

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

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

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

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

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

AARRGGHHHH

2010-01-31T10:22:00.003-05:00

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

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

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

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

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

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

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

Peace

2010-01-25T09:38:00.003-05:00

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

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

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

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

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

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

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

2010-01-22T10:27:00.002-05:00

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

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

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

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

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

Incandescent

2010-01-20T17:30:00.003-05:00

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

Here goes......

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

One Beautiful Dreamer.......

2010-01-18T13:13:00.003-05:00

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Trembles

2010-01-15T09:29:00.002-05:00

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

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

2010-01-12T21:21:00.003-05:00

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

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

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

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

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

A night at the ER......

2010-01-09T15:12:00.003-05:00

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

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

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

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

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

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

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

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

Electrifying

2010-01-05T15:01:00.002-05:00

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

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

Snow fall

2010-01-03T22:28:00.003-05:00

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

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

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

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

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

Resolutions

2009-12-31T13:39:00.003-05:00

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

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

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

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

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

Happy New Year

Regrets.....

2009-12-30T15:41:00.002-05:00

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

My Igloo........

2009-12-21T14:53:00.003-05:00

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

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

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

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

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

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

2009-12-14T19:46:00.004-05:00

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Oh Christmas Tree Oh Christmas Tree

2009-12-13T14:57:00.003-05:00

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

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

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

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

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

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

2009-12-09T08:56:00.003-05:00

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

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

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

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

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

Any person found with HIV may be executed

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

This information was gathered off of CNN's website.

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

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

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

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

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

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

Why NY Why??????

2009-12-02T17:41:00.000-05:00

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

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

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

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

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

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

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

Moving towards independence....

2009-11-24T08:19:00.000-05:00

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

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

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

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

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

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

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

Pepe

2009-11-23T17:00:00.000-05:00

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

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

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

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

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

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

Growing pains.....

2009-11-22T20:37:00.000-05:00

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

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

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

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

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

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

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

2009-11-16T17:11:00.000-05:00

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

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

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

Long time no blog

2009-11-15T20:42:00.000-05:00

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

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

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

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

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

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

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

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

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

I Stim, You stim....

2009-10-26T08:59:00.000-04:00

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

For those who may not be familiar with this little gem, stimming, to quote this generation's Encyclopedia Brittanica, Wikipedia, " is a repetitive body movement that is hypothesized to self-stimulate one or more senses in a regulated manner. The term is shorthand for self-stimulation, and a repetitive movement, or stereotypy, is referred to as stimming under the hypothesis that it has a function related to sensory input.^{Simply put, flapping, rocking, vocal noises, visually stimming through the corners of your eyes, are all classic examples of what many people who have sensory processing issues,(which would include those with Autism and other developmental delays and neurological issues) do to help calm or self regulate.
My son is a slap happy kid who likes to harmonize as he quickly smacks the side of his leg. If he were on stage with a bango, during a ho-down or emceeing a Square dance, or doing the Hambone dance, it would be completely appropriate. Hell, it would be amazing. But this is not when he chooses to go all out. He does this when he gets excited or anxious. In the playground, or in class, or during an assembly, in the supermarket, at the movies, in a resteraunt. You want all eyes on you in a minute, this is all you have to do...put your hand on your thigh and let it rip, real fast, humm a few bars of something catchy and you have the floor.

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

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

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

Autumn

2009-10-20T22:22:00.000-04:00

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

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

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

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

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

Winds of change?

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

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

Ah to the choo....

2009-10-14T10:06:00.000-04:00

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

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

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

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

Hope, noble, is necessary for Peace

2009-10-09T11:19:00.000-04:00

I suppose the surprise announcement that President Barack Obama won the Nobel Peace Prize will have some cheering, others questioning, and a few protesting. I imagine the speculation of whether he has done enough to merit such an honor, if the few months of his presidency could compete with the accomplishments of the other candidates, would lead to side by side comparisons and subjective opinions of what then does this award mean, and who really deserves it. So I decided before anything I would look into the Nobel Peace Prize to find out what it's about. Here, simply put, I read and I quote "according to Nobel's will, the Peace Prize should be awarded "to the person who shall have done the most or the best work for fraternity between nations, for the abolition or reduction of standing armies and for the holding and promotion of peace congresses."^{It's easy enough to say that when the race for election started we were all begging for a change. Our state of mind collectively, as a nation, was as defeated as our economy and our place in the world as leaders. Our previous administration failed all of us, not just Democrats, not just Republicans, not just a certain class of people, but all of us. We needed to believe in our leaders again, at least have a little faith. We needed to feel like we can get back up and be strong and confident and well respected once more. We needed to feel that we would be able to find ways to survive the recession, keep our homes, strengthen our resources. We needed to believe that We too had some say, some sense of control over our own destiny. We were ready to vote someone in who listened, who was thoughtful, who had a more balanced sense of community and fairness. Someone who understood that we were all equal not just under the law of the United States Of America, but the unspoken law of humanity. Someone who knew our place within the world. And so, when Obama spoke for us instead of to us, when Obama kept his composure and didn't succumb to the nasty tactics we have become used to from both sides of the house, when Obama said change is attainable, YES YOU CAN, we did, we voted him in. The world cheered. As it turns out, they needed a hero amongst us too. They needed us to have a leader that respected them. Obama was not just our hope, he was their hope too. I supposed when the world listened to Obama speak, they heard a sense of fairness and truth, accountability and firmness that inspires hope. Finally there was someone in charge willing to listen and ask questions, be reflective. In a time when it all seemed so dismal, here was someone willing to do the unthinkable, he was willing to actually think things through. He inherited the biggest mess any new administration has had to clean up, multitasking would still not cut it. Not only did he have this to straighten out, but in this culture of quick fixes, we expected 8 years worth of damage to be}restored to it's glory in 8 weeks. Yes, it's true there is still a war going on...Yes, it's true the economy is still fragile, though better than it was.....Yes it's true, we are still in a complete mess.....But dignity and integrity have been restored to the office of Presidency. Our President is no longer the worlds punchline, or ours for that matter. That makes a great difference.

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

1 in 91

2009-10-05T18:06:00.000-04:00

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

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

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

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

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

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

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

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

2009-09-30T17:28:00.000-04:00

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

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

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

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

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

Walking around the Neighborhood....

2009-09-29T08:51:00.000-04:00

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

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

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

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

Window paintings......

2009-09-27T16:46:00.000-04:00

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

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

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

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

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

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

My MOACS

2009-09-23T17:38:00.000-04:00

The journey between suspicion and diagnosis is isolating and frightening.

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

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

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

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

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

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

The power of loving a child.

Art & Fear

2009-09-22T10:47:00.000-04:00

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

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

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

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

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

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

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

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

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

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

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

2009-09-18T19:42:00.000-04:00

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

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

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

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

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

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

Behavior modification anyone????

2009-09-14T20:15:00.000-04:00

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

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

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

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

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

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

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

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

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

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

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

2009-09-13T17:49:00.000-04:00

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

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

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

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

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

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

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

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

Choosing to Remember

2009-09-11T17:18:00.000-04:00

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

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

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

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

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

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

Here Comes the BUS!!!!!!!

2009-09-10T20:07:00.000-04:00

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

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

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

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

How much longer?

2009-09-09T17:00:00.000-04:00

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

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

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

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

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

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

Labor Pains......

2009-09-07T18:33:00.000-04:00

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

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

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

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

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

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

2009-09-04T20:14:00.000-04:00

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

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

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

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

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

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

My Bad.....

2009-09-03T16:32:00.000-04:00

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

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

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

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

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

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

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

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

Rest in peace Michael Jackson...

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

Who's bad?

2009-09-02T20:46:00.000-04:00

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

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

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

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

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

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

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

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

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

Yeast rises and my kid falls...........

2009-08-31T18:16:00.000-04:00

I used to think that yeast was something a Monistat commercial was built around, or bread and beer industries thrived on for fluffy goodiness and bold flavor.......silly me......

In the Autism world, it's nothing but bold, aggressive, and quite frankly a physical and culinary nightmare.

Last March my son began to giggle through the night, stim much more frequently, stopped being able to follow simple directions, stopped being able to answer questions, was having inconsolable tantrums, couldn't focus or sit still. There was every indication that it was the dreaded yeast, so I added Threelac to his vitamin supplement regime, biotin, and GSE.. One morning he woke up and told me he had the Chicken pox...thing was he was vaccinated against it...and it wasn't chicken pox, though that would have been a hell of a lot easier to deal with.....Turns out, when yeast die off happens toxins are released and he had an allergic reaction to it......How many different doctors does it take to figure out what to do? How many would it take to change a light bulb? Truth is conventional western medicine failed me. A dermatologist, a pediatrician, and allergist couldn't help me....it took a holistic doctor in combination with a DAN doctor to be able to guide me in the right direction. My son's face became 4x bigger, the bridge of his nose disappeared in the swelling. There were hives on top of hives and it was hot, and it was itchy and it was frightening.
His diet was further restricted to not include anything that could turn into sugar, and that is just about everything. Sugar feeds yeast....Soon the swelling went down and his face was restored, but it took months to get the yeast to containable levels......

Now it's back. Not to the degree where his face paid a price again, but his behaviors are up, he is a bit confused, he is a bit aggressive, he melts down, and he has a hard time following the rules.....just in time for school....Talk about earning a paycheck.....

Many may think that Autism is just a neurological condition. Where the brain is concerned it would be wishful thinking to believe that it could be so contained. But it is also an autoimmune disorder. Many people with Autism suffer from severe gastro intestinal issues, thus the infamous brain/gut , gut/brain connection. We have dealt with leaky gut, leaky kid syndrome for the longest, until we went the biomedical route. I tell you, nothing could faze us. My son threw up so often we could clean up the mess, shower him up and continue dinner without missing a beat. A NASCAR pit crew had nothing on us.

He is very well aware of what yeast can do. He has understood that he was allergic to gluten and casein and eggs, but no reaction was ever this violently carried out on his face. He has a new found respect for yeast, and he hates it, He hates the diet, he hates the hold it has on him and he hates the boundaries it sets for him. he has very little control. He hates the differences, he hates that he can't have ice cream on a hot day, or fabulous fresh fruits (watermelon and grapes his favorite), or cookies, or cupcakes.....He absolutely hates even more how it continues to create even more differences between him and the rest of his world......The difference between the neuro typical world and those with Autism is that when we lash out, it is understandable and we can identify, but when those with Autism express their frustrations, it's behavioral issues, and it's not acceptable. Living with a label can be far more limiting than you think, and not only because of the disorder.

I think of what my son is going through, but I have to confess, the start of the school year a few days away scares me as well. I wanted him to be ready to face another school year on a positive note, and I wonder how much patience teachers who do not know him yet may have, when they are trying to settle a group of excited 9 year olds who have so much to want to talk about, and so much catching up to do....and they have Gabe in the midst, trying desperately to process everything all at once. I hope time is kind to me and I can get him under control enough to be able to interact and enjoy his day.

Calgon take me away? How about Diflucan take this away!!!!!!!!! Nothing like a little yeast to get the party started huh? Makes the itchy, burning issues we ladies can have seem a bit amateurish, cause if a doctor told me that I had to cut back on the cocktails and desserts, I can assure you, I would not handle it as gracefully as my child did......despite any swelling.....which again, leaves me in awe of the courage special needs kids have, and in particular, the strength my kid has. Gabe is something special.

Happy 10th Birthday Gabriel

2009-08-29T23:20:00.000-04:00

10 years ago today, I would have never been able to imagine what Gabriel's path would have been. I was holding my baby, completely in love, thanking God and everyone else I can think of because he was healthy. Cradling him and rocking him in my arms, it was I who was lulled into a false sense of security......

2 years later my beautiful boy would have regressed completely into Autism, a few weeks after receiving his MMR shots.

When you think of those sacred and golden childhood years, you think of wonder, excitement, discovery, every first...You think you are in the drivers seat, but you are a passenger on the greatest trip ever...a second chance at getting to marvel at the world from your child's perspective. When I think of William, and how he would belly laugh out loud while watching Spongebob and then quickly look back to share it with me, or when he would whisper his secrets, or would be completely enthralled by everything festive, every holiday, every celebration...or when I think of Carlos and how he wants to be part of everything and everyone, how he always followed his big brothers around and tried to mimic them, how he had this adventurous palate, and how he enjoyed the sun on his face and the grass under his feet...I am grateful I got a chance to hop in and be enchanted.......

It's easy to feel Gabe was robbed of a chance at a "normal" childhood. It's easy to be heartbroken because he, at 3, was being lead into a Special Needs classroom, because he had lots of therapies, because he lost all his language, because it appeared he was completely disconnected from us, because he couldn't focus or sit still, because he would tip toe silently away from anything that we could relate too or thought he should be able too, because he could not bare the feel of his clothes on his body, or the socks or shoes on his feet, or the noises that for some reason seemed too much for him...because he had chronic diarrhea and had gag reflexes an anorexic would envy.I spent his childhood years stripping everything to it's essence. Back to basics, 101. Every thing was a social story, everything was broken down into small steps. There were visual pecs schedules. There were rewards. There were reminders. There was countless of hours of play therapy. There were doctors visits, the flavor of the month specialist to go to. There were weighted vests, weighted blankets, listening therapies, jumping on trampolines, swinging, spinning, rolling.....There were dietary restrictions and changes...the list is endless....and all done with a careful eye, trying to sew the therapy and treatments into the fabric of childhood my son was to wear. This was his experience, and in the process it was mine.

Yet, the lesson that I have slowly been learning here is that every experience is not only valid and unique, it is equally important and intense. My son's childhood expectations may have been different from his brothers, but it doesn't mean that it was any less of an experience. In our quest for "normalcy" I learned that every family needs to define what that means to them. With every milestone, with every word spoken, with every simple direction completed, with every healthy stool, with every eye contact, with every gesture, with every open and close of a circle of communication, there came with it a wonder of childhood...

I struggle. I would be lying if I said that I am at peace, because I am far from it. I'm still up at all hours trying to figure out what my next step should be, what my next option is, how can I help Gabe develop better problem solving skills, how can I get him to the next level, how I can help him keep up socially with his peers, and how I can help him keep up academically now that more of a global perspective is being required. I want him to be able to have a few good friends, be able to reach out and learn to interact in a way that makes him feel comfortable but at the same time meets his friends needs as well. I want him to be happy, to be confident, to be joyful, to reach his potential....and yet keep tying that into what it means to be 10 to Gabe, as opposed to Will or Carlos......I struggle........

But this little boy who is kind and funny, loving, bright, artistic, gluttonous, innocent, and persistent, this little boy that I danced around the house with, that I rocked to sleep has taken me on a most unexpected ride. I've been challenged by him to rethink, redefine, and learn to be far more open to the natural rhythm of all things with life....I am grateful I got a chance to hop in and be enchanted.........

William

2009-08-27T22:26:00.000-04:00

Soon he will want to venture out further than my eyes could keep watch....And there will be girls, and there will be interest...Far before I am ready to begin to even think about letting him go, he will have kissed me goodbye and raced out the door.......

But for now, my intensely cerebral, laughably twisted, artistically talented, beautiful boy is still mine. He follows me around telling me the storyline of his next comic, or the outline of the new game he is creating. He, consumed by enthusiasm, me, consumed by love, walk through the seasons, and the years, oblivious to the subtle changes......

Until one day, he smiles wide and we are eye to eye.....
Where once I used to pick him up, kissing and snuggling him ..I now reach over, brush the hair off his eyes with my finger tips, and touch his soft smooth face. I am mindful of the transitions, his face thinning and elongating, the definition of his nose, the broadening of his shoulders, the stride in his step....He is tall....His eyes remain untouched, as does his smile......still the same smile.........

He races for the door, turning to see if I'm coming. I'm looking for my keys...they are under some flyers, I'm looking for my sunglasses, as they sit on my head, I'm grabbing at my purse, no where near together, no where near ready ever.....but for now, he is mine, and he waits for me to take him where he needs to go, with a smile and a story......

Now we move on towards the Fall......not so oblivious anymore......

The Lion of the Senate drifts off to Camelot

2009-08-26T13:58:00.000-04:00

"I hope for an America where neither "fundamentalist" nor "humanist" will be a dirty word, but a fair description of the different ways in which people of good will look at life and into their own souls." Senator Edward Kennedy spoke those words during a Speech for Truth and Tolerance in America, Oct 1983.

Thank you Senator Kennedy. You gave me hope for America. Perhaps I am too young to remember the scandals that have shadowed your brilliant career, or the vices that so many have tried to make synonymous with not only you, but apparently your lineage........In my lifetime, you have been a champion in the fight for civil rights, rights for the disabled, for education, for seniors, for immigrants, for womens rights....More than 300 bills were written by you and passed, you signed and helped pass over 500 more...You, a liberal by all accounts, expertly worked with those on the opposing side, finding always common ground to further good causes. You took your job seriously...perhaps for respect, or redemption, as some suggest.... but I suspect it was because of a deep belief in humanity, a deeper sense of responsibility, and a real vision of what we could be if we work harder. As a child I learned about the roles your brothers played in our history. Growing up, I benefited from the role you played in our lives. As a mother to a special needs child, I am indebted to the work and the compassion your sister Eunice embodied as she pioneered the Special Olympic movement, as well as the work you put into the disabilities act. America is all the better because the Kennedy's had a vision, because the Kennedy's were passionate about public service, because the Kennedy's believed in equality, in quality of life, because they did ask what they can do for their country, and because they did dream big.

It's easy to focus on the flaws of those we insist live up to standards no one possibly could, and do it all under public scrutiny. But Senator Kennedy, despite his past, in spite of his alcoholism, was able to remind us all that we have an obligation to each other, to our families, to our communities, to our children, to our elders, to ourselves, to our country. He was larger than life, he was flawlessly human.

And now the Great Senator of Massachusetts is gone, just when we need him the most. We need someone in that Senate that could find common ground and work towards fair, good and necessary causes, like universal health care coverage, Senator Kennedy's great passion. We need another Kennedesque figure who would be able to be the voice of reason.

"The work goes on, the cause endures, the hope still lives and the dreams shall never die"

Perserverating on Popeye....

2009-08-25T14:00:00.000-04:00

Gabe's new fixation is Popeye. Go figure, Popeye the sailor man absolutely fascinates him. He came across the Boomerang channel and discovered a whole new world, Hanna-Barbera/ Warner Bros style. Classics I grew up with, Bugs Bunny, Tom & Jerry,Yogi Bear, Huckleberry Hound, Snagglepuss (love him), The Flintstones, the Jetsons, now belong to Gabe...I walk into my living room and it's the 70's all over again...For some reason, in his mind, Popeye reigns, his pipe, his theme music, his need for spinach and the muscles it gives him...the way he laughs and talks, Wimpy and his hamburger obsession...2 o'clock comes and Gabe stops everything to watch "his favorite show"......

From the outside looking in, many may find themselves quite removed from our experiences. They may not be able to readily relate because the behaviors our children have sometimes are rather extreme. From the inside looking out, however, a whole new understanding takes place. We realize we have more in common than we think, don't let the neurological rewiring fool you.....

When Grease first came out I begged everyone I knew to take me to see that movie. I saw it 17 times that summer. I knew all the songs, all the dance steps, and even though they were 34 year olds playing high school kids I was completely sold....I had chills, they were multiplying...when I wasn't seeing the movie, I was listening to the soundtrack. Had Gabe done that, we would have said he was perserverating. I saw St. Elmo's Fire another 17 times, granted, I had a mad crush on Rob Lowe, but I knew it inside out and outside in....perserverating? Hormones? Combo of both? Same could be said about my musicals...West Side Story? Gigi? An American in Paris? Fame? Flashdance....What a feeling!! Perserverating to the 10th potential....

How many of us have been fixated with a tv show, a song, a group, a band, a sports team, an ex boy friend, ex girlfriend, an ex anything, an actor, a specific moment in time, an event, a trauma, a dream..etc, etc, etc ..How many of us could be easily redirected from whatever engrossed us? We are an obsessive culture. Somewhere along the line we have become so engaged that we have become an abstraction, completely disconnected in so many ways... Our collective fascination with our celebrities, status, sports, entertainment, escapism makes me wonder, just what distinguishes art versus life, versus voyeurism, and where do we draw the lines?

The topics that our children lose themselves in are not much different, their shows, dinosaurs, music, sports, videos, computer games, search engines, youtube, etc..the only difference is that at times it becomes all they can talk about, if they can talk, or all they want to connect with. It's far more difficult for our kids to redirect, and embrace other topics of conversations. It is precisely at these moments that I wish there was a greater sense of affinity with our kids, where those that look on believing they can't relate, reflect on a time when everything they thought they were, or wanted to be, or was delighted by, was reduced to this one thing, and they were completely consumed.

Lately when I take Gabe out he asks everyone their name (he's very friendly) and when they ask what his is, he sings "Gabriel the sailor man" gives 2 toot toot's and flexes his muscles, says he eats apples they make him strong...He winks and he continues to talk about Wimpy and hamburgers and Popeye....I suppose it could be worse, it's Popeye, not South Park....which would probably make for very interesting reactions, but I have enough explaining to do, thank you very much.....

Still I remember a time back when I was in high school, and my dear soul sista friend would sign her name Mrs. Michael Jackson, no song, no toot toot, but there was a definite wink, spin, moonwalk and toe stand....hee hee....shamon.....

Stars, Moon, Prayers........

2009-08-23T21:44:00.000-04:00

There is a stillness tonight that is quite unsettling. Prayers, set free into the night sky, hang like stars clear in it's intent....waiting to be answered. I am humbled by how fragile life really is.

Just this afternoon I dropped my son Carlos off at one of his best friends house. It was his friend's birthday, they had the afternoon filled with activities.....but after a quick phone call to come pick up my son before schedule, I knew something was array.

What seems fair, what doesn't, what seems so wrong or so right, or so real, or such a game means nothing next to who is left behind, or how a life is lived. While we all make sure that our loved ones are safe, we lose sight, sometimes because of life's constraints, or time's restraints, that what is most important is our connection to one another.

I think back to my wish list for summer, all the quality time I was going to spend with my kids, all the places I would take them, the things we would do, and what was actually done shames me. Somewhere in my efforts to find my way out of a maze, I dug myself into a hole. Yet, it was the time spent doing the simplest things that mattered most. That late night board game, that jump in the pool, that walk to the beach, that weekly television show we all cuddled up to see......
The things I have said, the things I wish I hadn't, the thoughts I never found the emotional courage to release, or the ones that wouldn't make it past my pride: easing the guilt with secret promises of I'll do better, I'll try harder, I'll be more patient, more forgiving, more, more more......Finding myself at a moment like this, were the worth of my promises to myself are no different than the promises of a child who really wants something.......Now what was it that I wanted?.......permission to go on with a clearer conscious because I refused to accept my own limitations?

My friend was rushed to the hospital tonight, her family by her side. This afternoon when I dropped Carlos off we chatted and I walked away lighter, chuckling, which is how she usually sends me on my way. While we wait for word on how she is doing, I think of the wonderful relationship she has with her kids, and how her son, who wears her smile, adores her. My son is worried for her, and for his friend. It's the first time I have ever seen him tear up while asking me if she will be all right. It's the waiting that forces you to reflect. It's in the waiting that reasons are stripped apart and reconsidered, that actions and reactions lose their intensity, that second chances are negotiated, that perspectives are shifted.

And so in the waiting, in the stillness of this most unsettling night, I release my prayers for my friend and her family, and watch as it takes its place amongst the stars and the moon.......

I am humbled by the frailty of life............

'

Carlos

2009-08-21T19:33:00.000-04:00

His long lazy curls swerve and rise like undulating playful waves racing to the shore. From the distance I can see the sun dancing on the surface of his silhouette, making little distinction between ocean and boy.
This child of mine is summer.

He bounces from moment to moment with ardent expectations only an almost 9 year old can have...chasing fireflies one minute, his older brothers the next, always on the hunt for fun. His presence lights up a room. His eyes quick to welcome you in on the joke..or the secret. His spirit always willing to embrace.

When he was a toddler, every Thursday there was a mothers support group at Gabe's Special Ed pre school, Just Kids. We were still in midst of the whirlwind of digesting the Autism/ADHD diagnosis. I was at the point of trying to wrap my head around what was actually happening to my child and what that meant to my family, while I was struggling to keep my heart together. On the ride home, from the back of the minivan, I would be serenaded by Carlos, not kid songs mind you, but whatever current pop song he had memorized....His first was "Since you've been gone" by Kelly Clarkson, sung with a smile and a uplifting beat....the way only he can do things,and every time he sang "ya, ya" with his facial expressions keeping pace with his head nods, I would be transformed, he was just so funny.....and so sweet....

I'm fortunate to have 3 boys. Here I am trying to teach them how to be independent free thinkers, kind, strong, compassionate individuals and the reality is that in the process it is these 3 boys who have taught me how to let my guard down, how to reach out, how to take chances, and most importantly how to trust my instincts and begin to forgive myself for my unforgiving list of imperfections......

Carlos is joy, he is warm, funny, mischievous, open, silly, full of life, full of wonder, willing to believe in just about everything and everyone. He loves with the same innocent endless enthusiasm as Christmas morning....and he runs with the same burst of energy as a summers rain.

I hear him laughing in the background, without a doubt his nose is scrunched up and his head is thrown back......all is light, all is bright, all is open....This child of mine is summer.

Half empty, half full, half assed......

2009-08-20T22:31:00.000-04:00

In grade school we were given the proverbial half empty, half full question. I'll never forget it, it's one of those moments when you can't help but sing in your head, "one of these things is not like the others, one of these things just doesn't belong"...then not only do you realize it's you, but everyone else does as well....

I went to a catholic parochial school, which automatically scars you for life, at least it did me...stigmata...

Anyway, I was in 4th grade and Mrs. Perrone held up a cup and said "imagine this cup was filled half way, would you say it was half empty or half full?"...Everyone was giving their answers and when she got to me I was stumped. I could tell she was starting to lose her patience when she snapped at me, "listen, how hard could this be you have 2 choices"..... so I blurt out, " but how am I supposed to answer that if I don't know what's in the cup, and if I don't know how thirsty I am? What if there is something I hate? I'd have to be real thirsty to think that half full, and if it were something I loved, it wouldn't be enough...and what if I wasn't thirsty at all? What if it was just right, the perfect amount?..." and before I could keep going on with the rant, she pulled me out of the room to yell at me for giving, in her words, a very stupid answer...she told me to focus and stop over thinking everything, that there were only 2 answers, and I would have to write a paper giving one of the 2 and have it to her by the next day......

The reason why I bring this up today is because I was flipping channels and there was a discussion about how an optimistic attitude verses a pessimistic one from both the patient and the caretaker can make a difference in the health of someone battling a chronic condition or a terminal one. That a positive outlook was important for quality of life. And while I can see that; as a realist I have to question, is it a mom looking at the life of her child with special needs, and the very real obstacles in the child's way from their basic rights as a human being to their basic rights as citizens? Or is it a daughter or son of an Alzheimers patient, or a spouse of someone with ALS? Or anyone watching a loved one deteriorate and suffer....Because the support you receive from the environment you have to live in, school districts, doctors, specialists, insurance companies, research, friends and extended family, community, that all matters, that all makes a difference. Not all diseases and disorders were created equally, or have equal support systems in place, or have the answers necessary to make a difference to real quality of life.... Would they see that proverbial cup as being half empty or half full, or would they at that point just focus on what's inside that cup and learn to savor it and make it last as long as possible? Or in my case, hand it over to my son with about 25 different vitamins and supplements and hope that it helps him.

I believe hope carries more weight when there is thought behind it, and even more so when there is a strong communal sustenance. Even the optimist needs the right support to be able to continue to feed it's positive addiction, I mean attitude. It's never as easy as a cup half empty or half full...and if life outside of the 4th grade taught me anything Mrs. Perrone, it's that there is rarely ever only 2 answers, if you really think about it, even the optimists and the pessimists know that........and if you knock a kid over enough, she/he won't be half empty or half full, just totally screwed up.....

Now, I'll tell you what a cup filled half way means...you have to finish pouring... toast to your health, to the health of your loved ones, and hope we find a way to give coverage to all......
A votre sante

PETA how Petty.......

2009-08-19T11:07:00.000-04:00

I have a hard time understanding how groups that claim to focus on awareness and the humane treatment of animals (which I am all for) can so often irresponsibly, recklessly, maliciously, and brazenly degrade, dehumanized and objectify women. But then I have a hard time being able to respect anyones opinion when it comes at the expense of an innocent bystander.

PETA, the infamous animal rights group, decided it was a delicious idea to put up a billboard in Jacksonville Florida with the caption "Save the Whales, lose the blubber, go vegetarian" and right along side of it was the image of the back of an obese woman, in a red polka doted bikini. They further justified their actions by suggesting that they were reminding residents struggling to lose weight that going vegetarian was an effective way to shed those extra pounds and keep them looking good in a bikini. The Vice President of PETA, Tracy Reiman then topped off this sundae of a statement with this quintessential cherry.."trying to hide your thunder thighs and balloon belly is no day at the beach".........

..
I am a big defender of animal rights. I believe that they should be treated humanely. I cringe when I hear hunting called a sport, and I seriously think that using population control as a means to justify the cruelty that takes place is obscene. There has to be better ways of dealing with these issues. We keep taking over their space and then retaliate with bullets when they wander into ours...go figure....Fur coats? Again, cringe..it's cruel...Beauty product testing? Not...Now when it comes to medicine and finding cures, I hesitate...I think of my children, my loved ones and I have an issue with black and white answers here....

But hey, aren't we part of the animal kingdom as well? Then why is it that it's fair game and open season on women? Whether society thinks they are overweight, or too old, or too opinionated...or too pretty to hold a discussion or too plain to be worth anything.....When did PETA think it ok to objectify women to sell a movement..having thin models and actresses highlighted in the "I'd rather go naked than wear fur" but then try to demean them when it comes down to starting another one? Becoming vegetarian to lose weight? Are you kidding? Look good in a bikini, get naked, wear lettuce bras? When did they think it ok to manipulate who we are at our very essence; thoughtful, creative, intelligent, strong, maternal, understanding, beautiful human beings, and turn us into the next publicity stunt? Do they think us that worthless? If these campaigns were made to spark thought and conversation, exactly what were they expecting us to think, never mind say? Perhaps they think we can't, because it appears we have gone along with it for so long and struggled to fit into a stereotype that just isn't realistic for everyone, like 99% of us.....That after all is said and done, it is always ok to use women as they see fit and then discard until the next incensing ad campaign? Just how is awareness given any real justice when the needs of animals are being deliberately put aside to continuously promote the exploitation of women. Not too long ago television broadcasting networks were firing seasoned talented anchorwomen and replacing them with what they considered younger, prettier versions to up the ratings. Not to long ago, a rape victim was accused of enticing her attacker by questioning what she wore. Not to long ago, women past the age of 40 were considered over the hill. Young women now, ignorantly say they are not feminists with great pride. We need to bring the movement back front and center and start the conversation back up again. We come in all sizes, all forms, all ages, all nationalities, ethnic and religious backgrounds, and it's all beautiful. And their is a place for all of it, and there is absolutely no need to objectify it, there is an absolute need to embrace it.

For the record, there is a real problem off the coast of Japan with the slaughtering of whales, and of dolphins, but I guess that didn't offend PETA enough as a voluptuous woman enjoying herself on the beach.

Here's the irony...One of the very reasons why I became a vegetarian over 25 years ago, was because I personally couldn't stomach eating anything with a face or brain. If it could have eye contact or feelings, I couldn't enjoy it. I accept the whole food chain, but I couldn't get past it. I can honestly say that I have gained a tremendous amount of weight, because guess what? Pasta, bread, cheese, sauces, cake, ice cream, chocolate, pizza, cookies, potato chips, wine, cocktails...all of these things don't have eyes or a thought....So, a vegetarian diet isn't going to make you thinner, but eating right, eating smaller portions, whether you are a meat eater or not, will help you out as long as you exercise as well...which by the way I haven't done...So in the meantime, I prefer the term Rubenseque, voluptuous, curvy, well rounded, or healthy....I am woman hear me roar......Who am I kidding, I spend the whole day yelling at the kids, but still.......

So excuse me while I wiggle my way off the soap box, PETA just may harpoon me............

Nena

2009-08-18T09:49:00.000-04:00

Her favorite flowers were daisies, or "margaritas" as she would call them. Orange and yellow were the colors she was most drawn too. She would sip her Cuban coffee from an old dented tiny tin coffee mug all day long. Born in Orense, a tiny town in Galicia, Spain, she claimed Cuba her home. Her kitchen was legendary amongst her friends and family. Her character legendary within the circles she traveled. She was larger than life though she never made it to 5 ft. Had she predated Napoleon, he would have carried her complex, instead of the other way around. Her cocktail of choice was Pernod with orange juice, after a trip to Paris. She chased culture the way teenage boys chase girls, unabashed, unapologetic and at times a bit intimidated. She never allowed my brother or I to call her Grandma or "abuela" because she refused to grow old, and that was a title that made her feel old.

My grandmother would have been 94 years old today. Somewhere between her late seventies and very early eighties she must have developed the Alzheimer's that would eventually claim her life. I was born into a world where Alzheimer's existed alongside lullabies and fairy tales. My grandmother nursed her mother, who had quickly fallen into this affliction and so she was well aware of the steps leading to and the progression of Alzheimer's. When she secretly suspected she had it she began to give generalized answers, and skillfully distract us so that we wouldn't detect discrepancies in her behavior. She was fiercely bright and independent. My grandfather would play along and protect her. He always did. Unfortunately there is no alluding Alzheimer's, trickery soon falls short.

The irony was that 2 weeks after Gabe was diagnosed with Autism, both my grandparents were diagnosed with Alzheimer's, each on a different place on the spectrum. My grandfather was still mild, my grandmother, as always, far ahead of him.

I know I am not a scientist, or doctor, but there is no doubt in my mind, gut, heart, hell, every bit of my body, that our environment, our lifestyle effects our health perhaps even in a more pervasive way than out genetic predisposition to things....Our environment changes our genetics, our makeup. It's evolution. There is no alluding nature. If you mess with it, ultimately it will mess with you. We have seen auto immune disorders and diseases soar. We are in the middle of a global Autism epidemic. In this debate of health care, there should be a focus on lifestyle and the toxins thrown into the environment. Everything is so intertwined that if we are to fix one problem we need to open the discussion on contributing factors. The truth is, like a Russian doll, we are living organisms within living organisms, within living organisms, and our survival is dependent upon a balanced ecosystem. Despite being high on the food chain, the totem pole of life, ultimately we are all on equal ground, without one the others stop existing.

My grandmother lost her life after the ravages of Alzheimer's took it's toll. As she left , Hurricane Katrina hit hard and waged such a furious battle, 4 years later we are still recovering. This is what happens when the government doesn't respond as quickly and efficiently as it should, or when life and what could harm it, is overlooked. There's a pattern here.

It is easy for anyone that has never lost a loved one to Alzheimer's to dismiss it as an old persons issue, to forget that there is a vibrant, exceptional spirit trapped in a disintegrating brain. To this day I find notes stuffed in her old cookbooks describing the angst she felt knowing her fate. She knew there would be a moment in time that she wouldn't recognize us, her friends, her life...that she wouldn't be able to share and interact, that she would be left alone, behind and she also knew well the heartache that it would cause us all. Alzheimer's is cruel , unforgiving and devastating.
For years her parting words would always be "don't forget me, tell your kids about me, and how I loved them, and how they made me happy".....and on her death bed, after 3 years of not knowing who I was, she remembered, and desperately tried to tell me something, but the words failed her. I suspect she would have told me to make sure I take care of my mom, but more than that, to remember her as she was, vibrant, colorful, loving, intelligent, sharp, youthful, bossy, opinionated, religious, faithful, loyal, endearing.....

Her favorite time of the day was the sunset, when orange and yellow played in the sky...........
How I miss my Nena..........

What would Jesus do?

2009-08-17T16:16:00.000-04:00

Hard not to believe in anything on such a brilliant summers day. My sons race across the yard and fling their bodies into the pool disappearing into water, the raising bursts of the waves hinting where they've fallen...You can hear them laughing, yelling, daring each other to do different tricks....And for a few minutes of what seems like suspended time, normalcy, by the conventional definition I was raised with, accompanies me. Jesus, Gabe is just like the rest of them, laughing, twirling in the water, floating on tubes and swimming confidently.....I hear him shout "look at me" "watch this guys", and I am in heaven...I still secretly count the number of words used in each sentence.
Conventional normalcy gets up and walks away and my reality jumps in to rock my moment.....Gabe had run out of the pool and found a wondering box tortoise (we get them every summer), shakes it like a maraca and puts it down his swim trunks, then grabs a hose, turns it on and sticks that down his swim trunks too, throw in a few appetizers and cocktails and there's a party going on in Gabe's pants.....Well, what is a party for one, is water boarding for another...and apparently, this is what Will thought was going on and quickly rescued the tortoise...You think they are slow? This one was out of my yard in a New York minute...
Never seen a tortoise move so quickly. I suppose if you want to win a marathon, instead of training for months, spend the few minutes with Gabe, his swim trunks of wonders and a hose and you'll beat everyone to the finish line....
It wasn't long after that the excitement got the best of him. He began to vocally stim and flap, skipping towards the trampoline, then jumping his way back to self regulation...With every bounce calming clarity. Quietly I go through my list of things I still want to do with him, what vitamin might help what, what exercise may reduce the need to flap so continuously... What new treatment can get him to the next level....How to get him ready for the school year...For years I've tried to out think Autism, and I have beat myself up for feeling like it's just not enough, I'm not enough...The voices in my head, judge, jury, prosecutor and defense making cases as to why I fail, what fails us, and then there is that little voice that raises above it all, and reminds me that there was a time when play was only parallel, when the words were trapped in his mind, when he could not stand to keep his clothes on or sustain any eye contact, or make any connection much less invite anyone to watch him do underwater somersaults or stand on his hands.....As much as it deeply hurts me to see the growing divide between what a normal 4th grader is like and the immaturity that Gabe thoroughly embraces and relishes in, I know that this too requires incredible maturity on my part to find those connections between him and his peers: and teach him to how to do that too, just like we taught him how to calm himself down on his trampoline, take deep breaths and move on......
I have an acquaintance who has a child on the spectrum, and she handles just about everything Autism and non Autism by one simple question...."what would Jesus do?"......I asked her how that was working for her, she mentioned that she found she had more tolerance, compassion and kindness for her son and her struggles, and that it gave her great calm and peace to know she had the Lord by her side. Happily, it works beautifully for her...Here's the thing....when I think of what would Jesus do, it's so simple, water gets turned into wine, lemonade into limoncello, raise a few from the dead, or at least a stupor or 2, feed the hungry, cure everyone, bring peace, enlighten the masses and have a great party... except maybe not in Gabe's swim trunks...When Jesus asked us to think for ourselves, question authority, be kind, be compassionate, help others out, respect...it got him crucified.....What would Jesus do? I am asked...real question is, What would I do? What can I do? What should I be doing to help Gabe and kids like him live the best life possible. I'm not religious person. 12 years of catholic school and still I struggle with everything....
But it's hard not to believe in anything on a brilliant summers day....So I choose to believe in life, in family, in energy, in friendship, in love, in art, in the sunrise and the sunset and all that falls in between.......Gabe sits next to me blowing bubbles into the sky, like prayers released, I hope for enlightment.............

Married with Children

2009-08-16T14:57:00.000-04:00

A month shy of 16 years ago I married this man. Carlos and I had dated for 2 years and had you asked me then, at 26, if I was ready for marriage, I would have smugly said of course. I would have defensively debated you on how the 2 years courtship was a metaphorical resume that would not only sum up my qualifications for the job as wife, but would have also guaranteed our success. Two snaps, a circle and a neck roll later I would have strutted my way down the carpeted aisle of petals and ribbons, opening the doors to a reality I thought I would be familiar with, only because I have rehearsed the scenario so often in my delusional mind. Needless to say, what we imagine something to be, and the reality of what it is, can be quite sobering......especially if you watch way too much tv like I did.....I wanted the Cosby Show, Family Ties, but it's really more like Married With Children and Roseann people.......
When I think back to where we started from and what we have had to face, when I think of all the tantrums, all the tears, all the unexpected surprises, good and bad, all the loss and all the gifts, the insecurities, the hurt, the passion and compassion, the laughter,the growth, the sacrifices and the rewards, the birth of our children, the change in our lives...and the love it took to sustain it all, I am awed....When I think back to the day I came home heavy with the uncertainty of a devastating Autism diagnoses sitting on my heart, and the way he still believed in our son and in subsequently believed in and supported my efforts to push Gabe ahead....or the way he stood by my side and comforted me as I watched helplessly as both my grandparents slid into Alzheimers.....I am profoundly grateful.....
Marriage has been so much harder than I would have thought it should ever be, so much messier, so much more vulnerable, complex, layered, and ridiculously bare. Here I was at one time thinking that it would be fun, an adventure intermixed with fixing an apartment and planning a life, but as with anything real and purposeful, planning a life evolved into making the most out of life.
Not that I'm much more prepared now than I was 16 years ago to walk down that aisle......
The only difference now is that I've learned to accept my inner Roseann, Carlos's inner Al Bundy...and the delusions of grandeur are as far behind me as the size 4 dress I wore on that day...
Still after a month shy of 16 years, I love him......

When you lay down with dogs.........

2009-08-15T16:24:00.000-04:00

My home is dominated by testosterone. Just about everything in it is male except me of course, and 2 of my 3 dogs. I have a 14 year old senile long haired chihuahua named Lexi and a one year old Great Dane, Clementine. One of us woke up today with her period. This is my luck, so take a big guess who......
Now, this is the second time she has gotten "her little friend" and I tell you, there is not much difference between Clementine and her female teenage human counterpart. Clem breaks out, she gets moody, needy and sentimental. She wants to eat, she wants to cuddle, she wants to be left alone, she barks more than usual, her nipples swell, she's bloated, sore, and I'm pretty sure she's flipped me the bird a few times over.........If she could slam a door I'm betting she would!! Thank God she has no opposable thumbs!!!!!
Before this problem got messier, I figured I take a ride to the pet store to find a solution.....The shop keeper tells me that the best thing to do is to put my sons underwear on her with an Always pad inside (with wings) because quite frankly the pads she sells would never fit her.....
Uneasy, I came home, looked through the drawers, found a suitable pair and strapped on a pad with wings.....I was good to go, I was thinking positive, had a few treats to try to distract her, tried to keep calm cool and collected....She gave me kisses, tricked me into believing I had a chance...Then I made my move, and she made hers....I put her foot into the underwear, she took it out, I put it in, then she shook me all about....we did the hokey poky and she turned me upside down...I ended up with a pad strapped onto my forehead and my positive attitude, like a thong, shoved deep in various crevices.....This meant war.....We made eye contact, she licked my nose. I didn't fall for it this time. We wrestled, we grappled, kids were trying to help hold her down, kids were being tossed everywhere like rag dolls...I mean "action figures"...(they are boys)....finally victory was mine....the underwear was on, backwards, but that's ok, and she sat exhausted, grumbling and thirsty.....and it lasted all of 5 minutes before she ripped off the underwear and ate the pad.....
And just like that I became Clementine's Bitch.....until it's my turn.........