How We Treat Others DOES Matter

It is funny how when you have a disability such as Autism,

how so few people actually understand and get you. 

In fact, you quickly find out who your true friends are and aren't.

Many people you meet in public are friendly and they

seem to get it on on the surface, but then when a scene

or meltdown happens due to a sensory issue, they are outta sight, outta mind.....

they are like "bye-bye, see ya".....and you are all alone again.

You know you are a good person with a heart of gold, that you never lie, cheat or steal,

and you would give the shirt off of your back to people.

Yet.....caregivers and friends....routinely walk out, turn against you

and give up on you repeatedly, because of the fact that you have meltdowns, 

the fact that you cannot go at that other person's pace,

or always be able to change and go with the flow......

heck, many of our own families even ignore and shun us!!

Many of our families even stubbornly refuse to understand,

even when it is spelled out to them that hey, this is Autism,

this is a real human being with a disorder she was born with

that she cannot help, and it cannot be fixed or cured or wished away....

or ignored away either. Many of those who give up on us and turn against us,

will even go so far as to create a case against us

so that we are victimized and villified as crazy monsters.

It gets harder and harder for me to trust people when this keeps happening.

I did nothing but try to be nice to KT, my last caregiver,

and then she began to make every excuse in the book to not come to help me....

and now i have painfully bad skin breaks all over my left leg tumor as a result of her not coming

that make it even more impossible for me to walk without excruciating pain

KT totally ignored me over Christmas....even so,

i kept reaching out to her to see when she would be back

I even sent her pretty Christmas pictures to cheer her up

because she said she was still very ill but she still continued to ignore me......

and then she suddenly turned nasty and refused to want anymore contact from me

My heart is broken....broken because i trusted this lady and now i must go on....

please people be aware of how you treat special needs/disabled/Autistic people.

We are not "less-than"...we are human beings.

And God sees what you do to us.....He sees it all.

I could never in a million years treat a vulnerable soul the way KT treated me.

Please don't do this to others.

How We Treat Others Needs To Matter-Part 2

Yeah, i slept for about three hours. I am up again for awhile. Our US government needs to take a long hard serious look at caregiver abuse in our country, and there need to be citizen-run oversight committees formed to get this stopped. IHSS needs to be funded well, so that quality people even actual CNA's can be employed as personal caregivers. More choices need to be given us as to which agencies we can choose from, and have it be paid for through our Medicaid and Medicare. People like KT and Sherry need to be fined and jailed for their abuse.

The reason i shake when i first get up, is my upset at the way i continue to be mistreated, the new incident being KT's cruel and insensitive voicemail that she left me yesterday.

KT has upset me for the final time. I will never trust her again. Never let her back into my life again.

My mom is now going to sell these houses, and i am moving to Michigan. I am NOT going to live in California anymore, even though this is my home state and home town, unless it's in an area where i know i will have a solid support network of individuals who truly get Autism, and who will not give up on me, and walk out on me; this support network will be made up of people who will truly care about me and be here for me seven days a week, to help me try to salvage what is left of my health and well-being. And they will become lifelong friends to me, something which i have never had before, with the exception of my mother and two of my six siblings. Yes, i do now have a caregiver who was a caregiver from July to September, and she is a sweet angel. But i live in deep fear now that she will give up on me too. Because of the neglect of my other caregivers, including the one i have nicknamed KT.....my left leg tumor is now out of control, draining, and is very painful, and i have to take Vicodin and Ativan every 6 hours to keep my life sane and pain free now. KT led me to believe that she cared and had my back, when in reality, i was a great burden to her that she could not wait to get rid of both of the times she worked for me. I now have solid evidence to back this up: screenshots of KT's and my messages, as well as the phone and message records of her phone calls and messages between her and another long distance friend of mine.

This is America. It is time that its most vulnerable citizens who cannot work and fend for themselves be able to have access to top quality health care and in-home care. Just because we have disabilities, and health issues, does not mean we should be abused and exploited the way we are. This needs to be addressed and stopped. We are human beings.

All I Want For Christmas.....

This is a video i made last night.....

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.

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.

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!!!!

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.