Saturday, October 11, 2014

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

#WalkInIssysShoes

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!!! 
#DisabledLivesMatter
#JusticeForIssy 
#TellIssysStory 
#DontCallUsAnimals

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!!
#JUsticeForIssy
#TellIssysStoryToo
#DisabledPeopleMatter
#DisabledAutonomyMatters
#DontCallMeAnAnimal
#DontCallIssyAnAnimal

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.

To All Of My New Friends, (Re-Edited)

To All Of My New Friends,

Welcome!!
This is a note to explain about me and my situation. I am almost 54 years old, and i am Autistic. I have suffered my whole life, not from my Autism, but from growing up being misunderstood, misjudged, and rejected, because most people have not taken the time to understand and get to know me. My aim in life is to tell my story, by venting and blogging and vlogging, so that i can finally get the help i have needed for so long, and to educate everyone globally as to how life is for those of us who are Autistic and who grew up without support, acceptance, and love.

I am not a drama queen, nor do i like drama; however, i do happen to vent alot, yes, i vent a great deal, only because it is the only way i know how to cope with what happens to me. I need to vent, so i can get it out, so i can process through things that happen to me, and to educate all of you who i come into contact with, so you will know and understand. So you will all **get** this. My hope in telling my story, is to make this world Autistic-friendly.

I have unfortunately been the victim of much bullying, sadly, by most of my family, mean schoolkids, etc.,…..and i still am being bullied to this day by mean men in several nearby businesses where i have been living for the past 23 years. Yes, this bullying has gone on for the past 22 years of the past 23 years i have lived in this particular house. On top of this, i have had to deal with many of my close friendships that i have had, ending very badly, with the people turning angrily against me. This has given me a great complex and fear that it will keep on happening, over and over again, to where i will just not be able to take it anymore, and my heart will just stop beating from the sheer exhaustion. 

I promise you, this is NOT a pity party. I am trying to get my story to go viral because of the above reasons. I am desperately unhappy. Please put yourself in my shoes. If you lived trapped where you are being bullied, on top of never being able to cut a real break in life because nobody believed in you? Sadly this is, and has been, my lifetime reality. I only keep on living because i refuse to commit suicide and risk being sent to hell if i do that. So i suffer and suffer….these are please for help, and to be heard….these are not pity parties or me being a drama queen.

To continue my story……

I have run all of my past personal caregivers off too. Because most of them either didn’t understand and/or, they could not deal with me. Because i do have rather loud dramatic meltdowns when i am upset and on sensory overload.

I have also had many of those caregivers be very very abusive towards me.
It has always been hard for me to keep friends. And my caregivers.
Reason is because i am a very complex person; i still have lots, lots, and lots of fears, rituals, routines, hangups, phobias, and fetishes, that most people don;’t understand, nor even want to. And as i stated above, i have alot of meltdowns. 
I have deep ongoing PTSD issues. I have a deep-seated fear of being abandoned over and over again. My PTSD is getting worse, not better.
I have noise sensitivities to certain types of noises, mainly the loud noises the bullies in my neighborhood make deliberately to antagonize me, with their motor vehicles, and their LOUD booming bass.
I cannot wear headphones or earplugs, as things in or on my ears bugs the living daylights out of me too. Nor do i feel i should have to wear earplugs in my own home just to be able to live my daily life.
I do have a sense of humor, i am fun, goofy, and easy to get along with, if you are genuinely accepting of me.
I am also very compassionate, caring, and i do not lack empathy for others at all. I am however, in my own world much of the time, and it is hard for me to show or reciprocate affection and appreciation towards others.

I love people, children, babies, and animals, but i am not good at being close with anyone, either human or creature. I cannot handle holding babies, or cuddling with a cat or dog, due to sensory issues with that kind of interaction. I love hugs though, but i have to be hugged a certain way, or that can even throw me off.
My brain and body are simply wired differently.

Please get to know me, and feel free to ask me questions before you judge me and give up on being my friend, please. Please also let me talk. Please don’t talk over me, or at me or talk down to me. Or talk to me like i’m a baby. Above all, please don’t take things i say or do personally, and get angry at me and shut the door on me, because that kind of anger when people get angry at me, is unbearable for me to take. If you do get angry, and need to distance yourself, please at least reassure me it is only temporary, that though angry, you are still my friend. I can take it better then, and won’t freak out so badly.

I get easily discouraged when people get mean and harsh with me and give up on me. This makes me not want to even try anymore.
Please know that this is my wall, and my safe space here on Facebook. I seek to make friends with people who are going to truly “get” and accept me. People who i know will be there for me as my forever friends. I need forever friends in my life. I freely admit that.

I am a bleeding heart liberal person who has faith, and i do cuss, and i am quite outspoken, so please don’t let that throw you. I am not a mean person though. I am not here to hurt anyone, or to fight, just to tell my Autistic story, so i can do my part to help end the hate and stigma that is still out there. And again, so i can get the help i so desperately need so i can move on with my life in a more peaceful setting than where i am living now.

I wrote this because i have had alot of problems even here on the internet being understood.

Thank you all for listening.

Friday, May 9, 2014

My Big Wishlist

My big wishlist...
would be to have a secure circle of local friends
who are Autistic and who get me and who won't ever flake out on me.
would be to have the money to be able to buy my own nice two bedroom home up in Arroyo Grande and to be able to have the money to pay the taxes, insurance and upkeep for life on my little home. This home would have a nice backyard.
would be to have my legs healed so that i can walk, drive again, and do lots of other things for myself again.
would be to be able to have the money for my new car, and to be able to pay for its upkeep, and insurance for life.
would be to be able to have my trips to Northern Michigan, New York, Washington DC, and New England.
would be to be able to see the Northern Lights and the Midnight Sun.
would be for me to be able to publish my life story.
would be to have people stop giving up on me and throwing me away.
would be that my family's hearts would all soften towards me and that they'd all stop ignoring me and being angry at me for who i am, and for telling my story.
would be for my mom to be able to have the money to fix these two little cottages up so she can get good rental income off each unit. These two units where i now live need alot of repairs that she just cannot afford at all at this time.
would be for this whole world to start understanding and accepting us Autistics....to stop trying to change us, cure us, and "fix" us.
would be for there to be a REAL safety net for ALL who are disabled that is compassionate, just, and fair. A safety net that cannot and will not ever be cut.
yes, this is my big wishlist
.