Adam Dzialo

Adam Dzialo
Our son, Adam Dzialo, age 30

Tuesday, December 27, 2011

Yes, Virgina, the Grinch Exists (in Saugus, MA)

Richard Langlois, the Grinch of Saugus

SAUGUS, Mass. -- Santa’s plans in Saugus took a downward spiral when the superintendent of schools tried to cancel a nearly 50-year tradition.
“We were being told that the Santa Claus was not to go to any of the Saugus public schools,” said Mark Gannon of the Saugus Fire Department.
Saugus firefighters donate their own money, union dues, and time to help Santa deliver coloring books to more than 500 preschoolers and kindergartners via a "red sleigh."
“As soon as Santa walks into a room, the teachers love it too ‘cause the kids are dead silent. They are just - mouths open, looking at him, they can’t believe it. They’re quiet, they do everything they’re told. Nobody wants to mess with Santa,” said Gannon.
But Superintendent Richard Langlois did, and he said he was just following rules. (Channel 7 News whdh.com)
Read more: http://www1.whdh.com/news/articles/local/north/12006204912426/saugus-santa-tradition-almost-cut-due-to-school-policy/#ixzz1hkSJg9L9  (Check the picture and see if this could in any way approximate a religious figure, no matter how wild your imagination.)


    So, this idiot of an excuse for a school leader banned fire fighters who freely donated time, costumes and coloring books from sharing acts of kindness in the lower elementary students in the the Saugus, MA schools.  Of course, he had a rationale: Santa Claus is a religious figure and there is somewhere written that church and state should be separate.  You know, the Church of Santa ...the one in every mall and department store.  .And of course, this is height of stupidity,  How someone without a smattering of logic could ever be a school superintendent evades me...but I guess there are many like him.  Same type who would probably have no qualms about relegating sped kids to basement rooms.
    Santa, is a conglomeration of many figures of myth which predate Nordic times.  Maybe they were associated with religions thousands of years ago, but so were trees, the sun, bunny rabbits and cupid.  Maybe we'll banish eggs, and bunnies and Valentine Cards (no offense to the mythical RC St Valentine).  Let's work at sanitizing the schools and the lives of kids.  Let's make believe that there are no differences among people.
    Morons like this dude, have tried to banish :  "Huck Finn," "Aesop's Fables," "The Catcher in the Rye" and " Lady Chatterly's Lover" from school libraries....like this stuff  doesn't happen in school halls in front of the glaring eyes of administrators all the time.
    So in one fell swoop of the axe, the good will of fire fighters and the innocence of children is destroyed because this idiot declared  Santa to be a god actually, a religious figure),,,let's all light a candle in front of a statue of a Santa and pray to him for a miracle ...that the school committee fires his ass.


Thank god, he rescinded his decision ... after death threats were reported in paper.

Check the following blog for a local parody!  Also are bonehead's address and e-mail!


     


The North Shore Tab

A cute, but cutting local editorial about  Richard Langlois,  The Grich of the Saugus Public Schools

The North Shore Tab (click for suggestions)

Now seriously, folks, does this look like a religious figure?

Sunday, December 25, 2011

The Gift.....Our Gift






Adam's Gift from Aimee and Tony (12/25/2011)

Once a goalie, always a goalie

Adam in goal, Spring 1998


Thursday, December 22, 2011

Winter Solstice: Rebirth, Renewal, Rejuvenation...

       The Winter Solstice will occur at 05:30 UTC on December 22, 2011.  With this re-adjustment of our planet's axial tilt, nights gradually become shorter and daylight gradually increases.  This primordial event which predates all life on this planet is so significant...there is more light, more evolution of consciousness, renewal.  There is little doubt as to why the lives of many deities, many pagan celebrations, many world events center about the time of the solstice.  Astronomical events, which during ancient times controlled the mating of animals, sowing of crops and metering of winter reserves between harvests, show how various cultural mythologies and traditions have arisen.
     




  We celebrate the re-birth of our son today...a movement forward, a renewal of our spirit, a grasping for more light. 
        




       We celebrate a renewal of our commitment to Adam and his continued healing.  






    






  We celebrate a renewal of the source of all energy as it shines upon us and all who strive to recognize the purity and the perfection of our son.









       We celebrate a renewal of the message...the sun will continue to shine more brightly each and every day...world without end.






        We celebrate the ceaseless, unending smile...a clear and unequivocal indication that life is worth living and that life has meaning in itself.







      


        And, of course, we celebrate Adam's personal guardian angel, Ollie!


       To all our friends, followers and fellow journey men and women....a blessed Solstice, renewal, light, a a brilliant sun shining upon you, your children and your dreams.




Saturday, December 17, 2011

Sustaining Life....


       Not a day passes by me without a serious reflection upon what sustains life in our severely disabled children and adult children.  Against all medical and mathematical odds, they survive and thrive.  Against the backdrop of a society which stigmatizes the compromised, they survive.  In the world of western medicine, despite cutting, implanting and medicating, which are commonplace routines, they survive.  In the myriad of strangers and others who blow in and out of their lives, the disabled face people who look away...the other way, they survive.  In a system of dwindling resources and respite for their care givers, they survive and live.
       There is suffering, floating in and out of consciousness; bodies deformed by spastic contractures; bodies incapable of many controlled basic functions; bodies which are probed and examined and invaded; spirits which could be crippled by the indifference of people who should care and do not.  There is deep suffering in their cellular awareness that the outside world perceives their lives as not worthy of life itself.  There is suffering in the spiritual knowledge that mom and dad may not be around forever, and that no one has stepped up to fill these voids.  There is an intuitive belief that they may be a burden, that their needs are overwhelming.  Yet life sustains itself, and always with a smile...that smile which sustains the caregivers and that smile which itself is sustained by the unconditional love of the parent and the care-giver. There is no indignity when care is given because of that love.  Unconditional love requires nothing in return...unconditional love is a gift particularly reserved for the disabled.  This love sustains life because it permeates the very core of being; it is sensed at cellular levels and allows life to pursue life.
       I often view institutions, hospitals and group homes as places devoid of this level of love.  Great care, great medicine, great homes never communicate the level of unconditioned love to those who need mom and dad forever.  The greatest  fear of parents is that their children will be alone, alone in living and alone in dying.  We are the mechanism of sustaining that life force in our kids; kids unrecognized for their contributions to the evolution of human consciousness.
      I am amazed that people worship a man who suffered for several days, was betrayed by friends, was given up by supporters to an indifferent government, beaten and killed over a course of three days.  Myth has it he rose a few days later.  Yes, he suffered and yes, he died.  Does the suffering and the betrayal of the Christus compare to the suffering and social and betrayal of our kids?  Not for three days, but for 3 years, for 13 years for 60 years...suffering more intense and more prolonged than that endured by a man who others claimed to be a god.  Perhaps, he did not experience that unconditional love that children have; maybe that's why he folded?  Lessons to be learned? I, perhaps, believe that our children, disabled and pure of spirit are gods.
       I remember a lifetime ago (just after Adam's accident) receiving a card from one of the parents of a boy who played hockey with Adam and who had just seen him.  He said that it "was like looking at the face of god."  The comment has never left me..


      The lost gospel of Mary of Magdala (the supposed wife of Jesus and mother of his two sons) was discovered in Nag Hamadi in the 1940's.  She, of course, was in a power struggle with Peter, who denied the lord. This misogyny continues 2000 years later.  Perhaps that's why the gospel was suppressed?  The fragment found contains her final words which she learned from her lord, "Know ye not that ye are all gods?"  I believe that our vulnerable are gods and their life sustains because of unconditional love, something which was not active in the life of the Christus.  So many lessons to be learned, so much knowledge to be unearthed.  I believe that the source is in our midst and is sustained by unconditional love.
       We can never allow our most vulnerable to be exposed to care and homes without deep unconditioned love; this is a death sentence.  We sustain life; there is no single more important task or event that any parent can share in.
       Of course, I have long abandoned the notion of a personal deity and I believe that religions poison everything. (Hitchens, 2007: "God is Not Great: How Religion Poisons Everything)  Religions also stigmatize and devalue the disabled.  How few churches/temples have ramps and are really accessible!  How many religions still believe that disability is a punishment for someone's sins?  How many religions believe that disability is taken on by a "victim soul"?  How many religions believe that the disabled are here waiting to be healed by a miracle because they are less than perfect?  How many disabled kids are viewed as "pillow angels"?  Without religions, we can fully honor their sublime divinity and full humanity.

“Those of us who write and study history are accustomed to its approximations and ambiguities. This is why we do not take literally the tenth-hand reports of frightened and illiterate peasants who claim to have seen miracles or to have had encounters with messiahs and prophets and redeemers who were, like them, mere humans. And this is also why we will never submit to dictation from those who display a fanatical belief in certainty and revelation.” 
― Christopher Hitchens

Christopher Hitchens
N.B.and P.S.     Hitch (Christopher Hitchens) died a few days ago at age 62.

A recent blog tribute to Hitch written by neuroscientist Sam Harris  HERE


What can be asserted without proof can be dismissed without proof.” 


Friday, December 9, 2011

Messengers...Our Duty as Parents of the Disabled

Elie Wiesel
Remarks at the Dedication of Yad Vashem Holocaust History Museum
Delivered 15 March 2005, Jerusalem, Israel


There is a frightening character in all of Kafka's stories. It's always the messenger who tried to deliver the message, and is unable to do so. We feel sorry for a poor messenger. But there is something more tragic than that: when the messenger has delivered the message and nothing has changed.



        We are the messengers and it is imperative that we continually and repeatedly keep delivering our message about the plight of the disabled.  Over and over again!  Until that point in the evolution of human consciousness that society provides our sons and daughters all the necessary supports to live lives which are worthy of life itself.  The invisibility, the stigmatization of the disabled must become a thing of the past, not by law or legislation, but by a change in the belief of the dignity of every person.
        I salute and honor every messenger, every blogger, every advocate who calls for a new world where institutions are closed and families have all the resources and supports to care for their own...if we can subsidize oil companies in the U.S. and bailout the biggest lenders, we can provide for the most vulnerable of our society and their committed care takers.  The resources are unquestionably available, the priorities are skewed.  It is in this quest that we become human, to turn away from this responsibility is inhuman.

ADDENDUM:
       I just found this passage from Weisel which explains why there is a need for parents tp continue being messengers, even if no one hears:

The Elie Wiesel Foundation for Humanity
He told the crowd the story of the sage who visits a town dripping with corruption, from government on down to the people who live there.

“He would go to the marketplaces and from one street to another, saying to people, ‘Wake up! Wake up! Wake up to the needs of your fellow man!’

“In the beginning, children would gather around him because nobody had ever spoken like that. And he went on day after day for years and years,” Wiesel said.

Much like the old sage of his story, here Wiesel got quieter and softer as he continued.

“And years later, the children stopped him in the street and said, ‘Poor stranger, you speak and you shout, but don’t you see that nobody listens? And yet you keep going, speaking and shouting. Don’t you see it’s for nothing?’

“The sage said, ‘My dear child, I know it’s for nothing. They don’t listen and will never change. But I go on shouting louder and louder in this village and that village, on this corner and that corner, because ultimately, I don’t want them to change me.’ ”

Just Because....You Will Understand



       Just because the parent of every severely disabled child will understand without the need for any explanation...especially the parent of an post school-age disabled son/daughter!


Saturday, December 3, 2011

64....I AM


       I am not a fan of birthdays, nor most holidays....must be the grinch gene that was passed on from my ancestors and kept replicating itself in my DNA (hope I'm not passing it on to my progeny).  But I guess that turning 64 today must mean something other than I'm old.   I minimally researched the significance of "64" and found the following list of stuff which should make me quite celebratory.  Wish someone would add my "64" to wiki-pedia.  How about it?






Sixty-four is:
                                                      When I'm 64  by the Beatles

Sixty-four is the square of 8, the cube of 4, and the sixth power of 2. It is the smallest number with exactly seven divisors. It is the lowest positive power of two that is adjacent to neither a Mersenne prime nor a Fermat prime. 64 is the sum of Euler's totient function for the first fourteen integers. It is also adodecagonal number and a centered triangular number.
Since it is possible to find sequences of 64 consecutive integers such that each inner member shares a factor with either the first or the last member, 64 is an Erdős–Woods number.
In base 10, no integer added up to its own digits yields 64, hence it is a self number.
64 is a superperfect number - a number such that σ(σ(n))=2n.
64 is the index of Graham's number in the rapidly growing sequence 3,27,7625597484987,....

  • Phil's "64" today....yeah!  One year from Medicare....

Wednesday, November 30, 2011

Choosing a Life or Living a Life? (Sharon Dzialo)



     Does that question sound pedantic?  Here I am again, stealing the blog away from the husband. (Ed. It's really ok!)  He has writer’s block OR he is stuck in chronic sorrow (his new favorite topic) OR he has been working too hard – raking, trimming, hauling and helping clean the blocked septic system.  At any rate, he gives me no static when I decide to write. 
     I went by myself yesterday to see the movie THE WAY with Martin Sheen and Emilio Estevez.  The husband does NOT enjoy sitting in a movie theater   (Ed.  He has PTSD and ADHD and .....can't sit still and focus) and I like not being distracted by his sighs of boredom and discomfort (Ed. like when he keeps checking his cell phone for the time.).  I can completely lose myself in a good movie, as well as a good book – love that feeling.  I have been in a deep funk lately and I was not really looking for distraction or entertainment.  I NEED to find my way out .
     The movie was a gentle drama about a father who travels to St. Jean de Port in France to collect the remains of his son who was killed in the Pyrenees in a storm while walking the Camino de Santiago.  Unfortunately, he and his only son had a cantankerous relationship, neither one able to appreciate the life of the other.  When the father arrives he is given his son’s hiking equipment.  He decides to embark on the pilgrimage to honor his son, spreading his ashes along the way.  The father comes to understand and appreciate  his deceased son’s life.    The Camino de Santiago is an 800 mile trek from the Pyrenees to the Cathedral of Santiago de Compostela in Spain.  People have been making this pilgrimage for a thousand years for religious, spiritual or cultural reasons. 
     I cried many times.  I also laughed.  Some people who view this film may be tempted to embark on their own pilgrimage.  I was not tempted because I recognized the stark reality that I have chosen my own journey and I don’t need to walk those 800 miles.  Ultimately, I will probably walk much farther and it will definitely take much longer than the two or three months most folks need to complete the Camino.  The father discovers the difference between the life we live (when one goes through life blindly unaware of one’s actions and how these actions affect not only ourselves but others) or the life we choose. 
     Some may not view our life with Adam post – accident as a choice but it is.  We choose to care for him at home.  We choose to seek the best possible healing modalities.  We chose to retire early and to live by the ocean .  I don’t need churches or saints.  Nature provides my access to the Divine, to the Source.  We choose to work hard daily, always seeking to improve quality of life for ourselves and Adam.
     Seeing this movie gave me a spark, a validation, a gracious reminder about the richness of a chosen life.

   
N.B. (Ed. are  editorial comments by the blog owner....Phil and so called "the husband")

Thursday, November 24, 2011

Nightmares (by Sharon Dzialo)


    
  My nightmare.  You might be surprised!  It had nothing to do with Adam, his accident, the bumps in his recovery, the fear of losing him.  Nope.  I woke up in a terribly dark place this morning.  My night was filled with images of a long-time friend.  We worked together for years, talked often in that heart-to-heart way, socialized.  Then the accident.  Everything changed and our relationship changed.  She watched as I attempted to stabilize my life with Adam.  We met infrequently and she once told me that she could only spend time with me when she was feeling okay (body, mind, spirit kind of okay).  I bought that story at the time.  And, now to the nightmare.  I was back there, in our old workplace, and I saw her.  I really enjoyed our friendship – we could talk about everything.  This time I could feel a huge smile spreading over my face as I approached her.  She couldn’t see me.  She looked to the left, to the right, and she didn’t see me OR she was ignoring me, acting like she no longer recognized me or couldn’t remember me.  I stood there and watched her greet and hug other people who were in the same space.  It was so painful.  Her partner, another good friend of mine, found me and just sat next to me.  We didn’t need words.  He was always like that – hanging out, sharing the same space.  I miss him too.

         My losses – always triggered by the holidays.  I can’t get away from it, no matter how I challenge myself, my thinking, my choices.  My life is so different now and much of the change is related to what happened to my relationships when I willingly and passionately took on the role of extreme caregiver to our son Adam.  I lost most of my family and friends.  I have heard people say, “well, the phone goes both ways.”  Well, I couldn’t – pure and simple.  I accept that now.  I was not capable of maintaining my old life – work, friends, family.  All of my energy, my life force, was directed at caring for Adam and keeping myself together.  I do wonder how folks could not see this, not understand this.  I needed them to reach out, to come to me, to accept that the playing fields were no longer equal.  Obviously they would only do this if the relationship had been important to them.  Since it didn’t happen I am left wondering if folks just don’t care enough.  It was too easy to let go.  Yes, I know all of the excuses:  Didn’t know what to do.  Didn’t know what to say.  Couldn’t handle the intensity and sadness.  Had their own issues.  I’m not saying that it would have been easy.  I am a different person now with new priorities and needs.  It would have been necessary to get to know my new reality and figure out a way to be present in that space and time.  Very few tried. . .
      
 Now, this sounds like it’s all about me.  Well, I re-visit the nightmare and realize that this is my son’s reality.  Few people see him, know him, love him.  He is invisible.  It’s heart-breaking. But, wait a minute.  I am heart-broken; Adam is not.  I live with the awareness of separation, of loss.  He lives in the moment, laughs in the moment, doesn’t worry about the past or the future.  I have so much to learn from him. 

Thursday, November 17, 2011

Chronic Sorrow....Understanding That Which Evades Understanding


        Chronic sorrow " is a set of pervasive, profound, continuing, and recurring grief responses resulting from a significant loss or absence of oneself (self-loss) or another living person (other loss) to whom there is a deep attachment.  The way in which the loss is perceived determines the existence of chronic sorrow...a painful discrepancy between what is perceived as reality and what continues to be dreamed of.  The loss is ongoing since the source of the loss continues to be present.  The loss is a living loss." p.26

       "While chronic sorrow is conceptualized as being normal and understandable, there are no formal and customary social supports and expectations, rituals or recognitions of the catastrophic loss, since the person who is the source of the loss continues to live.  Adaptations are usually drastic and disorienting.  Simultaneously and absurdly, the person who is the source of the sorrow may at times be socially unrecognized, as if he or she does not exist.  If there is no existence, there is no loss; therefore  the grief is unacknowledged and unaddressed by society." p. 29

       A powerhouse book for every parent of a disabled child or adult child.

Monday, November 14, 2011

Ozzie the Duck: Murdered in Westfield, MA




Ozzie, the duck

       I have recently read numerous posts by fellow bloggers about the invisibility of the disabled and the continued stigmatization of people with handicaps.  I wondered why. Various theories and models are spun in a genuine search for understanding and a thirst to educate the general populace.  Today, I was struck by a bolt of something.  Ozzie, the Westfield Park resident Muscovy duck,  was murdered by some teen morons.
       Don't get me wrong!  I think that this was a totally detestable action which cannot be explained away by youth.  These teens were neither endowed with intelligence, nor compassion, nor any other positive human quality.  I believe they should be apprehended as quickly as possible and castrated so that their mutated genetic material cannot be passed on to anyone with whom they may unfortunately copulate and ultimately inseminate.  Just cut their balls off!
       Now do get me right!  This story is three days old.  It was in the Western Massachusetts papers, local and statewide television stations and New England Regional Newspapers (Boston Globe).  Police are out in force looking to apprehend four idiot teens and now there is a reward being offered for information. People are aghast!  The media blitz is ceaseless. Now people have established an Ozzie Fund.
       The park ranger told us about how Ozzie took up residence three years ago and never migrated to Mexico, like he is supposed to.  Everyone fed the fella!  The teens are accused of venting "blood lust"; "taking advantage of the trust of an innocent animal"; and,  "oh, my god, the poor baby!".  I know that a Facebook page has been created for Ozzie to get the duck justice.  And, on and on, new television shows, new articles in the media and wailing and crying continue daily.

       Then I thought about some of the outrageous crimes directed at the disabled that I have both written about in this blog and continue to read about.  Usually, one page hidden away, usually no follow-up, usually no outcry for justice!  What the fuck!  Something is wrong with the media and something is wrong with people in general.



       So why is the world in an outrage about a duck and not repeated instances of abuse of the disabled?  The disabled are also innocent, trusting, responsive to kindness and susceptible to abuse by strangers.  I am plagued by the indifference of the media and the general populace.  I am plagued by this dis-ease of invisibility.  I am plagued by the lack of rational explanation for this pervasive injustice.

        This post is a partial purge, interrupted by a lack of explanation or model.  I am hoping in the follow-up post to examine some principles of evolutionary psychology in an attempt to explain the unforgivable...the invisibility of the disabled and the indifference of the general populace.

Monday, November 7, 2011

Funny Is As Funny Does....(Adult Content over 6 years old only)

       Everyone (except me) likes fall in New England.  Hurricane Irene burnt the leaves, so no color but brown.  Dark when you wake up, dark when you go to bed.  My koi are hibernating so you can't watch them swim around.  Flowers and garden are dead.  And it's cold early...I could go on, but why be shitty.
       So to make my self happy, I am posting my favorite FB shares: they never fail to bring a smile.  Hope one of them makes your day!  If you live where the sun is shining and it's warm and you don't have a disabled kid and a dog who "honks" at 4:00 am, you don't need this post.  Others maybe helped.....














I can't take credit for any of these creations, but then I don't know who to attribute them to.......




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