Thursday, December 31, 2009

Happy New Year!!!

Ben was busy looking up the words to a familiar song.  I copy and paste it here for your pleasure! For those of you who choose to, raise a right guid willie-waught with us at midnight!!!!

Robert Burns: AULD LANG SYNE


For auld syne, my dear, [old long ago]

For auld lang syne,

We'll tak a cup o' kindness yet,

For auld lang syne.

Should auld acquaintance be forgot,

And never brought to min'?

Should auld acquaintance be forgot,

And days o' lang syne?

We twa hae run about the braes, [hillsides]

And pou'd the gowans fine; [pulled/daisies]

But we've wander'd mony a weary foot,

Sin auld lang syne.

We twa hae paidl't i' the burn, [waded/stream]

Frae morning sun till dine, [noon/dinner-time]

But seas between us braid hae roar'd [broad]

Sin auld lang syne.

And there's a hand, my trusty fiere,

And gie's a hand o' thine,

And we'll tak a right guid willie-waught, [goodwill drink]

For auld lang syne.

And surely ye'll be your pint-stowp, [pay for]

And surely I'll be mine;

And we'll tak a cup o' kindness yet

For auld lang syne.

Sunday, November 08, 2009

Does a mother "know" things?

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

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

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

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

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

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

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

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

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

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

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

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

Wond'ring Aloud

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

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

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

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

Wednesday, November 04, 2009


Saturday, October 24, 2009

Self-injury and affect regulation.

I am currently obsessing on self-injury---especially among studies that doen't neccessarily include autism or intellectual disabilities.  Abfh is right.  There's a lot out there.  It is a very common phenomena.  I thought the following gave a logical reason for it--to ease bad feelings (negative affect).  With a synopsis of 18 other studies, the author concludes that it helps them feel better (aka affect regulation function). 

1: Clin Psychol Rev. 2007 Mar;27(2):226-39. Epub 2006 Oct 2. Links

The functions of deliberate self-injury: a review of the evidence.Klonsky ED.

Department of Psychology, Stony Brook University, Stony Brook, NY 11794-2500, United States.

Deliberate self-injury is defined as the intentional, direct injuring of body tissue without suicidal intent. The present article reviews the empirical research on the functions of self-injury. This literature includes self-reports of reasons for self-injuring, descriptions of the phenomenology of self-injury, and laboratory studies examining the effects of self-injury proxies on affect and physiological arousal. Results from 18 studies provide converging evidence for an affect-regulation function. Research indicates that: (a) acute negative affect precedes self-injury, (b) decreased negative affect and relief are present after self-injury, (c) self-injury is most often performed with intent to alleviate negative affect, and (d) negative affect and arousal are reduced by the performance of self-injury proxies in laboratory settings. Studies also provide strong support for a self-punishment function, and modest evidence for anti-dissociation, interpersonal-influence, anti-suicide, sensation-seeking, and interpersonal boundaries functions. The conceptual and empirical relationships among the different functions remain unclear. Future research should address the measurement, co-variation, clinical correlates, and treatment implications of different functions.

The picture?  I remember Bettleheim and his comparison of autistic children and Holocaust survivors.  I came across info that children who survived the Holocaust were referred to as "Les Enfants Terribles" , which was also a title of a book written in the 30's, that was made into a movie and  a play...but that has nothing to do with what was said.  Following is an excerpt from a website teaching children about the Holocaust from the memories of adults who were finally able to give their stories, the stories of survival, from when they were children and prisoners of Nazi camps.

They tried to resume normal lives, but they were very angry children and were called "les enfants terrible." Once they destroyed all their furniture in their dormitory. A doctor told them that it would be best for them to try and forget all that they had seen and to move on with their lives. Robbie thinks in retrospect that this was the right advice at the time. No one wanted to listen to their stories, and in any case, he felt it was too difficult to explain. Those who continued to dwell on their experiences and the fate of their families ended up in psychiatric hospitals.

One day, the survivors of the present day "bedlams", present day "death camps" may no longer be able to tell their stories. There has to be a better way.  When I was raising my son, praying over him in a hope that he would change....the heavens spoke to me that it wasn't him who had to change...IT WAS ME!  The kids being "treated" (little different from any other type of selfish prayer or shamanism, in some ways....) today do not need to change.  We have to change how we see them.

It doesn't just happen.  It's work...soul work.

I just go on and on and on, don't I?

Okay, here's the last tangent.  Remember "Spit Boy", who I hope I lovingly introduced the last tome...or tomb, I'm not sure.  They all seem to run together...

The one time nana-nana-nana-nana-nana-nana-nana-nana SPIT BOY! came to school without medication, he screamed almost the entire time. And I remembered this morning that on that day he kept biting himself constantly and crying. It was as if he was in a war zone, being constantly bombarded! We were used to ornery smiles. His medication was ritalin, I'm not sure what that means, but I'm pretty sure it was. How it kept him out of the war zone, I can't imagine.

You know, it is so hard to keep a focus.  I hope you'll forgive me.

Friday, October 23, 2009

Empathy or Evil, I don't know.....

Watch out...I am putting it out there.  I may tick some of you off. I will try not to make an ass of myself! I'm just trying to understand.
I was so worried about Aspie-Web-Net.  At least we know he is alive.  What he was going through was horribly hard on him. I have been so depressed before I could have cut my wrists, in fact, I was thinking the yesterday that know I know why people cut their wrists.  Not because of the depression, per-se, but because your blood feels so thick, like it might be suffocating you.  I've only been that depressed once in my life, and it was  years ago, before Ben.
Just thought I'd let y'all know that, so my post wasn't mis-perceived.  Thanks, Ed. My brain is like a train---once it gets on that track and moving forward,  there's no changing direction.  I was obsessed that someone might die.  I don't even know Aspie Web Net.  But I'm glad he's alive. Depression is not a nice companion at times.  It is so 'effing' intense..

So, anyways, the other thing I have been obsessing about this week is how to change the "meme".  I'm sure you got the memo from Autism Speaks.  Autism is a MONSTER.

 And all I can think about is how  parents can use "self-abuse" and it just stands out there like the elephant in the room.

  It's why Lovaas nearly got away with murdering the soul.  (God knows...) He could say," look here" and justify abuse so much so that his methods hit the pages of a major publication, and he's a god-damn hero....Like a child who is beaten  into submission, you may not see the behavior you are trying to extinguish, but you have created something much worse because the child has two choices. The abuse will come out against others or against him/her self, unless they are blessed with great courage.  Abuse is not discipline, just like rape is not sex.

And I got to thinking about when I wanted to cut my wrists, to let the blood out, to ease the pressure.  I felt like my body was in a vacuum chamber, and the cutting would have only allowed the air back in.  It wasn't really to die, per se, but to obtain relief.  I don't know if I'm making any sense to you all.  I'm just saying, the only time depression nearly took over my was as though dying wasn't even a part of it, I just wanted to relieve the pressure!! 

Autism, it seems, can bring everything into hyper-arousal.  Thoughts, feelings, sounds, sights, smells, tastes...can be perceived as crushing, maybe, or like depression, just intense to a degree people who don't go through it may never understand.. And the impulse to relieve the pressure must be great. I think this is what is misperceived by parents.  It's not to "get even" or punish them,or even oneself.  It's just that the intensity begs relief.

I'm sorry, Kristina, but I think of Charlie.  That damn mask would have been suffocating to me. 

Ay, I'm full of it.

I remember a child who was in my PMD classroom.  I have been thinking of him every day.  "Spit Boy" sent the school in a tizzy because he would spit at people in order to be left alone. He had damn good aim, and could shoot it across the room, and he would just laugh as teachers scurried to get out of his way.
One day his mama forgot his pills, and I saw the suffering he truly went under. He shook, his overstimulation was so intense...he spit constantly, and there was no laughter.  He had a fear in his eyes like he was being overwhelmed, and his very life was at stake. He didn't cry, but he guarded himself as though the world would engulf him.  It had to have been exhausting for him, it was exhausting to witness.

Since I have been on the Hub, since I worked at a "institution", I have tried to understand self abuse.  This is the only time I have come close, in remembering something that happened 20 years ago, and only consisted of a few hours of my life. I'm sure there are many, many more examples in my life, but this one crystalized.  It's a good thing nobody reads my blog....

Wednesday, October 14, 2009

Richard Attfield and FC (Facilitated Communication)

I initially entered a blogpost about facilitated communication. There were many skeptics who personally knew as much about facilitated communication as Marie, my beagle, but they DID know that it was not backed up by science. And so they simply dismissed it.

To me, few had anything, anything of value to say, except Larry---champion of the Underdog, and Richard Attfield, who spent most of his life wasting away in special ed classrooms until he learned how to get his mind out via facilitated communication at age 15. (He could not speak to communicate.)

He had help to direct his hands (weakened by Cerebral Palsy), and keeping on task. He now has sufficient strength/ability to type on his own, and fights to have other people realize that facilitated communication is a necessary step for some to type on their own, and the only way others can put their thoughts out. He is fighting the naysayers, as he has been fighting them all of his life.

Why should I care? Because of Paige, a student I had in the PMD classroom my first year of teaching. Until 2 teacher aides started teaching kids in the class to read, they had never been exposed to learning. Paige showed me some things, and in talking to her mother, we are convinced she is an average kid. She has a normal mind, and a very, very, very uncooperative body, like Richard, because of Cerebral Palsy.

Paige, dear, if you ever read this, Richard is just as kind and good as Kirk, remember him? You might have Mom read his story. God love you always , I will never forget you, and one day may get my rear in gear enough to figure out the next step, where we need to go next.

The picture above is the front cover of the book where Richard and others discuss  their facilitated communication.  All have at one time used it, some still do.  And people try to say their lives are lie because there is no science behind it.  To me, that's just rude.

Friday, October 09, 2009

Thursday, October 08, 2009

Hope Springs Eternal

Hope Springs Eternal:

 "Hope springs eternal in the human breast;
Man never Is, but always To be blest:
The soul, uneasy and confin'd from home,
Rests and expatiates in a life to come.

-Alexander Pope,
An Essay on Man, Epistle I, 1733"

I always wondered where that expression came from.  I was rather surprised to see the whole expression.  Before my father, the wild-ass whiskey drinking son-o-bitch died, he told my sister Teresa he was going "home".  If Rags said he was going home, you can bet your bottom dollar it exists.  I miss you, Daddy. You worked your ass off when you were here, you deserve a rest.  See you someday, hopefully not too soon!

Love, Rose

PS: Help me to help Mom.

Saturday, September 26, 2009

Love versus Fear....Bible Study for Autismspeaks!

Bible Study for Autism Speaks:

Fear hath torment. Because it fills us with forebodings.

NIV© There is no fear in love. But perfect love drives out fear, because fear has to do with punishment. The one who fears is not made perfect in love.
NAS© There is no fear in love; but perfect love casts out fear, because fear involves punishment, and the one who fears is not perfected in love.
ISV© There is no fear where love exists. Rather, perfect love banishes fear, for fear involves punishment, and the person who lives in fear has not been perfected in love.
GWT© No fear exists where his love is. Rather, perfect love gets rid of fear, because fear involves punishment. The person who lives in fear doesn't have perfect love.
KJV There is no fear in love; but perfect love casteth out fear: because fear hath torment. He that feareth is not made perfect in love.
AKJ There is no fear in love; but perfect love casts out fear: because fear has torment. He that fears is not made perfect in love.
ASV There is no fear in love: but perfect love casteth out fear, because fear hath punishment; and he that feareth is not made perfect in love.
BBE There is no fear in love: true love has no room for fear, because where fear is, there is pain; and he who is not free from fear is not complete in love.
DRB Fear is not in charity: but perfect charity casteth out fear, because fear hath pain. And he that feareth, is not perfected in charity.
DBY There is no fear in love, but perfect love casts out fear; for fear has torment, and he that fears has not been made perfect in love.
ERV There is no fear in love: but perfect love casteth out fear, because fear hath punishment; and he that feareth is not made perfect in love.
WBS There is no fear in love; but perfect love casteth out fear: because fear hath torment. He that feareth, is not made perfect in love.
WEY Love has in it no element of fear; but perfect love drives away fear, because fear involves pain, and if a man gives way to fear, there is something imperfect in his love.
WEB There is no fear in love; but perfect love casts out fear, because fear has punishment. He who fears is not made perfect in love.
YLT fear is not in the love, but the perfect love doth cast out the fear, because the fear hath punishment, and he who is fearing hath not been made perfect in the love;

Friday, September 11, 2009

Dialogue in the Dark.

Ben and I got free tickets to go to Dialogue in the Dark in Atlanta, and discovered what it felt like to be totally blind for one hour of our lives. We went through a series of rooms, each portraying a common venue: one was a grocery store.Dependent only on our hearing, sense of balance, touch,smell, and our white canes, which we had been taught how to use...and our beloved guide who we came to trust more than any of us had probably trusted any stranger in our lives.

A group of 8 of us were led through a series of what seemed like winding paths, but I'll never know because my sense of direction was gone except for left and right. Walls were comforting! We tried to listen for others voices so that we didn't run into them, was like "Keep talking so I know where you are!" Ben and I kept grabbing on to each other, we hoped! Once, the little poop says "Excuse me, ma'am!" in a deep voice as I grabbed an elbow and said "Is that you?" I could have died as other's laughed. It was kind of funny.

In the "store" our guide asked if we could tell where we were, as he did in each room. Shuffling with our canes and feeling out with our hands to try to grab on to something familiar, hopefully not another person, we picked up apples, onions, lemons, cans of food, and what one man described as what he "hoped was a carrot"! And each time the guide led us through the next door.

At this point, I was getting tired of not being able to see. I wanted to say, "Somebody turn on the lights!", but knew we weren't done. The end was the most surprising. Our guide was totally blind, and answered any questions we had about blindness. We, who take for granted our sight, were dependent upon a man who had none.

I've been through little "empathy" sessions before. We put vasoline on our glasses and got around in wheelchairs in a nursing home to sympathize with the plight of the old. But we weren't dependent on them. We didn't "look" to them for help.

Way too cool.

Monday, July 27, 2009

Front Page Atlanta Journal Constitution

Jonathan King, who played ball in his earlier years, was 13 when he hanged himself in November 2004 in Gainesville.

How we got the story (from the article--Rose)

Details on Jonathan King’s enrollment at a Gainesville psychoeducational school and his suicide there came from court records, school documents obtained by his family, and interviews with his parents and their lawyers.

A reporter also examined inspection reports of psychoeducational schools by the Georgia Department of Education, legal filings by parents of children enrolled in the schools, federal and state reports on special education programs in Georgia, and a history of the state’s psychoeducational schools by the director of one facility.

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