Friday, May 15, 2015

My Story, As Written In A Comment I Made On YouTube

My blog entry below is in response to a video made by one of the vloggers i watch. It was a video about body image and beauty standards.

To be brutally honest, i have never felt beautiful. Or welcome on this earth. Today, i do feel more confident in myself, but i still struggle on all levels. I have never worked either, and have survived my whole adult life on government benefits. 

I am Autistic, and now suffer with chronic lymphedema in both legs, plus a large lymphedema tumor on my left inside thigh that now makes it hard for me to walk. I used to drive, and drove for 22 years, but had to give that up due to my legs.

When i was born, pretty much from the get-go, from childhood on, because i was always very different than the others in my family, and everyone around me, my family alternately teased and taunted me, bullied and scolded me, and they did all they could to make me afraid to stand up for myself and be myself. I was criticized all the time, and left out of some of my family activities. My dad came down very hard on me and i grew up to both fear and hate him. My three brothers were always turned off by me as well. In addition, one of my sisters has always been harsh with me too. I got this all through school too. I never had boyfriends, and never had many friends, period.

In 5th grade, we lived in the country and i went to a rural grammar school where i got bullied more. Suddenly, both my siblings and schoolkids were calling me an animal and a dog, and teasing me about my large nose. They would routinely call me weird and a retard. They would also call me fat and ugly even though i was very skinny then. I grew up to feel like i would never make it in life. Professionals and my family and schoolteachers would routinely tell me that i'd never learn how to drive or get married or have a meaningful job. They all said i would live at home with my mom and dad, and then when they died, that i'd go to a home.

If i can be honest, again, i honestly have felt like killing myself several times throughout my life. Growing up, i tried to run away from home several times....twice in the 7th and 8th grade, and four times in my Sophomore year of high school.

I just turned 55 years old yesterday, and the reason i am still alive, is my faith, and the kind few i have met along my half century journey who have believed in me. Plus, i do have love and support from my mom and two of my sisters. But to this day, all of my other siblings and my nieces and nephews all shun and ignore and have me blocked out of their lives. My father passed away in early 2000, so he is no longer here to hurt and reject me like he used to.....

The way i have coped? As a child, i would turn inward to my safe inner world and draw detailed pictures of houses, people, and roads, and i would make imaginary friends out of them. I began to write and keep journals in 7th grade. In my neighborhood, i made friends with mostly ppl who were older than me who were kinder to me. I also turned to food, and i now weigh 340 pounds.

I also had hairy arms growing up. I used to keep them shaved so ppl wouldn't tease me about that either. I was not always fat. I slowly began to gain weight in my Sophomore year of high school. If i can say one thing about myself that i love, it would be my hair. I still have nice hair, and always have liked my hair.

Back to my story. I barely graduated high school because it was so hard for me on every level, hard, and never had the opportunity to go onto college, because again, i was told, and i still believed them, that i would fail. Autism is a very complex neurological disorder that many, to this day still believe is something that is wrong and bad and that we need to be changed, cured, fixed, etc. Many ppl mistakenly think Autism is a behavior issue, and so many of us struggle needlessly because of that.

I have lived on government benefits since 1981. Not because i am lazy and don't want to work. Because i never found a way to be able to work successfully at a job where there are so many things that can cause sensory overload...noises, people, too much coming at me all at once, because my brain is wired differently and i can only process and deal with so much, and have always had a really hard time when ppl don't like me and are harsh with me.

I thank God for the internet, though, because i have found a huge forum of other Autistic people like myself, and through this, i have learned to love myself. Through Facebook, i have been fortunate to be able to meet hundreds of other Autistic adults, and i am now involved in advocacy and activism work for the Autistic/Disabled communities. Since being on Facebook, i have been able to be educated, that being different, being disabled, does not make me less-than, and it does not mean i am doomed. I am trying to get my life story about growing up Autistic in a hostile environment where i was misunderstood and misjudged and cast off, published, so others can read my story and hopefully learn from what i went through. I also cope by watching YouTube vlogs, music videos and travel videos on YouTube too.

I keep going, because i have always been too afraid i would go to hell if i did take my own life. So, i keep going, praying, hoping, that i will still get the help and way out i need.

I have a YouTube channel of what i go through on a daily basis because of the type of neighborhood i have had to live in for the past 23 years. Warning, in many of the videos i am yelling and screaming.....having meltdowns because of the sensory overload i was in when i filmed those videos. I lose my words when i'm upset. I process life much more differently and deeply, and always have due to being Autistic.

I'm sorry this was long. I am thinking of deleting it....but maybe not. But....yeah.....this is my story. Sorry it is such a book. Please don't hate me for this being so long.    

Monday, April 27, 2015

Why I Write What I Write

The reason why i have elected to tell all of my story online, including how i grew up, is for several reasons. And it is NOT with any malicious intent, although i still hurt deeply, more than any of you can know or realize, by how the majority of my family treated me growing up, and how they still treat me today.

I cope with my life by venting, using my ability to put all of these feelings that get pent up within me, into words, because to keep these emotions inside, would be bad for me, as in me having many more frequent meltdowns, shutdowns, and how it could even affect me even further healthwise......
but i am not here, nor have i ever been here, to slam my family just for the sake of slamming them. I am here on the internet to educate everyone and make the point that how our families treat those of us who are disabled can greatly make or break us.

I am here to tell any of you who are non-accepting of a disabled family member, to please stop and think how you are affecting and hurting that person, and how you would like it if you were disabled and got treated that way.

I am here telling my story because i want people to know how we disabled people hurt way down deep inside when our family ignores and shuns us, and puts up walls between us and them, and when they do acknowledge us, it is with negativity, derision, hate, disgust, teasing us, taunting us, using our fears against us, as what did happen to me growing up.

It is not just to try to make my siblings realize how they greatly hurt me, but how it greatly hurts all disabled people when their families elect to treat them as second and third class citizens, to make fun of them, exploit them, tease them, and bully them. Because guess what? We DO notice how we are treated, and made to feel. We notice the looks, the stares, the whispers, the sneers, and plots to play yet another prank or head game with us, just because you feel you can.

To all the families out there who are doing this to a disabled member, when you do these things, you are making that human being feel like they don't belong, like they are wrong, and damaged goods, and like they have no right to even be alive. That is wrong...on ALL fucking levels....and again...i implore you to stop doing this to the real human being God has placed in your midst.

Your disabled daughter, son, brother, sister, cousin, niece, nephew, aunt, uncle, needs your love, and acceptance. They need to know you value them, that their feelings matter, that you have their back, that they are not cut off, that they are not all alone, that THEY MATTER. They are not here for you to use as your punching bag, or to use, or exploit or take your hate and anger out on. They need to know you care. Nothing kills a human spirit than when people discard, dismiss, muzzle, and silence another human being just because they are different.

So, just stop it, and start loving and accepting and getting to know the disabled family member. Take them places. Listen to them. Really listen. Without interrupting and trying to finish sentences for them, or assuming they are going to say what you think they are going to say, because you don't know until you've heard all that they have meant to say. Don't ridicule that person's quirks and phobias and rituals or way of talking and communicating. If they flap their hands, or twirl their hair, or rock back and forth, it is okay.

It's all about respect, dignity, acceptance and unconditional love.

Friday, April 17, 2015

I Am Autistic, And I Am Doing The Best I Know How To Do

I try so hard to educate people about my Autism, and i still get misunderstood and misjudged.
It makes me want to give up, go into a cocoon, and not even try anymore.
I try my best to fit into a world that is still sadly not geared towards Autistic children and adults. 
A world that still sadly does not get Autism and Autistic people.
Because we are still wrongly thought of as spoiled, and selfish, and behavior problems.

I know i come off as very demanding, and inflexible, for example.....but i have, over the years, developed these certain coping mechanisms because of
growing up in a mostly unsupportive family who teased and taunted me,
because of where i have had to live with the bullies and their noises for the past 23 years,
and because i have always, always gotten highly upset when i think ppl are against me or angry at me, or i think they dislike me.
I have always been very very sensitive to how ppl treat me.....and i know that that too, comes off as like i am selfish,

but i am NOT a selfish person. Neither am i lazy, or spoiled.

It is so hard to explain Autism to those who don't get it, or don't want to get it......like that certain awful senator who likened us to being brain dead.....and a catastrophe....and a tragedy. 

But i am who i am. God made me this way, and God made all of us Autistics the way we are.
Because God wanted for our world to be neurodiverse.

I am still a human being with feelings. Deep deep feelings.
I still love, i still care, i still feel, I still have deep empathy and compassion for everyone. 
I don't lie, cheat, or steal. 
But my neurology alone, prevents me from being able to get along well with people, handle people, keep friends, cook for myself, wash my own dishes, do housecleaning and etc.,......then come my physical health issues which compounds my inabilities even more now. 
I can now no longer drive and am mostly housebound due to my legs now, so i need to have a caregiver to take care of all of these needs and my outside needs as well.
I love the caregiver that i have now. I love her to the moon and back. 
But honestly, i would so love to be able to drive and have my own car again.
I kinda miss my little white Toyota Tercel.
I so miss the drives i used to love to take around the Central Coast.
I so miss the ocean, and its majestic waves, and the beautiful scent of the salty sea air. 

I at least want to drive and be able to shower myself and dress myself again. 

I will still need help at least with being able to have someone with me when going out and doing my own shopping, and errands, and trips to medical places, and with housecleaning, and keeping my kitchen clean, because of my lack of spoons to be able to do those things myself now. 

After what has happened to me with losing friends, ppl turning against me, etc., the past three years, i am now petrified of going anyplace by myself anymore, and i now need someone with me.

I have had bad experiences in medical offices and now need someone to speak for me when i lose my words and spoons to talk.  

The demanding traits i have, are my way that i cope with what i can't handle. I
Because i don;'t know how to do things like ignore and tune out what upsets me----because i lack those filters to be able to do so.
So my defense mechanism is to try to control my environment to where i won't be taken way too far out of my safe zone, if that makes sense.

Because of my sensory issues with things that are too upsetting and overwhelming to me.

I do know how to compromise and to meet people halfway, and to give and take, to a point. But when i feel i am pushed too hard, that i am not heard, my anxiety levels go up, then i go into meltdowns and then deep dark depressions where i cannot rest, relax, or sleep.

I AM trying my best.
With what tools i do have available to me,
and how many spoons i have available to me.
Please have patience with me.....as i am still learning and growing.
I would never hurt anyone, whether human or animal.
It really hurts and grieves my heart and spirit when this world still sees me and my Autistic community friends as a tidal wave, tsunami, catastrophic tragedy, and an epidemic, that should be cured and eradicated and fixed with abusive and dangerous therapies like ABA and bleach enemas.

Please accept me and my friends, please get to know us, and i mean get to really know us, and then you will see that we are not tragedies, you will see our true human spirit, our love, our creativity, our sense of humor, and our personhood and value, as the human beings we are.

Thank you. 

Tuesday, April 7, 2015

How My Days And Nights Go Lately

Ever since i sprained my leg tumor in the ambulance on the morning of Feb. 16th, when they forced it behind my knee, to where i had to ride all the way to the hospital with that rock sitting right underneath my knee, so that i would not fall off the thin gurney, it has not been the same. Yes, the huge pains are gone, and i can walk more around the house without pain, and ride in Connie's (my caregiver and friend) car without pain again, but now, i once again have one of those nice lymphedema ulcers on the very bottom of my "pet rock". I hate this rock. I don't know what ever i did wrong to deserve to have this develop on my left inner thigh, because i can no longer drive or get in and out of my tub shower because of it. It has impacted me mentally too. It has impacted me by making my jail worse than it used to ever be.

My "pet rock" is more like a huge ball and chain around my left inner thigh.

I have been in alot of very dark depressions since Feb. 16th too, and these depressions are getting worse too. Along with these depressions come panic attacks of anxiety and worry that things are just going to keep getting worse.....that there is never going to be a way out for me, because somehow i am being punished for something i did wrong in my past. Punished for my whole life on this earth.
So is the loneliness.....it too, is getting worse.
I have stopped watching the YouTube vidoes i used to so enjoy every night.....not because i don't want to watch them anymore, but because many of them don't play right on my computer in fullscreen mode anymore. I am trying to get someone to comne look at my computer to see what is going on. I really miss watching my YouTube videos. 
So, i have been watching alot more TV. And sleeping alot more too...when i am able to, or my body let me, go on my long sleeping spells, that really helps me to get through these long lonely days and even longer nights of being housebound, stuck behind these same four walls, looking at mostly concrete, tin buildings, and asphalt.
My only human contacts are my daily phone conversations with my mother who moved up to an inner mountains state in April of 1996, along with two of my three brothers, and two of my three sisters, and all of their families.
I also have Connie who comes six afternoons and early evenings a week to help take care of me.
And i have all of you, my sweet angels on facebook...all ofyou here on Facebook, Connie, my mom, and two nice sisters are all my sweet angel friends. 
But when i can't be online, and Connie is not here......i literally ache to the very pit of my soul due to the dark pit of loneliness deep within me.
As i stated before, the whole entire rest of my family who always treated me like i was a separate entity growing up, still shun and ignore me.
Yes, my eldest brother prays for me several times a day, and he also has lots and lots of Catholic Masses said for me.
But he is too nervous to handle talking to me, so he chooses not to. The rest.....all seem to hate me because i choose to be so vocal about my life.
My mom is a friend and ally, and she helps me as much as she is able to. So do my two nice sisters.
But the rest.....are now like total strangers to me, and it is not my fault, because i have tried countless times to reach out to all of them, to break the ice and make them understand me and accept me. I need to add that my mom and two nice sisters all have kind loving hearts.
I know growing up i wasn't a nice person. I did things and said things that were not cool, and i did my share of not treating people nice like i wanted to be treated. I guess you can say, it was partly because hurt people do end up often hurting others, and as hard as tried, some of what my family thought, became my fears too for awhile growing up.
Even so, i have fought all of my life not to be like my father, three brothers and my one mean sister.
I have still alwaya fought to do what is just and right by people.
I still, even so, had much to repent to my God for though, and i did 7 years ago, even the generational things that i know in my spirit were soul ties to some very bad peole in my ancestory that needed to be cut by me.
The bible says that God doesn't make mistakes......but i do feel that he/she/they did when they plopped me into the family i was borne into. I don't feel that way about my mom, or two nice sisters, or my one sister's daughter. But i have come to feel that way about the rest of them.
I don't say this to be mean, i say it because it's the truth. My heart is not mean like that. I was never ever meant to be a person with a mean heart.
And i apologize and repent for all who i have ever hurt in my life.
Still.....these nights are so long, and so are my days when i can't sleep. I spend my nights and days dreaming of winning the lottery so i can finally move to a house that is a home and a sanctuary to me, a place that is quiet, and beautiful, with lots of grass, trees, and flowers. Then i can move my mom and one nice sister back down here to this area. Then i can finally work on getting the surgery done on my leg, free of the fear of losing Connie and my housing assistance in the process.
I spend my long nights looking forward to when Connie will be back to help me, and talk and laugh and joke with me. I try to sleep all i can to fill in all of my alone time though, or watch TV, and i still come on Facebook too.
But my loneliness is growing deeper, as is the despair i feel that things are going to get worse, not better. That i will be forced to revisit past enemies who hurt me so badly (by running into them when out and about, for example).
So yeah.....this is what was on my heart to write tonight.
I love being Autistic. But i hate all the misjudgement, misunderstanding, and hate towards us. I hate this loneliness. 
I write because i want my family to stop shunning me and being afraid to connect with me....and i want everyone to stop listening to hate groups like A$....and start opening your hearts, to listen to our stories, and to get to know us and become our friends. That is what i want, for me, and for all of my Autistic Community friends.


Monday, April 6, 2015

For Those Of You Who Don’t Yet Know Me~~A Re-Write

Hi, my name is Melissa, and i am a middle aged Autistic adult who has been on Facebook since January 2008. I will be 55 in May. I am good friends with many of you. But many of you still don’t know me.

For the past 4 years, i have been working on writing my life story as an Autistic who grew up in a very large family who was sadly, and i hate to say it but it’s true, most of my family were both racist, conservative, and they were also intolerant of  LBGTQ and disabled people.
Yes, i said all of the above, and i can back it all up with experience after experience of seeing some of them etch swastikas into their PeeChee folders, going to my brother's house for Christmas after Christmas Eve, and hearing him, his wife's family, and one of my nephews all refer to Blacks as the N word, President Obama as "The n***** in the White House", Hispanics refered to as spics and wetbacks, seeing the confederate flag hugely big as life displayed in their front sitting room as i came into their house, and them always having Fox News on the TV. In addition, growing up, i would hear awful racial and anti-Semetic jokes and slurs all the time out of the mouths of most of my family. In addition, all of the disabled people they would see at school, would also go up on their hate table to also be made fun of so cruelly by them.
They treated me the same way.
Again, it was not all of my family, but it was, and is, most of them.
Out of all of them, my mother and two of my sisters have always been my friends and allies, but i have always been shunned, ignored by all three of my brothers, and my other sister, and all of my nieces and nephews too. And my brothers’ spouses too. And they still all shun me. And it really bothers me.
If they would only read my blogs with an open mind, and a softened heart, they would finally see the truth. But i actually think my one sister would very much love to find a way to sue me for my blogs. Even though i am not using real names and trying to preserve as much of their anonymity.
I am not here to slam my family, i never was….. i am here to tell my story, and to get the help and support i have never had.
I am here to make them aware of how deeply i hurt and how deeply it affected me to grow up Melissa Fields because of the way they treated me, teased and taunted me, and made me feel always so cut off, always ostrascized, always separate from them.....and like i was "less-than" they were, because of my disabilities.
I still live in the small cottage that i have lived in for the past 23 years, the small cottage that badly needs repairs and to be retrofitted so that it is disabled accessible for me, as i am physically disabled now as well.
I would ideally love to move, as this street presents serious sensory issues to me because of the loud constant hot rodding and bullying i still get to this very day, from employees in an auto shop and a warehouse, which are both across from my tiny cottage. I have also developed a huge lymphedema leg tumor on the inside of my left inner thigh that has really hampered my mobility alot in the past three years. It needs to be surgically removed, but to do so, i would have to relocate to either the San Francisco Bay Area or the Los Angeles area, as they still don’t do these kinds of surgeries here in Santa Maria where i live.
This means me having to give up having Connie as my caregiver who i have come to really love and trust with my life, and giving up my ability to rent from my mother via section 8 when i return, two things that frighten me to pieces.
I am in pain on all levels now though…..
physically due to my legs, because of the lymphedema and now, on top of that, the leg tumor, which is like a 50 pound rock that seems like it has been soldered onto my left inner thigh, attached at my knee,
and because i am profoundly alone and lonely when my caregiver isn’t here to help me the six days a week she is here. She comes each afternoon/evening, for six days a week to help me.
Because all of my real friends are online, on Facebook.
Because i want so much for Connie to be here more than she is able to be, as she, also is my friend too.
Because my mother and two nice sisters live in other states, far away from me……one sister lives in Arizona, and the other sister lives in the same state as my mom does.
Because the rest of my family have coldly cut me off, it seems, for good now.
Because they still don’t get me, and why i am online saying the things i say.
Because i hurt so deep inside, i want to scream till i have no voice left, and cry deep raging rivers of the hurt i feel due to all of the rejections i have had to endure. And that i still endure.
I have deep abandonment issues due to all of the caregivers who have abused, exploited and abandoned me, and so many others who have done the same. The hurt from it all is indescribable.

My life story is finished for the most part. I wrote it via Microsoft Word, as a PDF document. I would like to get in and tweak it more, as there are things i know i left out. But maybe i will write one more, or two or several more books. I don’t know. It all depends on if my first book is even successful. But the thing of it is this: i have no idea how to go about publishing a book, i don’t even have a cover designed for it…..and yes, i do love to draw. But i am completely inexperienced as to how to get into the publishing market. i do have two blogs, one on WordPress and one on Blogger, but i still have much to learn about including pictures and links on them. I only got my first computer ever in December 2007.

I know many of you have also misunderstood me as well, and have not wanted to be my friends, because i come off so aggressive and even like i am whining. If you all knew what i have had to endure, what i still have to endure, and would read my blogs, befriend and get to know me, you would all then understand my life experience. I am not just here to tell my story and get help for myself anymore, i am here also because i have come to grow attached to and love all of you who are my friends, and i have come to understand so much more about Autism and the urgent need for the whole entire world, people, news media, entertainment world, etc., to be educated about Autism Acceptance, and about Us as the real breathing and valuable and beautiful human beings we are. We matter. We have a voice. We are NOT tragedies and burdens and monsters. We are NOT a “Behavior Problem” or a tsunami. Auti$m $peak$ has had the microphone long enough. It is OUR time to tell OUR stories, so the world will wake up and see the TRUTH about us. Auti$m $peak$ are WRONG, and they hate us. Which is why i am here amongst all of my Neurotribe. Yes, i am here to to get help. But i am here for my Neurotribe, my Autistic Community, too!!!

Wednesday, April 1, 2015

An Open Letter To Comcast & To Everyone About Me

An Autistic learning post about me: I realize that when i am right smack dab in the middle of one of my panic attacks, that my fear can often sound like anger----and when i got on the phone the other afternoon to find out why my internet went out, that i did indeed, sound aggressive and angry. 
It was purely unintentional. 
I can sound angry, even when i am scared shitless, which i get when things that i hold dear and depend on and count on, like my internet, suddenly doesn't work----which leaves me alone and cut off inside of a house that i do not consider my home, but that i consider to be a house of horrors and real life nightmares, that i consider to my a torture chamber, with my enemies, the bullies all over the street outside of it, yes, still.
There are still bullies here.
Yes, there ARE still employees of the auto shop who still like to mess with me and make the very loud noises that they know sends me into total painful agony meltdown mode. And there are still a few bullies who also like to mess with me and do the same things to me, who work in the back of a warehouse that is also right across from my house.
I am a good person with a good kind heart who would never ever intentionally hurt anyone, but i still lack alot of social and coping skills-----and i do my best with the tools i DO have available to me. There are just some things that i either can't control, or have a very hard time controlling. I **don't** know if i can ever overcome this.
But please know that i do try my best never to be an upset to anyone. it is just hard for me because of my neurological makeup, and the things that trigger me.
When i am triggered and go into meltdown mode because of that, my level of functionality slows down.
Things like too much hot weather can do that to me too.
Please understand and have patience with me.

Sunday, March 29, 2015

My Comcast Rant Of March 2015

Does Comcast care about its customers?
No, i do not think they do anymore.
Is Comcast really trying to change its customer service for the better like they say they are?
No, not when it has now been made even more impossible to reach a live customer service representative who speaks clearly to you so you can understand them, and who knows what they are doing, and is not loudly rude and does not cut you off mid-call.
No one at Comcast seems to answer people's complaints anymore. Or resolve them.
On their Facebook page, i have now observed that customer complaints get ignored there too now. 
For a disabled person such as myself who is mostly confined to my house, and who depends on my internet because i am alone and lonely, because most of my support network, my disabled community, my friends are online, because i need to get important messages from my caregiver when she is running late or will be late, it presents a very real state of raw fear and panic when my internet goes down and i am unable to get a live person to talk to anymore.
I am Autistic, and losing my internet puts me in such a panic that i have meltdowns until i see that it is fixed.
Those meltdowns take alot of my energy.
Especially when i am unable to get a live person i can talk to who will tell me what is going on, and when it will be restored.
But does Comcast care? No. They do not seem to anymore.
I am no longer accomodated by them like i was for awhile. For awhile, in 2010, local techs would call to let me know when the internet was going to be off, and they would let me know when it would be back on, so at least i would KNOW.
Instead, i am labeled a nuisance caller, and dismissed now.
I don't call them everyday. But i do call them when my internet is out, and all i get are automated messages.
The phone number for my Gateway Wireless Tech Support keeps getting changed. ALL the time now. It just got changed again. This time? I now do not know what that phone number is. That throws me into an even more panic.
I am not slandering Comcast. 
Just go on their Facebook page and click on Posts By Others, and you will see it is rife with complaints. 
Just Google Comcast Customer Complaints on Google and YouTube and see the hundreds of thousands of negative articles and videos about them.
Google their Better Business Bureau complaints and rating with BBB, and you will see numerous complaints and a rating that is very low, there too.
I sincerely can hardly wait until i can get a way to move North to ther next county, so that i can have Charter for my high speed internet, because in San Luis Obispo County, CA, Charter has a very good reputation for providing its customers with sincerely good customer service. I don't hear or see as many complaints about Charter or Cox Cable, as i do Comcast. But Charter and Cox are not partly owned by NBC/Universal and General Electric. Since Comcast has merged with these other companies, they seem to ignore us now. 
I truly wish i had an alternative for unlimited high speed internet.
I do not as long as i live in Santa Maria CA.I do not feel that is right or fair.