Why We Need To Rise Up And Be Angry---My Caregiver Story---Part Three

In Parts One and Two of this series, i told my story about all of the caregivers i had up to Rose. In this installment, i will tell about how i felt the whole time that i was once again without a caregiver, which was from the last week of April 2013, through the whole month of May 2013, when i finally messaged a local TV station, and they did two stories about my plight. And i will tell you all about Jee, JuJu, their friend Cecily, LeeLee, and KT's return as my caregiver.

When Rose left, i had to call the general surgeon and cancel my appointment to have him look at my left thigh lump. I had had high hopes that he would look at the lymphedema tumor, and help me get to a surgeon who would remove it so i could have my mobility back. I also now had to rely on my next door neighbor and longtime family friend, H, who was now angry at me over Rose's leaving, to shop for me once a week, and she also got my mail once a week too. Luckily, KT had become friends with me again, so KT was able to get me to the bank on May 3rd so i could have my money for the month of May. I also got all of my cashiers checks for my bills so that i would not have to worry about whether i could get to the bank to get those. I pretty much pay a rounded out amount on all of my bills each month, as i know what amounts they are going to always be.

The first three weeks of May that i was without a caregiver were awful, with me getting up late, and sleeping all day long. Most days, i sincerely wanted to die. H was not being nice to me at all during this time, because she was always throwing Rose up to me...."Well, if you had made the effort, she would still be your caregiver," and other cruel remarks...."Melissa, next time you need to wait till you have another caregiver lined up before you fire your caregivers." She was always scolding and criticizing me. And then she was always telling people that "Melissa likes to twist things," that "Melissa loves to cause drama," and that "Melissa uses her Autism as an excuse and a shield." 

I didn't get to go anywhere for that whole month. I was just stuck at home. I began in earnest, to beg my mom to sell these houses, so i could move out of state to a state where i would be able to get help and services. I also began to sock more money away in my kitty so i could maybe escape here on a bus to the East Coast, because i figured if i was there, that i would have more of a chance of getting help, since i would be going to a new place essentially as a homeless person. Then i wrote a message to all of the local TV stations. To my pleasant surprise, the TV station here in Santa Maria, did my story...twice, in two parts. They even interviewed a local psychiatric office, who said that my caregiver issues were never my fault. That it is the fault of caregivers not being trained in how to deal with Autistic adults.

In the meantime, it was becoming so unbearable to depend on H to do my weekly shopping and mail pick up. Because she would buy the wrong things,  put my bread in the bags with it smashed, which i hate, and she would complain incessantly about having to do these things for me. When she wasn't helping me with my neccessities, she ignored me completely, never ever did she bother to invite me to go to church with her and her family, nor would she ever bother to have me over to hang out at her house. She wanted to be strangers with me, even though my family and her family grew up together!! Even though H and i used to have an awesome friendship. She even went so far as to block me on Facebook!! All because of whatever Rose must have told her!! I was miserable now because of H!! Ane because i had NO care!!

The last week of May, my sister had a brilliant idea. She told my mom to call the local Catholic convent and tell them my plight. She did, and that very afternoon, i was so blessed to receive a visit from two sweet ladies, whom i will call Jee and JuJu. JuJu did not have a car, but Jee did, so i hired Jee as my new caregiver. I was back in business!! I also kept after KT to try to hire her back also. Because i missed KT, and wanted her back!!

I was happy again.

Jee took me everywhere i needed to go, and i was able to indulge in my favorite daily treat again with my meals: the Slurpees. However, like Rose, Jee also asked for gas money from me each week, to the tune of $20 per week....which was still alot for me to pay. Jee cooked very delicious meals for me, and even colored my hair again, so i could still call myself a redhead.

But then, the honeymoon was over: alittle more over two weeks into her job with me, she came to my door, crying, saying she was going to be kicked out of her apartment if she didn't have $525 to pay the rent that afternoon. Feeling sorry for her, i lent her the $525, and wrote out a promissary note so she would have to pay me back. She did pay that back to me a week later, but then about 10 days after that, she began turning moody, and suddenly asking me to pay her $100 a month for her gas. In addition, she was now coming, and doing very sloppy jobs at cleaning my house and kitchen stove. My dishes weren't even being washed properly anymore, and there was grease and stickiness on the handles of my kitchen drawers and faucets. 

I called JuJu, who was more than happy to take over. She took over from July 2013 through the second week of September 2013. At first, because she still didn't have a car, she would bum rides everyday with her other sisters, and with friends, to run my errands and get my dinner and Slurpees. For those rides, i only had to fork out $5 to $10 a week for her sisters' and friends' gas. JuJu got my house nice and clean, and my stove, faucets, and dishes all sparkly clean again. Then she began to use her uncle's van, which was a real gas hog, and then i once again had to pay her $30 to $55 a week for her gas. In addition, now that her mother was taking me to the bank and to two of my doctor's appointments that i needed to go to, there were additional charges to her mom on top of the money i gave her for the van gas....$10, then $17, and then, finally $25, then $30. Then JuJu began to get moody with me, then she got tired of me too, and shoved me off on her friend, who i will call Cecily. She made sure i knew though, that she and i were still "good". (On good terms)

Cecily was awesome at first too, and she gave me very good baths. She remained nice for her first month with me, in fact. She began working with me the third week of September 2013, and all through October 2013. I loved that she had a car, and that i could once again get all of my errands done easily. She also colored my hair for me. 

For the gas, she only charged me $10 to $12 a week. But then, after the first week of October, she came to me saying that she was now also without a car.

OH boyyyyyyyyyyyyyyyy.........not again!!!!!!!!!!!!!!!

From the time that i tried in late April of 2013, to get in with the general surgeon to see about getting my lymphedema leg tumor removed, to the end of last year, i had made several attemts at making appointments with him, only getting to see him in July, when JuJu's mom took us to see him....and then again in December, when KT took me. (More on KT later)

I had to once again cancel my appointments with the surgeon. I had to put all of my medical appointments on hold. With Cecily now without a car, she began borrowing her boyfriend's dad's van to run my errands, and if i needed to go anywhere, she would get the use of another car to take us. I now had to pay Cecily $15 aweek, sometimes $10 more, for the gas for that van. 

One day, she was a total no-show. In a panic, i had to have JuJu come in for two days, and pay her out of pocket, $17 for that Thursday, and $40 for the next day, because Cecily was unable to get a ride to my house, nor could she even get to a phone to call me to let me know she wasn;t able to come. And JuJu refused to let me have IHSS pay her for those two days i needed her!! The stress from that REALLY blew me out of the water. I had to have one of my Facebook friends call Cecily, to make sure she was going to come back to work for me, and to make sure she would have transportation. 

My finances took a real hit when i had Jee, JuJu, and Cecily as my caregivers. Because of how much i was charged, several times i had to go to my bank and take out cash advances from two of my credit cards, in order to be able to afford to pay JuJu and Cecily for their high gas charges. I could no longer afford to pay more than $40 a month on each of my credit card debts due to this. I almost defaulted altogether on my debts for the first time ever in my life due to all the money these ladies were taking from me.

The kicker is that they all threatened me that if i did not pay them these charges, they would not run my errands or get me to my bank and post office. In addition, i had to feed them also, because they were always out of money to be able to afford their own food.

Then Cecily turned moody and snotty, and i had to let her go. KT came back on as my caregiver.....and all was as right as rain. Or so i thought.

To be continued.....

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 having...so, 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 day...as 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 console.....in 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 ones....so, 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: 

"LOOK! DO YOU SEE THE TIME? I HAVE JUST ENOUGH TIME TO GET YOU DOWN TO THE BANK AND BACK! THERE WILL BE NOOOOOOO MUSIC TODAY!"  "THIS IS MYYYYYYYYYY CAAAAAAAR.....AND YOU WILL NOT HAVE YOUR MUSIC IN MYYYYYYYYYYYYYYY CAAAAAAAAAAAAR!!"

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!!!!! 

Why We Need To Talk About This---My Caregiver Story---Part Two

My story continued from Part One. (For Part One of my caregiver story, please scroll down to the blog below this one.)

After i fired Jessica L., i was without a caregiver for two weeks. I was a wreck....because Jessica L. still lived next door to me, and was still doing things periodically to antagonize me....but thankfully, a family friend helped by checking my mail once a week, and shopping for me. I had to make frequent phone calls to order food to be delivered to my house.....otherwise, i struggled to make things to eat that were the easiest for me to do.....mostly tuna sandwiches, ham and cheese sandwiches, also Lean Cuisine Chicken Chow Mein, and Stouffer's spaghetti with meat sauce that i could just pop into my microwave....things i could just heat and serve.

But I was so lonely. I cried alot. I was still even mourning the loss of my friendship with Roger. A part of me still even wanted to mend fences with Jessica L., and give her one more chance. All of my friends advised me not to go down that road again. And i didn't, because Jessica L. was still being mean to me. She would leave her very bright backyard light on so i could not enjoy looking at the stars and moon at night anymore, and bang on her walls alot.....and she also loved to even make her car alarm go off all of a sudden. And she loved to yell.

I also missed my long shiny red hair. My mom had to buy and ship me three knitted caps to wear, because my head was now so cold, with my hair cropped so short that it even had actual bald spots on the sides. Yes, i was that distraught over the way things ended with Jessica L. that i literally tried to scalp myself. I hurt that badly inside......mentally and emotionally from her cruelty towards me. On top of Roger's cruelty.

Enter KT, my next caregiver. My In Home Care worker called to let me know she had found a lady

who understood Autism,

who would be nice,

but who would know how to set boundaries and remain professional,

as i should not ever become friends with my personal care assistants anymore.

KT started on Nov. 15th, 2012. She was nice, but she kept asking me alot about my meltdowns and whether i needed to "vent" or have her "problem solve". She liked to get me out of the house too, and she liked to let me have my favorite treats too. But she was strict about doing nothing but working while she was here, and she did do an excellent job at cooking, and housecleaning...so much so that my house was spotless. She also was okay doing my baths, and even got me into the shower a few times. But our relationship lasted till the end of January 2013, when my meltdowns due to the street and my house being ripped apart due to plumbing issues, got to her, and her friend NBee both, who KT had gotten me hooked up with as a secondary caregiver.

The end of KT's and my caregiving relationship ended abruptly on January 31st, when KT called in sick, and i could not get NBee to fill in either.....suddenly leaving me without care again.

I REALLY flipped out!!

KT began ignoring all of my VERY frantic emails and calls, and NBee who said she was at the hospital with her mom, rudely hung up the phone on me.

My paranoia got the better of me, and i jumped the gun and i fired both KT and NBee, as my high school friend who was then back in my life for the third time, was more than eager to take over as my new caregiver.

I will call her Rose---not her real name either.

Rose took right over....but now i had to suddenly become a morning person and get up at 8:30 AM every morning, because of her youngest boy being in school and he needed to be picked up everyday at 2 PM. Rose wasted no time in talking me into having more anger and resentment towards KT....she even had me convinced that KT was neglecting me by ignoring a growing gash on my lower abdomen where my underwear were cutting in...a gash that was quickly becoming very infected.

Rose, who was nice in the beginning, took me to the hospital, where i was admitted for three days, the first week of February 2013, and i was placed on antibiotics and diuretics. In the hospital, i began to lose weight quite quickly, and my leg lump and leg swelling even shrunk to half the size they had been before my hospitalization.

I loved how i got treated in the hospital by all of the nurses and doctors. And loved how nice Rose was to me during that time. Rose even promised she would never be mean to me this time, that she had learned her lesson from her first two times friending me in Feb. 2010 (when we stayed friends till a huge loud blowout happened between us in April of 2010) and the second time in Oct. 2010 (when she and i stayed friends till we had a HUGE screaming blowout in February of 2011).

The thing with both Rose and Roger.....is that both Rose and Roger were very much PAID FRIENDS. They both took huge sums of money from me, as well as food and candy, and snacks as well. Everything they ever did for me seemed to have a price tag on it. In addition, whenever Rose and i went out to eat, i always had to pay her way, and if her kids were with her, their ways too. Roger would get nasty, refuse to do stuff, or do a sloppy job at what i wanted him to do, if i did not give him acceptable compensation. And Roger got in alot of ugly bad moods in which he would become verbally and mentally abusive towards me...and this would happen on a mostly bi-monthly basis...seriously. Even so, when he was nice, he was a beautiful soul to have in my life. Even so, i still both mourn the loss of his friendship, but at the same time, i am now seriously frightened of him, because when he turned on me for the last and final time in March of 2012, his mood and emails were so hateful and sinister....i have never gotten over that. I still have bad nightmares about the way he began to behave towards me. The way he suddenly began to deliberately blare very loudly, the music he knew i hated.....the way he suddenly began to emit the same type of loud banshee yells he knew scared me to death that the men do from the auto shop across the street......and again....there were those awful emails. And all of the awful threats he began to leave in the comments on my YouTube videos.

Rose, my high school friend, who also has a Jekyll-And-Hyde personality, lives in a town 25 miles away, so when she became my caregiver, she was always asking me to give her $40 dollars a week for her gas.....yes, she did refund all of that money back to me....but whenever she would come on weekends to be with me when i would get scared to be here because of Jessica L. and her family next door....she would charge me $60 for each of those weekends...and that did not ever get paid back to me.

When i sold my car in August of 2012, i managed to keep most of that money saved in a private savings to save up for a new iPhone, a new Apple computer, and an iPad. But when Rose came onboard as my caregiver, that money began to drain lower and lower, till i no longer had a solid cushion. In fact, after i came home from the hospital in February 2013, Rose started in with the yelling again. Whenever she would realize how shaken up it would make me, she would stop herself. But i noticed how she also still yelled at her kids....both of whom are also Autistic. In her fits of rage, she began to break several of my plastic Rubbermaid containers, pounding ice in them to break up the ice for the fruit smoothies she began making me....and began to turn most of our conversations into these awful raging screaming arguments. She strong-arm talked me into getting rid of all of my snack food and candy, taking it all home with her. She also refused to buy me my Slurpees which i loved, too. In March 2013, the abuse stopped for awhile....but then in April 2013....it started right back up. We had one last good weekend in early April, where we rented a car to go to Pismo Beach. I agreed to pay for the car rental, with the agreement that Rose would refund the deposit, which ended up being $153. I never got that money back from her. In addition, once again, i had to treat her and her son to their dinner that evening. In late February 2013, i had gone for an ultrasound on my left leg lump, to see about getting surgery on it, and was to have an appointment with a general surgeon in late April 2013, but by then Rose and i had had two new huge awful blowouts, even worse than the ones before them.....one of those blowouts was hers and my Horror Ride To The Bank on the last Monday in April, where she screamed her head off at me so bad, just over me wanting to listen to my music on the way there, and then one two days later................where she ended up walking out on me, leaving me, this time, without a caregiver for one whole agonizing month. In addition, i now had my family friend, who was now renting the house next door to me, suddenly on my case over this....my friendship with her was now permanently ruined due to Rose.

Rose went onto try to turn all of my Facebook friends against me. She did not succeed, although i did lose one of those friendships, when one of my friends did delete both Rose and i, because she no longer wished to get involved with the drama. I can write much more about Rose...but i already have, in earlier blogs.

The friend i lost was the lady who loved to come from the Central valley of CA to take me to Pismo Beach, Avila Beach, and Cambria. I miss her......i miss her alot.....

To be continued......

Why We Need To Not Stay Silent About Abuse---My Caregiver Story---Part One

I think this time, i have finally found new caregivers who are going to truly work out for me. At least i sure hope so. It took me having to finally post on a local FB Classified group to find these new caregivers.

But my quest to find good quality personal care assistants, has been a long rough two-plus year road for me......

a road that has been mostly one majorly huge and unreal nightmare for me.....a nightmare which actually started out in November 2011, with a private caregiving agency here in town, where the director who i shall call ND, was one of those charitable do-gooders types who decided to take me under her wing so she could fix and cure everything that ailed me.

Yup, that's the truth.

I did okay with her, until i managed to test her patience one too many times.....and then, wham!!!.....like alot of people before her in my life, who, because they don't get Autistic people, and don't **want** to get Autistic people, turned right against me....

this was because,

1), i dared to call her too many times for things like my food order gone wrong at a pizza joint, and my street issues, and then,

2), my caregiver who i had go into the grocery store for me, knowingly got the wrong milk for me, and waited till we got clear home to spring this on me!! The ensuing meltdown i had from that episode, caused the caregiver to instantly walk out on me, and then ND and the agency's director both promptly kicked me to the curb.

Because my meltdown frightened them all too much.

My mom immedaitely had to search for another private agency, as i was still not yet approved for IHSS services.....and my physical health was deteriorating so much by that time, that i was driving less and less....so, i really needed personal care----and ASAP.

A second agency was called, and that man decided, instead of coming to my house, to interview me over the phone, and when he did, and found out that i live across the street from the Big Bad Auto Shop, he began to lay into me, judging me and accusing me of having way too many boundaries. When i melted down because he wouldn't listen to me, his reaction was "Oh, we cannot subject our caregivers to this kinda thing!" And he hung up on me, leaving me in tears.....

My mother found a third agency in a town 22 miles North of here, and they were more than willing to work with me. We went with them. I finally had two awesome caregivers who came in two to three times a week. But in the meantime, i had another HUGE blow come my way, when my then friend of six years, "Roger", also not his real name, suddenly and inexplicably turned against me.....

Suddenly, i went even more downhill. I could not understand why Roger would turn on me. I tried to find out. I wrote emails to him. I had my mom call him. Then he wrote back a series of ugly mean emails that really knocked the wind out of me. I have saved those emails for legal purposes. He also began to come onto my YouTube channel and flag my videos and leave nasty threatening comments on them, threatening to have me yanked off of both YouTube and Facebook for merely telling my story, which i had a right to do, as i was using aliases and being as careful as i could.

I had to tell my story, and he would not let me.

Even though he had caused me holy hell.  

At that time, my left foot had developed a sore so painful on it, i could not walk well anymore, and when Roger turned on me, i actually stopped driving. I was now literally afraid to even get behind the wheel of a car and go places by myself anymore.

I haven't driven since. I sold my car that summer.

And i got approved for IHSS, and then that started a whole new level of nightmares for me. I went through three awful caregivers, none of whom lasted even a day, because they were so rude and hateful and had NO clue....and then came Jessica L., in May. She was a sweet angel, for the first two months she worked for me, until she moved next door to me with the intent to help me even more. Things quickly became another nightmare, as she began losing her temper with me, and with more and more frequency, yelling at me, and calling me names. The kicker came when she told me to take my Autism off and start acting normal, and then when i was naked in my bedroom, for my bed bath, she lost it, calling me a smart ass, and threatened to leave me there naked to fend for myself. Seriously!! I fired her shortly after that, because i knew that with her already yelling at me, that she was going to progress to calling me the R word and then hitting me. I had enough......i went into a tailspin......i went into my bathroom and chopped my hair all off, ripped some of my clothing that i loved to shreds.....i was broken. Broken to the core now.

To Be Continued......

If I Could Do So Tonight, I Would......

If i could do so tonight, and i still had my car sitting in my carport in working order and could still drive it.....i would take all the money i have, pack my car to the gills, and head straight up to Idaho to temporarily live with my mom and nice sister, or in a hotel near them, only until i am able to get myself on to Michigan.

If i could do so tonight, i would be in a quiet warm house with all nice neighbors all up and down my street who treat me like i am one of their family. Not this frightening hell hole with all these mean men who are tormenting me to death. 

If i could do so tonight, i would be up at the coast listening to the waves outside of the hotel window i would have rented for myself for the whole weekend.

If i could tonight, and i had the money, i would see to it that i was first set solidly up for life, and then if i had enough left over, and if it was alot of money, i would start up community based housing and support services that would give all Autistic adults real time help, advocacy, vocational training, life skills training, all assistive speech technology, all the tools needed to be able to have a decent life. This program would in NO way be used to fix, cure, or do away with us, but instead, it would be a safe place where we can be who we are. In addition i would see to it that our government would include extensive civil rights laws that would really punish ANYONE who EVER bullied, tormented, or held us back in any way. Anyone caught abusing us, and treating us as less than would be held accountable.

If i could tonight, i would do all i could to make this world an Autistic friendly place. No more would we be subjected to caregiver abuse of any kind, or any abuse, period!!

If i could tonight, i would be in Michigan living near my friend and her family, and we would do all the fun things we as the non-biological sisters would do. We would spend many a night gazing up at the stars in either my backyard or hers, and when the Northern Lights are putting on their show, we would be marveling in awe at them together.

If i could do so tonight, i would teleport myself all over and see all of my Facebook friends.

If i could do so tonight, i would do all of these things.....all of these things......all of them. Every single one of these things.

Seriously.

More Thoughts On Why I Need To Make This Move To Michigan

More random thoughts from me, an Autistic adult who will be 54 years old in May......who refuses to shut up and go away just because some people want me to!!

The following is taken from a message i was just posting to my friend, and re-edited into this blog:

First of all, when i move to Michigan, i will want to live where there are the fewest power outages possible, as i majorly freak out if the power goes out in the middle of the night. I would want to stock up on power failure lighting and keep enough batteries on hand for if and when power failures occur. I know Michigan has alot of storms, both in the summer and winter, so i want to be prepared. And i want to live where there won't be any risk of floods, as that will freak me out too. I am paranoid about fire, floods, and power outages, as well as certain loud noises. Like the ones i have to hear here on my current street.

For all who don't yet know, the reason i am moving to Michigan, is because, as an Autistic adult, i don't have any services and supports here. I don't even have much support from my city's police---more on that later.

MI has all kinds of supports, programs, and services for Autistic adults.

Here in CA, i don't even have family to call upon, as they all live out of state now, and the one brother who still lives here, now ignores me too. The friends i do have here, are very few, and i am not very close to any of them....and they are all always very busy with their busy schedules and lives. So, i cannot call upon them either.

Here in CA, i have had to endure the trauma of having several of my caregivers walk out on me, and i also went through three caregiver relationships where i was abused and exploited---big time.

I also had to endure the loss of several close friendships that really meant the world to me.

I have also had to endure several neighbors bully and terrorize the living daylights out of me also, for the past 23 years of living in my current neighborhood.

I have had to endure the trauma of being denied healthcare time and again, and as a result, watching my legs swell up, because of being denied treatment. Now i have a basketball-sized tumor on my left inside thigh because of the lack of medical care, and my inability to be able to make all of my neccessary medical appointments.

I have had to endure both my physical as well as mental health go downhill because of all of this.

I am anxious and depressed all the time.

My only hope at being able to salvage what is left of my health and well-being is to move out of my home state...to the state of Michigan.

I know that when i am in Michigan, that the friend i have there, and her family will NOT leave me hanging and stranded whenever i have needs, and i also know they will not EVER dismiss me as being a drama queen or too high maintenance. Nor will they EVER tell me that i am hiding behind the shadow of my Autism, or using my Autism as any excuse.

My other reason of choosing Michigan, is that i really love the scenery there, all of it, and do want to explore that state. I also want to get my life story as an Autistic who has lived my life misunderstood, and who has fallen through the cracks all along so far,

published,

and i want to write and pursue educating the world about Autism and the plight of Autistic adults, even more after that.

I also want to get more into computers and graphic design and art.

I know in my heart of hearts, that i will have a fresh start in Michigan.

I realize i will be leaving a state that i have been familiar with my whole life, as well as the perfect weather we have here most of the time. In Michigan, i will contend with snow, ice, and subzero temps in the winter. And humidity, thunderstorms, and mosquitoes in the summer.

But i have to go.....too much has happened here now that has ruined things for me here, too many not just bad memories, but very traumatic memories. It is my strong view that those who i have had bad problems with here in Santa Maria's Good Ole Boy Network,

which does include

the police,

the ex-mayor,

schoolkids,

the auto shop,

and a few other families,

including the family of the mean girls who started all of my troubles here back in April of 1992....have all helped to ruin any chance i have of success and a decent life here.

So yeah, i need to move.

Michigan seems to be my ticket to freedom.

Now I Am REALLY Angry....I Got Told I Am "Too High Maintenance" Again!!

More rantings from a soon to be 54 year old Autistic adult who is fed up with being ignored and shunned by my own community.......

......And....the next damn bozo who tells me that i am "TOO high maintenance" again, is going to get a damn good punch in the face!! I will defriend, delete, block, slam the door shut in your face, yell, tell you to eff off, and whatever else applies...because.....for the last time....i am NOT TOO HIGH MAINTENANCE....I AM AUTISTIC!!!!!!!!!!

Today, i was visited by a church pastor and his wife. Throughout my almost 54 years living on Mother Earth, i have learned to develop a strong distrust of teachers, cops, church priests, nuns, pastors and elders, because i have been hurt like you wouldn't believe in all kinds of churches, by all kinds of teachers, and all kinds of cops....and because, in most churches, they seem to want to cure, heal, and fix you so you will be saved and cleansed of all sin and imperfection, wiped clean, so to speak. I do still believe in God, and believe in Jesus as my Savior, oh yeah, that will never change, but i now have even more of a jaundiced and bitter view of American Christianity and American churches....because of how many times i have been misjudged, rejected, told i had demons in me, told i needed to have my Autism prayed off of me, told i was too needy, and too this, and too that. F**k it all!! Today, i gave this pastor and his wife a chance, letting them come into my home because i was told they did care, that they did want to come see me, that they did want to get to know me, that they were going to help me in any way, shape and form they could. I was told i was a blessing to them by the lady who had talked to him about me. So, i gave them a chance, because i still like to be fair and give people a chance. And i really and truly thought that this time would be different, that these two would listen to me, and accept me.

They did listen. They did listen to what i had to say.

I told them all about how i am housebound because i cannot walk, cannot walk to a bus stop, and how i now don't drive because of my leg tumor, nor do i have a car now, because i sold it in August of 2012.

I told them that i can only get out when my caregiver is here.

I told them i am all alone on weekends, lonely, and that i would love to have friends who would come see me and take me out just so i can be able to get out of the house once in awhile on these lonely weekends.

I told them how i cannot get help and services in this area, and i needed people to go with me to doctor's appointments and other places that make me nervous to go to by myself because i am scared to go these places all alone, because i am often rushed and treated badly, especially in medical offices.

I told them how i needed help to get my things packed up to get them moved/shipped off to Michigan, that i cannot do it all myself because i cannot stand, bend down, lift, etc. I told them why i am moving to Michigan. Because i am dying of lonliness and my needs are not being fully met here.

I told them all about the street and my sensory issues. Three hot rods roared through here while they were here, so they got to see how it affects me to hear that noise.

But the light bulb of understanding and compassion was not going off in their heads. At all. Even though they kept saying with their mouths that they understood, i knew they didn't "get" it. They both kept saying there was nothing they could do for me, because they were afraid of doing the wrong thing, so they would rather not get involved. And they kept saying there are only 50 to 60 people in their church. And that it is a very conservative church, complete with piano and organ. That they don't have rockin' worship with a full contemporary band.

They kept saying i was too high maintenance. They kept saying that they do not understand Autism, and are afraid of helping me because of that. They said they don't help elderly people either out of fear that they will fall, and they will do the wrong thing when they fall.

They even went so far as to tell me right out that they were actually not looking forward to seeing me this afternoon. Yes, they really said that. They said that because they already knew, before seeing me, that i would be a "high maintenance" case, and knew they would have to be brutally honest with me.

All that they could offer me this afternoon, was to talk about Jesus and do a devotional with me. All fine and well, but i was having them in my home to try to get my very real physical needs taken care of. And yes, he told me they would mention me in their group meeting tomorrow, but he said that he highly doubted that anyone would want to help me, because people are just too scared off from those who are.....**DRUMROLL PLEASE**.....here's the word again......"too high maintenance"!!

And the whole entire time they were here, Pastor's wife kept looking at me with a strange squeezed-face smiley face that i didn't like at all. That seriously added to my discomfort. I also kept noticing him looking at my mouth like that disgusted him too. Yes, i have very bad chipped teeth in front, and they are discolored, again because in CA, we adults lost our dental benefits for a very long time. For years we were without dental benefits.

The sky outside showed no sun at all today, adding to my growing sinking feeling of despair.

I felt so uncomfortable right here in my own home, and like a third class citizen being visited only as a courtesy by the rich stuffy folk. That was exactly how i felt. They actually acted as if i was a huge problem that they wanted to get away from as fast as they could. They seemed to want to just pray over me, then just leave, and drop me like a hot potato.

To top it all off, i told them that my mom had blessed me with a bag of organic puffed rice cereal, and i had opened my box to discover this, only after my caregiver had gone home, so it was too late to ask her to get me some milk for my cereal. Pastor and his wife could not find it in their hearts to even make a quick run to the closest store to get me one small half gallon of milk so i could have some cereal. I would have paid them for my milk.

Boy, and here i thought that churches are supposed to be hospitals for the weak, vulnerable, poor, hurting, widows, and orphans!!

This is why i need to move out of here. And desperately. Because this kind of thing keeps happening whenever i endeavor to try to reach out for supports and services. Because i am alone and cut off here. My elderly mother and two nice sisters live out of state, and the rest of my family also see me as a drama queen and think i am too high maintenance. Yes, THAT word again. If i didn't have a caregiver, i would definitely die. 

I hope i can get my story to the news media so someone can help me, please.

Because i am not crazy; i am not high maintenance; i am AUTISTIC.....and i WILL perish if i cannot get to Michigan soon.