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? 

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**

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.