Tag Archives: Autistic Acceptance

How I felt In 2013, How I Feel Now About My Family

This post is derived from a post from November 2013 that came up in my Facebook memories this morning about the biological family I was borne into.

Because the holiday season always brings old family memories to the surface. Whether good or bad.

Some of us are blessed to have supportive accepting families.

Some of us…are not..so we create chosen families where we do fit in and belong. I now have a wonderful chosen family made up of my two current caregivers, and a handful of close Facebook friends.

And it is even worse when you were born fully neurodivergent instead of neurotypical. And you grow up feeling like you are an outsider, like you are never good enough, and you don’t fit in or belong anywhere. Because you’re thought of as too weird and too different. And yes, even the dreaded R word.

Othered. Less-than. It. Retarded. Please know why that word is a bad word and don’t use it anymore, even as slang, because it is a Disability slur. It is every bit as bad as the N word is to Black People.

I do want to say this: Part of my family do accept and support me—my mom, and two of my sisters: my second eldest one who lives with my mom, and my eldest one who lives in Arizona.

The one who live in AZ, I was very, very close to as a child, but then when I entered high school, she and I grew apart, and did not become close again until 1994 when, at the encouragement of my then psychologist I was seeing at the time, I wrote a long open letter to my whole family to let them know how much they have hurt me, and my eldest sister was one of the only ones who took my words to heart, and she was able to call me and fully acknowledge and deeply apologize for her part in all of my hurts from my time of growing up in the Fields Family.

The following is a post I wrote from November 2013 that came up in my Facebook memories this morning. It was written on Thanksgiving Day 2013, or rather what I now refer to as Indigenous People’s Day Of Mourning. Because even though I still celebrate it to give thanks for my many blessings, and to eat good food, and hang out with my chosen family, I now know the true, and sadly, very ugly history behind this holiday, and you should Google it too, just Google #WeLiveOnStolenLand, Indigenous Day Of Mourning, and what you need to know about what really happened on Thanksgiving Day.

But that is for another day for me to blog about. And I will.

My post, re-edited, from November 2013:

I am still seriously sorry I was born into my particular biological family….and wish I could just divorce most of them.

Today, trying to talk to my mom, she reaffirmed just how much my middle sister who has me blocked on Facebook still holds me responsible for her suffering all of her life. This sister thinks that I “act” the way I do on purpose, and seems to feel as if I am a burden to be ridiculed, shamed, shunned and ignored by my family.

They just seem to want me to go away silently.

I am not going to do that.

I still to this DAY, wish to God I could be adopted by a nice family who will help me by being here for me and helping me to finally get the help I need so I can work to salvage what is left of my health, life, and joy.

My middle sister never has liked me. But it’s totally on her. I did nothing to hurt her, except to be born the completely neurodivergent goofy silly Autistic me I have always been. Growing up, I was merely reacting always to the way she always beat me down with her words and her intolerance of me, all of my life.

She would never let me touch her hair, which was long reddish-copper-auburn and silky shiny. Shiny hair has always fascinated me to a level of excitement that only an Autistic person would understand. Shiny hair has always been one of my main go-to Autistic stims, and she hated me for it. Hated me for all of my goofyness. Hated me because of how I drew all the time, and how I was always drawing pictures of my imaginary friends. Imaginary friends I have always turned to to cope with a fully ableistic world that still to this day does not get autistic people.

All of my life I have felt I was the cause of my family’s stomach aches, headaches, and anything negative that happened to them. I was always told that too. My mother would often refer to me as her penance. Yes, there were often times when my own mom would turn against me. Which only added to my hurt and trauma.

I always felt like I had to apologize for just being me. My mom, whom I love dearly, and who, for the most part, IS in my corner, even was always very embarrassed by me. Because I have always had a loud voice, and have always been a very forward and outspoken person. Like, no filter outspoken.

My father? Was a monster who I both feared and hated, because he never accepted me. I was beaten, thrown in my room, screamed at, roared at, even for my likes, quirks, and opinions because they always differed from his narrow conservative intolerant ones.

Yes, he put a roof over our heads, fed and clothed us. But if he didn’t like you, he came down HARD on you with hellfire and brimstone and death. That is how I always felt around my father. Like I was always <thisclose> to death itself.

I was never allowed to talk at the dinner table, other than to say “Please pass the salt, please pass the potatoes” type of thing. I would get sent to my room, and / or spanked. Worse yet, he would pull hard on my ears, or my hair really hard to get me to mind him. He would also hit me on my face and head. If I didn’t do as he said, he would beat me and throw me in my room. I couldn’t even joke with him. Or show him a drawing at the dinner table. That would get me beaten and thrown into my bedroom with the door locked—from the outside.

He hated it when I would walk in front of the TV when his football and baseball games were on, even though the bathroom was in the path of the family TV.

In sixth grade, through the end of my Freshman year in high school, I went through a long period of time where I was quieter, and more afraid to talk and be myself because I was tired of being chastised and told how weird and different I was.

This was from 6th through 9th grade, then in 10th grade, I began running away and having explosive temper spells, and meltdowns. I would regularly break chairs and kick holes in doors and walls…..because I was never being heard and listened to.

It was unbearable frustration for me to be in a family with so many hierarchies, so many unwritten rules, and do’s and don’ts, that it caused a great volcano of anger in me. Anger that stemmed from all of the hurt and rejection of me as the person I was.

I ran away four times that year, because I longed to find a family who would see me as a human being and take me in. I felt in a new family, I would finally be loved, finally be accepted and that I would finally be popular at school too.

Also when I was a sophomore, right when school began for all of us kids, my little brother suddenly without explanation or reason, became a literal angry demon towards me and began glaring at me every night at the dinner table.

He would growl diabolically at me, and say things like “Huuuumphaaaaaa!” and call me names like “Pig-aaat!” And say, over and over again, that I was not a part of my own family.

His whole face would contort into such hate it frightened me to pieces. It got so bad, I began to eat my dinner every night in my room. I had to literally beg my mom to talk to him to make him stop this. And he wouldn’t. He was eleven. I was a Sophomore in high school.

I couldn’t even watch TV with the family at night anymore because of how he began treating me. I had to miss shows I loved, like the new “One Day At A Time” show that came out that year on CBS, that had Mackenzie Phillips and Valerie Bertinelli who starred as two teenagers of a single mom who lived in Indianapolis, Indiana.

At Christmas that year, I did participate with the family, but my eldest sister, the one who now lives in AZ, who I was NOT getting along with at the time, placed a huge box right in front of me, cutting me totally off from the others when we were all talking at our dinner table after dinner and the opening of our presents.

Deeply hurt, I went into my room, in huge heartbroken tears, and my middle sister who has mostly blamed me for all of her suffering, the one who today has me blocked on her Facebook, actually saw my eldest sister do this, noticed how I immediately got up from the table to go in my bedroom, and she came into my bedroom along with my mom, actually FULL of compassion for me, and promised me from then on, she was going to be kinder to me, and not do things to make me feel left out anymore.

I got along very well with my middle sister from then on, until 1991, when she moved to Idaho. From then on, she has slowly turned against me again. No, it didn’t happen all at once, but as I kept calling her to complain about the bullies next door, and across the street, it seemed to sour her on all things me again.

The majority of my Sophomore year of high school, I continued to have to spend most of my time in my bedroom after school, and still could not even watch TV with the family because of my little brother and how mean he got towards me, with the awful looks and awful remarks he would make.

To this day, I am fully estranged from him. Even though he did realize how mean he was being the summer after my Soph year, and he stopped for awhile, when he got married to his second wife in 1989, he began to shun me, and began telling my mom, his new wife and his two kids even, that he was afraid of me because of how I began to pick on him after he got mean to me. He says that I was mean to him.

It was my reaction to how he was suddenly treating me, because I literally couldn’t handle it. It was too much for me to bear being in the same room as him when he was in demon mode.

Remember, he was eleven when this happened, old enough, I felt, to know right from wrong, and he chose to literally cause me to have to self isolate for one whole year of high school and then again, the first semester of my Senior year, when he again went into demon mode on me. When I was a senior, he already knew what it did to me when he would go demon on me. He already knew how it literally sent me into a full mental tailspin. He was thirteen then, and he knew.

This time it wasn’t just me, but he also went full-on demon on my sweet angel of a friend Kathy who would have never hurt a fly,….and treated her mean too, when she came to stay with me to go to a family reunion with us.

In 1999 when I drove all by myself to visit my family who most of them had already moved to Idaho, my brother avoided me completely.

In 2005 when my mom was here visiting me from Idaho (she moved there too in 1996), she was talking to him on my kitchen phone one afternoon, and him just hearing me in the background, yes, I was having a meltdown that afternoon because of a thing my mom had done to my bedroom drawer–she had gone in and rearranged it without my consent, and him hearing me upset, he literally told my mom that if I moved to Idaho, he would have to stop having the family barbecues. Because, as he told my mom that afternoon, my being there would ruin the family BBQ’s for him. In other words, even in 2005, he still did not consider me to be a part of my own family.

The ONLY things I am guilty of with my baby brother, is becoming hypervigilant with him after he suddenly turned on me my Soph year of high school–meaning, yes, I did begin picking on him to make sure he would not be mean to me ever again, and when he would get mean behind my mom’s back then lie to my mom about it–well, that made it all the worse for me. Because my mom would believe him.

And, also, when we were kids, I loved my baby brother. He was my playmate, my best childhood friend. And yes, when I began going through puberty, I did start pushing him away…..because, well, puberty was happening, and I wanted to be like all the OLDER kids in my family, not him anymore. If only I could go back and undo me pushing my baby brother away, when all he wanted to do was play with his kid sister. Because he had been so used to me playing with him all the time….when we both were children.

So yes, I am guilty, of pushing him away, when he wanted to play, and then of picking on him after his demon mode began manifesting.

And to my baby brother, I am so, so sorry for pushing you away, when you still thought of me as your kid sister. Can you ever forgive me for my cruelty, for shutting you out of my life the way I did?

My sister, the one who has me blocked on her Facebook? Has reverted back to hating and blaming me for all of her suffering. To my middle sister, whatever it is I did to cause you so much agony…I still don’t know or understand to this day, but If I ever did do or say anything to hurt you in our times together as a family, I am also sorry and ask for your forgiveness.

I’m not writing this, nor writing my life story, to maliciously bad-mouth my family. It was NEVER my purpose in going online first on Tricia Kenney’s BlogTalk Radio Embrace Autism Show, and then in blogs, and more radio shows and YouTube videos. My reasons for telling my particular life story, have always been, and are, purely to educate you who read and listen, on how it is to be Autistic, and also so my bio family finally gets why I was the way I was, and will finally stop hating and shunning me for it!

I didn’t find out I’m Autistic until a week before I turned 39 years old, in May of 1999. Back then, I got labeled as having Asperger’s, and now I hate that term and reject it as the one who invented the term, Hans Asperger, was a Nazi who hated Disabled people.

I am also non-binary, and queer. I have always felt sexual attraction to all genders, not just cis hetero male.

Today, I also have end stage stage five kidney disease, and have been on in center hemo dialysis for three and a half years now.

As I have grown, I have had many more traumatic experiences with past caregivers, and past friends, who either could no longer handle being friends with me or just were total douchebags. Many of these experiences were very scary, and they have also contributed to the C-PTSD trauma that I walk with today. I have deep trust and abandonment issues today and am ultra sensitive and hypervigilant because of how so many still don’t get Autism or Autistic people.

So, this is why I write. Because my pain, this pain I carry, is so deep, pervasive, and never-ending.

I am not a monster. I am Autistic. I was born Autistic. I am going to die Autistic. There is no cure or fix for my Autism…and no one should try to cure and fix us.

Every holiday season I mourn for what I could have had with my biological family all those years and seasons—for what I still could have—if only we could sit down and have the hard conversations that it’s going to take, and not walk away, but face it all, once and for all, what was done, what was said, what we all felt, just get it out in the open.

I am willing. I don’t know how much time I have left on Mother Earth, and I want to make the effort to try to heal what happened between me and my middle sister and the two brothers I have left on Mother Earth. I now that my eldest brother who is now in Heaven now knows, because I know he comes to visit me now that he is on the other side. I think he has become one of my Guardian Angels.

I feel my late brother Ed’s presence quite often ever since his passing in May 2018, especially when I am in distress, when I’m sad, hurting and depressed and I just feel like I want to give up on everything.

It is because of him, my mom, my two sisters, my two caregivers, my one caregiver’s son, and the friends I have made through Facebook’s Autistic / Disability Community, that I have not yet given up.

Thank you, and Happy Holidays.

A Something—A Huge Something That Needs To Be Said

Putting this here, because, well, Facebook’s new platform now has this super uber angry-making and frustrating to NO end habit of eating posts we write if they are long posts.

I need to say a huge something. A HUGE something. Because you all need to know this.

And yeah, this does keep me awake at night. Lots of nights, not just because of my own situation, but the situation of many of my friends, and all who are marginalized.

Our economy is sadly designed so that those who are upper middle class, wealthy and filthy rich have it easy peasy, and can afford everything that comes their way, including staple expenses we all pay for such as groceries, medicines, vitamins, utilities, internet, healthcare, etc., but the rest of us, who are middle class, low income, poor, disabled, elderly, etc., are now being literally gouged—-each and every single month. Gouged to where many are homeless or incarcerated. Gouged to where many turn to self medication, drugs, and crime to cope and survive.

Our cruel pull-yourself-up-by-your-bootstraps Capitalist system is designed to literally leave out those who are Black, Brown, Indigenous, Disabled, Elderly, LGBTQIA+, Immigrant, and etc. Add Americanized Trumpified Evangelical Christianity to this mix, and yeah….it makes for a toxic systemic living hell that literally leaves huge groups of us behind. Woefully and literally behind.

The lower income you are, the harder it gets just to stay afloat each month. Many of us turn to credit cards to pay for some of our monthly expenses because what we get in income each month is not enough to actually cover all of our monthly expenses.

And with the pandemic, prices at the grocery stores and drugstores have risen sharply. Prices all around have risen sharply. The wealthy and rich can afford these higher prices no problem, but the rest of us…this is eating us alive. It’s eating ME alive.

If you are disabled and cannot work—like me—your Social Security and/or SSI is your only source of income.

Many of us also do not have a supportive family. I do have my mom and two of my sisters, plus my two caregivers who help me all they can, but they too are struggling. And the rest of my family ignore me. They. Totally. Ignore. Me. And see me as a bad person because of my Autism, my meltdowns and my struggles.

Each month I have had to rely on my credit cards to augment what I get from Social Security. They pay for my skin creams that I need, my vitamins that I take to still maintain a semblance of (somewhat) healthy, plus books, and recreational outings and stuff I also need just for my sanity, because let’s face it, we ALL need to have outlets to stem the day to day mundane in our lives—and we need those things whether we are rich or poor, sorry, but that’s the truth. Human beings thrive if we have lives that can be actually fun too. Not just us existing.

And to add to my mix, I now have end stage stage five kidney disease, and have been on dialysis fort three years now. I am also Autistic, by the way, and have lifelong Complex-PTSD trauma from just how most have misunderstood my Autism and have treated me as lazy and just a walking bad behavior instead of a person with a different and disabling neurotype, because of all of my sensory triggers I have had my whole life. Because of all of my stims. Because I am still utterly FASCINATED by things like shiny hair. I STILL love seeing how the light plays in shiny hair, and I still call them AQUA SHINES. Just like I did in fifth grade.

It has ben an achingly LONELY LIFE of me having very few friends and allies because of all who misunderstand and villainize Autistic people as broken and in need of fixing and curing. We Autistics are not monsters. Get to know us and you will see that. Get to sincerely KNOW us and I promise you, you will see that.

Contrary to popular belief, not all or even a lot of poor, elderly disabled and homeless people are trynna game the system.

Most of our homeless and poor are those who have fallen through the cracks due to a woefully inadequate and antiquated mental health care system,
a woefully inadequate and antiquated physical healthcare system,
a woefully inadequate and antiquated judicial system that seeks to punish rather than heal people,
systemic racism, homophobia, transphobia, xenophobia, sexism, anti-Semitism, anti-Muslim hate, and every other kind of hatred and bigotry….
and an immigration system that also discriminates and punishes rather than seeks positive outcomes for those who are, in the vast majority of cases, fleeing their homelands to escape the poverty, hunger, and violence they are sadly encountering in the places they used to call their home, but isn’t anymore.

And our neglected inner cities and impoverished rural areas.

It is maybe 1% who are “just lazy and who ‘game’—abuse—the system.” Read that again. Most people are sincerely struggling—and more and more of us are struggling beyond what we can bear now.

When one has to work 2 to 3 or even 4 jobs just to pay rent, that ain’t okay.

When even our social safety net is designed to keep us trapped in fear and poverty, a never-ending cycle of fear and poverty, that is not okay.

Yes, Joe Biden, along with Bernie Sanders, AOC, and many other progressives in Congress are trying to re-do and expand Social Security, Medicare, and Medicaid—and it is about freaking time. They are also trying to make these programs less hard for us to get, and less hard to be able to keep our benefits.

But so much more needs to be done to eradicate the poverty and suffering of marginalized folks. It can only be done if minds and hearts are opened, and we ALL rethink our outdated, antiquated, negative, bigoted, and racist ideas.

And let us start by dismantling those systems that got us all here in the first place—really and truly dismantling those oppressive harmful systems. Every. Single. One. Of. Those. Systems. And building a whole new system that prioritizes the full equality and dignity of humankind and our earth over corporations and rich people.

Thanks for listening.

My Autistic Dialysis Hell

For years ever since my March 2012 final falling out with my then next door neighbor who was supposed to be a friend and ally to me, G, I have avoided having to go places—anywhere—by myself—ever again. Talking on the phone has gotten even harder for me to do.

The falling out I had with G threw a traumatic switch in my entire body making it so I could no longer handle getting behind the wheel of a car and driving it. To this day, I have not driven again. I still don’t feel comfortable driving.

Losing the friendship of G devastated me to my very core because I wanted with my entire being to believe he was the older brother figure I never had growing up.. He would be so supportive and compassionate, but then every other month, he would get in these pissy ableistic mean moods with me where he didn’t want to bother with me. My mother would have to call him sometimes several phone calls, to get him to be nice to me again.

After that final ugly falling out, I sold my tiny white two door Toyota Tercel, because I was too frightened to drive or go places by myself anymore.

This was the year my lymphedema leg lump grew even bigger, and I began having to have personal caregivers come into my home to take care of me. First, I got caregivers from two agencies my mom paid for, then it was IHSS caregivers.

My health—my body was shutting down even further. Because of G, and the then problems I was having with bullies who used to work in an auto shop across the street who tormented me, and just because I still was not free to be able to pursue any of the lifelong goals I have had for my life since I was a child. I still haven’t gotten to achieve my lifelong goals.

Because that falling out, coupled with the then problems I was having with the nearby auto shop bullies, literally was like losing the love all over again that I thought I had with my father when I was a small child and I stopped being cute in his eyes, and started being a major annoyance to him because I was so damned fucking different than all of my other brothers and sisters.

Losing G’s love and support, and by the way, he has never told me why, he just turned on me and began doing the very things he knew would trigger me, such as the loud man banshee yells he knew I hated from the bullies across the street in the auto shop. G too turned into one of those bullies. Losing his support, crushed me.

Having caregivers come into my home also added to my trauma because well, most NT’s cannot or don’t want to get autistic people and the different way we think, process, and experience and handle life. I went through literal holy hell with one abusive caregiver after another until I finally found Connie in March 2014.

My C-PTSD Trauma Me almost ran Connie off too. But Connie kept coming back to me. She has, so far, refused to give up on me. Like most people have.

In 2018, again in March, she left me once again, this time, not because we were having problems, but to take a job that had really super great pay and benefits, so she could take advantage of the health benefits that that job offered.

I went through several more abusive caregivers while she was gone, this time, abuse that got so bad that I tried to run away from my own home. Abuse that got so bad that my caregiver left me without breakfast, and a way for me to get to dialysis, so Connie had to quit that job and come back as my caregiver.

2018 was also the year my kidneys failed. And I began needing dialysis to stay alive.

At first, my dialysis clinic was on top of any and every problem that arose with non-understanding techs and nurses who didn’t get how to approach and deal with my sensory issues. The then facility director, along with my awesome dialysis clinic social worker, took real care to make sure these issues all got resolved for both the techs and me to be able to work better together. Everyone there had my back.

In August of 2019, that nice facility director got married and left, and her replacement was a woman who from the get-go was totally different. She was harsh and unbending….and soon, my problems escalated because she has never dealt with any of my issues that have come up, well.

With each problem that has arisen since her takeover, instead of her understanding and GETTING it that my meltdown responses are an actual medical response, which is a real something I cannot help when I am triggered, she has made it her mission to become my personal ABA therapist at dialysis. She focuses squarely on the yelling, screaming and cussing that results from my meltdowns—-instead of the very real state of mental PAIN and ANGUISH that I have just been thrown into. And keeps forcing me to work with techs and nurses who provoke these meltdowns.

Yesterday, a traveling tech from LA named Mo, a very handsome young male presenting person, was there helping them out, and he was on my side of the building floor. He wasn’t my tech, but was in the pod East of my pod, working.

I kept watching him with fear because he reminded me of a young 20-ish version of my father. I had the strong feeling that if he were to have to come into my room, he would not be friendly. Still, I hoped that I was wrong, that he would be nice to me if I did meet him.

In fact, when I made my vocal stim noises, singing to the tones of the acoustics in my room, he kept looking right at my room and shaking his head, rolling his eyes.

I honestly hoped he would not have to come into my room at all. I didn’t like the vibe I was getting from him at all. I knew he was going to be unfriendly.

And I was spot-on.

Approximately 1 hour and 54 minutes into my treatment, I pulled the call button because of an issue I was having with another tech, and because my tech was on her break, it was Mo who came striding from his pod, into my room.

RUH-ROH!!

There was NO friendly hello at ALL, and he had a stern, angry annoyed and disapproving look on his face as he looked right at me and then RIGHT down at the large basketball-sized lymphedema lump that is on the inner thigh of my left leg.

One of the somethings that really trigger me into a meltdown–is to not be acknowledged and greeted–one other trigger is to have someone look at me with disgust because of my lymphedema and body size, yes I am very fat, oh well, get over it—-and I have lymphedema too, so get over that too, buttercup—he just walked straight past me to the call button to turn it off—without saying hi to me.

Already, my head was spinning.

He didn’t ay hi.
He didn’t say hi.
He didn’t say hi.
HE DIDN’T SAY HI TO ME!!!!!!!!!
HE-DIDN’T-SAY-HI-TO-ME!!!!!!!!!!!!

I had said hello to him as he walked into my room, then past me to get the call button turned off..
He said nothing back.
I said hello to him again.
Still nothing.

I n fact, Mr. Mo seemed indeed very angry to have to be near me. Because I make strange noises, and sing to the room acoustics.

I’m a godsdammed human being with feelings.

{{{{{{I said hello to this man twice.}}}}}
{{{{{{He refused to respond.}}}}}}

The dam broke.

My response was to finally yell at him in frustration:

“Aren’t you going to say HI to me???”

Because hey, I am here, talk to me. It really hurts to be
Deliberately. Deliberately. Ignored. Hello!

Especially by a young Hollywood type man like Mo who in every way reminded me of a young 20-somehing version of my father.

I do well to go there and try my best to meet everyone, both patients and staff, all halfway. Because I do have compassion and I care about others.

But this arrogant rude AF young man was intent, hell-bent on coming into my room and being deliberately rude to me, just because he didn’t like how I looked, sitting in my chair with my leg lump on full display, the bulge right there for him to see underneath my pant leg.

He was not there to help me like I needed. He was there to just be a rude toxic masculine asshole. Who hated me because I made strange singing noises, and he hated me because of how my body looks. I have learned to see the signs of a medical professional’s disapproval whenever I have to go to any medical appointment. They focus on how I look, and my yelling and distress at having to be there, and call it a behavior and non-compliance. Instead of the real raw fear I am feeling of wanting to just run the fuck OUT of there back to the safety of my home.

Body shaming and disability shaming are what goes on in all medical establishments because medical professionals are taught in their medical schools that being fat and disabled are wrong and bad, so they don’t think twice about treating us like literal garbage.

Until now they had my back at my dialysis clinic, but now they do not, and these problems keep happening. And the problems are getting worse. As usual, their now facility director came in focused—not on my pain—but the full on loud meltdown I was having. Yes, I used profanity again, but during a meltdown, it is next to impossible to not yell, to not scream, and to not use cuss words.

This young man from LA, instead of saying “I’m sorry, hello, I’m Mo, what is your name?” Lost his fucking temper and went off on me. Complete with his finger wagging in my face.

“How DARE you talk to ME like that, YOUNG LADY! WHO do YOU think you ARE that YOU can speak to ME like that?” as he pointed right to my disfigured legs.

I exploded and told him to get out, I didn’t need help, and to fuck off. Then could not stop screaming.

In came Ms. Facility Director. Again focused on my yelling, saying she could hear me clear from where her office is. Focused on how loud I was being, not the state of sheer mental AGONY that her newest young arrogant precious asshole Mo had just put me in.

And they were going to even take me off of the machine early, but I told them adamantly NO! I was going to get whatever dialysis treatment I could get, and they relented and let me stay till my 5:30 get off time. I ended up only getting 3 hours and 18 minutes of my prescribed 4 hours and fifteen minutes of treatment I was supposed to get.

Because I still had to use the bathroom. And they never get me put on at my on time start time, which is at 1:15 PM, Tuesdays, Thursdays, nd Saturdays. I got put on yesterday at 1:40 PM.

My nice social worker who does have my back, has once again been gone on medical leave since the second week of January. She is now not expected back until the middle of April. So I have no social worker to go to and to talk to again.

When people are rude like Mo was, it sends me into a state of utter anguish and personal hell where I flash back to all of the times I was belittled and yelled down and punished and rejected by my father and brothers for just being ME.

I have never done well in environments where the people expect me to act and be the Apple Pie Normal I am naturally hardwired NOT to be. They expect me to rush at THEIR pace. To march to THEIR beat. To just shut up and let them go right ahead and get right up in my face and touch me when I did not ask to be touched. And talk to me however the fuck they see fit, even if it crushes my soul to the ground yet again.

Because oh, it’s just Melissa, she can handle it, because well, Melissa doesn’t matter. Melissa doesn’t have feelings. Melissa doesn’t cry.

Well, guess what? Melissa does cry. She breaks everytime someone comes along and treats her like she is yesterday’s dirty trash.

Because Apple Pie Normal was what was expected of me, and drilled into me growing up in my family. Every fucking single painful day of my life. By my loud yelling screaming domineering father, and my brothers, and sisters. I was expected to never make waves. To never speak up for myself. It was ingrained into me at a young age that what I felt and thought never mattered. I was to just go with the flow or get spanked and beaten and screamed at, then go off in my bedroom away from all of them, a sobbing crushed heartbroken mess.

Be seen, not heard.

Seen, not heard.

Over and over again.

Seen, not heard.

Yesterday’s encounter with Mr. Mo was the last straw. I will be following up with the End Stage Renal advocacy team later on today when I am up for my day.

I will never have another man get up in my face and yell at me like Mo did yesterday, ever again. If they do, it’s war. Because I took it all of my life growing up. I refuse to let them rob from me what little self esteem and self love I have grown to have for myself at the age of almost 61 years.

It’s called toxic masculinity. And I am not here for it anymore.

In the meantime, I spend another night wondering why I even have to continue to go to a place that is just upsetting me even more to be there, than it is helping me being able to just fucking stay alive because my kidneys have both shut down now?

Autism is a disability. Disabled people are human beings. It is time medical professionals be held accountable for how we are treated. Including you, Mr. Mo from LA! Stop judging us. Stop the body shaming. Start listening to us, believing us, and seeing us as the human beings we are.

Thank You, TC, You Are The Second Caregiver In One Year To Leave Me Without Breakfast & A Way To Get To Dialysis

Yes, folks, last month, a part time weekend caregiver who i was paying out of pocket because they did not do IHSS, decided to come to my house in one of her shitty moods, on the morning of Thursday July 9, 2020, and give me a morning from hell that caused me to not get my breakfast, or a way for me to get to dialysis.

Yes…she is the second caregiver in one year to leave me with nothing to eat, and no way to get to dialysis.

This happened a month ago, and now i have a new weekend and backup caregiver who I love….she is Connie’s daughter, and she like TC, takes me places, only she doesn’t come with the mean sarcastic snarkastic moods, and the constant complaining and whining the other weekend and backup caregiver came with. And she is IHSS certified, like Connie, my main caregiver.

That caregiver’s name who came in a bitchy mood, and who yelled at me in my own home, just like the brother sister caregiver did a year ago, was TC.

Here, one month later, is the post i wrote the morning i discovered she had blocked me on Facebook and Facebook Messenger, so that i could not write to her and thank her profusely for how she re-traumatized me that Thursday morning, for no fucking reason other than to just be a mean bitch. No shit. She just wanted to be a mean bitch.

She knew my story…because i told all to her….all about me being an autistic child who grew up misunderstood, yelled at, yelled down, scolded and discarded, and made to always feel so broken and defective. Then the string of horrific friendships, and then caregivers i had…she knew about it all. She said she was an empath who really cared….and that she would never ever do to me what those others did.

For you folks who don’t know me, i am Autistic. I was born Autistic..and i am going to die an Autistic. We Autistics are wired differently than you. That’s not bad or wrong. All i want is for people to understand and get this, get me, and be patient, and listen to me, and hear me and see me. And truly show up for me. It’s all i have ever wanted in life. To be free to be the ME that i am.

In 2012, my physical, emotional and mental health declined so much that i needed in home care…and that is when my problems began….but you can read my older blogs, to get the full story of all of that. I started this WordPress blog in March 2014.

Today, I am now in end stage kidney disease, and have been on in center hemo dialysis for two years.

And no, i’m not sorry i have an attitude as i write this. I am fed up with being treated like a third class citizen. I am still greatly hurt and pissed AF that yet another human being came into my life, and thought it was okay to come into my fucking home and fucking yell and scream at me and slam every thing under the sun in my kitchen right on my dialysis day, all because her home life wasn’t going how she liked it to be.

So…without further ado, below is the post, which i wrote on the morning of Saturday July 11, 2020 at 9:14 AM. And, for this blog, i have added to this post:

“Well, great…my now ex weekend and backup caregiver has me blocked.

So, okay, T, now you can enjoy sleeping until 3 or 4 everyday, but you can now also enjoy life without the money you made working as my carer. You will not be able to afford your nice SUV, with the nice XM radio in it, and you will miss our Sunday outings, with all of the delicious food you got from me, all the trips we took to the ocean and Santa Barbara, and my unique silly goofy company. You won’t be able to buy new clothes. Or afford your car payments. You will be miserable.

But you earned this by coming to my house LATE AF, with a shitty attitude AGAIN, and yelling at me on Thursday. Causing me to go hungry until i was able to get my neighbors to help me with food, AT 1:00 PM IN THE AFTERNOON—TWO HOURS AFTER I, A BORDERLINE TYPE 2 DIABETIC, EAT MY BREAKFAST—- and I MISSED ANOTHER ENTIRE DIALYSIS TREATMENT because you had to come to my house late, and in your hateful full on Princess Bitch Diva mode. Complete with the raised eyebrows above your eyeglasses, and the loud harsh sarcasm that did not have ANY mercy on me. Even when you saw and heard me sobbing and begging you to please stop yelling at me. You would not stop yelling. You kept it up, and kept at it, and kept at it.

You always seemed to be sick, or have this and that thing happen on my dialysis days; you complained about shopping for my groceries; you seemed to have a complaint about everything under the sun. You made me feel rushed so that i could never finish my dialysis treatments. Yes…i was always cutting my dialysis treatments short so i could get out before 6 PM, or i would risk cutting into my hours with you, because you did not like staying past 7:30. You made awful mouth noises that triggered me. Yes, that, you would sing to the music in such a way that i could not enjoy listening to it. You snarked at me when i asked you to stop shaking my wheelchair so i could get decent pictures at the ocean. You also would order gobs and gobs of food when we would go eat, then take half of it home….when you knew i could ill afford it, as i was already paying you out of pocket. And i was paying you for gas, and to stay extra at dialysis when i was having problems with J and M.

I could also mention the other things that were triggers for me, but that would just be me being a cruel person. I’ll just stick to the pertinent stuff.

You had NO fucking RIGHT to come into my home and yell at me and give me the ugly attitude you gave me Thursday. NO right. Then to slam my things around in my kitchen. Then refuse to leave when i kept asking you to leave. Guess what? The neighbors are witness to the whole scene that transpired between you and i that morning. So is Shari. Yes, you left evidence for Shari to also see. (Shari is my kidney center social worker.)

It is people like this who make life fucking hell for an autistic adult who needs care in order to function in life. I didn’t deserve your bullshit.

You are the reason why i have the deep pervasive trust and abandonment issues i have today.

You are why i now fear every new person that comes into my life, that they will do the same to me that you, and all the others, who don’t get, or want to get Autistic people, have done.

In the end, you were a complete fake, and your care and compassion for me was, sorry, fake as fuck.

I don’t usually do posts like this, but today, i am pissed AF, and i am fed the fuck UP with people like you thinking it is perfectly okay to take any and all of your own shittiness straight out on me because you think you can.

So, enjoy your new life, “Princess Diva”. It’s been real.”

I am still pissed and hurt. If you want to be a personal care provider, pro-tip: it isn’t okay to treat those you come alongside to care for like we are your personal punching bags and personal ATM machines. In fact, it’s a hard NO. If you don’t have patience, and are just in it for your own selfish gain, you do not need to be a caregiver….go find another line of work to do.

This Needs To Be Said

I needed to put this into blog form because what i am writing about below, is a very real and frightening thing that our current nightmare in chief is actually proposing. He is basically proposing a new rule that will increase the frequency of Social Security evaluations for those of us who are disabled and already suffering at the hands of a very meager system that barely takes care of us as it is.
I have linked an article below which tells more about this proposed new law….a new law that cannot happen, as it will mean hundreds of thousands of us disabled folks will have NO way to survive…because this will cause many of us to lose our SSI and SSDI benefits.
Just the thought of this makes me sick to my stomach, and every other fight or flight emotional response imaginable.
I have been disabled and unable to work at gainful employment my entire adult life. I am now almost 60 years old, will turn 60 this coming May. On top of my mental disabilities and disability of autism, i now am physically disabled and have end stage kidney failure.
Losing my Social Security Survivor’s benefits will kill me.
The vast majority of disabled people receiving SSI and SSDI are not faking it, as i am not, and already, the re-evaluation process they put us through is more often than not an ordeal that is dehumanizing, cruel, and traumatic.

On top of that, they don’t allow us enough time to fill out the very detailed forms they give you, and eval appointments are made to where you cannot cancel them for ANY reason..not even for dialysis, like i have 3 times a week. And the forms themselves are huge books, literally.
This is like a nightmare come true for me. I have been on SSI, and then SSA for the past several decades, and whenever i have had to go through a re-evaluation, it sends me into an anxiety so high that i get literally sick over it…..and that is not because i have anything to hide, it is exactly because these re-evaluations are downright demeaning and terrifying. They often will send us to a psychiatrist, yes, a psychiatrist, who will yell at us and do all they can to antagonize us with the deliberate intent to cause a meltdown. The first time i saw a Social Security psychiatrist, he upset me so badly i ran out of his office screaming, shaking, and crying so hard i couldn’t hardly breathe. My grandmother and mother had to drive a whole mile to catch up to me, and then, even though he wrote saying i would never be able to work or function in the normal world, i lost my SSI for four months, and i went into a horrible depression where my hair fell out in huge clumps.
Me having to see two such psychiatrists in 1981, then again in 1990, traumatized me to the pint that ever since then, when i am met with a notice of evaluation from SSA, i literally go into a full on panic that i will get another mean psychiatrist, and lose my benefits again because of just this same type of Draconian program the then Reagan administration cooked up to weed out the “supposed fraud” in the system.

I had two more evaluations in 1999 and 2007, but luckily, this time i got a very nice lady to evaluate me, and i had friends go in with me who had my back.
But increasing the frequency of evaluations did not work then. And it will not work now.
When Reagan originally did this, this caused countless disabled people to literally become homeless and die. The same will happen if 45 is allowed to unleash this cruelty.
Thank you, Lydia X. Z. Brown for posting this and for being interviewed in this article.
Now you know why i hate 45.

I Did See The Signs: When Fear Makes One A Prisoner In Their Own Home, Re-vised And Re-Edited Again

A new revised edition of this blog, for more clarity, plus updates.
I did see the signs
of more caregiver abuse as they began to come up
after the nice honeymoon phase i got with both of them, a nice brother and sister package they were
last July and August when they both came to work for me and be my new friends

Sister came July 7, and brother came August 2.
Oh, at first, we were gonna all be a team, a family, the happy accepting family i never had
Right away, i met their mother, who was very sweet to me
They were all so sweet to me in the beginning
I did see the signs
when they kept telling me they still hadn’t read my blogs or the other material i gave them on my autism, my meltdowns, my likes, dislikes, triggers, etc., so that those would help them to better understand and get me
I did see the signs
when, right from the get-go, they were both always late getting to me, and also picking me up from dialysis and then their phones would go dead so i could not reach them to find out when they would be getting to me or even IF

I did see the signs when shortly after brother began working for me, he went to fix me tuna sandwiches for my dinner one night,
and he would not listen to me when i kept telling him how i wanted them to be fixed.
He went and put very little mayonnaise in the tuna mix,
they were dry,
and i had to ask him to come back in and redo them,
and he got irritated because he was leaving to go party with his friends..
He did redo them but showed his irritability towards me at having to do so.
But it was still the honeymoon stage, so he quickly apologized, saying he should of listened to me when i told him how i wanted the sandwiches fixed
I did see the signs
when i had to walk out of an appointment with my primary care physician because brother ordered sister not to sit there waiting with me, and he needed her to come help him.
I did see the signs
When i was ordered to go stay with him and his mother so they could pull all of my carpets out of my living room and bedroom. The reason? Was because my carpets were agitating his asthma. He said if i did not go to his house to stay, and let him pull my carpets out, he would quit working for me and i would have to find another care provider.
I did see the signs
when after one and a half weeks at his house, he ordered me to take a shower, and then when i explained to him the accomodations i needed to be able to handle taking a shower, he got irate, refused to accomodate my shower workarounds, telling me showers are not meant to be pleasant and comfortable
He also told me “Why can’t you take a shower like normal people do?”
All i asked for and needed was to be wiped, then to have a towel on my transfer chair so that i would not have to sit on the cold surface, and another towel on the bottom of the tub, so i would not slip in the tub
He accused me, wrongly, of not caring about myself!!
Then threatened to quit me if i did not take that shower—even though i was upset, having a meltdown, frightened and in tears
Finally, when i had completely broken down
Sitting buck naked on the toilet in the bathroom cold and shaking,
he snapped right back to nice and compassionate and i got a pleasant shower
I never forgot that though, because that showed me that he had a temper
I am afraid of tempers because of the way my father and most of my siblings treated me growing up
Much similar to the way the brother caregiver was treating me
The way G, a friend i used to have, treated me from 2006 through 2012
Then a long string of abusive caregivers from 2012 to 2014, then 2015, when Connie and i needed a one month break
I did see the signs
When he got angry at me that Saturday after dialysis for needing him to replate my food and get my backpack inside where it would be next to me before i could eat the KFC he had bought for all of us
He had plated all of my food on the same small plate, and all of it was bleeding into each other. That is a sensory issue for me, a big one.

Sensory issues mean i need for things to be a certain way
why didn’t he respect that?
Why couldn’t he respect that?
I did see the signs
when it took a whole three weeks for him to get my floors done in my house
I did see the signs
when i finally came home on Monday October 8, 2019 to find bright canary yellow paint on my living room walls, many of my things moved completely, waaaaaaay too many of my things missing, my computer speakers no longer working, and my TV sound bar no longer working, when he again got angry at me and accused me of not appreciating the hard work he had done for me, when i did appreciate their hard work alot, but all i could see was that i had lost my things, my space, my HOME!
There were lots of fun and happy times, especially in the first 5 months of them working for me. I really did have some really awesome times with them in the beginning. At the end of last August, he bought a nice car, and immediately took me through scenic back roads, up to his house, then on a drive up to an area of Pismo Beach called Shell Beach, to sit and watch and hear the ocean. We talked so much that day, and that day, i felt a real bond between me and him begin to develop. We then ate at Five Guys Burgers in Arroyo Grande, which was delicious. The next week, we went back up to Pismo. The next day we ate at the Rock & Roll Diner in Oceano. We also went on other spontaneous outings, to San Luis Obispo, to eat at two Italian delis there, then Santa Barbara, to eat at another Italian deli. We went on alot of outings in that car, which had SiriusXM Radio in it, so we could enjoy my indie rock and alternative rock tunes. I was so happy until the mental and emotional abuse began to happen.
But the signs were always there, always coming, always popping up.
They took over my middle room, moved their computers in, their clothes, their refrigerator, their couches and beds, their food, and my electric bill went up past $100 for the first time ever….with it being $166 in February. My electric bills before they moved in? Were always well under $60 a month. The highest i had ever paid was $68 when we had a prolonged hot spell that lasted two weeks.

My gas bills also went up to $55 and $68 dollars, because they both were always taking showers at my house, and using my washer and dryer almost daily, to wash their clothing. In addition, they would often let their friends take showers and use my bathroom.
They often asked me for money, because they both always seemed to be dead broke—and always out of gas for their cars. I had to pay for their meals out with me, pay for their cell phones to be turned back on, as well as pay for their gas and food, snacks, and his cigarettes. If i didn’t, i would not get care. No, they never threatened me, i just knew it would happen. And when he was without his ciggs, he was a bear.
I even paid for some of her medical visits. I have an IOU paper that she and i both signed for $280 of the much more in $$$ that they both took from me these past 10 months. In addition, trying to get him to pay me for the monthly difference on my electric bill each month was like pulling teeth.
Both of them would often actually block me from coming into the middle room. In addition, they both played games with me: when i needed them to come, they would tell me they were coming, then take their time, then i would have to, on painful hurting back, hips, knees, legs, with the leg lump, struggle to walk back and forth and back and forth, repeatedly to my laundry room to call for them to please come help me, please come sit and talk to me, please just come BE WITH ME.
Thanksgiving was a beautiful time with his family. Delicious food, and all of them were so sweet to me, including my two brother sister caregivers.
Then in December, things got worse. One night at the end of a dialysis treatment, dialysis, sister decided to rush me out of my chair, and to get my dinner. When i am done at dialysis, i like to wind down and say my goodbyes to my machine, who i have made an imaginary friend out of to cope with my dialysis. I have always made imaginary friends out of roads, highways, and electronics, to cope with being neurodivergent me in a harsh neurotypical world that still views us autistics in a very negative and wrong manner. My machine’s name is Rebecca, and she is the truly genuine sweet angel who gets me through what would otherwise be unbearably scary dialysis treatments.
Sister chose that night to aggressively pursue me rushing so that she could get her kids their Christmas tree, when she could of done that any other night, but the night she was working for me. Just the prospect of her rushing me to get my dinner, was unbearable enough. She even went so far as to tell me i was causing her kids to all cry.
She did go there, but never came in, just sat out in her car, arguing with me via Facebook Messenger, which threw me into even more of a bad meltdown right in my dialysis chair! And then she left, without picking me up to take me home! I finally got hers and brother’s mom to come pick me up….
90 whole minutes after my dialysis treatment.
Then a week before Christmas, we took an outing to Solvang, and again, HE got pissed at me for asking him to make sure my backpack was on my wheelchair before we headed to get Danish sausages and Abelskivvers. He said loudly: “Why do you always have to be so obsessed over that damn bag? It is really quite annoying!” Then when i asked him to get my glasses so i could read the menu, he again got pissed, saying the same thing, then he put my glasses back in my bag in the wrong way that could of broken them.
Why was i always so scared about having my backpack and glasses with me? Because he once forgot my backpack. It was left sitting in the parking lot of my kidney center one evening when he came to pick me up, and he had to go back to retrieve it for me….so yeah, damn skippy, i was going to be hypervigilant about that backpack from then on!
We were going to also take a drive to Los Alamos one afternoon, but she decided to take his car, and took it for the entire afternoon, leaving brother and i stranded here at my house with no way to go anywhere. I spent the entire afternoon messaging her over and over to beg her to please bring the car back. She would say she was coming, but then fifteen minutes, then twenty minutes would elapse, then a half hour, then two hours, and she still wasn’t here with the car. Over and over, she played this game with me. Finally, we needed the car to go get my dinner, and she still wouldn’t bring it back to us. She began telling me “Ya!” over and over via Messenger, taunting me, and i told her i did not like being taunted….
We finally got the car back in time for me to get my dinner, but my dinner was also later than i had wanted to eat.
When he and i went anywhere, he would always turn the stereo in the car up full blast, without my permission, making me feel like he was trying to drown me out. I had to shut up and put up. Because by that time of the tuna incident and when he ordered me to go stay at his mom’s so he could pull the carpets out, i had seen the signs of his temper.
A week before Christmas, we had to go up to San Luis Obispo to consult with a cardio-vascular surgeon about the placement of a second fistula, because the one i had had surgically placed in my left arm back in September had failed. He decided suddenly that i smelled, that i had a foul body odor, and that he needed to have his window all the way down all the way up there. This new thing upset me, because here, now i was being ordered to take showers, and i was taking those showers every fucking time i was ordered to do so by him. So why the fuck now should i stink?
When he saw me finally in tears in the passenger seat, he relented, and put his window back up. But said i needed to take a shower ever day now. You know why i hate having windows down when riding or driving at freeway speeds? Because the sound makes a roaring sound in my ears, makes my ears pop, and makes it impossible to hear the music on the car stereo. Then he said again, that i had candida on my body and in my hair. A month earlier, he and his sister both convinced me to even shave my head. I did as told, because, according to him, my scalp had candida. Note: Connie worked as my caregiver for 4 years, and never once did she notice candida on my scalp or body.
Another note: i do not dislike taking showers, however, i had bad experiences with taking showers and baths growing up, was always made to hurry up, could never enjoy myself in the shower or bathtub. That alone has stuck with me all my life, and now that i have the lymphedema and lymphedema lump, and joint pain, it is physically hard, and tiring to take showers. I do take them though, so that i will not smell and gross others out. But it is hard for me on all levels to shower and bathe.
Then, at Christmas, he got in yet another one of his dark moods as we got to his house. He set me up in the living room, then proceeded to take over the remote on the Amazon Firestick, and watch dark unpleasant videos i didn’t enjoy at all. He would not once let me watch anything i wanted to watch. He also would not serve me any refreshments/appetizers. Then after our dinner, he turned on this awful Holy Roller Hellfire and Damnation Bible thumper that he knew i hated, and when i began melting down, he refused to turn him off. His mom came to my defense and yelled at him to shut that crap off, but he still refused, saying he had the right to watch “Christian” stuff on Christmas. I had to go into the back part of the house to get away from that awful preacher.
Finally he snapped out of his dark mood, came and apologized, then let me have the remote. But the damage was already done. My Christmas? Ruined.
A day after Christmas, he totaled his car. His next cruel act was to tell me that he had run over Rebecca in that accident, and had killed her, and i was to never talk to him about her or even mention her name ever again…..that really hurt me to my very core, because i still count on Rebecca to get me through each and every single one of my dialysis treatments! He also stopped coming into the dialysis treatment floor with me, which also hurt. Before his car accident, he always told me to say hi to Rebecca, and he often came into the treatment area to spend time with me while i was getting my treatments.
Then in January, when i went to a mental health center for counseling, he went in with me, making me believe he was going to stay with me during my counseling session, then after 15 minutes into our session, he abruptly left to go take a phone call. He promised he would be right back, but then as my counseling session kept progressing, and there were still no signs of Brother’s return, i got frantic, as the counseling center was about to close. So we called first him. His phone went straight to voice mail. Then we called Sister. Her phone, also went straight to voice mail. So we called my kidney center social worker, who has always gotten me and who has had my back from the get-go, who already knew about Brother and Sister’s previous history with me….finally, we called their mom, and she knew nothing, so we called him again, and he finally picked up.
When he finally came, he was irate—at ME! For being scared and upset—when i had every fucking right to be pissed and scared. Instead of him realizing he shouldn’t have abandoned me, he lit right into me, in a mean accusing tone of voice, he told me: “Oh, it’s all about you, Melissa, always about you, it’s always got to be about you, you are so selfish!” Finally, when i told him, tearfully, how hurtful and cruel he was treating me, he finally felt bad and apologized. How would he have liked being abandoned, with no way of knowing when or even IF his caregiver was coming back to get him? He apologized. But again, each of these episodes made me even more afraid of him.
And, things only worsened after that. Sister began getting meaner. Along with him. Many a morning, if i would dare ask them to do a thing the way i wanted it done, i was given attitude, then threats that they were going to leave me, with no breakfast, and no way to get to my dialysis treatments.
Next came the snow white scrubs he and sister began wearing to my house. Snow white scrubs, top and bottom, just like the old movies of staff at a mental institution. I HATED those scrubs! Along with those, i suddenly became a germ to Brother, and he also started wearing a face mask to work, which put even more walls up between him and i.
The white scrubs. The face mask. In my own home.

He began yelling at me for taking out a paper towel to wipe my nose when in the car with him, saying it was germy, and that the particles from that paper towel would transmit my germs to him.
At the same time, if i came into the room to tell them i was depressed and needed to get out, Sister would literally yell at me, and berate me for coming in there and ruining her happy mood. She began yelling at me just like i would hear her yell at her children, harsh mean yelling that made me feel belittled and frightened.
When i asked Brother to stop cutting my toast all different ways, and cut them in half, diagonally, he got pissed, and told me i needed to just leave them alone and let them do their jobs, that i had no say. He also liked to leave space between the middle of the bread and crust with the butter and jam, which i also hate. He also liked to butter my toast when it got cold so the butter was not melted. I hate that. In addition, my oranges often tasted like his and sister’s cologne and perfume. I hated that too.
In addition, he wanted me to just not be in the kitchen anymore, because i was right in their way. He made me rearrange my kitchen so that it could be convenient for them, and not me anymore.
But just as suddenly as those moods would begin, they would stop, with both Brother and Sister. They would become nice again. Then it would cycle right back to the bad moods again. It was always up and down, up and down.
In January, was when we we began having meetings with my kidney center social worker. At first, both Brother and Sister seemed to listen. But then as time wore on, they began not listening. These meetings had to happen though. I wanted and needed to make this work, because the alternative would be more possible mean caregivers like the ones i had had in the past, including K from last year. I kept hoping for the best. I kept giving both Brother and Sister the benefit of the doubt. Because i foolishly believed they loved me, they just needed to learn to understand and get me.
Even so, they always told my kidney center SW that i used my autism as a shield, a crutch, and excuse, and that my physical disabilities were not real either.
He even got irate when i tried to explain that curbs, curbs with bushes, and unstable walking places were a thing. He said to both me and my social worker “I don’t appreciate being told where i can park!”
Excuse me? I am a fall risk!
March came, and still, Brother’s car wasn’t fixed. This presented more stress for me because again, i never knew when Sister would take the only working car and leave brother and i stranded. Even on some dialysis days, she would take the car at the last minute, leaving me worried that she would come too late to get me to my dialysis treatment on time. Worried that i may not even get to dialysis.

Another thing is that whenever brother and sister would take me to medical appointments, they would sit behind me in the exam room and basically not have my back if i was talked down to or talked to rudely or rushed in those appointments.

At the end of March, he got a white loaner car, and his car was supposedly now finally in the shop, finally being worked on. Also at the end of March, he got in yet another one of his shitty mood with me, which caused my blood pressure to spike to literal stroke level at dialysis, and i was unable to get through that treatment without them having to put a clot busting drug in my catheter. I cried the entire time i was hooked up to the machine (Rebecca) that Saturday.

What happened that time? As he drove me to dialysis that morning, he got another bug up his ass, suddenly began changing radio stations on me and not letting me hear the music i was enjoying, saying the lyrics were really negative, and were bothering him. He proceeded to put it on a station that has the very hellfire and damnation type of preaching and type of Christian worship music that he knows causes me to have PTSD flashbacks to my times going to churches where i was hurt and traumatized. I made him turn it off. He then took out his phone and told me “Oh, i know you will looooove thiiiiiis song!” in a tone of voice i found to be chidingly cruel. When i recognized that song as one of the Christian songs that was a PTSD trigger for me, he got full-on belligerent, telling me he was going to listen to whatever he felt like listening to in his car, and i had NO say. I had a screaming meltdown, and that was how he left me, in the lobby of the kidney center, coldly leaving me there, sobbing. It ruined my entire dialysis treatment that day.
A week later, he took me on a trip to Tepusquet, my old home, and he was being all kinds of nice to me that evening.

And then, Sister’s moods worsened again in April. In May, a week before my birthday, was the whopper of them all. On Tuesday May 7, neither of them were here. It was getting later and later….my blood sugar was dropping, and i needed to eat breakfast. So i called him. Then texted him. No answer. Then i called her. She did answer, saying “I am in a bad mood, and i am not taking any shit off anyone today.” At 11:12 AM, when they were still not here, i called my kidney center SW frantic and in tears, screaming. Next thing i knew, i heard several loud loooooong horn blasts, and they both came charging angrily into my driveway, yelling at me, from the car, both of them yelling at me, and calling me ridiculous, saying this wasn’t autism, this was something else bad, and i cannot act this way. They both kept up the horrible yelling as my SW was listening, and when he realized i was on the phone with her just having her help to try to calm me down, he literally picked up my phone and hung the phone straight UP on our call. They then proceeded, several times, to threaten to leave me….with no way to get my breakfast, no way to get to my dialysis.
My SW called me back, and talked to Brother, and then he finally calmed down, and got me my food, and then took me to dialysis. But i was late, and as a result, did not get put on the machine till after 1:00 PM. I was supposed to be there at 12:15 for a 12:30 put on time.
And that treatment went horribly. I could not calm down at all. The machine, Rebecca, kept alarming non-stop. And my blood pressure was literally at stroke level. They had to put Acti-Vase In my catheter yet again, to make it run so that i could get through my treatment.
Everytime they would upset me, it would affect my dialysis treatments.
That night, Brother picked me up, in a soft sweet mood, telling me it would all be okay. That he was not going to do or say anything to upset me anymore, because he hated it when i was upset. But what happened next, was we got home, where greeting me was my spaghetti dinner with so much cheese on top, it was too hard to put a fork in it.

Already still rattled from that morning’s events, i got upset again. And at first, Brother was willing to fix it for me. Until Sister popped in to start in yelling at me again. She called me ungrateful and selfish, and said that i did not appreciate anything she and Brother did for me. I went into another screaming spell so bad that Brother again lost his temper, and together, they both stood in the doorway to my living room, screaming at me. Telling me again that this wasn’t autism, this was me being an abusive monster. I plugged my ears, pleading with them to just take me to the bus station, so i could leave…..I could not bear to hear their yelling anymore…..
Then they both left me, in tears, sobbing and shaking. Before i could think, i pushed my entire tray table of food to the floor, and then
I tried to run away. I took a taxi first, to a friends who was sick, then a Motel 6, but got scared, and came back home. But i still wanted to run away.
I got Connie to come the next day, and together we talked to Brother. He agreed to have Connie start working for me Mondays and Fridays, and he would still do the rest of the days….no more would his sister be in the picture.
Things went great until he figured out he would lose some of his income by having Connie come as a second caregiver.
He still treated me really super great though after that. But he kept trying to turn me against Connie.

Sister just got even meaner though. So mean, that one day, the week before Father’s day, she got in the car, to drive me and brother to his house and would not speak to me at all, and when i would try to talk, she would talk to brother loudly right over me, making it obvious i was not welcome in the car.
And then on Father’s Day, we went to his house for a BBQ. All went well, until sister’s friend, who i had met before, showed up, and began telling me to stop the stimming i was doing. I was just sitting in the kitchen tapping on my cane. She told me to stop. I tried to explain about my autism and why i stim, and she goes: “Hon, i already know you’re autistic, and know ALL about autism. I am around alot of autistic children. Everyday. We are all alittle autistic, ya know. We all have our issues. We just don’t broadcast it like you.” She got right up in my face, like she was going to hit me.I got pissed and told her off, told her to get out of my face, that she didn’t know me, and then sister came in and began yelling telling toxic friend “Oh, Melissa acts like this all the time! “ then berating me for having my SW call her to try to reason with her for the umpteenth time the week before.

I had to have brother take me home early from that party.
Then a meeting followed between me, Brother and his mom, with them again trying to talk me out of having Connie as my secondary caregiver. In that meeting, i saw a whole other side of both Mom and Brother that i found to be unsettling.
The next day, back to the cath lab i went to try to see why my catheter wasn’t working. Brother was in that same cocky mood all that day too. And it made me sick to my stomach. At IHOP that evening, he again berated me for wiping my nose at the table, and for holding my hand over my salad the way i was holding it.
That was Friday June 21. That night, he went out with his friends and left me all alone.
And then, on Saturday, the 22 of June, he came dressed in dress slacks, dress shirt, and reeking of cologne. He and sister both already knew full well i hate tasting their cologne and perfume on my orange and apple….yet here he was, with full blown cologne on again. Aaaaand, he was in a full-blown bad mood. When i pointed out to him that his cologne would be on my orange, he lit into me, threatening right off the bat he was going to leave. Then he did—-finally making good on his and sister’s threats to leave me without my breakfast or any way to get me to dialysis—at all that day.
When i got my neighbor to help me, Brother flew back into the driveway, sending him home, then yelled at me and left me again as i sobbed, pleading with him to please give me food and take me to dialysis. He got back in his car, telling me coldly: “No worries, you won’t starve to death, you will manage!”
That was a voluntary QUIT. And criminal negligence. 
The following is what he wrote about that Saturday—i received this in response to an email i wrote to him because he now keeps trying to submit timecards—for the wrong amounts. Not gonna lie, this thing he wrote was cruel to the core, and it just solidifies why i have the trust issues i have.
[Trigger warnings for extreme ableism, Othering, body shaming.]
“I just read up to the part where you try to use autism to justify why you believe it’s ok to be a horrible person to anyone. It’s disgusting how you treat people and for you to be ok with it . Getting upset is a part of LIFE! Not getting your way and throwing a fit about it IS NOT AUTISM ! FYI I was not there for your autism , and people like you who use it to take advantage of the system and use it as a crutch is wrong . I smelt strong of cologne so I wouldn’t have to smell your pungent sour Oder due to you not wanting to bathe and not wanting me to wear a mask . Please don’t write back as I will no longer read your emails due to you thinking it’s ok to still be nasty and hateful.”
These are the same things he would often say to me during the past several months, whenever he was in one of his dark bad moods.
I called an ambulance to be taken to the hospital so i could dialyze there, and so i could stay away from here, because i was now frightened, because he still had keys to my house. I am glad i did that, because now not only is all of the brother sister team’s abuse well documented with my kidney center social worker, but it is well-documented with Adult Protective Services, the hospital where i went, and my local police department.
Connie is now back as my caregiver, and the brother-sister team are out of my middle room and life.
I do intend to see to it that they never get to do this to anymore vulnerable people. I also intend to find a way to spearhead legislation with teeth that will finally hold abusive care providers strictly accountable, and not be able to work in this field ever again.
Postscript—because of what Brother did by leaving me last Saturday, i almost fell in my driveway. Again, i am a fall risk! I am also a borderline Type 2 diabetic, which means i need to eat on time. In addition, missing even a single dialysis treatment can also set into motion a chain of events that can shorten my life, and it did set in motion that chain of events.
I was not able to dialyze at the hospital that last Saturday. I went into the kidney center and got 3 hours of dialysis that following Monday, but then when i came back for my Tuesday treatment, my catheter stopped working, and i had to miss yet another dialysis treatment to go to the cath lab—again—to get another new chest catheter placed in my chest. I am now dialyzing great again.
But they took my artwork from me. They took several of the drawers out of my desk. They took my old vacuum cleaner that was my grandmother’s that still works after 40 plus years. They have taken from me so many of my things that i need and want back. Most of all, they robbed me of what could have been a great time of real joy in this past season of my existence.
And i am not going to forget this.

A new update and notes to the above, written Wednesday, September 4, 2019:

Because of the stress i was under during the time the brother and sister were my caregivers, i was never able to follow up to get my second fistula, nor was i able to follow up on getting the first fistula surgically moved up closer to the surface of my arm, so that it would start working. FYI, a fistula is an arm access that is surgically built in one’s upper or lower arm using a vein and artery to make up the fistula, so that the person can get better quality dialysis. It is meant to be a more permanent access port for dialysis, and is much more reliable and poses less risk of infection, than a chest catheter does. But at this time, i still am waiting to get a new appointment with another vascular surgeon, because i need to get this taken care of. This time i am going to go for an AV graft. That is an artificial graft that is placed in the arm, and is also as reliable as the fistula. Unlike the fistula, which takes anywhere from one to three months for it to mature before it can be used, an AV graft can be used for dialysis access within 48 hours of it implantation in the arm.

In the months when the stress began to mount with the brother and sister, it began to affect every single one of my dialysis treatments. My blood pressure would routinely spike wildly up and down, and was often at stroke level, my machine would alarm constantly, and once about every two weeks they had to put the Acti-Vase in my catheter in order for my treatments to proceed. Then it progressed to me making weekly visits to the hospital cath lab to have my chest cath replaced. They finally had to put a balloon stent in the artery or vein?—I don’t remember which— and have yet another new chest cath placed in my chest in the week after the brother abandoned me.

They did also finally return my art, my desk drawers, my white vacuum, and two of the three folding chairs they had taken from me. But i had to have my locks changed on my post office box. Because he kept the key. And i am slowly working to replace all of the other gazillion things they took—stole—from me.
But i am not the same.
I love that Connie is back. We are doing better than ever. She cooks for me almost every night—delicious meals of enchiladas, Mexican rice, meatloaf, ribs, etc. She makes my breakfasts the way i ask for them to be. She plays my music in her car, on her Pandora Radio. We go out to eat often. We laugh. We talk. She has no need to take over my middle room or my house. Or to stay away from me so that i am left lonely and all alone each afternoon. Like the brother and sister always did to me. She is never late getting to me, and picking me up at dialysis. She comes right into the lobby to sit and wait for me to get done at dialysis, so that they all know she is there waiting for me.

The brother and sister were always out in the middle room, leaving me all alone every afternoon. I hated that. I SO hated that! They would often come late to my house, and were often late to pick me up at dialysis,as much as 90 minutes late at times. And to top it off, they would often not even bother to come into let the techs know they were there. The techs always had to go out in the parking lot to hunt for them. The brother and sister always seemed to make it a daily game with me as to how late they were going to be to show up for me, and when they would be here for me. It made for unbearable daily stress, and made me not want to even wake up most mornings.
I wanted to stop my dialysis and die. I felt no hope. I felt only thick blackness and despair so deep when they were in my life, that it sucked me dry. It took that final act of cruelty, him driving off and leaving me with no breakfast and no way for me to get to dialysis–to open my eyes that they truly did not care about me—they were in it only for what they could gain materially and financially. And because i believe, i truly believe in my heart of hearts that they are cruel cold-hearted sadistic mean monsters.
No. I am not the same. I am plagued by almost nightly nightmares of the brother and sister. Sometimes the dreams are where they are nice and apologetic. But many of my other dreams are of them being mean and yelling at me over and over and over again…and me trying to escape their awful yelling and meanness. Thankfully, i can sometimes wake myself up before the dreams go any further. But they happen, and i hate these dreams.
And my trust issues are even more pronounced now than they ever were before. I am afraid of getting any other caregivers for fear this could happen all over again.

And i hate the memories that just won’t go away. Both the good and the bad memories i had of them, that began to outnumber the good ones.
The signs were all there. But fear and wanting to believe they were good people who were just uneducated, who just needed to learn, kept me from firing them all the times that i could of fired them.
I will never forget the hell they put me through. Yes. It has changed me forever.

Yes, This Needs To Be Said: A Story Of More Abuse

[TW/CW: Caregiver abuse, two brief mentions of sex offenders to illustrate the comparison to that as a means of having a similar registry to identify caregivers who abuse, deliberate cruel ableism, caregivers Othering a multiply disabled person, caregivers playing on my vulnerabilities and fears, willful and deliberate caregiver neglect, mental, emotional, psychological, and financial and physical abuse, the withholding of vital medical care, and the gaslighting of ME.]

And no, i will not delete this post, because these individuals in the following story have subjected me to holy hell for the past 9 plus months, and reported documented truth is not slander. Because caregivers who abuse need to be called out, publicly shamed, and held to the strictest account possible. Not only that, caregivers who abuse the vulnerable people they are charged to care for, actually need to be treated just as sex offenders do, and be placed on a national registry, then banned from ever being able to ever be care providers ever again.
Yes, this post needs to go VIRAL. So share this WIDELY, PLEASE.
And yes this is a long post.
Having intestinal upset this fine early morning, which i know is due to the state of pure anguish that my now ex caregiver S#$%@ has left me in.
I slept for several hours, but now am sick.
Btw, when i do sleep, i have been having nothing but horrible frightening NIGHTMARES about S#$%@ and his sister, who were my caregivers from July of last year until Friday.
This morning, i am utterly sick to think that a human being who professes to love and care so DEEPLY about my health and well being, actually got in his car and BAILED on me on Saturday, June 22, 2019, leaving me with NO BREAKFAST, AND NO WAY TO GET TO MY SATURDAY DIALYSIS APPOINTMENT.
I had to actually miss a dialysis treatment due to his cold-blooded cruelty. For the first time EVER. Before Saturday, i had never missed a single one of my dialysis treatments! Not a single one!
To think that he deliberately drove off, while i, crying and sobbing hysterically, plead with him to feed me, and get me to my dialysis, while telling me cold heartedly, “Don’t worry, you won’t starve to death, you will manage”, as he got into his car and drove off, he needs to be called out and publicly outed and shamed by any of my online friends who have the spoons to do so, because this was serious criminal endangerment that he elected to put me in on Saturday. It presented a serious risk to my health.
In trying to get my next door neighbors to help me, and they were going to help me, but then got afraid to answer their door to me, because S#$%@ drove back in, sending them away, making them think that he was going to help me after all, instead, after my neighbor went back to his house, S#$%@ left, and drove OFF on me, abandoning me, a sick 59 Autistic adult with end stage renal (kidney) failure, when he knows that i NEED to keep all dialysis treatments—or i will DIE.
How did this all start on Saturday? Because another friend had finally been able to talk to him and bluntly called him and his sister out on their past nine plus months of abuse. So, he was already angry and in a bad cocky mood. Because, on Saturday, he got to my house wearing so much cologne that i knew i would taste it on my orange that he was peeling. (A something he already knew would upset me, as i had asked him several times before not to peel and section my orange with cologne on his hands. I have asked the same of his sister as well, when she worked for me.) I only asked that he wash his hands so that i would not have to taste his cologne scent on my food. His reaction was to get highly pissed, and a verbal argument ensued, where he kept threatening to leave, telling me he couldn’t take this anymore, and then he did leave. I was going to get my next door neighbor to help me, but when S#$%@ came back, making me think he was going to help me, and then left again, and i went back to that neighbor, they were now afraid to answer their door to me. In addition, as S#$%@ got in his car to drive away, i was sobbing, pleading with him to please feed me, please don’t let me go without my dialysis, and he laughed at me telling me not to worry, that i would not starve to death. That i could manage.
I almost fell while walking on my way back to my house. Please let that also sink in. That i almost fell due to S#$%@’s deliberate and willful negligence. Yes, i am a fall risk due to my limited mobility.
Some of you friend requested S#$%@ on Facebook and messaged him in the hopes he would accept so that he could learn about me, and why his continued ableistic cruelty was damaging me and why it could not go on.
I have since learned that he told one of my friends who tried to reach out to him to explain about my C-PTSD and why my meltdowns happen and how to handle it when i have a meltdown, that what they wrote was bullshit, that he had an autistic friend, who was nothing like me. Sounds so much like the autism martyr parents, hmmmm?
He sadly ignored all of your (you, my friends’) attempts to reach out to him to educate him, except for my one friend above. Shortly before he bailed on me on Saturday, i found out he had posted mean comments on another friends’ comment thread.
Over the course of these past nine months, i had over a dozen meetings with him and my kidney center social worker, some meeting where his sister also my caregiver, came, where my social worker and i both made repeated attempts to try to get them to understand my autism and meltdowns and sensory issues/triggers—-but those meetings did no good. Those meetings were hard on me, because neither he nor his sister got what my social worker and i kept trying to explain to them. Both S#$%@ and his sister seemed hell bent on misunderstanding me and treating me like a naughty child all the time……and this put me through literal mental hell and trauma, which has not helped my physical health one bit.
Yes, i have spent these past 9 months being mentally, emotionally, and financially ABUSED, MUZZLED, OPPRESSED, AND SILENCED by him and his sister. They both literally charmed me, then took over my empty middle room, moved into my middle room, took over me, and my entire home. I lost all control, and the will to even live anymore. I began to feel safe only when i was at dialysis, where everyone there loves and accepts me! And sheer dread when i knew they were picking me up from dialysis to take me back to what i began to feel as a hellhole, instead of my home. I dreaded it because i began to feel unsafe—in my own home.
Where i used to be able to pay my bills, now each and every single month i can barely make ends meet, and have had to resort to posting several Facebook fundraisers in order to get through the financial raping that has occured at the hands of this caregiver and his sister.
They basically would routinely ask to borrow money, but never repay me. They would tell me they had no money to gas up their cars, so i would have to shell out for their gas, or face them not coming, and not getting me to dialysis and all of my shopping and errands. In addition, i had to pay every month for their phone service, or not be able to get them on the phone or via Messenger and text message.
I had fun times with them—alot of fun times. We went places, and i would often hang out with them and their friends in the middle room. But those fun times always came at a cost and punishment:
*them always being late to get to me, and when i would try to reach them, their phones would die, going straight to voice mail, resulting in me having full blown panic attacks and meltdowns,
*several times me being late to medical appointments, as well as dialysis,
*them being late, sometimes VERY late to pick me up from dialysis.
*Me actually getting left at a mental health counseling appointment (more on that later).
*And finally, me being denied breakfast, and finally having to miss my first dialysis treatment ever, on Saturday.
Below describes much of the hell i was subjected to.
In September of last year, was when i first saw signs of both their moods. (Their lateness was always a problem though from the start.) Firstly, i was made to go stay at his mom’s so he could rip all of the carpets out of my living room and bedroom, because the carpets were affecting his asthma. If i did not agree to this, he was going to walk on me (quit). After a week at his house, he approached me one morning with a dark look on his face and ordered me to take a shower, where, as we were getting ready, he first laid into me for asking him to wipe me before i got into the shower, implying i could do that myself, which i CANNOT, because it hurts my shoulders and arms to reach to do that, then because i needed to have a towel on my transfer bench, and the floor of the tub, so i would not be cold, and slip in the tub, he told me “Why can’t you take showers like a normal person?”, and if i did not shower, he would quit, and i would have to find another care provider. I was having a meltdown, and he kept escalating it, accusing me of not caring about myself. I have always been hesitant to take showers because they are physically hard for me and because of past caregivers, and bad family experiences when i would bathe/shower…specifically, me always being rushed through my baths and showers, and never allowed to enjoy my baths and showers…and he seemed hell-bent on making that shower an as unpleasant as possible experience for me. After he had me in full on tears, pleading my case to him, he finally grew his heart back, and we ended up having an actually pleasant shower.
Even so, i can never forget that first shower experience with S#$%@.
And then, a few days later, he got mad at me again for asking him to please re-do my food better so i could eat it, another huge sensory issue, calling me annoying, and what happened was me spending an entire night and set of spoons, going through my Facebook memes to educate him on my autism.
We got along better after that. After three weeks at his house, i finally came home—to canary yellow paint slapped all over my living room walls, and my entire house all rearranged. My computer speakers no longer worked, so he had to give me a pair of his computer speakers. In addition, my TV sound bar would not work, and we both played hell trying to get it to work again, which, thank God, it did, but i told him to not play with that ever again.
In addition, i no longer had my Living Bible, a huge plastic box of gel pens, several adult coloring books, and a whole bunch of other things, were now all gone.
My Thanksgiving at his house was awesomely beautiful though. Delicious food, and everyone there were so sweet to me. Including S#$%@.
But then in December and at Christmas, he, and his sister, got in yet more bad moods with me. During a trip to Solvang, he got impatient and angry with me when i asked him to not forget to put my backpack on my wheelchair, and then when i needed my glasses to read the restaurant menu.
One night, Sister literally tried to rush me at dialysis so that she could get her kids a Christmas tree, when she could of done that any other time, except for her work hours with me. She accused me of making all four of her kids cry. I tried to get S#$%@ to pick me up. Their mother came a full hour later to pick me up from dialysis.
On another day, she began telling me “Ya” over and over in Messenger, after telling me she was on her way, and never coming, when she had taken S#$%@’s car, and left he and i with no way to go anywhere, obviously making fun of the state of distress i was in. S#$%@ and i had planned a recreational outing for us that day, and her taking his car ruined that, and her response was to “Ya” me to death over it, making blatant FUN of me!
At Christmas, S#$%@ got in another dark mood when we got to his house for another family dinner—which completely ruined my Christmas this year. He took control of the Fire stick TV remote and began watching a bunch of really dark negative stuff that i hated watching. He wouldn’t let me watch anything i wanted to watch. I sat there clearly uncomfortable, getting agitated. He also was not that attentive to my needs when we first got there. He never got up from the couch to get me any refreshments at all. He did serve my dinner plate though. Then after dinner, he began playing a Bible thumper on YouTube who prays for people in a very harsh judegmental manner, his voice a sinister gravely monotone that i find to be more demonic than anything, and this really triggered me. He played it even though he knew this man upset me when i had to hear him before, out in the middle room of my house. When i tearfully asked that he please turn it off, he refused, getting downright nasty with me. I had a meltdown, and had to leave the room. His mom came to my defense, and he finally got nice again, apologizing to me….letting me have the remote. I put on videos of New York City.

And then in January, he actually left me at a mental health counseling appointment, leaving me to believe i would be stranded there. He basically came in with me, then excused himself to go take a phone call, promising me he would be right back in, then never came back. After my session was over, my counselor and i tried to reach both him and his sister, but both their phones went straight to voice mail. I had the counselor then call his mom, and then my kidney center social worker, who has been in my corner from the get-go, and she finally reached the sister, who got S#$%@ to finally come get me. When he finally did come to pick me up, the center was getting ready to close, and instead of him apologizing to me for leaving me stranded, he yelled at me and scolded me, telling me “It’s always about you, Melissa, always about you, you are so selfish!” and i had another meltdown. He finally apologized, realizing what he had done.
Things have only gotten worse since then….unbearably worse…..with both of them….more numerous daily episodes of their now classic showing up late behavior, the now classic phones going straight to voice mail when i try to reach them to find out when they’re coming…then suddenly they come back to life and message me to say they’re down street, at the stoplight, on our way, etc.,…me often getting my breakfast a whole hour to two hours late…..daily episodes of them switching days on me, and switching plans and changing things abruptly,…daily, upon daily, repeated episodes upon daily repeated episodes of me being in here, in my living room, all alone after they give me breakfast, all alone for whole entire afternoons, with them out in the room with their friends coming and going into the room to visit them all afternoon long, and me—just alone. If i needed them, i would have to get up and literally walk to the back of my house to yell for them. On legs, hips, and knees that always hurt. (And i still have the leg lump). Otherwise they would not hear me call for them, as they always had music or videos playing. I would have to call for them at the top of the steps leading from my laundry room through a breezeway, to that room that they had turned into an office/hangout/party room for themselves. Often they would even block the door leading into their room so that i could not go in there to hang out with them, which i often had to do in order to get any attention from them, again on knees, legs, and hips and a heavy leg lump that always hurt…..
Sometimes they would take their time to come to me. One time, they would not come, and i kept going back there, over and over again. pleading with them to please pay attention to me, and they would not come to me until after i was screaming and in tears.
There were the afternoons the sister would bring me treats like ice cream pops, and cool candy, even hits of her cbd pens. But most afternoons i was here in my living room all alone with no one to talk to.
And then in April, she began to also get in even more and more ugly bad moods and pay even less attention to me. She began yelling at me more and more. More and more scolding me. More and more judging me. She stopped thanking me for all of the nice things i did for her. She just stopped being nice. Then in May, a week before my birthday, one morning, she and her brother both came really late, together, with him laying on their car horn as they flew into my driveway,—– on a dialysis day,—– with me in here at my computer, in full on screaming meltdown mode on the phone with my kidney center social worker, and they both lay straight into me, them both yelling right at me, charging into my living room, calling me ridiculous, with even him going so far as to actually pick my desk phone up and hang up on the call i was on with my kidney center social worker—-who was on the phone with me, trying to calm me down. I kept screaming, and they only reacted by threatening to leave me, with no breakfast, and no way for me to get to dialysis.
He calmed down, and fixed my breakfast, but, yeah, got me—late—to dialysis, where, because i was still highly riled up, my dialysis machine kept alarming, and they had to put Acti-vase in my catheter to get it to work. In addition that day, my blood pressure was at literal stroke level.
That evening, after i had another meltdown because of the way my spaghetti was plated up with way overkill on melted cheese on the top of it, at first, S#$%@ was going to fix it, but then his sister came in, and they both yelled at me yet again with their usual harsh ableistic judgments: “Oh, here you are, Melissa being ungrateful, using your autism as an excuse, you are selfish this, bad that, a burden, a behavior, a tantrum, you don’t appreciate us and what all we do for you, and we even think you are lying about your disabilities….” Then they both left. In total and complete frustration, i threw the entire dinner on the floor, because as usual i was being unheard, as usual i had no say in my care, no rights, it was their way or the highway, as usual….and i just could not do this anymore…..i tried to run away…..and came back later, having to heat canned raviolis up in the microwave…..
It got better with S#$%@ after that, in fact, unusually better with him, because i had Connie come talk to him….and it calmed him down and he even told both my friend Connie and i he now gets me and that these upsets are not going to happen anymore. After that, he even had talks with my kidney center social worker that gave her hope too—but even when the sister and i made up a week later after that awful day and night, things were never the same between her and i…..
Because of that night, i had Connie come in as a third caregiver, thinking that would help….it did until S#$%@ realized he would lose money by me having Connie as a secondary caregiver, plus Connie came right out and called him out on the way i’ve been treated by him and sister these past 9 month…..and then more hell happened on Father’s Day with the sister and the sister’s mean friend, when S#$%@ took me to his house for a Father’s Day BBQ. When the mean friend of the sister’s told me to stop the stimming i was doing, sister came in yelling at me for standing up for myself to her mean witch friend…..and now? He has finally turned on me…..
I have both of these ex caregivers now blocked, as well as their just as cruel wicked witch of the West den mother, as well as HIS evil girlfriend and partner in crime.
The reason i am writing so passionately this morning, is because i am rage pissed, deeply hurting mentally, and i do not feel well physically either this morning, i am still having lower abdominal cramping, still feel physically sick.
I am CRUSHED that this young man has done this to me, left me when i, a borderline Type 2 diabetic, needed my breakfast, and to get to a vital medical treatment that is keeping me alive.
S#$%@ and his sister, when they were my caregivers, would routinely play games with me when i would get upset at them, cruel mental games, were always late getting to me, they always yelled and screamed at me, and several times before he finally did leave me on Saturday, threatened to leave me without food and a way to get to dialysis. Yes, there were several other times where i was threatened with no breakfast and no way to get to dialysis.
They both knew that i am all alone, with no family support. They preyed on all of my fears and vulnerabilities. All the while telling me over and over and over again how much they loved me.
On Saturday, S#$%@ finally made good on their threat to leave me hungry and without my dialysis.
ALL of this is well-documented by my social worker at my kidney center, by my local hospital where i had to go to try to get dialysis there on Saturday after S#$%@ left me, and by the local police, after the kind hospital social worker who saw me while i was at the ER, told me i needed to make a police report on what S#$%@ did to me.
I have not gotten a dialysis treatment since Thursday. They were going to admit me Saturday so that i could get dialyzed, but they did labs and decided against it because those labs came back normal. I am going to go back in this morning to get more labs done, to make sure i can wait till tomorrow my normal time to get dialyzed. If not, i will have to get dialyzed today.
Again, this post needs to go viral, to illustrate that caregiver abuse of vulnerable disabled folx, is a real and pervasive and serious evil occurance that needs to be stopped.
Abusive caregivers need to be placed on a national registry, just as sex offenders are, and need to be banned from ever caring for and abusing anymore of us.
As for me, this is why i have the deep trust issues i have. Exactly why. Exactly why i now have the C-PTSD i now have. Because sadly, i have had a long string of these kind of abusive caregivers, from 2012 on when i first needed caregivers.
I know this was long. It needed to be. Because these stories need to be told. Shouted from the rooftops.
Caregiver abuse is a REAL and SERIOUS problem. And it needs to be stopped full stop. No more. We disableds are human beings. And we matter.
Thank you.
[Above blog is a more detailed account of what i have had to endure for over nine months, in my own home. If you read my Timeline post, please read this, and share it widely.]
Update on Thursday June 27, 2019: I did go in for dialysis for a three hour run Monday, which was successful. On Tuesday, i tried to do my regular four hour treatment, but my catheter would not pull. I was only able to get one hour and forty five minutes of my Tuesday treatment, and no dialysis today. Instead, i am going into the cath lab to have yet another new catheter put in my chest, so i can hopefully get back on schedule with my dialysis again.
Connie is once again my caregiver.
In addition, S#$%@ has moved all of his computers and personal things out of the middle room. He told me he would have everything out by this past Sunday at noon, but as of Wednesday, he still had desks, two sofas (he took the cushions from them though), two vinyl chairs (of which he also took the seats from), a red Coca Cola refrigerator, and my desk, with many of its drawers also missing and gone. In addition, i had three folding chairs that are mine that he also stole from me.
I also asked for him to return an art portfolio full of felt tip marker drawing i spent hours upon hour drawing in the 80’s and 90’s, that he still has, at his house, and has yet to give back to me.
Between him and his sister, much of my possessions are i am afraid, forever gone. My emotions are forever ripped apart by those two.
I trusted them to care, to love me and to really care, and i instead got my entire being forever broken.

When You Fail To Understand

When you fail to understand that my Autism does
very much define me
When you do a something without realizing it can be a trigger for me
When you do things without asking me first
Change things on me without my consent
Or change my things around without asking me first
When you yell at me, scold me,
talk over me and then assume and judge me wrongly
then leave it all unresolved for me
No closure, just walk out on me
I am up all night crying
thinking the worst
and wanting to literally run away from my own home
At the same time i am begging for God to take me
I am not the monster you think i am
I do not act and react to manipulate and control other people
I have alot of sensory issues, many are inherent to my autism
But many are and have been brought on by a lifetime of trauma after trauma
I act and react because i am triggered
because my brain is wired differently than yours
Please, for the love of God, understand that
When upset and in distress, i am going to write about it
To educate you and others
And to help me to process through my time of upset and distress
It is NOT to slam anyone personally
It is not just because i want to hate
and put that someone or
someones on blast
I just have to write
Because i need to be heard
I need the world and those i care so deeply about
that still seems hell bent on misunderstanding me and making
us autistics out
to be the villains we know we are not,
then silencing and trying to fix, cure and erase us
To hear my words that come from my very heart and soul
THAT, my friends, is why i write
The things i am not
I am not just a “negative person”
I do not hate myself
I am the way i am due to a lifetime
of my autism being misunderstood and judged way too harshly
And me being rejected by others over
and over and over again because of my autism
I am not ungrateful
I am not selfish
I am not rude
I am not bad
I am not a terrible horrible awful this and that
I AM AUTISTIC AND I AM DOING THE UTMOST BEST THAT I CAN
WITH THE LIMITED TOOLS I HAVE IN MY TOOLBOX.

An Open Letter From A Friend

The following is from an anonymous friend who wrote this in response to some struggles i’ve been having for awhile now. I am posting this here, for educational purposes only, to help readers gain knowledge and understanding of what being a real friend, support person, etc., to an autistic person is….how to really be here for us, how to show UP for us, how to really have our backs.

I hope this will help any of you reading this who also struggles with friendships, and maintaining friendships because a non-autistic friend does not understand. I still to this day struggle in my relationships with all people, both autistic and non-autistic, because of so many sensory issues and a lifetime of trauma i sadly, have yet to heal from.

It doesn’t make us bad people. It’s because so many people today still don’t get it that autism and autistic people are not a behavior issue to be scolded and fixed and cured. Autism is a real and valid disability.

I urge you to read this in a quiet room, with your entire attention, and then pass this on widely, because on behalf of myself, an Autistic adult, all of my fellow autistic friends, and all autistics in this world, it is time for the non-autistic world to stop seeing us as the tragedies and burdens and monsters that we are not.

Hey *******,

I am an anonymous friend of Melissa’s and wanted to reach out to talk to you. She says that you are wanting to learn more about autism and how to support an autistic person like Melissa.

Like Melissa, I am also autistic and I think I can help you to understand a little bit more if you are willing to listen.

First, I’d like to say that as her friend, it’s really important to listen to Melissa even if you don’t understand why she might have certain reactions or responses. The reason for the way an autistic person is acting is not something that can be easily explained to people who do not experience the world like we do. So, when an autistic person is reacting or behaving differently than you would, remember that’s because you are not experiencing the same things in the same way as we are. I will talk a little more about this but just wanted to say first that there might be times when you will never understand why Melissa wants things a certain way or does things a certain way, but that doesn’t really matter because she still gets the final say in her life and in her home. Melissa did say that you wanted to learn more and thinks that you are a person who really wants to help support her in a respectful way, and she wanted to try to help you understand her better. To me, that says that she thinks highly of you to devote the energy and time into helping you to understand, so I want to help her make that happen!

Autistic people experience the world differently in many ways. The primary ways that we are different from non autistic people are in the areas of communication, sensory processing and movement.

Communication:

In general, autistic people like Melissa and I might struggle a lot with what is called expressive language. Even autistics who talk a lot tend to have a hard time with identifying and expressing emotions. This is called alexithymia. It means that some emotions are hard for us to name when we are having them and there is a disconnect between the things we are feeling and how it affects our bodies and sometimes how that looks to other people. It makes it very hard to tell other people what we are feeling when we can’t figure it out ourselves. But this is not a person being difficult or manipulative just to upset you, this is how our brains are wired. Some ways that you might see this when interacting with Melissa is when she might seem to get mad out of nowhere. Well, it’s not out of nowhere. I am often accused of doing this when in reality there are a million little things that have been upsetting or distressing me and I don’t realize and name it in real time and can’t express it to people around me. Autistic people also tend to be very blunt and communicate in facts. Some people see this as rude, but to an autistic person, not saying what you mean is pretty rude too. For example, I don’t think Melissa would ever bullshit anyone and pretend something did not bother her when it did. This is something that non-autistic people do and it’s baffling. So, as you can see, the way you communicate as a non-autistic person can be just as confusing to us as our ways of communicating are to you.

Alexithymia combined with the sensory regulation issues that all autistic people experience can be quite upsetting and overwhelming. It’s important to note that what you are seeing and experiencing when an autistic person is struggling in this way is not even a fraction of what they are feeling internally.

As Melissa’s friend of many years I know that she sometimes uses images she creates on her computer, writing or even pictures she shares on Facebook to express how she is feeling sometimes. This is something that a lot of autistic people find easier than talking. So, Melissa communicates just fine in autistic ways, but what she needs from the non-autistic people around her is to know that there will sometimes be conflicts in communication since we have such different styles and ways of expressing things than non-autistic people. The key is to respect each other’s way of communicating and interacting with each other.

Sensory Processing

Autistic people all process sensory input in vastly different ways than non-autistic people do. Some people are sensory defensive and some are sensory seeking. Some are both at the same time! I know that Melissa has a terrible time with the loud noises from the cars in her neighborhood. What might seem like an annoying sound to you is PAIN to her ears, and probably would be to mine too. Melissa can probably explain better what her particular sensory issues are, because not all autistic people are the same in that way. A lot of times, there is nothing that can be done about the sensory things that hurt us. Because a lot of that is up to other people….like the car shop people, who are clearly not interested in that kind of thing. So, that is something that Melissa has to deal with on an almost daily basis and causes her intense and overwhelming pain. Sometimes, we can make workarounds and accommodations like earplugs or headphones….but sometimes those create a whole other sensory hell for us too. I know that I can’t wear earplugs but I also can’t handle lots of noise. So, it can be a very hostile world to navigate at times.

So, it’s important to understand that our experiences are probably 100% different from anything you have ever known, but that doesn’t make them less true or valid. Sometimes, when I am overwhelmed from too much sensory input I am told that I am “rude”. I don’t mean to be, and I do not want to hurt anyone’s feelings but in that moment, I am trying to lessen the pain I am feeling. So, when Melissa is overwhelmed from sensory issues this might cause a meltdown….and if you knew how much sensory pain she experienced daily that she DID NOT react to, you’d know why meltdowns happen. It’s usually the last straw when we melt down. We are not trying to be rude or cause a scene, but we are in pain and we are trying the best that we can in a world that is really pretty shitty to autistic brains.

Imagine that I accidentally dropped a giant log on your foot and at the same time you were unable for whatever reason to tell me and I didn’t notice. Then I ignored the gestures and other ways you tried to communicate that to me. Not intentionally, but I just didn’t understand. You are dealing with this log, unable to move past it and it’s causing you so much pain that you eventually start to scream at me to get the damn log off your foot. I wasn’t TRYING to cause you pain, it was all an accident. And I wasn’t TRYING to ignore your pleas, I just didn’t realize or know any better. And when you finally screamed or had enough, I just get offended that you reacted to the pain. This is how it feels to be scolded for having a meltdown…..A meltdown is a bit like that…..it’s a reaction….it’s not an intentional act to upset another person.

And I get that it can be scary for a non-autistic person. It’s scary for us when it happens to us too!

When an autistic person melts down, the best thing you can do is to not put any more demands on the person. Don’t ask a bunch of questions or yell at us, scold us or tell us what to do. The best thing you can do is just be there, without judgment and to not hold it against us in the future. Meltdowns sometimes help us process things when we are at our limit….but they are not fun, they are embarrassing and we don’t enjoy them.

Perhaps a good idea is to sit down with Melissa when she’s not upset or having a meltdown (or if she wants help, I can help her over the internet too!) and come up with a plan for what to do when this happens. I have a plan, my autistic loved one has a plan and they are helpful a lot of the time! The autistic person needs to be in charge of what happens and what the plan entails though.

Movement

Movement involves things like stimming and how we use our bodies to navigate the world. Most people stim. Autistic people do it in ways that might look a little more obvious to the outside world. It also involves the need for a LOT more downtime than most people realize.

In addition to all that, I know that Melissa has experienced trauma and as someone who understands and gets complex post traumatic stress syndrome (CPTSD), I know how disabling trauma can be. Unfortunately, most autistic people are familiar with trauma. It’s not a part of being autistic as much as it’s a part of how people treat you for being different.

One thing you have to understand about trauma is that it causes incredible anxiety. This can be seen in things like a need for routine and schedules, wanting things to be a certain way, not liking to have to deal with changes or spontaneous shifts in our routine, the need to control our environments and things around us. The trauma of repeated sensory overwhelm makes most autistic people need to have things very rigid and controlled because we don’t want to have to experience sensory overwhelm and meltdowns all the time.

Melissa has experienced a lot of emotional trauma as well, and this also results in a lot of anxiety and the need for reassurance. This is something people can work on together….for example, I will ask the same question over and over again to make sure and it makes my non autistic loved one/friend irritated. So, we have a plan that I can ask four times and that’s it and if the answer changes after the four times for any reason, this person will tell me immediately. Then I know that the answer is the same without having to keep asking because they have not told me differently yet. I know that might sound strange to others….but it has helped to have that plan in place so much. But CPTSD will manifest in many ways and it changes a lot, so that is something that Melissa deals with as well. It’s a thing we need to work on, but it also is a thing that requires understanding from the people around us and it means that building trust in relationships is even more important for people like us.

I know this is a lot, and I have a hard time getting to the point, sorry. But Melissa is very dear to me and I love her a lot. I want her to find the kind of support that she deserves and to be happy and to feel safe and secure in her home and community. That is what we all deserve. Please feel free to ask me any questions even if it takes me a minute to get back to you because I don’t have messenger on my phone. You can also text me at any time.  and I will try to help as best as I can from far away.

Thank you to my dear friend for writing this up for me.

My Latest Medical Hell In The ER

TW/CW: Discussion of medical symptoms, bodily fluids, and ableism, violation of bodily autonomy, disrespect of my humanity.
In my lat blog post, i wrote about a recent scare i had when too much fluid was once again taken off of me at dialysis this past Tuesday. I got so afraid, because i could not eat or drink a thing, a huge painful gas bubble was in my upper abdominal cavity, and my urine was a dark brown color. I was also having slight dizzy spells.
I had my caregiver, Sam, take me to the hospital, to the ER, that evening.
This blog is about the ableism that occured, mainly from the first doctor and the two ER nurses i dealt with while there.
For one, i was greeted with a triage nurse who was not rude, but who wasn’t that friendly either. He took my history, my symptoms, and vitals, and let me know what all my vitals were, except for when he told me my temperature, he said it in metric form, and would not let me know what my temp was in Fahrenheit form. Then a registration person (female-presenting) took my info as well. They were friendly.
When Sam and i went back to the ER area, that was one hot mix of both bad and good. We waited like 35 minutes to be taken back to the ER room.
My first nurse was nice enough. Until later. (More on her in a bit!) But firstly i was put in an ER cubicle that was shared, not one of their many private ER rooms. And there was a woman in the first bed, along with a male presenting person who was standing and holding a 3 year old boy, who was running right into my area, and then crying so loud i could not hear my nurse or doctor. Okay, disclaimer, i love children, but the loud noise of the little boy’s crying was triggering me, as i was already a ball of anxiety and nerves, and i had to leave and get placed into another non-private ER room with two beds.
Okay, while i was still in the first ER room with the crying boy, a doctor, Dr. J., came right in, and upon haring my symptoms, he, without first asking me, reached over, grabbed my t-shirt, pulled it up, and began feeling my entire abdominal area. Then an unneccesary argument ensued when they wanted to put a catheter in me to check my urine, instead of the toilet hat they use for us fat folks that cannot do a conventional urine sample (pee in the cup). I refused the catheter, and they consented to the toilet hat.
I had Sam wheel me into the restroom, but we were unable to get the hospital wheelchair in to the restroom, so, the nurse proceeded, without warning, to lift up my legs, roughly, again, without first asking me, to move the wheelchair’s leg rests off to the side, so i could get out ad walk into the restroom. I reacted instantly by snapping at her to ask me first before just touching me. And let her know she was hurting my legs. I let her know i had lymphedema, and that her roughness could cause leg ulcers to break out on my calves where she was lifting them up.
She was not that friendly either. And she talked too loudly, so that everyone else in that whole area could hear what was going on. Isn’t that a violation of the new HIPPAH laws?
The following are copied and pasted from an actual survey i got in my email this morning from that hospital. Re-edited for clarity.
I dealt with a total of two ER nurses that night…St., and Ch.
Both nurses I dealt with were mostly condescending, and when i explained I am autistic and have certain ways I need for things to be, sensory issues, etc., (my accomodations for my disability of autism) they were both dismissive, and instead were quick to defend the rude nurses I had in a previous stay, over my valid complaints. I felt unheard, and talked down to.
In addition, when my first nurse, St, took me to the restroom, she handled my legs roughly, and without first asking me when helping me to get from the wheelchair to the bathroom.
ALL of ANY hospital’s staff needs to ask us first whenever they need to touch and move us. I believe in treating patients with utter respect and courtesy, and this means respecting our bodily autonomy. ALWAYS, ALWAYS, ALWAYS, ASK FIRST! And if we go to tell you things, do not dismiss us, and defend your staff over the feedback we give on them. That too, is dismissive.
I saw two doctors while there in their ER. The first one Dr. J, came right up and pulled the front of my t-shirt up without first asking me, to check (feel around) my abdominal area. This was invasive and a disrespect of me. While I realize he needed to check my abdominal area, he still needed to ask me first. Again, the entire ER staff need to learn to ask patients first, before you touch us. It shows respect and care for us as the human beings we are.
My second doctor, Dr. Sh, showed respect and was kind to me.

The lady dressed in a bright red pantsuit who came to draw blood for my labs was friendly and respectful.

The male-presenting individual who came to do an abdominal ultrasound, was also friendly and cool, and showed me respect.

However, I was only given partial information about my possible condition, and no one has since bothered to follow up with me from your hospital as to the FULL RESULTS of all blood tests, or the ultrasound I had while in your ER.
I was quite impressed with the courtesy and respect that both ultrasound person and person who came to draw my blood showed to me. They even asked me if i wanted the overhead lights kept off, to which i said yes, because bright overhead floursecent lights bother me greatly.

However, none of them would barely talk to, or acknowledge my caregiver and friend, Sam.

The reason I marked very poor for privacy is that I was put in two non-private ER rooms.

I was never visited by a hospital leader.
In addition, both of my nurses, which again, were St and Ch, never bothered to give me the TV Remote/Call Button, until I finally asked for it, and was given it only after I had asked for it, a full two hours after I came to the ER.

I was never offered water to drink, or a blanket, or asked if I wanted the room temperature lowered or raised. I was cold the entire time I was there.
In addition, when nurse Ch came in with Dr. Sh and a second Doctor, nurse Ch reached over and shut my entire TV OFF—–AGAIN, WITHOUT ASKING ME FIRST IF IT WAS OKAY IF THEY COULD HAVE THE TV MUTED so that we could talk. I would have been more than happy to mute the TV myself. It would have shown respect again, for my autonomy and me, as a human being whose feelings mattered to them.
Considering the overall manner I was treated by staff when i visited your ER on April 3, 2019, no, I would not recommend this ER to anyone.

I felt most unwelcomed there, like most of your ER staff that was on that night, just did not care.
—-
In closing, i am writing this, because my local hospital needs to train their staff to do all they can to make each and every visitor feel welcome in that hospital campus. The entire medical field needs to change and realize we who come seek medical help, are human, our bodies our ours, and they need to listen, hear us, and be patient and kind to us. Don’t manhandle our mobility equipment, don’t talk loudly so the whole facility can hear, and give us the choice of whether we are okay with being in a non-private ER room or not. I will wait for the private ER room, because our local hospital has a majority of their ER rooms as private.
It was strongly recommended that i be admitted that evening. But i refused, because of how i was being treated in their ER that evening.
P. S.~~~As for my condition, i recovered the next day. I could once again eat and drink, and my urine has been clear since then too. So it was dialysis related, them taking too much fluid off of me, that caused me to get sick.