ABR . . . Returning Home Again

Leonid Blyum, ABR developer

“The soul of man with all the streams of pure living water seems to dwell in the fascia of his body. When you deal with the fascia, you deal and do business with the branch offices of the brain. That is as under the general corporation law, the same as working with the brain itself, so why not treat it with the same degree of respect?”  (Andrew Taylor Still, Founder of Osteopathy, 1899)

     Within the many layers of myofascia, we find the muscular and  the skeletal systems normally supported.  With anoxic brain injury ,CP, stroke, etc., there is a collapse of these layers of supportive tissue wherein the whole no longer functions with integrity and mobility is lost or compromised  Fundamentally, there develops an inherent weakness which lies underneath the spasticity and contortion of the body.  Given the fact that motor neurons do not regenerate, there are alternative pathways to mobility and function.  The ABR techniques (Advanced Biomechanical Rehabilitation) reach into the visceral core and strengthen this tissue layer  which in turn normalize structure and brings mobility and function.  ABR is scientifically researched and supported through the science of tensegrity study.

Rotation of scapula above collarbone, common evidence of collapse  which is treated by ABR   protocol; Adam had a similar rotation which was resolved.

      ABR is not a quick fix, but a long term therapeutic process carried out by parents as a result of regular evaluation of progress and application of new techniques.  It does work and this is scientifically documented and research continues as progress of clients is measured against the expectations of  the GMFCS scale.  We are starting year 8 of Adam's journey in the ABR process.  It has reinforced good health and strengthened respiration (vital in all cases of brain injury), radically changed his thoracic landscape, clearly improved his scoliosis (by expansion of the volume between vertebrae) and reduced his overall spasticity.  Adam is also among the most compromised and complex of the ABR population.  The progress in the normalization of his structure has been marked, and this is a common reflection of many ABR parents. In the past 8 years, there have been no surgeries, no medications of any kind, no orthotics, no hospitalizations, no emergency visits to the doctor.

      It does take commitment, a minimum of 3 hours of manual application per day and can be supplemented by machine applications while children sleep.  Manual applications target specific areas, machine applications are wider and supportive but do not replace the manual.  Each series of exercises are developed and prescribed by Leonid Blyum, the developer, through either a personal evaluation at the center or by video.  In the initial years, four sessions of training are required either in Montreal or satellites across North and South America.  After a number of years, the evaluations are reduced to bi-annual.

Leonid Blyum, hands on evaluation

       We are looking forward to Montreal March 30 to April 3.  Leonid will skillfully point out changes in Adam's structure, he will prescribe a new set of applications for manual and machine work, and the trainers will develop the materials required and provide training in the specifics.  Above all, we look to Leonid to be our cheerleader as he recognizes a predictable pattern of change...change is predictable.  ABR is a backdoor to mobility and function.  It is based upon pure research and science.  This blog contains many links to ABR theory, application and work of the centers around the world.  ABR makes rehabilitation and progress in the area of brain injury possible.  Parent blogs are replete with stories of significant change.

Fehim Medinic, a trainer, observes Sharon's technique on working to  normalize the pelvic floor.

        So, next week marks year 8 and it marks a re-dedication to our commitment.  After the sojourn in the big city, I'll have an update of changes, improvements, new techniques and pictures galore.  While we have tried almost every available realistic therapy, this is the only one which produces positive structural change which is permanent.  ABR eschews any orthopedic surgery, DAFO's, standers, and poisons (botox, intrathecal baclophen pumps), traditional strategies of physical therapy which are all contra-indicated.  Scoliosis, hip subluxation, contractures are non-surgically and non-invasively treated.  It works, it's tough, it's a long commitment, but it's a true expression of love of your child as he/she moves to a normalized structure.

www.blyum.com

Why? (by Sharon Dzialo)

     Another guest post and so my vacation continues...  I am beginning to like this!  My wife, Sharon, pondered and pondered...here are her reflections.

    I was having a sleepless night (and, no, it wasn’t my son’s fault – he generally sleeps like a hibernating bear) and those thoughts started – you know, the ones that absolutely consume you until you do something with them.  I mentioned a few of them to my husband and he responded, “hmmm, that would make a good blog. . . “ so here I am. 

     I am not a newcomer to being consumed by my thinking.  I spent five long years writing my book, one story at a time.  Each event, each story would stay with me for days, weeks and months until I would finally get it down on paper. 

     My thoughts  last night, this morning?  I am wondering why (and this is a BIG THOUGHT) we do such a terrible job of taking care of our most vulnerable.     To bring it closer to home – when Adam had his accident his life changed dramatically.  Well, why was there not a reverberating impact experienced by all of those connected to him?  For instance, Adam had many friends.  Why did they (actually, they were young, but what about their parents?) not look at the situation and say, “I have a friend who suffered a severe brain injury.  How must I look at my life and change it dramatically so that I can continue to be his friend.” Or, “ I have a grandson, a nephew, a cousin who had an accident.  How must I change my life to include Adam?  His life changed so those connected to him in any way should have felt the impact and opened their life for the necessary change, right?

     No, instead, in our culture, we allow ourselves to deny, distance, judge, ignore, justify.  You know those lines, “I have to get on with my life.”, “I can’t look at him.  It’s too sad.”  “There but for the grace of God go I” (hate that one),  “If that happened to me or to my kid, I couldn’t handle it.” “I have enough going on in my own life.” “I don’t know what to say or do.” (so I do nothing. . . )

     I watch how we are in the world.  We rally for catastrophes – most recently, the horrific earthquake and tsunami in Japan.   We rally in the moment and, as a member of the human race I am proud in those moments.  We are one.  We give away millions, we save animals, we march for Cancer, Heart disease, Aids.  So what happens when the crisis, the need hits closer to home, like in our backyard?  We don’t rally, we don’t march, we walk away.  We can’t remedy the situation with a check, one visit, one song. We would need to make a lifetime commitment.  And we don’t do it. . .     

     Getting back to the original thought – that reverberating impact.  Can you imagine what it would be like if every person who experienced a long term injury or every child who was born with some kind of disability was surrounded by friends, family and community as a matter of course.   It would be the expected behavior.   These friends, family and community members would allow their life to be changed by the event,  they would open their life to include these challenges?  Remember this line, “it takes a community to raise a child”?  Well, it takes a community to care for our disabled AND it’s a long term job.    People could learn to give and to love with no strings attached.  They would then receive the most precious love – uncensored, grateful and pure.   They would know deep purpose and meaning in their life. 

Why?  Any thoughts?     

Guest Post: Comments on "Crimes Against Humanity" Blog Post

       An old (literally and figuratively) friend of mine, Richard Ruel, posted a comment on my last blog , "Crimes Against Humanity" which was a response to a New York Times article about abuse in group homes for the disabled and the inaction of officials.  Google comments rejected the comment because of length, so why not turn it into a guest post?   Richard is as nursing instructor at UMASS in Boston and well as a clinical investigator of the Department of Mental Health, one of the good guys.  I thank you, Richard, for these comments and for sharing them with all.

Richard Ruel

      I investigate abuse/neglect of persons with disabilities for a living, and I was pleased with myself that I was not too jaded (after 17 years working in the field) to be absolutely and totally disgusted and sickened by the inhumane treatment of the developmentally challenged in state run residences as reported in the NYT article. In fact, I could not get through it the first time around, and the day that I am not totally repulsed by these horrible accounts is the day that I quit my state job. I would love to assure Phil and his following that nothing approaching the magnitude of the mistreatment of human beings as reported by NYT occurs in our beloved state of Ma., but I can at least say that our state officials in charge of human services take abuse/neglect of disabled persons, children, and the elderly very seriously. The least I can do is to inform residents of Massachusetts who may be unaware of certain public services available to them how to access a number of agencies designed to help Ma citizens to recognize, report and respond to abuse. First a few comments about Phil’s blog:

 As far as unions go, they do not usually impede the investigations process, which is where I run into them. Workers, even those not accused of anything, e.g. witnesses get nervous with the process and might have a union rep or another adult i.e. supervisor or attorney present with them during interviews with the investigator to assure due process, and no one has a problem with that. In fact, it is a clearly stated right that they have access to representation. Investigators are trained to be objective and professional, and we don’t conduct kangaroo courts where alleged abusers are presumed guilty. However, I have found that unions can make it extraordinarily difficult for management to terminate especially bad employees at times. Also, bad hiring practices by management contribute to the problem by hiring some of the bad apples in the first place. Once hired, union reps have to do their job and represent any and all of their members.

Such emphasis on the rights of workers! How about the rights of those under their charge, the most vulnerable in our society? First of all, there is no substitute for an advocate, be it a family member, appointed guardian, etc. Those with the most vigilant and vocal advocates are less likely to be victimized by way of abuse and/or neglect. Also, ongoing training of workers is vitally important but often overlooked due to time and financial constraints. Every facility and community residence is supposed to have a human rights officer. Sometimes the human rights officers who are supposed to represent the disabled/alleged victims belong to a union, the same one as the alleged abuser, and we may have a conflict of interest or at the very least, the appearance thereof. And for my final comment, I have this alert for you! Be forewarned that abusers and exploiters can circulate through the system and end up working with a different population. For example, someone working with the developmentally challenged can resurface working with the elderly and exploit them financially, an easy target for wolves in sheep’s clothing because this demographic can be so very trusting and desperate for any kind of assistance. 

So what can we do to protect out loved ones from abuse and neglect? In Massachusetts, to report suspected abuse and neglect of disabled persons between the ages of 18-59, you should contact the Disabled Persons Protection Commission (DPPC) at their 24 hour hotline 1-800-426-9009. As Phil pointed out, some of the abuse in NY State was criminal. Please be advised that a member of the State Police Detective Unit (SPDU) assigned to the DPPC reviews all reports of suspected abuse/neglect made to the DPPC to determine whether a crime may have occurred. Civil investigators assigned to cases can request the SPDU to rescreen the complaint when new information/evidence gathered during the investigation suggests criminal activity.

To report suspected abuse/neglect of persons under 18, you should contact the Department of Children and Families at their 24 hours hotline 1-800-792-5200. To report abuse of elderly persons (60 and over), call the 24/7 Ma. Elder Abuse Hotline 1-800-922-2275. Protective services, including counseling, legal services, home health, transportation, and safety plans, are available. Protective services are also provided by the DPPC and DCF. Should the abuse occur in a nursing home, you should contact the Ma. Department of Public Health. (DPH). Reporters of potential abuse/neglect are protected by law. There are also laws to protect reporters against retaliation from alleged abusers, employers, family members, etc. Some of you, by virtue of your profession (as a nurse, I know I am), may be mandated reporters, and you are required by law to make reports of suspected abuse. All of the above agencies have websites that can easily be googled, and once there, you will find details of their services and information regarding statutory and jurisdiction criteria with regard to abuse/neglect.  

Crimes Against Humanity ... "I don't luv NY!!"

      I am a voracious reader.  I am the parent of a severely disabled child.  I would never, ever allow him to be cared for in a state-operated facility.  While I am aware that neglect and a lack of care is evident in a multitude of settings which provide care for the disabled, none rival the recent report in the NY Times concerning the abject physical and sexual abuse of the fragile.  You cannot read this report based upon a year long study without feeling nauseous and vomiting.  Shame on the state of  New York!

      Forty years after New York shuttered it's warehouses for the developmentally disabled, small group residences emerged to serve people with Down Syndrome, Cerebral Palsy and Autism.  New York created these homes with scant oversight and virtually no accountability for employees who perpetrated indescribable crimes.

      The New York Times investigated these placements over the past year and found widespread and unaddressed issues (crimes?) in many of the 2,000 group homes.  There were 100's of cases of clients who were sexually abused, beaten and taunted because of their disability.  In many of the cases, employees (those trusted with the care of the most fragile people on earth) who committed these heinous offenses were transferred, rarely terminated.

       In 2009, there were 13,000 documented allegations of abuse in state operated and licensed group homes.  A mere 5% of those allegations were referred to law enforcement.

       In a review of 399 disciplinary cases involving 233 workers who were accused of 1 of 7 serious offenses, the state was only successful in terminating 30 workers.  Most offenders received fines, short suspensions or loss of vacation time.  The reason: unionism.

       The state of  New York has no educational requirements for employees of groups homes for the disabled.  Even some employees with criminal backgrounds were not disqualified from employment.

       There is much blame to be spread.  A lack of regulation and oversight by the State and a lack of adequate funding are probably contributing factors.  Employment policies which allow people to be hired who shouldn't even be walking our streets are absent.  First and foremost in the line of blame are unions who represent these employees.  Any union which defends a person's employment status when they are accused of abuse of a disabled person is anti-American, anti-labor, anti-humanity.  While I reluctantly respect the rights of unions to bargain for wages, hours and a limited number of conditions of employment, I know that unions defend (almost to at the death) the right an an employee to keep their job without consequences.  I have seen it happen regularly in education where I was a high school principal for 30 years.  I see it more clearly in the New York Times report where unions protected human garbage from loss of employment.

        The very actionable offenses against the disabled are tolerated and defended because of the inability of the disabled to speak for themselves.  The abuse and its defense is not a minor issue, it is a high crime against humanity.  I have never really believed in capital punishment, but today I do!  There is no place in a civilized society for any person who would abuse in any manner a disabled person.  If I believed in a god who would judge and punish, I may feel a long-distance sense of relief in cosmic justice.  Since I don't believe, it must be incumbent upon humanity to dispense justice on behalf of the disabled.  That justice must extend to those who created this system, to those who have abused within the system and to those who protect the abusers and allow them to re-abuse.  Yes, there is a place in our society for a public hanging in a very public square.

        You can read the entire five page report at the following link, only if you have a very strong stomach or access to a bottle of tranquillizers:  http://www.nytimes.com/2011/03/13/nyregion/13homes.html?_r=1

In The Land of Stupidity...The Village Idiot is on the Loose

       After all the blogging stories that we have read and posted about the continuum of discrimination against people with disabilities which range from simple invisibility to blatant indifference, I had assumed that we had heard and experienced it all.  Well, that is not until you enter the land of stupidity and evil which can be found festering in the idyllic hills of New Hampshire in the good olde USofA.

Martin Harty, not my grandfather

       A 91 or 92 year old state representative (depending on which paper you read), Republican Martin Harty of Barrington, N.H. told Sharon Omand, a manager of a community mental health program, that "the world is too populated" and that there are "too many defective people."  When asked what he meant, she said Harty clarified, "You know the mentally ill, the retarded, people with physical disabilities and drug addictions --the defective people society would be better off without."
       The old fart went on to say, "The world population has gotten to big and the world is being inherited by too many defective people."  When asked what we should do with them, Harty said, "I believe if we had a Siberia we should send them to this and they would all freeze and die and we would be rid of them."
       While New Hampshire House Speaker William O'Brien stated that he didn't endorse Harty's comments about defective people, he does respect the representative's "longstanding commitment to protect the values we cherish." (Concord Monitor, March 11, front page)
       Harty then said, "I was kidding with her and it kind of got away from me.  It was a girl that wanted more money for crazy people, the people ... a good percentage of the homeless are mentally disturbed.  I said maybe they can rent a spot in Siberia off of Russia."  The Republican State Committee quickly disavowed Harty's comments, but noted that "We respect Mr. Harty's service to our country."
        To simply say this man (and I use the word loosely) is a few cans short of six-pack, or that the the light is on and nobody is  home, would be very mild understatements.  To say that his comments betray the humanity of people would be kind.  Plain and simple, he's an idiot.  Hopefully, the village which lost its idiot will soon come and reclaim him.
        Of course there is a petition started to get the man off the political trail, please sign at: http://www.petitionspot.com/petitions/RepHartyMustResign
        Perhaps we should start one one to get him out of the human race?
        Please note that I refrained from making comments on either Republicans or Tea Party folk...I thought that was rather big of me.
        UPDATE:  The Concord (N.H.) Monitor is today (3/14/2011) calling for his resignation. http://www.concordmonitor.com/article/245740/in-over-his-head-lawmaker-should-quit
         UPDATE (Again): This whack-job of a human finally resigns citing "slightly unfavorable publicity" which has made him less effective.  http://www.fosters.com/apps/pbcs.dll/article?AID=/20110315/GJNEWS_01/703159928/-1/FOSNEWS  Thanks to all who contributed to the slightly unfavorable publicity!
      
          And, he still refuses to apologize!

Guest Post on Journeys With Autism

       It is a great honor to have been asked to write a guest post on a blog entitled, "Journeys With Autism".  Rachel Cohen-Rottenberg, a remarkable woman, is the author of The Uncharted Path: My Journey with Late-Diagnosed Autism.  ItIt's a story of courage, vulnerability and acceptance.  Rachel also hosts and writes a blog about passion, advocacy and re-definition of our perceptions  of disability.  Please visit me at her blog site:  www.journeyswithautism.com.