September 03, 2010


Dear God, dear God, dear God, dear God, dear God, dear God, dear God, dear God. There is a different emotion in each one of those 'dear God's. A different expression of feeling. Exasperation, melancholy. Dear God! Triumph!
On paper it is difficult to read into that unless you possess some basis of shared experience, so that you can understand it. I am certain the extreme multi complex handicapped child would like to use such a phrase in just so many ways. As I'm certain he does. He doesn't speak of course. He has only a moan, or a slight eye movement? In that he expresses his emotion. But we can't read into that. 

Then of course there is conventional thinking that such a child's emotional range, if not charge, is flattened by a capacitative dysfunction in the ability to build a framework or context for emotions.
What is love for the autistic child? Let alone for the child so developmentally truncated that there is no true communication to speak of , no way of expressing anything beyond pain and happiness. Black and white. This reminds me of Ashley X who, according to her Father, had no cognitive development. That was then; I wonder if he feels the same way now. I am concerned with my son and all children who cannot possibly express how they feel and whether or not they are capable of  feelings.
How do you measure it? I know people whom are convinced their dog has enough personality traits as to qualify them as true members of the family. 

Part of the complexity is your becoming integrated with an extreme multi complex disabled child's being. Time, love, treatment, hardship will bring this about. Everything moves around in a circle, one problem becoming the next, or more precisely one solution is engulfed by the next problem.  The pain you feel is in part due to the lack of communication but you compensate by feeling the bond between yourself and your child as stronger ever still. You naturally take pride in the battles won, the scars have earned you bragging rights since there are no medals given.

What will happen in the future, you think? There will be fewer and fewer disabled children because technology will allow us to identify and abort or perhaps correct them before they are born? Or will there be fewer as selective euthanasia becomes accepted (why is that even an issue when abortion is a form of euthanasia?). Or will there be more simply because of the massive population growth we experience or more because the technological societies we have built create overwhelming amounts of toxic substances and electromagnetic disturbances which the developing foetus has a difficult time dealing with?
So many factors and of course many more to mention. Life and death, surely not a black and white issue, not possibly a black and white issue. Where does this leave us if we want to investigate communication. I can't communicate with my ex-wife, my mailman hates me because of my dogs and yet I am certain that I have some kind of mystical connection with my son who cannot speak and does not have the capacity for voluntary movement. He is a vegetable. Isn't he?

Yet I taught him to stick out his tongue. No he can't see but I was able to teach him that. He can do it enough times to show that it's not some kind of coincidence. My son does not blink. A fly can land on his face and start poking around in his eye and he won't flinch or even move his eye or react in any way. Yet when I ask him if he needs to defecate he will slowly lower his eyelids and raise them again. I did not teach him that. No one did. He made it up. He has said one word "Aba", which is one the first word a baby learns to say in this country, like dadda or mamma. He has said that word a total of about 15 times in the last twelve years. Fifteen times in twelve years.
I know that he knows what it means when I ask him, "are you hungry". Before he was fitted with a g-tube his reaction to that question would be to smack his lips, so I know he understood the connection. He hasn't reacted to the question for years now. And his "yes" of the eyelids is limited to just a few questions altogether and only one question for one answer on any given day. Missing two thirds of his cerebellum, Segev is not into repetitive controlled bodily movement that could be construed as communication. That's the extent of his ability to communicate. 

But, he is not a vegetable and hardly a zombie. He is more like a barelycognizantmotoricalyfutilelyunderendowedwatchamacallit. Or something. 
Communication. I don't think we are going to get to the bottom of this very soon. What is communication? We know. Or we think we do. We know how to categorize it. What do you do with the barelycognizantmo....uh.? They can't be categorized. So do we need a new set of criteria? New categories and sub-categories. Oh the doctor's would love that. No more need to communicate when you can categorize. Ship 'em off to their category and all is well. Having found their rightful, comfortable little perch, you see, their category. 
When your child is in this position of being, how is a category going to help?* Apparently there are mysteries out there in the world. And you know what is so striking about a mystery? That it's unknown, unfathomable, incomprehensible. And the one truth about mysteries is that there will always be people who are preoccupied with dissecting and categorizing the elements of the mystery with the certain knowledge that their catalog constitutes an explanation of the mystery, a solving of the riddle. 

And there will always be people, however few they may be, that, while they have the capacity to dissect and categorize, will choose to live in that mystery with the wholehearted faith that there are things we are not meant to pull apart and look at under the microscope because in the living of the mystery lies it's very value.

*outside of Holland I have not seen the phrase "multi complex handicapped children", used. I first started thinking of adding the term 'extreme' a few years ago and I do believe that for the sake of dealing with authorities that such a delineation is necessary to separate those children whose needs exceed most others. This may lead to such changes as the "personal budget" I mentioned in my entry "Prometheus". 

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