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.
I couldn't agree more with Claire about the oppressive nature of overcare becoming like another illness in the family...since I am more than just a little bit guilty of creating such an environment for my son.
ReplyDeleteBut the nuances of such a situation can be drastically different depending on the exact nature of the deficits a child suffers from. Of course each child's problems can be their own unique constellation of symptoms. But we do have to remember that personalities play an enormous role in extreme caregiving. The limitations of knowledge, coupled with characteristic behavior of the caregiver become whittled down and raw. It's not reductionism, it's the process by which we are stripped to basic psychological traits and then how we function with them.
This is also integral to a process of learning. In the beginning everything is more frantic. But here's the kicker: when your child's condition is by nature a progressive one, there is that moment when you switch from increasing the amount of care and worry, becoming perhaps more and more frustrated - to the stage where you except the change and your limitations. Some never reach this diabolical crossing point, having reached their modus vivendi early on. Others, like myself, stay stuck at the crossing point, grinding down their existance until they approach a point of no return. Some are able to rebound and continue on strengthened while others see as their only option, an end.
I also clearly understand what you are conveying in your message, Claire. Our kids are like sponges of energy around them, both positive and negative energy. They are so much purer than any of us and so aware of subtle energy in which they make their world. If they feel positive and light energy, they thrive and exude an equanimity which we sense and feel good about. Negative energies put a mountain in front of our kids which they cannot climb over. We also have worked hard to remove the negatives and enhance the positives... even if it means of letting of those who simply want to be spectators of our lives. I admire your courage.
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