Wednesday, October 7, 2015

What I learned from Martin Pistorious

I am going to plead with my very nice friends who are reading this blog now to be patient with me for a bit.  I just listened to a most awe inspiring talk on the site TED.  I usually don't listen to talks by people I never heard of because I fear a misunderstanding event that will cause me some frustration.  I sometimes misunderstand a term or subject that mom or coach may believe is simple for me.  This usually occurs in more modern type events with words that may have two meanings and I don't know one of them.  However, I could not stop listening once mom began the talk.

I never heard of a man named Martin Pistorious.  He is now someone I must meet.  I and my Mom must somehow find a way to talk to him in person.  The talk he gave on TED was as if someone had read my mind but he was speaking.  How could a man who is not autistic like me describe my feelings.  How could he talk about what I think or thought sometimes?  How could he say now exactly the words I use when I describe myself minus the part about me being female?

Just to describe him, he got some type of terrible infection at twelve years old.  He quickly became like my friends I have, unable to walk, talk, use his own body to feed or change himself.  He became a silent bystander in his life rather than the boy who was the physical master of his body.
As a very limited non-speaking autistic, I can relate to his descriptions to how he would be inside his body screaming to get out.  I relate completely to his lack of trust in the world where you are brought to caregivers by your beloved parents who believe you will be safe to only be yelled at, ridiculed and worse.  I understand the desire to wish for the monotonous days of boredom to end and praying for a way someone will finally see you are alive inside, hoping to be pulled out of your own inability to communicate so another person can understand you.

I feel that some people seem to misunderstand that being ok with the fact you are autistic may not mean you don't want to progress in certain ways.  Can you understand I am very happy I am able to talk with my hands?  I can talk to you now.  But I want more.  I want someday for people to understand more words that I say.  I won't go to any doctor anymore that I don't believe in.  I may never go to a doctor for talking.  mom says I am able to choose this now because I am able to communicate.  She says she may always read, but I am the owner of my body.

When I was 19 I began to talk like this.  I am now a high school graduate and taking courses at my local college.  Mom comes with me and I have friends, but I have a goal of being dropped off for a class like other students.  Maybe someone would meet mom at the parking lot and make sure I walked to class and not the cafe.  But, I know I must work on certain issues before I am ready.  I am with college accommodations, but I know what I feel I can accustom myself first.  Just as I have done before.

My point, to my autistic friends so dear to me, is I have been confused by what I have been reading lately.  I read that Facebook has sites condemning autistic people and I hear lies about us on the news.   I read posts on Facebook I don't understand.  When I first wrote my blog, I was so excited to meet other autistics.  I even met some of you in person.  You are my mentors.  You are my role models.  I am still looking to you to help me be in this world when it is hard.  So that was why I was so surprised to hear Mr. Pistorious' talk.  How could he know how I have been feeling?  He said things only my mind has said to me.  I hope you will watch his TED.


Thursday, July 30, 2015

chips and cheese and salsa

Chips and cheese and salsa. I love you so.
Just as I am thinking the night may soon descend,
The call for your tasty crunch plagues me.
How to resist, must I convince the lady to my left that my need may indeed create a brilliance I will display tomorrow on my test day.
Chips and cheese and salsa.

Wednesday, April 1, 2015

Autism Acceptance Day 2015....Here We Go again

Tomorrow I will wear purple, not blue or red.  For all my friends who may know, April 2 is called autism awareness/acceptance day. I am autistic. I am,dare i say,not as nonverbal, but still pretty much.

I am still typing to communicate. You can believe or not. As I type, I am fighting fury and rage that threatens to shut down my ability to continue. i am so angry that autism speaks still does not put any one of the most incredible autistics on their board. I am advocating to autism speaks...please know whether we speak as autistics with our mouths, our hands, our iPads or other methods including supported typing, we can read and just as often, comprehend that reading.  I plead with your large, powerful, charitable organization, no more speak about us as burdens or hardships to our families'.  We are human, not monsters. We may have symptoms that challenge us and those around us, but if the only way the marketing department can raise dollars is to humiliate us, the problem is too big to solve.  I believe you can change.

My autistic advocate friends suggest we wear red, not blue, to reverse the story, shall we say. I love a good gimmick. I am an autistic that doesn't need a red color to be identified.  You see I am an autistic that much of the acceptance refers to.  I need you to accept my inability to speak by mouth is not that I have nothing to say, just that I type it.  I need you to see past my body's difficulty in staying focused and attentive for long periods of time and how I compensate for that, and accept that I am listening and comprehending you.  I need you to not ask me to look you in the eye and accept I see you just fine.  I need you to wait until I finish typing and accept that you may not know what I was going to say.

I need you to accept that if you have a young child who may be non-verbal and very distracted, and " experts" say she isn't comprehending......that child just may surprise you. And go to college, like I am.