Monday, December 24, 2007

"absurdity and aspergers"

After reading Look Me in the Eye, I was wondering if there was a correlation between absurdity and aspergers, as
there should be.

But there wasn't if you put them in quotes...I wonder if there will be after this post.

Sorry, once again, only amusing myself....

Saturday, December 22, 2007

Ruby Bridges







My husband is the South Carolina state coordinator for National History Day. Many students choose to write a paper, make a board, develop a power-point, enact a drama,etc., on various topics relating to history in order to take part in a nation-wide competition.

That's how I became familiar with Ruby Bridges story. She was a child who helped lead the civil-rights era..."A little child shall lead them..." Her story is one of fantastic courage and forgiveness of the adults who would have rather seen her dead than integrating an elementary school in the 1950's.

Who will speak to this ignorant generation for those who are born with different wiring? When will we stop making school (and life) torture for them and begin to accept that we all "still see the same stars", as Donna Williams sings?

Thanks, abfh!

Sunday, December 09, 2007

Echolalia...too important to forget

Sometimes I come across a blogpost that I wish I had written, so on the mark it is...and I try to leave a reference to it on my blog so I can look it up again another day.

MOM-NOS describes echolalia in a way that could help every person who sees it as anything other than an exquisite way to acquire language. Her description is so simply put forward (ala Albert Einstein "Everything should be as simple as it is, but not simpler) that it shouldn't be missed.

Saturday, December 08, 2007

"Shhhh...Act normal!!!"

Joel, Ben, and I give each other so much shit it isn't even funny...well, maybe a little funny...

From somewhere this expression, "Shhh...act normal!" bubbled up out of his psyche. Now when we are out in public the expression comes up when we are getting a little out of hand. It's always good for a laugh! And then we calm down...

But yesterday evening we went out to eat and FORGOT TO ACT NORMAL!!! For years we have played a game in our living room which amounts to "variations on a theme" and we give points, when we remember, to the person who finds the funniest expression or visually comedic stance. There is always a seed of inspiration...be it something someone said or some absurdity of life come to light, or even like on "Whose Line Is It, Anyway?", some object that can be manipulated for comedic purposes.

Out to eat..oh, yeah...Well, anyhow there was this big metal pizza holder that each grabbed up to see who could come up with the best line.

To me, it looked like those neck braces put on one's head after an accident, to my husband, if a beer was strategically placed, a small child's potty chair, and to Ben...it looked like a backpack. He puts it over his head and neck and starts leaning backwards like the weight of it is going to throw him off and says "Dang, this backpack is heavy!", and I started laughing because I KNOW how heavy those sons-o-guns are.

The waitress was watching us, and says when her daughter was younger and getting out of the van at school, she lost her balance because of weight of the backpack and fell over backwards. She was DYING of mortification and swore to God she was never going back to school.

Now, I don't want to sound cold or unkind...but it kind of gave me the gigs. We take our tiny children and load them up with these humongously full backpacks...Ben's old girlfriend said she weighed hers in at 65 pounds...while still going on about childhood and it's carefree days, etc., etc.

Grownups are so full of it...

Autism Speaks







Dear Mom and Dad

Thank you for helping me
get through school. I really appreciate
all that you did. You know
I was really scared at
the begening of elementary
school. But thanks to you
both I would not be
where I am today. Thanks
for helping me with
my homework and school
projects. I can't thank you
two for all that you
have done for me. And
I will love you always.

Love,
Ben

Sunday, December 02, 2007

SON CURES SELF OF AUTISM!!!!!!!

I have been hanging around the hub, perusing, knowing there is a post for me in the mix of brain I've been dealt.

"OUT OF THE CLOSET, INTO THE FRYING PAN" kept occurring, about my "coming out" at work as being autistic and prone to depression (they were not impressed)...but it just wasn't doing it for me.

Then, my mind kept perseverating on Schizophrenic "word salad" and the "idea salad" this overheated brain was going through and wondering if there was a connection...but, alas, except for this sentence, it was not to be so.

Then, I got it. Five minutes ago it occurred to me that Ben had told me this week he was no longer autistic. Right under my nose, and without my help...the little bugger had CURED HIMSELF!!!!! Honey, this is big news!!!! Perhaps I should contact Autism PFSFTAITK!!!! (Autism Parents Feel Sorry For Themselves And Ignore Their Kids)

I'm wondering if it had anything to do with:

1) My telling him that when he had a child if he had the same difficulties that I did with him, to remember the stories of how he learned differently and apply them, or call me at any time so my grandchild would not have as hard a life as he did.

2) Ben's decision to go into MECHANICAL DRAWING as his choice in his high-school track...yes, in the 8th grade he's supposed to know where he is going, already...

3)Just the feeling of self-acceptance he seems to be going through, thank GOD, right before puberty hits. In my mind, it's not that he's NOT AUTISTIC (kid, how many times do I have to tell you, you learn different...), but that he is NOT DISABLED.

4)The beautiful, if sometimes rocky relationship we've forged, where there are no "sins" of being who you are.

5)Dumb luck.


So there you go, people. Make of it what you will.

Thursday, November 08, 2007

Thanks to Posautive,





THE OTHER HALF...how novel...

I look to signs from the heavens. You could say the good part of Catholicism is so embedded in me...not even logic can dissuade me that coincidences are merely coincidences. I haven't been to church in years...BUT THAT'S NOT WHAT I'M TALKING ABOUT!!!

There is a silly belief that if one says a novena (don't ask) to St. Teresa, the "little flower", one will receive an answer in roses. I got a chain prayer (as us no-brains do...most of them are bullshit)about Saint Teresa from a "fundamentalist" friend. I was wondering what in the hell a fundamentalist was doing touching anything that stunk of papal (AKA, the ANTI-CHRIST!!!) catholicism...I guess the pull is too invincible...

Well, anyhow, like Bev and her 8's, I have an obsession with the number 3 for luck. (The good, the bad, and the ugly; the Father, the Son, and the Holy Ghost; Black, white, and the grey in between; ying, yang, and yahoo....sorry....)

Yes, I'm droning on...

I have tried for 5 months to get along well enough at my present job at an ABA residential "school" (INSTITUTION...schools are not like this...)

And then this damn Maurice Snell saying things in the video that blow my mind...things like,
"I could talk at that time but I didn't want to speak because I fear for others to think that I am a retarded child."


Oh, yeah...the sign from St. Teresa? The maker of the video?

rosebudk

It's just a coincidence.

It's just a coincidence that his parents found people who believed
"Individuals with autism have difficulties in socially engaging people, but that's only half the story. The other half is that people have difficulty relating to them...



Spoken by a Dr.Stephen W. Porges.

Sunday, October 07, 2007







Ben came up with "Carpe Dum", I came up with the 3 Stooges. Shhhh...the T-shirt is a christmas present!!!!!

Tuesday, July 31, 2007

Whitterer on Autism: Word play

Ben also had a fear of death at that age. After a fish burial, and Grandpa D dying, he seemed to get over it. I think he thought if anyone else died, he would, too.

Sunday, July 29, 2007

"-ics" and "-isms"

If you google autism experts, you get 19,000 hits. If you google autistic experts, you get something like 55 hits, many of which are "autism experts" in disguise. It's all a matter of semantics.

The thing about the Hub, there are many autistic experts here. They are experts in realizing the gifts and downfalls of autism. Autism experts pretty much have the "out damn spot" mentality.

It's something about "ics".

American Heritage Stedman's Medical Dictionary - Cite This Source

-ic
suff.

1. Of, relating to, or characterized by (emphasis mine): carbonic.
2. Having a valence higher than that of a specified element in compounds or ions named with adjectives ending in -ous: ferric.
3. Of or relating to an acid: sulfuric acid.

The American Heritage® Stedman's Medical Dictionary
Copyright © 2002, 2001, 1995 by Houghton Mifflin Company. Published by Houghton Mifflin Company.



Dyslexic, Aphasic, Dysgraphic, Dyscalculalic, Ataxic, I'm going to leave now to see if there is an "-ic" for left-handedness, a way of being that is punished (-Icky???) by virtue of being different.

Here it is...

Left-handedness was often interpreted as a sign of Satanic (emphasis mine) influence, and thus prohibited. Many examples can be found in the Christian-Greek scriptures in which the wicked or evil sit at the left hand of God, while the righteous sit at the right hand of God, during the Last Judgment. The Inuit also believed that every left-handed person was a sorcerer.



Okay, now let's go into "-ism"


The first recorded usage of the suffix ism as a separate word in its own right was in 1680. By the nineteenth century it was being used by Thomas Carlyle to signify a pre-packaged ideology. It was later used in this sense by such writers as Julian Huxley and George Bernard Shaw.


Behaviorism, Nazism, Autism (a pre-packaged ideology???), Liberalism, Conservatism, ...




It occurs to me that it was not people, per se, but an "ideology", an academic basis of thought (NT's must have a plan to follow...) that began in Psychiatric circles that led to T4.

I'd rather be an "-ic" than an "-ism" follower.

Has anyone ever noticed how full of sh*t I am? I am almost embarrassed to post these "stream of conciousness" thoughts, but if I didn't, I wouldn't have much to say...

Well, anyhow, I am just thinking of how different my world is, how much less "tragic" (I'm not going there...got to stay focused...) my live with Ben is because of "ics" over "isms"

For shame...maybe I should up my medication....

Saturday, July 28, 2007

Google "autistic experts"

and "autism experts".


Okay, I know it's a lazy blog, but I'm jus sayin....

Thursday, July 19, 2007

T4





My Day Begins

Even though I lack
the strength of lions and their courage,
and am but Adam's fragile rib
graced with a mystical spirit.
I saw
a blazing fire,
incomprehensible, inextinguishable,
totally alive, Life itself.


Hildegard of Bingen


**************************************************************************

What is the opposite of life? What is the opposite of good?

When I was a child, my curiosity was piqued by the Nazi's. Were they bad people? Were the Germans bad people? How could they be fooled, and how could I avoid being fooled in the same way? Pretty big thoughts for a third grader. It's probably why my family referred to me as the "forty-year-old midget" in an 8 year old body.

Not until we once again went to the Holocaust Museum this year, so my husband could see it, did the answer come.




For brevity's sake, I am not going to be fact based, but more opinionated than might suit some. For brevity's sake, I will only consider myself with the institutionalized, who were the canaries in the coal mine. It was with the 3000 children and 70,000 adults that the "final solution" killing machine was perfected.

In the early 1900's, an academic ideology based on Eugenics led to the legalization of sterilization for many handicapped in the United states.

Don't allow the unfit to breed...simple concept, eh?

Hitler, having a life-long fear of the handicapped, decided that not until the country was filled with the hysteria of war, would he begin a plan to rid Germany of the unfit by "mercy killing". He made this decision in 1935. Otherwise, he knew the people would not sanction it, it must be done under the cover of war and in secrecy. Of course, sterilization, which was acceptable in the U.S., began in 1934, long before the war. As always, there is the initial victim, Carrie Bell.

When the war started on September 1, 1939, the machinery to kill the handicapped was in place and... (within a month)...the killings began. Actually, the first martyr was a baby named Knaur whose father petitioned Hitler in 1938 to have his severely disabled son killed. Hitler decided to act, and instructed his escorting physician (Karl Brandt), to authorize the the euthanasia. (It only takes a spark, to get a fire going...). In October of 1939, Hitler authorized a post-dated (September 1, 1939)"authorization"(note: not "law" which would have legally sanctioned the killings and left the killers free from litigation)



It is interesting to note, Hitler chose people who shared the same ideology as he to "man" the killing machines. It began with Psychiatrists, heads of respected institutions, who sanctioned Eugenics. Next, medical doctors, who made the "medical choices" by "scientific" tests, then lawyers (who started noticing their clients falling off the face of the earth)...and police officers who manned the everyday nurses, secretaries, and common workers who normally did the actual killing under the authority of the higher ups. These were not everyday people, THEY WERE SPECIAL PEOPLE, who rid their consciences of blame because somebody in authority told them it was okay! (Forgive gallows humor, it's how the Jews deal with it, so I am in good company. Also, get used to "quotes", and recognize them for what they are: euphemisms.)

So there you have it. The killers were not everyday people, they were SPECIAL!! They were CHOSEN losers who couldn't make it to the top without help, without licking the hand of the Fuhrer! They were now IMPORTANT and tied to a powerful leader!

Of course, the parents and doctors who lived with the children were at the bottom of it...troublemakers one and all...and very few were like Mr. Knaur who wanted his child dead. Therefore, they had to be lied to.

Institutions were forced by law to "register" appropriate cases involving hereditary deformations (harelips, for God's sake), and mental retardation for "clarification of scientific questions." (italics mine) The Reich sent out a decree that explained to them the reason why these listed children were being moved to different hospitals was that the state hospitals were really OPEN WARDS FOR THE EXPERT CARE OF CHILDREN AND YOUTH" ! (capitalization mine)and that refusal to commit the child, once all the facts had been explained, might lead to the Reich to have to investigate whether such a refusal is a transgression to the right to custody. That usually shut them up. And if they wanted to take their children out of the hospital, they were sent to contractual labor, whereby the parent would have little choice but to commit the child.

The neatest thing the Nazi's did? The parents were not allowed to visit the children in the hospitals because the children, of course, would need to adapt to their new surroundings. Even though the children died within days of arriving at the OPEN WARDS FOR THE EXPERT CARE OF CHILDREN AND YOUTH" ! (capitalization mine), they waited a couple of weeks before sending a note home that announcing the loved one had died of some tragic disease. Junior medical experts scrutinized the dead bodies for some believable affliction and lied on all of the death reports. They had to. I have taken the liberty of violating copyright rules, because I can't do justice to the author, Henry Friedlander's words...

The Origins of Nazi Genocide






When we went to Washington, I became very interested in the idea of sterilization and later "mercy killing" of handicapped children, where it all begin. The kids were "practice" for what was to happen later on. CANARIES IN THE COAL MINE?? To tell the truth, it was the first stopping point, where one could sit down in the Holocaust museum. The first time I went, I was drawn to understand it. The second time I went, I realized it was the beginning of the final solution.It had a name: the T4 Operation. I asked the clerk in the book store for a book about the T4 Operation, and the above was the one he gave me. Most books spoke only about the later days, this one served as a guide to where it all began. Strangely enough, it was the study of Eugenics in the United States that served as a scholarly excuse. We, however, did not enact any solutions, as an elite crew of medical personnel in Germany did. I will write a book report, if NO ONE has any objections to it. If it is too painful, I will not. But remember, sunshine is a great disinfectant, and the truth will set you free!!!

I always wondered why the German People let Hitler get away with it. The truth is, Hitler based the whole thing on lies and deception. And used the Psychology heads of Major Universities to do it, and carefully selected the "killers".

%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%

To amuse myself, I often google "images" of autism, just to see what's out there. Today, I happened to notice one of the "code words" of the Nazi's. (This message was below the first picture, although it did not download.)

Autism Spectrum Disorders

Autism Spectrum Disorders (ASDs) may arise from a combination of genetic and epigenetic (environmental) events that result in specific neurodevelopmental problems. These events or “hits” may occur in the genome and thus can be inheritable. The number of “hits” before a threshold or ASD is reached is today unknown. These hits are postulated to occur before (hereditary) and after conception (in utero), as well as in the early postnatal years.

Once manifested, the “hits” produce various behavioral, communication and social deficits that become apparent in the early postnatal stages of life until the child becomes diagnosed beginning at about 36 months.



The incidence of ASDs are rising, and latest estimates are as high as 1/72. Following diagnosis, the parent and caretakers are faced with numerous options for therapeutic intervention. Intervention is a critical issue, since in general the earlier the intervention, the better the prognosis.



A major goal of TIPOgen is committed to identify early markers of ASDs that may be used to diagnose ASDs and prognose the effects of therapeutic interventions, thus reducing the time from “hit” and intervention.


%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%



See those words, therapeutic intervention? We all know what that means. If allowed, I will work on a book report this weekend.

The book was not all horrific, there was a seed of how we manage to avoid another final solution. You may or may not be surprised at the authors summation of how to avoid it. I'll give you a hint: It is happening right here on this hub....

If this has been done before, please give me the links to your own posts in the comments. Although it seems extreme, these are the times we live in, and we all know it is beginning again.

Wednesday, July 18, 2007

FIRE ME, PLEASE!!!!!!!!!

Warning: This is a RANT!

God forbid anyone from work would actually read this rant... It might mean they have some interest in the kids other than what they've been told. I feel like I am being asked to train animals. With no brains. Or feelings. And there are "observation windows" in every room to make sure you are doing it right!!!!!!

Document this, document that, do as you're told, don't make waves...Use the system! (There are two competing ones, which would you prefer NOW?)

I'm not an animal trainer, I'm a God-blessed teacher!!!!!!!!Let me teach, and you all can do whatever the hell you want because in the end, I am only responsible for filling up the kids minds!!!! You've had your chance, how is that Kindergarten stuff working for ya?

Am I the only one who feels there is a terrific waste of humanity here???????????

I'm never going to fit in your little system. I'm a square peg you are trying to fit into a round hole. Good Lord...I know how our kids feel!!!!!

Please, do yourself and me a favor and fire me, and never think again of what might have been...

Tuesday, July 17, 2007

Trusting I'm where I should be...

H. is one of my ten students. His goal was to learn NSEW directions. He copied an unlabeled map of the 7 continents and 5 oceans, and labeled them without my help. He then labeled NSEW. He had surpassed his goal before he started. He knew more than I did. I've told him, twice, that he has a gift. He has asked me a couple of times what I mean by "gift".

I've been told none of the kids have a mind greater than 5 years old. That's bull-ony. H. refused to sing today because he said "that's baby songs" (Days of the week, months of the year, "Good Morning to You", etc.) H. is 18 years old and has a brilliant, if unused mind. I love you buddy!!

I was sent to NCIP class, to learn how to put "safety" holds on kids. (I am SORRY, but it's the G.D. truth). The teacher didn't think I did my job well. I asked another woman there who was as gentle as me, who had worked there for years, if she had ever had to use any of the things they were teaching.

She said, "Never."

I'm not sure I've got the strength to put up with this crap. As long as the heavens keep the doors open to me, I'll be there. Even if it kills me. It's not the kids...

Sunday, July 08, 2007

plf515's favorite joke about Aspergers

A guy is flying in a hot air balloon, and he's lost. He lowers himself over a field and calls to a guy "Can you tell me where I am and where
I'm headed?"
>
"Sure. You're at 41 degrees 2 minutes and 14 seconds North, 144 degrees 4 minute and 19 seconds East; you're at an altitude of 762 meters above sea level, and right now you're hovering, but you were on a vector of 234 degrees at 12 meters per second"
>
"Amazing! Thanks! By the way, do you have Asperger's Syndrome?"

"I do! How did you know that?"

"Because everything you said is true, it's much more detail than I need, and you told me in a way that's no use to me at all."
>
"Huh. Are you a clinical psychologist?"

"I am, but how the heck did you know that??"

"You don't know where you are. You don't know where you're going. You got where you are by blowing hot air. You put labels on people after asking a few questions, and you're in exactly the same spot you were 5 minutes ago, but now, somehow, it's my fault!




If you are looking for this joke on the blog page, it's kind of hard to find. So far there are 128 comments on his post, and it is only 1 among many.

An interesting conversation at Kos

I could spend all day there, but I've got to get some work done today. It is somehow on the recommended list, which means it will probably survive for more than just a few moments. I have seen mcewen's at Kos...maybe other's are familiar. It is a democratic political blog, and there is a lot of stuff I find hard to take, not being dyed in the wool democrat, but there are a lot of people who go there.

Sunday, July 01, 2007

The Short Bus: A Journey Beyond Normal



When Ben was younger, I used to read every book I could get my hands on to understand what he was going through. Jonathan Mooney co-wrote a book called Learning Outside the Lines, from which I picked up the notion of "mental health days" that Jonathan's mother gave to him when school got to be too much. I'm sure there's more, but that one stuck.

Jonathan was a victim of Special Ed, labled dyslexic, and had to ride the short bus to school. Here in America, the short bus is synonymous with disabilities,and thus "less than" children. He went on and graduated from Brown University with honors in Creative Writing and Disabilities Studies, and has set out to change the world for his peers.

With candor and wisdom he takes his own recently attained short bus (named "Bob Henry") across the United States in order to meet a mixed bag of others who learn outside the lines. His voice is a mix of observer,academic, and empath.

I don't even know where to begin...I have 20 pages bookmarked for inclusion in this tome. I'll try to cut it down to three people to give your a sense of the book.

_________________________________________________________________


Speaking of a trans-gendered man, Cookie,who was taken care of,loved, and accepted by the townspeople, he woes the loss of community in the modern world, where people are strangers to each other, and the strange are not taken care of, but marginalized.

This is in Kennebunkport Maine, where the influx of noveau riche attach a level of comfort to having no "others", and the human we speak of was literally asked to "get out of town".

He quotes Robert Putnam, who feels the loss of community is tragic because :
"an impressive and growing body of research suggest that the civic connection helps make us healthy, wealthy, and wise"...(because we)"become more tolerant, less cynical, and more empathetic to the misfortunes of others"...


In this chapter he also makes a critical observation as to why so many of us are outed.

...After World War II, American society began it's economic shift from an industrial economy to a service economy. This brought an unprecedented rise in the social service economy: more shrinks, medical doctors, social workers, and educators. As John McKnight, a community activist and professor of public policy wrote in his book The Careless Society, this social service economy needs people like Cookie as it's raw material. It needs a sick client (italics mine).

_______________________________________________________________


Katie has Downs, and has a Book of Life she created which has pictures of her friends, her work, her school, her family.

When asked by Jonathan, "What is a meaningful life?", she pointed to her book without comment.

"The book of life is just huge, isn't it?" I said to her after she had flipped through most of the pages. She smiled broadly and said, "Yes, it is."


Katie's karma was unbelievably good, and when she suggested things were better if they were done together, especially when jumping on a trampoline, Jonathan realized
"...each of us (used) our weight to throw the other one up higher than we could ever go simply on our own."
>

There is a thought out there that the human condition shows the faces of God, whose "ways are not our ways". Wouldn't it surprise the shit out of people if God was actually more Downs than any other way?


_______________________________________________________________

I've chosen as last the story of a man who refused to be labelled, but Jonathan surmised was autistic. He describes his obsession with his calculator and math; and his attempts to document and streamline efficiently his life.

Before seeing him off,Jeff copied for Jonathan a book of wisdom, which Jeff carried in his backpack everywhere he went. Jonathan confesses he did not read it for months, quite unable as he was to figure out this
...most singular person I had ever met.



In a bizzare coincidence (I'll not divest any more than that...), I have scanned the page from the book to allow you a peek at Jeff's book of wisdom.








Jonathan admitted he has since gone back and read Jeff's book of wisdom 30 or 40 times.

Saturday, June 30, 2007

Things that make you go hmm...








There is no link in google for "what crazy women think about. Sorry...


1) When Ben was around 4 years old, why did he always lay on the same spot on the floor when we went to K-Mart? As I remember, he'd always lay on the same spot and have a little fit. Was there a noise, was it the lighting, did it happen once by accident, but therefore have to be repeated because "that's what we do here in K-Mart" (replaying the tape...)

I've always wondered.

2) When Ben had a good time, instead of "do it again" a few times he said "Go backwards!". I always figured he was rewinding the tape in his mind to "replay" the event. Being a visual thinker, it makes sense. Hmm...

3) Is Ben's "oppositionality" a by-product of his early poor parenting? We didn't understand he didn't understand us, so we used to nail him to get him to do what we wanted. Did he learn you save your sense of self by doing the opposite of what you are asked? (He's not that bad at all now, really, but we used to say, "Ben, DON'T put away the dishes"...and the little shit would start putting them away, even though he was fully aware and a little peeved we had tricked him. He KNEW his own compulsions.)

If we had been more aware and accepting, would he have developed an oppositional stance? Hmm...

4)Do autistics attach a negative emotional response to places that is unchanging? Although he will do it if asked, he prefers not to go to Wal-Mart because we have often had emotional tussles there.

Why am I developing an aversion to Wal-Mart, and only go when the money saved is paramoount? Hmm...

5) Why is it when I hear about some genius actually "suffering" from Asperger's or some sort of "LD", or of someone who is/was possibly a member of this exclusive club, I'm not surprised?

That Nobel Prize guy recently in the news (forgive spelling)
Andy Kaufman
Dan Akroyd
Bill Gates
Steven Spielberg
Leonardo Da Vinci
G.K. Chesterton
(went to a brain doctor at age 9 because they thought he was "slow")
Thomas Alva Edison (too scattered to learn)
Albert Einstein (sister says he was "echolalic", or repeated phrased under his breath)
Charles Schultz
Thomas Jefferson
Charles Schwabb

That "Virgin Records"/air/mobile guy
Jonathon Mooney ( The Short Bus...more later...)
Picasso
Samuel Clemmens (Mark Twain)
Winston Churchill
Ivar Lovaas (my own guess..a rich irony, eh?...Somebody ought to try to beat it out of him...)
Most techies

What do they all have in common? They all thought for themselves and changed the area where they found their niche. Some changed the world!

6) Could Aspergers, LD, Autism, become the new "disease" du- jour? (In particular to Kristina's post, it used to piss me off when they'd say a killer was "dind of a quiet guy" because I was "kind of a quiet girl", and I felt all of us "kind of quiet people" were suspect, just like blacks, the poor, Mexicans...we all were inherently suspect because of the group we belonged to...)here. Hmm..

7) NT's can show love "in their eyes". Why does it seem to me that autistics have to be shown love and show love "with their bodies". When Ben was four months old I told the pediatrician that he wasn't bonded to me because he never looked at me (and he never did until he was 2.5 years). She implied I was crazy because she had seen "failure to thrive" and said, "Look at the way he clings to you!!! When Ben feels he does something wrong, he always wants a hug to know that he is forgiven. He "feels" forgiveness through physical bonding, and always has.

AND, LAST, BUT NOT LEAST (You smart-butts quit clapping!)

8) Why does anxiety seem to be such a part of autism?

Tuesday, June 26, 2007

Donna Williams

I don't want to lose track of this video. Donna's work has really picked up, and I love her new stuff. How I wish I could afford it!

Sunday, June 24, 2007

Humanity versus genius

I just can't let it alone.

I read a book a while back, and a seed was planted in a way that only great ideas can bring about. A good seed planted among the thorns.

I'm sure it was a self help book, as I was "into" them about that time. I have tried to google to give the author credit, but just don't have the time or patience today, so if anyone is familiar with it (ala needle in a haystack style), PLEASE let me know. I think it was a woman, who, like many others, changed my head.

It is a parable of sorts, as all good teaching is.

She gave an example of a boat in which there were three people: Herself, an old man, and a young child, (I'm taking a tremendous amount of creative license here as I can't recall the particulars...) and a painting by a great artist, let's say for my sake, Rembrandt van Rijn. I can't find my true favorite of his, so this may somewhat color the story for me.



She is the captain of the boat, and must stay on in order for the boat to make a safe return. But the boat is overloaded. One of the three (two people or the painting) must go. She must make the decision.

She said there was a time in her life, when she would have let the old man go, thinking he had lead a good life, and a priceless work of art for the ages would be saved.

But because of a change of heart(or head), she tells the story again later in the book and insists that she would ALWAYS choose the human life. There were no ifs, and s or buts about it. ALWAYS.

Do we sometimes choose ideas over people?

Saturday, June 23, 2007

from the Joy of Autism

Sweet Jesus

Thank you Estee. This is all the reading I need.

Friday, June 22, 2007

Be quiet and the kids will come to you

Ben's advice to a teacher who wanted to know the "secret".

I was very quiet as a child...most of us major depressive schitzo-shitzo's are. At age 14 or so I was walking back from a friends house. A boy, tall, lean, and scary, started following me. I didn't know who he was or what he wanted. Mr. Faulkner, our neighbor who I had only waved at before said, "He won't hurt you. He's mute". I never saw him again although I lived the rest of my teen years in that neighborhood. Into my life, and then non-existent.

Taking Ben to the library...a young boy hugs me. He is autistic, his teacher says.

Grass in the wind

When Ben was young, I told his teacher the harder you pulled his rope, the harder he pulled back. It's so DAMN hard to let go of the rope.

Tuesday, June 19, 2007

Post Script:

I'm wearing my newly acquired Autism-hub t-shirt. That out to mess with their minds.... :)

Saturday, June 02, 2007

Emotionalism versus Sensationalism



The word emotionalism came to me this morning, while thinking about the difference between NT's and NNT's. I don't know what I am, but I know I'm definitively "not typical".

Emotionalism is what NTism is all about. It amounts to the ability to be moved, from it's Latin meaning. I think of collective blades of wheat, blowing in unison. It's a beautiful sight to see, having lived in Kansas, and literally gives a visual representation of that which cannot normally be seen, the wind.

Now, sensationalism means to understand by the senses. Understanding cannot be seen, it is as individual as the weeds that staunchly stand up to ruin the unison effect. As staunch as the rebel who refuses to follow the collective line, to "fit in".

While googling for an image of a "weed in a wheat field", I found no pictures of wheat fields whatever. So I tried "wheat field". I starting noticing a lot of Vincent Van Gogh's paintings coming up, such a sensationalist he was! All of them had weeds in the forefront, a prominant place, but this one.

Look very, very closely at the background.





Now I think I know
What you tried to say to me
And how you suffered for your sanity
And how you tried to set them free
They would not listen, they're not listening still
Perhaps they never will

Sunday, April 15, 2007

A Charmed Life?









Ben has spoken with or met the above people.

I know some people have particular feelings towards all, but I was born and raised a democrat, it's my good/poor upbringing, and not my fault. And Temple Grandin's book "Thinking in Pictures" was my bible for years. It was the only thing that helped me hold on to hope when I was told 95% of autistic kids never live independently and 50% lose language. This was before Autism-hub!

I know it's my brag book.

To John Edwards, he said, "Nice to meet you", which he had only just learned in Speech class, and Edwards said, "Well, nice to meet you!" He is looking away because this idiot used a flash.That's Ben's head in the lower right.

To Temple Grandin, when I introduced him, he said, "Momma, she won't look at me!"

"What's your name?", President Carter asked.
"Ben."
"My names Jimmy!"

Ah, the memories...

Pretty good when you consider this kid is a plague upon society!

When Ben was four years old, still not conversing, he had an aide from Guatamala who loved him.
"He's going to grow up to be president!", she told me once.

Kid runs in some pretty big circles for a punk!

Saturday, April 14, 2007

Putting Feelers out for Betty........Individualized technology


I know y'all are empathetic, as per Joel's post (what is it that makes me think "oxymoron" about a post there...snark)....but what I need is so very specific that sending me to dig through web-sites would be no help. I am looking for a needle in a haystack, and am putting out feelers to groups I belong to.

"Betty" can see two inch letter fourteen inches from her face. In order to communicate independently, she needs access to a switch driven super-duper-extra-large keyboard software program. Forget this $14,000 pec's-com device...If you got the time, she's got the mind!










And now for something totally unrelated, probably only understood by us old farts ...
I am speaking directly to one of you when I say"...blessed are the cheesemakers...and all manufacturer's of dairy products." One of you brought up a bit from Monty Python and it just made me laugh to think back....


Wednesday, April 04, 2007

What kind of world does autismspeaks want?


Isn't that special?


I removed the picture...I am wondering if the maker of the video is slowly getting out their true feelings about AutismSpeaks. I think the picture was just too offensive, too close to the real agenda of much of what passes for a "helping" rid the world of autism.

I'm sorry to those I offended.

The other possibility is that the sight has been hacked...

Autismspeaks shows it's true colors "My World"


Was the picture of the child with Hitler a freudian slip up?? He, too, wanted to rid the world of "ballast"---imperfect children.


Diary or ability to predict the future? (Warning: boring)

I often use my posts as a "memory hole" for things I want to, but am unable to, keep in my head. Today, my post will be a diary of sorts, maybe even a horoscope for things I can see happening in the future....

I am, hopefully, leaving my job at the school district to get one much closer to home. Not that I want to leave, I'm sure there is still more I could do at my TMD classroom, but I feel I have accomplished enough to feel good about leaving. I knew at the beginning of the year, with my personality, or lack there of, I might only last a year, so I made it a goal to get all my goals accomplished. And I learned more from my students, and learned more from my aides, than I ever could have imagined. It has been a year of tremendous growth.

But something within me has always been drawn to a residential school (read: institution) for autistics kids whose behavior makes them unable to survive in the regular school systems. Or maybe it's for teachers who find themselves unable to cope with differences. Same thing. At any rate, it's on the school systems dime.

I was always kind of afraid to go there, not sure how I would react to abuse if I saw it. After all, I had spent the entire year in the public school system trying to show the aides what I had learned from autism-hub. I am not perfect, by any means, but what I learned here changed my head, and I wanted to change their heads in the same way.

So when I applied for the job, I was thinking I would have to change their heads at the residential school in the same way. Fortunately, I found the director of the school to be highly advanced in the treatment of humans. I believe I have found another mentor... She is a true mensch (sp?), if that's the correct word for a woman.

The thing is, the school, which was started by parents who wanted a place for their child to belong, has been bought out in the last year by a "for profit" company. Will they be "real", or will they choose profits over the lives of the students, like one sees in hospitals and nursing homes. How will I keep my mentor from getting angry and quitting? She's the heart of the school. Will I have to abide by dumbass policies and procedures like I have in the public school, multiplied by greed? Or have I learned how to "fudge" well enough for the politico's who decide the fate of public schools that I can fake it in a private enterprise? Maybe they are good people after all, and it won't be as bad as I think......................

It will be ten times the challenge of the public school, and I look forward to hearing that "little voice" within that challenges all systems. You know, that one that makes people think smart people are "tricky", when all they really are amounts to lucky guessers.

Life is good. I feel like I am finally using the "brains God gave me" (as my father used to always say, "Why don't you use the brains God gave you???") to leave my own small imprint on the world.

I already love the kids I met, and the teachers I will be working with. I will know in the next couple of days if I got the job. I am making plans of how I will slowly change things for the better, ala autism-hub.

What made me fall in love with my new "mentor" is the "behavioral plans" she had for the kids. There are no restraints other than "sit downs" (time-outs) to get the kids to calm down. I found they worked very well for my students who became aggressive. One student even put himself there, and told me "hush", when I went to check up on him. It wasn't a negative place, but a place to get it together. They use a token system, which made me think "oh, God...", but it was based on reward for positive behavior. There is no physical restraint used unless they are hurting others or themselves, and it is based on a plan that everyone in the school uses, or is supposed to use, that is safety oriented, not punitive. There are always going to be the a------ that get through that are physically punitive, but it is not sanctioned. I don't know what I was expecting, but it wasn't the kindness I saw. It wasn't the acceptance of the kids as they are. It wasn't the strong woman who held all the responsibility for kids being treated like we all would like ourselves or our children treated.

My first "goal" is to talk them into gaining computer access. And then I'm planting one of the kids butts in front of some autism advocate sites. And I look forward to changing his head. There is something wonderful there...the mentor sees it, too.

So, there I go....sorry.





Saturday, March 31, 2007

ballastexistenz


I don't want to forget this post. When I have time I will go back. (I sometimes use my blog as a reference to important material)

Thursday, March 01, 2007

Betty News


I wrote in the past about a student I had, and called her Betty. Today, she had an especially eventful day. We tried the PECs symbol system before, and she never really took too well to it. We made them as large and dark as we could, but she just never really seemed all that worked up about it.

The other day, it occurred to me she had given many signs she could spell. I thought, why not print large block letters on a 2x2 square of all the letters of the alphabet, and put all the vowels on 1 8 x11 page on a color of her choice, along with 5 sheets of all of the consonants on a color of her choice. I told her to get ready, because she was going to spell her first word.

Her mother suggested she choose the color of the sheets, and then the letter she wanted. We went through them once or twice, to show her blue was b, c, d, and f; green was g, h, j, k...and so on. She pointed to a green card, and then chose "g". Then she pointed to a pink card, and chose "i". Choosing the color for the next two pages she wanted access to, she pointed to "r" and "l". The first word she spelled in her life on her own was "girl".

Mom called Dad and told him. He got all excited and told her "good job" and she was tickled half to death. The next word she chose was "s-c-o-t-t", her father's name. Somewhere in here I cried a little.

When her vision teacher came in, we told her and she was all excited. Not wanting to push our luck, but doing it anyway, we asked her to spell Miss Judy's name. She, on her own, spelled "gude", which is good sounding if you use the "g" sound as in "giant". She changed to "j" after a little prompting, and then the teacher talked about "y" sometimes sounding like "e".

I have always felt I gave "Betty" too much input, so I made the other teachers do it with her. I have never seen her have such a direct and unmistakably clear muscle movement, although she does not have good control over her hands, which she used.

It was surreal.

The hour it took, passed like it was a minute.

My God, thank you, thank you, the gentle nudge that led us to this!

Tuesday, January 09, 2007

Open Source Software for AAC users


I joined a Yahoo group that covers Augmentative and Alternative Communication users. They gave this link that some of you may find interesting (it's free).

Tuesday, January 02, 2007

Ben's growth


This is going to be my last post for a while. School begins tomorrow, and with it a schedule that allows me to do little but lurk.

A lot of positive talk about autism deals with our children's growth. Autism isn't equated with stagnation, although other's might have you think different, with their scare tactics meant to cause you enough anxiety to buy into whatever they are selling. They grow, but in a different way!!

I am going to tell you about my life with Ben as I see it; the good, the bad, and the ugly...the ugly mostly being my misunderstanding or anxiety. I have been trying to think of something to leave you with, and this is what I've come up with. Please don't judge the ignorant parts, I only tell you because I know others may have been led the same way, and I don't want you to make the same mistakes.

Ben, age 0-1:

What a sweet angel, a gift from God! We waited 13 years to have a child, and put everything we had up to borrow against to pay the $15,000 to adopt Ben. It was a private adoption as we were too old to be accepted by an adoption agency (37).

I babysat for a family for years before Ben came, and their last child was born 10 days before Ben. After a respite, I had little Maddie growing up right along with him.

At age 4 months, I noticed that Maddie would smile and give lots of eye contact. Ben never looked at me; in fact, while feeding he would turn away to look at the t.v. or the wind blowing in the trees outside the window. It seemed he needed more movement than my face allowed. I went to a program for babysitters where they talked about "holding time", which was a "miracle cure"---the first among many--for children who were not "attached" properly to their parents. I attempted to make Ben look at me...It never worked and my husband made me stop as it made Ben cry. I gave it up, but never forgot. Ben never gave me anything but fleeting eye contact until he was 2.5 years old, and when I went to the doctor at age 4 months with my concern...she told me I was crazy! She had seen children who failed to bond, and Ben was not one of them! "Look how he clings to you!" she told me.

Lesson #1: Children with autism bond in different ways. With Ben, it was physically attaching himself to my body when I carried him. Think about it, carrying meant MOVEMENT, which he enjoyed! My hip was his docking station to the world!

A lot of people read to their children...Ben would not sit still for it, so I sang. It soothed him and put him to sleep, and I enjoyed it!

I just have to add this: We had one of those "jumpers" that you attach to the top of the door frame. He used to go nuts on that thing, like a little bungie jumper, for a half hour at a time, smiling and giggling the whole time.

Ben, age 1-2:

Ben was a late walker. He had frequent ear infections, and somebody suggested a local chiropractor who had helped others. He said it was an allergy to milk, so we cut way back, and Ben was walking within the week at 15 months old. The infections might have been making him too dizzy to walk. No more infections, I kid you not!

He was so cute! He would often ask for me to sing "Sunny Skies". I can still hear his little voice, "su--ee skies". Then he would do this little dance and smile.

He could name lots of nouns: butterflies is one I remember. Sarah, the elderly lady who still keeps in touch, said he was "brillliant".

These were the good years, the calm before the storm.

Ben, age 2-3:

Ben could say the "Our Father" at this age. I remember it distinctly as he always said, "Deliver us from eagles". He could sing "You Are So Beautiful To Me" and make grown men cry.

We were growing concerned because he didn't always answer to his name. We went off to have his hearing tested at age 2.5, but he would not sit still for adequate testing, so we put it off for a while.

It wasn't until my sister-in-law told me Ben reminded her of a child she had babysit with autism, that it came back into view. After about a month of denial, when I was ready, I took this info to my doctor, who had a daughter with Downs.

"I think he's PDD", he said, and suggested a MRI and EEG, which both turned out negative but were very difficult to obtain. I thought "PDD", with it's "developmental disorder" was the new way of saying he was retarded. I became very depressed, but at the same time looked up all the information I could at a college library computer. It seemed like overnight my "brilliant" child became "retarded". Fear and anxiety consumed me. I was sure it was up to me to "heal" my child. My college degree was in Special Education, and I had a life-long interest in biology. I was meant to have this child...

Mmmmh....I think this is going to have to be an installment...

If I'm boring the hell out of you, or being too offensive, please let me know.

Natalia, if you are around, try contacting me at rosewalker1 "at" cs.com



Autism Blogs Directory