Monthly Archives: April 2017

This Is my Situation & Why I Don’t & Cannot Do Any Better Than I Am Doing To Cope With This Life

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I honestly do not know how much longer i can go on like this….
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I am Autistic and physically disabled, and i am doing my honest best that i can do to cope and get through each day….and it is getting harder and harder to go on like this.
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When Connie goes home each afternoon, the sun is still shining, and i am all alone with no place to go where i can enjoy these long evenings—–i have no pretty views to look at in either my front or back yards—-just the ugly yellow tin buildings all around me—-and i have to listen to painfully awful loud bass and hot rodding all day long—–so, i remain cooped up inside, and i turn up my TV and music and fall asleep, because there is nothing else to do.
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I am also all alone on Sundays, housebound, unable to go anywhere, do anything, and no one comes to visit me…..
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I may have three brothers, three sisters, seven nieces and three nephews….but all of them, with the exception of one sister, and my mother, have nothing to do with me….there are no offers to be Facebook friends with any of them, and i am barred from calling them or emailing them…..i am also actually blocked by one sister and one sister in law.
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Growing up, i was raised to be terrified of my own father, and i was ganged up on all the time by my normal brothers and sisters, always hounding me to be the normal neurotypical i was not.
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I got told time and again—i would never have friends, never date, never hold down a job, and never learn how to drive. Over and over again.
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I lived at home with my parents till Dec. 1987 when i was 27 1/2 years old. At which time, i moved to my own small apartment that was in back of a bigger house that was rented by two kind old ladies, a mother and daughter who took me under their wings and gave me the confidence to really be me for the first time in my whole life.
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I grew up having few to no friends all through school. I grew up bullied and being made fun of. Both at home, and at school. I grew up knowing my father hated me because i was so weird, so different.
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I learned to cope by developing my inside world made up of imaginary friends that i would make out of certain roads, highways, and electronics—-and i still do that today. I also turned to TV and music and pen pals. And eating.
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I made friends with the two speed radar trailers that were here last year. But those got taken from me. I am still waiting and hoping fervently the police will put the nice one back here, the one that had the nice red “SLOW DOWN” sign. Then i would be able to feel safe enough to go outside again, because those speed trailers had that affect on me, of actually making me feel safe to be in my own front yard.
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I have my mom to talk to via phone. Connie comes for several hours six afternoons a week.
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But the rest of the time—-i am here, stuck in this house, unable to go anywhere, and no one visits me.
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If Connie is unable to come i sometimes have one sweet local friend who will get me my dinner and sodas—–otherwise—-i am all alone with only my internet and TV and music to keep me company.
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I used to love it when i could drive and escape up to the ocean to sit and watch the waves, and go sit in certain restaurants where i would make friends with some of the wait staff and visit with them.
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I used to love the long evening drives i would take when the days would get longer, where i would actually drive all the way up to Cambria and back.
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I don’t have that outlet anymore.
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I had to move to my current place in 1992, where i have regressed again because of the mostly cruel nature of the people who have lived here and who work here in some of the nearby businesses—-this has had me in a constant state of stress since 1992—-and this has affected me profoundly by me gaining lots of weight—-and then the lymphedema happened, as i was run out of my bedroom by even more cruel next door neighbors my mother rented to one summer who would smoke in the carport and blow it right my way—–
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So i began having to sleep sitting up on my living room sofa, with my legs down on the floor—and my TV turned up loud to drown out the outside noises of the loud bass and hot rods and bullying noises. That caused the lymphedema in both of my legs.
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I eventually stopped driving and became a shut in because it got harder both physically because of my legs, and mentally for me to get out of my house by myself.
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I have been relying on in home caregivers to take care of me now since 2012. Before i found Connie, i suffered, literally, through a string of caregivers who were mentally, emotionally, and financially abusive, with three in particular, Little Jess, Sh, and JuJu being the worst.
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I also suffered at the hands of a man who was supposed to be a friend and ally, but who would get mean with me every other month, and then he finally turned on me for good, which devastated me, and caused me to have horrible nightmares……on top of my Tiffany (another mean neighbor) nightmares, and nightmares i still have to this day about my father and family.
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My caregiver Sh would routinely knock down my dreams and goals and yell and scream at me and belittle me. One day, her yelling and screaming reached epic proportions, as she drove me two whole miles down to my bank, yelling and screaming at me the entire trip down—two days later, she walked out on me, turned my next door neighbor against me, turned my friend from Bakersfield against me who used to come here to take me up to the ocean—-and she called the cops on me to try and have me hauled off to a long term care facility. Actually, a mental facility.
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In the summer of 2015, Connie and i took a one month break, and i suffered with two more abusive caregivers, who also took money from me.
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My reactions to so many things are deeply intense now——- because again, i am mostly all alone here when Connie isn’t here. And the PTSD and fear of being bullied, made fun of, rejected and abandoned have not gone away and are still very much a huge part of me.
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This is why i am often in ultra sensitive moods.
This is why i often take the things people say too personally and too literally.
I still have days when i don’t know whether Connie is being serious or is joking with me.
I still have great doubts about myself and even still have internalized ableism.
I tend to still push people away out of my fear that i will be hurt, bullied, made fun of, and rejected yet again.
It is hard when just getting up puts me straight away into a battlefield—-in my own home—-because of the way this neighborhood is.
So, if i have fucked up days, please forgive me, and please forgive me if i misunderstand and misinterpret the things people do and say. I am very good at putting up walls—-don’t let me do that—-don’t let me push any of you away.
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I am happy and proud that i am Autistic. Because this is me. This is who i am.
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I just wish more people would understand why i act, react, do and say the things hat i do. It is out of fear and fear of being abandoned and left to fend for myself by so many in my past, even family when they all moved out of state and left me here.
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I have a heart. I care. But i am hurting deeply inside 24/7, mainly because my biological family has actually seemed to of discarded and disowned me because of my Autism. And that is what hurts the most of all.
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Hoping this posts with the paragraphs this time……why i put the lines in between paragraphs—because this didn’t post right.

Anthem For April by Amaranthe Rae Lovisi

thereluctantelfqueen

Don’t reduce me to the puzzle piece
you find ugly and malign
And the part of me your narrow
typical mind can condone.
The puzzle piece I find ugly is the
ubiquitous blue design,
Alex Spourdalakis’ and Katie
McCarron’s mass produced
tombstone.

From its azure knobs and corners
drips blood only we can see
And I am not a mysterious
conundrum or tragic riddle to be
solved.
Set fire to the bigoted texts written
about children like me
And know we grow into adults with
internalized bigotry unresolved.

I am dismissed as if eye contact with
danger didn’t fill me with dread.
You think your degree gives you the
right to decide my identity?
Not that nor a family member nor a
psych class puts you inside my head.
How many letters must follow my
name before you will listen to me?

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We Don’t Need Autism Awareness

FAAST, Inc. Blog

Amy

I say this with strong conviction, as an Autistic who has been hurt by the “awareness” campaign.

The Autism Awareness message does not reach the larger public in a way that helps us and our families. In fact, it hurts us in many different ways, sometimes leaving deep scars.

Awareness brings pity. We are seen as unhappy, suffering, tragic people who cause pain and despair to our families. Our most vulnerable moments are constantly on display, as if only Autistics have bad moments, as if we never experience and share joy. Those are wrong assumptions.

Awareness brings the grading of Autistics. That absurd notion of “low” and “high” functioning is spread around to silence Autistics whose disabilities are not so visible, and to make Autistics whose abilities might be still hidden look like a big bag of deficits in need of fixing.

Awareness brings dangerous practices. The use of questionable…

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I Am Autistic: An Evocation

ACAT: Ala Costa Adult Transition Program

This is a piece I was asked to write for the Autism Acceptance Blog last year in [this case] celebration of Autism Acceptance…..

I have become the person I was always afraid to be. I sit here at 57, typing, and saturated with visions of the World Behind the World and my internal language. It is beautiful. I became the person I was always afraid to become and I am beautiful. My body falls through space, sometimes too big and sometimes too small: feeling the pull of gravity bending light and matter. The world too pulls at the edges of my skin or bursts through my eyes and though my ears in multiples of five. My body falls through a world that is never quiet with its architecture assembled from an infinite number of quarks dancing in and out of existence-swirling and screaming: a world that sometimes tears at the…

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Autism Speaks *still* does not speak for me

The Caffeinated Autistic

Most of the folks who read my blog do so because they googled the phrase “Why is Autism Speaks bad” or some variant.  They know me to be an outspoken person and not afraid to explain why Autism Speaks will never be among the organizations I support.  This is, of course, not in any way on a whim or by some ridiculous grudge. There are a host of reasons why Autism Speaks doesn’t speak for me or for other autistic people.

But I must admit that my original post on them isn’t 100% accurate anymore.  There have been two notable changes to their organization within the past year and a half  – 1. They have removed the word “cure” from their mission statement and 2. They have added two autistic board members to their organization.

So, of course I’m sure this makes people question the veracity of the claims that…

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What’s Wrong With Autism Speaks? A Collection of Resources

So Much Stranger, So Much Darker, So Much Madder, So Much Better

April is coming, which means stores will have puzzle pieces everywhere, places will be lighting up blue, and walks for the cure will take place across the country. All of this in support of autism awareness with most of the funds going to Autism Speaks.

Most likely, as some point throughout the month, you will see a variety of advertisements and awareness campaigns from Autism Speaks as well as be asked to donate some money. Maybe it’s just buying things that donate a part of the proceeds.

Before you donate, please take a moment to look into this organization and what it’s awareness and fundraising is really doing for the people it claims to support.
While Autism Speaks is the most recognized autism nonprofit, many autistics are strongly against this organization with many calling it a hate group. Let’s explore some of the reason’s why.

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