I (and others) have referred to our “club” … many of us have severely disabled kids and that is a different situation than many other disabled. I don’t think I need to describe further, and to be honest, I don’t know how. Pearlsky has no communication at all, I know two “Sophie’s” who do, yet we are in the same club for so many reasons.
I have readers who are not parents of “our” kids, I know that. Some work with the severely disabled, some know kids like ours, and some just are along for the ride.
All in all, we make up a community. Or, as Hillary would say (potentially), a village. And yes, it takes a village to raise a child.
To what degree are we a community and what are our responsibilities being members of such? Do we have any responsibilities toward each other?
Yes, I have a point.
All of our kids are unique, part of the nightmare of the severely disabled. Even when we have a diagnosis, it is partially meaningless since whatever it is manifests itself in different ways. The part I am interested in at this point is how we deal with our children, how we all handle them in our own way.
Some of us use naturopathy, some use homeopathy, some use herbal therapies, some stick with “main stream” medicine, and many use some combination. And, of course, throw in some praying to the Holy One, Blessed be He, or She, or cursing of said deity.
We read each other’s blogs, hear what is going on, send along words of support. But what happens when we really disagree with how something is being handled? It is one thing to not accept, for instance, homeopathy, but I would never think less of someone for following it (if, in fact I did not believe in it), nor would I offer my opinion … but is that to a point?
What if a fellow blogger in the community is having to spend inordinate amounts of money on something and you know for a fact there are ways to have it paid for? Maybe the blogger is not aware of the specific laws of their state, or the insurance secret words, or whatever. Do you tell them? Do you just offer an opinion unsolicited?
Probably you would. But let’s take it one step further. What if said blogger was not providing the best care for their child, within the confines of their chosen methodology? Again, I could not, nor would I, offer advice to a strict naturopathic methodology because I neither subscribe to it nor fully understand it. Yet, I do know “traditional” medicine very well … so if I see that a blogger is making choices that I know for a fact are not the best, or at least in my strong opinion, do I say something? What if their child is failing, so it is not just better treatments I know of, they are in fact, necessary. Who am I (or you) to offer unsolicited advice?
Do we want unsolicited advice? Especially when we think we are alone in the world (even though we do have this community, loneliness hits us all) and don’t even know to ask for advice. What if we think we are doing everything right, then advice will not be sought, yet our child is failing?
What do I, Single Dad, do when I think someone could be doing better by their child, when I hear from a couple of other community members, unsolicited, and they happen to mention the same thing? Do I have a responsibility to contact the blogger, via comments or try via a more private message, to say that we think s/he should try something else? Totally unsolicited? Does the health and welfare of someone else’s severely disabled child trump the potentially hurt feelings of the parent or discomfort of the parent? And, of course, since we are not there, we can be totally off base. I know that.
Pearlsky is nineteen. In so many ways, I’ve been there. Big hospitals, little hospitals, doctor’s with great bedside manners, doctor’s who are pricks (her first neurologist was always referred to as “Dr. Doom,” and he was world reknown), awful meds, great meds, herbals, prayers, wheelchairs, teachers, IEPs, state licensing boards, Medicare, nannies (sociopaths and wonderful), ex-spouses, and more. Do I know everything? Far from it. Do I know squat about your kid? No. But are there things I do know, and I see you doing in a way inhibits the best results? Sometimes. It is my place to say something? What if it is small like how to get your wheelchair paid for in full? What if it is big like how to potentially save your kid? Even more so, what if others agree and have said to me “what the heck is s/he thinking?” Do we just read and continue to watch?
If it’s me you sure as heck better tell me. But what if it’s you?
But what do I know … I’m a big city teaching hospital kind of guy.