Adam Dzialo

Adam Dzialo
Our son, Adam Dzialo, age 30

Thursday, September 29, 2011

Montreal ABR: Doing What We Are Supposed To Do.....

Adam and Nicholas, Annie Lachaud's (ABR Canada Director) son
Buddies since the early days of ABR
September 29, 2011

Fehim Mednic, our ABR trainer, demonstrating the lateral neck exercise on a
sleeping Adam!

Saturday, September 24, 2011

Disability Identity: Good Intentions Gone Awry?

   
     There's much buzz in blogger-dom and other literary circles surrounding the notion of a disability identity.  Disability, whether mild or severe, is a simple fact of human existence.  Identity is a social, psychological, anthropological or other "oligical" construct.  Identity is a construct used to explain something which is unreal and fundamentally unexplainable, in other words, an anchor term of academicians and scholars.

       I am a man! I am gay! I am black or Latina!  I am a victim of abuse! I am a feminist! I am an alien! I am a  born-again Christian!  I am Jewish! I am a witch! I am a polygamist!  I am a dork!  I am disabled! I am fat and proud!  And what do these "I am" statements convey about identity (if identity is a true attempt to define the Self)...not much.  They classify, they categorize, they define which box to file the form into.  Fundamentally, group identities de-humanize and de-personalize.  A person is not what they possess, what group they belong to or what they believe. We should  not be a culture of tribal nations.  A person is not their sex or sexual orientation, their religion, their race, their nationality, their body type, their ability or their disability.

       I am the father of a quite disabled 25 year old son.  He can't speak, he has no effective way to communicate (despite all our efforts), he cannot intentionally move a muscle other than a head or an eye, he has to be fed and toileted...he, however, can smile at every face that approaches him.  He has physical  limitations of a pretty profound magnitude.  I speak for him....he does not question his identity, he does not categorize himself, he does not proudly wear the label of a word.  He is.......and he is happy!  What does this tell us?

       Oppression, "isms", prejudice, discrimination are the filth of the world which are pervasive illnesses borne of a perverted need for power and control.  There are few groups (I can't think of any quite yet) who are not disparaged by someone.  Power is displayed when you are better than someone, when you adopt a label so that you can belong to a group and the "herd" has power against the oppressor.  It doesn't matter which group, just be a member of a group.

 
      Perhaps the option which my son communicates to me is that he is ....  simply is, a human being.  As the radical Jesuit, Teilhard de Chardin,  repeatedly said, "We are all spiritual beings having a human experience."   Members of the human community are owed respect, kindness, human interaction, service, love and host of other things.  They are deserving of these because they are members of the whole, a cosmic, unrelenting interconnectedness. Some of us are here to experience masculinity or femininity, others being black, brown, yellow or white, others to experience Christianity or radical Islam, others abuse or being abusive,  others ability or total disability ....we are all experiencing so that we learn about the multifaceted aspects of our self, some would say soul.  Our experience is not limited to here and now, it will occur over and over...till we learn and can share in the larger evolution of consciousness.  Who is my son, Adam....I am!  Who am I...I am.  We have different experiences, but we answer the same question with the same answer.  I am....

      We refuse to be defined by a moment in time, by a particular life time, by any condition or life event in which we presently participate...  Although a too frequent an  occurrence, no one can or should attempt define anyone.  Everyone has a right to define themselves, but should they?  I have dignity because I am; I have pride because I am; I will not be dismissed because I am; I will not allow myself to be oppressed, because I am.  I am...makes me a meaningful part of every conceivable group, make me deserving of love and respect, makes me who I am!  While this dream may not reflect extant reality, my knowing that "I am" is all that matters in the very end.

POSTSCRIPT: Eric Fischer, whose blog is I am a broken man/You can't break me has developed a post which reviewed several bloggers posts on the concept of disability and identity.  His analysis and synthesis of ideas and his additional insights certainly bear a serious read.  Please click the above link to the blog post, you won't regret it!

Thursday, September 22, 2011

ABR Montreal...Get Ready For Us!!! September 27-30, 2011

       The past six months. the time elapsed since we were last in Montreal, has been quite exciting and replete with structural transitions.  We are now placing less emphasis on the traditional  3Q (quasi-static, quasi-spherical, quasi-isotropic) technique. more on the super soft ball rolling and egg-rolling techniques.  The ultimate goal is, of course. normalization of structure which precedes mobility and function.
       We began ABR evaluations and training in 2003 and we re-affirm our commitment to this approach on a daily basis.  Research being conducted by medical bio-mechanical engineers is lending solid scientific credence to this approach to re-building the fascia.  Every day, in the scientific community, the fascia is gaining a higher prominence in its role in movement, structure and function.
       Our past six months with ABR and Adam have been nothing short of extra-ordinary.  The upper two thirds of his vertebral column have straightened.  This resulted in some rather dramatic shifts in the pelvic floor and a twist in the sacrum and illiacs.  The coccyx became more pronounced.  It appeared that change was moving downward.
      Change, however, it not without transitional consequences.  For months, Adam couldn't sit in his wheelchair because of the resulting discomfort.  After consulting with Leonid, we began egg rolling along the illiacs, soft ball rolling down the sacrum and egg rolling along the hip bones toward the pubis.  We have noticed a resulting change in alignment of the pelvic floor.  So, now the boy is sitting comfortably and much more serene.
       There are also noted changes in the extraction of the scapula, expansion of spaces between the vertebrae  and the beginning of the elimination of fascial collapse between the rib cage and upper hip.  Lots. of changes, lots of transitions; certainly not a linear progression, but ultimately in a continuing positive direction.
       We have maintained between 3.5 and 5 hours of ABR daily and we have chosen not to take a day off until the comfort issues were resolved.  I think that we are there.
        Our greatest fear was the 8 hour ride to Montreal, but with intense ABR and perhaps a small dose of valium, we will make the return trip.  Given the week that we have chosen we were able to double up training sessions on Wednesday and Thursday next week and compress four days into two.  We are excited to gain more skills, newer exercises and a renewed enthusiasm.
        With all our research, we believe that ABR is bringing about the necessary structural changes in Adam so that he enjoys a healthy, comfortable life more free of the limitations and pains of spasticity and contractures.  It's not a job that we do, it's more of a continuous communication with Adam's body, prodding it to heal in the right direction.  Combining the power of medical bio-mechanics and the power of intention, life does get easier.  Adam does continue to heal even 12 years after his near-drowning.  We are grateful for the inner strength to continue on this path. Rome was not built in day, as the old saying goes.

Sunday, September 18, 2011

Pond Slime...Scum to Slime: Fleecing the Disabled


 

And now for the good new 9/25/2011:  Barranco FIRED!

The long rise and hard fall of John Barranco


He found big money in an unlikely place — a regional agency serving disabled children. And then investigators closed in. 9/18/2011 (The Boston Globe)

John Barranco





        In June, 2011, I posted the story of John Barranco, a former school superintendent in Massachusetts, the director of a special education collaborative and director of a related  non-profit education center who allegedly fleeced school districts and taxpayers for an excess of $10 million dollars. Some published estimates exceed $30 million.

       The allegations dealing with this man and his buddies come at the expense of the most vulnerable population on the face of the earth, disabled children.  Hell is reserved for people who abuse and neglect the disabled children.  Fleecing money from their services is abuse! In the words of G.K. Chesterton"...the young demand justice; the rest of us beg for mercy!"

       The story exposes outrageous salaries and bonuses of $500,000 a year, no show jobs for friends, trips with friends to the Kentucky Derby, expensive cigars, parties for directors where the average person has 8 drinks, gifts to his daughter. Of course, he hired his live-in for an outrageous salary and had his fellow buddy superintendents placed on the boards of both organizations he ran. The allegations are pages long and referenced in my June 2011 blog. The allegations boggle the mind.

      So now he has two vacation homes (Florida and New Hampshire), paid for in cash and he is unresponsive to requests for comments. His cohorts are also silent. The disabled drool, sit in wheelchairs,  and cry for a response.

     "To win the approval of the two agreements, Barranco and Clisbee relied on overlapping boards of directors at the Collaborative and the Center to push them through, Sullivan’s investigation concluded. Because of the overlap, five superintendents voted twice to approve the pacts, once on behalf of the Collaborative and again on behalf of the Center, another conflict of interest.

Moreover, Barranco later awarded three of those board members high-paying jobs at the Center: James McCormick, now the superintendent of schools in Mason, N.H.; Robert Calabrese, who is dead; and David Hawkins, who appears to be still working for the Center.

The MEC Board of Directors
The fourth of the five board members, Richard Moser, attended the Kentucky Derby with Barranco - at the Center’s expense - a year before casting his votes for the two agreements.

None of these individuals returned numerous calls from the Globe." Boston Globe, 9/18/2011

So Barranco is non-communicative. The local Superintendents who sat on the Boards? Well, some were were handsomely rewarded by jobs upon retirement from the public sector. Others were wined and dined in style. Were they simply unknowing dupes? Superintendent of Schools are usually not known for blatant stupidity ( I realize this is a generalization but I personally know several who are really stupid.). Were they collaborators in a scheme which rewarded them handsomely? Did they approve tuition rates and fiscal contracts which screwed the disabled and resulted in needless school spending resulting in higher taxes and staff layoffs. Did they know the effects of the money allegedly fleeced from or  by  them? I am sure that they will be investigated as there are multiple state and federal investigations in progress.  Do these guys even care?  What would be the honorable thing to do?

(1) Let's start with an admission of responsibility and greed?  Quickly followed by an apology!
(2) Let's have an acknowledgement of the pain endured by society's most vulnerable?
(3) Let's return the money and gifts to the disabled and the taxpayers?
(4) Let's apologize to the teachers who were laid off because of your greed?
(5) Let's divulge all the facts in truth:  who knew, who helped, who benefited?

In the long run, repeated silence and denials will only succeed in costing taxpayers more money in investigations, prosecutions, trials and appeals...money already allegedly fleeced from the disabled and citizens. Of course, the Massachusetts Department of Education (DESE) deserves no kudos for its oversight of special education collaboratives, but they will defend their incompetence on budgetary bases. No one is ever responsible, only the vulnerable suffer.  For once, Mr. Barranco and conspirators, simply do the right thing.

All details, subpoenas, audit reports are referenced in my June blog with additions.





Tuesday, September 13, 2011

Life Lessons From A Fish.....My Conversion

Jones Pond, View from our deck..


       We live on a pond.  We have a fairly complex disabled kid to care for.  My goal in life is to give him the best life possible with the most loving care and still maintain a sense of sanity. Reflections on sanity brought me to childhood memories of fishing and the peace and quiet of these experiences.  So what other way to re-capture that place of serenity than to get a boat, pole and sundry types of gear and to fish in the early morn or at dusk on our pond.
        
        I thought too much lately about converting people to embrace the land of disability.  I thought too much about the past blogs: saying the right thing to the right person at the right time with the right words...then perhaps the story about embracing the disabled would resonate.  My goal was to stop thinking and float around and fish.  This was intentionally paced to be far from a mindful experience...all I wanted was to catch fish and throw them back.
       
        Well, I met my proverbial match in the first fish I caught one evening ... a bluegill, a small crap fish.  She/he swallowed my worm as well as my hook and I couldn't free the critter without ripping out its guts.  I just cut the line and threw it back in, well aware it wouldn't survive.  I also put away my pole and gear and swore I would never fish for fun again.  Mind you my reference is to fishing for fun and sport and not fishing for dinner.  The fish talked to me...it was the right fish, at the right time, with the right words,  and in the right place.  My behavior would be altered forever.  I saw myself as a brutal killer.


        Many people who fish for fun claim that fish are incapable of feeling pain, that the hook causes no discomfort.  Of course, when a hook has ripped through a delicate mouth, they trash, struggle and fight...they slowly suffocate out of water.  Their struggle indicates an aversion to pain and a strong will to survive.  I thought of severely disabled people, struggling daily to survive not unlike a fish out of water.


       I learned in a split instant a deep lesson about fragility, about an indomitable spirit to survive, about total dependence on another and on the other's treatment of them.  I learned about pain, about helplessness, about the look of despair.  I learned about struggle, about the need to be free, about the cruel domination of others.  I learned what it's like to be a insensitive bully.  In a moment, a torrent of emotion and a flood of knowing filled ever fiber of my being.  I learned from a fish.  I really feel like a shit and all I can do is to resolve to never do this again.


       The right person or fish, the right word, the right place, the right time...I would hope that this experience is not reserved only for the initiated.  I hope that it is a step to a higher level of consciousness and a higher degree of appreciation for the fragility of life.  In a way, the fish was like jesus...giving up life so that others may live with a higher consciousness.  I hope this isn't sacrilegious, but there are stories about jesus and fish in the book.


       I learned about life from a fish...all you have to do is look and listen!
Right place, right person, right time, right words...behaviors can change.
        










Wednesday, September 7, 2011

Guest Post: Eric Fischer, A Response to Request for "Conversion Stories"

Eric Fischer
       In my last post, I inquired if readers had "conversion stories" that they would be willing to comment upon or share.  My friend, Eric Fischer, shared with me this comment which has taken the form of a guest post.  Eric lives in Haifa, Israel and has been a naturopathic practitioner since 1990, specializing in shiatsu and bio-ergonomics.  He is a totally committed caregiver to his beautiful son, Segev, who was born with Ohtahara Syndrome and a variety of other complicating conditions.  He exemplifies a very unique level of care-giving and demonstrates a deep level of understanding of the meaning of severe and complex disability. 
        Eric blogs at http://iamabrokenmanyoucantbreakme.blogspot.com/ and his posts about his life with Segev merit a serious visit.  Following his blog is an inspiration.  I am honored to share this guest post with all.


        When I was eighteen, long before becoming a therapist, I moved out of my parent’s home, leaving Holland and headed to Canada to study. On the way I stopped in England to visit friends of my parents and they took me out one night to friends of theirs.
        After greetings I was “automatically” escorted upstairs to their son’s room, which I found a bit strange, though he was my age. Apparently he didn’t, or wasn’t expected, to mingle and so there I stood in the entry, looking down at a disheveled 18 year old lying on his bed, watching television. He didn’t say anything, just nodded in my direction while not taking his eyes off of the tv, as though this was just another of many visits from an old chum.
       “You know”, he said after a minute, “I’ve shot a person.”
        Of course I was taken aback and thought firstly that he was simply trying to make an impression, or at least I wanted him to think that I thought that, so I responded with, “that’s quite a story.”
Apparently it worked because then he said, “well, what I mean is that I shot at him, but I didn’t hit anybody.”
That apparently that was all the introduction needed because after that we talked for about half an hour without the subject of the shooting or any other equally astounding act, making its appearance.
        We went downstairs at my suggestion and then came the really interesting part. As I said the young man was apparently not used to ‘mingling’ and it seemed that whatever the topic of discussion he would take an affront to it and react either angrily or dismissively. I intuitively felt that it wasn’t because he was in over his head but rather that he had taken a particular attitude and, with youthful vigor, was going to stick with it. I envisioned him rather like a captain going down with his ship.
       But then I spoke the words. I had never experienced words as having a really life-altering effect myself, though being enamored of words, honing their use, I always believed they could.
       What I said to him, spontaneously and interrupting the increasingly loud debate that he had drawn the other adults into with his abrasive and contradictory stance on each and every subject, was this: “You know”,  I said, “no one here is trying to hurt you.”
       There was silence from all parties until someone said that it was getting late and within five minutes the visit was over and we were on our way out.

       Many years passed. I was talking to that friend of my parents that I had visited in England and she, rather out of context said, “yes, so you see, sometimes people do really change, like John.”  I had no idea who or what she was talking about but upon inquiring she said, “Oh yes! What, you didn’t know? The very next day he went looking for a job, finished his exams, made a life for himself and he said it was all because of what you had said to him that night.”
       I’ve had other experiences like that one and I definitely have been gratified to see the right words at the right time can have such a strong effect.
       How does this relate to Phil’s question about influencing those around us to have an understanding for the needs generated by caring for a severely compromised human being? Because there can be little doubt, as Phil stated, in believing it to be a much simpler task to direct people’s inherent need for a organized system of belief.
       So I believe that we can act as a conduit, like an insulated wire transferring electricity, but, and here is the catch, I believe there has to be electricity to start with. You cannot be a conduit if there is nothing there to transfer.
       Furthermore I feel that it is people’s belief system that is the limiting factor. So does that mean that you must be young, open (and na├»ve?) in order to be subject to influence? If your belief system contains the frame of reference for caring for you fellow man then surely you will rise to the occasion, especially when asked, no?
No, not necessarily. Because the overwhelming majority of alliances in societal behavior exist between elements that share similarities.  Phil’s son Adam is an anomaly. He is frightening. Hell, I would be frightened to take care of him. I’d get over it because I believe we must overcome our fears, must strive beyond what is comfortable and known. 
       I know parents who have made decisions that led to the death of their severely compromised child. Some made the decision because they didn’t possess backgrounds which gave them tools to deal with such a difficult situation. Others did so with the belief that it was best for the child.
       No one is here to judge those decisions, only to try and understand them, in order to learn. From Phil’s point of view, the thought of having help offered is not merely a request for respite, but rather a call to the initiated to open themselves to a tremendous learning experience, even if just for a weekend. A sharing of the journey which, like the classic Greek tales, led a person ultimately to self-realization.
       The initiation though, and now I am particularly addressing Phil, took place a long time ago. Years before Adam was even born, when the experiences of people within hearing distance, formed their belief system. Intelligent people, Phil, caring people. But without the capacity to understand the connection.

So I go about looking, for people who are initiated, and when I find one, then and only then will I ask them because after all, he who has ears shall hear.

Segev Fischer

Sunday, September 4, 2011

looking for CONVERSION STORIES.....

       We bloggers, who have compromised and disabled sons and daughters, write for a variety of reasons: some conscious others unconscious.  We hope to share our stories, our commitments, our joys and our moments of exasperation with whomever will listen.  We hope to inspire newbies to the world of disability and to learn from the loving care-giver pros.  We hope to engender an understanding of the human face behind disability and the indomitable spirit of the disabled.  We confront those who ignore, abuse or are indifferent to our disabled children.  We write to preserve a semblance of sanity for ourselves and self-imposed respite.  Some blog for the pure joy of writing. These are all conscious acts.  There are many other reasons.

   
        We write on another, perhaps less conscious level, and I could be wrong and only represent myself.  I believe that some of us (me) attempt to convert, to educate and evangelize.  We become missionaries not of religion but of disability, a church we worship in.  Too often, however, we find ourselves unsatisfied and we readily acknowledge that we are "preaching to the choir"; evangelizing the saved.  Those who we hope to reach have long passed consciously into the state of being unconscious. They have become unavailable for baptism or initiation.  The question always remains:  is it ever possible to change the heart of those who should deeply care, but do not?  Is it possible to bring friends into the lives of our children?  Is it possible to move a person from a position of being uncomfortable with our children to embracing them wholeHEARTedly?  Selfishly, I wonder why people never offer to care for Adam for a weekend so Sharon and I could get away?  I mean people all know we have never had a vacation without the boy for 13 years!  No pity, just wondering....
   
        I am ready to believe that I could convert masses to Christianity, or Islam, or Judaism, or even Wicca or even atheism more readily than I could convert a person to care about Adam (and the many other Adam's)  and embrace him in a human, loving, concrete way.  I have been unable to convert fear into open arms, to convert staying away to being present, to convert ..... in anyway.  Gentleness, patience, guilt, morality, education, family duty, a willingness to teach and explain have not worked.  Asking directly has never worked.  My batting average is .000 and that would get me thrown off the team.
   
      I would absolutely love to know and read stories where change of attitude and action was really affected. I have heard, at funerals of very compromised children, close family and friends stand and wail and bemoan their lack of presence because there was so much to learn from these kids, a missed opportunity...a tad bit too late.  Regret at the gate of the crematorium is lacking and empty, but perhaps self-satisfying.
   
  If you have affected significant change in a person through words, writing, mentoring or any other medium, please share.  I would love to know how it was done, how it affected you life, how it affected the other person's life.  Comments, guest blogs, anything on this subject are so welcome.  I know that many of us would like to learn about the keys to the kingdom.








Just wonderin', that's all............"They shoot horses, don't they?"

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