AARRGGHHHH

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

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


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

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

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

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

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

Peace

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



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

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

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

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

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

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

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

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

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

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

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

Incandescent

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

Here goes......


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

One Beautiful Dreamer.......

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Trembles

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

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

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

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

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

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

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

A night at the ER......

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

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

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

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

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

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

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

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

Electrifying

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


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

Snow fall

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

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

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

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

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