Tag Archives: Autistic Adult

An Open Letter To The US House Of Representatives

Sunday, December 3, 2017

Dear US House and Senate both,

Re: Tax Reform Bill

My name is Melissa Fields. I live in Santa Maria CA. This is my story.

I am 57 years old, and #Disabled. I am Autistic and also physically disabled due to debilitating hip, back, and knee pain, plus chronic lymhedema on both of my legs. In addition, I have a large lymphedema lump on the inside of my left thigh that is literally larger than the size of a basketball. It is every bit as firm as a basketball too. This greatly limits my mobility.

I am disabled by many Autistic sensory issues, to certain types of noise, touching certain things/foods, harsh lighting, certain music, and being around people when they are rude and unfriendly. I am also disabled because I can barely walk and badly need more than just my quad cane and walker to get around. I also have issues with executive functioning.

I have never been able to work at a job my entire life because my above disabilities have prevented me from being able to secure and keep a job.

I have lived on SSI, then Social Security Survivor’s benefits my entire adult life. In addition, I also depend on both Medicare and Medicaid for my healthcare, and in home caregiver that comes to help me six days a week.

In addition, the Olmstead Law has allowed me to be able to enjoy living in my own small cottage. My Section 8 Public Housing Assistance helps me so I can actually afford to pay my rent each month. A CARE discount that I get each month also allows me to be able to afford to pay my monthly utilities. I am proud that I have been able to live on my own without much undue hardship for the past 30 years of my life. Before my lymphedema got bad, I even drove and had a car from 1990 till 2012.

I am writing this on behalf of myself and all of my friends in the Disability Community who, like me, either cannot work, or who are going to school or through Vocational Rehabilitation, in an effort to gain employment.

I am writing on behalf of my Disabled friends who already are working, but still need help with healthcare, necessary medications, mobility equipment and personal care so they can keep their jobs.

I am writing this on behalf of all veterans who have fought for this country who need services.

I am writing on behalf of senior citizens who depend on Social Security, Medicare, Medicaid, Housing, and other vital programs that help with their quality of life. And yes, I fall into this category now.

Please don’t let this tax bill become law the way it is written. If it does, you will be forcing all of us who are poor, Disabled, elderly, etc. into grave undue hardship, homelessness, and death. Many will have to drop out of school, and stop working, and those of us who cannot work, who depend on our social safety net for our very survival, will be plunged into utter devastation and despair. Many of us, like myself, have no family to help us if this should happen.

If i don’t have personal in home care, I will cease to live.

Please. I urge you to think of the millions of real human beings this tax bill will be hurting. Please don’t cut Medicare and Medicaid. or Housing. Or tax those of us who can least afford it.

I am all for tax reform—but only the kind of tax reform that is truly just and fair for ALL of us.Me on September 27, 2014-2

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Trapped

Hydrangeas-1

CW: This is not a fat shaming post. This is a Melissa health post, because i am perishing.

I slept all day today, and had nothing but nice travel dreams where i was traveling, by airplane, to the East Coast, and in the latest dream before waking up at 4 PM, i was traveling to Bloomington Indiana, a place i did once visit back in July 1983.

I so wish i still weighed at least 175 lbs again, with no leg problems, and could get another car and drive again—-and even fly places to go see my FB friends. I don’t need to be reed thin, just at least back down to between 175-200 pounds. That would get me back to a better place physically- functionality wise, to where i could do all of those things again. I know it would help the lymphedema in my legs too.

I want to repeat again: I am not fat shaming by saying what i am saying. My body is shutting down. I am shutting down. I can no longer function like i need and want to because i weight about 350 lbs now, and i have bad back, knee, and hip problems, as well as the lymphedema on both legs—-AND the huge lymphedema ROCK on the inside of my left thigh.

The lymhedema was caused by me not being able to sleep laying down anymore, but sleeping for 8 years, from 2004 to 2012, on a badly broken down living room sofa that bore into my left leg and thigh, especially. I would sleep sitting up, with my feet on the floor, which is bad for leg circulation.

In addition, i have always been, and sill am addicted to junk food to help keep me calm because of this hellish street i live on, stuck day in and day out, inside this house, because i never feel well enough to get in the shower so i can get out and about and get my hair colored anymore.

Having so few people actually care about me in real life—-(i do have my mom, one nice sister, Connie, and my Facebook friends, but no in real life local friends or family support other than my mom and one nice sister)—-has worn me, and my body completely down.

In addition—i have to endure day in and out, unbearable loud hot rodding and thunder bass noise right in front of my house on a street where the speed limit is 25 MPH.

I never get to go anywhere anymore because of my physical circumstances. It is even now hard for me to keep doctor’s appointments. It is getting harder and harder for me to even want to get out of my soft comfortable life chair anymore.

I am depressed all the time now, and don’t have the will to live anymore, so i am praying daily that either God lets me win the lottery so i can escape this toxic neighborhood, or for God to please take me—-because i cannot bear the way things are any longer.

I am an Autistic adult and i feel trapped with no way out of these circumstances.

My Night Of Lamentations

I have no hope whatsoever for a decent existence now. No more will the police help me, and the mean bully across the street knows this, and is giving me the night from HELL. I do not know if i will make it now. I am sick, having one meltdown after another.

+++

I don’t care about whether it rains or not anymore
I don’t care anymore because nobody cares about me
I don’t care because i evidently do not matter to most ppl
I don’t care anymore if they haul me off
I don’t care if they kill me
I just want out of my misery and hell.

+++

I have lost all faith in humankind and in God now.

+++

I am so upset and discouraged at the way my police dept has decided to blow my problems off that i left several of the Santa Maria groups i was in. As soon as i am able to move, and know i can move somewhere decent, it is not going to be anywhere else in Santa Maria. I can promise you all that!! I am DONE with this town and the way its police dept has let me down!!! Done, done, and done!!!

+++

I needed someone to physically talk to right now, so i called the national crisis hotline. I wish i could say it made me feel better.

+++

What would make me feel better right now is to win enough money in tonight’s (Weds) night’s lottery, so i can move away from this pit of hell as fast as i can. To a place where i know i won’t face bullies who torment me right outside of my house day and even night. Like i have here. Where i also won’t have to call the police anymore either.

+++

I no longer consider police my friends. At all.

+++

This night is lasting way too long. And then i know my daytime will be more of the same of what i had yesterday. And now i have no more police to help me. This feels like one long dark tunnel that i cannot seem to climb out of.

+++

I am an Autistic adult in peril, and i need help, please!! I need for my community to see me as the human being i am, to see my plight as the very real nightmare it is, and to not force me to have to endure it any longer. I no longer feel like i am at home here. I no longer feel safe. I no longer feel like i am going to make it. Because my police dept has given up on me.

I Am Autistic, Not Spoiled

midnight-auroras-lake-superior-michigan

I am Autistic
I am not a behavior problem
I am not a faulty broken appliance
My Autism
is a neurological developmental disability
That i cannot just take on and off
like one takes on and off their jacket or clothing
I cannot help it that i am easily triggered by
Abrupt changes
Changes happening that happens
without my first being told about it
and prepared for it
Harsh impatient angry tones of voice
Harsh impatient angry looks on the faces of others
Certain foods
Certain songs
Certain smells and scents
Certain atmospheres
Certain textures
Certain lighting,
especially if it is intensely strobe-like
The dark
Being chided or made fun of
Being told i said or did this or that
when i know i didn’t say or do that thing
Being told things are a certain way
when i knew they were another way
I am ultra sensitive to being criticized,
talked down to, condescended to and yelled at
Please understand when i am having a meltdown
it is not a temper tantrum
the meltdown has happened because
something has triggered me and
caused me sensory pain and anguish
sensory pain and anguish that is very real to me
As if i was being actually physically hit
or stabbed or whipped
it is especially at that time that
i need to be treated gently
My Autism cannot be fixed or cured
or scolded and yelled away
Nor can i separate myself from my Autism
It IS a part of me
It is all of who i am
My Autism does define me
It defines all of who i am
God made me and all other Autistic people
Please understand that I am me,
i cannot be and act the normal
that the world wants me to be.
Please understand this.
I love you, everyone.
I love you all,
and i really hurt when i feel
people don’t love and care about me.
Please let me be me and
don’t hate me for being my Actually Autistic me.

Rivers Of Anguish, Rivers Of Hope

Below are some of my latest posts. Because i am needing to write. because i really do need help. Because i really do need a way out of this jail i am trapped in. This jail that is made up of my toxic neighborhood, and the tiny 550 square foot box that i am confined to.

Sunday, Sept. 18, 2016–7:03 AM

“Oh boy, the sun is up early!! GRRRRRRRRRR!!! 😡 It’s gonna be hot today….i am so not looking forward to that!!! 😡

Grumpy me is going back to bed because it is still nice and cool right now, and i will just hope for the best, that my house doesn’t warm up too badly.

Just…..GRRRRRRRRRRRR!!!! 😡 ”

Sunday Sept. 18, 2016–2:53 PM

“Oh God, this is AWFUL!!!!!!!!!! My living room is an awful hotter than Hades OVEN this afternoon—-i should have had the A/C window open—-it is not, and I AM SUFFERING HOLY HELL!!!!!!!”

Sunday Sept. 18, 2016–4:14 PM

“I am okay now. My mom called the fire dept. for me, and they sent a nice police officer over to open my A/C window, so now i have the A/C going, and my living room is cooling off nicely. It got very HOT today, and i was almost ready to suffer heat exhaustion. Because here in my living room, it felt like it was 100 degrees. I was seriously burning up.

I REALLY hate my Sundays though, because i am alone with no one to help me at all on Sundays. At least i know i can call the fire dept or police if need be.

I think i will go cry now. I really feel like crying now. 😥 I HATE having to be alone anymore!!!! 😥 “

Sunday Sept. 18, 2016–5:10 PM

“I am glad i did not have to die in my hot living room today, very thankful for the nice police officer who opened my air conditioner window for me—very thankful that my air conditioner still works!!! 🙂 “

Sunday Sept. 18, 2016–6:09 PM

“The KSBY website says Santa Maria is still at 80 degrees as of now. YIKES!!!! :O “

Sunday Sept. 18, 2016–6:56 PM

“I am glad the sun is setting now. I really want to move where it doesn’t get hot like this!! Yes, i am serious about this!! Because……i actually had to get a police officer to come to open my A/C window today because i was getting overheated to where i was going to pass out.

I had my mom call the fire dept. to do this, but instead, a nice police officer showed up to open the window for me.

Like i say—i’m glad i had this help. Otherwise i would have had to call an ambulance.

I am going to go eat dinner now.”

Sunday Sept. 18, 2016–8:44 PM

“Here are the places i would go if i could still drive and still had a car—but i had someone who would go with me so i am not having to go all alone:
*The San Luis Obispo Farmer’s Market
*Avila Beach/Harford Pier/Pismo Beach/Shell Beach
*Avila Valley Barn
*The movies
*Panera Bread
*Solvang/Los Alamos
*Downtown Friday Nights farmer’s Market
*Applebee’s
*Cool Hand Luke’s for ribs
*San Luis Obispo downtown/the mission
*Morro Bay/Cambria/San Simeon
*Crumbles Restaurant
*F. McKlintock’s for ribs
*Woodstock’s Pizza
*Waller Park
*a nice laid back church that accepts Neurodiverse, LGBTQ, and all marginalized people
I wish i had local friends who would take me to these places. I wish i was not all alone. I wish my family cared about me. I wish i was not in this trap, this cage i am in.”

9:43 PM

“I just watched the news as it was on after the Sunday night NFL football game, and found out that today’s temp in Santa Maria got up to 96 sizzling hot degrees. No wonder i was having heart palpitations, and feeling hot, flushed, and like i was going to pass out!!

If i had not of had my mom call to get someone over here—-a nice police officer came—-to open my air conditioner window, i could have died today. I am still feeling very rattled, and am now afraid to turn off the air conditioner for fear i will feel like passing out again.

96 degrees is way too hot for someone like me to have to sit in a living room that has turned into a hot oven; because of my leg condition, and i am also 3x to 4x plus-sized, with a new problem: low kidney function….i cannot get by without the air conditioner.

I am going to have potato chips dipped in ketchup now. Because that is what i am craving. I am also craving soft and doughy homemade sugar cookies. But i don’t have those, so….yeah…..

I hate my Sundays on desert island!! 😥 “

9:44 PM

“Yes, 96 degrees is way too hot for me!!! 😦 “

I then posted memes about Autumn, because i love that season, when the leaves all turn such beautiful colors, and the days are just warm enough to be comfortable, and the nights are nice and cool. I also posted a meme about all of the soft and doughy looking Christmas cookies i would love to have this Christmas.

I really am alone, and so lonely for local friends.
I am lonely to have more caring people in my life.
I am sad because most of my family coldly ignore me.
I am in pain all the time because of my legs, and this leg tumor makes it so hard to even sit and enjoy my computer.
This Spring and every Spring now when the hills are bright green from our winter rains, i always miss getting to get out on drives to see them and take pictures of them.
I long to live where i can see beauty outside—not these ugly yellow tin buildings all day long.

I am hoping that i can at least get my own speed radar trailer. I made a Go Fund Me page for that, and to also raise the money for a move to a place whee i will have the above things i so long to have.

I so hope someone will help me, please.

https://www.gofundme.com/2ckkdc4

078

103

Please Stop & Listen To Me–I Need More Allies & Friends

I have spent the past several hours sleeping, and plan to sleep more.
I sleep all the time because i am not happy anymore.
I need the police to be real allies to me.
I need for them to stop ignoring me.
I need to have the speed trailer back on my street.
I need for my legs to work again, for this awful leg tumor to be gone.
I need for my next door neighbors to hurry up and move, because of the tension they still cause for me.
I need in real life local friends who will be willing to take me places so i can get out of this box once in a while.
I need for my family to wake up and start caring and understanding and accepting me as i am.
I need them to learn about my Autism and understand it once and for all.
I am tired on all levels.
It is a deep tired of all of my lifetime goals being lost to me.
A deep tired of not having things to look forward to and hope for anymore.
I dread each day because of the street noise and the next door neighbors.
This needs to change.
It isn’t just me, it is many elderly and disabled people who are in this same or similar boat.
Society throws us away and ignores us because we are too inconvenient to them.
We need for you to all care, to get in the cubby hole under the stairs and sit there with us, when we go in there, instead of yelling at us to get out of there.
What harm would it do to let me play with your shiny hair, big sister?
What harm would it do to listen to the story i have told, to see why i told it, to understand why i told my story—-which is because you all have essentially left me to live alone and lonely my whole life, always on the outside, always on the fringes.
I was always the last one to know things.
Please don’t tell your Autistic/Disabled children/kids/relatives
that they will never date
never drive
never have a job
never have friends or romantic relationships
or that they don’t know what’s going on or how to think for themselves
that is Othering and making us feel like we are wrong, less than and don’t belong when we DO belong.
Remember this:
Children are developing human beings, and even though we may develop at a different pace, does not mean we won’t be able to do all the above things.
We are still human beings, capable of great success, all our families have to do is BELIEVE in us and not ignore and discard us to sit alone in our rooms.
Many a time i would sit alone in my room and cry wondering why you all hated me?
God made us, and God did not make and does not make mistakes, so why do you so easily discard us?
Think about it….please listen to me because my health is now failing and i honestly do not know whether i will be around that much longer because of my health issues.
Yes, i needed to write this.
Yes, everyone needs to read this and take this to heart.
I do not want to be alone anymore. It hurts like hell to be alone.
This is why i have turned to certain roads, highways and electronics and made them imaginary friends.
This is why i made a friend out of the speed trailer when it was here.
Exactly why.
I hope and pray i get that back within the next two weeks, maybe even this week.
Yes, because it’s my friend and i feel it protects me when it is here.
I loved to sit outside and watch it working, so i hope it goes back on my side of the street again where i can easily watch it working again.
But it also makes people drive the speed limit, even slower, and lessens the loudness of the noise, and it also takes care of the loud hot rodding too.
Please, God, let this week be the start of life getting better for me again.
Thank you.

My Go Fund Me:  https://www.gofundme.com/2ckkdc4

103

Alone, & So Lonely I May As Well Live In An 8ft by 10ft Jail Cell

103

I, Melissa Fields, an Autistic adult—-yes, we exist, and yes, there are lots and lots and LOTS of us out there if people would just take the time to see, hear, look, listen to us and treat and respect us as the human beings we are—- had to stop driving in April of 2012 for three reasons——-

because i was becoming too afraid of going places—-anywhere—- by myself, because of all of the meltdowns i was having in public whenever i was faced with ableism from people—people who did not get my Autism and sensory issues, who would get angry with me and escalate an often ugly scene with me instead of understanding and learning why i was upset, and why i was asking for certain accomodations—–

because i had just gone through the very ugly and deeply traumatic break up of a friendship with a person who had become like a family member to me, who suddenly turned against me with full on inexplicable fury that year——

and because by that time, i had already developed a huge leg tumor the size of a basketball on my left inside thigh area, which made it hard to get in and out of the driver’s side of ANY vehicle. I began to develop lymphedema in both legs in 2005, due to having to spend years of not being able to sleep anymore in my bed but instead, sleeping sitting up on my already delapitated living room sofa with my legs and feet down.

My life since then has plummeted into a spiral of failing health and isolation and loneliness. All of the bullying i had taken by that time from neighbors all around me where i live, was starting to erode my physical health and strength. Today, i am a hot mess of heart palpitations, anxiety, PTSD, and insomnia, along with my leg issues.

Today, after going through a string of several abusive caregivers, i finally have Connie as a caregiver—and she is a friend and ally to me. She has been my caregiver for almost 3 years now. It was due to her,—-on her days off,—-and a kind beat coordinator officer at my city’s local police department, that i finally got some resolve to many of my issues. Most of the bullying has now stopped, except for when one neighbor who knows my situation and who knows how to best upset me, goes to talk to them and stir them all back up against me again. Those neighbors today are still a bad problem. The street noise is still a huge sensory issue that causes me daily meltdowns. Because people drive my street like it is a raceway/highway—and it is loud. I am “blessed” with tin buildings all around, which further amplifies this noise. Cars with thunder bass systems are the topping on this nice hellish cake.

But now i am at the point where i feel nothing but depression and despair anymore. I am 56 years old and life has literally passed me by. I have never known the joy of having long lasting close warm friendships, nor been able to experience a romantic relationship. I love people, and i am a people person, but i now have a great fear—–i always have—but today it is even greater—of being abandoned—-of having people turn on me and be mean to me—-so i hide——then i latch onto certain things like certain roads, highways, and electronics—- and make them my friends. I sometimes latch onto these things with my all. Because the loneliness hurts that much sometimes.

I am too young to feel like this. I am too young to die. But i feel as if i am living on a sort of death row, because each and every day is the same damn thing, over and over again till i want to scream. I wake up, do the same things every day, and then repeat the next day over and over. I only feel happiness when Connie is here. But iam now way too afraid to venture out and do anything alone—-for fear of being misunderstood, and for fear of people getting angry and saying mean things because they don’t understand and don’t want to understand. For fear of being rejected, shunned, ignored.

I was denied lymphedema care by a home health agency yet again because the physical therapist who came to see me, deemed my Autism as not real. I had a meltdown and screamed at him to leave my house. So i continue to suffer without treatments for my legs.

I don’t know where i’m going with this blog. But i am writing it because i want to educate people to let you all know what it is like when one is left to fall through the cracks and fail, because they got thrown away time and again. Imagine your own family shunning you because you’re Autistic and they don’t get that this is not a behavioral problem, but a disability, a very real disability.

Imagine your family putting tape after tape into your head that tells you you will never have a job, you will never learn how to drive, you will never have friends, you will never have a boyfriend,——that you are less-than, because you are disabled.
That’s been my life all the way.
I also write this because i need help–and i know that help is out there for us—i just live in the wrong geographical area, ya know?
That is why i turned to the speed trailer for comfort. I was happy when it was here. Yes, it calmed the traffic way down. But i also loved sitting outside to watch it working. The way the numbers would come up, and then down, the way the fonts look that the manufacturers of this speed trailer use, the way it lights up with a bright red “SLOW DOWN” sign if people drive too fast past it—and if they drive any faster, a strip of blue and red light bars flash on it—-began to really fascinate me.
Now i don’t have the speed trailer, and now my depression is even deeper, and i have had to go back on pain medication because my right leg is now in excruciating pain all of the time.
I did make a Go Fund Me page, But i am not getting many donations.
Like i say, i don’t know where i am going with this—-just to let you know that life does not have to be this way for us. And to plead with people to please stop ignoring us. Listen to us. Accept us. Love us. We are human beings, and God didn’t make us Autistic so you could throw us away.
For anyone interested, here is my Go Fund Me page.