Adam's Back, Eggs and Super-Soft Balls...

       The biomechanical changes in the body of a spastic young man (Adam, in this case) resulting from many hours of daily ABR (Advanced Biomechanical Rehabilitation) are never simply linear and even.  Changes happen from the top (head) and cascade throughout the body.  At times, as parts of the myofascial membranes and supported structures normalize, other areas demonstrate their inherent weakness from the original collapse caused by the brain insult, either acquired or present from birth.  As we know, underneath all spasticity is weakness.  The "getting better" part of the process is neither smooth nor linear.  Transitions arise and changes in ABR protocols are necessitated.  ABR produces releases in the myofascial layers which reveal further weakness which must be strengthened.

Our present ABR project: differentiation of
sacrum and illiacs; mobility in sacroilliac
triangle to prevent pelvic tilt when
seating.

      We have now resolved the issues concerning excessive mucous production because of releases in the thorax and increased lung function. And we have fairly effectively removed restrictions in Adam's vertebral column through the mid thoracic area.  Prior to ABR his shoulder blades were rotated high into the clavicular areas and there was little differentiation between upper thoracic and cervical vertebrae.  These areas have greatly improved and alligned.  On the heels of this positive progress, we are now confronted with Adam's inability to sit in his chair for periods of more than an hour without discomfort.  Now, we need to confront the rigidity and lack of differentiation of the sacrum, illiacs and lower veterbral column.  This rigidity causes pain when loads on the column come from below and cause the pelvis to tilt.  Now begins the process of ungluing these structures from each other and strengthening the lower end of the vertebral column.

The EGG...actually we use the orange very soft
version by eggserciser and the red soft by theraband.

         After a video consult with Leonid, we are using the new "egg" rolling technique along the illiacs and the sacrum while Adam is prone so as to release the rigidity which produces the pelvic tilt when seated.  Also, we are using the egg to roll from along the hip bone to the pubic bone to strengthen the lower abdominal wall now that previous exercises have produced needed space.  Parents need to be trained to use this new tool and, most importantly, the necessary targets will be prescribed for them based on each child's physical challenges.

Since ABR, the rib cage evened out, abdomen strengthened
and expanded, shoulders moved to proper position and intercostal
spaces greatly expanded.

         After several weeks of the new protocols, we are noticing more changes in the sacro-illiac triangle and a greater division between the lower rib cage and pelvis on the right side of his body.  All good things!   Our belief in the success of ABR maintains our determination and we do the techniques daily for 3-5 hours and use the machine in the evenings for about 10 hours a night.  While Adam's body is not a pretty sight, it is getting prettier and more comfortable.

Note the finger pointing to the increased division between the lower portion of the rib cage and pelvic area.  For many years these structures overlapped and ABR has allowed for differentiation and production of space which will allow the hip bone to move into its rightful space in the abdominal wall.  No, by the way, Adam doesn't have two navels.  The upper one is the old g-tube stoma which held the mic-key that Drs. Phil and Sharon removed and got the old boy eating via mouth.


Again, ABR is a singularly effective therapy to normalize structures which collapsed as a result of brain injury...it's a parent intensive long haul, but changes develop along a predictable, yet non-linear, uneven path.  Nothing is simple in the world of severe disability.

Prior to ABR, you could not differentiate scapula nor
any of the cervical or thoracic vertebrae...now they are visible and
aligned.  Next project:  mid thoracic to sacrum straightening and
strengthening.  We're getting there!

The Singing Penis....

      This blog generally is full of rants, hope, Adam updates, tributes to mom and dad and periodical articles about pond scum.  Often, I write about ABR (Advanced Biomechanical Rehabilitation) and the resculpting of Adam's body and new devices that we employ to keep him healthy.  So much of this blog is meant to be educational and science based, so I need to continue in that thread...the pursuit of true, raw science.  We have so much to learn from nature.

The Water Boatman

     So I thought that I would share with you new information from the world of research and science. This link will take you to a CBS news article about the "singing penis."  I hope the knowledge allows for an expansion of your frontiers of thought.  You never know when you will need this information or when you want to share it with someone.  When I shared this with my wife, Sharon, she said that she believed I lost my mind...things like that happen.

     Or, if your seek a more authoritative source, BBC nature news.

       Life is learning, more and more each day!

Life is Short and assorted other Bullshit"isms"

       Life caring for a severely disabled son is not a cake walk, nor a stroll in the park.  Neither is it analogous to caring for an old dog, a rebellious normal teenager, or a demented, elderly parent.  Why might you ask?  Well, old dogs are supposed to be incontinent, regular kids are often all-consuming pains in the ass, and the old folks are supposed to act like old folks.  A twenty five year old who is non-verbal and non-ambulatory and a lot of other "non" stuff falls into a totally different category which defies typical definition.
       People who should be sociologically close often avoid all attempts to be useful or helpful.  They view you as strong, and capable and able to handle any emergency, be it a long term or short term emergency.  Their view is skewed in this inept direction because it provides a convenient rationale for never stepping up to the plate.  The one thing that these "people who should be sociologically close"  have and readily offer is a litany of platitudes and meaningless expressions which serve only to piss ya the f..k off.  Here are some of big offenders:
       Pray for miracles & Ask and you shall receive:  Yeah, right!  First, you have to believe in a personal god and I don't.  Second, you have to believe in miracles, and I don't.  Did you ever hear about the miracle where god re-grew an arm that was amputated above the elbow?  Or how about the eye that was poked out by a stick and re-grew?  And the asking/receiving thing?  I've been asking to hit the big lottery for years even promising to give money away...haven't received anything yet.  Is 13 years of asking not long enough?
       I don't know how you do it, they'd have to put me in a rubber room:  You do it because you love your son and because it's the right thing to do.  You sociologically close people could learn to do it for a few days, so that we could get away without the kid for a weekend.  We could teach you, you could learn, it's not rocket science.  How's this: Get Over It! Stop being a marshmallow 'fraidy cat and step up, we deserve  a weekend off every thirteen years.  Don't we, sociologically related people?

       Well, it could be a lot worse!:  You're right on this score.  The kid could be more crooked than he is, he could never smile, he could seize and vomit all day!  So right, it could be worse, but still it's pretty tough for parents in their 60's.  We could have had to make a decision about pulling a plug, but didn't have to, although some people have said it would have been better if he just checked out.  A preponderance of idiots on a small planet?  This paper if just for you. (on the right!)

       Calm down, Time heals all wounds, Life is short!  The trinity of phrases which are often offered when people's blatant indifference toward you and your son rankles your soul.  You either confront them or walk away from the negative energy. Everyone wants everything to be mellow and superficial.  Well, I have not the time for mellow, superficial folk.  I have no time to gossip or spread rumors about sociologically bonded people.  I will not calm down in the face of indifference; time will not heal the wounds of indifference; and, life is not short...it is endless.   So be a part of the journey and move forward with us or get the hell out of the way.  Help, be positive and be supportive.  If you can't do all three, stay away.
       God helps those who help themselves!    Not true....
       You need to get more help!  So right, my sociologically bonded unit...so get off your ass, come down for a week and take care of us so we can take better and more relaxed care of Adam. You have no idea about finding, hiring, training, trusting someone to care for a kid who can't move nor speak.  Applicants are often dirty, stupid and chronically unemployed and chemically dependent.  It's easier to get a dog-sitter, but not by much.  We have gone through more care-givers than you have moles.
       I know how you feel! I know what it's like!  Unless you are part of that .05% of the population who walks in "our shoes" or "moccasins" you do not have a clue nor will you ever.  I would, however, like to give you a brief experience.  Please ask.....
   

       Blood is thicker than water! Blood means family and relatives, I guess.  Well, blood coagulates, blood thins, blood clots, clots cause strokes, blood gets infected, blood gets sucked by vampires (real or psychic).....water, on the other hand just gently  flows....I'll take a long, cool drink of water, thanks.
       You should join a support group!  Ok, will you mind my son while I am commiserating with other parents of severely disabled kids?

        Every cloud has a silver lining! Look on the bright side! Yes, I have become a deeply spiritual, god-fearing, humble, loving, compassionate human being because of the depth of my experience.  Actually, my silver lining is the development of a keen bullshit detector with regards to the hearts of others, especially my sociological unit.
        Get over it! Get on with you life!  Up yours, and I wouldn't trade my life for anyone's. I am moving on with my life daily.  I could just use a periodic reprieve.  We all need a break from ourselves.
         I'm sure that parents of severely disabled kids have faced these and many other platitudes as excuses for avoidance of involvement with people like us.  It's probably better to say nothing that to say something which triggers and irritates.  So just to be on the up and up, this is a partial list.  You can help me by adding more.

The following are my rebuttals to those who have incensed me with trivial statements about life:

As a dog returneth to his vomit, so a fool returneth to his folly.
 Bible - Proverbs 26:11

Every ass loves to hear himself bray.
 Proverb of Unknown Origin

    

     

Pond Scum...updated AUGUST 31, 2011

LATEST BLOG UPDATE ON BARRANCO, MEC, MSEC and ITS LEADERSHIP, CLICK HERE!

Dr. John Barranco, Ed.D

UPDATE: August 31, 2011    Here is another update.  The 10 million dollar alleged fraud could actually be as high as 37 million.  Let's trust Sped Collaboratives and Superintendents to care for the most vulnerable school aged populations and not line their pockets.  Anxiously waiting for indictments!!!  Are school systems places where Sped students are valued and cared for or are they secret bank accounts for school superintendents!  The filth in Massachusetts makes me want to vomit!

UPDATE: AUGUST 18, 2011 Here is another update where pond scum becomes slime.  A big conflict of interest between John Barranco, MEC and a convicted lobbyist.  They are, of course, both in hiding.

UPDATE: AUGUST 10, 2011 
     HERE is a newer update from the state auditor...up to $30 million of bogus charges.   Booze, lavish parties, hotels, etc.  at the expense of the most vulnerable people in society.  Every Superintendent and Administrator on the Board of Directors and higher up employee should be FIRED and JAILED.  They should have known as it was their job. The high life at the expense of disabled kids...no wonder everyone is hiding and not speaking.

UPDATE:  AUGUST 9, 2011

     HERE is a copy of the grand jury jury subpoena for payroll records for our superintendent friends in the Merrimack Education Center scandal....see who is being looked at.  These people were supposed to be the guardians of tne most needs....as GK Chesterton said: "...the young demand justice, the rest of us beg for mercy.:

     HERE is the news report of the federal district court investigation of pond scum...betrayers of the children with special needs.  Many more chips will fall!

       Special needs students are the most vulnerable population in schools and in society.  They appear imperfect in their physical appearance, in their motor skills, in their cognition, in their ability to get voted "most likely to succeed" .  They compete for scant public dollars with Advanced Placement programs, meterology courses and school musical productions.  In the educational scheme of things, special needs programs should be fully funded first and then regular education students should receive a fair share.  It's not the way things happen because special populations have NO voice.  Parents and students are so beaten down by life and non-responsive agencies that they have little fight to give them VOICE.

      Then, along comes a piece of dog-shit like John Barranco, the former head of the Merrimack Education Center and the Merrimack Special Needs Collaborative in Northeastern Massachusetts.  He is accused (good word) of fleecing money from special education funds to the tune of over $10 million dollars
over the past years.  That would buy a hell of a lot of diapers and g-tube sets.

      Some years he received a half-million in salary and bonuses, some years he was a no show, some years he hired his live in girlfriend as a director for one hundred grand , some years he hired his superintendent buddies on his board to six figure positions.  Some years he fixed up his vacation homes, some years he paid for days at the Kentucky Derby with cigars, many years he hosted lavish parties and paid for all his gasoline with the center's monies.  Some years, he bought his daughter a mahogany table for a present.  Oh yeah, and there was a robotic swimming pool cleaner.  He also hired Richard McDonough as a no-show lobbyist/PR person for $80,000.  Oh, by the way, McDonough was just convicted of theft of honest services, etc with the former speaker of the Massachusetts House (Sal DiMasi) a week or so ago for pushing a software contract with Cognos and getting a kickback.  Guess which software the Collaborative and Center use.

       Yes, there is outrage in Massachusetts from the Governor, the Attorney General, the Inspector General, the State Auditor and every other hack in government.  Who was minding the store and providing oversight for the past ten years?  And what about the kids?  With the fleecing of 10 million, what needed services did handicapped kids not receive?  What services were not provided in schools as local districts paid an additional 10 million for nothing....And, people had to know.  Boards of Directors?  Accountants?  Bookkeepers?  Directors of Programs?  They are all equally responsible and equally guilty.  Frankly they should all be fired and all jailed.  Every penny of their assets should be liquidated and given to programs for kids with special needs.  Their indifference is reprehensible.

      So my humble opinion leads me to believe that Dr. Barranco is a piece of shit which needs to be rapidly flushed because the stench pervades the surroundings.  Frankly, I wish that his "privates" would drop into my VitaMix.  Of course, the Center has hired a PR firm to mitigate the blow-out...things, they say in the  Inspector General's report are inaccurate (but, they aren't specific).  Ok, they weren't real Cuban cigars and the amount wasn't 10 million, it was 9.99 million.  I hope Dr. John rots.
     Oh, here's an update: three local superintendents who help steer the money to the Merrimack Ed Center that olde Dr. John headed were rewarded with lucrative jobs there upon retirement.
      "The superintendents who approved the money transfers -- former Billerica Superintendent Robert Calabrese, former Tyngsboro Superintendent David Hawkins and former North Middlesex Regional School Superintendent James McCormick -- were rewarded with six-figure jobs at MEC and extravagant bonuses, according to state Inspector General Gregory W. Sullivan.

"The superintendents taking part in his scheme betrayed the trust of parents, students and taxpayers," Sullivan said in an emailed statement to the Lowell Sun."

Read more:http://www.lowellsun.com/ci_18336940#ixzz1QIEl8xPI

And more filth rises to the surface;

 
And, more detail of the filth within:  who knew and when did  they know?  why did no one report the abuse?

Article from Massachusetts Non-Profits

Perhaps we should start an ex-education superintendents WALL OF SHAME.

      

All facts and data are from Boston Globe, Boston Herald, NECN and the Lowell Sun (links are in body of blog text); opinions are mine!

Adam's Sox...

A pic for all you Sox fans!

       In 1998, just weeks before Adam's near-drowning accident, he attended his first Boston Red Sox Game with his Little League All-Star Team.  When he returned that evening, he told us it was the best day of his life.  So, thirteen years later, we decided to return to Fenway to recreate the experience for him and jog the old memory banks.  This certainly was a great day.  This certainly was a traumatic day. We have recovered.
      We were prepared to be in Boston for a 1:00 pm game.  Of course, at the last minute the Bruins won the Stanley Cup (like I care, but many of my Canadian friends probably are mortally wounded) and scheduled their victory parade for the same day and same time as the game (duh!). The Sox, not thinking of our predicament at all, moved the game until 7:10.  Mind you, Adam is usually in bed by 8:30.
       So we went...Adam in the van on an inflatable bed to avoid prolonged sitting in the damned wheelchair. Almost fell off the bed several times on the way (Mom was practically sitting on him to keep him secure), Dad couldn't find the parking lot that we had reserved a space for the van (at only a 60.00 fee), and daughter was giving incoherent direction by cell to Dad who was flipping out.  Made it there just on time.

Adam, bearer of the borrowed rings.

   

         Our host was super gracious.  Carl Beane, the Red Sox announcer since 2003, met us at the players' gate and gave Adam his two World Championship rings from 2004 and 2007 to wear.  Pictures of course, but we had to give the rings back.
         We were given a tour of Fenway Park including all the back alleys and the green monster (the wall for  all you non-Sox fans).  Viewed years of memorabilia and  I suppose a lot of people would find this cool.  I would rather have a beer!

Adam, Carl Beane (our uber-gracious host) on the field.

Aimee, feigning an interest in the wall of heroes.

       Then it was on to the old autograph frenzy.  Thank god, Ken Lynes was with us.  Also, Joanne Stafford worked hard behind the scenes to make this all happen for Adam.  Ken had no problem calling some of those players over to sign balls and cards for Adam.  This is not an easy trick during batting practice, but he was not to be over-looked and kept pointing out the kid in wheelchair.  That tactic always works.  I'll have to remember this strategy for the future.

Ken badgering Adrian Gonzalez for autographs for Adam as me and the kid watched in awe.

Ken cajoling Adrian Gonzalez to sign THREE cards and a ball for Adam.
I gotta learn from this guy!

       Having started the tour at 4:00 and the game wasn't till 7:00, we had time to kill and sweat in the heat.  Adam sweated despite all our efforts to hydrate and keep him cool.  Since the accident, his temperature gauge has never served him well.  He's cold when it's hot, hot when it's cold....aarhh!

Made Adam a tent to keep him out of the sun....didn't work well, in fact, not at all.

       So by 6:00, the kid was moaning like something was wrong.  He was soaked with sweat and probably other stuff and needed a change of clothes.  So we're sitting at field level in pricey seats and asked an usher or security person (really an idiot) which bathroom or utility room we could use to change him.  Uh?  "Do you both have to been in the bathroom with him?"  Yes, dumbass, try to change a spastic 25 year old who is in a wheelchair alone.  Well, he tells me, there are handicapped stalls in the women's room, but you can't go in there.  Close your eyes, asshole, and we won't tell if you don't.  He walked away and the three of us used the women's room to some uncool looks.  He said, "I didn't see anything!"  Great!
       We lasted until the 5th inning when the boy started to moan incessantly with mournful looks at Mom ... too much chair time.  You know, non-verbal kids can moan and whine quite articulately. The high point was that his most favorite player was on the field two feet away from him the whole game.  It's not like Adam was interested in the game, but he didn't take his eyes off this player for 5 innings and the player fully engaged him. This was the high point of his day.

Our hero, the Red Sox bat girl chatting with the boy!

       So we got Adam back in the van and laid him out on his air mattress...relief for all of us.  The moaning stopped and we crossed the bridge back to our beloved island at 10:30.  I'm not leaving the Cape again...ever.

Family time in an empty Fenway Park....farewell!

Photography: through the kind assistance of Tony Iannotti (except the more crappy pictures taken  by me)

The ball......