Sunday, August 30, 2015

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.
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.

Friday, August 7, 2015

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 neighbors, 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:
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 me.

Saturday, July 18, 2015

Connie~~To New Beginnings

The following post is derived from a Facebook post i posted to my wall earlier on Friday evening. As always, when writing my posts into a blog, i like to add to them, for more clarity. That’s just a thing with me. Because…understanding is knowledge, and knowledge is power.
For those who don’t yet know, i have decided to have Connie come back as my caregiver again, because Angel was sadly unable to continue to work for me. Angel’s reason was not because anything went wrong this time, as i stated in my last blog. It is because of financial reasons that she has had to bow out for the time being. But sweet Angel and i are still very good friends. She is one special young adult woman, due to her wisdom, kindness, and compassion, and in the two weeks we got to know each other through Facebook, and then the 9 days she worked for me as my caregiver, she and i really bonded. As stated in my last blog, when she and i were friends, she read my blogs, and watched my YouTube videos, to gain a better insight into how life is for many Autistic adults. Because she has a brother who is Autistic. I still look forward to getting to meet him, by the way.
I bonded right away with Connie as well. Because, at her core, Connie is also a wonderful sweet soul. She has a hard exterior, yes, but life has sadly made her that way. But this go-round, i have talked much more in depth with her, and have gotten to know and understand a great deal more of why she has developed that hard exterior….and i am not afraid of her anymore. I have no reason to be afraid of Connie anymore. My post below explains things in more detail.
From my Facebook post, again, edited for more clarity:
“I had another AWESOME day with Connie!!!! :) She has really opened up to me alot in the past two days and told me things she has never told me before about herself and her life story. (Btw, i have her full permission to post this, and will probably put this into a blog too.) First of all, i want all of you to know, she is SINCERELY sorry for how things went the first time she worked for me, she realizes things did happen last time because of some very heavy things that happened to her a year before she began working for me. But i believe her when she tells me she feels awful about how it went last time with us, that she really cares deeply about me, and that this time, she is going to listen to me when i tell her things, when i tell her i am reaching my limits, and when she is going too fast for me. She means it when she says we are going to go at my pace now. She is also open to signing the caregiver contract i wrote up for all of my future caregivers. If there are problems, she is also open to talking to my mom, and my friends Emily and Angel, to gain better understanding, and to help mediate in case i shut down and lose my words.
Connie is basically a person who cannot just come into someone’s home and care for them and remain “professional” about it. She, like me, bonds with her clients, and makes friends with them. She knows that she and i failed each other the first time around.
Just to give you a little bit of history about her, she and her family came over to the US from Southern Europe when she was 6 years old, and she has endured alot of extremely rough and traumatic spells in life. To cope, she built up walls around her. Even so, she has learned alot along the way, and is still learning alot. She may still have some anger left to deal with, but i promise you all, when you get to know her, you will find out that this lady’s heart IS made of pure gold.
She did not walk out on me to be mean and malicious to me…she walked out because she saw how frightened and petrified i had become of her that day after the social worker called me. I admit, that i did not understand her anger then, and understand and trust that she would never ever be intentionally mean to me….she **was** going through alot still while she was working for me our first time together, but because she still has a heart to want to help people, was still trying her best, to the best of her ability, to be a good caregiver. She truthfully did not understand my Autism either, as well as she does now. During the time she was gone as my caregiver, she did alot of soul-searching, and she actually spent time watching a bunch of my YouTube videos. That, along with some of her close friends also talking to her, who also seemed to understand me even though they have never met me, has changed her mindset a great deal now about me, and for the better. My YouTube videos were a real eye-opener into my soul for her.
I also want to clarify a few more things i posted that were incorrect, and that originally got written the way they did, out of my hurt and anger… is about the rescheduling of three of the doctor appointments that i did in February, March, and May. I had to reschedule the February one because it was raining that day, and Connie fears driving that far in the rain, due to a car accident she was in while it was raining. I rescheduled the one in March, because i had just sprained my leg lump three weeks before, and had just gone to the bank the day before that appointment, and could not handle going in the car again the next day. In addition, these appointments were also always getting scheduled for either the day before, or the day right after my Social security payday—and i generally dislike having to make the effort to get in and out and in and out of a car two days in a row.
Other things didn’t get done because i was depressed alot…and i had been housebound for so many weeks at a time, that i was becoming fearful of going places. Yes, Connie did not feel well alot of the time, which also made it difficult for me….because….as time went on, my fear of her was growing. By May, we had both built up walls that just kept building. Things were breaking down between us both, to the point where all i saw was darkness and hopelessness. I was frustrated because i felt Connie was burning out. I was frightened that any day she would explode at me and then walk out on me. I felt like i was trapped. Which was why i had two of my advocate friends finally call her. Sadly, this made things worse, because, now Connie all of a sudden felt she had to be professional when she still wanted to care. How this happened, was due to mutual fear on both Connie’s and my parts. Fear of us both hurting each other. We both have had an extremely rough going in life, and we have both each developed our own coping mechanisms and walls to survive each of our own lives.
Connie did try with me. She did get me the wheelchair. She worked hard to get my medications straightened out so i would never be without my meds, nor would i ever have to pay for my meds, other than the $1 or $2 dollar co-pay on them. She got me the disabled parking plaque for me. She did intend to get me out and about in that wheelchair. She intended to give me a good Thanksgiving. And a good Christmas. At Christmas, she and my other friends, Sue and H.F., all went in on a nice care package for me of all of my favorite candies. Yes, there were things that didn’t get done. But that was because we were not communicating well, and we each let our fears grow into us making monsters that should not have been there.
But now she does understand a great deal more because she has seen my videos. She has done much soul-searching. And her friends, who understand, have talked to her.
I am optimistic now. I do sincerely feel things are going to work out this time…..because Connie does NOT believe in throwing people away just because they are a challenge. Again, her walking out on me was done because she felt her being here for me when she could see that i had become that petrified of her that day, was too much for her to take, emotionally…it broke her heart to see me shaking the way i was doing, with my hands clenched in front of me after my county social worker called. And after she walked out, she did think about me every day after she walked out, and she did think about calling and messaging me on numerous occasions…and she did call my next door neighbor several times also, to see if i was okay. She told me that, even though she had walked out on me, she was even going to still get my prescription, and that she was still going to get my dinner for me that night too. Fear that i would freak out to see her come back, made her not do those things. But….one month later, i had Angel message her, and she told Angel she wanted to come over and talk to me…..that she still cares about me….and has never stopped caring about me.
I do think it is going to be okay now. :)

Friday, July 17, 2015

Update, Clarifications, & A Second Chance

I am sure that both C and Angel will not mind me writing this blog post. :)

On June 16th, my whole world crumbled down around me when my caregiver of 15 months, C, who was—-and is—-like a sister to me, walked out on me. One month has gone by now, with me going through two caregivers: the first caregiver, M, turning out to be another awful nightmare like the ones i had before C were. But the second caregiver i got to replace M, a beautiful sweet young lady named Angel, who came in to replace M—-was, and is, a true Angel in every sense of the word. I grew to love Angel right off the bat because of how she really got me, how she right off the bat, got how i liked things, and she also gave me a really awesome shower while she was my caregiver. She has a brother who is also autistic, so she does understand a great deal about Autism, and had already read my blogs and watched my videos before becoming my caregiver.

Angel and i continue to be friends now…..because she and i have really bonded. But sadly, though, Angel ended up having to bow out as my main caregiver after a week and three days of working for me, because of needing to have a full time job for now. Angel is not yet in the system at IHSS, and still has to go through orientation so she can start being paid., which was why she needed the other job now, for financial reasons. So she and i spent all of Tuesday afternoon looking for new caregivers to replace her, and she promised me she would make sure she would find one who will be a good fit for me.

Again, Angel is very much still in my life as my friend and as my back up caregiver.

After setting up appointments to interview two of the people who had answered my last ad that i had posted when C walked out—–two people who still expressed interested in working for me—–i decided i didn’t have the spoons to hire more strangers—-so we began to talk about C, and the possibility of giving C a second chance. We talked about this at length, and i decided in the end, that yes, i did want to have C back in my life, because, even though it didn’t work out the first time, i still have strong feelings of love for her, and i still care for her. I wanted her to come back because of all of the good she did do for me, because of how she helped me with all of my meds, how she did do alot of things for me, and because we did have so many good times and good laughs.

So, i had Angel message her. C messaged her right back, saying she was very happy to come talk to me, that she is not at all angry at me, does not hold grudges, and that she has missed me—-and has worried about me all this time.

C came over that evening, and Angel, C. and i, talked everything out. C and i both admitted that we were both at fault in how things ended up going downhill. It was a lack of communication that we both allowed to snowball. We were both afraid of each other. We both didn’t understand each other. We were both trying to read each other, and were both failing to do so.

C told me that the real reason that she walked out on June 16th, was not because of my social worker calling, it was because when he called, and i ended the call, she could see how frightened i was to talk to him on the phone in front of her, and to talk to her about it afterwards. She said that i was sitting in my chair, trembling from head to toe, and that my hands were all balled up in front of me. She could not stand to see me like that, that afraid of her……so that was why she left. She had always told me that if i ever ended up getting that afraid of her, that that would cause her to walk out. Because the last thing she ever wanted was to hurt me and to make me afraid in my own home. And she does NOT want me to EVER be afraid of her anymore. So i decided to have C back in my life to start a new season with me. She started working for me again yesterday, on July 16th, exactly one month after she quit. She has promised me that the old moody C is gone, and that we are going to do things on my plain now. I believe her, and i believe in her good heart. I feel confident that this time, we can make things work.

C and i had lots and lots of good times during our fifteen months together. But yes, things did happen, Yes, we had a real communication problem. Yes, i did grow to be frightened of her. Yes, the walls between us grew too tall, and in the end, neither of us were able to go on this way.

Yesterday, C and i had an awesome day back together. I had her give me a nice long shower, and we took our time. She and i then went out together to get my dinner and drinks for the night too. Our schedule now will be from 3 PM to 9 PM, or from 2 PM to 8 PM like i want…as i actually have more hours now that the State of CA has restored to all IHSS consumers, the 7% reduction in hours they took from us three years ago to balance the state budget.

With Angel now in my life, and C now agreeing to have Angel, my mom, and my friend Emily too, all mediate if there **are** problems….yes, i do feel confident that this time, things will work out. If by chance, they don’t….then Angel and C will both help me to find a replacement caregiver who will be a good fit for me. And they will help train that person.

I do think that C and i needed a vacation from each other. Sometimes we do need to have that space.

In closing, C is going to get me out of my house alot more often. We will start going to the movies, and up to the coast, and other places. I believe her when she tells me she wants to make this work this time. I believe in her good heart, and in her again.

Before i close, i also want to say that on Wednesday, i finally got to go to the coast. Angel and her boyfriend took me, and we spent a couple of hours, as my legs would allow, at the Port San Luis (Harford) Pier up in Avila Beach. I took lots of pictures, which i posted to my Facebook. It felt good to get to see the ocean after not seeing it since November of 2013. :)

I also need to retract what i wrote in a blog post on June 27 about C bringing all of those motorcycles on my street to terrorize me. She did not order those bikers to come do what they did. Those bikers were not even her friends like i had thought they were. C is fully aware of the sensory issues i have with those types of noises, and even if she was boiling pissed at me…LOL….she would never, in a million years, come and do burnouts in front of my house, or get any biker friends to come terrorize me, because she knows what that would do to me, and she is not the type of person to be vindictive and malicious. She has apologized for things that did happen, and has vowed that this time, she will do all to help me remain happy, safe, and free. I believe her. I believe in her. I believe in forgiveness, and i believe in second chances.  :)

Thursday, July 9, 2015

My Meltdowns

In this blog, i want to explain what i go through with my meltdowns. My meltdowns are mainly caused by bad people experiences and interactions, and sudden loud harsh noises. They can also be caused by me making a mistake. Or by accidently bumping my nose or parts of my face. Or by bumping into a wall. Or the wind blowing through open car windows and blowing my hair all over the place. Any sudden change or environmental thing can set me off into a meltdown. 

When i have a meltdown, i will often rock and hit myself and shake my head back and forth. I will, at the same time, moan, groan, wail, and start saying different words and phrases over and over. Some of the words and phrases i make up have a definite meaning to me as to how i am feeling at the time of my meltdown, but to others, these words and phrases sound random and don't make any sense. Here's an example: when i had C as my caregiver, whenever she would get harsh with me, i would start to meltdown, as described above. She would often react by abruptly leaving the room, and leaving me to meltdown, leaving me thinking she was angry at me. Usually, though, she would come back after abut 10 or 15 minutes, and we would talk it out. But in the last month before she quit, she began to get in more and more harsh moods with me, so i began to refer to her as a rough washcloth over and over and over, whenever she would say things that would upset me. The reason for the phrase "rough washcloth"? Was because my grandmother used to have washcloths that were always so hard, stiff and rough, and she would would run a hot wet one all over my face when i was little when she would wash my face----and oh, i hated that!!. C's harshness reminded me exactly of my grandmother's rough washcloths, so i would tell her "You're being rough washcloth....being rough washcloth....being rough washcloth" and i would say it over and over again while rocking back and forth, and hitting my arms, because she, C, wouldn't listen to get her to stop being harsh with me.

Some of my meltdowns are quiet, but some are very loud. When a loud car or motorcycle roars and screams through past my house, and they don't stop gunning their motors....i will yell, scream and curse, till my voice gives out, while hitting myself. When they do loud burnouts across the street at the auto shop, it really sets me off!!

During another meltdown, i ripped all of the nice nice scenic pictures i had on my walls here in my living room all down because my ex-friend G who used to live next door to me, upset me really bad one time. I threw them, and a bunch of books i had, out on my front lawn, as i cried. G used to upset me alot when he lived next door, and it would always take having my mom call him to get him to rectify things between us again.

When one of my past caregivers upset me really badly in November of 2012, i went on a meltdown that lasted the whole began by me getting the duct tape and putting two pieces of it on my mouth and i posted several pictures of me with the duct tape on my mouth, with a poem "For Those Who Don't Understand", on FB, then i did a long video about what happened, and then i picked up my scissors and went into my bathroom, with hot tears of hurt streaming down my face, and i punished myself by chopping off all of my beloved red hair....because of how mean that caregiver got with me. I posted another video of me with my newly chopped off hair, explaining what i had done and why. Then i grabbed the nice red shirt i was wearing, and ripped it to shreds with my bare hands. That was how distressed i was that night. So, yes, people things especially, can hurt and trigger me very badly, when ppl are just downright mean, it hurts way deep inside of me, and it is like the whole world has caved in on me. And i have had so many people in my life turn against me and turn mean towards me.....that i now have nightmares almost every night and day when i sleep.....and i now have deep trust and abandonment issues. 

During a meltdown, i will often lose my ability to talk in full sentences, and sometimes i will babble and not make sense. My words that do come out, will come out fragmented. It is important that people around me do not yell, lecture, or scold me during a meltdown as that will only make it escalate. It is better to remain calm, and ask me "Is there something i can do to help you?" Or, "Did i do something to upset you?" If i say yes, allow me the time it takes to calm down to tell you, and then let's talk things out, and if possible, do what you can to either remedy the situation that caused the meltdown, or suggest alternative solutions to me.

I am Autistic, for those of you who are reading this who don't know, and i only have so much self control when i am having a meltdown. The way our meltdowns manifest, can't be helped. However, i am not violent in the sense that i will ever hurt others during a meltdown!! I do happen to do alot of yelling, screaming, moaning, groaning, and cursing and i am more likely to self-punish during a meltdown. I am able to hold my meltdowns in for a while, depending on the situation, but then it does come out sooner or later. I will sometimes hit my face too, but i mostly hit my chest over my heart, and i will also bite, scratch, and hit my arms.

Sensory overload is very hard for those of us who are Autistic, to control. It isn't like we are doing this on purpose or choosing to do this. This is what a meltdown can look like. I am hoping one day to be able to record my meltdowns so ppl can know what goes on with me when i am having one. 

Also, a meltdown happens usually due to sensory overload, or if we are triggered, or someone upsets us. What i am describing above, is a meltdown, not a temper tantrum. It's important to know the difference between meltdowns vs. tantrums.

I am here to tell my story and by telling my story, i strive to educate ppl what it's like, in my own voice, so they understand that we #Autistics are real human beings with feelings, that we matter, that we have a voice, and that we are wired differently. Because of this, we process everything much differently than neurotypical ppl do. We are more hyper-sensitive to the environment and world around us. 

We are not the tragedies and burdens and monsters that organizations like Autism Speaks portray us to be. We are not wrong. We are not damaged or broken. We endeavor to show the world that all we want is to be accepted, loved, and included, to be a part of our communities, and to not be fixed, cured, and eradicated. 

Many of my meltdowns happen when ppl misunderstand, don't listen, and talk over me when i want to talk and explain things, and then they go onto judge, assume and condemn me. Then turn their backs on me. Or they knowingly and purposely do things that they know are triggers to me, and they mock, and make fun of me. if ppl get angry at me and walk out on me, that is a huge trigger for me. Because i am deathly afraid of being left alone, stranded, to fend for myself.

I hope that this blog will be read and shared far and wide. Because this is important. Please listen, learn how our minds work, and learn our language too. Let us talk and tell our stories. Let us be ourselves. Let us stim. Learn how we like and don't like for things to be, and accomodate us. Accept us. Include us. Because. We matter!!

Saturday, July 4, 2015

More About My Last Caregiver…And To My Future Caregivers

I am still losing spoons alot lately because i am still going through so much hurt and anger about my last caregiver.. Not only did she walk out on me abruptly, i discovered that some of what she bought me when she made her last trip to the grocery store for me before quitting me, like a whole package of Colby jack cheese sticks, and 5 pints of Haagen Dazs chocolate ice cream, had bad dates on them. The cheese had 7 days till its expiration date, and with cheese, it can go moldy on you in a heartbeat, and WAS already tasting bad. The ice cream was dated March 2015. I had to throw both the cheese and the ice cream out. My last caregiver knew that i always requested good dates on all of my perishable items, even bread. This was a good $40 dollars worth of food i had to toss in the trash. $40 dollars that i could ill afford to throw out!!
Then i discovered…..actually, my new caregiver……..told me that all of the boxes i got from my mom and Amazon got thrown in a huge sloppy pile in the middle of my converted garage room….and she and her seven year old niece spent Weds. cleaning that all up for me.
But i truly think in the last month of my last caregiver working for me, that she was growing to hate me. I could see it in how she would ignore me, tune me out, and blow me off more and more when i would talk to her, and her moodiness was becoming intolerable for me to handle anymore.
For a normal person, it takes time to get over someone walking out and giving up on you. But for an Autistic, it can take alot longer. It does for me, because i already have extremely deep PTSD and deep trust and abandonment issues from a lifetime of abuse by family, schoolkids, people in the churches i have gone to, to government agency people, to friends i have had, turning their backs and turning mean towards me, and now, 20 caregivers who have been mean and abusive.
All my life i have battled and fought to love and accept myself, even though few people have believed in and loved and accepted me. That is a hard battle to learn to love yourself when others around you don;’t believe in you and are always walking away, because of “behavior” that they can’t or don’t want to take the time to understand.. When your own family thinks of you as a penance, a burden and piece of shit….you tend to think so of yourself too. it just works that way. I still to this day grapple with deep-seated self doubt and self esteem…..especially when someone tells you that yes, you can trust them, yes, that they have your back, and then they fucking turn and walk out on you.
Yet….i am still here fighting. But if i am half here lately, please forgive me. It is going to take me a long time to get over my last caregiver walking out on me when she promised me she would never do that to me, and that i could trust her, and that she had my back.
Trigger warning for discussion of hateful, cruel, ableistic racial slurs, and slurs against the LBGTQ community….
My apologies, but i need to get this out, because this was one of the things i had to endure and suffer through with my last caregiver……. and it felt awful to be in my own skin when she would get like this and go off on her rants:
Now that she is no longer my caregiver and on my FB policing it and me, i want to share some of what i, as a bisexual who supports the LGBTQ community full-on, as well as transgender rights….and as a white person who knows racism still very much exists, and who fully supports People Of Color……had to go through with my last caregiver.
I used to really dread and hate it when she and i would have “talks” about LGBTQ rights, and about racism and the police shootings of Blacks…..only they weren’t talks where each of us were able to equally participate in the conversation……when we would have these “talks”, she would come on like a flaming dragon, usually after seeing a news piece on the evening news that i would be trying to watch and listen to…… and she would start her rants, doing all the talking, and standing over me, wagging her fingers, with her eyes bulging angrily out, talking loudly and belligerently over me, telling me why she felt transgenders should not have the right to use the bathroom they want……and she would use crass language to explain her views…and then, she would go onto say why she felt that transgender people are taking it too far when they have the transitional surgery……i would try to tell her she was being wrong and unfair, and she would get even louder, continuing to talk over me, and refuse to listen to me.
About the riots, she called the ppl doing the riots thugs, and even used the N word, and even said that white officer had valid grounds to shoot‪ #‎MikeBrown‬…..and on and on she would go till i was in meltdown mode, imploding, because she would try to force her racist, bigoted beliefs down my throat, just like my late father always did….and then when she would leave, leaving me to be upset and unsettled all night, and on weekends, all weekend long.
She would then change the subject, not letting me say anything back in defense against her awful views…… leaving me with so much i wanted to say back to her, unfinished. To let her know she was being disrespectful and unfair……and WRONG.
In short, i feel that ppl like my last caregiver, are fuckin’ bigots, who take their ignorance of the subject of transgender issues, all LGBTQ issues, and racial issues and then run their bigoted mouths,—-and it is worse that they did this in my own home. Before having the chance to be educated. And not letting me educate and talk to them.
I had to listen to these rants, as part of my caregiving, and these rants she did, really affected me, like i described above. Her rants were so demeaning to me deep inside, because i am bisexual….and i have alot of transgender friends, i have alot of gay friends, i have alot of bi friends, i have alot of queergender friends, and i have friends who are People Of Color, and i have read the truth about what happened in ‪#‎Ferguson‬, and with ‪#‎TamirRice‬‪#‎EricGarner‬, etc…..and i KNOW, for a FACT, that racism still exists!!! And that the police brutality and murders of PoC also happen, and that this needs to all fucking stop!!!
And then one day, my last caregiver also came into my house to start flaming at me about the Josh Duggar sexual assault story, shocking me by defending him all up and down in my living room, only this rant was worse than all her other rants. With this rant, she was almost screaming….and again, i could not get a word in edgewise, and when i did, she screamed at me that this happens in EVERY family, asking me, “Didn’t this happen in YOUR family too? So should all young boys be sent off to jail?”…..and then she went farther, yelling “Let’s jail everyone who makes ANY mistake and send them before the firing squad!”
Again, i apologize upfront for bringing this up…..but this was how awful things would get with my last caregiver. Her rants were abusive. Her rants were me being in front of my own abusive dad all over again. I never want my last caregiver to come near me ever again. I never want any caregiver to come into my home and abuse me ever again.
To all of my caregivers from here on out….i am a nice person, i am generous, good-hearted, and kind…but when you come to my house you work for me. I am the boss. I set the hours. I am a Democratic Socialistic Liberal, i am pro-choice, pro-LGBTQ, bi-sexual, and i like my indie rock alternative with New Wave and electronic and good quality hip hop thrown in….and i am also an Autistic adult. So when you come to work for me, i expect you to understand, be patient with me, learn all you can about me, the way i like and don’t like for things to be, and about my Autism, my sensory issues, and do not push me to be normal and neurotypical when i am clearly not. I also do not drink, or smoke. If we go to a party, i do not want to be forced or pressured into drinking, as a way for me to loosen up…..let me loosen up at my own pace, or i will be afraid to go out again.
In my house, i do not tolerate racial slurs, or disabled or abelistic slurs. No R word. No N word. I am also housebound, on a fixed income, and can’t go to the store when i want, so please bring your own water, beverages, and snack food. And when i talk, please listen with all of your heart, and without interrupting me or talking over me.
If i have a meltdown, do not react with anger or yelling or scolding me. Remember, as an Autistic, i process and deal with things on a much different level than a normal person. Please respect that, and if i have a meltdown, please talk to me in a calm voice. Yelling and scolding me will only agitate the meltdown and make it worse. It is perfectly okay to ask me, in a calm voice: “Is there anything i can do to help you right now?” Then give me time to tell you. If the meltdown was caused by something you may have done, let me explain, and then please do your best to fix the problem for me. If it can;t be fixed today, then tell me when it can be fixed. I will understand…..unless you tell me it has to wait for more than two days to be fixed/resolved.
Also, if you promise to do things for me, please, please follow through on those promises. Nothing is worse than getting my hopes up that something is going to happen, and then it doesn’t happen. I can’t take that. Please only promise me things that you know you can do for me.
If you find that you cannot handle working for me, please give me two weeks notice so i can have time to find someone else. And please….if you have any problem or issue, i want for us to talk it out.
And now, i try to move forward as best as i can. Please remember, PTSD is not the same as people just dwelling on the past. PTSD is a very real thing, and i am trying to move forward and heal.
But to all who come aboard as my caregiver, please respect and treat me as the human being i am. I am not less-than because of my disabilities.

Saturday, June 27, 2015

To My Last Caregiver, Please Leave Me Alone, You Have Hurt Me Enough

I did nothing wrong, absolutely nothing wrong, by exercising my right to get the help i needed so that i could get myself out of a situation that was utterly and completely abusive, and that was oppressing and suffocating me to death. I did nothing that was mean nor malicious. I only did what i had a legal right to do to protect myself from your anger and bad moods. Because. Your anger and bad moods were affecting my life on every level. Things weren’t getting done. And i was always getting riled up at things….because you always seemed to be riled up all the time. At something and/or someone.

Yet now, you are retaliating by getting your loud Harley biker friends to roar like evil lions past my house tonight. And your other friends who have loud vehicles too. Why? You have already hurt me enough.  Please stop it. When you worked for me, i tried time and again to talk to you and work things out so i could keep you on as my caregiver long-term. But you put up walls, and shouted me down whenever i tried to stand up for myself….and you made me feel like i could not even be free in my own house too. You rushed me all the time. All the time. You always seemed in such a hurry to get home at night. You kept me from the fresh air, kept me from my right to be able to shower everyday if i wanted to, kept me from people, kept me from so many of the things you knew i loved. When i would express my joy at a beautiful sunset, you would shoot me down, and quell my enthusiasm like a thick musty wet blanket. I had to finally take a stand. Yet now, earlier tonight, four loud bikers came roaring past my house…..and then they came through again about an hour and a half later, and even though they didn’t come back on my street again, when they left the area, they still roared their motors loud enough to make me scream in agony. Now, other loud vehicles are coming past my house gunning their loud motors right outside. Is this what you want, to turn me into an enemy too, like all of the others you seem to hate in this world?

I had to get my friends to help me. I had no choice but to call my worker. That is all i did. Only to protect myself from your rage and anger. Because i was, and am afraid of you. Because your anger was killing me, mind, body, and spirit. Now you want to turn around and hurt me even more tonight. I thought you cared about me.
Please have mercy on me. It is just me here. You know i am not a bad person, and that my heart is so big i would give anyone the shirt off of my back. My mother still prays for you everyday, both you, and for your mother too. She also prays that i will have angels surrounding me and my house, who will protect me from all who try to harm me.
Please tell your buddies to stop coming on my street to terrorize me. Please stop and think about why i had to take the actions i did by getting some advocates to step in to help me. Please stop and think about how i felt, and all that i kept trying to tell you all along, and you wouldn’t listen to me. I gave you chance after chance after chance, because i loved you like you were my sister. And i trusted you.
Please remember that you walked out on me.