Monthly Archives: August 2015

The Ed Wiley Autism Acceptance Lending Library: Interviewing Lei

Lei is an awesome friend. I am honored to have her as my friend. Please support her if you can. She is truly good people!! I speak from my heart when i say this!! 🙂 ❤ ❤
Leah, you are also an awesome friend who i am also honored to know. 🙂 Thank you, Leah, for what you write, and for supporting Lei, and for interviewing her!! 🙂 ❤ ❤

Thirty Days of Autism

Hand in hand with speaking out and taking a stand for social justice and human rights, there is an opportunity to explore and celebrate amazing things that are happening within Disabilities and Autism communities.  There are many people creating new projects and participating in posAutive events, and expressing or amplifying the important perspectives of Autistic people and celebrating Autistic pride and culture.

One of those people is Lei Wiley-Mydske. She is the creator, curator, and Director of the Ed Wiley Autism Acceptance Lending Library.

leislibrary2.jpgYou read that right! Lei was not satisfied with the focus of the books that were available in her community, and she wanted to make books available that were supportive of neurodiversity and so she just freakin’ started her own library!!

You can probably tell I am pretty enthusiastic about Lei’s project, and I am lucky to live close enough to her that I was able…

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Please Listen….

I am really sick and tired of Autistic/Disabled and elderly people being mind-fucked, gaslighted, taken advantage of, ignored, left to sit at home all the time, with no one to talk to, left to vegetate and rot…..i am so sick and tired of seeing us left to be just used, exploited, abused, neglected and forgotten by friends, by families, and our caregivers.

This needs to change. We are human beings.

This is for all of the caregivers who have mistreated me and stolen from me, robbed me of my smile, my joy, and my money and things. I am calling out the following caregivers

***”No-Call-No-Show Rochelle”,
***”Mistaken Milk Elisa”,
***”Putting My Milk On The Floor Alicia”,
***The old lady who refused to let me ride in the front seat of her car because she said i would break her front seat,
***Little Jessica who kept calling me a stupid ass, who told me she was going to leave me to dress myself after my bath, and who said i needed to take my Autism off and just act normal,
***KT who kept complaining about my meltdowns, then called in sick and left me with no one,
***Sherry who loved to yell at me, boss me around, scold me, and scream at me…..Sherry, who also took my food and made me pay for her food and her kids’ food, Sherry who also took gobs of gas money from me, and then yelled and screamed at em all the way to the bank one morning.
***JuJu who took gobs of money from me for her gas,,
***JuJu’s sister Jessica who did the same,
***Ciera, JuJu’s friend, who also did the same,
***KT again who once again started leaving early and then calling in sick again, to leave me to fend for myself
***Letty who talked to me in baby babble speak,

In addition……

***MB, my first temporary caregiver, who came when Connie was gone for a month and who required several of the long cans of beer, afternoon naps, and then who ended up stealing from me:
a nice bath towel
two of my seashells
peanut butter M&M’s
some of my white trash bags
some of my black trash bags
2 of my cans of Febreze air freshener
2 of my bottles of hand sanitizer
2 packs of Pledge All Purpose wipes
1 whole roll of my compression leggings which cost me, out of my own pocket, $125 cash.
***ARN, my second temporary caregiver, who was nice, and then abruptly quit, saying she needed to get three part time jobs that were going to pay her right away. When i had a serious meltdown, she got angry at me, instead of understanding. When i tried to tell her about how it affected me to have her essentially withdraw her friendship and support of me..she got even angrier, and went onto berate me….and then when i unfriended and blocked her, she wrote a horrible post about me and how i am a grown woman who acts like a child, how i require 5 Slurpees and candy everyday, and essentially said that i am not worth her time.

Also for my family members who have nothing to do with me because i make them too nervous..and they don’t understand or get me.

Also for my ex-friend G who ripped my heart and soul to literal pieces.

Also for HEJ and DB, who both promised to help me…..who both told me they had my back 110%, who both told me they were my friends and allies for life…and then they both turned against me too.

This is why i am no longer doing well either physically or emotionally anymore. I am writing this on behalf of all who are in my same boat. Because this needs to change. Because people need to start caring about us and helping us and stop misjudging us and then condemning us to the trash.

Because.

We are NOT trash. We are human beings. Who have likes, dislikes, dreams, and goals too. And we matter too. We too want to still be a part of our communities.

autistic pride #AutismPositivity2015

I too was yelled at, scolded, and punished for being my Autistic me when i was a child, i too was taught to hate my disabilities. Now i know better. being disabled is not wrong. We are not broken, or damaged, or burdens or tragedies. I am proud of who i am and who i have become.

Autism Positivity Day Flash Blog

By Ivanova Smith

#AutismPositivity2015I am happy being the way I am.
I live being autistic.
I love the movements I make.
I love the stims.
I love my spastic excitement.

I did not always feel this way because I was taught to hate who I am I was taught to hate my disability. Those days were hard but I learned to see the good in who I am when I got older and realized that it give me abilities that love! I love the art ability it gives me. I love passion I receive that makes me energy to do the work I do. It give the passion for history, art, disability justice, politics. I love the way it makes me stay intoned to my childhood passions.

I wish that society would see autism the way I see it. I wish they could see what we can do. I wish…

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To A, Who I Thought Was Going To Be A Sweet Friend To Me

DISCLAIMER: This blog is not being written to slam anyone. I am writing it for educational purposes and because it is MY STORY….MY LIFE. Everything that happens to me will be written about and vlogged about, because i am here to educate people as to how we Autistic adults still get treated today, in the second decade of the 2ist century. With respect to people’s privacy, and for legal purposes, i will use initials and even aliases to describe certain people. I will not be taking this blog down, however, because it is within my rights to tell this story. I do not lie. I may get overly emotional, but then i go back and correct that. This blog is based solely on true events. I am within my legal rights to write this. 

To A:

You became my friend the day my main caregiver walked out——which, by the way, only happened because she did not want me to feel afraid in my own home anymore——which only happened because she and i were both putting up walls of defense…..because we both did not understand each other during the time she was my caregiver for the first 15 months. My main caregiver is now back with me, and she has been back with me for a month now, and i know she cares about me and has my back with everything. She now does understand and gets me, because during her time away, she took the time to read over my blogs again, and to then watch several of my YouTube videos.

A, after you and i became Facebook friends, you also took the time to read my blogs and watch my YouTube videos. You also told me you already understood alot about Autism anyway, because you have a sibling who is Also Autistic. I loved the way you and i seemed to connect right off the bat, and loved getting to chat with you via Facebook. I was so looking forward to my new friendship with you.

When C left, i had a caregiver, M, who at first was nice. But right off the bat, she had to bring up to four to five large cans or bottles of beer to work in order to be able to get through her work better. M is a large lady, larger than i am, so i felt it would not be an issue……plus, i am so dependent on caregivers for my daily needs that i was afraid to tell her no, she couldn’t bring her beer to work.

M was rough with me though. When she would give me my showers, she would wipe my private area very hard, hurting me. Her fist bumps were hard. her hugs were hard. And of she was talking to her friends, which she did alot while on the job with me, she would make me wait in the shower,m and after the shower, to come help me.

She also began asking for my food, snacks, and candy all the time. Then asked twice, to take a nap in my bedroom. I had to say yes to all of that, or else face being left to fend for myself.

She promised me she and i were going to go places alot. That we were going to go to San Luis Obispo, Avila Beach, Pismo Beach, Solvang, Santa Barbara, the park, the movies, the fair, and even to LA to go watch Ellen DeGeneres. M did have a fun side to her, and we got along great for the first two weeks she was my replacement caregiver. We did even get to go see the movie “Ted 2” at the mall, and then we ate at Red Robin’s afterwards. Ummm, i did have to treat her to all of that though….the movie, the Slushees, the popcorn, and then dinner at Red Robin’s.

Then, the third week happened, and she suddenly had to take a nap, on the job….and did so twice. Then she had to start bringing her seven year old niece to work with her. Then she got her new car, and on the 3rd of July, as we drove down the street to go to do my payday day at my bank, she got angry at me, telling me snottily “Well, you didn’t have to come,” when i began to meltdown over all of the windows having to be full-on open, with the wind blowing so hard on my face it made my face actually move, and my hair blow into my face and eyes. When i came out and told her she was being mean, she backed down, and let us have the windows up. The car had air conditioning too…but she needed the windows to be down because they were tinted, and she didn’t want the Po-Po’s—-the cops—–to pull her over.

Also, that day, M asked to borrow $40 dollars from me for her gas for her car. That never got paid back to me, btw.

The other thing she had been talking to me about incessantly, was the nice 4th of July block party she was taking me to….and how much fun we were going to have there. It was going to be a special day and evening, where i would be able to stay past her time to clock off of work.

But the day of the party, she came to my house in a gruff brusque mood, told me to hurry up, something she knew would set me off, and it did. Then when we got in her car, she turned the radio on FULL-BLAST, causing me to cringe in my seat. I asked her to please turn it down. She did. But when we got to the party, she got me set up at a table, and then went off right away in search of beer for herself. I was left to introduce myself to the people around me, who were all VERY friendly to me, by the way, and they went out of their way to offer me food, iced tea, etc. One lady, Yesenia, was like a sweet angel to me. Right way, M got this mean look on her face and kept walking around my table talking to her teeny-bopper type friends, who were NOT friendly to me at all, btw, complaining LOUDLY…and REPEATEDLY……that she felt like she was babysitting a CHILD…so she wasn’t free to drink and get drunk…..and that i was just like a huge ball and chain around her ankle. I told Yesenia how hurt i was,…..Yesenia heard the whole thing too, and took M aside to talk to her, to tell her to let me stay, that she or someone else would take me home….she told her, “Mija, let her stay and enjoy the fireworks, this is what the 4th is all about. She has a right to be able to enjoy her night, just as much as you do.”

I loved Yesenia. I wanted Y to be another new friend to me, just like i thought you were going to be to me, A!!!

Then i went to pick up a chip, an the salsa spilled all over the front of me. Y was in another area, but M was sitting right next to me, and when i got upset, i felt she was going to get me napkins so i could clean it off of my shirt and purse. Yes, she did get up to go to the food tables…..but she didn’t come back for 25 minutes. I finally had to get one of M’s mean teeny-bopper friends to grab me a bunch of napkins…..and i was able to finally clean myself.

Finally, an even gruffer M came back with several pieces of bread and ribs for herself, watermelon, hot dogs, and she only let me have one piece of bread, a small dallop of potato salad, and three small spare ribs. I did get like seven small diced pieces of watermelon too.

I finally had to use the ladies room. M and one other person helped me there and back. But while in the bathroom, i heard more complaining from M about me being there. When i came out, M’s husband came, and she complained to him too.

I asked to go home. It was all i could take. M had one of her mean teeny-bopper friends drive me home, as M sat in the back, with two of her other teeny-bopper friends….and right away, M started chding me, telling me to tell her girlfriends about my sexual orientation, that i am bi-sexual….M is bi too, btw, ,…..but the way M was chiding me, was not funny, and i didn’t appreciate it.

When M got me home, i felt just like i had been robbed of my 4th of July. When i called her to try to explain how i felt, she got mean with me.

I fired M, and hired you to come along as my new caregiver, A. You even talked to M on my behalf, and saw how mean she was being to me. You didn’t like it…..and promised me you would never teat me like this.

The next ten days that you worked for me were nothing but beautiful, happy days. We even made it up to the Avila Port San Luis Pier.

But after Connie came back, i stopped hearing from you. Yes, i understand you have a life, a family, and jobs you have to work at…….But When i tried to find out, via Connie if you were still going to go through with the steps to become my backup caregiver, which i DID have every right to know, you became defensive and angry and snotty, and you and i had our first blowout, because the words you chose were very hurtful to me…so hurtful, i had a horrible meltdown. But then through Connie, we worked it out enough to be friends again. You told us both it would be okay, that you would be coming over to talk it all out with me. We reconsciled, but i still was seeing signs that you really didn’t want to deal with me anymore…..so i tried to talk to you and explain to you how it affected me when you got angry at me, how i melted down…..and i got another nasty gram back, dissing my feeling completely. Then you went onto your wall to slam me to all of your friends and your mom too….likening me to a 55 year old adult who acts like a child…..complaining about my 5 Slurpee a day and candy habit, as if i am wrong to like Slurpees and candy……complaining about me and complaining about me as a person…………

First of all…..i am NOT lying when i say i am Autistic!!!!!!!!…..

I AM AUTISTIC!!!! I REPEAT……..I AM AUTISTIC!!!!!!!!!!!!!

And i am NOT an adult who “acts like a child” either…..that was SO uncalled for, for you to say that. If you understand Autism, then you know that as an Autistic person, we are going to hear, see, smell, eat, touch, feel, and experience things more deeply and differently than a normal Neurotypical person does. You know that many of us have deep PTSD trust issues and abandonment issues, especially with my history of past caregivers, including M, who abused me. You also know that yes, i AM alone and lonely. Even so, i TRY MY BEST to act and conduct myself in as fair and just of a manner, and as much of an adult manner as i can too. The hateful judgements you made against me on your wall, were unfair and uncalled for….and i did nothing to deserve what you posted to your wall for your friends and mother to all see.

I no longer want you to be a part of my life, A. So leave me alone. That means leave me completely alone. Let me heal from yet another friendship gone bad because of people refusing to listen to an #ActuallyAutisticAdult. I did listen and respect you. Believe it or not, but i did. I am NOT that awful person that you posted to your Facebook wall about yesterday.

Neurodiversity by Nick Walker

Parenting Autistic Children With Love & Acceptance

Neurodiversity by Nick Walker (click for downloadable pdf version)

Image:  poster with green top margin on upper and multicolored borders.   Text reads:   Neurodiversity is the diversity of human brains and minds, the infinite variation in neurocognitive functioning within our species The Neurodiversity Paradigm is an emergent paradigm in which neurodiversity is understood to be a form of human diversity that is subject to the same social dynamics as other forms of diversity (including dynamics of power and oppression) Principles Neurodiversity is an essential form of human diversity.  The idea that there is one "normal" or "healthy" type of brain or mind or one "right" style of neurocognitive functioning, is no more valid than  the idea that there is one "normal" or "right" gender, race or culture. The classification of neurodivergence (e.g. autism, ADHD, dyslexia, bipolarity) as medical/psychiatric pathology has no valid scientific basis , and instead reflects cultural prejudice and oppresses those labeled as such.  The social dynamics around neurodiversity are similar to the dynamics that manifest around other forms of human diversity.  These dynamics include unequal distribution of social power; conversely, when embraced, diversity can act as a source of creative potential. In Practice Psychotherapists who integrate the neurodiversity paradigm into their work do so by refusing to label neurodivergence as intrinsically pathological. Instead of attempting to "cure" autistic or bipolar clients, for instance, these therapists seek to help autistic or bipolar people thrive as autistic or bipolar people, finding ways of living that are more in harmony with their natural neurological dispositions, and helping them to heal from internalized oppression. Development The Neurodiversity Movement has its origins in the Autistic Rights Movement that sprung up in the 1990's The term neurodiversity was coined in 1998 by an autistic Australian sociologist named Judy Singer, and was quickly picked up and expanded upon within the autistic activist community. The focus of work within the neurodiversity paradigm has broadened beyond autism to encompass other forms of neurodivergence, while at the same time the paradigm has increasingly gained footholds in various realms of scholarship, literature and praxis. Image:
poster with green top margin on upper and multicolored borders. Text reads:
Neurodiversity is the diversity of human brains and minds, the infinite variation in neurocognitive functioning within our species
The Neurodiversity Paradigm is an emergent paradigm in which neurodiversity is understood to be a form of human diversity that is subject to the same social dynamics as other forms of diversity (including dynamics of power and oppression)
Principles
Neurodiversity is an essential form of human diversity. The idea that there is one “normal” or “healthy” type of brain or mind or one “right” style of neurocognitive functioning, is no more valid than the idea that there is one “normal” or “right” gender, race or culture.
The classification of neurodivergence (e.g. autism, ADHD, dyslexia, bipolarity) as medical/psychiatric pathology has no valid scientific basis , and instead reflects cultural prejudice and…

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The People of Walmart Thing

Dances With Fat

WTFI saw yet another person on FaceBook post a picture of a fat woman, likely taken without her consent, and used soley to make fun of her with the note: “I know it’s wrong but I had to post it.” And, when called out, the further justification of “I know it makes me a bad, terrible, awful human being” but no move to delete the post.  Fuck a bunch of that.  Even if someone was holding a gun to this person’s head they still didn’t “have to” post it.  There is nothing wrong with the people in these pictures – there are very serious issues with the choice to post them, and trying to justify it is far worse.  This is bullying and it’s not ok.  So I’m reposting this piece about it:

You know the pictures.  People in Walmart, or wherever, very often fat people (EDIT:  I missed an…

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Why I Overreact & Put Up The Walls I Do Today

This post is not meant to garner pity…..this post is being written as an educational post so that people can better understand what we, as Autistics, go through when those in the Neurotypical world don’t understand and get us.

I used to headbang when i was a child. I used to also love to run around our round dining room table with my chin against it, so that my chin would feel pain and get a sore on it, because for some strange reason, those kinds of pain felt good to me. These things took away my hurt and frustration.

Yes, i used to have all sorts of stims, and coping mechanisms as a child. I used to also love to sit on the floor in the corner at the end of our hallway and cry for hours on end when i was a child—till there were no more tears left to cry.

I did all of these things, because as a child, i was teased, taunted and made fun of so much, that i often hurt deep inside and was never allowed to articulate it….nor did i KNOW how to articulate my feelings. So, i would do these other things instead.

To be honest, i do not feel like i even had a childhood. Whenever i see pictures of myself as a child, and i go back to all those old feelings of the non-person that i felt i was back then….all of that hurt i felt, comes rushing back to me in waves that threaten to drown me out again. Whenever things would happen, if i would try to talk about them, i was told i had to still mind my teachers and elders, or told to turn the other cheek, and don’t fight back….oh no, never ever fight back. Worse yet, i was told i was either imagining things, or that “Oh, they are just teasing you. It’s okay.”

My father was a harsh stern disciplinarian who yelled at me constantly, who would shake me, pull me by my ears and hair, hit and pinch and beat me…and would even punish me for looking at and playing with my hair, so i could see the different colored shine prisms that i saw in my hair. My sisters would yell at me too for wanting to touch their hair so i could look at the shines in their hair. I grew up being so badly frightened of my father…and was frightened of him till the day he died in February of 2000. I grew up frightened of lots of things….and lots of people.

But from the Spring of my 6th grade on through my 20’s, actually until i was about 32, i began to work really hard to hide my true unique and different self, because of growing up in a family who was sadly, and i hate to use such blunt language to describe them, but they were narrow-minded, bigoted, and racist. And they did not accept my being different. It took alot out of me—-took so much energy—–for me to maintain a normal persona, when i was naturally neurodivergent from birth on. And still am.

I did all i could to make my family, and others, like me. Because i have always hated it when people don’t like me. I even developed such a silly side, so that i could get my family and others to laugh “with” me and not “at” me anymore.

In my Sophomore year of high school though, things got so bad, both at school and at home….i began to run away. I was having nothing but deeply painful times at school and at home both. At school, i would hide in my shell so that the other kids wouldn’t know i was different, but then at home, i began to have a bad temper where my favorite thing became slamming doors and drawers, kicking and punching holes in walls and doors, and breaking brooms and furniture. At school, i had very few friends, and i never had any boyfriends either. I never got to go to parties, and when i did go to dances, i was the wallflower who nobody wanted to dance with.

So, i developed the temper.

Because it is really super hard when you feel like you are all wrong and damaged, even by your own family. It is really fucking hard. I developed huge trust issues and PTSD from an early age, that have not gone away today.

I learned early on that if people behave a certain way, they were suddenly considered bad, and that it was perfectly just and fair to punish them by turning your back on them and making them out to be a villain.

Even so….i still grew up wanting to believe in the good in people…..and then when that good would suddenly turn different, i would close up on that person and run and hide from them. Without hearing them out and working to resolve things between us.

I am still, to this day, a person who is easily frightened off and discouraged. I need a great deal of reassurance and patience, because today, so many things have now become sensory issues and triggers for me that didn’t used to be.

I was doing well for awhile. I did drive from 1990, until April of 2012, when, due to the combination of my leg condition getting worse, (I have chronic lymphedema on both legs) and me losing one of my friends who i had thought was a real ally to me, i stopped driving and sold my little white two door Toyota Tercel…..and i haven’t driven since then.

To this day, i still have a terrible time being able to see both sides of a story when people things happen. I instead build up walls that get really tall now, and i will run and hide far and wide when i think ppl are turning against me.

And then when i moved here to this neighborhood in 1991, one year later, in 1992, my neighbors who lived right next door to me, suddenly turned on me and began to bully me so badly, i regressed and began to have the same type of meltdowns i had as a child. These nieghbors, two girls in their early 20’s, would shriek and laugh at me right outside of my living room where i was watching TV or listening to my music, lay on their horns, blast their music as loudly as it would go, and call me mean names. To escape, i would take long drives and stay away until i was sure my mean girl neighbors were in bed for the night, and then i would sneak into my house, so they wouldn’t hear me and pick on me some more.

I went through years of therapy, and tried living in two apartments and got kicked out of both of those apartments ending up back here at Mean Bully Monster Street each time because the apartment complex noises would badly upset and send me into even more meltdowns. So, i still live here, and i still have neighbors who bully me in a warehouse and an auto shop that are both located across from me.

Today, i am a physical and emotional wreck both, with chronic lymphedema on both of my legs…..and a huge rock hard lymphedema leg tumor the size of a basketball on my left inner thigh due to all of the stress i’ve been through. I also have frequent sessions of heart palpitations, frequent panic attacks, and almost every time i sleep, i have extremely bad and frightening nightmares. In addition, i also suffer long bouts of deep depression where it is even harder for me to walk and move around. I live in a constant state of “fight-Or-Flight” mode, and fear and worry that i will be abandoned and left alone. I am still to this day, deathly afraid of certain noises, of being hated, and of the pitch black dark. I have to sleep with lights on, and i get most of my sleep in the mornings and early afternoons.

Between 1992 and now, i went though agency after agency for help

——-and got only shut doors and the answer NO——

During this time, i also made friends with several people who would be nice to me for awhile but who would then turn on me because they felt i wasn’t “trying hard enough”…..when i knew i **was** trying my best….with the tools i had available to me.

In 2012, i lost one friend, who turned so mean that i was deeply affected for a whole year after that. I began to have horribly frightening nightmares about him. And then, at that same time, my physical health began to decline to where i began to need caregivers, i went through alot more extreme traumatic times of mental, emotional, and financial abuse with those caregivers. These were all huge setbacks for me. One on top of the other, on top of the other.

Some coping mechanisms have helped me to survive all this time, yes, but i have now actually lost the ability to:

Cook

Clean house

Do dishes

And now drive

and lots of other stuff

and i have regressed in lots of other ways.

If i am upset, especially if i feel i am being attacked by others, bullied, or rejected, or ppl are angry at me, or someone taunts and makes fun of me, or does stuff to antagonize me, i will now react by hitting my head repeatedly with my hands, and i will scratch and bite my arms, and hit my chest area with my fists. In November of 2012, i went into my bathroom and gave myself a full-on scalp job on my beloved red hair, after one of my caregivers got really super mean with me. Yes, i chopped all of my shiny dark red hair off…..out of the deep well of hurt i was feeling in my soul that night.

Other things can set me off into these meltdowns too—-especially if my stress level is already up. I have no choice but to do all i can to try to insulate myself from the things, and places where i know i will face sensory issues and triggers, because sometimes my meltdowns can be so severe it is like i am dying, and that really terrifies me. I had a meltdown so severe three nights ago, i was shaking violently, sobbing, and i could not eat or drink anything, because of the nausea i had.

I have had so many a bad people experience that i end up driving even the nice people away from me. I am glad i have Connie back in my life though, and that even though Angel can’t come to help me at this time, i still have her as a friend. I am also glad i have my Facebook Community friends who get me. I also have my mom, and two of my sisters who are kind to me. I also have my faith. This is enough to keep me going. And i do keep going. I still manage to love, to give, to care, and to be…..because i don’t want to give up all hope. I don’t like it when i hurt people either. It is never my intention to hurt anyone. I am working on doing better at working to resolve any issues that come up between me and others. I just hope that next time i don’t end up hurting anyone and driving them away.

I have nothing but love and peace…and righteous anger at all that is unjust and unfair and cruel…..in me.