Adam Dzialo

Adam Dzialo
Our son, Adam Dzialo, age 30

Saturday, March 31, 2012

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.


  1. 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.
    But 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.

  2. 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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