Paper Hearts

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

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

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

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

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

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

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

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

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

Breath

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

First Haiku that immediately came to mind:


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


The second:


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

St Vincents Hospital

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

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

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

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

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

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

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

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

Uncanny

Haiku this week is Uncanny


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

Promises, promises

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

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

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

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

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

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

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