Saturday, July 18, 2015

Connie~~To New Beginnings

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

Friday, July 17, 2015

Update, Clarifications, & A Second Chance

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

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

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

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

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

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

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

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

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


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

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

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

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

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

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

Thursday, July 9, 2015

My Meltdowns

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

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

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

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

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

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

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

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

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

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

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

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

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

Saturday, July 4, 2015

More About My Last Caregiver…And To My Future Caregivers

**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.