Tuesday, October 28, 2014

An Urgent Plea To My Community....And My Family

The following is what i just posted on my wall right now. But i am going to add to it here, because people need to know what happens when families don't care, when our communities don't care......
about those of us who are older, middle-aged Autistic adults
who have fallen through the cracks because of unfair functioning labels,
and all of the unfair and cruel negative information that organizations such as Autism Speaks
has churned out to the public and the media about us, and they continue to
they continue to perpetuate the notion that it is even okay to abuse, exploit, and even to murder us, for God's sake!!!!!
NO!!!!! We are human beings who matter!!!!!!!!!!!
i am writing this as an open letter to
my state's governor, and to Congress, and even President Obama,
to please, once and for all see the plight of the disabled,
and to see the plight of so many Autistic adults,
like me,
who are lonely, alone, and suffering untold agony and harship because of your apathy.............and all of the deep cuts you have made to
my programs, my safety net.....our programs and safety net
that me and my friends so depend on!!!!!!
I am writing this also, as an impassioned plea to my whole family,
my three brothers,
my sister,
and two sisters-in-laws,
my aunt,
and to all of my nieces and nephews too,
and to all the families who just don't care about us
and who refuse to see our plights.

Please turn around and face me and see me as the person i am, once and for all.
Please have mercy on me.
Please Hear my Words and See my pain.
Please, please, please, have mercy on us....on me!!

I am Autistic. I am Me.
My God created me to be this way....and my God does not make mistakes!!
I am NOT my family's embarrassment!! Nor am i their tragedy and burden!!

I am a human being who is suffering way beyond what i can bear these days, and on all levels, in sheer agony and fear all the time now, because i am in terrible physical health now.....and i fear being put into a nursing home where i will have no freedom anymore, to even come onto my beloved Facebook and talk to all of my Autistic community friends like i love to do.
A nursing home
where i will risk being abused even worse
than the abuse i got from all of those caregivers i had
who abused me mentally and financially.....because they felt they **could**.

I am suffering......
Because i still do not have all of the 150 hours that i am supposed to be getting from my county's In Home Supportive Services (IHSS) so that i can be allowed to remain living in my own home, where i am the most comfortable.
And because sadly, but truthfully, most of my family, does not seem to care to help me, or to even acknowledge my existence anymore.
I have always had the support and love of my mother and two of my sisters, but they all sadly lack the finances to help me.
I am supposed to be getting all 150 hours a month of care from IHSS that i am approved for.....but due to an automatic 7% cut that the state of California has made to our program, i only get 139 a month of those hours. That was alot for them to take from me......because i now desperately need all 150 of those hours.
I actually need 8 hours of care a day now.
I am housebound, stranded, without these services i get from IHSS!!

Here is my Facebook post, with more added, that i wrote at about 8:30 tonight:

"I am back for a little bit. I guess i had even more sleep to catch up on, because i ate my lunch about 2:00 PM today, and then went in my chair to watch some TV.....but instead, ended up falling asleep from approx. 3:30 PM till just after 8 PM tonight. I just hope i can sleep tonight now, and then be up tomorrow in time to have Connie come, give me my shower, and take me to my doctor's appointment tomorrow afternoon. And then get my dinner. I do have food to eat for breakfast before she comes.

To My family: please do some deep soul searching.......sadly, you have all let me down........and you have all now essentially abandoned me to let my poor elderly mother, who is on a limited income, do it all.....all that she is *able* to do for me.
And it is straining her to her limit to help me.
If i had known in 1996 that i was going to end up like this in 2014, with the bad lymphedema that i now have on both of my legs today, lymphedema which now also includes a very large lump that is the size of a basketball on my left inner thigh that now leaves me unable to walk more than very short distances, and unable to stand more than 10 minutes at a time...... i would have moved to Idaho in 1996........or, i would have at least taken one of the few places that i did find to rent via my Section 8 housing assistance, up in the nearby town of Arroyo Grande, during that time period. Because at that time, i had a nice group of friends up in Arroyo Grande. Friends who really had my back.

I have since lost touch with them, sadly. And i have been unsuccessful in being able to reconnect with them on Facebook.

But yeah. I should have said **F** it
to the fears i had of taking the risk of
maybe moving to yet *another* Mean Bully Monster Street kind of place
like this place that i have lived in for the past 23 years
has been and still is
i feared moving where i would be bullied some more, like i have been here.....
even so, i should have taken one of the places that was available to me in that town
in the year of 1996.
Because i know now, that if i had taken one of those places in Arroyo Grande,
i know in my heart of hearts that my outcome today,
would have been so much different, so much better,
physically healthwise, and economically,
because in 1996,
i could still drive,
i still had my full mobility,
and i still had the ability to bounce back emotionally
from what i had already had to endure living here on Mean Bully Monster Street at that time.
I would have re-opened my case at Voc Rehab, so i could get the funds to go to school
and learn something that would have still allowed me to get ahead in life.

(((((((But, i know too, that had i of been able to make that move to Arroyo Grande, and had i of been successful in my endeavors with my schooling and finding work, i would have probably never found out that i am Autistic....and i would have never had the wonderful awesome pleasure of being able to meet all of my wonderful Autistic family on Facebook either.......))))))))

Instead, i let my fears of what was already happening to me here,
hold me back
......and keep me bound here on Mean Bully Monster street.......
where my house has now become a fortress for me
I have always done this my whole life though....because growing up,
i was taught by all of you in my family,
to be afraid of my own shadow,
to hide,
to hide who i was
to always be afraid to fight,
to always be afraid to confront,
I was taught
that i was incapable of fighting and confronting
and as for work.....
when i did try to do work, i was always told
that i was not doing it the right way
and that i was never good enough
that i had to do it more intensely,
that i had to do an inpeccable perfect job
or it was toast
I was told i would never have a meaningful job
I was told i would never learn how to drive or have a car
I was told that i was even incapable of having a boyfriend or friends
i was told so much of the time
that i was an incapable person
that i was incapable of thinking for myself
that i was incapable of rising above whatever it was that was "wrong" with me
which i now know is Asperger's Syndrome,
But i am NOT wrong.
And neither is my Autism.
I am learning that now.
Learning to love myself for who i am.
Learning to take my life back that my family took from me.
My life
My personhood 
I just wish my family would all see this.

I really wish and need for the others in my family to understand my plight,
once and for all, please,
and to begin to care and stop ignoring me.
I am online telling my story for a reason.....
and it is NOT to slam them.
I am telling my story
to tell about everything that i have gone through in life....
which sadly includes how my family has treated me
.....only because that is all a vital part of my story.....
and why i am in the situation i am in today!!
I am telling my story, because i desperately need more help
than what i am able to get from the government programs i am on.
And they won't help me. And i am floundering because of that.
I am floundering badly.

I cannot sleep a full eight hour sleep anymore, and then i end up with my sleep cycle all screwed up because of that.
Because i am so worried and afraid of how worse things are going to get for me if i am not helped.
I want so much for people for people to start caring and seeing me
.......and all disabled and Autistic people.......
as the real human beings we are.
There's nothing wrong with my stims.
There's nothing wrong with the quirks and idiosyncrasies i have.
Those should not have ever embarrassed you, family.
God made me this way for a reason.
And that was to be loved and accepted
....not hated and kicked down the way i was.....
and the way i still am by you, family.
I know, yes, i know that i did hurt you all too, family,
and i apologize from the deep depths of my soul
for how mean that i know i could be to all of you
but that was only because i was lashing out
reacting, because
i always felt like you were all ganging up on me
because i was hurting and crying for you all to
please STOP!!
TO Please
understand, love and accept me 
instead, i felt so very unloved and unwelcome
by all of you.
i think that some of you actually hated me from the day i was born
and i feel that you still hate me
and even blame me for the things that have gone wrong in your lives.
I am sorry for how i have hurt you all,
I didn't know how to be
I never knew what to do or say
to make it all right
but the thing of it is this:
i was meant to be born
and i was meant to be born Autistic.

I want and need for my family to know how deeply i hurt,
tonight, as i write this
how deeply my heart bleeds,
because of the insensitive and cruel treatment of me when i was growing up,
all of the cruel words that were said to me,
all of the the shunning of me that they did,
all the cruel names i was called,
all of the the isolation in my bedroom that i had
so that i could get away from them for many periods of time,
especially when i was a teenager
and in my twenties too
because it would just get so hard,
for me to be around them for too long,
because of how it always seemed
they wanted me to always
Be and Act a Certain Way,
and i just couldn't do it like they wanted me to.....
it wore me down,
it took all of my strength to try to conform
to the normal that you all wanted me to be
oh, how that has affected me my whole life!!
You just don't know, family!!
How deeply i hurt!!
I say it not because i want to denegrate my family, but because the way i was treated happened,
It is very real,
and the pain and anguish, and the plight i find myself in today
all of the lonely Thanksgivings and Christmasses i now suffer too
is because of the way they have chosen to
keep their backs turned to me
and they have let it ALL fall to my poor mother to help me.
No one can fully know the emotional pain i am suffering tonight
and the very real raw fear i have of my mother dying
then me being hauled off to a nursing home
where i will be warehoused till the day i finally just die
because my heart WILL give out if i have to be put into one of those facilities.
.........I know it will..............
Because most of those facilities are awful places where they don't care either.
I have seen those facilities suck the very joy of life and spirit out of people.
I know i have my sweet angel Connie now as my caregiver,
and she is doing all she can within her abilities to help me.
But she is limited by the hours i have.
I really need to have more help from my family.
And i so need and am asking for my Autistic community friends, to please,
help me to get my story told......
I do still have my GoFundMe page,
but am going to have to take it down now
due to their support for the wrong side in what happened in #‎Ferguson.
I need help, friends, please, in the worst way.....please share this blog, and signal boost this, please!!!!
I am even tagging those who aren't yet on my friends list but who i hope will be.
Because i need our government, our President, our media,
and for EVERY family out there
to know
and to understand,
once and for all
That we are human beings,
and we are hurting
when you shun us
and hate us
and call us
and monsters.
My heart so aches for my family to finally understand and accept me just as i am.
I ache for society to understand, accept us, and stop cutting our safety net.
And to please restore to us the cuts that have already been made.
Because we need that safety net, and these programs!!
Thank you. "

Saturday, October 11, 2014

My Thoughts On Issy Stapleton, & The Raw Deal She Got On The Dr. Phil Show


The following are my thoughts on the attempted murder of 15 year old Issy Stapleton, written over the course of the past several weeks.

My first thoughts after finally garnering the spoons to watch the two part Dr. Phil interview with Issy's mother, who i shall refer to as The Mom or mother, or K. Stapleton, as it hurts me to have to utter that monster's full name.

I finally watched both episodes of the Dr. Phil show interviews on YouTube, where he interviews K. Stapleton, the mother of 14 year old Issy Stapleton who is Autistic. For those who may not know, a year ago,  the mother drove herself and Issy to a deserted area near their hometown of Portage, Michigan, lit two charcoal grills inside of the van, in a botched attempt to murder Issy and kill herself. 

Here is my critique. The shows made me sick. Utterly all kinds of sick. Even though he did ask Issy's mom: "So, why shouldn't all parents of Autistic children just go and do what you did?", and "Do you (the mom) think it was okay to do what you did?".......both of his shows were totally sympathetic to K. Stapleton and all of those warrior type parents who view Autism as a jail, burden, etc. He never once bothered to tell Issy's side, to find out what was provoking her outbursts. I am sure if he had dug deeply like a good journalist would do, and bothered to do a proper investigation, with Issy's side of the story told too, he would have found out that there were valid reasons behind her meltdowns. I also went on The Mom's YouTube channel and watched alot of her videos, and i noticed how she would talk to Issy in those videos, just like Issy was a 2 or 3 year old. The way she talked to her was very condescending and sarcastically rude. It was dehumanizing. I wouldn't like my mother if she treated me that way. When people squelch an Autistic person, muzzle us, don't listen and respect us, and they treat us and talk down to us as if we are babies, using baby babble on us, like Issy's mom did in those videos, we are going to feel dismissed, demeaned, and othered, and also feel like we are being backed into a corner, so yeah, we are going to fight back. To be honest, i haven't yet read the mom's blogs...but the main thing i got from the Dr. Phil shows, was that he definitely unjustly and unfairly painted Autism in an awful light, and he portrayed both Issy and the other Autistic boy he did a story on in the second show, as monsters. If i had more spoons, i could better express what i am feeling right now. My heart goes out to Issy, and i bet you that with her mother behind bars, she is not having meltdowns now.

First of all, Issy is not an animal, she's a beautiful young HUMAN BEING!! I'm an Autistic adult, and i grew up in a non-accepting non-understanding family. That was holy hell for me. I had alot of violent meltdowns, only because my family didn't understand and have patience with me and take the time to accept me on my level, plus i did not have the supports i needed that Issy has had and does have. I had to mainly teach myself how to cope through all of that, and it was not easy for me. It took time, and lots of it. But my mother never resorted to murdering me, or even having me sent away to any institutions. Autistic people are not animals, and neither are we a tragedy or a burden, and we are certainly not locked inside by our Autism. We just communicate and experience life on a different level than neurotypical people do. If we are given the right supports, patience, understanding, and accomodations, and learning to interact with us on our level, plus treating us with respect and dignity, we can get along well in life. But telling us to not be Autistic, to have quiet hands and feet, is not going to work, because we need those kinds of stims to cope. If what we are doing isn't hurting ourselves or others...why change it? Why change us? That's exactly what causes the meltdowns and resistence.....not because we are bad, but because our neurology makeup is different. We think and process things differently than a neurotypical person does. Please don't punish us for that!!

My thoughts after seeing all of the videos posted by Issy Stapleton's mother:

I have watched all of these videos that Issy's mom has posted, and have read Issy's mother's blogs and her Twitter feed. What i have observed seems to be a mother who has a snarky, sarcastic, self-absorbed woe-is-me attitude, talking down to her daughter like she is a little baby.....and calling her a burden and a jail, because in *her* world, Issy doesn't fit. What i have also observed, is blatant in your face actual disdain and hatred towards her daughter Issy. Issy, who may be unable to fully communicate and verbalize her feelings, still knows full well what is going on around her, and she can tell and feel full well whether she is accepted and loved or not. She does not know how to tell her mom, so that is most likely why she strikes out by hitting. Because no one taught her how to communicate any differently till she went to that school....where she did blossom and grow. It seems to me that when she got taken away from her friends in 6th grade, that is where things started to go downhill.....but Mom couldn't see that....all she could see was the "behavior".....and nothing beyond that. I also noticed how everything seemed to be calm in the schoolroom video that was posted on the mother's channel, until Issy's mom came in, and then was told that her mom was going to be her teacher that day. That was when all hell broke loose. That tells me right there, it was her mother who was the problem, her mother who antagonized and provoked her meltdowns. And i find it very odd that the sound on that video got removed.

Issy's mom did have help available for her, but she chose not to listen to the people who were giving it or to take the help......because in my honest opinion, she seemed to hate it that Issy is Autistic, and seemed to be hell-bent on changing Issy into what SHE wanted Issy to be, and to hell with Issy's feelings!!

I also saw a video that was made about a year after the attempt on Issy's life, where it shows that because of the new caregiver, Issy has made a great deal of progress in the past year since her mother's been away from her in jail...in the video, Issy's dad even confirms this....so now, what does that tell you? That her mom was the problem!! Please, do your research, read Issy's mom's The Status Woe blogs, go on all of Issy's Facebook pages, etc., and her Twitter, before running your mouth and calling ANY human being an animal or a monster!!! 

Telling an Autistic person to have "quiet hands and feet" is like telling someone not to wring their hands or twirl their thumbs. It is my choice if i wish to flap my hands if i am happy or nervous, and to wiggle my legs and feet when i sit. Or if i wish to rock back and forth as a way to help keep me calm. These things don't hurt anyone. So people, please stop telling us we can't do these things!! You are oppressing us!!

To reiterate, I know Issy got abused, 
1) just by what i have seen of all of the videos that were uploaded to the mother's YouTube channel.....including the one where Issy was in the room with the two therapists, and when the mom came on scene, things escalated.....and the sound was taken off the video too, i may add, yup, the sound got taken off, so we can't hear what is really going on in that room.
2) There is also a video---also on Issy's mom's YT channel of the whole family and their cats where they are playing around about throwing the cats around, feeding them wine and rat poison, and putting them in the dryer and the microwave
3) Issy's monster mom's blogs and Twitter feed, where you can see it all in black and white, her disdain for her daughter....why can't she have quiet hands and feet....never once telling Issy's side
4) The video the news station did where Issy is doing great now, and showing that she has been doing great ever since monster mom has been in jail. This all tells me that monster mom has been the problem all along!!

Wednesday, July 23, 2014

When Friends Hurt Friends-In My Defense

Okay, my now ex-friend has had her say, now i will have mine. Names are changed to protect people's privacy.

A month ago, i lost another friend.
A friend who was a good ally.
A friend who i thought was a very good ally.
A friend who i felt would be the last one to throw me away in the trash...
....and all over a freaking Facebook post that she posted entitled "The Six Toxic Behaviors 
That Push People Away: How To Recognize Them In Yourself and Change Them". 

Sally, not her real name, had posted it on her public wall, and then tagged me in a comment, along with another one of her friends, saying the following: "Melissa Fields (Me) and (Other Person) take this with the intent I mean and not wrong. EVERYONE has traits that can annoy others or drive others away. Reading this, I recognized myself and you two on some of these things (none of us lack empathy, tho). So I thought y’all could benefit from the reading as well.” On a public wall, when she could have sent this link in a private message to me and her Other Friend. Which would of shown respect of our feelings and dignity. I mean, what person would like to have their personal flaws called out in public? 

In the weeks leading up to the above event, though, i could strongly sense evidence that Sally's and my friendship was headed for disaster. The first incident was when she had posted my GoFundMe appeal page, and one of her friends, Friend T, posted right off the bat that i could be just another scam artist. Whoa there, that made me angry!! So i came onto that thread to defend myself, as i had every right to do so, and then Sally's other friend, Friend E also came onto defend Friend T and add her two cents, then go onto attack my friend, who i will call Amelia, who had also come onto defend me. A night of me being on the phone with Sally, and then lots of back and forth messages, as i unblocked Sally's friend E to come to the defense of my friend Amelia, ensued, culminating in Sally getting angry and blowing up at me, because she felt i was going to ask her to unfriend her friends T and E. Between me and Amelia, we were both able to convince Sally to please not be angry at me, that it was NOT my intention to friend police her. And it wasn't!! Sally told Amelia she didn't hate me, and that we were still okay, but that she just needed some space to process what had happened, and that she and i would be fine again. And we were. Sally and i talked things out, and we were back on track as the good friends we were. However, i then began to notice her posting alot on her page, posts and memes that were about friends who are too whiny, clingy, needy, negative etc., and who are so "loyal they stick like glue and you can't get them unstuck to you." She was also talking to me less and less. So, i decided to give her space. Hoping things would go back to our normal again.

During that whole time, i was beginning to do alot better emotionally, as i now finally had a wonderful new caregiver, so i wasn't writing as many Facebook notes and blogs as i had in the past, when things were going badly for me. And when i did write the Facebook notes, i still would tag Sally in them!! But Sally alleges that i stopped tagging her in the notes, so i wanted to clarify that no i did not stop tagging her, i was just not writing as many of them. I also wasn't talking as much in our group chat either, for the same reason: because i was doing better both mentally and physically!!

Even though she has now stated to me that it was not the case, that the memes she was posting that were very hostile and mean on her wall were meant towards someone else, i didn't know that at that time, and i really felt they were directed at me. With that weighing on my mind, when i came onto my Facebook to see the notification that i was tagged in a comment, and saw that it was for that particular article above, i got angry. I wanted to talk this out with Sally, because what she did was a real trigger for me. She knows i don't take criticism well at all, knows full that something like this would upset me....yet when i made every attempt to get her to acknowledge me, she ignored my chat messages, and then when i got her on the phone, i got caught totally off guard by her unfriendliness, and so, no, i wasn't calm. Yes, my voice was raised, but i can swear to all who are reading this: i wasn't yelling at Sally. She says i was, and she hung the phone right up on me, and then went straight to her wall and posted "I've lost my words. Do not call me again tonight, anyone!!" [Paraphrased] My anger went into overdrive, and i went to her Timeline and hit the Unfriend button. Next thing i knew, she had me blocked. (She says that i had blocked her, but no, she had me blocked first. So when i saw she had me blocked, i went to my block list and typed her name, and was still able to counter-block her, even after she had me blocked!!) The door was shut...slammed shut, with no explanation. I admit, i lose my words alot, especialy when others shut down on me or put their walls up, i put mine up too. I know this could have been dealt with alot better on both of our parts. I overreacted.....but so did she. Both of us had meltdowns. But the end result was that now my attempts to try to mend this latest falling-out, were met by Sally telling my friends Amelia and Raye, also not her real name, that she was done with me, that she could not deal with me anymore, and that i could just go pound sand. This was a new Sally that scared me shitless. I did not like this new cold, insensitive, callous Sally. I went into mourning. I could not believe that Sally, of all people, would ever turn against me....all over a Facebook post. I was willing to talk, and just ask her to untag me, and talk about why she felt i needed to read that article. I wanted to know just what she was trying to say to me. I wanted to know if hers and my friendship was over.

Since then, things have been said on both of our parts, out of our still unresolved anger and hurt towards each other. This is why i beg everybody that i know to please let's have open lines of communication. That if a misunderstanding arises, please, can we talk it out? So things like this won't happen. Sally herself promised me numerous times during our friendship that she would take space for herself at times, yes, but that she would never ever give up and shut the door on me. That she would see my case through to the end. And dear God, i so felt she would be the first who would be happy for me that i was now happier on Facebook!! Yet i saw few likes from her on my now postive posts. She began to ignore me more and more, and then i started seeing the hurtful memes. Memes that i didn't know at that time, were meant for someone else.

Here's some backstory: Sally and i were friends for the past four-plus years. Sally and i met here on Facebook, through some of the Autistic groups she and i were in. As an adult Autistic who has suffered a lifetime of being misunderstood, left out, outright rejected and bullied by my own family, rejected and bullied all through school, then bullied even more when i had to, out of economic neccessity, move to a neighborhood with mean neighbors on all sides of me, and then had to face the loss of yet more friends, then the eleven caregivers who were also God-awful abusive and cruel....even so, a person who has fought like holy hell all of my 54 years on this earth just to feel safe and be accepted somewhere, somewhere.....this latest loss has been more than just another bitter pill for this soul to have to swallow. This has been a blow so shocking to my system, that i have entered into a new realm of self-doubt and depression, and now i am even more afraid than ever before to trust anyone, to let anyone get as close to me as Sally and all of others i have trusted, only to have them too, all turn against me.

know that i take things very personally, that i am ultra sensitive, easily hurt, and very quick to put up walls, and run and hide when i feel i am being threatened physically or mentally. And, it is hard for me to even distinguish between the two when i feel threatened. I am a people person, but i am still, even as an adult, woefully horrible at keeping friends. I still do not know how to be a reciprocal friend. I do not know how to give and take, or compromise. I try my best to do all of those things, because i am compassionate, i do care, but i fail and fall alot still, because i guess i have been hurt so much, that all i know how to do now is put up the only defenses i learned, as a child....to run, figuratively, crying and screaming away, to hide back in my own world, my own safe cocoon. Where i would truthfully stay, if i knew i could survive inside of there, because frankly, i am feeling more and more like going to that cocoon and never coming out ever again. It's PTSD. Abandonment issues. I have both. Deep-seated. Still unresolved. I am an Autistic adult who has fallen through the cracks. I am needy. Very needy. I need for the world to understand how this is. I can't snap out of this. I can only do what my mind and body will allow me to do each day, each moment. If people get angry with me, i take it hard. because i am so afraid of being walked off on again.

Earlier this year, when i was still in the throes of having to suffer through even more daily abuse from the caregiver i had at the time, i was friends with a lady who lives in an Upper Midwestern state. This lady, who i will call Lady X, along with Sally, convinced me to talk my mother into placing the units where i live on the market to be sold, and with the money, i was going to move to Lady X's state, to escape all of the hell i was going through. But that was not to be either, as things exploded one night between me, Lady X and Sally, on our chat thread. That was a huge blow, as Lady X retaliated by calling the police to come do a false welfare check on me, then she called Adult Protective Services and IHSS on me too, to try to have me hauled off to either a nursing home or mental institution. Sally said "Not to worry; i am here for you now. You don't need Lady X now." I believed her. I have believed everyone who has come into my life. I truly think that my new caregiver will stick by me though.....but my trust in the human race as a whole at the present, is at an all-time low now. Everytime i get upset now, it really affects my legs and feet now.

As God is my witness, this is what happened. And i do not write these blogs because this is a pity-party. I am genuinely lonely, i am genuinely in need of friends who truly will get me, my Autism, and who will accept me and my Autism, who will be here for me. I write these because of this, and because i want to get my story out there.....because i want to educate others. Thank you.

By the way, i want to go on record as saying that i never ever said that Sally's art is fake. I myself draw using pictures to go on; many artists do that, and then we add our own personal touches to our piece that we are working on that makes it ours. What i had said was that another friend had told me her art was fake. But that is not why i don't trust Sally now; i don't trust Sally now because of the way she is choosing to treat me now by shutting me out, and discounting all of my feelings, and playing head games when i try to talk to her to reason with her, and to try to make peace with her, like i tried to last week.

Why Doesn't America Care For Us?

I wrote this on a very bad Sunday, a few weeks ago.

The following is not a negative rant just to be negative, this is a serious rant to call for ppl to start caring about your disabled and elderly brothers and sisters, aunts, uncles, cousins, nieces, nephews, mothers fathers, daughters, sons, neighbors and friends.

Because no human is an island unto themselves. We all need each other. We all need love. We all need to feel as though we matter. We all need to feel as though we are a part of our communities. We all need to feel like we are safe and cared for.

Eeeeeeeeeeee......today was bad. Very bad for me, because i am housebound and cannot go to the store to get new batteries for my remote when my remote dies. I can't go and get ice cream or other things i am craving. Because i have no way to get there, even to walk, because i am unable to walk more than 20 steps without my whole body hurting excuciatingly.

If this is what it's like to get old, i don't want it.

Yes, the first thing that happened today, was that my remote for my TV sound did die, then i discovered that i have NO AAA batteries to speak of in my entire house, so i couldn't replace those batteries, then when i went to use the toilet, my toilet handle chain decided to come off, and i had to bend over into the toilet tank and fix that, or go without a flushing toilet for the whole evening and night...... So, i went to watch a movie, turned up the sound to where i felt i could have a happy medium between voices and music and scene noises, and, as expected, i could not hear much of the dialogue as is sadly the usual for most movies made after 1986, but the street noises and music in the movie came on real thunderously loud, and i had no more control from my chair anymore....then my satellite receiver decided it was not going to connect to my wi-fi, so i had to just stop my movie, and come back to the computer, because even to watch YouTube or listen to Pandora on my TV from my chair without the remote for my stereo, is also impossible as the sound needs to be adjusted accordingly for those things also. I did fix my wi-fi, but again, with no remote for my sound, why sit in my chair now, unless it's to just sleep or read? Or twiddle my thumbs?

Oh, but my dinner was fabulously delicious. Even though i had no one to talk to as i ate in my lonely little kitchen. I was able to stand long enough to heat my dinner in my microwave and put the Ranch dressing in a paper bowl so i could dip my ham and veggies in it. And the peanut butter M&M's and ice cream bars that i had for my dessert were delicious too. But i cannot enjoy my TV at all tonight, unless it is a regular show like the news or HGTV or the Food Network. On those channels the sound is even, and i can hear everything. I am really hoping that my caregiver will be able to shop for me tomorrow, so that i will have the new AAA batteries i need to make my stereo remote work again, so i can watch TV again from my chair without having to get up and down repeatedly to go over to my stereo to turn the volume up and down. It wouldn't bother me to do this if my body did not hurt from my hips and back to my knees and left leg and foot, because i did have to get up to change the channels and turn the TV up and down when i was growing up...but now i am not in good health, and i hurt, and hurt greatly when i walk and stand too much. 

And this was a Sunday. A Sunday that i could have enjoyed.

I really am hoping that this week will be good to me, and that i can even get out to go to a park this week where i can see some trees, flowers, water and green grass!!! 

Going to watch the news now that i have DVR'ed. Because like i said before, fortunately, the audio stays consistent on that, and on my soap opera that i like to watch, and on HGTV and Food Channel too, so i don't have to worry about that. Movies are going to continue to be a huge no-go tonight, though, till i have the new batteries for my stereo's remote again.

When i win the big lottery jackpot, i am going to lobby to start getting huge complexes of 1, 2, 3, and even 4 bedroom single-story set-alone cottages that will be set up in a community that is totally sensory-friendly and that will be a totally Autistic-friendly safe space that will have easy access to transportation, Autism workers for each person, and total wraparound services for us all---so that we who don't have family support and local support, won't have to be isolated like this anymore.. I would love to be able to build several in California, and then some in New York, Chicago, Boston, Atlanta, Milwaukee, Denver, Dallas, Seattle, Portland OR, Boise, Pocatello, and so on. I just don't see why American people are so indifferent and uncaring towards those who are marginalized, homebound, disabled, etc. Dear God it just does not have to BE this way!!!! People should not be frightened to grow old, or to be disabled. We all need to love and accept each other as we are, and care for and about each other. Our families need to care. The word "giving up" should no longer even BE a part of our vocabulary, especially when it comes to disabled and elderly people!! Even this country's CHURCHES don't give a shit about us!!! That's a real TRAVESTY!!!

My Statement And Update

My statement and update:

The reason i am not blogging and posting as much as i used to, is that i no longer have the awful bad caregiver issues. My current caregiver is a sweet angel who takes excellent care of me, and she and i are going on four months now with no problems. My legs are getting slowly better too, as i am now taking Lasix. My hope is that i will get the money to move, and also to be able to go have the leg surgery too, when i lose enough weight. The other reason is that my street problems with the bullies does not happen as much either. It did Friday when the owner of the auto shop wasn't there. And then that night, the appliance shop owner, for some odd reason, also decided to flare up too. But things ARE starting to be taken care of in my life. When i do post, i will still tag my closest friends though. I am not ignoring anyone, any of you, or ignoring my chats and groups either. I simply have not had as many huge problems lately.

The blogs i took off of my Facebook can be found on my Wordpress account, of which i will link below.

As for my GoFundMe page being for me to get money to take vacations? No. It is foe me to try to get money so i can make a move away from this street. Because it is still very noisy. The reason i mention my dreams and goals, is because those are my dreams and goals, and my dreams and goals are a huge part of me.

As for me friend policing anyone? That has not happened either. I do get scared of certain people, so i voice that concern. But i would never ever tell any of my friends they can't be friends with someone just because i don't like that person. I instead use the block feature so i won't have to interact with the person who bothers me. Friend policing is a form of muzzling and oppression, and i always try my best to be fair with everyone. If i have made anyone feel as though they are being policed and oppressed, i apologize. I will try harder not to fall into those behaviors. Please remember, i am Autistic, and i am still learning and growing. I am merely here to tell my story, to have friends, and a solid support system of people who will never turn against me and turn their backs on me. And i am also here to educate, so this can become an Autistic-friendly world for us all.

Thank you.

I Need My Family, I Need Local Friends, I Need Services, I Need My Country To CARE…Because I’m A Human Being!!

Note: I originally wrote this note/blog on June 23, 2014. I am reposting this tonight, because i had deleted this when i had deleted all of my Facebook blogs, and i want this blog to get read by as many people as possible. Thank you. 

Dear Family, Dear City, Dear United States Of America,

My name is Melissa Fields. I am a middle aged Autistic adult. Guess what? There are hundreds of thousands of us who are Autistic adults who are screaming out to have you all finally hear our voices, listen, and recognize us. Yes, we are talking……we are talking in multitudes……we are talking and telling our stories all over the internet!!

Stop listening to Autism Speaks,

and instead hear my story and the stories my friends are telling, because that is where you are going to get to know about Autism.

To my family, do you all realize that when Mom passes away, i will then be fending for myself even more than i have to now? Because all of the rest of you, with the exception of two of my sisters, all shun and ignore me and cut me out of the whole Fields Family Equation like i don’t exist. I do not feel i can pick up the phone and call any of you, and some of you even have me blocked on Facebook even. Yes, my eldest brother does pray for me, and he even has whole Catholic Masses said for me, but he never ever calls me. Never. And guess what? I am not doing so well anymore. My physical health has gone so far downhill that i now need daily care, in order to be able to remain in my own home like i desire to continue to do. I have tons of unfulfilled dreams that i have clear from childhood that i have yet to fulfill….dear family, remember how i used to spend hours every afternoon drawing pictures, elaborate pictures of faces, houses, trees, flowers, bushes, and roads? I even memorized what some of the TV movie intros used to look like, from the 4:30 Movie, to the ABC Friday Night Movie, and i would draw them too. I even drew the US 101 sign. Yes, i used to draw and doodle…..alot. I used to love to sit and sneak the radio and listen to Top 40 radio, which you all forbid me to do, because it wasn’t your country western music. I had a love for art, a love for rock music, and i wanted to do so much with my unique creative mind, but you all would ridicule and squelch me…..even so, my will to succeed in life, some how, some way, has kept me going all along. I continued to draw, doodle and write, and i continued to dream of being a nationwide FM rock radio deejay one day who would go from coast to coast, radio market to radio market. I was determined that i would be the next Jim Ladd, or even Mark Goodman, like on MTV!! I have always dreamed of my adult life being in Hollywood and Manhattan both. Yup, bi-coastal!!

My story is many an Autistic adult’s stories who lack family support and local community support….today, i am in agony on all levels, especially because of what i’ve been through for the past 22 years of my adult life that i have had to live on Mean Bully Monster Street. Before i had to move here from a neighborhood where i was doing well, for economic reasons, and my dad’s failing health, i was doing well. I had finally learned how to live on my own, cook for myself, do my own housework, and i even learned how to drive and got my drivers license and my late Grandma’s car in May of 1990. Back then, i was trying. I remember, family, how you all chipped into buy me a new electric typewriter the Christmas of 1990. And i did appreciate that. But i tried to use it, and i just could not master it. I failed typing in high school because of the manual dexterity it took to use a manual and electric typewriter, and i could never learn how to do the margins and set tabs correctly, or do the speed typing tests. I knew that i would learn much better on a computer though, as the computer has always done those things for us, a computer keyboard is more easy to use, and i can type quite well and quite fast with just my two index fingers on the computer!!
What can i say? In these past two years, alone, i have had to endure the loss of one friend who i really had thought was in my corner, and then several very abusive caregivers….all at the same time. I now finally have a caregiver who gets me, who is nice, who cares, and who does not take my money, like the others did. And she does not neglect me either. But physically speaking, my legs and feet now are so swollen with chronic lymphedema, plus a leg tumor on my left inner thigh that is now the size of two basketballs. I have stopped driving. I sold my car. I have even stopped drawing. I still write though. Because i am determined to tell my story.

In March 2012 when my then friend of six years, R, not his real name turned against me and began to “pen” me a series of mean, sarcastic, hateful emails, i shut down. His abuse flipped a new switch inside of me that switched me right back to not having the ability to drive a car again, and it made me literally afraid to go places, anywhere anymore, by myself. Then when i went through the caregiver abuse, that just further eroded my well being and ability to do many things on my own anymore. Today, i am a wreck….with deep-seated PTSD issues, and deep-seated abandonment issues,….due to my childhood, my teen years, and these past 22 years of living here at Mean Bully Monster Street. I now have lots and lots of nightmares about R, about some of my abusive caregivers, and other past neighbors.

I do not tell this story to get pity, or to wallow in self pity. I tell this story for several reasons:

I need to tell this story because **I** need more help. I need for my family to understand me, to stop ignoring me and start being here for me.

I need to tell this story for the sake of my Autistic community friends, because all of our stories NEED to get out there, so all the world’s governments will get it that we are living, breathing, walking human beings who do happen to need real time help…..not the kind of help Autism Speaks talks about but REAL help and services that are going to help us with the real time issues we face.

We do not need or want to be fixed or cured. There IS no cure for Autism….neither do we wish to be seen as burdens, wrong, bad, inept, (and excuse the term: retarded), and i apologize for saying that word, but people do call us that word, or less than. We are not a curse. We are not a tsunami. We are not an epidemic. We are not to be eradicated or euthanized or murdered. We need to be recognized, and to have real time services and supports that will help us to be able to live the meaningful lives that we were meant to live. Forced ABA therapy ain’t gonna do it. Neither is punishing, yelling, or screaming our Autism away. Or praying our Autism away.

What’s gonna do it is:

Love and lots and lots and lots of it.

Acceptance….true genuine acceptance.

Patience and lots and lots and lots of it.

Understanding that meltdowns are not temper tantrums, that they are a result of not being heard and respected, the result of abrupt changes, and the result of things that are triggers, and sensory overload.

The willingness to listen and learn the way we each are, what our rituals and routines are, what ou favorite foods, music, TV shows and movies are, the ways we like things done, etc., and to try your best to not change these familiar things for us. To learn what our triggers are and to work hard to keep us safe from them.

Inclusion. Being fully included in our communities. Schools. Colleges. Churches. Synagogues. Restaurants. Movie theaters. Sports events. Concerts. Etc.

Talk TO us, not over us.

Listen without interrupting.

Don’t dismiss and silence us.

Stop making cuts to our programs and our safety net.

Restore the cuts that have been already made.

Let us have full opportunity and access to quality healthcare, vision care, dental care, mental health care, and Autistic services.

And know that it is nothing about us, without us.