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.