Friday, January 31, 2014

Why I'm Leaving My Beloved Home State For Michigan

I am an Autistic adult who is tired of being alone and lonely and not being able to have people i can call on when i need something to be done, or for something to happen.

I have had far too many people say and promise that they were going to do things for me, and then they either blow me off, walk out on me, or turn against me.
**The Tri-Counties Regional Center repeatedly refusing to help me because i am too "high-functioning".
**No help either from Santa Barbara County Mental Health for the same reason as above.
**The lady from the Santa Barbara County chapter of The Autism Society Of The United States walking out on me when she seemed to not like me, and then she failed to write the letters she was going to write on my behalf to the auto shop and other businesses where i still have problems. She then went onto villify me, saying that i didn't **want** to be helped and didn't **appreciate** her efforts to **fix** me and **problem solve** me.
**The lady from the Independent Living Resource Center, also blowing me off several times when i tried to get help from them. She did finally come up with a plan but then abandoned me again, and refused to return my frantic phone calls.
**The Community Partners In Caring and Area Center on Aging also blowing me off because i am in my early 50's and not the required age of eligibility of age 62.
**All of the churches where i went and was shunned and ignored for being too needy and too high maintenance.
**All of the TV stations and newspapers i appealed to to have them please tell my story, and they too, ignored me.
**Am also leaving this street, where, for the past 23 years, i have been subjected to being ignored, more shunning, and lots and lots of bullying and terroristic actions of many of my neighbors here, with nothing being done about it, with my physical and emotional health going way downhill in the process, and now my days and nights are even switched because of this.
**The way most of the police and my city's government has also made me feel stigmatized and villified.....
**The lack of real friends who i can hang out with, call, do things with, and go places with, people who truly "GET" Autism.
**All of the friends and caregivers and others who have turned against me.
**All of the Thanksgivings and Christmases i have had to spend here in my house all alone too.

My home state that i love so much....has utterly shunned me and let me down.

In Michigan lies the promise of REAL hope for once in my life, that i WILL finally get all of the help, services and supports i have been craving and needing all this time. I will actually have friends there also, who won't walk out on me, yell at me, belittle me, and turn against me.

In Michigan, people will understand and know...i will have a place at the dinner table there that i don't have here where i grew up. I will have the good quality healthcare there that i haven't been able to get here.

I will have my LIFE back in Michigan!!!! And Michigan IS a gorgeous state too!!!

Wednesday, January 22, 2014

One Reason Why I Need To Leave California


I just got done reading an article in the LA Times:


http://www.latimes.com/local/la-me-caregivers-

20140121,0,3779007.story#axzz2r70whzJX


This article is about the possibility of caregivers being paid overtime pay 

nationwide, which i do happen to agree with, but apparently the Governor 

of my home state of California wants to make cuts and cap caregiver hours, if 

this new law is implemented.


What? Seriously? 


Yes. 


Please read the above article. 


Yes, you read right: 

even more cuts for 

those of us 

who can 

ill afford 

anymore cuts to 

our services and supports.


This affects everyone who relies on in home care so that we can remain 

living independently and with dignity in our own homes where we feel safe 

secure and comfortable, among our own surroundings.


This affects ME. 


I already receive 126 hours a month of in-home care from

In Home Supportive Services so that i can survive in my own home and not 

have to face being forced to live in a cold harsh nursing home, where i would 

totally

lose my independence and joy in life. I am actively working to try to get my

health back so that i can drive again, and even begin vocational training so

that i can finally get off all of the government benefits i have been on for the

past 33 years of my adult life. Yes. Seriously. I have lived on government 

benefits

pretty much since i graduated from high school, as many of us Autistics end 

up doing, because society still does not want to 

give us a chance in life, 

our own voice

our right to be who we are

without fear of ridicule, judgement,

hatred, rejection, abuse, and downright neglect.



If the rich were to, once and for all, be made to pay their fair share of the tax 

burden, and our gov't would stop cutting all of the vital services and supports 

that we who are disabled need, such as IHSS......and then pay IHSS workers 

decent LIVING wage....we would see a better quality of life for so many 

human beings who depend on these programs so that we can have a humane 

existence. 

I will never go into a nursing home. 

Never. 

I refuse to.




Sunday, January 19, 2014

My Lonliness

Lonliness
Like 
endless 
cold winter sunsets
can see them
but from inside of my house
i long to go to the coast
to hear and see the huge waves
that are there today
but 
i cannot
even do that.
All i can think about
is getting my leg taken care of
so that i can make my move
out of here.
Then i can see and experience
all the beauty around me again
Some how some way
it is going to happen.
It has to happen.
I have had far too many
disappointments and
things fall through
already
now is my time to move.
It IS going to happen.
It IS going to happen.

Monday, January 13, 2014

My Family's Attitude

I really am in a bind, as my whole family never ever really planned for my life at all....and they still want to keep the issue of me shoved clear under the carpet. The straits i am in are mainly because of my family and them putting me down so much in life, telling me:
1) I would never learn how to drive
2) I would never learn how to count or maintain a bank account
3) I would never have dates/boyfriends
4) I would never have friends if i didn't learn how to "behave" and "treat people"
5) I would never have a job
6) I was ugly, i was a "dog", "cow", "Dingbat", "animal", a "weirdo"...........AND the Big One....RETARDED
7) I was my mother's "penance" and was told this all the time by her.
8) I was also the family embarrassment, the family burden, the family pill and pest
9) I was all wrong, damaged goods, and inferior to all of them in my family
10) My dad used to punish me for hand flapping, swinging my arms, and looking at the shines in my hair
11) My sister regularly beat on me for daring to look at her shiny hair, or for always accidentally walking over her cowboy boots which she would purposely leave between our two beds in our dark bedroom when i would come home from school
12) My dad punished me for using slang words and for being different
13) I could never talk with, or joke with my dad either, he would yell at me for that....i could also never disagree with him, i got yelled and and punished for that too.

Instead of going to a high school that DID have special ed classes for me, i was sent to a college prep Catholic high school across the street where they felt i would never run off and i would be protected from the evils of the world...HA!! Those kids partied too.....but i was so well sheltered, i managed to avoid that too.
There are things i cannot handle....and i have been regressing badly, even more so, on all levels, ever since G turned on me, and then i went through all of the abuse with Jessica #1, S, Ciera, and KT.....and it just gets worse and worse.....this, folks, is the truth.....NOT a pity party.

Sunday, January 12, 2014

My Magic Bus To Freedom~~Autistically Me, But I Am So Alone

Again, spending another weekend alone and at home
I have no one to call to go anywhere with
I only have 126 monthly hours of care given to me by my county
so i must work strictly within those parameters
it is getting harder and harder for me
to stay cooped up here in these four walls
i feel so trapped
i so long for human companionship
i love it when my caregivers and nurses come, because they are
the only real physical human companionship i have right now
i have no real friends here in Santa Maria, just my caregivers
and the nurses who come
i lost yet another caregiver last month
because she too got angry with me because i was just
trying to get her to
stop ignoring me
and tell me when she was going to come back to help me
this is getting worse
my leg lump is gettig bigger
the doctors here still don't want to remove it
so i can just please have the freedom to walk freely again
the neighborhood where i live isnow so unbearably noisy 
the bullies have NO mercy on me anymore
and run rampant through here like roaring and screaming lions
i have no peace and rest except for the middle of the night
all of my friends are on my computer
and they all live
in other states and other countries and time zones
family love, family acceptance, family support
is not there for me either
i am utterly alone
i am utterly afraid
and in pain all the time now
both physically and emotionally
the beautiful sunsets and sunrises, the moon
and the ocean and the beach
i rarely get to see any of those anymore
i long to go to a cool church again too
the kind where the worship is rockin' and the people
are friendly and accepting of me
i keep running my caregivers off too, because
so many of them don't get my Autism
and have much patience with me
and they get angry when i complain that they are ignoring me
i do have a good caregiver now, but worry i will run her off too
this is so lonely, you just don't know how lonely and scary this is
i cannot tell you how awful i feel when i awaken from each sleep
it is as if i am waking up in a dark field
where there is no one to talk to on all sides of me
just the dark gray clouds overhead all the time
and grass that is also dark and gray
and it never ends
lately i feel as if life is passing me by
the loud roar of one of my caregiver's voices
still will echo cruelly, taunting me as she yelled at me all the time
telling me i couldn't have my Slurpees and fast food anymore
one day she yelled at me all the way to my bank
because i just wanted to hear my music that day
a longtime family friend now is also against me too
i don't mean to run people off, but it happens over
and over and over again
when will i have my voice
when will i have the support and security and family i need
when will i be able to get this awful heavy rock hard
basketball taken off my leg
so i can walk again and work on losing weight
because i will then be able to walk again
this doesn't seem to matter to the doctors
i need a way out
because i am perishing.
A Magic Bus to take me to my freedom where i can finally be Me
i can finally shine and have my dreams and goals for my life be reachable.
Is this too much to ask? 

Thursday, January 9, 2014

I Will Be Okay.....I Just Need A Miracle....And For People To Believe In Me

I will be okay when i know for certain that i have a solid support system of people who will 

not get mad at me, give up on me, walk out on me, and turn against me. And that i know i 

can make it to my bank, post office, stores, shopping, outings, and my vital medical 

appointments for the sake of my health, when i need to do these things. I need to have 

everyone know that i am on a fixed income. I don;t get that much from the government 

each month. Out of that, i have to feed myself, pay my bills, or i go without lights, hot 

water, heat, and i will also default on my credit cards. I have a heart of pure gold, and i 

would never ever try to take anyone of you. I will give what i am able to give, but cannot 

give what i cannot give. Please realize that. I mean only goodwill to all of you. Please 

realize 

that, everyone. Please. I am grieving sick, still, over how KT, for no reason, just turned on 

me, and still over how Sh***y took me, and turned on me. I need to know i have support, 

or this just ain't gonna work. Please, in Jesus's name. 


I have to remain hopeful, that my mom will get these houses sold, and that i will get back 

to Michigan as soon as possible. In the meantime, i took my pain meds a bit over an hour 

ago. I have an ultrasound appointment this afternoon for the leg lump. My friend is making 

alot of phone calls for me to arrange for me to have more resources available to me. I am 

hoping a miracle happens for me soon, so i can leave Santa Maria as soon as possible, 

because this town has been mostly so mean to me. I am trying to hang in there. I just 

hope 

i can get my iPad soon, so that if i have to be hospitalized again for this leg, i can have 

internet in the hospital. Again, i mean nobody on this earth ANY harm whatsoever. I am 

Autistic, i am NOT retarded, i am not dumb, i am not crazy. I am Autistic, and i am still a 

human being who means nothing but goodwill to all humankind. Please know that, 

everyone. Please don't give up on me and turn against me. Please. I have done nothing 

wrong or bad. I am me. My brain is wired in a different way. Please have mercy on me. 

Thank you. **Melissa**

Wednesday, January 8, 2014

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.