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 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 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, 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. 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!!!!


Wednesday, February 24, 2010

The Blame Game

Why do we put so much on our children's backs? 

I've read a lot of things, but some things are just so p-r-e-c-i-o-u-s, you just never forget. 

ABFH made a comment on one of my posts, about 2 Wrights making a wrong...When I think of Wright, I think of Peter and Pamela Wright, who gives us Wrightslaw...and changed a nation, if only in a legal sense.  You can't legislate morality, you know.  (The other Wrights had something to do with AutismSqueaks, or some damn idiotic notion--They collect guilty dollars to live in the lifestyle they have become accustomed via poor parents of autistic children.  Think of Pat Robertson.)

I will never forget reading on Wrightslaw the advocacy article on school culture, specifically as witnessed by school psychologists. Listen to what they put on the backs of kindergardeners...let alone their parents. I'm going to quote parts of the article, to give you a good taste.
Dr. Galen Alessi, Professor of Psychology at Western Michigan University, conducted a fascinating study on school psychologists. Dr. Alessi’s study illustrates why so many parents have problems dealing with schools. Dr. Alessi’s article is "Diagnosis Diagnosed: A Systemic Reaction" published in Professional School Psychology, 3(2), 145-151:
The primary role of the school psychologist is to evaluate children to determine the reasons for learning and behavior problems. According to Dr. Alessi, when a child has trouble learning or behaving in school, the source of the child's problem can usually be traced to one or more of five causes.

First, the child may be misplaced in the curriculum, or the curriculum may include faulty teaching routines.

Second, the teacher may not be implementing effective teaching and/or behavioral management practices.

Third, the principal and/or other school administrators may not be implementing effective school management practices.

Fourth, the parents may not be providing the home-based support necessary for effective learning.

Fifth, the child may have physical and/or psychological problems that contribute to learning problems.
School psychologists from different areas of the country were interviewed and asked to complete an informal survey. The school psychologists were asked if they agreed that the five factors listed above play a "primary role in a given school learning or behavior problem." (Page 148) The school psychologists agreed that these factors, alone or together, played a significant role in children’s learning problems.

The school psychologists were surveyed about the number of children they evaluated during the past year for learning problems. The average number was about 120 cases (or kids). These numbers were rounded to 100 cases for each of the 50 psychologists for a total of 5,000 cases.

Alessi asked these psychologists how many reports they wrote in which they concluded that the child’s learning problem was mainly due to curriculum factors. "The answer was usually none. All cases out of the 5,000 examined confirmed that their schools somehow had been fortunate enough to have adopted only the most effective basal curricula." (Page 148)

Next, he asked how many reports concluded that the referring problem was due primarily to inappropriate teaching practices. "The answer also was none. All cases out of the 5,000 examined proved that their districts had been fortunate enough to have hired only the most skilled, dedicated, and best prepared teachers in the land." (Page 149)

Then, he asked the psychologists how many of their reports found that the problem was due mainly to faulty school administrative factors. "The answer again was none. All cases out of 5,000 examined demonstrated that their districts had hired and retained only the nation’s very best and brightest school administrators." (Page 149)

When asked how many reports concluded that parent and home factors were primarily responsible, the answer ranged from 500 to 1,000 (10% to 20%). These positive findings indicated that we were finally getting close to the source of educational problems in schools. Some children just don't have parents who are smart, competent, or properly motivated to help their children do well in school.

Finally, I asked how many reports concluded that child factors were primarily responsible for the referred problem. The answer was 100%. These 5,000 positive findings uncovered the true weak link in the educational process in these districts: the children themselves.

If only these districts had better functioning children with a few more supportive parents, there would be no educational difficulties. (Page 149)

Let me reiterate that:

If only these districts had better functioning children with a few more supportive parents, there would be no educational difficulties. (Page 149)

Once again:

If only these districts had better functioning children with a few more supportive parents, there would be no educational difficulties. (Page 149)

To be clear:

If only these districts had better functioning children with a few more supportive parents, there would be no educational difficulties. (Page 149)


Uhm...once again psychology proves it isn't abuse when it comes from them.

Saturday, February 20, 2010

pandora railroad

ah, yes, as i said in an earlier post, my son was undergoing a bout of avatar induced depression/obession. going off of abFh's recomendation,my son wrote his own fan fiction. i do not know most of the story but i do know that the railroad is heavily involved in rebuilding the lives of the na'vi.(jake sully behind the throttle of a 4-6-2 steam locomitive. thats a laugh!)anyway the railroads name is (as given away in the title) pandora railroad. the logo is the railrods initals translated into na'vi.
p.s. the c is actually an e. also ben said that calling the na'vi autistic is not being fair to the na'vi as the attetion span required to hunt for food on a daily basis could not be achived by anyone with autsim.

Thursday, February 18, 2010

i need...

Ben had a difficult day yesterday.  Dad runs a Homeschool History event monthly at the National Archives in Atlanta.  We have a loyal group of homeschool kids who attend, and Ben has attempted friendships with others he found some commonality with.  It's a good thing.
But yesterday I found myself too busy to sit with him, and act as his interpretor, of a sort.  Those same friends invited him to sit with them, but because there were new people, he was too anxious to comply. So for hours, he was alone in a room of 80 people.  I felt so bad.

Now, Ben hasn't accepted his autism diagnosis since 6th grade, in which time he saw enough of a gift to create a power-point on it's gifts.  He hates it that I am on the Hub, he hates it whenever we bring up what he perceives as his "shortcomings"as a child.  He is also suffering from depression, since seeing the movie "Avatar" and it's make-believe world of Pandora.  Thanks to Michelle Dawson, I now see he saw it not as perfect world, but the world of the Blue people was a world where people of autistic thinking ruled, perhaps.  He saw in the movie all the selfishness and seperation from others, and downright greed that serves as "normal" in this world today.  This world in which the normal people are trying to make people with autism more like the bastards they are. Go figure.

I was so sad, so disappointed with myself for not being there for Ben.  But the good Lord takes care of children and fools, and I figured something good would come of it.  (When you are as big a ditz as me, this  thought gives one comfort...)

I don't know why, but I brought up when Ben was young, and how I had read that there was a 50% chance of him being institutionalized--and only a 5% chance of him living independently. It was bullshit, but I didn't know it at the time. Of all people, Temple Grandin told me in the 60 second talk I had with here when Ben was 7, but she didn't quite put it in those words.

Good Lord, where am I going with this story? (so easily distracted...sorry...)

Anyhow, he let me talk this time.  Maybe the day was so painful, he was open and not on his usual guard. 

"You are a miracle, Ben/"
"You are, you've come so far!"

And I reminded him of the story where he first came to use the pronoun "I".  After getting his diagnosis, I saw a blurb on the news about autistic kids using hippotherapy.  Ben is adopted, and I took it as a sign, knowing his birth mother was so proud of riding horses since she was 3 years old.

Ben used to be so alert after riding on "Cricket".  It was like the world opened up to him somehow.  He had never answered a question directly before when I asked him driving home in the car, "Where do you want to go now, Ben?"

"I want to go to a movie."  I always said we would have taken him to the moon.

He always used to hate it when I tell the part where it was a constant "Iwant...I want...I want...I want.." for the next week until I actually got tired of hearing it.  But, it was a door of sorts, into another world where vocalizations had power.

"I need..." he said, after hearing the story. That's all, just 2 words.

I think we are going into a whole new level.  May the good Lord give me strength, or whoever it is up there who hears a mother's prayer.

Sunday, February 14, 2010

Is SPLD autism, or not? *

Many children with AD/HD, Asperger's, Autism Spectrum Disorders, Non-Verbal LD, Bipolar, etc. have co-occurring Semantic/Pragmatic Language Disorders.

Some authorities see SPLD as part of the autism spectrum of disorders while others see it purely as a language disorder. 


First, we found that though many children with PLI did show some autistic features on the ADI, very few of them met diagnostic criteria for autism on both ADI and ADOS. Furthermore, many children with SLI, who had not been regarded as showing any signs of autism, did score in the autism range on ADI. This further supported the idea that there are no clear boundaries between these different developmental disorders: they shade into one another, and the diagnostic categories are something of an artificial abstraction (though necessary to ensure children get access to appropriate services).

Let's see...hmmm...

It is always necessary to determine whether the client has:

isolated semantic processing difficulties OR
isolated difficulties with the pragmatics of language use OR
a combination of the two OR
semantic pragmatic language disorder (SPLD) OR
SPLD in combination with another communication disorder that is NOT in the autism spectrum, for example, developmental apraxia of speech OR
SPLD in combination with another disorder in the autism spectrum, for example, Asperger's Syndrome OR
SPLD in combination with another disorder that is NOT in the autism spectrum, e.g., Attention Deficit Hyperactivity Disorder (ADHD).

WTF??????  Is it just me, or.......
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