Saturday, February 27, 2010

Musings of a lonely mama...See if you can follow this train to the last station...



I don't know what it is about this place.  I find the most interesting people here. Maybe it's like church...you go out of habit and people expect to see you there.  Anyhow, that's how it used to be, when I was a good little catholic girl!

We also have a creed of sorts. It's kinda like this, "  Autism does not diminish the humanity of anyone",  although I'm paraphrasing somewhat out of ignorance.. It's also kinda sad that it has to be expressed...you would think the idea would be apparent.  Apparently, it's not. What with train wrecks, worse than cancer, worst welfare disaster in history, monsters and all. And death by autism a viable excuse for murderers. (If she had only been normal...) I guess you could say we have our martyrs.

We also have our teachers (rabbis?) who guide the flock, who are autistic themselves, which may not make the hub unique, but certainly make it real. They keep it real so mothers and fathers need not suffer the delusions of the masses. Sometimes our teachers are our children, who give us new eyes to see the world through and a distinct sense of purpose. Hopefully we have those "unsaved" scragglers who see our example, and turn away from promises of "cure" and towards acceptance, yeah, even verily towards celebration! Together we learn about science, education, psychology,medicine, and especially, advocacy.

I know y'all think I'm going on...being the drama-mama.  But just today, I am thinking...where would I be without the hub?  Would I still be constantly searching for cures, for adaptions, for doctors and ideas to help?  I was getting a little disgusted at the time and money involved, as well as the delusions I was encouraged  to take as gospel, without question... Somebody has determined that the typical desperate parent will spend at least "x" amount of money on shamanism, surely. For me, it was about $30 a month, not $50,000-$100,000 a year, like some.  (Oh, look, mama...here comes the gravy train!!!!!!)

In 1999, I began searching the internet for answers and found the mercury militia, milk/wheat free diets, ABA, AIT, Pubmed,  and Thinking in Pictures.  Dr. Temple Grandin is the only one who has stayed, because:  She could be my child, all grown up, as children tend to do.  She WAS diagnosed autistic.  She IS an adult.  She DOES speak and work and care about kids with autism, hopefully more than in a monetary/fame sense. Alas, she only wrote 2 books at the time, and Thinking in Pictures literally became my bible.  Later, Donna Williams Exposure Anxiety  led me into new pastures. 

And then that fatefull day of searching:  I had read The Gift of Dyslexia, by Ron Davis. and Thom Hartmann's ADD board lead me to believe that there were people out there who knew, who I could interact with, who had survived and thrived regardless of their labels. 

So I googled " the gift of autism"....nothing. (Things have changed...)
Being a child of the seventies, familiar with titles claiming "The Joy of...", I came up with Sister Estee and her blog, Joy of Autism .  What the....the JOY of AUTISM???  How about that?  Sister Bonnie of Aspergian Pride  led me to Brother Kev and the Autism Hub.  How in the hell I ever came to be in that place at that time was a fluke of timing and dumb luck. To be thrown into a maelstrom in the midst of  Autism Advocacy when it was only 2 days old to me is beyond my reasoning. I'm trying to catch up.  I learn something new every day...but the main thing I have learned is that there are labels, and expectations, and people (and me) pointing out my child's sliver in his eye and not seeing the logs in our own.  This is heady stuff , in an intoxicating sense.  There is no end to it. It continues to grow even as old churches and pastors attempt to join an ecumenical community of faith in reason and understanding, dreaming dreams that have yet to receive fruition: and the young pastors leading their flocks, pushing the boundaries of even that in their visions for the future. (Us old farts don't do visions).

And the world still spins, and all of this goes on under the noses of doctors and psychologists and teachers and therapists who haven't a clue.  This naivette can also make some of  them rich soil for planting seeds, they have no weeds of worries to choke it out, no stony assumptions that can't be changed and rob it of the waters of truth, no trampled paths where devils take away their common sense and fool them into false answers.  I'll be darned if the seeds of advocacy can't produce 100-fold.  That's what the truth does. It sets us free!  False prophets may try to stand against it, and fool even the elect, but they will fail.

Hold fast, brothers and sisters!  Do not grow weary of doing good.  (I really don't mean to exclude anyone, these are two examples I am very familiar with.)

You know, the Autistic advocacy movement reminds me of the gospel.  So many interpret it to mean different things.  We branch off and hold meetings and always see what the other guys are doing wrong and go around poking people in the eye and make it all about ourselves. It isn't.  What it is about is fighting those who use fear to frighten us into looking to them for answers, taking advantage of our fragile state. It's about the children beaten and killed and arrested by those who purport to love them or have their needs in mind.  It's about institutions full of people who have no other place to go, and no escape from their tormentors.  It's about agent provocateurs who are looked upon as experts, and experts who are looked upon as provacateurs. It's about quality of life for people who are not even given the grace of being seen as human or worthy of life by some who should know better, but just don't care. 

I'll end my diatribe with a song.







P.S___ I even surprised myself with this one!  It's about agent provocateurs who are looked upon as experts, and experts who are looked upon as provacateurs.   DAMN...my big teen age bundle of joy is out of town with his dad.  I love you, Ben!!!!!  This is what happens when I am left to my own devices...come back safe and soon!!!!

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4 comments:

r.b. said...

DAMNATION, I forgot ABFH!!!!!! Oh, well, I've got another blog post to sing her praises in the mix.

AutismNewsBeat said...

I also came to the autism blogs by accident. I can't remember my search terms, but Autism Diva came up first. Thanks for fighting the good fight. Glad to have you. ; -)

Osh said...

thank you...thank you so much

Clay said...

Very effective (and humorous) use of links. You didn't entirely leave out abfh, though she does merit more than just being included on a list. She's shown a lot of us how to do it.

Amen.

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