Saturday, September 25, 2010

Who is this?


Friend or foe?
Not that it matters much to me, but why are so many ex-hubbers on this list?  Curiosity killed the cat, but...

Saturday, September 18, 2010

ABA-FREE World


Dear Ben:
I don't know about your teachers, what they did or didn't do to obtain your cooperation.  All I know is Mr. Butler could get you to do anything...and I don't think he ever said a word to you...just treated you as you wanted to be treated, I guess.
You wrote once on autism punk, and a teacher asked you, "How do I treat my students?" and you said "Just let them come to you..."

That's like ABA on opposite day...Normally, it's always in your face, telling you what to do, taking notes of non-compliance.  Just as life must seem to you at times. I know I often make you feel "less than", and I'm sorry.  I'm still learning.

Because of the Hub, I felt like the sole parent who wasn't interested in politically demanding ABA treatment for Autism at the Family Connections meetings in South Carolina.  I just sensed it was wrong, that it was filling the pockets of idiots, you know?

"Just let them come to you."

Why are we afraid of that? 

Thursday, September 16, 2010

The Trial by Existence.


Ben:

Your dad bought me a book of poems by Robert Frost one of our first Christmases together.  I'd never come cross this one in my education, but it knocked me out, and it's the only poem I've ever tried (and failed) to memorize.  I know you love Farenheit 451...if I could, I would "become" this poem.

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



Robert Frost (1874–1963). A Boy’s Will. 1915.




22. The Trial by Existence





EVEN the bravest that are slain

Shall not dissemble their surprise

On waking to find valor reign,

Even as on earth, in paradise;

And where they sought without the sword 5

Wide fields of asphodel fore’er,

To find that the utmost reward

Of daring should be still to dare.



The light of heaven falls whole and white

And is not shattered into dyes, 10

The light for ever is morning light;

The hills are verdured pasture-wise;

The angel hosts with freshness go,

And seek with laughter what to brave;—

And binding all is the hushed snow 15

Of the far-distant breaking wave.



And from a cliff-top is proclaimed

The gathering of the souls for birth,

The trial by existence named,

The obscuration upon earth. 20

And the slant spirits trooping by

In streams and cross- and counter-streams

Can but give ear to that sweet cry

For its suggestion of what dreams!



And the more loitering are turned 25

To view once more the sacrifice

Of those who for some good discerned

Will gladly give up paradise.

And a white shimmering concourse rolls

Toward the throne to witness there 30

The speeding of devoted souls

Which God makes his especial care.



And none are taken but who will,

Having first heard the life read out

That opens earthward, good and ill, 35

Beyond the shadow of a doubt;

And very beautifully God limns,

And tenderly, life’s little dream,

But naught extenuates or dims,

Setting the thing that is supreme. 40



Nor is there wanting in the press

Some spirit to stand simply forth,

Heroic in its nakedness,

Against the uttermost of earth.

The tale of earth’s unhonored things 45

Sounds nobler there than ’neath the sun;

And the mind whirls and the heart sings,

And a shout greets the daring one.



But always God speaks at the end:

’One thought in agony of strife 50

The bravest would have by for friend,

The memory that he chose the life;

But the pure fate to which you go

Admits no memory of choice,

Or the woe were not earthly woe 55

To which you give the assenting voice.’



And so the choice must be again,

But the last choice is still the same;

And the awe passes wonder then,

And a hush falls for all acclaim. 60

And God has taken a flower of gold

And broken it, and used therefrom

The mystic link to bind and hold

Spirit to matter till death come.



‘Tis of the essence of life here, 65

Though we choose greatly, still to lack

The lasting memory at all clear,

That life has for us on the wrack

Nothing but what we somehow chose;

Thus are we wholly stripped of pride 70

In the pain that has but one close,

Bearing it crushed and mystified.

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




Every line has a special meaning to me, but I am often reminded of:

The tale of earth’s unhonored things 45




Sounds nobler there than ’neath the sun;

I see so many people who don't see what heroes they are...they commit astounding  acts of kindness...that go totally unnoticed by their peers, but are deeply appreciated, life-changing,
in ways that no-one but the objects of their Loving-kindness will ever know.

I'm thinking of people who give up their lives in order to take care of aging parents, who don't deserve to die alone in enormously expensive warehouses for the elderly or infirmed.  "Important" people have the luxury to forget their parents...and give them the "best institutions" money can buy!

I don't know if you can appreciate this now, Ben, but you probably can.  You tend to "see through the clutter" and call bullshit pretty easily.  But there are still negative stereotypes and prejudices that cause people to dismiss those who are powerless or poor.  Yet, I think they hold the "heart of God" and keep it alive and beating in this cold world. Were it not for them...

Do you rememver Chandra, who works in maintainence at Daddy's job?  She's the gal who was born deaf, but it was never discovered for years.  She was always treated as mentally retarded before then. She had something she wanted to tell me yesterday, that she had become a grandmother!

Usually, I can't understand her, but yesterday every word came out clear as a bell...I was watching her lips  (yeah, I know, go figure...) She was talking about you and her 17 year old daughter who I found out was her baby, and she went on to tell me she had 3 more children, and their ages.

 Then she mumbled something about they just came along,  but then she said, "I just couldn't kill them.  They did't ask to be born in this world."

I doubt that she was ever married.  She had to have been poor as hell all her life. She is black, deaf, and poor, as archetypal a background for a woman seeking an abortion as any I've ever heard.  All her children still live with her.

"How disgusting!" the worldly say. You know they do...they invented the words that cut to the bone.

"My grandbaby's four months old...I'll have to bring the pictures so you can see her!" 

"Yeah, I'll see 'em next month when we come to class." I tell her

"I'll give you one then!" she says, and I can see the pride in her face as we say goodbye.

"Yes, you do that.  And every time I see it, I'll pray for her.." I say, even though I'm kinda agnostic.  People who are this strong, this kind, just kinda bring out my fledgling faith.  They NEED God, not the other way around.

We can think we own the world, that we are above others, and  be "thank GOD I am not like that man!" Pharisees. But me and Robert Frost know better.

No, wait:  That's God, me, and Robert Frost.

Thursday, September 09, 2010

The Greatest Gift


The greatest gift you can give to your child is a happy childhood.
(Overheard on Today show interview a few moments ago...)

Wednesday, September 08, 2010

There's nothing wrong with Ben.

WHAT??WHAT???ARE YOU CRAZY???

This drama mama nearly destroyed herself trying to smack reality in her family when they insisted on this mantra.

I didn't understand the wisdom of that mantra.

A child needs an advocate, not a critic.

(Picture is "World's most complicated signature", by Ben Walker)

Just comes a time when you think..."He is perfect!"

What an ease it must be to your child's heart when this is how you approach him.




There is this thing, called "self-esteem".   I can't imagine you get it from behavioral exercises, drugs,  institutions...if no one believes in us, can we believe in ourselves? If no one loves us, without us following a certain prescribed notion of "human" or "capable" that has little in common with who we are, can we be truly human? Who decides???

One thing I have learned is that there are two worlds.  One is of illusion...it's found in books(Diaganostic and Statistical Manual????) and "experts" and "goals" and  what "should" be and money and sacrifice and heroes and villians ...and then, there is the messy, complicated, wondrous world full of love and caring and acceptance and joy, and it's in the heart, not the head.

My head told me all the things that were wrong.  My heart tells me all the things that are right.

Sunday, August 29, 2010

What is essential is invisible to the eye...



Link to Morton Ann Gernsbacher's short article by clicking on the above link.  She is on page 10-11, I believe, and this was written 6 years ago.

We are "like babies" when it comes to autism, as Neytiri would say of Jake Sully in AVATAR, Ben's favorite film. We are punitive, rather than doing the hard work of grown-ups.  Rather than see in whole what is before us in the autistic child, we punish the parts we don't like.

I've seen the magic of seeing what is inside a person who is unable to communicate the richness within, probably because of the Hub and especially Amanda Baggs. Paige, who is severely compromised by Cerebral Palsy, allowed me into her world when I taught a PMD (Profoundly Mentally Disabled) classroom. Turns out she is "profoundly physically disabled" to the point of having NO reliable form of communication.

It is magic, like "shock and awe" to the psyche. You are forever changed...

For my son Benjamin, it wasn't quite as apparent, as there was so much fear and denial and just goofy stuff mixed in. But the "universe" or God or even just my heart spoke to me:  "The really smart ones start off different".  They have less in common with "normal" or average than they do with those deteremined to be at the lower end of the the bell curve.  Probably because few ever come back from visiting that country without pre-determined ideas left untouched.

I hope this isn't too confusing.  I feel as though I'm babbling.

Thursday, April 01, 2010

Clever google





Topeka:
I often say if Ben was drugged or cured, I would miss his cleverness.  He can make me laugh easily,  For him, it is a survival mechanism, as he told our doctor:  "Mom says if she wasn't laughing she'd kill me!"
Duh...ya got that right, ya little sh%! I love the word clever, I really do. It's a slight step above just plain old funny.  Funny with brains.Funny, with a twist.  Funny straight up on the rocks with an olive garnish.
So anyhow, this morning I am getting online and I see "Topeka" instead of "Google"...WTH??? The mayor of Topeka, tongue-in-cheek, changed it to "Google", Kansas. So google changes their name to Topeka. Good PR move for both of them.



We've lived in Topeka... Yeah, we saw the wrong Reverend  Phelps and his family and their "God hates fags" signs  all the time.  They lived in their compound just down the street from us.  Why is it that so many cults use religion?  So, I figure, beings as I just came across a speech written by the wrong Reverend Phelps's son, I'd link to it for those who might be interested in the bastard's self-righteousness.  Kinda puts it all into perspective.  The guy's just a plain old egotistical mean bastard who likes the spotlight.  This is Nate Phelps memories, and the reason why he is now an atheist.

The bible says that whats done in the dark will be shone in the light.  Sunshine is a great disinfectant. It also says that those who harm or mislead the little ones, might be better off to have a stone wrapped around their neck and be throne into a lake of fire, than be judged for their deeds by God.


So anyhow, don't let anyone tell you that nothing good comes from  Kansas.  There's us Walkers, especially Ben, and the mayor.  At least.

Saturday, March 20, 2010

I Think in Pictures, You Teach in Words:*


I Think in Pictures, You Teach in Words:



The Gifted Visual Spatial Learner  (Note: all quoted from this link)

     Every few years, this post finds it's way into my psyche...I really should study the whole thing, just to see what's up.  For the first time, I noticed this morning that they are speaking of talent development.  I'm homeschooling, but I'm at a loss as to where to go with Ben.  It's like a dead end street, teaching as a public school teacher would, because, well, in truth...if you take a look at the article...it's NOT the way he learns.  It would be an exercise in frustration, the same as school was.  I'm thinking....THIS is why our kids are singled out, whereas in the past, they weren't recognized, just thought to be "slow" maybe. Schools can't take much more.  They are, by design, only meant to teach a certain type of child.  They can't take responsibility for not being able to teach certain children.  It has to be the kids fault.  Luckily, for them, most children can obtain an education from them so it confirms their viability.  Unlucky for the kids who don't fit their mold.
     This article describes Benny to a "t", his gifts, which are creativity, humor, sense of space, wholistic thinking, associative thinking....everything a school tends to squash. His "deficits", basically, pen and paper drills, which make up 90% of school.  Makes me think maybe his biggest deficit IS the public education system.  I will not lie:  when I recieved my degree in Special Ed, I couldn't wrap my little mind around visual thinkers.  I was hoping I wouldn't have any in my class.  I would bet my bottom dollar that a good share of kids without mental retardation in special ed classes are visual thinkers.  Too bad for them.

     I'm thinking now, that I can be quite a hypocrite.  I'm singing the praises of my child's unique learning style...while a part of me would be relieved if he could be "healed" of it's difference.  Why????  Because it hard, and a lot of people with autism can't survive alone, as a person of a more typical nature does without trouble.  Maybe it's shame that he'll be "on the county dole".  Or blue collar.  He has always voiced a fear of being homeless if he can't produce. I've been raised classist, as well as racist, the child of a wealthy (eventually) business owner educated in private schooling.  I remember the day I let go of my racism...It was literally "washed away".  I need to "wash away" my doubts in my son.  He's going to take the road less travelled, not by choice but by nature.

     Well, anyhow, I have quoted parts of the article, just to give you a sense.  See if you recognize your child as I did mine.


The following characteristics will help in the identification of gifted visual spatial learners. However it should be noted that not all gifted visual spatial learners will match all these characteristics:


Likes complex ideas and tasks and does well on them, yet often fails at simple things

Is physically sensitive, often has acute hearing and intense reactions to loud noises.

Poor listening skills, often seems not to be listening

Has difficulty finishing tasks/school work

Has poor handwriting or difficulty keeping in the lines or grips the pen very hard and presses on the paper when writing

Loves Lego, puzzles, jigsaws, computer games, television, making things
Likes art and/or music
Has a poor sense of time

Is extremely sensitive to criticism

Is emotionally very sensitive

Has difficulty with spelling/times tables

Can remember the way somewhere after going there only once

Has a vivid imagination and/or disturbing dreams

Is distractible
Is very disorganised.


Here is a comparison of Left-brain versus Right-brain thinking.  While trying to be an artist,  I read the book above, and learned that us artist "wanna be's" can develop right brain thinking in order to see as an artist sees by performing special exercises.  I wonder...do any of you know, are there "left brain exercises" one could do?  Of course, it could make one more "whole -brained", which I haven't found to be to my advantage.  Anyhow, I never could live in my right-mind, only visit, so I never became an artist. 

Left Brain Mode

Verbal: Using words to name, describe, define

Analytic: Figuring things out step-by-step and part-by-part

Symbolic: Using a symbol to stand for something e.g. the sign + stands for the process of addition

Temporal: Keeping track of time, sequencing one thing after another

Rational: Drawing conclusions based on reason and facts

Logical: Drawing conclusions based on logic: one thing following another in logical order

Digital: Using numbers as in counting

Linear: Thinking in terms of linked ideas, one thought directly following another, often leading to a convergent conclusion



Right Brain Mode

Nonverbal: Awareness of things but minimal connection with words

Synthetic: Putting things together to form wholes

Concrete: Relating to things as they are at the present moment

Nontemporal: Without a sense of time

Nonrational: Not requiring a basis of reason

Intuitive: Making leaps of insight, often based on incomplete patterns, hunches, feelings or visual images

Spatial: Seeing where things are in relation to other things and how parts go together to form a whole

Holistic: Seeing whole things all at once; perceiving the overall patterns and structures, often leading to divergent conclusions

(Springer & Deutsch, 1989)

************
Whereas left brain thinking is step by step linear thinking over time, right brain thinking is an holistic system where all knowledge is interconnected in space. When left brain thinkers are asked the answer to a question, they will look for the right answer based on the facts at their disposal.




When right brain thinkers are asked a question, they usually respond with some form of “Tell me more/it depends”. As all their knowledge is connected, they can see many paths to differing answers and they want more information to help them decide which path to take to the required answer.



This divergent thinking is the hallmark of creativity but may not be understood in school where achievement is often seen as having the right answer. As Jeffery Freed says “Because one of the attributes of right brained thinking is a non-sequential divergent form of thinking, their minds often veer into unusual and different territory.



This can result in illogical or often unsubstantiated conclusions. On the other hand, they may view a problem from an entirely different angle, leading to new breakthroughs and discoveries” (Freed, 1996, p16).


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


The last quoted bit from the article follows.  I will try to correct the html, but may just make a mess, which would make me sad, because THIS is where I recognize Ben's way the MOST.  It's right there in black and white.


The following table lists the strengths and weaknesses of the visual spatial learning style.




Strengths                                               Weaknesses



• thrives on complexity                         • poor auditory memory, does not

                                                             remember three step instructions



• systems thinker                                   • difficulty memorising facts; poor at

                                                               subject areas that

                                                               equire  rote  memorisation

                                                               e.g. biology, foreign languages



• high abstract reasoning                         • struggles with easy material

• loves difficult puzzles                            • poor at calculation

• keen visual memory                             • difficulty learning phonics

• creative, imaginative                             • difficulty with spelling

• good sense of humour                          • low word recognition

• better at mathematical                          • performs poorly or not at all on timed tests

analysis than computation

• better at reading comprehension           • difficulty learning mathematical facts

than decoding



• better at geometry than algebra            • inattentive in class, easily distracted



• better at physics than chemistry             • disorganised, forgets details



• fascinated by computers,                      • hates drill and repetition


especially computer graphics



• avid television watcher                         • "forgets" written homework assignments



• loves music                                           *  submits short, sloppy work of poor quality

• day dreamer - rich fantasy life                • handwriting laboured and difficult to read



• elaborate doodler                                  • impulsive, tends to act first and think later



Source: Linda Silverman (1997)
Now, I could say, "How did they know my son?????", except I had a student in special ed 20 years ago who had almost exactly the same thinking style.  Same weaknesses, same strengths.

This stuff fascinates me...hope I can learn from it.

Monday, March 01, 2010

Fragile X study


Click on the title link to be directed to an article regarding the research going on at Emory University. Dr. Jeannie Visootsak, who is running the clinical trial at Emory’s Fragile X Center, remarks “This is the first time we are looking at treatment. I never thought we’d be here today. It’s amazing.”
Fragile X Syndrome is not autism, but 5% of autism is caused by FXS. The numbers for autism among people with FXS range from 10-15%. according to the NIMH
.
The story in the AJC article was kind of sad, remniscent of a book that I read years ago.  The young man who is receiving treatment (possibly, it's a double blind study) is of the hope that the pill will "make him smarter".  Flowers for Algernon , a novel, was written in 1958 and tells the story of a man undergoing a transformation because of medical treatment...  will science fiction come to life in this case?  We won't know for years. Yet, there are many cases in the present where medical science has changed the lives of those predisposed to neurological conditions by replacing missing chemicals or by changing the environment to avoid condition specific teratogens.(Epileptic seizures due to pyridoxine deficiency, although rare, are known to occur. They are characterized by untreatable convulsions during childhood. Phenylketonuria (PKU) is a rare condition in which a baby is born without the ability to properly break down an amino acid called phenylalanine.Wilson's disease is an inherited disorder in which there is too much copper in the body's tissues. The excess copper damages the liver and nervous system. )  To say that we must accept all cases of autism as being a "way of being" and "untreatable" doesn't take into account these conditions.  It does, however, set up parents to open themselves up to shamans who disregard medicine in favor of "woo".






Ben was tested for Fragile X.  In fact, it was the only genetic testing we could afford.  It was negative, when we received the results at age 8. We couldn't afford the testing for Tuberous Sclerosis with an out of pocket expense of $3000, although I considered it a possibility.  The geneticists felt it wasn't necessary, that if Ben had TS, signs would eventually show up in his teens.  Many parents only become aware of their own TS when their children manifest the signs earlier, or to a greater degree.

We were not searching for needles in a haystack.   Our psychiatrist suggested that we send Ben through the USC School of Medicine Center for Disability Resources at the Midland Campus, a center which he was instrumental in founding. (Dr. "Luke" is extraordinary.)    They specialized in Developmental Disabilities, and it was there that Ben was given the label of PDD_NOS.  It also was noted that his skin contained birth-marks, both strawberry and cafe au lait, vascular malformations that can be indicative of medical problems, such as Tuberous Sclerosis and Neurofibromatosis. (TS and NF are two conditions that can cause autism in some individuals.)

I don't want to encourage people to think there may be a cure for "autism", there are probably hundreds of factors involved, and as many reasons for the autistic mind. In reality, I love Ben the way he is, and wouldn't want to change those things I love best about him, and it would make me very sad to see his quirky sense of humor leave him.  If he was cured of that..if it was my choice, I'd say "no thank you". But, he can communicate with me.  He, for the most part, is able to avoid overstimulation so it doesn't paralyse him or cause him to act out without the ability to reel himself in.  I don't have to consider institutionalization. I don't have to consider an early death because of the medications he takes or doesn't take.

I'm not about to judge any parent or child who sees hope in this study.

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!!!!

.

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)




BY GOD, IT IS OUR CHILDREN FAILING THE SCHOOLS!!!!!!

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/"
"Bullshit!"
"You are, you've come so far!"
"Bullshit!"

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.......

Thursday, January 21, 2010

Extra Info on House/Senate Bill



/Dear People:
Click on link above, Extra Info on House/Senate Bill   for some good stuff if you have time.  I was reading an "examiner.com" homeschooling Atlanta area Mom whom I love...and a cross link was given to the Atlanta Special Education  "examiner.com"
If you want more info, please give her a visit.  I have not even had time to read it entirely, but it seems like a gold-mine just from first glance. I don't even know her name, but the title of the post is 10 Minute Activist! Keeping disabled children safe from harm in school -

Forgive me, sometimes I have to make a choice between starting a post, or waiting and taking a chance of forgetting all about it. 

Truly yours,

Space Cadet Rose

Two Wrongs don't make a right: H.R.4247/S.2860 Contact Legislatures.


Click two wrongs above to get ASAN's message about the House/Senate bill for the "Preventing Harmful Restraint and Seclusion in Schools Act".
I just got finished calling.  Luckily, the first Senator's education division person was not there so I spoke to the machine.  It really helped me to chrystalize what I think the problem is, at least in this wee little mind.

I have known all along that some forms of restraint are sometimes necessary, in a humanitarian way.  To help a child avoid causing harm to himself or another child, I probably would be guilty of using a restraint that must be documented.  In fact, I was nailed once, because even though I was trained to know better, a child began hitting the wall with his head, and not thinking I put him in a basket hold.  His grandmother had to be called, the SRS notified, and it had to be documented.  I was glad the system worked...you can believe I NEVER tried that again.  But my intention was never to harm "Noah" (real kid).

My fear was never that kids would be harmed by teachers who had been trained, who always had the student's protection in mind, but that short tempered people would use violent practices to put fear in the heart of the kids.  I saw this happen, too, because some people were short tempered, ill-trained, or just figured the kids deserved it.

School systems, institutions don't want to see H.R.4247/S.2860 pass, not because it doesn't serve the needs of the children, but because it may make them liable in a way they haven't been.  Special Ed teachers are always in short supply because it's hard to find someone who wants to devote their lives to children who may not ever be a star by the world's standards.  It's difficult, physically and psychologically.  Parents in special ed can be extraordinarily unrealistic and demanding (been on both sides of that fence...)  Then you get to the pay for aides, and add the same stresses...Often times less than perfect people are allowed to fill the posts in hopes that someone better will come along.  All mistreatment must be kept quiet, less the school/intitution be in jeopardy.

WHO ARE WE PROTECTING:  the child, or in the recent case of Zakh, the teachers (physically) or school (finacially)??  It's THAT SIMPLE!!!!!!!!!!!WHO ARE WE PROTECTING???????

Lets let a pedophile into a day care center.....it's no different than letting a child abuser into a school/institution.  THE KIDS ASK FOR IT, DON'T THEY???

Sweet Jesus, what bugs me the most about this is, WHO ARE THE GROWNUPS SUPPOSED TO BE?
Do we abuse handicapped kids because of behaviors they may have that are beyond their own control/understanding, or do we be the grown-ups, and find ways that save the dignity of the child, the personal space they need to grow...We all make mistakes, but there are a WHOLE LOTTA DEATHS  going on in special ed programs. 

It ain't right.  That's all I got to say...'scuse my shoutin'....

Monday, January 18, 2010

tHiNk!




"Without personal boundaries, there is no way to experience your own identity and no way to measure your worth... "  Ed Ised


  Thanks Ed.
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