Saturday, December 14, 2013
Monday, December 9, 2013
Dear Autism Speaks.....
I am an Autistic adult, and i matter.
I was born this way, i will die this way.
Being Autistic does not make me bad,
does not make me a monster.
I have a personality, thank you.
I have a sense of humor too, thank you.
I also have compassion and empathy, and i cry
just as you do.
I am not a burden, i am not the ruination of
anyone's family or anyone's lives.
I am not a research subject
I am not a tsunami.
Just because i can type and think and talk
does not mean my Autism is high functioning
and just because somone is non-verbal
does not make them anymore deaf to
what goes on around them
they can still hear, are still well aware of
everything
and this includes all that you say in front of them
so if you talk about them as if they are a burden
call them names such as retarded and stupid
and complain that you cannot go out to eat, shop, do this or that
or make remarks to the effect that they will never do this or that
remember, they can still hear and understand what you are saying
Knock it off....just freaking knock it off already!!
Stop hating us and fearing us and get to KNOW us
let us speak when we want to speak and blog
and vlog and tell our stories
listen when we go to our nation's capitol to
protest your hate and intolerance of us
all we want is to be included, accepted, and loved
as the wonderful awesome human beings we are
whether someone is low or high functioning
we ALL deserve to be treated with the same respect and dignity
that you want.
Thank you.
Saturday, December 7, 2013
Why I Hate Autism Speaks
My personal views on an organization that never helped me when i reached out to them in early 2008. I didn't know better and felt i could turn to them. I had written a blog about my experiences as an Autistic adult early that year, to see if they would help me to find friends, because i just needed some friends who would get me, and accept me, friends that i could hang out with and do things with, and i needed support in my endeavor to try to move from the neighborhood i live in, because i am, to this very day, being bullied by several employees of a few of the nearby auto businesses that are to the East and across from my house.. Litle did i know back then, the scope of Autism Speaks' negative, hateful, and very hurtful attitudes towards those of us who are Autistic. Back in 2008, i was still trying to better understand myself, and just wanted to try to find support. They published my blog, alright, but they never reached out to me to give me the help i was asking for. Then i came to Facebook and found all of my awesome Autistic friends, and parents of Autistic children who have all accepted me. Now i do have friends via Facebook who get me. But i still have very few local friends. And i am so very lonely because of that. And from Autism Speaks, i never got a darn thing. And then i began to read about them and see their videos which portray Autism and Autistic kids in a shockingly horrific light....not just negative, but it's like they really have a deep-seated hate for us......not only do they fund harmful research and biomedical and therapy/behavioral treatments that are also harmful, but they devote little time or money to actually helping us to be able to have real time supports that will help us to be able to live a decent life as Autistics. Instead, they want to cure us, fix us, and eradicate us....you know, the whole "Children should be seen, not heard" mentality? Insert Autistic children and adults. Yes, it seems to me that they want to erase and even murder us.
And then when they go to Washington DC and have conferences, without inviting us Autistics, and they continually won't let us speak.....you have an organizatio that, in my strong opinion, does NOT truly represent the Autistic community.
And then you have them saying that we are a crisis and a burden. That we are dumb, and even the R word.
They say that we will never have normal lives. That we will ruin the lives of our families. They seem to think it's a bad thing for us to be Autistic. That is all they want to think about.......and they still won't listen to US, the very ones they perport to represent.
Just my take.
And i, for one, feel that they need to be stopped from spreading their hateful campaign of fear, gloom and doom.
We are human beings, not blue puzzle pieces. We are alive. Very much alive. And we have ears that hear this hate.
It needs to stop.
Wednesday, November 6, 2013
The Urgent Prayers Of An Autistic Adult Who Is Wasting Away........
..........Because the system..and my community will not help me the way i need to be helped...........
Please know....this is not a pity party....this is my story.....i am disabled, i am Autistic, and i am wasting away, because so few are willing to help me.....
I just slept from about 9:30 PM last night, to just now. It is now 3:20 AM in the wee hours of the morning of Wednesday, November 6, 2013.
I have gone from having my own car and being able to drive,
being able to take therapeutic long drives all over my beautiful Central California Coastal area,
and being able to function okay enough to get by,
to where now i am losing my entire physical and emotional health and well-being.....
because there are so very few in my hometown where i live who want to help and be my friend.....
i cannot even call on my local police anymore,
because most of them have now seemed to turn against me
due to the auto shop and other nearby businesses where i live,
where there are several employees who bully and torment me on an almost daily basis,
telling them i am just a menace, a crazy lady, and a chronic complainer....
most in this town refuse to believe that i AM being bullied by these people in these nearby businesses....
i cannot get help from my local Regional Center, they also refuse to help me.....
i cannot get help from any of the senior services here either, even though i am now 53, and am in bad health......
i cannot get my local TV stations and newspapers to even listen,.....
i am utterly alone,
utterly and unbearably lonely....
and i cannot BEAR this.....ANYMORE......
i WANT to live....
i WANT to be able to once again drive, and go places, and do things again....
i WANT to be able to go to a good church of my choosing again, where i WILL belong, where i WILL fit in....
i MISS church....
i MISS the upbeat rocking worship music,
and the kind people i once knew at one of the churches i used to attend back in 2007 and 2008.....
i now have NO way to even go to a church like that again....
i also LONG to see places like Michigan, New York, and New England....
i LONG to see Milwaukee, San Francisco, the Sierras, and Yosemite, some of the few places i have visited before
because i THRIVE on being able to see the scenic beauty of the world i live in....
i THRIVE on being able to photograph these places
because i am a photographer, and i am an artist
i long to be able to just sit by the ocean, so i can listen to the waves.....
i used to do that all the time when i could still drive
because i live not too far from the ocean
i used to go up to Shell Beach and sit almost every evening
to hear the ocean and watch the sun set
this had a real calming effect on me
but now.......
i am shut in,
housebound now.....
and i fear this is never going to get better again.....
In the past two years, i had one friend who i depended on, turn viciously mean towards me, and then five abusive personal caregivers, who all turned out to truly not care about me in the end,
who took from me even more,
and so much,
some of which who actually verbally abused and yelled at me,
and all who gouged me so much for food
and money that i did used to have saved up....
i have gone from being able to easily pay all of my bills, because of help i got from one of my nice sisters, and due to the sale of my car, which i sold because of my legs
it was getting harder for me to drive anymore
to now where i am once again back to barely scraping by because of what those five caregivers took from me....
they all took from me my trust, my spirit, my joy.....
they all came on so sweet and kind in the beginning,
and then all of them turned on me,
and began taking, taking, taking, taking, till i had none to give anymore
because they felt they could get away with this because i would not fight back, i would easily give into my fear of them not doing for me if i didn't comply.....
and so they took me,
mentally,
emotionally,
as well as financially,
to where, now, i sit here broke again.....
broke, dirty and unbathed, heartbroken, and lonely.....
i am a very kind, generous, and compassionate soul,
but these caregivers all took advantage of this.
I can still to this day hear how one caregiver lost her temper, called me a stupid ass, and threatened to leave me naked in my bed to fend for myself when she gave me a bath one day.
I can still hear and feel the hot breath of another caregiver as she would often and repeatedly yell and scream at me and argue with me....
one day she took me to do my banking, and she yelled at me the whole drive down to the bank,
so badly that i broke down crying and shaking when i got into the bank,
and i had to have a family friend come get me and bring me home.
She yelled and screamed at me that day, all because she would not let me have my music in her car,
when i really needed to have my music that day,
and this caused me to have a meltdown.
That was why she yelled and screamed at me the entire time we drove down to my bank.
Then, she walked out on me two days later, leaving me to have to cancel a very important doctor's appointment that i had set up with a local general surgeon, to look into surgery on my leg tumor.
Leaving me literally stranded with NO ONE, for one whole month.
I had to have my family friend shop for me and get my mail that entire month.....i went nowhere for one whole month.....
I do know a person who could well afford to help me, who knows of my plight.
If i had this person's help, i could then get all of the help i need, and i could finally move from this awful street where i have had to live for the past 22 years amongst neighbors who to this day, still torment me by yelling at me and making loud noises with their already loud souped up cars, pickups, SUV's, hot rods, and motorcycles, louder than loud noises that they know are some of my worst triggers.....
but this person refuses to help me, even in a small way.....
most of my family also coldly ignore and shun me....
all because i dare to come on the internet to tell of my story as an Autistic adult who is wasting away.....
all because of the Autistic activism that i now do.....
Please pray hard that i get a miracle soon that will allow me to be able to better take care of myself, that will allow for me to have excellent caregivers who will be here for me, and who won't gouge me, who won't walk out on me, including KT for more hours again, because she IS an excellent caregiver, and that will allow for me to be able to move and have a car again and my freedom, and to have my health back.....i really cannot stand the way things have gotten for me....things have gotten to be sooooooo very unbearable......the worry i feel all the time, yes, even though i empowered myself Monday night and fired Ciera, i just cannot go through much more....
Of this street
and the way i am still suffering
due to seven of the nearby businesses who refuse to leave me alone.....
Of my legs being so huge and stiff and swollen all the time
that even walking is too difficult for me,
plus this God-awful basketball-sized leg tumor that is on my left inside thigh.....there just HAS to be some point where God will hear my prayers......please, in Jesus's Name!!!!! Amen!!!!
Tuesday, November 5, 2013
Notice To All Of My Caregivers
I think of all the people I know, and there are many, who drive to and from jobs 5+ days per week. They don't get paid by their employer to drive to and from work, as how a person gets to work has always been their own responsibility--never the employers.
However, understandably and being reasonable, if the employer asks the employee to run errands for them, using their own car and gas, it would only be right for the employer to pay for the gas. BUT, doing the math, errands run locally, even with a car that only gets 10 MPG, should not exceed one gallon of gas and one gallon of gas is under $5. So the employer should not have to pay more than $5 per week for one set of errands run once per day....those five days a week.
I also think about all those same people I know with jobs and the other responsibilities they have to themselves while at work. Most employers only offer a restroom and water, as is in most cases required by law. Some employers offer coffee, but that is not required by law. And, also not required by law, employers do not have to provide food or snacks or internet for their employees. Again, the latter items mentioned are the responsibility of the employee to provide for themselves.
Reflecting on all of the above, I wish to say:
Unfortunately, I'm handicapped and require the aid of a caregiver. These caregivers work in my home. My home is their workplace. I do my best to provide as congenial and pleasant a work environment as I can, but the above issues keep arising and are causing misplaced unjustified tensions between me and my caregivers.
I'm not rich. I have bills and responsibilities just like everyone else even though I do not work at a job. I cannot afford to pay more than is right and just what is owed justifiably for any errands run for me. My compassion wishes I could, but I just cannot. Doing so in the past has caused me great financial hardship and mental anguish, because of all the times I was clearly taken great advantage of, and it just cannot continue. So, please, if you come to work in my home, please bring your own sustenance and so forth. And, come in full acceptance of this understanding so there are no hard feelings. Thank you.
I forgot to mention in this that all caregivers need to know i am Autistic, and with that, comes alot of sensory issues......that i have special circumstances because i do happen to live on a street where i am being bullied by some of the employees of some of the nearby businesses....hence, why i made the YouTube videos that i made where i **AM** screaming and yelling and venting, and that my Autism does in NO way make me a monster. So, i need for my caregivers to be patient and willing to learn about me before they judge me and walk off on me and make me out to be a villain. Thank you, again.
I forgot to mention in this that all caregivers need to know i am Autistic, and with that, comes alot of sensory issues......that i have special circumstances because i do happen to live on a street where i am being bullied by some of the employees of some of the nearby businesses....hence, why i made the YouTube videos that i made where i **AM** screaming and yelling and venting, and that my Autism does in NO way make me a monster. So, i need for my caregivers to be patient and willing to learn about me before they judge me and walk off on me and make me out to be a villain. Thank you, again.
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.
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.
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