Guest Post: A Nuance to the Dialogue About Dark Places

        I am honored to be able to host this guest post by Claire, a single mom to a teenage daughter who is severely disabled as the result of a stroke at age 6.  Claire is a devoted mother, insightful blogger and disability advocate extraordinaire.  Claire blogs at Break It!  A visit to her blog will surely not disappoint.

I would like to offer a perspective at this time, here on Phil’s blog, about the issue of quality of care when it comes to our severely challenged children.

I have read far too many stories of people who commit murder/suicide with their kids…heard too many people insinuating they would do so themselves if they could. I get it. Like Phil says, it can be perceived as a compassionate move when you know that what your child faces under “public care” is just this side of horrific. We can all accept, then, that this is a terrible social problem and should be addressed. None of us, however, are holding our breath waiting for it to happen.

Having said that, I would like to offer a bit of nuance to the dialogue here, based on my personal experiences. This is also the reason I am writing here and not on my blog, in case “somebody” reads it.

In my personal “journey”’ in caring for my daughter along with a spouse, I have the benefit right now of 20/20 hindsight.  And I can tell you that there is such a thing as “over-caring” for your kid. 

In the early days of caring for a child there is much to learn. The curve is steep and intense. You get caught up in it completely and there is nothing else in your focus. In order to get everything done, you set up routines and you fall into habits based on your child’s particular needs and on your ability, as a parent, to recognize those needs, even when the child cannot communicate with you directly.  No question, with few exceptions, a parent or parents are the best caregivers for their kids. I can honestly say, for example, that I can look at the back of my gal’s head and know whether or not she is okay.

But, what happened in my home can happen elsewhere too. There were restrictions that developed. The rule that there had to be two caregivers on the kid at all times…one being a parent.  There were restrictions as to travel, of physical distance from the child, of how long ones eyes were allowed to wander away from the child, of when it was okay to go to the bathroom. In short, all things became defined by the level of the kid’s care. No thought wavered from it and it was meticulous in the extreme…the positions just so, the foods, just so, the timing just so, the methodology just so. There was no wavering from the strict agenda and the strict interpretation of what was going on and why. No flexibility whatsoever.  The rigidity became a sickness in and of itself and affected the general health of the family, including that of my gal.  No change in pattern could be observed or allowed to happen. All actions were based on passed crises, and the attempt to prevent all future crises…as if that were even possible.

What happened was the creation of a virtual prison for everyone. The level of care was so extravagant that it was not possible to re-create without the constant supervision and intervention of a parent. I found out only later that none of my now cherished caregivers liked spending more than one shift a week in our home, it was so oppressive.

So I left before it killed me and my kid, quite literally.

I have since relaxed all care protocols. The difference it has made to everyone is huge.  The difference it has made to my child…almost unbelieveable.  She is allowed breathing room, space…physical and emotional.  All of us are. The environment is healthy and, more importantly, it is possible to keep up the level of care with different caregivers, unsupervised…un-harassed.

And one more thing: when the other parent was observed interacting with the kid by a much loved and very knowledgeable guest, the comment was, “Does he always crawl up her ass and out of her mouth like that when he’s with her?”

So…my point: there is such a thing as poor care. Care so poor we would rather kill off our kids than allow them to experience it. There is also such a thing as care so over the top it is not possible to re-create anywhere, in any way. This hurts us and our kids too. Balance is the key and it serves all well.  Let’s just make certain we examine our lives and see the truth of the matter before anything else.

Dark Places...

       I have been reading with great interest comments about the George Hodgins (murder) and Elizabeth Hodgins (suicide) which recently occurred in Sunnyvale, CA.  George was an autistic 22 year old man who was rather severely involved, behaviorally and cognitively.  He was non-verbal.  Elizabeth, his mother,  cared for her son and searched for a day habilitation placement when he aged out of school.  Nothing appeared to work out. No supports, no plans, no real assistance...she decided that their lives should end together.  It's commonplace to refer to this as a :murder-suicide. This is one story of many which follow the same theme....severely disabled child-loving parent!  These stories are legion.

       Many people, especially in the ASD (Autism Spectrum Disorder) community on Facebook, are outraged over the focus which the media has placed on an over-wrought, emotionally depleted care-giver mother.  Commentators focused upon the lack of attention given to the killing of a disabled child and the murderous act of the mother.  Writers and bloggers believe that yes, there was a paucity of services; yes, the mother was over-wrought and that she should be identified as a perpetrator and murderer.  Comments abound that the killing of a disabled child is a heinous action and that it can never allowed to happen again.

       Could there be another side to this very tragic story?  Is the world so black and white that no other explanations are possible nor plausible?  Could, in their dark place, the hidden recesses of the human psyche, there be a place for an act like this to be a act of love?  The murder of a severely disabled child is a heinous event if the parent lives, becomes unburdened and is freed from an impossible life without supports.  Is the scenario  identical when a severely disabled child and a loving, care giving mother leave together?  There are no blacks and white, no absolutes and above all there should be no judgements by those who do not know.  The dark places in our souls can reveal truths no one wants to hear.  So let's explore this further....

      My son is totally disabled and a medically complex human person (sorry, Amber).  My wife and I alone know his body:  how he needs to be fed, how he needs secretions cleared, how his bowels need to be stimulated and retained urine released.  We know how he signals pain and how he signals peace.  We know how to get him to sleep and when to re-position him.  We know how to clear his lungs.  We know how to prepare his pureed meals and provide a host of supplements and feed him over an hour's time.  We know when he is ill.  Doctors depend on us to tell them what is wrong and what needs attention.  Left to modern medicine, he would have his g-tube replaced and a trach inserted with regular suctioning.  We know how to manually release his spasticity.  We know his soul and his body as he is totally dependent upon us.

     Our dark place is that he will outlive us and if he does he will be alone.  Children/adults like Adam (who is now 26, 14 years post accident) usually have one option:  nursing homes, which are cesspools of germs, staffed by some people who are under-paid and blatantly indifferent.  Nursing homes for the severely disabled are rank with neglect, with abuse, with indifference and patients are prone to being sexually abused,  Placed in a nursing home with people of all ages, many of whom have lost their minds and spirits, is a death sentence.  Don't kid yourself!

       My dark place is that my son will outlive me.   My dark place is that no one else knows him, his body and his spirit; and that few really care...they all have to get on with their lives so they can enjoy their brief stays on this temporal planet.  In a nursing home or a residential placement, Adam would die and it would not take long, and even that length of time would be marked by horrific abuse and indifference....yes, that indifference that reduces people to an abstraction.  No one really cares about abstractions!

       My dark place leads me into the fear that my son will be alone and aloneness is worse than death.  He can never be alone, in life nor in death.  He has a father and a mother who love and protect him from the indifference and harm of the world.  My deepest darkest place is my son's aloneness...he does not deserve that nor will I allow it to happen.

       

       Would you condemn us or judge us if we left this plane together?  Would you understand our need to express our love to be together?   Would you mock our belief in the beyond?  Many people believe that their companion pets will meet them at the rainbow bridge and cross over together.  Can we extend that same belief to humans?  Would you condemn us as murderers of a disabled person is if we chose to be together at a point in time?

       Bloggers and newscasters who are  righteous and condemn Elizabeth Hodgins have usually not cared for a severely disabled, medically complex son or daughter and committed their lives to that task.  Black and white judgement is very, very easy to come by. It requires no effort nor an ability to "see and hear" that which is not apparent.  Judgement of others and their decisions is perhaps the greatest of sins, just behind human indifference.  What dark places to you venture to?  Our stories are legion!

When a Picture Is Worth A 1,000,000,000 Words.....

Comments are disabled for this post!
Just sit in silence with it!

Guess What .....There is a god!

Oh, happy day!   Aimee and Tony!

Ok, so here's a picture of the happy couple!

Catastrophic Thinking.....Welcome to Disability-land!

       July 24, 1998, Adam almost died...maybe he did and then he came back into his body, maybe his spirit never really left his body, maybe it hovered above and was waiting to decide about life or death.  Twenty five minutes under water and when they finally pulled him out no pulse, no respiration, no heart beat, blue color, low body temp, but a serene face...no mask of death I was told.  Of course, the camp never called me.  Of course, a trauma center social worker called and said my son was there,  two hours after the incident.  Of course, I told her he could not have been in a swimming accident because he was hiking at a premiere camp.  She said, "don't come alone!"

      Well, that was thirteen and a half years ago and the words and memories are etched in every cell of my body.  Adam is OK.  OK does not mean verbal; OK does not mean he can move his arms or legs with intention.  OK does not mean he has a straight spine, a body free from multiple contractures.  OK does not mean he can chew or control any of his bodily functions.  OK does not mean that his basal ganglia magically healed. He's OK...most of the time.  He can smile and he is is happy, most of the time; above all, he lives.  The "really happy" part is something which I cannot attribute to many people I know.  The tragedy is not that this "thing" happened; the tragedy is that most people could give a rat's ass about him and how he's doing.


       How are mom and dad doing?  Well, most people don't give a rat's ass either.  We're OK, except for a phenomenon called catastrophic thinking coupled with undifferentiated anxiety!  


       Catastrophic thinking can be defined as ruminating about irrational worst-case outcomes. Needless to say, it can increase anxiety and prevent people from taking action in a situation where action is required. This can be especially true in a crisis situation. 


       Need some real life examples?  Adam hasn't peed in 12 hours, hence do we need to take him to the hospital because his urethra needs a roto-router job or his bladder will explode?  Adam misses a bowel movement, does he need to go to the hospital because it must be a bowel obstruction due to a collapsing pelvic structure?  Adam is hyperventilating, so does he need a hospital stay because he must have aspirated some pureed food....damn, we removed the g-tube after three years of feeding him high fructose corn syrup.  Adam can't sit in the wheelchair for more than two hours, let's get  a consult because his hip must be subluxed.  Adam has a temp, is it a lethal form of pneumonia?  Irregular breathing, must be a death rattle?  Falling asleep during waking hours, must be over medication?  Ten thousand scenarios, ten thousand occurrences of catastrophic thinking, ten thousand imaginary trips to ICU'S, ten thousand deaths.

       
       People think that you can cure away, therapy away, medicate away catastrophic thinking and the resultant pervasive anxiety...not in this lifetime.  Every deviation from that which is routine, from that which is normal, causes undifferentiated anxiety and catastrophic thinking.  Not that you haven't dealt with stuff, but simply because there are wounds that never heal...they do not heal ever, the kind of the chronic sorrow stuff that textbooks are written about.


       You live on the threshold of death every fucking day.  Not that's it imminent, not that you are afraid of it for yourself, but that you cannot bear the thought that your kid will be alone if it happens, either to you or to him.  I cannot bear the thought that he would be alone...like he was when he nearly died almost 14 years ago.  The root of catastrophic thinking...he would be alone and that I were alive, he would be alone somewhere in energetic outer space.  It's hard to deal with that shit!

    Could some of these thoughts be true? Many anxiety-sufferers will say, "Yes!" However, what is the likelihood that they are true? The anxiety that is caused by catastrophic thinking far outweighs the actual consequences that will be experienced .

    The fight-or-flight response (also called the fight-or-flight-or-freeze response, hyperarousal, or the acute stress response) was first described by Walter Bradford Cannon.  His theory states that animals (and we are part of that evolutionary group) react to threats with a general discharge of the sympathetic nervous system, priming the animal for fighting or fleeing. This response was later recognized as the first stage of a general adaptation syndrome that regulates stress responses among vertebrates and other organisms.

    An evolutionary psychology explanation is that increased anxiety serves the purpose of increased vigilance regarding potential threats in the environment as well as increased tendency to take proactive actions regarding such possible threats. This may cause false positive reactions but an individual suffering from anxiety may also avoid real threats. 

   The psychologist David H. Barlow of Boston University conducted a study that showed three common characteristics of people suffering from chronic anxiety, which he characterized as "a generalized biological vulnerability," "a generalized psychological vulnerability," and "a specific psychological vulnerability."  


        This is actually psycho-bable for catastrophic thinking.  I would imagine these demons lurk in the souls of every parent of a severely compromised child.  There ain't no healing, there ain't no dealing, there ain't no option to flee or to fight.  It's just there and will be forever.


     You live for today, you believe that you will see tomorrow.  You give all to today because you fear, in your deep, dark place, that there may be no tomorrow.  Being alone frankly shits....but I would not trade my life nor my experience for any one's.


PS. Thanks wiki, for the few lines I borrowed, which are obvious to the reader.