'Tis the Season (Only a day, actually) To Just Be.......

My real-time hero, Greg House, MD

       Well, it's the holiday season; however you choose to celebrate it, whether you are a saint or a sinner.  Being the latter, I feel compelled to write on Christmas Day although I'm not sure I'll finish.  Adam is happy as a pig in the proverbial shit today.  No ABR exercises, no shower, no compulsory toileting rituals, no wheelchair time, unhealthy pureed food, movies about Santa's elves in bikinis (blond only),  movies abounding with adolescent scatological humor,  and maybe a splash or two of spiked eggnog.  A day off for his highness so that he can just "be".
       I often think that we don't give him enough time to "be" and we certainly don't give ourselves much time to "be".  Being in the moment is the mantra of the spiritually adept...not us, as we are really not given to conventional spirituality, nor are we adept (Christmas is a day of humility so I make this admission).  Moments in the day are regulated by things which need to be done, tasks that need to be accomplished and the mundane attended to...after that, there is little time to "be", just the peaceful sleep of the exhausted.  Hopefully, the karmic spin of the universe will allow me to live quietly in a Buddhist monastery in the next life time.  Just being...
       Anyway, my one day holiday wish is  for all parents and care-takers of the disabled to have one day to just "be" and to intentionally navel gaze.  It's ok, at least today, at least on a part-time basis!  Tomorrow will bring the same as yesterday...but not today.
        Additionally as a gift to all, I discovered and embedded a widget (top right side bar which will allow you to read this nonsense in pretty much any language...click the drop down menu and pick Russian (in honor of Leonid) or traditional Chinese.  In a flash the blog is now in whatever tongue you choose.  Well, off to brush breakfast off of Adam's tongue.
        A request, since I am mono-lingual, is for bi-lingual readers to leave a comment about how this translator  reflects the reality of the language.  I never trust widgets...especially those that track followers.  The numbers never match.

People vs. Dogs...Dogs Win!!!

Ollie, Adam's Doggie

     Well, this blog was to be about angels and demons, certainly not politically correct and probably blatantly irreverent...my wife of 29 years of marriage (she told everyone it was 30 last August)  vetoed the idea.  She said after the holidays, I would be allowed to publish; I do what I'm told! Hence, my happy holidays blog...

     So, I have decided to have a competition about the beneficial qualities of people versus dogs.  On the people side of the scorecard are most yokels excepting parents of disabled kids/adults and disabled people themselves and a few exceptional friends.  Few is to be very narrowly construed. On the dog side of the card is Ollie, Adam's rather pricey poochoon (a poodle and bischon designer hybrid).  We chose Ollie for Adam a year ago because the breeder told us that Ollie "needed a job" and we sure had one for him.  So this competition is about who demonstrates a greater sense of humanity, loyalty and downright pure selfless giving.  Ready"

       Adam has contractures in his hands, wrists and elbows, not a particularly pretty sight.  People usually won't touch his hands to hold them.  Ollie snuggles up to his hands and warms them.  Ollie: 1 point.

       Adam sometimes drools like a waterfall and when he's annoyed about the taste of a meal, he will spit it out, usually on someone's shirt.  People find this disgusting and either look away or give one of the parents (Sharon and I) a napkin.  If you touch drool it may contain some contagion, no?  Ollie loves this and will lick up drool and clean off Adam's mouth and clothes with his very sanitary tongue.  Ollie: 1 point 

       Adam will stare right into your eyes and this makes people uncomfortable.  One fine lady never returned to visit because she felt that Adam "looked into her soul."  Must have been some pretty seedy stuff in there!  Ollie will walk up Adam's chest and stand there and stare into his eyes, although sometimes he likes to lick the inside of the boy's mouth scavenging for not fully swallowed food.  Because of this somewhat irritating behavior, Ollie only gets .5 point.  If we break him of the mouth licks, he will get a full point.

        People are often afraid to spend time with Adam alone because they don't know what to say or what to do.  I mean, really, what do you say to someone who can't talk to you and just wants to look?  Ollie will curl up on Adam, hug him and warm him.  Ollie scores another point.

        People rarely come with presents for my disabled man-child.  Really, what is he going to do with a gift they probably think? Or he can't even appreciate it, right? Wrong, wrong, wrong.  Adam would love some comfortable new clothes, a new movie or music video, a book to be read to him or maybe a unique mobile for his bedroom.  Honestly, no ones deserves presents more than my Adam.  He wakes up every day and works all day long. . .   Unfortunately, I do remember when Adam came home after weeks on end in ICU after the accident with a prognosis of persistent vegetative (I really F***g hate that word) state (they were wrong, wrong, wrong), someone sent him a wrist watch for Christmas.  We would have had to break his fingers and wrists to get it on and I am very sure he was interested in knowing what time it was since he never slept in those early days!  Knowing Adam, he would rather have had a "South Park" video. We impolitely sent the watch back (seemed insulting to us)....never did get another gift.  On the other hand, Ollie leaves Adam "unintended gifts" which we have to clean up, but he is getting infinitely better.  Ollie scores again, somewhat.

       When people speak to Adam (those rare few sentences) they seem to yell aloud and iterate words very slowly.  He's not deaf!   We had him tested 12 years ago.  Ollie simply lays there in a deeply communicative silence.  Ollie scores 2 points, so he can make up for the accidental presents!

        Adam will sometimes reflux  or whatever, spew something from his mouth.  People will run to get you a three inch thick pad of paper wipes.  Not faithful Ollie, he'll do the work himself and no need to waste paper as he is an ecologically minded doggie.  Ollie scores again! Also, Ollie is never hesitant to do a mouth swabbing after a meal, so we have to be watchful, but he saves us mucho dineros on mouth swabs.... an extra point.  Mother always told me dog saliva is very clean?

Shining a Light on a Contorted Body

Terraquant Pro Cold Laser

                                                                                        




    As most followers of this blog are aware, I am a big fan of ABR (Advanced Biomechanical Rehabilitation) because it works and is increasingly supported by solid science.  Adam is very spastic and has numerous contractures of his extremities.  I don't imagine that he is comfortable, but despite the absence of any medications, he is in the state of perpetual smile.
     Seven years of ABR and running!  Adam's body is changing in a positive direction, spasticity decreasing, spine straightening and the visceral landscape looking progressively better.  We are headed to mobility and function.  A totally non-invasive, very parent intensive therapy does work!
      Never failing at researching new ideas, I stumbled upon the use of cold lasers and quantum reflex integration for children with cerebral palsy, brain injury and other conditions which effect body function and mobility.  Being a seven week old naive practitioner, I am slowly seeing cold lasers as a compliment to facilitating the body to receive an even more beneficial impact of ABR.
       Simply, primitive reflexes are automatic responses of infants to elements of their environment which are essential for survival.  These reflexes, when integrated in the first months of growth, lead to the development of muscle tone, motor skills, sensory integration and cognition.  When these primary reflexes remain active and dominant, difficulties emerge.  In children who experienced birth brain injuries, these reflexes are never integrated.  Reflexes which were integrated can later re-activate in cases of anoxia (near drowning), brain trauma, toxins, etc. and impede healing as they remain dominant and not integrated.
        Primitive reflexes (ie. the Moro, Babinski, Asymetric Tonic Reflex, etc) originate in the brain stem...the area responsible for survival.  The body, under stress, acts from the brain stem and cannot access the prefrontal cortex where information is analyzed.  Hence, children and adults with brain assaults can re-activate these reflexes and develop issues of a lack of mobility and function, lack of control of bodily function, speech delay etc.  So, is there a way to re-integrate these reflexes to facilitate the healing process?   Possibly....
        For the past seven weeks, I have begun to add about 45 minutes a day of cold laser treatment and reflex integration protocols.  Adam used to startle easily (Moro and Fear Paralysis Reflexes), eats pureed foods and drinks well, but doesn't suck through a straw (Babkin and grasping reflexes), and so on.  Well, changes are happening and it's often hard to distinguish the root of the change (ABR vs. QRI).  I have noticed that Adam is losing much of his startle reflex; he frequently looks to the side to find me instead of fixating on the tv; his knees are looking like knees (not tree limbs) and there is much more flexion in each knee independently.  This is the beginning and its preliminary and subtly exciting.
        Cold lasers have been around for awhile (for ABR fans, a Russian development).  Simply, amplified   light at certain frequencies transmits energy (quantum physics) to penetrate to deeper body layers...the light is cold so there is no chance of harm unless you shine it in the eyes.  QRI (Quantum Reflex Integration) uses a cold laser and targets certain acupuncture or trigger points which facilitate integration of primitive reflexes.  There are differing protocols for each reflex.
        I have seen change, but it's early.  My Happy Holidays! wish is that this procedure will eliminate some  of the reflexes which could interfere with Adam's body's receptivity of ABR therapy.  As another non-invasive adjunct,  it will do no harm and has the potential for much good.  So far I'm impressed and little in this life, other than my family, impresses me much.  I will update as I really get involved deeper.
         Warmest wishes for the holiday season which is a particularly conflicted time for parents of kids with disabilities.
          Stay tuned for my post holiday blog, Angels and Demons......

Illusions, Delusions and Wishful Thinking...THE Cure Is In Sight

     After twelve years of searching for answers to what actually works with our son's contracted, disabled body, I believe that I have developed a repertoire of knowledge exceeding most people in the medical profession and allied therapies.  If it exists, we have tried it; if it didn't work, we gave it up and kept on looking.
      Some  therapists and doctors communicated clearly that they believed that their intervention would make a difference in our son's life but they truly were "in over their heads", not understanding what impact they could actually have on our son.  Understanding brain injury is not a priority for most professionals because they believe, mistakenly, that healing plateaus after six months or a year. Still, in their arrogance they would say, "I can help your son." and we would believe them, investing time, energy and money.  We heard it too many times over the twelve year span.  A few professed to "know" what Adam wanted and this always hooked us.  In my life, I have only met a few authentic clairvoyants who can tune into the deepest reaches of the inner Adam or the inner Phil.   He, like his dad, doesn't like to reveal much of his feeling world to others...it's a man thing.
        This blog entry confronts  those who sell hope when they are really selling themselves; who make promises based upon a myopic view of their own realities.  Adam is severely brain injured, non-verbal, spastic and needs every aspect of his life attended to. We lovingly take care of him every waking hour.  He is also simply beautiful and lovable and only occasionally a pain in the ass when he spits his carefully prepared and pureed food at me.  So what works and what is simply bogus or placebo?  Glad you asked....

• Botox (to reduce spasticity):  Poison is poison; some recent studies show that botox affects more muscles than targeted.  Effects are minimal, treatment is painful, many injections to deaden targeted muscles; short duration and you need to keep poisoning your child.  Doctors say the poison is minimal, ok......if you say so.
• Serial Casting (to stretch spastic and contracted muscles):  Pump botox into a muscle, stretch the arm and cast in plaster.  Repeat the process.  Son howls in pain so I use wire cutters and remove the cast...really, makes the contraction worse.
• Traditional Physical and Occupational Therapy (Also AFO's and DAFO's):  Here is a science that hasn't updated itself in 50 years.  Pull and tug repeatedly on a contracted limb and it will stretch the muscle.  Nice theory, but no science behind it.  Makes the contractures worse.  Even well intended people who cannot see beyond their allopathic training can actually do harm despite their motto of "First, do no harm."  Trite sayings "piss" me off.
• Craniosacral Therapy:   Adam received this form of therapy for many years - fitting our need to find gentle and non-invasive ways to help him.  Therapists tune into what they call the craniosacral rhythm.  The practitioner claims to gently work with the spine and the skull.  Restrictions of nerve passages are said to be eased, movement of fluid through the spine is said to be optimized and misaligned bones restored to their proper position.  Very little scientific support for this and the training seems minimal. Don't believe it hurt Adam but not sure it helped. Finding an effective and well-trained therapist is essential.  
• Standers and Gait Trainers:  Well, these might be useful for mild disabilities.  There is no theory about why you put a person in a stander other that a normalization process (it makes the parent feel good).  So take a weakened body, with unstable joint capsules and unstable myofacial structure, strap them into an upright prone and supine position and guess what happens?  Well, gravity (remember Newton getting bopped with the apple) pulls down on the visceral body core and the spine is pulled left or right depending on which side is weakest and you get massive scoliosis and deteriorated joint capsules.  So my son feels normal in a stander they say, but what price does his body pay. PT's will tell you that gravity's pull reduces tone....yeah, right.
• Speech Therapists:  Well, they are good for oral motor stimulation when your child is ready to transition from a tube feed to  mouth.  They can also arrange for a modified barium swallow test to insure kids don't aspirate. They also try facilitated communication (hocus-pocus projection of the facilitator); eye gaze; buttons, switches, etc.  They all are outrageously priced and when the result rate is 50% correct, the Speech Therapists announce success.  That's the same rate of success as a random coin toss.
• Intrathecal baclofen pumps:  A hockey puck with baclofen implanted near the abdomen and shooting drugs into the spine.   Makes life easier for the caretaker, but what about the child.  Infections, wrong dosages, poor circuitry, infections, dislodged catheters, infections.  "I know this will help your child."
• Surgery:  Always a bad option unless the child is screaming in pain around the clock.  Cutting tendons, spinal fusions, steel rods to cure scoliosis, hip subluxation operations, removal of salivary glands because drooling is unappealing, etc.  Most surgery is either cosmetic (so the child looks normal) or to make care-giving easier.  With scaring, infection, hospital borne illness, continuing body changes because of a lack of address to the myofascial collapse caused by brain injury, surgery leads to repeated surgery and not for the increased function or mobility of the child.  The more invasive the procedure, the more likely it won't work.  One of our biggest mistakes, early on:  a tendonectomy (still whip myself for allowing this intervention).
• G-Tubes, Fundos and nissens, etc.  Valuable  in life and death situations. Try by whatever means to facilitate oral motor development and proper swallowing (one approach is deep pharyngeal neuromotor stimulation). The natural path of food is mouth, esophagus, stomach.  To bypass these organs will lead to an lack of exercise of these portions of the digestive tract.  A lack of exercise leads to weakness and atrophy.  Any guess why so many people with g or j tubes have serious reflux, vomiting and all sorts of gastric issues?
• HBOT:  Actually not on my "shit list".  Effects are there but somewhat exaggerated.  150 dives helped Adam's peripheral vision, cognition and general health.  Spasticity was reduced but regressed when treatments stopped.  I speak of this therapy as a plus.
• Homeopathy:  I have some good things to say.  Some report that these modalities are primarily successful because people believe that they will be.   The placebo effect is actually very good, it produces positive change without invasive techniques.  I like that!  We did have some dramatic responses from Adam after a few homeopathic remedies, convincing us that it was probably more than placebo,  allowing us to believe in the actual energetic effects on body systems.  

A Level Playing Field, Ya Think?

       Many people (friends, family and most of the world) assume that the playing field of human relationships should be level and that everyone should play by the same rules, adhere to the same conventions and that precise and measureable reciprocity should guide all behavior.  Well, mostly this is true; but, in some cases, like ours, it's an untenable myth.
         When you carefully examine why people who offer a helping hand in the beginning  often disappear, it can sometimes be attributed to a perceived injustice "you didn't take our advice", or "well, you could pick up the phone, too" (that is between 4 hours of  manual ABR, 10 hours of machine ABR, diaper changes, pureeing foods, lengthy feedings, appointments and a few precious hours of sleep), or "you're always welcome to visit us at our homes" ( but is your home wheelchair accessible, nearby, has a hospital bed, nebulizer, suction machine and a case of enemas?).  Somehow when taking your child to a movie down the street is a major production, traveling many hours in a wheelchair van with half the house packed in back just doesn't seem reasonable.  But, calling, visiting, etc. is something we should do regularly if the playing field is to be level?  Gee, it's not!
        Also, when you examine why some old friends disappear and you and your disabled child are no longer their social good-will project, you hear the same type of dribble which always assumes the playing field is level.  Here are a few: "Well, you have a phone, too.", "This is too hard to look at, it's like Adam sees into your soul.", "Just so very busy.", "It's depressing.", "You have such a hard life.", "We don't know what to say or do."  And so it goes.  Thankfully, my South and Central American ABR comrades have assured us that this is a cultural, American phenomenon...or so I hope.
          After a time, you realize that the journey is lonely yet personally inspiring; disability exists only in the eyes of the beholder; and inability to move or speak makes for a pure soul, a contorted body is merely a temple of the source.  Few are willing to accept these realities and so they make up a "personally plausible story" why it's too hard to stay connected for the necessary years of care-giving, however long that may be.....authentic healing is a long, loving process.  Parents embrace the process because they connect with the deeper roots of love.

On Being Grateful.....

     My wife told me that I should blog about gratitude today.   Today, of course, is Thanksgiving and commemorates the day of our first (and last) Caucasian and Native American communal feast which celebrated a sharing and appreciation of our diversity and newly arrived at cooperation...shortly, thereafter we plundered their land, raped their women, stole their children and  defiled their connection with source and imposed Christianity.  I "should" celebrate Thanksgiving but something rings a bit eerie.
      Then, my wife read me a tribute some one wrote in the local paper.  They were thankful for sight, because some people wake up blind; they were thankful that they had hearing, because some people greeted the day without being able to hear; they were thankful for the ability to walk because some people wake up to start the day without this ability, etc.  They probably forgot for to be thankful for the gift of thinking and expression because some people wake up without the ability to express and think coherently.  Of course, these "feel good" diatribes always credit god (whoever she may be).  I believe the missive is "There but for the grace of god, go I...."  Frankly, god is neither responsible for your sight or someone else's lack of it or for your lack of challenge or someone else's profound challenge.  She didn't make it happen nor will she make it go away.  So I found  being grateful for happenstances in human existence (either positive or negative) an energetic depletion. Anyway, I always believe that the more challenged a person is, the more pure spirit they are; they are  more godlike.  Things are the way they are and our humanity derives from a simple acceptance of that moment which does not last that long in the scheme of things.

         So, being an ingrate, I choose to blog about what I honor in this life:

• I honor my severely challenged son (my daughter dislikes the word "profoundly disabled" so I honor her wish).  I honor the truth that he chose, before this particular existence, to have me as his father, Sharon as his mother and Aimee as his sister. I am humbled and try to live up to the immensity of his choice.
• I honor my wife who is deeply committed to Adam's recovery and who has eloquently written about his journey.  I honor the reality that before this existence she chose Adam and I to join her in her quest for truth and genuine humanity.  I honor her unflinching commitment to Adam and to her helping me develop a healthy disdain for allopathic medicine.
• I honor my daughter, Aimee, who also chose before this existence to walk the path with Adam, Sharon and I and to share the trauma and the joy of this experience, but also to rapidly learn about the nature of many people and about true love.
• I honor the reality that this family of four, all for different reasons, chose to travel this journey to a higher level of enlightenment together...I know there are no others that I would want to walk with.
• I honor those few humans who I have encountered who are people of their word.  They always do what they say, even if the saying was "near impossible."  Our word defines who we are, it is the crux of our existence, it is "I".  It is god...."In the beginning was the word, and word was god..."
• I honor our commitment to fully understand why we allow certain people into our lives,why we attract certain types of people into our lives and why we have to let go of some people with due deliberation.

         So, I rejoice in the fact that we have chosen to walk an uncommon  road together.  "Word" is the important facet which defines our human journey.  Teilhard de Chardin said it best, "We are spiritual beings having a human experience."  I honor all who have chosen the "road less traveled..."

On Human Indifference . . .



One of Adam's ABR sessions

        Expectations drive our lives.  We expect our actions to produce certain reactions.  Of course, when those actions fail to produce what we need, we experience disappointment, grief and disillusion.
        Sharon's new book, Ceramic to Clay,  seeks to encourage people to understand trauma, to learn about authentic healing, to empower people to embrace their journeys and  to understand their calling at a deeper level.  She wants to share her story with those who have experienced life altering events and with the people and the communities who surround them.  Her expectation seems clear and, hopefully, will be realized.
        My expectations are different.  Given the promotion of the book, articles and photos in our hometown media (where Adam spent his first 21 years), announcements through social networking, I expect a resurgence of humans into Adam's life.  His many classmates and a plethora of teammates, his teachers and therapists, our friends and many family members .  . . I expect them to rush here, to call, to send a card  to celebrate the life of a thriving, joyful friend and relative.  One old friend did immediately visit and it was so good for Adam.  Are my expectations unrealistic or hasty?  Is it because Adam is non-verbal and non-ambulatory?  Are people afraid of a very challenged friend and  don't know what to say or do?  Is it because (12 years ago) many promised to walk by our side for as long as it takes and disappeared?  Do they reject our path and did they hope that we would usher him into an institution?  Will they make up "justification stories" to themselves? Am I wrong to have expectation? Or, is it  simply the plague of indifference?
        
      

     "What is indifference? Etymologically, the word means "no difference." A strange and unnatural state in which the lines blur between light and darkness, dusk and dawn, crime and punishment, cruelty and compassion, good and evil. What are its courses and inescapable consequences? Is it a philosophy? Is there a philosophy of indifference conceivable? Can one possibly view indifference as a virtue? Is it necessary at times to practice it simply to keep one's sanity, live normally, enjoy a fine meal and a glass of wine, as the world around us experiences harrowing upheavals?

Of course, indifference can be tempting -- more than that, seductive. It is so much easier to look away from victims. It is so much easier to avoid such rude interruptions to our work, our dreams, our hopes. It is, after all, awkward, troublesome, to be involved in another person's pain and despair. Yet, for the person who is indifferent, his or her neighbor are of no consequence. And, therefore, their lives are meaningless. Their hidden or even visible anguish is of no interest. Indifference reduces the Other to an abstraction. " http://www.americanrhetoric.com/speeches/ewieselperilsofindifference.html, Elie Wiesel, 1999 (speech in Washington, D.C.)

       So many of our severely challenged children and adults are pure and rich human beings whose lives are often re-defined by the stares, the avoidance, the pity, the indifference of their fellow human beings.  There is no higher place in the universe than that reserved for those who honor the lives and the value of the resilient spirit of the profoundly affected by trauma at birth or by accident.  And, for those who promised to be with the disabled and their caregivers for the "however long it takes" and either passively and indifferently disappear or actively "make up a story" about why they cannot or will not, well, it is not about getting over it, or moving on,  for me it is about confronting  their indifference. 

"Ceramic To Clay" by Sharon Dzialo



Available for purchase at: www.ceramictoclay.com

        Sharon Dzialo, Adam's mom (and Phil's wife), has written and published a new book, "Ceramic To Clay".  This is a story of a mother's search for authentic healing for her son and describes the many paths which were taken to help Adam to move progressively toward recovery.  One of the most significant paths includes ABR (Advanced Biomechanical Rehabilitation).  The press release below provides an overview of this journey.
        The book is now available at the www.ceramictoclay.com (author's site), amazon.com, and barnesandnoble.com. A version on kindle will be available in the near future.
        Also, check out the information at Marcy Marchello's blog: Everyone Outdoors which not only speaks of Sharon's book, but describes great accessible outdoor programs throughout New England.

PRESS RELEASE

FOR IMMEDIATE RELEASE

2010 – New Release Tells Heartbreaking Story of Mother’s Quest for Helping Her Son Heal

Ceramic to Clay: A Mother’s Search for Authentic Healing for Her Severely Brain Injured Son

is released by author Sharon Dzialo

Everything changed when 12-year-old Adam Dzialo nearly drowned, spending more than 20 minutes underwater. The accident transformed him from a healthy, vibrant sports player to a tube-fed, nonverbal and severely traumatized child who screamed without sound and cried without tears. Traditional options such as surgery, medication and therapy of all sorts led not to success but to disappointment. But a meeting with an experienced clairvoyant shows the author a new way to treat her son, opening the family’s minds and hearts to a deeper – and gentler – approach to Adam’s recovery.

Ceramic to Clay tells not only Adam’s story but that of his mother, Sharon, a high school teacher and counselor. She takes charge of her son’s care, and the family transforms its dining room into his bedroom. The early days of recovery prove difficult as Adam’s friends stop visiting, traumatized by his contorting body, and loneliness and depression set in for the whole family. The author realizes that physical healing is just one aspect of the trauma the family faces. As they work with the clairvoyant, getting Adam’s spirit back into his body is the first of many success stories. Sharon also describes his first laugh after the accident and a compassionate aide he works with once back at school.

As Adam’s family continues nontraditional therapies, such as the Japanese healing technique Johrei, which offers healing and spiritual awakening, they open their eyes to other possibilities. Although setbacks occur, eventually they come to realize that circumstances can set them free instead of confining them. For instance, advanced bio-mechanical rehabilitation brings the chance for Adam’s parents to train to perform the manual applications themselves, so no more travel to therapists. The author’s honest telling of her son’s story will resonate long after the last pages of this heartfelt book are read.

----------

For further information contact: Ray Robinson at 317-228-3656, via email at RayR@DogEarPublishing.net,  or through the website at: www.dogearpublishing.net.

Ceramic to Clay: A Mother’s Search for Authentic Healing for Her Severely Brain Injured Son

Sharon Dzialo

Dog Ear Publishing

ISBN: 978-160844-758-9             152 pages                                                                                                              US

Available at Ingram, Amazon.com, Barnes & Noble and fine bookstores everywhere

The "Safety" Factor...Surviving

       Every organism, from the single cell creature to the multi-cell, complex human, is propelled by the most elemental need: to survive and to be safe.  All needs derive from safety and survival.  To eat and drink, to love and be loved, to understand and to be understood, to possess...these are all higher order needs which insure the safety and survival of the person.
       Parents of children with severe disabilities, brothers and sisters of disabled siblings, parent-caretakers of the elderly live is a state of constant imbalance because they are consumed about issues of safety for their charges and themselves.  Can I do enough?  Can I do what is necessary?  Can I muster the needed resources to make myself and the other safe?  Can I endure this role for months? for years? for a lifetime?  What do we need to do to keep our loved one safe...safe from those who don't care, safe from predators, safe from the crippling downward spiral of nursing homes and residential facilities.  We have  primal need to be safe to survive and we assume the role of ensuring the safety of those few for whom we really care...we would go to every conceivable extreme to insure the safety and survival of those for whom we care.

New Exercises, New Adventures

        Well, back from another ABR (Advanced Biomechanical Rehabilitation) training in Montreal.   Three days of intense learning and an armload of new exercises.  Applications to the pelvic area, thorax, various head areas continue to break up the spasticity which affects Adam's arms and legs.  Underneath that spasticity is weakness and that appears to be the issue we are now addressing.

       Given the large number of applications that Leonid prescribed, we are now doing about 4-5 hours of manual and ball rolling protocols each day and another 10 hours of machine.  We are equally anxious to have Maribeth re-join us this coming Monday to continue this work (She has worked with Adam using ABR since day one, seven years ago.).  For Adam, Maribeth provides 5 hours a day of intense ABR and a friendly face...we, in the meantime, get a break from reality.

       Adam's progress is steady and in the right direction.  His energy and sense of joy is unsurpassed.  Next week we are also beginning to use cold lasers and a reflex integration program to help extinguish some primitive reflexes which interfere with functioning and help integrate others.  We will provide more information later on Quantum Reflex Integration.

       Adam's positive response to ABR, the families we meet in Montreal, the program directors and trainers provide us with the enthusiasm and optimism to continue to embrace our journey to Adam's recovery.

Wounded Healers ... Part II

Parents of young and older children with severe disabilities often suffer from the symptoms of PTSD (Post Traumatic Stress Disorder).  I have renamed this issue as CTSD (Continuing Traumatic Stress Disorder) because it is a continuing event, "a wound which never really heals".  We are supposed to be safe, secure and healthy and a traumatic event at the birth of a child or a child's accident triggers the fact that we have lost control of our ability to be safe and to provide safety for our family.  Catastrophic thinking (the worst will happen), compulsive and repetitive thoughts, anxiety without a precipitating event, insomnia, hypervigiliance (so you can always be alert for disaster), etc. are effects of living with trauma which we can neither control nor fully understand.  Someone previously asked about available tools...here is a look into our kit.  This is not exhaustive, nor does it always work, nor is it appropriate for all.

• Therapy...it's necessary to talk about trauma, to grieve, to despair, to stumble.  My learning from therapy: "We are all spiritual beings having a human experience."; "Sometimes, you can never get what you want."; "You and your son/daughter are one with you.".
• Medication...it's important to interrupt those non-productive thinking patterns.  Over the years, many years, the patterns become less intense, less frequent.  It's ok to periodically have a mid-morning single malt scotch or 10mg of valium.

Off to Montreal...ABR,ABR,ABR

    It's off to Montreal again; this time for three days of training and evaluation.  Having joined the program over seven years ago, we travel north with the same sense of optimism and apprehension; always those same two conflicting emotions simultaneously. 

     We know that Adam's body continues to change and normalize after his traumatic brain injury.  Our perception of change differs from that of the trainers as change is more noticeable if you haven't seen someone in 6 months.  Living with Adam daily, change appears more slowly because you notice only small incremental change.  The trainers' feedback is always positive, the journey insightful, and the task ahead formidable.  Our apprehension always come from our fear that we are not doing enough and a notion that more hours will translate to quicker improvement.

      We will leave the ABR Center with new skills, new tasks and a renewed sense of energy.  Other sets of eyes will notice change that we have not recognized.  We know that ABR (Advanced Biomechanical Rehabilitation) works, so we are committed  to the process.  And, as always, we are anxious to return to the Cape...our home.

       Someone recently asked, how extreme caregivers who are living with PTSD themselves cope....the next blog will deal with some strategies from our toolbox.

Wounded Healers....Parents and Caregivers of the Disabled

                       

                                             A traumatic injury occurs at birth, or three years later, or twenty years later to your child...there is no magic formula which predicts what happens to you.  The reality of your child's trauma fills ever cell of your body; your soul is helpless; you make promises to always be there for him/her.  You are only as worthwhile as your word.

       A parent of a young or adult disabled child experiences every conceivable emotion.  You are at once hopeful, optimistic, caring and always looking for ways to heal.   At the same time, you are hyper vigilant, quite capable of catastrophic thinking, chronically anxious and always in fear of not being "safe."
This is the world of PTSD (Post Traumatic Stress Disorder).  In most cases, the trauma is focused on a single event (death),  or a series of similar events (war); in the case of parents of severely disabled children, the trauma is a continuing event.  It is not a past event which you can deal with in a number of therapeutic ways.
       So for parents of very disabled children, life is about survival...your survival and that of your son/daughter.  Life consists of avoiding everything which could impinge on that need to survive.  You do whatever it takes, at whatever expense.   There is no therapy nor medication to remove that imperative....you survive and out of this quest you slowly thrive.  The road is dark, has many curves and the journey is always in the quest of the light...the quest does not end.

ABR ... Running the Marathon

   In two weeks, we'll be back in Montreal for our evaluation and training...our seventh year.  While ABR (Advanced Biomechanical Therapy) is neither an instant miracle nor a magic bullet, changes in Adam's structure have been steady, consistent and predictable.
     We have assistance in the actual delivery of the exercises from a therapist trained in Montreal and both parents are involved in the manual and machine assisted programs daily.  Adam receives between 4-5 hours daily of manual and about another 10 of machine (we actually have two).  Given the fact that we are both technically retired, have additional therapy assistance and  are financially quite stable, we can commit to this approach daily.  Having spent much time with HBOT, craniosacral, acupuncture, homeopathy, communication devices and a myriad of other approaches in the early years, we have concluded that ABR is producing the most measurable results in positive changes to Adam's structure.  This leads to the strengthening of the weakness which underlies his spasticity.  We also believe that our initial forays (in the first years) into traditional physical (tug and pull, standers, gait trainers, AFO'S, etc), occupational and speech therapies negatively impacted Adam's structure and intensified his rigidity.
       Adam's progress over the past seven years has been consistent and has supported his general good health...no hospital stay in 12 years.  The work unequivocally produces desired results.  Adam's musculo-skeletal collapse was severe and resulted in multiple contractures and severe scoliosis (although we attribute the latter to a physical therapist's insistence on using a stander).   ABR halted the continued collapse and we began the long, labor intensive marathon always moving toward normalizing his structure.  Without ABR, we doubt that someone with Adam's injuries would be alive.
       We have greatly improved  Adam's quality of life...he is happy, healthy, and free from pain.  Routine and balance are important elements of our work with ABR.  Recently, the newly introduced technique of "ball-rolling", has definitely impacted Adam's level of spasticity very positively.
       We sometimes get tired, discouraged and go to "dark places"; but we never stop and we get further excited and empowered by the changes we see.  Recently, we have added cold laser therapy as an adjunct to ABR.  Our life looks different from others...especially our retired friends.  Our work energizes us and we can say "life is good."
  

The Other Child ...

     Within days of learning that Adam would live, an elderly and very disabled pediatric pulmonary specialist in the PICU, pulled us aside.  He told us, "Always remember that you have two children......."  The clear message was that in his experience, parents of disabled children often center their lives around care-giving and that other siblings needs are lost  in the commotion of the day and the years.

       For the past twelve years, Aimee has lived the trauma with grace.  While caring for Adam, we made a very concerted effort to never miss a game of this remarkable athlete and attended every event at which she was honored both academically and athletically.  We were always intentionally conscious of the fact that "we had two children..."  It is never easy to accept the reality that both mom and dad can't be there at the same time to join your life experiences.  We only were able to pull this off a few times, but Aimee understood that we had two children.
        From those high school days, Aimee moved on to pursue both her bachelor's degree and her master's of science degree in taxation at Bentley University.  With as much dedication, Aimee completed all portions of the examinations and requirements for her CPA (Certified Public Accountant.)  Since graduation at Bentley University, she has been employed at RSM McGladery (formerly Caturano and Company), one of largest accounting and taxation firms worldwide.  At the firm, she is now a Taxation Manager in the corporate taxation division.

        Yes, we remember every day that we have two children; each as valuable, each with their own gifts; each with an indomitable spirit.  To say that we are blessed is an understatement of great magnitude.

Getting On With Your Life...and Other Myths

Whether your child (or adult child) is disabled from birth or becomes disabled as the result of a life altering event, there is never a shortage of well-intentioned advice givers. Every parent instinctively makes a lifetime commitment to their son or daughter's care because it is simply the right thing to do. Obviously, this takes an enormous physical and emotional toll. Friends and family are often at the forefront in offering suggestions on ways to cope.

Most often repeated advice: "You need more help..."; "You need to get on with your life ..."; You need to get closure..."; and "You need to plan for a place of care when you are no longer able to do it yourself...." Everyone is often long on advice and short on direct help or substantive relief.

Yes, we do need more help (hired, of course), but in whose hands would you trust your child? Yes, we need to get on with our lives, but our child IS OUR LIFE and we choose to embrace that life with passion (it just doesn't look like every other person's life). Yes, we are told we need closure surrounding trauma which we witnessed and live with daily, but closure is an impossibility and we choose to embrace what IS; you don't just get over it. And yes, when caregivers get old, you need a plan for your child's care, but "not being home with mom and dad" is neither a passionate nor a compassionate plan for the future.

So, we have each other as a family and we will endure. We are happy with a warm cup of coffee and kind words and your presence. "Love is simply being there when you don't have to......."

Near-Drowning....Then and Now

A few mornings ago, while watching the news and getting Adam ready for his day...ABR, ABR and ABR...and a walk, reading and the movies, there was an interview with a Colorado family. Their two year old son was involved in a near-drowning in July. He was underwater for twenty minutes, given CPR and flown to a hospital where his body was kept cool using ice while in a medically induced coma. Except for the age of the child, this story was similar to Adam's. However,when Adam was life-flighted to a trauma center (twelve years earlier), they warmed his body and the outcome was that Adam was severely brain injured. Listening to the story with a lump in our throats, we are happy for the fully recovered little boy and sad for our young man. Doctors could give the family little assurance that the cooling of the body would work. Obviously, this procedure should be standard in cases of near-drowning. Wishing that "now" was "then", only takes us away from the present.

People have many misconceptions about the word "near-drowning." The severity of the injury depends upon the amount of time that the brain was deprived of oxygen, the age of the victim and his/her physical condition, temperature of the water, etc. Near-drowning does not mean that the person did not drown and that they are fine. Since Adam's accident, we have seen few near-drowning survivors, though we have seen many brain-injured children and young adults. People often ask if Adam has cerebral palsy because he has contractures at his elbows, wrists, ankles and knees. Basically, it comes down to a lack of oxygen to the brain and the part of the brain that is effected ( in Adam's case, the basal ganglia), This lack of oxygen often results in a collapse of the musculoskeletal system. We have discovered that the therapy ABR (Advanced Biomechanical Rehabilitation) addresses this specific issue. The inventor, Leonid Blyum, refers to ABR as the back door to addressing the structural effects of a brain injury...volume, mobility and then function.

For The Long Haul

One day we were a highly functioning, tightly knit family - two professional parents with two beautiful and active children. Then, a significant life-altering event occurs, the near-drowning of our youngest child, Adam Dzialo. We found ourselves regrouping around a severely brain-injured child. We have been involved in this dance for more than twelve years now. We know about the highs and the lows, the light and the darkness, the confusion and the wisdom. We also know that there are other families who have experienced similar challenges. Our old life, based on family, work and community connections has vanished and we have found it necessary to create a new life and community for Adam and ourselves.

By initiating this blog, we reach out to others who have experienced similar realities and challenges. We choose to keep Adam at home with us, providing a rich and enlightening life for all of us. We are willing to share our story, our strategies and our good and bad days.

Some of our future blogs will include:

• understanding the reality of near-drowning events, possible and probable outcomes
• the concept of "extreme care giving"
• the financial realities of caring for the severely disabled in the home
• the world of therapeutic options, alternatives to western medical ideology
• confronting service systems "intended" to provide help and assistance
• perspective and balance in one's inner and outer life