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.

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