Monthly Archives: April 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.

Crime of Being Weird in Public

Alex and Ania Splain You a Thing

While we were at the DMV, a man was visibly stimming by chewing on his shirt, and readjusting it often. He was awkward and drew some attention and stares. He was also wearing an oversized shirt and shorts that made it look like he wasn’t wearing pants. The police were called.

He showed them the shorts he was wearing, but that wasn’t enough. They stayed with him while he was waiting to get his information. Throughout it all the police were drawing attention to themselves and him. Finally, tired of waiting, they got him bumped up. Then when he was done, loudly asked if anyone would give him a ride somewhere, then laughing when the people who were stuck waiting in line couldn’t.

When the police were first called to the scene, most people were pretty entertained by the idea of a man at the DMV not wearing pants. Was…

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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.

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… 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. 🙂

Guest Post – Dear Robert F. Kennedy Jr: Autism Is Not A Catastrophe

Robert F. Kennedy, i am an #ActuallyAutisticAdult who also has a blog on here. I am far from being the catastrophic tragedy you painted me as when you gave your speech in Sacramento, the capital of my home state that i live in. I hope you will please read Allison’r blog. Thank you.

The Belle Jar

Guest post by Allison Garber

Dear Robert F. Kennedy Jr:

I’ll start by thanking you for your apology for comparing Autism to the Holocaust. That was good of you, since likening my child’s existence to one of the most horrific acts of mankind was pretty brutal.

Your apology, sadly, was not directed towards my son, since you went on to say, “I struggled to find an expression to convey the catastrophic tragedy of autism which has now destroyed the lives of over 20 million children and shattered their families”.

I’d wager a guess that you struggle so hard with this because you don’t actually understand Autism. I’d also wager a guess that you don’t really care to understand Autism; instead, you prefer to believe that Autism is caused by vaccines and that Autistic people don’t have minds of their own. In fact, in your recent speech in Sacramento…

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Not on my wall… Boundaries and Entitlement

Yes, this, ALL of this!! This is why i’ve been culling my Facebook friends list. Because … lights greatly offend me!! They are there to say i have no voice and that i am wrong, less than. Get the blue lights away from me!!!

Thirty Days of Autism

Hey You - getoffofmywallLately I have seen some parents suggesting that their “Lighting it up Blue” is different – because they have their own kind of family meaning or tradition for it and do not associate it at all with Autism Speaks.

When these people hear that #LIUB is uncomfortable, and that it is considered disrespectful by many Autistic people and those who support them, they seem to defend their position by saying things like: ‘It is okay – we don’t all have to agree… we are still working toward the same goals and I am supporting my child.’

The thing is… this is a little different from being ‘not in agreement…’

For one thing this is blatantly disregarding the voices and perspectives of many, many Autistic people. In fact, not one of my Autistic friends is in favour of “Lighting it up Blue.”

Think about it… this dismissive disregard is…

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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… 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.

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.

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!!!

The truth is out there, Autism Speaks – autistic adults exist!

The truth is out there…..Autistic adults do exist….i, Melissa Fields, am an Autistic adult, and i am 54 years old….and i am so alone and lonely because most of my family to this day still do not accept me or want anything to do with me, nor do they understand why i am online telling my story. They think i am just doing it to slam them, and that is far from the reason why i am telling my story. I am telling my story so once and for all, they will understand me, and why i have hurt so deeply all of my life because of how they taunted, teased, made fun of me, and excluded me all the time. Because the hurt today is stronger than ever, because my family still refuse to acknowledge me, and accept me and accept what they did to hurt me and kill my spirit. I only go on….because of the friends i DO have, my mom, my two nice sisters, and my faith.

Light It Up True

As Suzanne Wright recently reminded us, for Autism Speaks, autism is something that only affects children and their families. Autistic children are ‘missing’, ‘gravely ill’, ‘stolen’.

As a friend recently wrote:

On the entire [Autism Speaks] “Autism Acceptance” page, here are all the phrases that refer to autistic people:

– Mother with Two Sons on the Autism Spectrum
– one of her sons, Rubin, who is on the autism spectrum
– her son Max who has autism
– Youth with Autism
– young adults with autism
– individuals affected by autism
– individuals with autism spectrum disorder (ASD)
– children with autism
– students with an autism spectrum disorder (ASD)
– children with autism…children with autism [twice in same paragraph]

The unwavering message of Autism Speaks is that there is no such thing as an autistic person—that there are only normal children who have been diseased with…

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This is how it is for me. Autism, which is a neurological disability that one is born with, makes so many things that an NT person takes for granted…..the ability to be able to ignore teasing and tauntings, the ability to cope when there are so many words coming at me, or too much noise, and so on…..difficult if not impossible for those of us who are neurologically wired differently. Please understand this. We lose our words. Other words come out that we don;’t mean to say. We shut down. we meltdown. Please understand. Autism is not a behavior issue, and when we exhibit a behavior it is because we are trying to tell you something that we are unable to communicate to you. Please understand.