Sunday, November 08, 2009

Does a mother "know" things?

It seems things have changed so much since Ben was small. When he was first diagnosed as PDD at age 3, I read ALL I COULD about autism, and actually had a deal with the library to increase the size of their "autism" books from about 10 to about 30.They were very kind to pay for it all, and never turned down a request. In those days, I read so much about hypersensitivity, and not so much about behavior.In fact, when I suggested ABA because of Catherine Maurice's voluminous book pages regarding teaching language I was told it was "cruel'. My, my, my, how things change. I guess the dying art of behaviorism found a new audience. Even Daddy Skinner, who purportedly said he was going to raise his child on it, couldn't do it.

Here we go. The things that stick in my mind are singular incidents when I caught sight into this "autism".

Things that continue to make me say, "Hhhmmmm....". Am I the only one who sees them? Am I too hovering, or is it my curious nature?

You know, it was a mother who kept bugging the chemist who discovered the problem of her children as an inability to rid the body of phenylalinine, which served as a poison to them as it built up. Phenylketonuria (PKU) was unheard of. Ben's speech teacher in developmental pre-school actually had 2 sisters who died early deaths in institutions (one at age 11) because it hadn't been discovered that decreasing phenyalanine in their diets could have allowed them somewhat normal lives. Every child had not been tested at birth for PKU or other diseases which could have led to special diets and very mild manifestations of the disease. When I studied PKU in my special ed classes in college, I found it simply amazing that this form of severe mental retardation could now be avoided in many cases..

We are fearfully and wonderfully made, and so complex that none can begin to understand the whole of us. Observation by a mother led to a treatment for a debilitating disease. She "smelled " in the urine of her children after they ate what no one else seemed to have noticed . Other children at the institution were also tested. This treatment didn't arrive in time to save her children, but many have been spared a more difficult life and early, early death. Was that mother not accepting her children the way they were? I don't think it had anything to do with acceptance or anything. It was just dumb luck. Hell, if science (observation, not heirachy) would come up with something today to make me more capable, I'd be first in line. Like Elizabeth Moon's book, I'd be there in the speed of dark!!

Kristina wrote an article on Charlie where she brought up "neurological storms". This euphemism for a type of neurological incident has no scientific corollary as defined as it's somewhat similar cousin in the electrical manifestations of, we don't know what happens or why...and I've seen it is increasingly used on autism forums. Is it chemical? I often see fear manifested in my son's eyes when he meets with unfamiliar situations...are his feelings of fear hyperacute because of a build-up of a particular protein? Is my own propensity towards depression biologicallly based? There are so many diseases that have already been discovered that are biological buildup of toxic metals---Wilson's disease and copper, Ben's own god-father died of Hemochromatosis (iron overload), undiscovered. When his liver gave out, they said it was because of alcoholism, which he drank to ease the pain.. Both of these diseases are far less dangerous when treated, and WON'T lead to early death, if they are.

Ben's Godmother Mary had a sister, Judy, who I might guess was autistic. Her family always felt that one day a medicine might give Judy the ability to talk, to supply whatever it was her brain wasn't manufacturing. Mary's mom was my mentor, and the reason I went into Special ED. I always saw her as a mother first, not a teacher. She started a school in a local church for kids like Judy long before Public Law 94-142 mandated "free and appropriate education". Most kids were sent to institutions in those days, and families told by doctors to just "forget about them". Of course, they never did.

These things that I saw, when Ben was younger, always made me wonder if some forms of Autism aren't a condition of the brain, like epilepsy, and thus not "mental illness" any more than epilepsy, Parkinson's, or dementia, Alzheimers and adhd are, and thus, wholly untenable to "talk therapy" or "behavioral therapy" or " cognitive therapy" or any other BS put out by APA any more. They can be wholly accepted as a difference beyond the control of the individual, they are NOT diseases of the soul. The way person's suffering from them are treated, can, however, be soul destroying. Medical or Psychological attemptst to "cast out demons" are no more than witchcraft, only to be believed if the shamans practicing them are good enough actors.

I have a few examples that always made me wonder while Ben was growing up. Vignettes that I shall never forget!

When he was about two years old, I remember seeing him shaking his glass of water that had been handed to him. "Isn't that cute? It's like he's swishing the ice in his martinee!" He couldn't hold on to the glass without trembling, I realized later on. It was a hand tremor, like in parkinson's. When he later was shown to have dysgraphia, it kind of chrystallized. He had always had reduced strength in his extremities. His toe-walking was very similar--he couldn't raise his feet--he didn't have the strength or muscle control or whatever it took. Even today, his feet fall as he walks. Why? What else has been affected?

Once, I saw how Ben's brain worked as clear as day. It must have continually been "shorting out"---much like you used to see on the adult ADHD commercial a while back where the womans attention continually changed channels. He had spilt water on his bed, and, like the good boy he had been taught to be, he went into the other toom to get a towel. He came back to his bed empty handed, reached down and felt the wet bed, and headed out again to get a towel. Coming back empty handed, he felt the bed and then set off for the last time, got a towel and set it down on the wet spot in his bed. I tried to explain to his second grade teacher that this must happen to him hundreds of times a day. Almost like a pre-mature senility---I've had that "what am I doing in the kitchen " feeling. I can't imagine dealing with it all the time as a child while your peers coast through. The power it took to focus, had to have been too much to deal with all day long at school. And of course, he was doing it on purpose,,,,,,,,,,,,,,,,Oh, my gosh I look back and think of how tired he must have been, and then he would work on homework for hours at home. This inability to focus was only reiterated recently when Ben told me he would have to work with trains. It would be the only way his interest would be high enough to focus in order to hold a job. Wise, that kid.

What do you know about your own child?  What has given you pause, even when your doctor told you it was nothing? What do you see as the disability, whether or not it is related to what you've been told? 

Wond'ring Aloud

I have started this post many times...created long diatribes of discussion within my own you love your child as he is, or not? He can be a pain in the rear, but so can I! I pick on him mercilessly and he does the same to me, because if I can make him laugh it is like music to my soul. Magic, pure magic.

You understand, I don't want to change that part of him.  At all. If autism is what makes him so funny, I'd rather he kept it.  All of our kids, whether they speak or not, have a personality that transends all that. It transends even the disability label...we love their very essence, as mothers. Their quirkiness, their gifts, their strong minds, in spite of what they have to deal with in this life.
But sometimes you notice... things, for lack of a better word.  It 's just that nit-picking part of motherhood, that says, "Is this out of order?  Should I be concerned?", the same thing that drives you to stick a cotton swab in their ears.  God forbid they have waxy ears.. You don't forget these things...Surely, "this" is a piece of the puzzle, which is more indicative of how little science really knows about autism than a dilemma of the autistic self.  Talk about projection:  We don't know so it must be their fault.  Like children who can't be taught by typical means...there's something wrong with them,  not the system.
When Ben was just days old, he missed his mother's voice.  No one will change my mind about that.  He was looking for his birth mothers voice, and I didn't have it!  I always thought I was crazy to feel that way until I read just today that a baby responds to his mother's voice in the womb, and will listen for her voice above all others when born. (Ben was adopted.)

There are other things I noticed. This was long before the current meme of  autism as  a disaster came up.  We parents were actually looking for similarities in our children to begin to answer the question:  What is autism?

I promised Dr. Chew I would write about these moments that gave me pause, when I seemed to have an awareness of something, vague as though it may have been.

Wednesday, November 04, 2009


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