Saturday, July 4, 2015

More About My Last Caregiver…And To My Future Caregivers

**PART ONE**
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.
**PART TWO**
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.

Monday, June 22, 2015

An Open Letter To My Last Caregiver, & To All Caregivers To Read

Dear Last Caregiver,

The afternoon of Tuesday, June 16, 2015 was such an emotional blow to me that i don't think i will ever be able to recover from this time.

What happened broke me into pieces. I never saw it coming. Not from you.

You walked out on me, abandoning me and leaving me to fend for myself.

It was a huge shock, especially since you promised me, time and again,
that you would prove to me
that you were going to be different than all of the other past caregivers who abused me,
....................and that you would never, ever, ever....................................
just walk out on me leaving me hanging with no food to eat, and my needs unmet.

You made these promises to both me, and my 86 year old mother. 

Yet Tuesday you did just that to me.

I guess promises....are made to be broken.....

that is what i have now painfully learned as my awful truth.

I am so deeply hurt, so deeply angry, and now you know exactly why i have never fully been able to trust people. And now more than ever, it will be even harder for me to trust again.

I do have feelings, and i cannot be expected to live like this indefinitely.
In this constant state of fear.
Panic.
And anxiety.
I am a human being who needs help so that i can stay alive, living in my own home.
Because i can't walk very well, and because there are things i can't do for myself anymore.
Why do i need to be punished by being treated like shit, like i am less-than, and should be kicked down,
just because i need help to be able to remain in my own cozy home around my own familiar safe surroundings, where i can feel safe?
I have a right to live in my own home, and to feel safe, and treated with respect, and with dignity. 

Why did you start to see fit to talk over the news and weather whenever i was trying to hear it, just because you didn't like the news channel i watch?
I wouldn't do that to you if i were in your home.
You also seemed to hate my eclectic mix of indie rock alternative music,
and hate that i watched certain shows and cable channels all the time.
You would ask me to keep my music down so low, that i could never enjoy listening to it while you were here....
you would ask me to change the TV channels i was watching too.
You would not let me go in my own kitchen when you would cook for me, which you did do in the beginning.
You would ask me not to make my unique bull moose noise, sing to match the room accoustics, which i call "doing my chestnut noises" or do my unique burps, because you hated all of that too.
I could even sense that my hand-flapping got on your nerves too.
I knew you had a temper, and lots of anger and rage.
But i kept you on because you were nice too, very nice, and would always promise me so many, many things.

When you first came to work for me, you drew me in with all of the promises, kindness and compassion you showed me at first. I loved your cute personality, your wit, your sense of humor, and your experience working in the medical field.
I loved the way you promised you were going to get a car, and then we were going to go all kinds of places,
and you were going to bake and cook some really cool things for me, too....
your own special recipes of meatloaf, casseroles, bacon-wrapped cream cheese jalepeno poppers, brownies, cakes, cookies, etc.
Yes, you did have a car within two weeks of you starting work with me.
And you did cook enchiladas, spaghetti, and Sloppy Joes for me too at first. 
But the special homecooked **You** recipes never got cooked or baked for me.
And we have only been out to eat three times,
but never ever have you been able to get me to the ocean, which you know i love.....
and haven't gotten to see in two years.

And then, the bad moods started. I have always hated the bad moods. Because that is when i got picked on, scolded, and criticised in my own home, in front of all of my things, my TV, my computer, all of my things........i got tone policed, accused of being too snippy, shouted down for my opinions, told not to talk about my Autism so much, told what to post and not post on my own Facebook wall, and etc.

One day, when you took me to my doctor's appointment for the first time, you got angry with me because when we went to sit in the doctor's waiting room at the clinic, which i told you makes me nervous whenever i have to sit in that waiting room, i asked you to sit by me, instead of way over in back of me in another chair, where you were.

You got angry because you felt i was bossing you and treating you like a child, which wasn't the case. I needed for you to sit close to me because i did not want to sit alone by myself.
When we got back out to your car, you snapped at me to hurry up and get in the car, knowing full well, i can't move fast because of my mobility issues, yet you hurried me anyway. And then, because you were afraid of getting pulled over for not yet having insurance on the car you had just bought, you continued to act out by yelling and cussing other drivers out all the way back to my house----and snapping at me.

Once back at my house, i finally got you to understand why i needed you to sit by me. But you still told me that in doctor's offices, i will have to wait, and i will just have to learn to deal with that. That was ableism.

The bad moods started to come more and more. But each time afterwards, you would feel bad, be sorry, apologize, and get nice again.

I remember we had many good times laughing and joking, and teasing each other. You would even let me play with your hair and look at the shines in it. I loved those times with you.

You even talked me into getting in the shower and taking showers instead of the bed baths. We began doing the showers in August of last year.

And that is when things got even worse.

Because the showers always seemed to happen when you weren't feeling well,
i got rushed through the shower;
you did things the way i didn't like, which was only partway,
and when i would tell you, you would get angry and irritated with me for telling you.
I soon was able to speak up and tell you i would do everything myself in the shower, except the places i can't get to at all myself sitting on the shower bench, or standing up.

Then Shower Days  became a real cat and mouse game between us, where you would often say you weren't feeling up to giving me a shower----or you'd look over at me and say "You don't feel up to doing the shower today, do you? I can tell, you look tired. No worries, we'll do it tomorrow". It was both our fault, because some days i wasn't feeling up to a shower, and some days you weren't feeling up to giving me one. So....my showers got put off all the time, till i would stink so much, till my hair was dripping grease and in strings, and i was itching....and then you would give me a shower. I would actually pretend and say i wasn't feeling well enough to get in the shower, to appease you, because i knew you were in a mood and/or not feeling well.

I was afraid of your temper, and bad moods. I was extremely afraid of you. Because. You could, and did say very cutting and insensitive things to me when you got in those moods. Your eyes would bulge. And your voice would boom sarcastically.

In August of last year was our first huge blow-up, where i finally tried to talk to you to tell you how i was feeling, and you got so angry and began to say awful things to me about my Autism, that i was using it as a shield, and that i was going to make you forever pay for what all those caregivers did to me. Each time i would speak, you would tone police me, accuse me of yelling, tell me to stop yelling, tell me i was being snippy and snotty, and tell me "OH REALLY?" to everything i was saying, with your eyes bulging out and your eyebrows up in round angry half-circled arcs above your eyes.................................................................................................and i finally made you leave because i was on sensory overload............................................my whole head spinning.
You came back after my mom talked to you, only because you suddenly got scared and didn't want to leave me hungry, without a fresh hot meal. We both cried, hugged, and then talked things out....................and things were great from then up until the last of October, the start of holiday season, when you got in more bad moods......more on that later.......

And then there were other things.
When you were in a bad mood,
I began to get yelled over whenever we would discuss current events and political things.
You could no longer stay past a certain hour, or after dark.
You told me you would not come if it was raining, because you were afraid to drive in the rain----
which made me afraid to have it rain.
Slurpees were out because you hated going to any of the 7-11's here because of all the field workers and high school kids being there.
My rainbow sherbet ice cream was a no-no too, because you hated Orcutt------all Orcutteers were snobs to you------and didn't want to drive that far.....7 miles.....to get my favorite ice cream that i can't get here in Santa Maria.

At Thanksgiving, you promised me a nice homecooked meal. That didn't happen. I had spaghetti for Thanksgiving. 
No pumpkin pie either. But i did have spaghetti.
At Christmas, same thing happened as Thanksgiving..................plus you promised me we would go on a tour to see the Christmas lights. That also never happened.
I wanted to go buy some Christmas candy. Specifically candy canes. You told me no on that too. You said the stores weren't stocking their candy that well this year, that you weren't seeing any candy canes.
You promised to bake me Christmas brownies....that never happened.
Several times you have promised to take me on walks in my transport chair.
That only happened once, right after i got the chair, in July of 2014.
That chair has sat in my garage collecting lots and lots of dust ever since then.
You promised several times to give me a manicure and a pedicure. That never happened.
You promised several times you were going to get the new rear tires on your car so we could start going to Pismo Beach and places like that.
That never happened.
You also promised to take me to the new movie theater in the mall. And to see the new city library. That never happened.
You kept me away from the freeway too, which you know i also love.
You would not even take me to Waller Park where i could at least sit by the pond to watch and take pictures of the ducks and geese.

In December, you took me to see my doctor. It was pouring rain, and so all the way there and back, you screamed,at, flipped off, and cussed every single driver off, even calling one lady in a black pickup truck a fuckin' r*****." You used the R word and the N words alot, even though you knew those words offend me.

And then in January, you got angry with me because you wanted me to go to a different branch of my bank than the one i like, and when we got there, it was too far for me to walk to the entrance, and then inside it was a long walk to the teller line. 
I went in anyway, with you walking way ahead of me, and not even helping me to climb the tall curb that i had to climb..... but even when i was buckled over in pain after standing in line for fifteen minutes, you still got angry, accusing me of not trying hard enough.
So, we went to my bank.....but you were sullen all the way down, and played your radio loudly. 

We had another huge blowout that afternoon after we got back to my house, and then you got nice again for the next two months.

But my showers still got put off for weeks at a time.
And now, each time i had a doctor's appointment, you started asking that i reschedule every single one.
I had doctor's appointments in February, March, and May.....but you made me reschedule every single one of those because they were for the same week as my bank payday, and you didn't want to make two trips to that area twice in one week.....so i cancelled those appointments to keep you from taking it out on me.
I needed to see my doctor. Missing those appointments even caused my med prescriptions to be messed up. 
You did get me authorized for refills though.
And then i had the leg tumor injury in February. You were nice during that time.
You got nice when my computer chair collapsed and caused me to fall.....you did take me to get a new one....and you arranged for it to get put together for me.
You promised to cook a nice homecooked meal for me after i fell too, remember that? But that never happened.
You also promised to take me to get my phone upgraded, and to get an iPad too. That never happened.
And then, even though my leg tumor got a sore on it, you still let me go weeks without a shower......or cleaning my leg.
it is still draining as of now.
If treated properly these sores do heal.
But it is June 23rd now, and yes, it is still draining.

Since May of this year, things became so unbearable between us, that i couldn't take it anymore.
I finally had to resort to calling in two of my Autistic advocate friends and my social worker.

Because time and again i have talked to you,
explained to you,
pleaded with you,
and sent you post after post, blog after blog, meme after meme.....
to try to get you to once and for all, understand my plight and my Autism.
I had to.....because i still was not getting through to you, and your moods were getting so bad now.....that you were starting to even YELL at me alot. Yes.
Actually yell at me.
And getting on your cell phone to surf the web,
and tuning me out when i would try to talk and converse with you.
Tuning me out completely.
When you last shopped for me, my personal bathing wipes went in a totally new spot......
on the bottom shelf of my bedroom bookcase, instead of on top, like they always go.

Yes, you have recently started getting me my ice cream and Slurpees,
but you only went a few times for me, twice for the ice cream and 4 times for the Slurpees. 

I began to feel like i was a little kid being told no by their mommy and daddy.....
i felt like my house was not my own anymore.....i
and i was feeling more and more like i didn't matter as much to you anymore.

So i had to finally take a stand. And now i got punished for that too. By you walking out on me.
Congratulations though, Melissa, at least this last caregiver lasted 15 months and two weeks with you.......
...........yay for that!!

And i got lucky again. I was able to once again post my appeal ads, and got a new caregiver the same day that you walked out on me.

But if i hadn't of been able to get that new caregiver, then what???? I would have been without my pain meds two days after, and i would have had to order food, and pay a minimum order fee, which is expensive, and not been able to get my bills paid.

When caregivers walk out like this....they do not know what damage they are causing, physically, mentally, emotionally, and financially...... and the very real jeopardy they could be placing a disabled person in too.

To all caregivers, please think about why you want to be a caregiver. if it is to wield power and fear over those who are vulnerable...choose another field of work. And laws need to be passed that hold caregivers to a high standard of service. Only those who actually love people and actually want to help people, should be a caregiver.

I wish i didn't have to need caregivers. This has been a three year hell since i have needed to rely on caregivers. It should not have to be like this, for any of us.

Friday, June 19, 2015

Notice To Those Who Wanna Hate

I make no apologies for who i am.
These blogs are my life stories,
my life experiences,
my vents,
my rants.
They are me.
If you do not accept me and wish to attack me, 
i will not just delete your comments
you will be blocked, and reported.
#ActuallyAutistic and f**king proud of it!!
Meet my Bodyguard :D

My Last Caregiver Walked Out & Quit Me—And The Sun Is Shining Again

Yes, i have finally had to part ways with the caregiver who i had for the past 15 months. I had to. The relationship was growing darker and darker, and her dark anger was dragging me down with her, and that deep anger….literally, to where i felt i was going to die if i didn’t speak up soon. I was growing to feel more and more cut off, walled off, isolated, depressed, and like all i could see ahead of me was a long dark tunnel with NO light at all at the end.
What actually ended up happening was that she quit. Because things got so bad, i had to call my social worker and have two advocate friends talk to both her and my social worker. She didn’t like this, so she picked up her purse and walked out the door, leaving me with no way to get my pain meds at the pharmacy, and no way to get food for dinner that night. This happened on Tuesday afternoon, June 16th, 2015.
Of course this threw me into a huge panic. But no worries though, because i had already unfriended and blocked C on Facebook, and had posted a new appeal early that morning for a new caregiver, in two of the local Santa Maria groups here on FB.
I got a huge response right away, about 30 responses in all, and even made a couple of new friends from this appeal. I called one lady who edned up coming right over to help me after C walked out. I had talked to her by phone that morning too, and when she came, we talked even more, and she agreed to go get my dinner and pick up my pain meds. I ended up hiring her, because i felt very strong good vibes with her.
Her name is Maria, and she is my new caregiver now.
I had fervently hoped and prayed that i could make it work between C and i,
that our working relationship and friendship would last longer than it did,
that i would finally get through to her my need to have my shopping, housecleaning, showers, skin care, massages, etc. done,
and to have outings at least twice a week, so i could get out of my house once in awhile.
And to to have the compassion, validation and reassurance i need.
She didn’t seem to get that.
Things only got worse…and the reasons i kept her, was because of fear of being without care again, because C used to work alot in medical offices, and knew all about lymphedema, medications, etc. Because she knew how to talk to doctors and nursing staff on my behalf. She got them to get me a new transport chair for outings, and a Disabled Placard for parking. Because of her good side, which i did like.
We were supposed to get out on lots of walks, and she was supposed to keep up the healing massages on my legs and leg tumor. She was supposed to help me to walk more too. She kept slacking off in all of these areas.
The weird thing was that when she first came on board with me in March 2014, March 4, 2014, to be exact, she drew me in with her nice charming side, her beautiful warm wide-set brown eyes, her cute fun snarky personality, and her long straight shiny dark reddish-brown hair. She would come in blue jeans and cute tops. She always smelled nice. I felt an instant bond with her at first.
When she was nice, her brown eyes would sparkle, with an ever-present easy sweet smile, and she would giggle and joke alot. When she was nice, she showed me so much in the way of kindness and compassion, and she would promise to do so many things for me.
I truly believed she cared about me, that she was different than all of my other caregivers before her, and that she would actually carry through with her word and do all of those things that she would promise that she would do for me.
I grew to like her right away, and then love her, just like she was a sister to me.
This seems to happen with all of my caregivers though….when they first come alongside to help me, we always seem to bond right away. And then things crash and become a trainwreck.
On C’s and my good days, we would laugh, giggle, and banter back and forth, teasing each other, joking around, and she seemed to know and understand and get me at those times.
But then the dark, angry bad moods would come like a black veil shutting out the sun, where she would just sit and belittle and criticise me, and when i would try to speak, she would talk and shout right over me, and talk over me, in a way that made me feel literally belittled, muzzled, and small.
We were friends on facebook too…and she would routinely criticise me for what i would post if she didn’t like it.
She wanted me to stop being real, being me on my very own wall…..she wanted me to only post the happy stuff, and not the true way i felt. If i posted certain political things that she didn’t agree with, i would hear about that too.
She would talk over the TV when i was trying to hear my 5:00 PM news, and hear the weather forecast. I love channel 6’s news, because i love the news personalities on that channel, as well as their meteorologist/weather person. I learn alot from him about weather patterns, microclimates, clouds, jet streams, the earth’s angel and how it makes days longer in summer, and shorter in winter….and so on. But she would even take that joy away from me. She would say awful tings about the channel 6 news staff, saying they were all snobs…..when i know they are nice friendly people. When i would try to show her the pretty sunsets and pretty scenic pictures, she would dismiss me, saying “Oh, i don’t notice those kinds of things”—- as if to imply to me these things that were important to me were trivial and silly. I felt my enthusiasm that i would want so much to share with her about shiny hair, and beautiful pictures, and the moon, and the beautiful sunsets, etc. crushed so many times by her. I would get so excited about a beautiful sunset, or beautiful picture of the Northern Lights, and she would shut me down like a wet blanket and ruin my excitement.
She didn’t treat me like this though, when she was in her good moods. When she was in good mood mode, i seemed to really matter to her!
I finally had to start talking to some of my FB friends in the Autistic community. Because her moods were growing progressively worse. And worse. And worse.
And then, finally she walked out on me——–
because i excercised my rights to call my social worker to get another caregiver.
Because i needed to get the heck out of the long black tunnel.
Because.
That long black tunnel C had me in was sapping all of my joy, and strength. I couldn’t breathe anymore. I felt it affecting me deep in my soul…..soul and spirit crushed yet again.
Below are is a post i wrote yesterday evening, and two comments i wrote on the thread of the post below. I am going to add to them to make them more clearer.
—————————————————————————————————————
Post written Thursday, June 18, 2015, on Autistic Pride day 2015
“I had a very nice afternoon today!! My psych tech appointment got cancelled b/c he called in sick today, but his receptionist said she would request that he give me two more refills of my anxiety medication so i will make it till i see him at the new time, in August.
Me and my new caregiver got out anyway this afternoon, and we were gone all afternoon.
She went into Wells Fargo to pay my chair payment for me,
and then i finally, finally, finally got to go see my longtime family friend, Sue’s new pre-built home that she moved to that is in a nice senior park here in town, when my new caregiver took me there to get my box from Amazon that came there.
Sue’s new home is impeccably gorgeous. She has beautiful tile flooring throughout her house, that looks like dark wood, and her kitchen has white cabinets, white subway tile on the backsplash, beautiful granite countertops, and brand new stainless steel appliances.
Sue took us on a nice tour of her three bedroom three bath home, and then me and my new caregiver enjoyed a nice long visit with Sue, as we sat at Sue’s dining room table overlooking her beautifully landscaped backyard.
The afternoon sun was shining nice and pleasantly through her French doors, into her dining room.
It felt so good to see the sunlight, and all of her pretty flowers, and landscaping.
I felt such a beautiful a peace while there—-a peace that i have not felt in so long.
(A vent.) Now that my ex caregiver is gone, i can open up fully and tell you all what has been going on with me for the past 15 months, as when C was my PCA, she was also a FB friend, and would watch very closely what i posted on my wall. She would routinely police and scold and lecture me for things i would post.
I was very afraid and intimidated by C. Yes, she had her good side, indeed, it was a very nice and kind side, when i loved her, and at those times, we would laugh, and giggle, and it was always at those times, she would promise me she would take me places and do things for me……. but she also had a scary temper and sudden mood swings, where she would get snotty with me too, and that was when she would refuse to do things i wanted her to do.
She would go weeks without cleaning my house. And weeks without giving me my shower.
And when C would always go to Sue’s, to pick up my packages that i would order from Amazon, and my monthly love packages from my mom…..she never took me with her. Even though i would beg her to take me, so that i could see Sue’s new home.
C and i rarely did things like what i got to do today, at all. And when C did take me in her car, her road rage would scare me, as she would routinely yell, cuss at, and flip other drivers off.
When C was my caregiver, i was mostly housebound, with C telling me i would not fit in the seats at the new movie theater, or be able to get down the steps there, and she would also say negative things about other places i would say i wanted to go that would deter me from wanting to go, or to even get out of my house anymore.
Because.
Whenever i would ask to go for the walks again, C would tell me “No, i don’t feel like it;” and….she would not take me. C would on a regular basis make promises that she was going to take me to the park, or the movies, or just walk through the mall…..or bake me nice things…..and she never ever ever kept her word. She even promised to give me a nice manicure and pedicure, and never did that for me either.
She basically was here sitting alot, and complaining about my music and what i watched on TV, and would be so sullen, making me afraid to even speak up for myself.
She often said very hurtful things, and would often look at me with a piercing look that would make me want to sink into my chair and hide.
She would only clean my house and give me my showers only when things would get so bad, they needed to be done. She would often say she did these things, and i just didn’t know it. And when i would go 14 days without a shower, she’d say “But you had one two days ago!”
Really? Would my hair be in strings, greasy, and matted to my head if i had had a shower two days ago???
She says that these are all false accusations. I have the pictures of my hair matted to my face right here on Facebook, and the sad looks and the shutdowns i was in because of her. I have my posts as documentation too.
To be honest, her temper would make me have bad flashbacks to my father. Because her temper is just like his was. He too did not let me have my voice.
When i say i am scared of someone, i don’t lie. I have had very bad luck with all of my past caregivers that i have had through IHSS.
As for the transport chair she helped convince my doctor to order for me so we could get out on walks around the neighborhood and go to the mall and library……. C only got me out once in that transport chair to take a walk in the nice neighborhood that is behind my house, and that was back in July of 2014 when i first got the transport chair.
That poor chair has sat, ever since then, collecting dust and cobwebs, in my garage.
And none of it has been my fault. it is because they don’t adequately pay and train or screen the caregivers who get placed on the IHSS registry. It is because the vast majority of people who become caregivers, seem to do so because it’s an easy way to exploit and take advantage of those who are the most vulnerable, our elderly and Disabled.
And C told me she was not like all of my other past caregivers…..that she was going to be different. She said she would prove to me she would be different. And….in my first few months with her, she was cool. She did cook spaghetti for me four times, with garden salad, and garlic bread, enchiladas three times, Sloppy Joes four times, and would also make me Spanish rice and bean and cheese burritos too on most weekends.
But when her bad moods started, my weekend burritos and Spanish rice began to taste bland and dry, and then, more and more, she started getting in more and more of her bad moods.
The day she quit, i found that she had put my bath wipes way down on the bottom shelf of my bookcase where i would have to reach and stoop low to get them…..and she knew better than to do things like this. She also placed the bedroom trash bag where i could trip over it and fall. When i had her put mail in what i call my bag for the shredder that i am still hoping to get someday….she would not bother to put the mail in the bag…..it would be thrown on top. When i finally went out to my garage, i could barely get to the back door to my back yard, because she had my boxes from my mom and Amazon right there in the way, making it had to get the door open.
Things finally got so bad that i had to take a stand. We began to have more talks, with me trying to reach her to explain, once and for all, my needs, and what i like and don’t like and to stop policing me, and the next door neighbors who she was also policing and bullying. We both agreed to no longer be Facebook friends. And then when i could see the black tunnel getting even blacker…… getting even worse….i finally posted ads in the two Santa Maria groups on FB.
And the day C walked out on me, i found Maria.
I think Maria will be with me for a long time. I like Maria.
Two comments i made to this post:
“I am going to have my new caregiver, Maria, take me to get my iPhone upgraded, as i am eligible for the new iPhone 6 through Verizon. She has a Samsung Galaxy S4 also through Verizon and has a friend who works at our local Verizon store. I will have Maria teach me how to text. I have wanted to learn how to text for awhile now.”
“Maria, my new caregiver, and her husband are both very kind hearted people who are very loving and spiritual, i can tell they are genuinely Godly people, and they are both okay with me being Bi-sexual, and liberal too. I don’t see in them at all, the hatred, bitterness and anger and rage that i witnessed in C. I feel that i am, and will be, safe with Maria. Plus, she likes my music, and likes The Weather Channel, “Fixer Upper” on HGTV, and the same movies that i like.
C was a very contentious person, and seemed to thrive on opposing me alot, especially when she in Bad Mood C mode. But i feel safe with Maria. I believe Maria when she says she is going to get me out of this house, cook for me, and bake for me.
Maria even took me on the freeway through town today, and that made me happy too, as i have always loved freeways and highways. C kept me away from the freeways and roads, kept me away from the ocean, and kept me from seeing all of he new developments around town…..even the new multiplex movie theater that we have at the mall.
C was a very negative hateful person when she wanted to be, and it was so very bad when she got like that. She would even pick on my neighbors next door to me, say mean things about them and bully them into where they could and could not park, and put their trash containers on trash day. That woman had a very scary side to her.
But now that C has left, i feel like the sun is shining again in my life. I felt an awful dark negative hate and anger around C. I felt so very oppressed. But now i see Hope and Light again, if that makes sense.
I am free to enjoy my music and TV again, and my home is mine again.

Wednesday, June 3, 2015

Another About Me....Please Understand, Once And For All!!

First of all, i do not want to have to keep on apologizing for the way i am anymore.
This is me, and this is who i will be till the day i die. 
I am not neurotypical; nor will i ever be; i am Autistic. 
I was born this way, and due to lack of supports growing up, 
i have become very set in my ways at the age 55 years.
I have spent my entire lifetime trying my best to fit in, to get help
from one agency after another, after another, after another
so that i could lead a decent life.
But i fell through the cracks due to misconceptions, stigma, and 
having functioning labels slapped on me
and wrong diagnoses
and being misjudged and misunderstood.
Along the way, i have learned alot of my own unique coping mechanisms that work for me.
But along the way, people have tried to fix and cure me
and it never works because it is done without understanding
by non-Autistic people who don't get and don't want to get Autism
And because i happened to grow up in a family where i had little support and acceptance,
and lots and lots of harsh criticism, taunts, teasing, and being made fun of
i grew up always being afraid of harsh blunt people
I am not spoiled. I never was spoiled.
I am not physically lazy, nor am i intellectually lazy.
Neither am i mean and selfish.
As an Autistic, i see things differently. I hear things more loudly.
I am more sensitive than a normal person is, to
bright light,
textures,
smells,
tones of voice,
looks people gve me,
body language 
and certain types of loud noises.
I don't do people things well
I may be 55, but my mind, in some ways, is still childlike.
I am strong in some ways, very timid in other ways
When i say i cannot do something, i mean what i say.
When i say i do not know how to ignore things that upset and trigger me, i mean what i say!
I lack the ability to ignore and get over things
It take me time to get over things that happen that have upset me.
And i have to talk and write about it to process through it.
It's the only way i know how to cope.
I know my body and mind and thoughts inside and out.
No one else does.
I know what i can and cannot handle.
And i know in my heart of hearts
that i am a deeply compassionate and kind-hearted person,
and that i would give anyone the shirt off of my back.
I do not lie, cheat or steal.
Nor do i ever set out to be mean, ever!
I have always been very sensitive to sudden and unexplained changes.
If people rush me, i will shut down and melt down.
I have always, always, been unable to take criticism
that is meted out to me in a manner that is harsh and blunt,
because i take that as an attack on my very personhood.
I take it as the person is belittling me and turning against me.
There are ways to say things that can be said in a kind way.
But if i perceive that anyone is becoming impatient with me, and angry with me,
i will get scared of that person, and i start to shut down like a frightened rabbit.
If i feel i am being talked over, and not heard, i will become afraid and intimidated.
And i will withdraw.
Please understand, i grew up being told i was an "incapable" person
this was drilled into me so much i believed it.
Please understand, there is the power of life and death in the human tongue.
What you say can either lift a person up, or break them to their very core
to where unrepairable damage can be done to that person
Sadly, my physical health has gone so much downhill
that i have had to give up much of my independence
and am today, at the mercy of caregivers to help me with a vast many of my needs now
this has sadly left me open and vulnerable to alot of abuse
i can no longer drive and go places like i used to
that makes me very depressed...
and i often suffer from terrible loneliness when my caregiver is not here
i also have a large lymphedema tumor on the inside of my left thigh which really hampers my mobility
along with the lymphedema i have on both of my legs, making them swollen as it is
Please understand and have patience with me, 
because this is so hard for me to live like this day in and day out, and not be able to
move to a quiet neighborhood away from the bullies that i still have here who still torment me
and i am not able to get the surgery i need to remove that leg tumor
i am limited, and i feel very trapped, like i am in jail
it is hard for me some days to put on a happy smile and be okay and
always easy to get along with.
Please......i beg you......please, once and for all.....understand and accept me as i am,
please validate my interests, likes, dislikes, and who i am, and my feelings too
i am Liberal, Pro-Choice, Pro-LGBTQ, and i am zero tolerance on racism, and on
anyone who abuses others, both children and adults,
either sexually, physically, mentally, emotionally, or financially
I was not put on this earth to add to anyone's suffering.
I'm still a human being who has feelings that get so hurt when
people i love are angry at me and i think they disapprove of me.
Please read this with an open and compassionate heart, and please understand.
Please don't shut me down when i want and need to talk and vent and talk things out.
It's the only way i can process things so i can get through things.
And please remember, i am doing the best that i know how to do.
I am Autistic, not a monster or a criminal.
Thank you. I love you, everyone.