Thursday, September 26, 2013

THE DARK AND HONEST TRUTH

At age 53 and a half i feel as though i am 
a prisoner who is on death row now,
waiting to die...my only "crime" being that i am a special needs adult
I am still living trapped in a town made up of mostly closed minds and hearts
I still live on an industrial street where most of my neighbors are cruel mean bullies to me
a redneck town where i have grown up alone and lonely,
where i have always had very few friends
where i have always even been shunned by most of my family and relatives
where i seem to have a bad and dark reputation as the town leper
due to all of the souls who don't understand
all the souls who haven't understood me and my plight
as someone who has different disabilities
i sadly can't go to any of the churches either
because they all seem to know me there too
in this town, everybody knows everybody else,
that is the honest truth
and no one ever, ever, ever, forgets any mistakes one makes in life
in this town, your mistakes seem to brand you for life
i'm known as that crazy girl and crazy lady
who has always had meltdowns and who has always caused problems
everywhere i have gone,
the crazy lady who has always screamed and yelled and flapped her hands
so whenever i reach out for help, and they hear it's me, they run far away
life has passed me by because
few have given me the chance to prove myself as the real person i am
all of the places i have always so longed to go,
still remain elusive and unreachable pipe dreams to me
even so, i still hold out the hope that someday i will still
have the chance, i will still be able to go
and see all these places

New England, New York City, New York state,
Eastern Pennsylvania, Washington DC,
Upper Michigan, and the Pacific Northwest too
I long to see the Northern Lights, and the sun rise over the Atlantic Ocean 
but no, now my physical health has now declined, and now i am stuck in my home and must have personal caregivers come help me
for my very survival
i have even stopped driving again
i know exactly why i cannot fit in at any of the churches or clubs here
why i cannot make friends here
why i cannot get the help and services i need
is because sadly, all of the ones who 
have called themselves enemies 
who do not like me, have blacklisted me
everyone from several of my neighbors here
the ones in the auto shop
to people i grew up with who didn't like me
all because very few people understand and get a very unique Autistic lady
who does have a heart
who does have a soul
who does have compassion
who does care about the world i live in
I am a very unique Autistic soul who just wants to be accepted and loved
who just wants one last chance to achieve her dreams before she dies
who is just trying to get through this life as best as she can.
I am not a monster....please open your hearts to me and be my friends.
Please listen when i speak and tell my story.
Let me have the chance to tell you all my story.

Saturday, September 21, 2013

Note To All Of My Prospective Caregivers

This post was originally written by me on September 10, 2013.....

Hello, my name is Melissa, and i am an Autistic adult. I am asking you into my home because there are many things i cannot do for myself anymore either because of my physical limitations or because my sensory issues make doing these things too difficult or impossible. It is not that i mean to be demanding or a diva, it is that my sensory issues are very real and i am in all levels of pain and agony when people don't listen to me and respect my boundaries and space. It is because my brain works differently than yours does....i process things much differently than you...so i need lots and lots of patience and understanding. 

For all who do not know, Autism is a neurological disorder. It is not a virus or disease that can be caught...nor is it something anyone can scold me for, or yell away or belittle me for. Nor is it something to laugh at and make fun of. Autism cannot be cured or fixed, and i do not desire to be cured or fixed. Neither do any of my friends. I am proud to call myself Autistic.

I have a great deal of rituals, quirks, and routines......please learn what my rituals, routines and quirks are and try to be respectful and mindful of these things.
Again, i need lots in the way of patience, so please also be patient with me.
You do not have to talk loudly when in my prescence; i hear just fine, and i am intelligent, and i even have a sense of humor, and i also even have a heart and compassion and empathy for others, just like neurotypical (normal) people do.
I am not mean, and i am not a diva, nor do i set out to be those things, but respect for my boundaries and space is a must if you work for me, because like i said before, with Autism, a person's brain is wired differently, and the things you may be able to handle, we cannot handle.
Our brains process things alot differently than you, so please be mindful of that.  
If you have questions, please feel free to ask me, and then give me the time to explain. Please do not try to rush me, as this will overwhelm me, and i will meltdown.
If i do get upset, say things that reaffirm and reassure me, and that make me fel validated. If you say things like "Oh, well, i'm sorry, but sometimes i'm gonna do things you don't like. You just have to get over it, or deal with it." Those kinds of things are rude, dismissive, and insensitive, and will put me on guard with you in a heartbeat. I am easily sared off by rough talk, and by people not being sensitive to me.
Please also try to not talk to me machine-gun fast, as i only process so much at one time. Please try to talk plainly and clearly to me...if you talk softly or mumble, and meld all your words together, i can't hear or process what you are saying, and that is also a trigger for me.

Please know that i see things differently than you do. 
I hear things more loudly....like certain tones, noises, tones of voice.
I am hyper-sensitive to alot of things...like certain textures of food, clothing, the way my spoons are put in the utensil drawer, etc.
I like my house to be neat and orderly. If things go too much out of place or are done messily and sloppily, it throws me into a state of chaos and tells me you don't respect me and my home.
If you use my bathroom, please leave it neat and clean.
When you clean, please don't leave water spots, or stains or streaks.
If you cook, please wash all of my dishes and utensils with hot water and dish soap.
And leave the stove and counters clean.
Please do not hate on my music or what i watch on TV, or read, or make fun of it.
I see things more clearly.
I smell things more strongly.
I feel things you don't.
I taste things differently.
I respond very well to hugs, in fact, i love a nice warm hug, but not kisses, i cannot stand kisses or to be touched on the face. I like to have my personal body space, so please don't stand or hover over me....or touch me on the lower arms or tap me on my leg....unless you are bathing me, then it is okay.
When you shop for me, i like certain brands, and for good reason, because i know these brands last long, and work for me the best.
I can tell if you don't like me, or want to be here. So please give me your full attention when you are here. 
Please do not talk on your cell phone or be on the internet while here. Because that will tell me you are not all here for me.
You can use your phone for important stuff, but chit-chatting with family and friends is off limits. Again, i want your all...or i will feel like i am less-than.
And by all means, if you need to take a break, or time-out, i will understand.

Please know that i do yell when there is street noise. Loud shrill sirens really send me over the edge, as do louder than loud motorcycles, and loud souped-up cars, trucks, etc......and loud car horns....when people lay on their horns. I live across from an auto shop where the employees know my situation, and they bully me on an almost daily basis.

Thank you for taking the time to read this. I just need to know you want to work with me, and i hope you will be with me for a long time. Peace, love, light, and blessings.

I Wish People Would Understand........

 The below post was originally written by me on May 23, 2013.....

I wish people would understand what autism means......what autism really means......

It means we cannot march at a normal person'e beat
it means that we are in our own worlds, and that we go at our own pace in life
it means that our brains are wired differently than yours is
it means that most people, because they don't or won't understand,
they will often misjudge us, make false assumptions about us,
come down on us so harshly
then they turn on us and walk off on us
alot of people think they can exploit and abuse us both emotionally and financially, and they do that too
some people will even go to that next level and hurt and abuse us physically
society cannot fix or cure us
they cannot scold us and yell at us and scream at us
alot of people will exclude us, ignore us, and leave us out of activities and parties and all other fun events
alot of people assume that we don't have a heart, that we have no empathy
that we have no personality or sense of humor
and they are wrong
we do have a heart 
we do have feelings
we hurt like you hurt
especially when you come at us in such a cruel and harsh manner
each time someone i care about turns against me and gives up on me
or comes at me wanting to cure and fix me
that is oppression
it is as if someone has taken all the colors of the rainbow away from me
it is as if someone has taken the pen from my hand to write with
it is as if my mouth is being sewn tightly shut
and my very laughter and joy
and the very sun is being turned off
it is as if you have crumpled a rose that is trying to bloom in its own way
i feel so alone
i am lonely
all the time
crying to get out
but you all want me to do it your way, and i cannot
does this make me a hopeless case?
no, it just means i do these things a different way
i want to bloom
but you have to let me bloom the only way i know how to bloom
using the tools i have available to me
accept me, don't try to cure me or fix me
and don't turn against me when i do it differently or too slowly
when you ask, let me explain and really listen
autism is a complex thing, but it is not a bad thing unless you make it a bad thing
i want to learn and grow
but i need friends and support who are here for me
or i will eventually just give up forever.......

Thank you, to all of my friends who do care about me and accept me and who do get me.
Thank you all for being like my second family. I wish i could do better than i am.....
But i do love all of you, each and every one of you, with all of my heart and soul.......

The Way Churches Should Be Treating Poor & Disabled People

This piece was originally written by me, in July, two months ago.

This is just an opinion piece.....thoughts of mine that are very much on my heart tonight. As A Christian Believer myself, i am not what you would call the norm: I am what is called a liberal Christian...i am Pro-Choice, i love President Obama, and think he is doing, and trying to do, a stellar job as our country's President. I also believe in a Democratic Socialistic society, where all can have a decent life, not just those who are rich and privileged. I also believe that no state or federal government should make any laws inhibiting the free will and rights of the human population. I also believe strongly in Lesbian, Gay, Bisexual, and Transgender rights, i am ecstatic that LGBT couples are now free to get married and have the same rights as a man and woman who marry, and that more and more states are approving this much needed freedom.

I am mainly speaking from my own personal experiences that have mostly been very negative and traumatic that i have had with churches over the years, I have visited many, from growing up Roman Catholic, and being forced to ride to 8:00 AM Sunday Mass in the freezing cold every Sunday morning whether i liked it or not, to growing up and attending and being baptized by immersion in a Southern Baptist church, where they, on a regular basis, told people which elected officials and political measures to vote for and to not vote for. They also frowned upon rock music, dancing, playing cards, and people not being in church everytime the doors were open, no ifs ands or buts. To me, telling people what to do, and who to vote for, is wrong. Let us decide for ourselves.

I have also had experiences with both Charismatic and Pentecostal churches....in the Charismatic ones, there is much emphasis on being baptized in the Holy Spirit, where one regularly prays and speaks in tongues. I did feel the Holy Spirit alot in those churches, but i never spoke in tongues, and i still don't, to this day. Even so, i sometimes will feel the Holy Spirit very strongly when i pray. Pentecostal churches take it many steps further: many who attend a Pentecostal church, get totally out of control, in my opinion. In many of those churches, members are coerced into paying ten percent of their income, and giving even above and beyond of their income, resources and time....even when they don't have it to give. In addition, in these type of churches, the men wear short hair, and suits and ties, and the women wear veils, wear their hair long, down to the floor, even, and they wear skirts and dresses 24/7. No pants whatsoever. I feel way uncomfortable in both Charismatic and Pentecostal churches, because they like to preach at, control, cure and fix people. if you can't be cured, fixed, controlled and hate being preached at....they automatically think you are headed on the fast track to hell!!

Then there are regular churches, churches where i have actually enjoyed myself, because they are so laid back; they love you as you are, the worship and praise music is rockin', and they have lots of cool activities. Those are my favorite churches to go to, because they don't try to fix and cure me. I also like churches that have evening services, because i am so not a morning person, and like the option of being able to go to an evening service.

But one thing i have noticed is that many who profess to be Christian, seem to have a holier than thou attitude, they like to judge, condemn, and make assumptions about a person, and in many churches, there are often cliques, cliques, and more cliques. Cliques that exclude and ignore any "outsiders'. If there are programs for disabled/special needs people, they are segregated, and not often invited to any of the regular church functions. Most of the church's parishioners will shun you if you are different, sadly, but true.

In my opinion, what would Jesus actually think if He came back down to earth and saw the way churches treat our poor, disabled, and special needs population? I realize some who read this are of other faiths, religions, and on other spiritual planes. Some choose not to believe. All of this....is okay,....and it SHOULD be okay. We all share the same world and universe. We all need to freaking get along. 

For it is all about LOVE...and love means treating, accepting, and loving others as you would want to be treated, accepted, and loved.

To me, all religions should encourage a person's freedom, talents, and creativity, not inhibit those things. 

No religion has the right to tell a poor person who struggles just to be able to to feed their children and pay their rent and utilities and car payment on time, to first give that church ten percent of their money, especially when it means that person then has to go to family, friends, and others to get the money for their rent, food and utilities. Just so they can give to that church. And to use guilt tactics as a way to get one to give. I, as a poor person, don't have ten percent of my money to give to a church. I give what i can though. But not till it hurts me and i can't provide for myself.

No church, if they want to show the love of God, has the right to exclude and segregate those who are disabled from their main activities, and make those souls sit by themselves, with no one to talk to. Jesus wouldn't exclude anyone. So we as a human race need to stop excluding others just because they are different from you. Nor does a church have the right to devalue, dehumanize, disempower, or otherwise discriminate and invalidate those with disabilities and special needs. When people in a church tell a disabled/special needs person that they can pray that person's autism away, that is VERY dismissive and devalues us as the human beings we are.

I don't care how a person dresses or wears their hair....if they choose to wear makeup, choose to have piercings, and tattoos, or they choose to wear a veil....i don't care if a person chooses to pray to Allah, or they choose not to believe....it all should be that person's choice. And that person's choice alone. Period. But when a church has so much control over someone that they end up not paying the rent, and putting much needed food on the table, or they are told who they should vote for, or told they can't listen to certain music, or are made to feel devalued for who they are, then that, to me, is a church to run as far away from you can get. Because that's how cults are started. When a church starts controlling its congregation and taking their freedoms away.

This is why i choose to call myself spiritual, and not religious. This is why i choose not to go to church at this time. It isn't about how much we tithe, or what prayers we chant....it's all about L-O-V-E......and love that is unconditional.....love which lets a person still retain their freedom and dignity and personhood. Our freedom to think, live, and be.


Sunday, March 17, 2013

About My Posts and Writings--About Me


I am a person who takes things very personally. I am a very sensitive person.
This is how i have been my whole life.
When things happen in my life that are huge and monumental, especially when they involve huge hurts, it takes time for my brain, body, and soul to process and fully get over it. It takes Alot of time.

Sometimes years.

I have good days when i think i am okay, but then i have those bad days, where the memories of a certain hurt will flood me, and i am brought to my knees, grieving all over again.

I am also autistic, and i have grown to be very proud of my autism. I consider my autism to be a blessing, a different operating system of sorts.....i do not consider myself to be a research project or a blue puzzle piece or a disease, nor am i an epidemic, or a burden or a tsunami. Nor do i consider myself someone who is in need of a fix or cure. I did not always feel this way. Before Facebook, and especially when i was growing up, i wanted to be normal. I grew up thinking that if i was just normal, i would be accepted by others, i would "belong"----i would fit in. I was even into Autism Speaks for awhile---because i had the mistaken idea that they were for me. But something happened to me after coming onto Facebook and posting my feelings on, of all things, an Autism Speaks comment thread. It was through that comment thread, that i immediately began to meet a huge community of awesome friends, many of whom are also who are also on the autism spectrum. Quickly, my mindset changed. Because i allowed myself to be educated...rather, re-educated.

For it is real human beings who i have met,
people who have real personalities,
people who have a heart,
people who have a sense of humor,
people who are married,
some who go to college,
many who have children,
some who have jobs,
some who also go to Washington to speak to Congress about the real issues we who are autistic face.
The people i have met, are people from all ends of the autism spectrum, who do not fit the stereotypical view of what an autistic person "should" be like. I have been educated as to the very real issues we still face today.....one of the biggest issues being the stigma that still runs rampant among the mindsets of even those who are autism parents and advocates, about us. There are even a very small number of autistics who feel this way.


We are NOT blue puzzle pieces. We are human beings with dreams and goals just like all of you in the neurotypical world.

There are still those who want to come in and get mad and get right in our faces and yell at us and scold us when we have bad days, and have meltdowns....they want to come in and try to fix us when we are right smack dab in the middle of a meltdown, treating our meltdowns just as if we are a spoiled kid throwing a temper tantrum.

NO.

THIS IS THE WRONG WAY TO APPROACH US WHEN WE ARE HAVING A MELTDOWN. A MELTDOWN IS NOT A TEMPER TANTRUM.

A MELTDOWN IS AS DIFFERENT AS DAY IS TO NIGHT FROM A TEMPER TANTRUM.

A temper tantrum happens when a kid wants a toy or candy, and the parent says no, and the kid starts screaming and crying, as a way to manipulate the parent into relenting and saying yes.


A temper tantrum happens when a kid wants a toy or candy, and the parent says no, and the kid starts screaming and crying, as a way to manipulate the parent into relenting and saying yes.

A meltdown happens when an autistic person's senses become overloaded. The whole room starts to spin and it is as if there is a bombardment of wild colors, and different noises clashing, all coming at me in haphazard fashion.....it is as if i am being poked hard all over, as i am being spun all around too fast, and i can actually feel the hot breath of you, the neurotypical, yelling at me in the middle of it all, and then i spiral down and shut down even further.

Please don't yell at me and scold me when i am having a meltdown. It will make it even worse. I promise you.

It will make my meltdown worse.

One of the ways i cope with anything that is troubling me, is to vent by posting and writing about it. I do this to better understand and process through it. I do it because it is the only way i know of how to cope with it. I cannot cope any other way. And i know my friends will get what i am feeling, and not scold and chastise me for it.

God has given me the gift of being able to write.


Please don't shut me up when i want to talk and need to talk. Please don't stop me from writing about how i feel. I do it also to educate...to make others understand. To make the NT world understand.

The note that i wrote last night, was in NO way meant to convey anything other than where i am mentally and emotionally at right now...it wasn't meant to say that i have turned my back on God, for i have NOT turned my back on God....but guess what? I am still not over what that ex-friend did to me last year. And right now, certain Scriptures, certain Christian rock songs, etc, all bring back to me the painful memories of what that ex friend did to me. That whole experience of how he turned on me, still haunts me and impacts my life so greatly one year later, that i am still sometimes brought right to my very knees by it. I still have very profound and painful nightmares about that ex-friend.

I still very much need to vent and talk about it.

It helps me to be able to have that freedom to come here to Facebook and talk and vent about the things that traumatize me...the thing with (Roger---not his real name) shook me to my very core. He may as well of blasted me with a cannon. Because what he did, was like a rape of my very self essteem, safety, security, and who i am as a person......

I had another dream about him just this morning. He will not leave me alone in my dreams. You can talk to me and lecture me till i am blue in the face, but i am not yet over what he did to me.....no amount of you teling me to get over this, will make it happen.....yes, it will happen in time.....but you cannot force it to happen by your lectures and self help strategies and self help books.

Just as you cannot go to a rosebush and force open the buds to force them to bloom now....

I am still in the grieving process over what was done to me last year, 
And then on top of my ex-friend turning on me, i had to endure more emotional agony from the caregiver i had from May through October of last year, when she too began to take her bad moods out on me, yell at me, belittle me, and tell me i was stupid, and that i needed to just take my autism off and be normal.....

My family did all of this to me growing up, and this still keeps happening, and brings my childhod right back up to me....

It seems that the only real support i get, is through all of my Facebook friends who DO get this...and ME!!

I am also very head shy, and when you yell at me....i feel like i am being slapped and hit right on my head!!!!!!!

I cannot stand it when people yell at me, so please stop....please....or one of these days i will make good on my threat to hop a bus to Rhode Island, and then i will  be in a safe place where i am surrounded by people who actually get and accept autism!!!!!

My autism is not going to go away!!!!!!! Neither is the voice i have to express what this is like to be continually yelled at, shut down, shut up, squelched, thrown away, and muzzled by you, the NT world, who still make it so hard to be Autistically Me. To just be Me. Period.

Please don't raise and shake your index finger and talk down to me anymore.

I am not a child.

Please don't preface your statements with "You need to do this"
"There's no need to be upset"
"There's no need to feel like this", anymore.

Please don't tell me no, and give me no options to work with.
Please don't hand me ultimatums. I cannot work with ultimatums.

Instead, ask me how i want things to be done...ask me how before you jump in and assume i want things a certain way. I have rituals, and want and have to have my things to be a certain way.

Please respect that. Please respect the world, the bubble that i am in. It is my world. I am inviting you in because i trust you. If that trust is broken, my world is broken.

I want to be validated, not dismissed, and you are dismissing me when you talk at me and talk over me in that manner.

I want to die because of how i keep getting treated by all of you, in the NT world....

Please stop.....
Please stop shunning me
Please include me in your conversations....in your fun events.
Please don't talk over and interrupt me when i am talking anymore
Please don't tell me how i should and should not feel anymore--i process things differently and in my own way...and at my own pace.

I just want to know it is okay to Be Me.....
And please don;t chastise me and be angry that i wrote this note.....
I love you all, my friends. God bless you.






Please Listen--I Am Autistic--I Am Not Just Hurting--I Am In Pieces!!


I am autistic....i am not a criminal
I am autistic....and i am so lonely and alone
I feel so utterly cold and cut off
Please do not belittle me
Please do not discount my feelings
Please do not discount what i say
Please do not blow me off and ignore me
Please do not judge me and make assumptions of me
Please do not stereotype me, i have a personality, i do care, i do have a sense of humor
Please do not get fed up, walk off, and throw me away
Just because i am too difficult  and just not convenient for you to be friends with
Please don't feel free to talk down to me, yell at me, and call me names
Please don't feel that you can threaten me and make me feel threatened
Please don't try to shut me down, shut down on me, or shut me up
Please don't laugh at me and make fun of me like i am a joke
Please stop deliberately making noise just to hear my meltdown
Please stop bullying me and tormenting me
I am NOT this way by choice
I was born this way
My autism is me, this is who i am
And who i will be till the day i die
I am once again broken into a million pieces
because yet another person has come into ly life and has promised
never to turn against me, never to give up on me
And yet she has done just that
Just as my other ex-friend and other caregivers did
These things not only hurt, they take me down to the very floor
And then it gets all that much harder to trust yet again
I am scared to death that my new caregiver will also walk out on me
I am scared to death that most of my family will always ignore me
I am scared to death that i will never find the right care that is autism-friendly
I am scared to death that i will never get to see New York, New England, 
All the Eastern US, and the states of Michigan and Wisconsin
I am scared i will even have my meager tiny government benefits
Cut or taken away altogether
I am scared that i will just be thrown into a home
To continue to waste away till finally i just die
Someone PLEASE help me
PLEASE......Do i even MATTER to anyone here where i live????????
Do i even MATTER to any of you here on California's golden Central Coast?????


Ask All Of Those Who Will Not Understand.....


Ask all of those who will not understand
All who discount me
and who will not listen to me
and respect me


Ask all those who shun me 
and want me to just shut up 
and to have no voice


Ask all of those who put words in my mouth 
and who won't let me speak to even defend myself
Ask all of those who accuse me of lying and imagining things
Ask all of those who say i just make a big deal out of nothing 
and that i blow things way out of proportion


Ask all of those who walk away 
and throw me in the garbage 
because i am not convenient to them