Saturday, December 29, 2012

Snow and Life Both Deceptive

     Snow I love and hate. It is so beautifully deceptive. It covers the ugly barrenness with a blanket of white, looks so perfectly pure in its never touched state. But appearances can be deceiving. To walk in snow requires caution for slippage. It is slippery and unstable as a foothold.

     My life is ugly like the barren trees sometimes, but it is still stable underfoot in soul. A beautiful life is sometimes not all it seems either, whether it is filled with money and things or just everyday busyness it may still be a slippery and unstable existence. Sometimes I want to trade my life for another, but then I see the snow and think about it, and I decide my life is not so bad after all. I have God and family who love me.... and right now, I also have an expectation of coffee. Life always looks better with a cup of coffee in hand.

Wednesday, December 12, 2012

Christmas - A Valuable Reason to Work at It

     Old events remembered often bring up negative emotions for me, so I am going to write about only good thoughts today.

     Christmas is coming.  It is a good thing in our house, but overloading too.  This year I hear my Mom say "fifty family".  They all come for Christmas Eve dinner.  A special meal and prayer it is to celebrate respectfully the birth of Christ; and too, to remember our loved ones who are no longer this side with us. I love the occasion as a gathering of love and traditions old, but it is not an easy day for me - sights and sounds abound, touching all about, intentional and nonintentional, movement required to join and avoid others actions, waiting incessant, emotions to be absorbed and processed, communications to be translated, smells to be endured.  It is not just a nice gathering for me. It is exhausting work, only made valuable by the reason for the day.

Christ camer into the world so simply.  Let the meaning of that speak for itself.

Tuesday, December 4, 2012

Acceptance Is Never Too Late

     Today I asked my Mom if I should question her judgment in telling me I am "magnificent."  It has not always been her message.  I guess autism is a process of growth for both parent and child.  Just as I had to grow into my personhood, she had to grow into her parenthood. 

     The child who starts with acceptance is extremely lucky.  More often I think it starts with parents like mine.  I know they love me now, but they were more the enemy back then.  I only wanted to escape the onslaught of the world back then, too much it was.  If I had been surrounded by peace instead of turmoil the world may not have been such a scary place for me. 

     My Mom is a "do it" person.  Patience she needs to work on.  In some ways this was good.  I could do in motor for her what I could not do for myself or others.  It caused her to believe in me when I did not.  It also caused me to hate her. 

     Anger was my motivation for a long time; to not become a puppet.  I understand compliance as important, but it also teaches lessons better left unlearned.  It makes you afraid to initiate beyond what is asked of you.  Fear of failure is a compliance creation in part; to sit and be released on positive responses only is what does it.  Lessons in autism frequently transfer by association. Positive reinforcement as a word but not practice, negative reinforcement that only serves to heighten an anxiety that already screams for relief - this was my invitation to the world.  

Take a child whose senses have already deserted them and expect them to learn in this environment; this is your ABA, the real lessons you are sometimes oblivious to.  It is why I say learn your child. To pay attention to their discomfiture is a gift you give yourself.  It saves them and you from having to walk each alone through the process of growth.  A path shared is a positive journey for both parent and child. 

Mom and I crossed paths more often than we shared them.  We became a team much later, but the damage remains in emotional memory response for me.  To write sometimes revisits it. 

Knowing I am "magnificent"  in her eyes now, not because of anything of I've done, but simply because I am helps a lot.  Acceptance is important. It can never come too late.  

Friday, November 30, 2012

A Person, Not a Cause

     A ribbon that is a puzzle -  Is that what I am in your language of symbolism?   Who makes this stuff up?  A ribbon signals a cause.   A puzzle you put together to make a whole picture.  Is that what I am to you, something to be pieced together to completion like a puzzle?  Whatever the intent, It reflects your approach.
Questioning, a question mark,  for autism I would understand, but a puzzle and a cause?  Not even a person do they use in the symbols.   Our autism is the only focus, not the child who deals with it.  Autism should not rule personhood nor be an excuse for you to ignore it. We are children first.  The ethics of that gets lost in the ribbon of your cause.  I am not a puzzle to be pieced together. I am blood and breath, a living, breathing organism, not a broken object to be fixed.
      Make sense of the world for me, that is what I needed.  Treat me as valuable and loved.  Touch me with respect for whatever are my issues. Know my behaviors have purpose and carry meaning. Recognize my intelligence as not reflective in my sensory dysfunction.  
      Ask yourself for whom you grieve.  It will tell you for whom you act in treatment.  Help me, don’t seek to eradicate my underlying nature.  There is value in everything in God’s creation, even autism.  Don’t start out in a panic.  It is a journey you embark on.  A puzzle brick road that takes you home to a person  I see as a possible symbol, but then I love Bill, so a puzzle brick road speaks of love to me .
The symbol needs to be redesigned, preferably by an autistic individual as artist .  Our identity should not be reduced to a cause, especially one that denies our underlying personhood in its symbols.

Wednesday, November 28, 2012

Making Your Child a Partner in Autism

Understanding sensory processing makes for an explanation of my autism. Senses translate the world. Injured senses misinform. My response is what you call autism.

Senses work both alone and together. Multiply the senses by their parts and it equals a plethora of possibilities in autism. Stims often reflect the autist's sensory reality as different. Learn what we experience as a way to reach us. Understanding puts us together at a start point.

Forgive me but I hate all knowing experts who know nothing of my processing. It is irresponsible treatment to go at autism blindly. Like a sloppy effort it yields a sloppy result, a damaging outcome. Children are turned off and away from the world you seek to have them understand and join. Lessons unintended are taught – things like failure, confusion and inconsistency. The world is capricious, unyielding, and hostile to the children of autism. You can be our guiding light or persecutor depending on how you approach us. Only taking time to learn about us will forever save a multitude of sins against us. No one knows this better than I.  I am a child of sensory dysfunction, the "severest of the severe" Mom says. The good news is growth is always possible. Lapses show themselves. Corrections and compensations can be developed. Much of what you see in our autism is just that, our own systems attempting to adapt for what’s missing. But false premises yield poor adaptations – like my walking on tip toe to avoid being swallowed by the earth.  Only it is my life’s work to adapt for what my body fails to do. But lesser impairments may be addressable in a shorter time span for others.

But this writing is not supposed to be about sensory dysfunction. It is actually about common sense in approaching treatment. We are not an experiment to be tried. My humanity is one thing that should be treated always as sacred. Learning that encroaches on it is ill conceived. Learn to teach. Teach to my strengths. Use my strengths to teach to my deficits. It is a win win,not a win lose, you seek to succeed.

Only too know my intelligence can shine through one time and become lost in sensory confusion another. Cause and effect learning requires consistency of response. The light I know will always respond consistently to on and off. Not so my sensory learning. This is obvious to me now; not so when I started. Navigating the waters of sensory dysfunction eases our learning and lives. Autism is not about intelligence. It is about performing in an inebriated state most of the time, making sense of what is nonsense to us,  trying to see through muddy water to find the fish hiding behind the rock. It is all these things at different times. Your understanding does not make clear the water for us, but it offers bait for the fish.

Friday, November 23, 2012

A Letter to Parents from an Autistic Child

    Today you learned your child is autistic.  He or she is the same child you loved yesterday, the same child you will love tomorrow.  Remember that in all things autism.  Be careful the autism does not become your identitiy.  Only your child can decide if it is their identity, whether it is who they are.  Your acceptance is everything.
     Acceptance is not idle.  It strives to meet potential without equating potential to a modification of soul.  To cope, adapt and circumvent, is different than to change underlying nature.  To have your child fake response and personhood is a fate worse than autism.  It hides them from both others and themself.  Becoming neurotypical is a common goal for parents of aspies and autistics.  It is by far the most damaging thing you can do to us. 
     I understand your reluctance to embrace autism, but don't turn it into a reluctance to embrace your child.  Acceptance is the most important component of treatment.
     I live and love even as an autist.

Wednesday, November 7, 2012

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.

Monday, November 5, 2012

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.

Friday, November 2, 2012

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.

Friday, October 26, 2012

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.

Thursday, October 25, 2012

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.

Wednesday, October 24, 2012

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.

Monday, October 22, 2012

God Around Me - I Love to Walk

     I love to walk. There is something calming in repetitive steps. I especially like to walk with Dad. We go up into the field, sometimes deep into the forest even. To walk with Dad is freedom. He always takes his camera and I can wander about on my own within sight of him. His is a visual pleasure and mine is an auditory one. Each sound is so clear in its isolation. Geese gathering, grass whispering in wind, tree frogs chirping, and sticks cracking (though I am not supposed to break them and it costs me my string when I do it). The wind sings in my face. It blows cool and with smells delicious - someone is burning leaves or fresh mowed hay sometimes. Sometimes I even see things I can enjoy. A brightly colored balloon takes a pass now and then with passengers. I wonder at how it steers itself through the sky. Rainbows we’ve seen. And once or twice, lightening on the horizon has called us quick to home. Dad captures it with his camera. And me, I capture it with my heart and soul. It is God speaking to us, much of it. I take him in and breathe easy knowing he surrounds me.

Friday, October 19, 2012

Empathys Definition Misplaced in Autism

 I hear a lot about autists as lacking empathy, and by strictest definition you might be right about it. It is easy to empathize with someone who shares your physical reality. Autists don’t share a neurotypical reality. Neurotypicals are no more able to empathize with me as autistic, than I with them. But I recognize a different definition of empathy. It is God's "Love your neighbor as self". It far more important to look to see the underlying point of empathy - Compassion.

I think all emotion is processed through the amygdala. I know mine is definitely affected. My emotions are exaggerated and delayed. I absorb the emotions of all around me like a foul stench. I feel all you feel at times with you, but that doesn't mean I understand it. I can't even interpret my own emotions at times. It stands to reason if my amygdala is impaired, then too others may be impaired; and others still, may not be. But emotional sharing is not the source of compassion, love of God is. I would be a fool to empathize with my tormenters, yet God requires I forgive them. It is my love of God that yields forgiveness. My attention to his tenets that breed sympathy and compassion for others. Empathy is nowhere in my equation, unless it includes autists of like affect.

How do you judge me my lack of empathy when yours is equal? You lack empathy for autistic individuals all the time. You grieve not for them and their struggles, but for your own loss. It is why treatment is directed toward neurotypical functioning. Treatment  should be about developing an autist for coping skills in a hostile environment, not changing their nature.

Love is the true source of compassion not empathy. Empathy may be unique to like species. The fallacy is in the pairing of our species, autists and neurotypicals. I feel  the fear and joy and anger just like you do, I just don't feel it for you. What I do feel for you is sympathy for your misdirection and forgiveness for sins against me as autistic.  That takes an act of compassion, and an understanding greater than empathy.    It requires accepting in others that which is not understood and  God's wishes for loving them anyway.

Thursday, October 18, 2012

Waiting in My World of Autism

Happenings are relatively rare for me so I have to find pleasure in the mundane - food is one example. Tonight I pleasured on Rice Krispie treats. Tomorrow it will be something else. Small things are huge to me. Not so different a theme from my senses. Everything is larger in my autism. I "wait" as a torture, like sitting in a traffic jam on the way to something wonderful it is. The frustration it causes is almost overwhelming. At times it seems to breathe for me, taking over all bodily function. I force the air through at slower pace. I hear the command to "take deep breaths." "Only a moment at a time" asks my heart. Its steady beat reassures me time is not standing still. It keeps me from self-destructing in overload. Time passes and my reward follows. So what you ask is so monumental to me? - waiting on my morning coffee.

Wednesday, October 17, 2012

One Autistic Experience - Life on the Other Side of Typical

Ok, here we go again. Mom is pushing the independence again and I might as well make it productive. Quiet I have been yet I am thought filled still. To "say it because you feel it" I don't always understand or agree with. Sometimes there is far too much voice, far too little listening in the world. To simply ramble seems pointless, yet we seem to connect through the ramblings of others sometimes. Blogs are ramblings at their best... and sometimes worst. To see the self appointed experts sometimes angers me. Living it and living with someone who lives it are two different things. Each has a voice unique, but when the later tries to speak for the former untruths abound. I speak for me, just me. My knowledge is limited to this body alone. If anyone tells you a different story they are selling you a lie. Parents need to learn their child not someone else's. I speak for me alone as one autistic experience - not yours. Life on the other side of typical has its moments good and bad. "One at a time" seems the order of my life; one sense, one movement, one thought held tightly against a background of chaos. We strive for meaning in our lives. Nowhere is that more true than autism. All of the over selections you speak of and teach to, all of the stims and perseverations we engage in, seek to put meaning to our lives. I am an autist. I have learned this word is a meaning unto itself. But I am also an individual and it is our individuality which holds the key to our connectedness. This is true for the entire spectrum of humanity. Our needs and strengths entwine us one with another. We are each teacher and pupil both. Nowhere is this more questionable than raw autism. You need look for your lesson to see the true spirit of the individual before you. Is it unconditional love, acceptance, patience, perseverance, or just understanding God's plan is not your own? Each of us, all of us, has a purpose. It is God given and it is unique just like their autism, just like your neurotypicalism. Typical is a facade. I am not typical. Neither are you.

Tuesday, October 16, 2012

A Glimpse of Normality Today

A small pleasure I had today in watching my speech teacher watch me succeed. What is so interesting is not a matter of what I succeeded at but the fact that I registered us both at the same time. Several years ago I took an Interpersonal Communications course all about interactive communication. The only problem was it did not reflect my communication apparatus. I am single modal on input and output. To attend to you is to lose myself as a feedback. But today I saw us both simultaneously. I have never experienced that before. It scared me at first. Mom kept asking "what is wrong". Then it heightened me to overload, but it did not extinguish the experience. It is a new experience I hope repeats. It is another breakthrough for me I think. Teaching me would be so much easier to like. I love glimpses of your existence.

Monday, October 15, 2012

My Personhood Survives

Thank you for comments reminding me that a blog is not an abyss. I once thought to make a difference with my voice, but it is not a matter of always the speaking, but sometimes the listening that is the true key to successful communication. It is disheartening to find and fight for a voice only to have it ignored or discounted as false by the very people you need to service you. I would have given up the effort if not for my mom's insistence that I try and try again to assert myself in independence. Sometimes what is in your best interest can be painful. Like surgery it is to dissect and accommodate all the hurdles of movement for me. Most recently I am learning to use two sides in opposition. The key is often not to think on it. Instead I picture the end result. I am learning to do what you do in mass. Questions I have for all of you. Do you just see it - the end act? You act so quickly the planned actions I must do. To move my body to a sculpted form I think it through now, the contortions, like moving a mannequin in my mind it is. Then I put the end equation in my locked memory. Lots and lots of movement entries there are. I learn them all. To watch someone do it is not to form it. I make them puppets in my mind, and then I make me a puppet. I am puppet and puppet master. I am not myself, but I am still the master of my movement. That is the most important thing - to not be dependent on other's movement to initiate my own. I am my own person. One way or other I will do it.

Tuesday, October 9, 2012

I Am Absent With A Reason

For me, the written word is just a lot of hearing myself speak. On one level, it is a release. On another, it angers those who do not believe appearances alone speak an untruth at times. It is ironic that the easier it becomes for me to type is also the easier it becomes not to. My oral words will never meet my eloquence in typing. The words do not flow with the same ease, but they are undeniably me... and sometimes, to ask in voice for a cup of coffee is enough.