My Frustration Overwhelms at Times

     I am at a no help needed point in my real skills at typing but my frustration overwhelms. Mom says it is a required skill as credibility goes but it angers me to force myself to do it. She thinks she forces a good thing; that teaching independence in this yields far more than independent typing and communication. It may yield initiation in other areas of motor, the activities of life. She may be right in it, but it makes the work no easier to know it. My breaks are back to words apart. I break myself on stupid mistakes so Mom knows to backspace. She calls my letters as they appear for her on screen – to late, because I already know my mistakes. I have to fight the urge to lash out at me for my stupid body. “No cause for frustration," she says. It is my overload I feel. Just so much at once to move it is. It is my life I fight for I know, but like rehab it is, coming back from a stroke; you do not see the ends, just the struggle at times. I breathe deeply and start again.


Message from Mom:

For Carol, Tina or any other OT that happens by,

I need to improve the stabilization in Mike's shoulders and typing arm. Would repetitions lifting a light weight help?  Any suggestions you have would be more than appreciated. Feel free to submit in comments. Thanks.

Approaching Treatments in Autism

     Satisfaction takes years to achieve in autism.  It is not an easy fix.  It should not be a fix at all but a growth, an integration of two worlds, autism and neurotypicism.  Man is not man, just as Neanderthal is not Cromagnum.  Altered brains equal altered minds, altered behaviors.  Whether autism is seen as evolution one way or a defect the other is not important. What is important is recognizing the difference in structuring your approach and "treatment".  To approach autism from a neurotypical mind set automatically yields failure.  You need only read this blog or Behavior Policing's Effect on Autistic Children to know our minds take in information differently.  To see it differently is to come to altered and sometimes misguided conclusions.  I say sometimes, because sometimes too I believe our conclusions are very right.  Instead of teaching us to understand neurotypical thinking, you seek to make us neurotypical in our own thinking.  It is not a matter of symantics.  The first I find highly effective, very helpful to my functioning; the second, disparages me mind, body and soul. 
      You love your pets, but would not expect your cat to act like your dog.  As autists we have different natures, but we can still learn to live companionably.  My mother is my primary teacher.  It took her years to learn the difference. She is not alone in this sin.  That is the greatest danger of it.  If I could impart one valuable lesson to those starting the autism journey it would be this -  See the world through your child's eyes before judging behavior as bad or good. Teach lessons in understanding not punishment.  And love, truly love, your child just as they are.  It is counterintuitive perhaps, but it is the surest path to developing them to be all they can be.

Orientation Through a Card Game.

I am happy. Today I learn my hands through solitaire. Orienting is a huge problem for me. To turn a card and place it is like surgery. I remember Carol tried to teach me the skill with weighted cards. It was a brilliant idea, but my system was not ready to do it. Well today I succeeded at it. Readiness is sometimes more important than your programs of learning. I am ready for many pieces of learning. Swim is the answer to my indirectly learning what I could not do directly. Today I was ready for this.

Identity and Ethics in Autism

     There is much political infighting in autism with the only true losers being autistics themselves.  As an adult I can decide what is the truth for me.  And that is the point.  It is an individual truth.  The fact that I spent years debating it with myself speaks to the notion that there is no easy set truth.  Temple Grandin says autism is not her identity. It is her life's passion she identifys with.  I am autistic first.  Everything I do and feel flows from that.  Is Temple right?  Am I?  Why can we not both be right as to our individual experiences. 
     In autism there is a plethora of possibilites of effect and affect.  What is unethical is to judge one autist by another.  For some, autism is a splinter that can be eradicated. For others it pervades their entire being.  What is unethical is the grouping of us as a single whole. 
      I detest ABA and consider it unethical as applied to children whose underlying sensory systems can't support it.  As to another it might have been fine.  As to me it was literal torture.  What is unethical is not the ABA in itself, but the failure of experts to attend to where they are applying it. Is it still recommended across the board?  I don't know.  I don't follow it anymore.  What I do know is an autist's responsiveness is detectable.  You can discern learning styles in therapy and thereby identify underlying dysfunctions.  I can't use vision to cue motor.  Many autists solely use vision to cue motor.  Each has a pattern of response.  Individual attention yields appropriate manners of teaching.  The scripted program, while useful to some, are highly detrimental to others.  It is unfortunate I fell into the latter group. It colored my thinking, attitude and yes, identity for years.  I would have been lost to the world entirely, but for Bill Stillman who showed me another way of being through his being.
     Small things hold tremendous meaning in autism, even as large ones are lost.  Identity and ethics are too significant to leave to happenstance.  It is foolish to fight when there is so much more that can be accomplished through teamwork.  I stand as an example of what not to do, and as an example of what can be achieved when errors are recognized and put aside.  and I have eons to go.  What is remarkable is not where I've been, but the fact that I continue to grow inspite of where I've been.

I Feel Better Today

     I feel better today.  For me the days are longer than my nights.  I sleep late to shorten them.  Life is slow without my swim.  The car was totalled several weeks ago and it has made prisoners of me and Mom until it is repaired or replaced.  I used to live inside myself quite happily.  Now, it is all I can do to keep from going crazy inside my house outside myself.  I pace and stim and music play, read and eat and type.  It bores me all.  I think I want to start school again.  Pat says there are free online courses I can take; maybe some Math or Psychology or even Writing, if it is slow enough for me to keep up in it.  In typing I am much faster than before. We can type at the computer now without Mom seeing my keystrokes. She pushes me ever further to initiations of self.  It is good and bad.  To do it is good. To want to do more than my current limitations is bad.  It is a marathon being run by a sprinter that tires easily and looks for the finish line too soon. Mom needs to know I am tired sometimes.  Living challenge everyday wears you out, not just the parents, but autistic children too.  I will continue the race, but sometime I wonder at my opponents.  Are they my autistic limitations, parental demands for social functioning beyond my ability, or society as a whole?  Opponents you try to beat.  How much easier it would be as a relay run with teammates.  But the structure of treatment remains a conflict for control.  If you believe otherwise then you must be on the neurotypical side of it.  I am on my own side now, just trying to cope with a hostile environment called the world at large.
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Music is an Escape

     The music blasts.  My senses absorb the sound as a life unto itself.  Loud, vibrant, alive it is.  For me, it is a window of escape from my monotonous life.  What does a dead body do to feel life?  Each moment is an excruciating eon of time with far too many short lapses from boredom.  To live, you need to experience in doing mode.  I am an observer of life, too affected to participate in any but the the most mundane of activities.  To play a game of ball, or run a marathon, or do one of any number of physical activities is beyond my motor abilities, so I sit and picture myself doing them in my mind.  Autism can be a cruel lifemate and I am feeling sorry for myself today. Tomorrow will be better.

Forgive Me Rain

     It is raining today.  I both love and hate the rain.  I love the melody of its sound - light like a whisper or heavy like a drum roll.  It speaks to me.  Mom says a good rain is cleansing for the soul.  I feel it as God's tears poured out on us; in lightening, some times his anger too.  He voices in ways that replenish the earth and nourish growth. God speaks to us through nature all the time ... and I feel guilty when I am not inclined to listen.  I want to walk or swim and he interrupts my plans with his rain.  I am an unappreciative child some times hating my interruption of plan.  Today is one of those days. Forgive me.