My Health, And My Words

I, an Autistic adult, turned 55 years old in May.
My physical health is not good anymore.
My legs are still swollen; i still have the awful
huge lymphedema tumor on my left inner thigh.
And it is getting bigger.
I also weigh 350 pounds now.
I went through alot of heavy things beginning in March of 2012.
In that month, my next door neighbor, and friend
who i had had many problems with during the course
of our six year friendship before our final falling-out,
suddenly turned against me for no reason at all.
He said it was because he was not going to run my errands
when i didn’t feel well anymore.
But i knew it was deeper than that.
He actually couldn’t stand me anymore.
And his hostility and hate really cut through me. I could feel his hate for me through every fiber of my being.
So i knew he hated me.
All of the other times we would have our fallings-out,
We would always mend our rift and things would be
good again for the next two to three or so months.
But this falling-out was radically different…..and……
…….this one was worse and darker than all of the others.
He got very mean, and began doing some of the
things he knew were triggers and sensory issues to me……
The loud golden oldies music that
made me relive my painful childhood,
his loud TV turned up loud, and his suddenly loud banshee yelling,
followed by several ugly emails where he slammed me and said i was
essentially a worthless piece of dirt who was lazy and
who had zero value.
He even threatened to call the police on me if he heard my music or any of my meltdowns.
He also went to all of the businesses where i was having problems with employees and their friends who were bullying me (and still are)
to let them all know i was making videos.
I suddenly began getting alot of hate comments on those videos
and even had to take some of them down
as he himself would flag them and threaten me
even though i needed to tell my story
He was done with me. Done.
I have deep PTSD and trust issues from childhood because so many people don’t understand Autism, and we get mistreated, misjudged, attacked, accused of, called tragedies and burdens, and essentially thrown away in the trash.

My mom could not talk to my friend this time. No one could.
His mind was made up.
My whole world collapsed around me, and i suddenly became afraid to step foot out of my house or drive anymore.
I began to have horrible frightening nightmares about him,
and night terrors.
I cried alot. I went into very deep dark depressions.
I began to fear i was going to die and go to hell like he
had told me i was headed to, in one of his awful emails.
My leg tumor which had developed a year before, got bigger,
and my legs swelled even more
He moved out that April, and on his last day here,
he stood outside and glared at me before leaving.
Thankfully, i had finally found a nice caregiver to take over and help me.
She helped me with my housecleaning, cooking, dressing, bathing, showering, all of it.
I sold my little white ’95 Toyota Tercel 2 door coupe that summer.
I have not driven since April of 2012.
I lost the ability to handle driving.
And then my caregiver turned very moody and mean, and i suffered another huge mental blow, so bad, i ended up chopping off all of my beloved dark red hair.
It has grown back again, but i still go through spells of frustration where i want to chop it all off again.

Since then, i have been through several very abusive caregivers
who would grill me about my meltdowns, demand lots of money from me for gas, and other mean things—-some of them would really yell at me
and i also went through more friendships that never lasted.

Today i finally have a kind compassionate caregiver who
Has become a real true friend and ally to me.
But when she is not here, i am all alone and lonely, sleeping all of the time now, and
i now feel dizzy alot, and just…..just…..really tired.

I come from a large family, but only have acceptance and love from my mom and two of my three sisters.
I call my mom every single day, and sometimes more than once a day if i am in alot of distress.
I have absolutely no contact or relationship with my three brothers, my other sister, nor any of my nieces and nephews. In fact….the one sister and one of my sisters-in-laws has me blocked so i cannot contact either of them.

I am writing this because to be honest, i feel like i am going to die soon.
And i want you all to know a few things……God puts us all on this earth, and we are all different…..
Some of us are disabled and require more care, patience and understanding.
But that does not make us bad or wrong….or less-than.
If any of you have a sibling, relative, or friend who is disabled…..
we cannot always be fixed or cured.
That does not give you any right to abuse us, and give up on is, and do it in a way that is mean and demeaning to us.
It does not give you a pass to ignore us and pretend we don’t exist. Or to financially, mentally, and physically abuse us. Or to gaslight us.

We are human beings…..and we deserve to be loved, accepted and included and to be a a part of our communities.

Please read my words and take this to heart. I honestly don’t know the course my health is going to take……all i know is that i feel as though if
i had my family
if had a group of local friends who would come visit me
take me places….to the ocean, to the nearby cool towns we have around here…..and even to any evening services at a cool laid back church where i would be truly accepted…….i may stop feeling so tired and like i’m going to die.
Please know
I say these words as truth!!
When people are alone and lonely
they lose hope……and the ability to dream and to go on.
Please don’t ignore us. Let us be who we are, and just be our friends.
And don’t give up on us.

My November Appeal

I didn't get up until after 5 PM this late afternoon. I managed to sleep ALL day long today. I got to see the rain start, but i slept through all of this morning's rainstorm. And then through all of this afternoon's clearing. Because.....i have no one to visit me on Sundays, and no one to come and take me places so i can get out of this house. Connie wants very much to be able to take me places, and she would, but her car needs some repairs, and she is unable to get those repairs done now. In the meantime, i do have a few local people on my friends list who i know read these posts who could find at least a couple of hours a month to come visit me, and maybe take me to the movies at the mall. Or once in awhile take me to see the nearby ocean. I am getting lonelier and lonelier, and cut off from the outside world, and yes, being lonely and cut off from the outside world does affect a person's physical health. It shortens our lives. If only i could even make some friends from the LA area, friends who are Autistic friendly, who would be willing to come once in awhile, like Penny used to do from Bakersfield, until my ex-high school friend/ex-caregiver, S., caused HER to turn against me. When i had Penny, i did get to go up to San Simeon, Cambria, and Morro Bay. Then Pismo, Avila, and the Avila Pier just before the Pierside Cafe closed. I don't know how much longer i can go on like this. My own brother who still lives here won't have anything to do with me either.
The good news though? Is that this year, Connie is bringing me a full Thanksgiving dinner of dark meat turkey, ham, stuffing, mashed potatoes and gravy, rolls, string bean casserole, and dessert.....which includes pumpkin pie. :) I am looking forward to that with all of my being!! :) I just wish i had a group of local friends who would come by, bring me a chocolate mocha from Starbucks, and visit, or take me up to the coast for a day out. I don't understand why this town is so against me. I am not a monster. I am not a bad person. I am Autistic, and i am hurting from deep down inside because most people blatantly ignore me.

I Am 55 Now….What Is There Left For Me?

I did not win last night’s Powerball lottery either.
When you are poor, 55 years old, have never worked, and have lived trapped unable to escape a bad neighborhood with bullies for the past 24 years,
When you are Autistic and no one understands you except your long-distance friends who do get you, your mom, two nice sisters, and your caregiver,
but the whole entire rest of your family all ignore you and hate you for telling your story online, instead of seeing why i had to tell my story
and there are no resources, no help available, yes, some of us dream and hope for things like the lottery to be our way out of our trap.

I am so lonely i hurt inside and out.
I am so depressed i feel like there is no light at the end of my tunnel.
I keep on losing friends because either they can’t take the intensity of my situation, or they just get pissy and mean.
I still don’t get to go places because of my legs, and because i still don’t have the mobility equipment i need, and ramps so i can get in and out, and i had to stop driving in 2012.
I have actually become frightened of going anywhere alone, and must have someone with me everywhere i do go now.

I so love it when my caregiver comes each day, as she and i do alot of talking and laughing. If she had a newer car that didn’t need repairs, she would take me to the coast.
But when she isn’t here, i have no one to talk to, hang out with, visit with, so i go on Facebook.
I do also talk to my mom every day, and sometimes one of my nice sisters.
But lately, my depression has gotten so deep i am left with no spoons most of the time….no spoons, no energy, and no strength.
With the huge leg tumor on the inside of my left thigh that goes from my groin to below my left knee….things such as hopping in the shower, even with help, has become so tiring….and it hurts me to stand long enough to even pop food in my microwave now…..it hurts from my whole lower back, down both legs and feet.
It has also become difficult for me to get in and out of any vehicle, except for a regular four door passenger car. Even that takes me having to get creative as to how i get in and out due to this lump.
Here i am at age 55.
All i have is a lifetime of this same kind of loneliness and isolation.

Back when the leg lump was smaller, i would beg and beg my doctor and the people at the lymphedema clinic to help me, and they refused……so this lump just got bigger and bigger and bigger…..and i fear that someday i will need to be put in a nursing home where i will then lose what freedom i have left, altogether.

I wish to God, someone would see my story and help me before it’s too late.

What Keeps Me Going

The fact that i can come to my computer anytime of the day and night, and i have supportive friends.

The fact that i have a TV to watch, and can also watch anything i want to watch via YouTube too, online.

The fact that i, as an Autistic adult, now have a real forum to tell my story and post blogs and vlogs.

The weather cooling down yesterday.

My caregiver and friend, Connie.

Facebook and all of you.

My mom and my two nice sisters.

The understanding i have garnered of Autism and Autistic Acceptance through Facebook and the internet.

Again, all of my awesome Autistic/Disabled Community friends.

The fact that it is now officially Autumn.

Getting to go someplace scenic once in awhile.

My Slurpees.

The beautiful sunrises and sunsets when they happen.

Beautiful and unique clouds.

Beautiful scenery....especially seeing pictures of Michigan, The Great Lakes,

New England, New York, NYC, Canada, the Aurora Borealis, the Midnight Sun.

and the Fall Foliage.

Having the hope that i will win the lottery so that i can

finally move away from the mean bullies and their loud bass and hot rod noises,

and get my leg surgery done, so i can have my left leg back.

Hope...always that light of hope that someday it all will get better.

To all of you who suffer because you can't get out and do 

the things you want.....please know, you are not alone.

But as long as we have hope and each other, and people who believe in us

it will always get better.

So keep hoping and dreaming and believing.....and know.....

you are not alone, because we have each other.

And miracles can and do happen.

I believe in a Higher Power and in rainbows and unicorns too.

I would love to wake up one day to see a tye-dyed sky outside.

I do believe that too, can happen.

But in the here and now, the cool thing is that we all have each other.

And that is what gets me through each day.

I love you, everyone. 

Thank you all for being in my life.

No, Donald Trump, You Are Wrong!!

The following is a transcript of the part of tonight’s debate, now that i have had a nap, and some of my spoons are back, in which Donald Trump, and other Republicans are continuing to blame Autism on vaccines.

This….needs to stop. It is this kind of talk and attitude which keeps us in a place of continuing to be misunderstood, misinterpreted, unheard, not listened to, muzzled, silenced, abused, discredited, stigmatized, Othered, thrown away, ignored, mocked, laughed at, exploited, denied quality medical care, denied quality services and supports. The way Trump, Paul, and others talked about us, was like we are all wrong and damaged goods.

Just no.

Autism has always been around. Autistic people have always been around.

I thank God for the internet and social media, because the internet and social media has given us our voice and platform to effectively get our stories out there. That, and better diagnostics are why we are more visible. And we are not tragedies and burdens. And we are not an epidemic.

We are human beings in need of being heard, listened to, and accepted, and included.

I have made this post, and transcript into a blog for my Facebook, WordPress, and Blogger blogs. Here is the transcript:

” Carson: There have been numerous studies and they have not demonstrated there’s any corelation between vaccinations and autism. This was something that was spread widely 15 or 20 years ago and it has not been adequately revealed to the public what is going on. Vaccines are very important – certain ones, the ones that would prevent death or crippling. There are others – there are multitudes of vaccines which probably do not fit into that category and there should be some discretion in those cases.

Trump: Autism has become an epidemic. 25 years ago, 35 years ago, you look at the statistics, not even close. It has gotten totally out of control. I am totally in favor of vaccines. But I want smaller doses over a longer period of time. … I am in favor of vaccines. Do them over a longer period of time. Same amount but just in little sections. And I think you are going to see a big impact on autism.

Carson: The fact of the matter is we have extremely well-documented proof that there is no autism associated with vaccinations. But it is true that we are probably be giving way too many in too short a period of time. And a lot of pediatricians now recognize that and are cutting down on the number and the proximity in which those are done and I think that’s appropriate.

Trump: That’s all I’m saying.

Paul: One of the greatest medical discoveries of all times were the vaccines particularly for smallpox … I’m all for vaccines, but I’m also for freedom. I’m also a little concerned about how they are bunched up. My kids had all of their vaccines and even if the science doesn’t say bunching them up is a problem, I ought to have the right to spread my vaccines out at the very least.

Huckabee: We need to remember that there are maybe some controversies about autism but there is no controversy about the things that are really driving the medical costs in this county. And I would really believe that the next president ought to declare a war on cancer, heart disease, diabetes, and Alzheimer’s, because those are the four things that are causing the greatest level of cost. … I grew up in the 50’s. I remember the polio vaccine. We saved billions of dollars since that time because we haven’t had to treat for polio. Why doesn’t this country focus on cures rather than treatment? Why don’t we put a definitive focus scientifically on finding the cure for cancer, for heart disease, for diabetes, and for alzheimer’s, a disease alone that will costs us 1.1 trillion by the year by 2050. “

They would all do well to read Steve Silberman's Book "Neurotribes". 

My Latest Medical Nightmare

The following is what happened to me yesterday, and is another perfect example of how not to treat an Autistic person. Ever. Ever. Ever.

Because we process, smell, experience, feel, touch, taste, see, and hear everything differently than you do. Because when you fail to respect and listen, it will cause us to meltdown and shut down and not be able to talk or deal with you.

In my case, today, i almost lost vital services that i need because of the physical therapist they sent to me. Because he was harsh, blunt, and unfriendly. And he would not listen to me.

Here is my earlier post from yesterday. And why i am now scared to be alone when dealing anymore without my caregiver or someone who understand and can come in and advocate when i lose my words.

Yesterday i not only lost my words….i did have a bad meltdown because of how the physical therapist treated me.

My post:

“Later on i will have a story to tell about just how insensitive medical staff can still be towards Autistic people.

I had my visit from the physical therapist today. Thankfully, Connie was sitting right here across from he and i, and witnessed the whole encounter between he and i. To make a long story short, he was brusque, unfriendly, and unwilling to really listen to me. In fact, he was unfriendly towards me right off the bat, putting his bag down right by my TV outlets, which set me off, because i do not like for anything to be placed up against my electrical outlets. So, i asked that he move them. Then he took it upon himself to sit down in my computer chair without first asking me.

He and Connie then left the room to go look at the heavy wheelchair i was given, and then my hospital bed.

Then when Connie and i proceeded to explain my needs for a Hoveround, and a new hospital bed that i can get in and out of easily, he interrupted, started to tell me he was going to have to get in touch with the place where i got my current hospital bed, which triggered me because that place was very unpleasant for me to deal with when i had to deal with them in July of 2012—-they were the ones who sold me a defective lift chair, and then came with a huge thick rock hard mattress for my hospital bed, which made it impossible for me to get in and out of that bed or to sleep in that bed, so i jumped into say i can’t deal with that place again because of how they were rude to me. Because he—the physical therapist who came yesterday, failed to communicate clearly to me and make it plain at the time that he was only going to be calling them to find out why i didn’t get a better mattress, so he could proceed from there. Had he of let me talk, and explain all of this, then after i talked, he would have explained that he was only going to be calling them to see what went on, so he could know how to proceed in how to help me—— i would have been okay——SO okay. But no. Instead, he began the now all too familiar and painful “Shutting-Of-The-Door-On-Melissa” routine.

His response was to tell me that if he couldn’t work with Best Care, there was nothing more he could do for me. I was already tense due to his unfriendliness, and when he closed the final door on me, i lost it and had a bad meltdown—–because——more ppl being dismissive and shutting the door on me for the help i need——is a huge NO. This is the same reason why i haven’t yet been able to get the leg surgery i am needing so i can walk again and drive a car again. Because of assdouche douchecanoe dickwads like him.

Because the cancer specialist i saw also disliked me and treated me brusquely.

I told Connie i was going to post about this, and she is okay with me doing so—–because this experience illustrates how we Autistics are still dismissed and muzzled and not allowed to be heard and listened to.

Shielding my face from his, because he had upset me so much that i didn’t want to look at him or feel his presence in my house anymore, i turned to Connie and asked for her to talk to him…and he continued to keep saying he can’t do anything….and so i began room spinning around me, more red-faced, more shaky and louder, hand-flapping, saying “No, no, no”, over and over, and so he left, and she followed him outside and talked to him there.

She said he made the comment:

“This is NOT Autism”,—-implying the this was something else—-but not Autism——

and she said “Oh really? What makes you so sure about that? Are you an MD? No. You are a Physical Therapist. And you are wrong.” She proceeded to explain she has worked for me a long time….that yes, i AM Autistic, and he is NOT qualified to make that diagnosis after only meeting me for five minutes.

Feeling remorse, he attempted to come back into apologize, but i was still in the thick of my meltdown, still very upset and angry—— so i said no, no, no, and “Furthermore, i do not want him to come back to my house—-ever!!”

When my nurse came, we told her what happened, and she is making a full report and getting me assigned to a female physical therapist who she is certain i will like.

I will be making this into a blog later on.

And i have. Please like and reblog and share this.

When I Say No, I Mean No!!

Early this morning my doorbell rang as i was organizing drawers in my bedroom. It was a caregiver who i had for three times off and on from late May 2013 to Feb. 28, 2014, a lady in her forties named JuJu….not her real name. During her times with me, she would talk down to me at times, insult me, slap my lotions and creams on me, tell me no, she was not going to do what i was asking her to do, and she would make me wait on my needs. In addition, she made me have to cancel several of my doctor’s appointments. The biggest thing though, was that she was always, always asking me to give her gas money for her car…..to the tune of $25 to $35 to sometimes $45 per week….i could ill afford to be giving her this money, and would try my best to tell her i can afford maybe $10-15 a week…..but she said no….. we would have to limit things if it was any lower than what she was demanding i give her. I was always broke because of her, and had to resort to paying only minimum payments on my credit cards, because she took so much money from me. I even had to go to the bank and get three cash advances off of those cards so i could afford to pay her for her car expenses she said she had because of my errands.

JuJu was one of a long string of very abusive caregivers that i had from March 2012 until i fired JuJu on February 28, 2014, and finally found Connie in March of 2014. Things got so bad while JuJu was my caregiver, that i was actually making serious plans to move to Michigan. But then shortly after i fired JuJu, and got Connie as my caregiver, the lady who i was going to live with in MI, suddenly turned mean….so my plans for a new start in MI were off.

I then had to suffer through two more bad caregivers when Connie and i took a one month break earlier this summer.

My wall post from Facebook tells the story of what happened this morning. I wrote it well after JuJu’s visit, after i had gotten done watching YouTube videos, which i watched to help get me to calm down.

“~~~I just got done watching YouTube. That has helped to calm me down some.
But yes, i am still very scared. M, the first temporary caregiver who i had when Connie was gone for that one month, and JuJu, KNOW one another. M also knows JuJu’s Apostolic Christian sister too. They are all friends with each other. How i know this? Because when M was working for me, she asked me about JuJu and Jess, and told me right out that they were all friends.

And now? Tonight? JuJu pulled up her big black pickup truck right into my driveway at 1:45 AM this morning, and rang my doorbell, because she wanted to come to visit me and see how i was doing. She looked disheveled, and was wearing dark pants and a thick black coat with gold buttons down the front. Yes, even though we are in the middle of a heatwave, and the outside temp was still 67 degrees at that hour of the morning, that was what she was wearing.
I opened my door, and she asked if i remembered her?
I said “Yes, what the f**k?” and then
“What the f**k are you doing here?”
She said “I just came to visit you and see how you are doing. I knew you would be up, so i thought it’d be okay to stop by.”
I was like “Ummmm, at THIS hour of the morning?”
She got nervous and said “Uhhh, maybe i should just go, maybe this wasn’t such a good idea.”
“No, it wasn’t,” i replied, “I meant it when i said i never want to see you again. You were mean to me.”
She was like “Okay, if you want to be that way,” and then kept yelling at me in a snotty tone of voice as she went back to her truck.
I told her that she needed to leave now, or i would be calling the police.
She did start her engine and leave.
I called the police anyway, and told the dispatcher everything about JuJu.
A nice officer came, and i told him everything. He said he is on all night tonight, and that he would patrol my street all night long.
Today is one day when i can hardly wait to see daybreak.
Yes, i am still scared shitless!!!~~~”

When i say no, i mean no!!! 

When i say i no longer want to see you, i mean that.

When i say i cannot afford something, i mean it.

When i say i don’t want to be talked down to, gaslighted, demeaned, treated as “less-than”—i mean that too!!

To JuJu…..M…..A…..CeCe…..KT…..Sh***y…..Jess……Little Jess……i am still processing through all of the emotional and mental hell you all put me through. Please don’t get angry because i need to write, vlog, and blog about it. I am writing about this not to slam and badmouth anyone, but because this is part of my story. And it is an important part of my story.

Because you all abused me physically, mentally, emotionally, and financially. You all abused me by also gaslighting me.

But above all……please…..do not call me, email me, seek me out, or come to my house anymore……when i say no, i mean no…..i never want to see or hear from any of you ever again…..because none of you understood me, none of you respected me, none of you realized that i am not a monster, that i am not a behavior problem……

NONE OF YOU REALIZED THAT I AM AUTISTIC!!!! AUTISM is a neurological developmental disability. No One can fix, cure or make me non-Autistic. This is who i am, and who i will be till the day i die. This doesn’t give you a pass to hurt, exploit, abuse, and discriminate against me in any way.

I will say it again…..DO NOT CALL ME, VISIT ME, EMAIL ME, OR CONTACT ME IN ANY WAY, SHAPE OR FORM. When i say no, i mean no.

Or i will be forced to take legal action. And i will.

To A, Who I Thought Was Going To Be A Sweet Friend To Me

DISCLAIMER: This blog is not being written to slam anyone. I am writing it for educational purposes and because it is MY STORY….MY LIFE. Everything that happens to me will be written about and vlogged about, because i am here to educate people as to how we Autistic adults still get treated today, in the second decade of the 2ist century. With respect to people’s privacy, and for legal purposes, i will use initials and even aliases to describe certain people. I will not be taking this blog down, however, because it is within my rights to tell this story. I do not lie. I may get overly emotional, but then i go back and correct that. This blog is based solely on true events. I am within my legal rights to write this. 

To A:

You became my friend the day my main caregiver walked out——which, by the way, only happened because she did not want me to feel afraid in my own home anymore——which only happened because she and i were both putting up walls of defense…..because we both did not understand each other during the time she was my caregiver for the first 15 months. My main caregiver is now back with me, and she has been back with me for a month now, and i know she cares about me and has my back with everything. She now does understand and gets me, because during her time away, she took the time to read over my blogs again, and to then watch several of my YouTube videos.

A, after you and i became Facebook friends, you also took the time to read my blogs and watch my YouTube videos. You also told me you already understood alot about Autism anyway, because you have a sibling who is Also Autistic. I loved the way you and i seemed to connect right off the bat, and loved getting to chat with you via Facebook. I was so looking forward to my new friendship with you.

When C left, i had a caregiver, M, who at first was nice. But right off the bat, she had to bring up to four to five large cans or bottles of beer to work in order to be able to get through her work better. M is a large lady, larger than i am, so i felt it would not be an issue……plus, i am so dependent on caregivers for my daily needs that i was afraid to tell her no, she couldn’t bring her beer to work.

M was rough with me though. When she would give me my showers, she would wipe my private area very hard, hurting me. Her fist bumps were hard. her hugs were hard. And of she was talking to her friends, which she did alot while on the job with me, she would make me wait in the shower,m and after the shower, to come help me.

She also began asking for my food, snacks, and candy all the time. Then asked twice, to take a nap in my bedroom. I had to say yes to all of that, or else face being left to fend for myself.

She promised me she and i were going to go places alot. That we were going to go to San Luis Obispo, Avila Beach, Pismo Beach, Solvang, Santa Barbara, the park, the movies, the fair, and even to LA to go watch Ellen DeGeneres. M did have a fun side to her, and we got along great for the first two weeks she was my replacement caregiver. We did even get to go see the movie “Ted 2” at the mall, and then we ate at Red Robin’s afterwards. Ummm, i did have to treat her to all of that though….the movie, the Slushees, the popcorn, and then dinner at Red Robin’s.

Then, the third week happened, and she suddenly had to take a nap, on the job….and did so twice. Then she had to start bringing her seven year old niece to work with her. Then she got her new car, and on the 3rd of July, as we drove down the street to go to do my payday day at my bank, she got angry at me, telling me snottily “Well, you didn’t have to come,” when i began to meltdown over all of the windows having to be full-on open, with the wind blowing so hard on my face it made my face actually move, and my hair blow into my face and eyes. When i came out and told her she was being mean, she backed down, and let us have the windows up. The car had air conditioning too…but she needed the windows to be down because they were tinted, and she didn’t want the Po-Po’s—-the cops—–to pull her over.

Also, that day, M asked to borrow $40 dollars from me for her gas for her car. That never got paid back to me, btw.

The other thing she had been talking to me about incessantly, was the nice 4th of July block party she was taking me to….and how much fun we were going to have there. It was going to be a special day and evening, where i would be able to stay past her time to clock off of work.

But the day of the party, she came to my house in a gruff brusque mood, told me to hurry up, something she knew would set me off, and it did. Then when we got in her car, she turned the radio on FULL-BLAST, causing me to cringe in my seat. I asked her to please turn it down. She did. But when we got to the party, she got me set up at a table, and then went off right away in search of beer for herself. I was left to introduce myself to the people around me, who were all VERY friendly to me, by the way, and they went out of their way to offer me food, iced tea, etc. One lady, Yesenia, was like a sweet angel to me. Right way, M got this mean look on her face and kept walking around my table talking to her teeny-bopper type friends, who were NOT friendly to me at all, btw, complaining LOUDLY…and REPEATEDLY……that she felt like she was babysitting a CHILD…so she wasn’t free to drink and get drunk…..and that i was just like a huge ball and chain around her ankle. I told Yesenia how hurt i was,…..Yesenia heard the whole thing too, and took M aside to talk to her, to tell her to let me stay, that she or someone else would take me home….she told her, “Mija, let her stay and enjoy the fireworks, this is what the 4th is all about. She has a right to be able to enjoy her night, just as much as you do.”

I loved Yesenia. I wanted Y to be another new friend to me, just like i thought you were going to be to me, A!!!

Then i went to pick up a chip, an the salsa spilled all over the front of me. Y was in another area, but M was sitting right next to me, and when i got upset, i felt she was going to get me napkins so i could clean it off of my shirt and purse. Yes, she did get up to go to the food tables…..but she didn’t come back for 25 minutes. I finally had to get one of M’s mean teeny-bopper friends to grab me a bunch of napkins…..and i was able to finally clean myself.

Finally, an even gruffer M came back with several pieces of bread and ribs for herself, watermelon, hot dogs, and she only let me have one piece of bread, a small dallop of potato salad, and three small spare ribs. I did get like seven small diced pieces of watermelon too.

I finally had to use the ladies room. M and one other person helped me there and back. But while in the bathroom, i heard more complaining from M about me being there. When i came out, M’s husband came, and she complained to him too.

I asked to go home. It was all i could take. M had one of her mean teeny-bopper friends drive me home, as M sat in the back, with two of her other teeny-bopper friends….and right away, M started chiding me, telling me to tell her girlfriends about my sexual orientation, that i am bi-sexual….M is bi too, btw, ,…..but the way M was chiding me, was not funny, and i didn’t appreciate it.

When M got me home, i felt just like i had been robbed of my 4th of July. When i called her to try to explain how i felt, she got mean with me.

I fired M, and hired you to come along as my new caregiver, A. You even talked to M on my behalf, and saw how mean she was being to me. You didn’t like it…..and promised me you would never teat me like this.

The next ten days that you worked for me were nothing but beautiful, happy days. We even made it up to the Avila Port San Luis Pier.

But after Connie came back, i stopped hearing from you. Yes, i understand you have a life, a family, and jobs you have to work at…….But When i tried to find out, via Connie if you were still going to go through with the steps to become my backup caregiver, which i DID have every right to know, you became defensive and angry and snotty, and you and i had our first blowout, because the words you chose were very hurtful to me…so hurtful, i had a horrible meltdown. But then through Connie, we worked it out enough to be friends again. You told us both it would be okay, that you would be coming over to talk it all out with me. We reconsciled, but i still was seeing signs that you really didn’t want to deal with me anymore…..so i tried to talk to you and explain to you how it affected me when you got angry at me, how i melted down…..and i got another nasty gram back, dissing my feeling completely. Then you went onto your wall to slam me to all of your friends and your mom too….likening me to a 55 year old adult who acts like a child…..complaining about my 5 Slurpee a day and candy habit, as if i am wrong to like Slurpees and candy……complaining about me and complaining about me as a person…………

First of all…..i am NOT lying when i say i am Autistic!!!!!!!!…..

I AM AUTISTIC!!!! I REPEAT……..I AM AUTISTIC!!!!!!!!!!!!!

And i am NOT an adult who “acts like a child” either…..that was SO uncalled for, for you to say that. If you understand Autism, then you know that as an Autistic person, we are going to hear, see, smell, eat, touch, feel, and experience things more deeply and differently than a normal Neurotypical person does. You know that many of us have deep PTSD trust issues and abandonment issues, especially with my history of past caregivers, including M, who abused me. You also know that yes, i AM alone and lonely. Even so, i TRY MY BEST to act and conduct myself in as fair and just of a manner, and as much of an adult manner as i can too. The hateful judgements you made against me on your wall, were unfair and uncalled for….and i did nothing to deserve what you posted to your wall for your friends and mother to all see.

I no longer want you to be a part of my life, A. So leave me alone. That means leave me completely alone. Let me heal from yet another friendship gone bad because of people refusing to listen to an #ActuallyAutisticAdult. I did listen and respect you. Believe it or not, but i did. I am NOT that awful person that you posted to your Facebook wall about yesterday.

This blog was originally written and posted on August 17, 2015 via my other blog site. 

Where I Am At Now.....I Badly Need To Move.....Please!!

This blog post is derived from a collection of wall posts that i wrote from six hours ago till now.

Warning, strong language, profanity. Because that is where i am at as of now, tonight, as i write this.

(6 Hours Ago)

"My whole spoon supply has been sucked completely dry again by the damn evil car club east of me, and their constant parading, literally parading back and forth past my house with their fucking loud thundering bass up as loud as it will GO, all just to hear me scream and yell in sheer pain and agony inside of my own house!!!

Now i am PISSED OFF....and it is going to take me a LONG time to calm down.

Connie is fixing me homemade cheeseburgers for my dinner tonight. And getting me more chocolate ice cream too.

After we eat, i will have my shower.

And now. Someone has just driven by and cat-called/banshee yelled at me now. Just what the everloving fuck???!!!!! Why can't everybody in this damn hateful neighborhood just leave me alone???!!!!!

Now i am fucking DONE for the night.....NO spoons.....NONE now!!!!!! I am in shut down mode, and when Connie leaves, i am holing up in my house with all of the doors and windows shut, and my TV and music up till at least after 2 AM tomorrow morning. I will come out again after that to watch and enjoy my TV shows and YouTube watching, and more Facebook. Because at that time, the bullies aren't here.

But no....i am anything but calm right now. I am flaming pissed off right now!!!!!!"

I don't feel safe in my own home. For the past 23 years, this has been a prison and a torture chamber for me, because of the mean bullies in this neighborhood who have taunted me for all these years.

Why haven't i moved? It has always been because of money, and the choices i have always been limited to because of my housing assistance program. And because my mom is my landlord here, and i know she will never rmake me leave because of the meltdowns i have almost everyday sometimes, due to what still happens outside of my house, to me, via those who still to this day, bully me.

They bully me because they don't understand that i am not a bad person or a monster. They don't understand that i am a good person. That i am Disabled. That i am Autistic. That certain noises are real painful triggers to me, and therefore, set me off into sometimes severe meltdowns. Meltdowns that cause me physical pain and the further and further physical breakdown of my over all health.

(4 Hours Ago)

"I am putting myself in hibernation until after 2 AM with the sound on my TV and computer speakers (iTunes) both turned up loud to cover any noises i should hear that should be bothersome to me outside. I will come out of hibernation when i feel it is safe for me to be able to enjoy my TV, YouTube, Facebook, and just being in my own home. When i know the bullies are all gone. I so hope i win tomorrow night's Powerball jackpot....then i will finally be able to move from this awful nightmare!!!"

I dream fervently so of the day i will finally be able to move from this loud, hostile tin canyon street, to a neighborhood that is warm, friendly and welcoming to me. Where my neighbors will understand and take me under their wing, and take me places, and do things with me. A neighborhood where i will be able to look outside of my windows and see beautiful trees, green grass, and lots and lots of beautiful different-colored flowers. Where my house will have enough room for me, and my mobility equipment that i am needing so i can get around better.

Yes, i now have a cane and a walker, and a wheelchair, but the wheelchair is SO very heavy, and hard to maneuver. They gave me the wrong one. So i rarely use it.

A neighborhood where i can get out and roll down its sidewalks. Without the fear of being yelled at, called names, and bullied by the mean men in the warehouse, the auto shop, and the car club.

(36 Minutes Ago)

"Now i need to move more than ever. My next door neighbor informed me last night that she has now made friends with everyone on this street, yes, everyone, including all who bully me.....and she was very quick to tell me how they all tell her that i have a "history" here.

I find it suspicious that Dillon from down the street who i worked so hard to make friends with, who did used to be so nice to me for the longest time, now won't speak to me again.

Yes, i have been having alot of problems with my next door neighbors lately. No, they don't seem to like me either. 

It's my fault. As always.

The problems i had yesterday with the cat-calling, banshee-yelling, and subwoofers, had nothing to do with them.

Maybe not the subwoofers, but the guy who came by and banshee yelled, yes, that was towards me.

I so fucking want out of this cage where everyone hates me because they, none of them understand, that i am a good person who happens to be Autistic, with sensory issues to certain kinds of loud noises, and that i am NOT the way i am because i'm a monster.

I am so sick of everyone thinking of me as a monster. I so want to just run away from this hell-hole and go live where i will have neighbors who will actually see who i am and like me."

I am an Autistic adult who is trying my best to live independently, and i can continue to do so if i have the right help and support system. I do have Connie. But i need help so that i can financially afford to finally move out of here. 

For the sake of my mental, emotional, and physical health. Please.

(Blog written at 12:57 AM, Saturday, September 5, 2015)

Please Listen….

I am really sick and tired of Autistic/Disabled and elderly people being mind-fucked, gaslighted, taken advantage of, ignored, left to sit at home all the time, with no one to talk to, left to vegetate and rot…..i am so sick and tired of seeing us left to be just used, exploited, abused, neglected and forgotten by friends, by families, and our caregivers.

This needs to change. We are human beings.

This is for all of the caregivers who have mistreated me and stolen from me, robbed me of my smile, my joy, and my money and things. I am calling out the following caregivers

***”No-Call-No-Show Rochelle”,
***”Mistaken Milk Elisa”,
***”Putting My Milk On The Floor Alicia”,
***The old lady who refused to let me ride in the front seat of her car because she said i would break her front seat,
***Little Jessica who kept calling me a stupid ass, who told me she was going to leave me to dress myself after my bath, and who said i needed to take my Autism off and just act normal,
***KT who kept complaining about my meltdowns, then called in sick and left me with no one,
***Sherry who loved to yell at me, boss me around, scold me, and scream at me…..Sherry, who also took my food and made me pay for her food and her kids’ food, Sherry who also took gobs of gas money from me, and then yelled and screamed at em all the way to the bank one morning.
***JuJu who took gobs of money from me for her gas,,
***JuJu’s sister Jessica who did the same,
***Ciera, JuJu’s friend, who also did the same,
***KT again who once again started leaving early and then calling in sick again, to leave me to fend for myself
***Letty who talked to me in baby babble speak,

In addition……

***MB, my first temporary caregiver, who came when Connie was gone for a month and who required several of the long cans of beer, afternoon naps, and then who ended up stealing from me:
a nice bath towel
two of my seashells
peanut butter M&M’s
some of my white trash bags
some of my black trash bags
2 of my cans of Febreze air freshener
2 of my bottles of hand sanitizer
2 packs of Pledge All Purpose wipes
1 whole roll of my compression leggings which cost me, out of my own pocket, $125 cash.
***ARN, my second temporary caregiver, who was nice, and then abruptly quit, saying she needed to get three part time jobs that were going to pay her right away. When i had a serious meltdown, she got angry at me, instead of understanding. When i tried to tell her about how it affected me to have her essentially withdraw her friendship and support of me..she got even angrier, and went onto berate me….and then when i unfriended and blocked her, she wrote a horrible post about me and how i am a grown woman who acts like a child, how i require 5 Slurpees and candy everyday, and essentially said that i am not worth her time.

Also for my family members who have nothing to do with me because i make them too nervous..and they don’t understand or get me.

Also for my ex-friend G who ripped my heart and soul to literal pieces.

Also for HEJ and DB, who both promised to help me…..who both told me they had my back 110%, who both told me they were my friends and allies for life…and then they both turned against me too.

This is why i am no longer doing well either physically or emotionally anymore. I am writing this on behalf of all who are in my same boat. Because this needs to change. Because people need to start caring about us and helping us and stop misjudging us and then condemning us to the trash.

Because.

We are NOT trash. We are human beings. Who have likes, dislikes, dreams, and goals too. And we matter too. We too want to still be a part of our communities.

Why I Overreact & Put Up The Walls I Do Today

This post is not meant to garner pity.....this post is being written as an educational post so that people can better understand what we, as Autistics, go through when those in the Neurotypical world don't understand and get us.

I used to headbang when i was a child. I used to also love to run around our round dining room table with my chin against it, so that my chin would feel pain and get a sore on it, because for some strange reason, those kinds of pain felt good to me. These things took away my hurt and frustration.

Yes, i used to have all sorts of stims, and coping mechanisms as a child. I used to also love to sit on the floor in the corner at the end of our hallway and cry for hours on end when i was a child---till there were no more tears left to cry.

I did all of these things, because as a child, i was teased, taunted and made fun of so much, that i often hurt deep inside and was never allowed to articulate it....nor did i KNOW how to articulate my feelings. So, i would do these other things instead.

To be honest, i do not feel like i even had a childhood. Whenever i see pictures of myself as a child, and i go back to all those old feelings of the non-person that i felt i was back then....all of that hurt i felt, comes rushing back to me in waves that threaten to drown me out again. Whenever things would happen, if i would try to talk about them, i was told i had to still mind my teachers and elders, or told to turn the other cheek, and don't fight back....oh no, never ever fight back. Worse yet, i was told i was either imagining things, or that "Oh, they are just teasing you. It's okay."

My father was a harsh stern disciplinarian who yelled at me constantly, who would shake me, pull me by my ears and hair, hit and pinch and beat me...and would even punish me for looking at and playing with my hair, so i could see the different colored shine prisms that i saw in my hair. My sisters would yell at me too for wanting to touch their hair so i could look at the shines in their hair. I grew up being so badly frightened of my father...and was frightened of him till the day he died in February of 2000. I grew up frightened of lots of things....and lots of people.

But from the Spring of my 6th grade on through my 20's, actually until i was about 32, i began to work really hard to hide my true unique and different self, because of growing up in a family who was sadly, and i hate to use such blunt language to describe them, but they were narrow-minded, bigoted, and racist. And they did not accept my being different. It took alot out of me----took so much energy-----for me to maintain a normal persona, when i was naturally neurodivergent from birth on. And still am.

I did all i could to make my family, and others, like me. Because i have always hated it when people don't like me. I even developed such a silly side, so that i could get my family and others to laugh "with" me and not "at" me anymore. 

In my Sophomore year of high school though, things got so bad, both at school and at home....i began to run away. I was having nothing but deeply painful times at school and at home both. At school, i would hide in my shell so that the other kids wouldn't know i was different, but then at home, i began to have a bad temper where my favorite thing became slamming doors and drawers, kicking and punching holes in walls and doors, and breaking brooms and furniture. At school, i had very few friends, and i never had any boyfriends either. I never got to go to parties, and when i did go to dances, i was the wallflower who nobody wanted to dance with. 

So, i developed the temper.

Because it is really super hard when you feel like you are all wrong and damaged, even by your own family. It is really fucking hard. I developed huge trust issues and PTSD from an early age, that have not gone away today.

I learned early on that if people behave a certain way, they were suddenly considered bad, and that it was perfectly just and fair to punish them by turning your back on them and making them out to be a villain.

Even so....i still grew up wanting to believe in the good in people.....and then when that good would suddenly turn different, i would close up on that person and run and hide from them. Without hearing them out and working to resolve things between us.

I am still, to this day, a person who is easily frightened off and discouraged. I need a great deal of reassurance and patience, because today, so many things have now become sensory issues and triggers for me that didn't used to be. 

I was doing well for awhile. I did drive from 1990, until April of 2012, when, due to the combination of my leg condition getting worse, (I have chronic lymphedema on both legs) and me losing one of my friends who i had thought was a real ally to me, i stopped driving and sold my little white two door Toyota Tercel.....and i haven't driven since then. 

To this day, i still have a terrible time being able to see both sides of a story when people things happen. I instead build up walls that get really tall now, and i will run and hide far and wide when i think ppl are turning against me.

And then when i moved here to this neighborhood in 1991, one year later, in 1992, my neighbors who lived right next door to me, suddenly turned on me and began to bully me so badly, i regressed and began to have the same type of meltdowns i had as a child. These neighbors, two girls in their early 20's, would shriek and laugh at me right outside of my living room where i was watching TV or listening to my music, lay on their horns, blast their music as loudly as it would go, and call me mean names. To escape, i would take long drives and stay away until i was sure my mean girl neighbors were in bed for the night, and then i would sneak into my house, so they wouldn't hear me and pick on me some more.

I went through years of therapy, and tried living in two apartments and got kicked out of both of those apartments ending up back here at Mean Bully Monster Street each time because the apartment complex noises would badly upset and send me into even more meltdowns. So, i still live here, and i still have neighbors who bully me in a warehouse and an auto shop that are both located across from me.

Today, i am a physical and emotional wreck both, with chronic lymphedema on both of my legs.....and a huge rock hard lymphedema leg tumor the size of a basketball on my left inner thigh due to all of the stress i've been through. I also have frequent sessions of heart palpitations, frequent panic attacks, and almost every time i sleep, i have extremely bad and frightening nightmares. In addition, i also suffer long bouts of deep depression where it is even harder for me to walk and move around. I live in a constant state of "fight-Or-Flight" mode, and fear and worry that i will be abandoned and left alone. I am still to this day, deathly afraid of certain noises, of being hated, and of the pitch black dark. I have to sleep with lights on, and i get most of my sleep in the mornings and early afternoons.

Between 1992 and now, i went though agency after agency for help

-------and got only shut doors and the answer NO------

During this time, i also made friends with several people who would be nice to me for awhile but who would then turn on me because they felt i wasn't "trying hard enough".....when i knew i **was** trying my best....with the tools i had available to me.

In 2012, i lost one friend, who turned so mean that i was deeply affected for a whole year after that. I began to have horribly frightening nightmares about him. And then, at that same time, my physical health began to decline to where i began to need caregivers, i went through alot more extreme traumatic times of mental, emotional, and financial abuse with those caregivers. These were all huge setbacks for me. One on top of the other, on top of the other.

Some coping mechanisms have helped me to survive all this time, yes, but i have now actually lost the ability to:

Cook

Clean house

Do dishes

And now drive

and lots of other stuff

and i have regressed in lots of other ways.

If i am upset, especially if i feel i am being attacked by others, bullied, or rejected, or ppl are angry at me, or someone taunts and makes fun of me, or does stuff to antagonize me, i will now react by hitting my head repeatedly with my hands, and i will scratch and bite my arms, and hit my chest area with my fists. In November of 2012, i went into my bathroom and gave myself a full-on scalp job on my beloved red hair, after one of my caregivers got really super mean with me. Yes, i chopped all of my shiny dark red hair off.....out of the deep well of hurt i was feeling in my soul that night.

Other things can set me off into these meltdowns too----especially if my stress level is already up. I have no choice but to do all i can to try to insulate myself from the things, and places where i know i will face sensory issues and triggers, because sometimes my meltdowns can be so severe it is like i am dying, and that really terrifies me. I had a meltdown so severe three nights ago, i was shaking violently, sobbing, and i could not eat or drink anything, because of the nausea i had.

I have had so many a bad people experience that i end up driving even the nice people away from me. I am glad i have Connie back in my life though, and that even though Angel can't come to help me at this time, i still have her as a friend. I am also glad i have my Facebook Community friends who get me. I also have my mom, and two of my sisters who are kind to me. I also have my faith. This is enough to keep me going. And i do keep going. I still manage to love, to give, to care, and to be.....because i don't want to give up all hope. I don't like it when i hurt people either. It is never my intention to hurt anyone. I am working on doing better at working to resolve any issues that come up between me and others. I just hope that next time i don't end up hurting anyone and driving them away.

I have nothing but love and peace...and righteous anger at all that is unjust and unfair and cruel.....in me.