Sunday, March 16, 2014

You Cannot Argue and Yell and Scream My Autism Away!! I Am Not Brain Dead!! I Am Not Brain Dead!!!!!!!

These are more ventings of what happened with my seventh caregiver who was my high school friend....because the things she did, still greatly haunt and upset me, as i am still so not over alot of the things she did and said to me........she walked out on me on Weds., April 24th, leaving me once again with no care. I had to cancel a very important medical appointment i had had for that Friday, to see about getting my leg tumor removed, as it is really getting in the way of me being able to walk, get in and out of cars, and even get my legs over the side of my tub so i can take a decent shower. I had wanted very much to see that doctor, and now i could not....because she walked out on me, when she promised me she would not ever do that.She also promised me she would not yell and scream at me or treat me like she had treated me the two times before when we tried being friends, back in 2010 and early 2011.

She became my seventh caregiver when my fifth caregiver got extremely sick with the flu and my backup caregiver (my sixth caregiver) had car problems and an ill family member at the same time, and i stupidly fired both of them, thinking they didn't like me and want to work for me anymore now because of all the meltdowns i was, my high school fried agreed to help me until i would be able to get a new caregiver.....I had been friends with Rose, not her real name, two times before.....and both times our friendship ended on very bad and explosive notes, because she would force her views and likes on me, to where i felt that i had to like her things too, and her way of thinking.......she is a self-avowed Jenny McCarthy-Style Autism Warrior "Curebie" Mom.....and i am into embracing my autism as the culture and right to be that it is.....i don't want or desire to ever be fixed and cured.....and i get very upset and meltdown when my way of thinking and dealing with stuff, when my coping mechanisms, rituals and routines are not respected, or my things are moved in my house.

Rose's and my first yelling match was over what she said she could and could not do as my caregiver. She argued with me till she had me in a screaming meltdown, that she would no longer be able to go get me Slurpees or any takeout food anymore, that we would have to cook all of my meals at home from now on, and that she would have to deduct even the times she took me to the bank and post office. I told her that IHSS does not audit our times together, and that what she does extra, she is doing as my friend, because i need those outlets, and need to get to my bank and post office too. After her yelling at me to "Calm down NOW! You need to calm down NOW!" complete with her finger pointed at me, i finally convinced her to keep letting me have food from restaurants and my Slurpees. And to stop yelling at me, because this is my house, and i didn't feel safe in my own house around my own things when she would yell at me. She seemed to actually realize and understand that, and the yelling stopped for awhile after that.

But...she was a paid friend. She was like this the other two times we were friends also. She was always taking money and food from me. This time was no different. Everytime i needed her to come extra times, outside of her work as my caregiver, she would ask me right out for gas money, to the tune of $40 dollars at a time, and she would let me treat both her and her 10 year old boy to lots of pizza dinners, and other dinners out. Alot of times, she would take an extra $20 for each day she would come to be with me on weekends. She would ask me right out for that too. On Christmas Eve, i had to pay her $20 to come in and take me around to look at all of the Christmas lights. We had fun that evening, but i had to fork over the green for that too. She did not pay me back for any of that, nor for the four weekends in February when she came to stay with me during J's eviction process. But then even after IHSS began paying her, she would still run out of money, and make me pay her for her gas. I did get that money back when she next got paid. But now, the savings that i had built up for a new Apple computer and iPhone 5 had dwindled way down....because even though she was paying me back for most of what she took from me, we had all those extra dinner costs, and all of her other honey-do costs......

Then, she took me to the hospital, because i had a gash on my abdomen that had become infected. When we came home, she again tried to get me to stop drinking the Slurpees...i could not do it, because i love my Coke and red cherry flavored cool frozen icee drinks. On her trips to the stores she did get me new cookware, and a Ninja, so we could also have homemade fresh fruit smoothies. I enjoyed those too. I did let her cook for me, as well as go out for cheeseburgers and food from Little Caesar's Pizza, and some of my other favorite places. But i continued to have her get my Slurpees for me, two a day, and then it went to three a i became that addicted to them. They don't last that long, so i felt i needed three of them to properly get through my day.

Back in March, when she went to color my hair, she was putting the hair color in with the shine formula in the mixer bottle, and i noticed she only shook it alittle bit, to where it was still very much a yellow color. You are supposed to shake it for approximately 10-15 minutes, till it turns dark red inside the bottle, then put it all over the hair. I know this from watching my other caregivers do this. She proceeded to heatedly argue with me over this, actually yelling at me when i kept telling her she had to shake the bottle till it turned red. She told me she colors hair all the time, that it will turn color on my head, not in the bottle. I am SO glad i insisted on taking the bottle of color from her and shaking it myself, because my hair would of turned out not even close to red, but an un-Godly shade of orange or blonde.......i didn't freaking pay for blonde or orange hair, ya know? I paid for dark red and i wanted my hair red!! Then, when she went to put the color on, she only put it on lightly, and she kept missing spots, and i would have to tell her to go back, which resulted in more of me having to hear her yell. As a result, there are small patches of hair where i can still see some gray here and there. Yeah, for the most part, it is red hair, but with a few patches of the gray still showing in spots.....yeah!! I think i will do my own hair from now on!!
Then there was her car. In her ultra small and low to the ground mid-90's model Ford Mustang, the inside of that car was also always way too hot for me.....even with the heater off, and the vents open. She would refuse to let me have the A/C, saying that it used too much gas, and that it gave her headaches, so she would instead, roll her window down and have me roll mine down, and we would go down all of the city streets with the sound of the wind roaring and other cars, and i hated that too. I really hated riding in her car, because it was so unpleasant for me to ride in to begin with, but on top of that, she always insisted on having her huge heavy leather purse right between us, stradling the console, and always sliding onto me. I had many a meltdown in her car....i was always having meltdowns in her car, because it was so hot in that car that i literally could not breathe....and it was always too cramped, and made even more so by her stuff which she said had to be on the center addition, she would often play her music, which is a radio station that includes both old and new rock and pop hits, and it will often play oldies from the 1970's that are triggers for me, because of how they remind me too much of my past.....when we'd get in her car, her radio would always be blaring on this station.....i knew it was her car, and i tried to respect that....but there were some days when i needed to have my eclectic mix of underground alternative indie rock, underground hip hop, and 80's new wave music.She was always yelling at me, and when i would meltdown, then she would let up on me.....

She yelled at me when i got upset that she had taken and broken one of my brand new round plastic bowls that she had just bought me, by smashing the ice from my cup with such force that the brand new bowl cracked right in two. She had already broken two of my other round plastic bowls doing the same thing, so i had had her go out and buy three more new, naturally i would be upset when she turned around and broke one of the new ones she had bought me just that very day, by pounding my ice into it too!!

All of our conversations were arguments and debates, and me always having to correct her and set her straight on things. Even when i would tell her my dreams, she would interrupt me with one of her tangents. or tell my why i would, for example, hate it if i lived in Michigan, Rhode Island or New York. She does not know whether or not i would hate the experience of living where there are actual seasons. Even watching movies and YouTube videos with her were a tension, because she would always randomly and incessantly talk during them, and interrupt me to have me run the movie or video back to a part she missed. I couldn't even read a post or interact on Facebook without her coming up and talking to me when she knew i was busy. When we had a conversation, it was always me trying to talk to be heard over her loud and very domineering voice. She was always bossing me around, giving me unwanted advice, and talking over me, not letting me explain things before she would start jumping to conclusions and start making her mostly wrong assumptions. And she did intimidate me into getting rid of all of my candy except for my peanut butter M&M's, all of my potato chips, and in giving up all soda pop and my beloved Slurpees. Look, i think that my lymphedema is terminal anyway, okay? I at least want to die happy, being able to enjoy my sweets and my frosty carbonated drinks, pleeeeeeeeeeeeeaaaaaaaaaase!!!!!!! I'm an adult, for Peter's sake, don't i have the right to eat and drink what i want???????

She yelled at me and argued with me when i asked her to plug the new back up battery power supply strip for my lift chair into the top outlet, and plug the air conditioner plug into the bottom outlet....she kept arguing that both plugs would not fit. Come to find out,, she had plugged my universal power supply strip into the bottom outlet, so that my A/C unit's plug could not go in the top one. My neighbor came over and promptly was able to put the power supply strip one on top, and viola, my A/C unit plugged right into the bottom outlet, so i was able to have A/C on Friday when the weather got up to 94 degrees. Rose was actually going to let me go without my much needed air conditioning in my own home too....when she knows it is a neccessity for me, because i break out into bad rashes when i am overheated, and the heat also makes me physically ill and want to literally pass out.

And then she yelled and screamed at me all the way down to the bank that one Monday, over me really needing to have my music that day. I had had a bad morning that day, so that was one of the days i really wanted to be able to hear my own tunes, because i knew it would comfort me to hear my own music. Instead of her calmingly explaining to me that there wasn't time, she jerked her long pointy finger at the dashboard clock and proceeded to yell at me: 


All she had to do was either get the iPhone wire for me, and i would of plugged it in and we'd be on our way, or just gently explain to me "Melissa, i am going to need to hurry to get you down to the bank and back because i need to get home to pick up my boy, because there isn't alot of time left, but i can try to get the cord for you at an intersection if we are stopped at a light. Is that a deal?" I would of been receptive to that. Instead, right off the bat, she started screaming at me like i was a piece of dirt. And that set me off.....and the rest of that story is in my last note.....

It was clear by the way Rose often would lose it with me and yell at me and talk down to me that she didn't respect me. I found out that she actually thinks that i use my autism as an excuse for everything, and that she didn't like having to wait around for me to "process through things". Her exact words were: "I don't get paid to sit and wait while Melissa 'processes'," and "I don't get paid to go get Melissa takeout and Slurpees!"

I am so glad now that i didn't move to her town, because i know now that she would of pulled this same thing on me when i was all settled in over there, and then i would of REALLY been stranded without ANY way to fend for myself. At least, with me still here in Santa Maria, i have my friend next door who shops for me, shares some of her dinners and sodas with me, she gets my mail, and mails what i need to have mailed, gets my prescriptions.....and she takes my trash out for me on trash days. She also plugged my A/C in so i could have relief Friday when it was in the 90's. Here in Santa Maria, i also have KT, my ex-caregiver, who is going to try to work me back in at least one day a week after the 7th. KT even took me to the bank on Friday. My next door neighbor is going to do my shopping tomorrow.

But now i am extremely terrified of Rose. She forgot to take her .99 cent Trader Joe's shopping bag, and her $6.99 Trader Joe's cooler bag when she was last here to work for me. We had rented a car three weeks ago, so that she could take me up to Pismo in a comfortable car, and it was agreed that she would reimburse me $153 of the deposit cost. She never did. When i tried to explain to her in emails how she had hurt me, she came back writing hateful things, and then last week, she began sending e a series of harassing emails. She has also gone to several of my friends and told them that i am unfit and unwell, that i belong in a mental institution/long term care facility.

She walked out on me. She left me abandoned. All because she was not willing to respect and understand my autism, and learn how to deal with my meltdowns.

I may not be having nightmares over her yet, but i am getting alot of sick stomach spells again, ones where i am in excruciating pain and then nausea, and diarrhea. This last stomach spell even made me break out into hives all over my body. I had to go to the hospital and be given Benadryl, Zantax, and Prednisone, to calm my hives down. The last time Rose's and my friendship ended, i had those same bad sick stomach spells for several months after, where i would almost break out in those hives. I do feel that there is a very demonic force in some people, and that Rose has a very demonic force inside of her.

She can be mean. Very mean.  And her meanness.....anyone's meanness, affects me more than anyone can know. It hits me like an 18-wheeler truck, and it takes me alot of time to get over it when people come at me with meanness. This is why i am scared to have her come to get her bags and her timesheet signed. Not because i want to keep her bags from her. Because i am not a thief. I am PETRIFIED of Rose now because of how mean she got with me.....i don;'t want her near me.....

You cannot yell and scream autism away.You cannot shut up a meltdown by telling us, ordering us to "You need to calm down now!!", and "Focus!! Just FOCUS!!" Noooooooo, it doesn't work that way!!!!

You cannot and will not take my autism away....just as you cannot expect me to take my autism on and off, like one does a sweater or jacket.I was born Autistic.......i am going to die Autistic. it is time that this world open its minds, hearts and souls to us, and listen to the stories we have to tell...because only then will you learn that we are people who have a voice.....and that we matter!!!!! 

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