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.  

Tuesday, November 4, 2014

I Am An American and I Voted Today.

I am so proud. I voted.  Twice.....ha ha.  Actually, I use assistive communication to communicate, as you know.  I just couldn't get those pen marks in the circle.  I was given a second ballot and my first one was folded and put into a sealed envelope for discard.  I used a computer.  This computer made perfect markings in my choices.  Mom said she was jealous of how the ovals looked on my ballot.

For some in our Country, voting is taken for granted.  It may even be looked at with humor.  Not for me.  When I was told about guardianship and the issues  surrounding my legal standing, I told the lawyer I insisted on voting. She was just as determined representing me.

I believe that as citizens, all of us need the voting booth to in the most important manner,  be our draft, our service to our Country.  We, in fact, must remember that those elected send our cousins and big brothers and new sisters in laws and friends named Terry and countless others in harms way. We must be the guardians of those who guard us.

So, it has been a special day. A long day that I may have been too distracted feeling proud to finish my math homework.  I am disabled. I am autistic, a young woman with many complexities.  I did vote proudly. 

Wednesday, October 22, 2014

I am Back

I missed you. I want to tell you what I have been doing. I think I will overwhelm you. Perhaps you will forget some of what the experts say about us. Perhaps you will look at us differently.
My friends understand.  This is for some of you who thought you knew better.
Mostly this is for my friends I haven't met yet, like me. Don't give up.
I will write more... I have my college to attend.


Tuesday, March 4, 2014

See You Around The Campus

To all my dear friends and family,
 Maybe I can write a poem to say now the joy and yes terror in my heart for my posting today..

On my birthday,
I say happy birthday to my cake.
On my mother's birthday, I say happy birthday to her face.
On my father's birthday I say happy birthday to his eyes.
On my birthday I sing.

In May I will graduate from my most wonderful school. I will earn a real diploma. A college preparatory diploma.  I will attend the local community college here.  I took the placement tests.  It was terrifying. I had not the ability to communicate in my most comfortable manner. I sat and with my determination to successfully show that I would attend, I completed the test in days of 1hr blocks.
A young autistic non-speaking , more -speaking, woman has been prepared for enrollment in the summer term.  I will begin with online courses as I transition from my loving inclusive school.  I had to learn how to sit through classes. I never went in a class before this school where I had homework and tests and read books that were not for children.  I had to learn that Robinson Crusoe wasn't really stranded.  I never had an English class that defined literature terms.  My mom has been my ambulator.  That is the term I use for when she supports me in typing.  My first year of talking with my hand, that's what I call this, mrs. Nikki was my teacher.  I think she helped me learn that I was smart.  Before then, I just couldn't communicate in a way people understood.  I don't blame people for trying their ways.  I hope they understand now that it just didn't work.  Sometimes people talk differently.  It doesn't mean the language isn't real.

Mrs. Nikki got sick and my most wonderful principal asked mom to take over.  She said I was very capable. She said she believed in me.  She said I needed lots of help learning how to follow classroom rules.  If I could, I should come to classes.  I learned most wonderful things.  How you must take turns speaking. I learned people thought I have a good comedic flair.  I learned people are really nice to me when I tell them I am scared.  I learned i didn't needed to worry about my person as much when people knew I was misunderstanding.  I learned I am nice and do understand other peoples feelings.  I just can't respond in some ways like my classmates.  I know I am disabled but I am thinking my voice is not the disability.
 I am like a young woman with a mind that independently wants to focus on many things simultaneously and can't decide how or which to do first.  I believe that my brain is loaded in all ways of potential intelligible activity and actions to perform functions like thought, speak, hear, feel and more all simultaneously.  how and which is most important?  I am learning now but I still need help.  I decide on times perhaps less important to goals I have. other times I need assistance to focus myself.  it is a new concept for me. I have real independent decisions I make.  never before did I know I could be pushed to answer but say no when I want.  I am no longer a passive student in school.  I actively participate in my education.  I have curriculum and teachers and assignments.  however, I am able to ask questions now.  education is not my teacher's decision only, I participate.

The reason I am writing  today is I have decided to rename  this blog.  In anticipation of my graduation and matriculation to college,  the new name for this blog will be:  Emma's Adventures in College.  We will invite you all to my site when mom and I figure all the details out..

I would like, however, to thank some special people.  Mrs .Kathy and Mrs. Dorothy, I will love you always.  My friend Doris, Jonathan, Dina and my English classmates,  Mrs. Diane and John, Phyllis, Kristin, Mr. Chip and my  Lowes team members, Dr. W. and Davica, my friend Mike, Rabbi and Barbara, Kathy, Rick, Nick and Steele, Sue and Bennett, Stacy and Della, and  Renee as well as my Temple family I love you very much.

I need to say a special thank you to a few people who don't  take compliments well.  Dr.  Kathy knew I was me in 5th grade.  She was the woman that said I was more.  Christine is why I talk.  Angelique showed me how. I had a safe school for when I needed it, thank you Roberta and Laura.  Jackie and Paula give me safety to learn.  Lili is the sister I didn't have. Courtney is the sister I have now. Cousins David and Danny are my new best brothers, Cousin Rachel always knew me.  Omi and all my California family as I love you with all my heart.  I could not have learned to listen except from Dr. Diana and Pam.' I love you. Amy S., you were the first person I could talk to who was like me.  I will never forget it.   my cous Susan is a good friend and I love my uncle Philip.  My life would not be what it is now without Coach z  and PP.  I look forward to our phone calls daily.  I can only thank my mom and dad and now big bro with his wife saying I am proud to say I am a part of this family.

I will end today by saying this:  See you around the campus.  I will. be the one wearing my college tee shirt..

Thursday, January 30, 2014

Shut down

I have  not written a blog posting in a few months. I have been been doing many eventful things.  My brother got married and also a moved all his belongings out of our house that I know as my safe home. I am as happy for him as I can find myself although as autistic can take a while to see my house safe the same way.  Maybe I should explain.  I have a picture brain that is made just like a camera. I see in a picture and then it stays.  I don't change the picture . If I am forced to it hurts me for a while.  Time will help and I do have joy for him.

When I couldn't talk with my hand people thought i didn't understand anything, even what they said right infront of me.  I always did.

Please read my friend Kitt's blog
  She wrote the best post I have ever read.

I will write again soon,
Love, Emma