Understanding Autism

Please read. For anyone coming to my blog for the first time, and who wants to understand me and other Autistic people, this is a must-read, from my friend, Alex Forshaw. 🙂 ❤ ❤ ❤

My Autistic Dance

1

This is based on a presentation I gave to colleagues where I work today titled Understanding Autism. Although not a transcript, the text here is based on my detailed speaker’s notes.

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In this house – and outside too!

Thirty Days of Autism

In this house we do acceptance ❤️
… and we do acceptance outdoors as well!!

I have had numerous requests to create an alternative version of the “In this House” image, so that it works for those who related to and loved the message of acceptance, but are more connected and rejuvenated by being in the woods or wilderness or just generally outside.
Here it is!
Yay!!

Image : Text in a variety of font styles and sizes reads: “In this house we do parallel play – We give each other space – We have time to delve into our own interests – We unashamedly spend a tonne of time outdoors – We stim like it’s nobody’s business (’cause it aint) – We love each other for our authentic selves – Because in this house we do acceptance!!” (Watermarked: Thirty Days of Autism: Leah Kelley)

As always, you are welcome…

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Medicaid is a Disability Rights Issue

Yes, this!!!
Mitch McConnell and all his fellow Republican cronies need to read this and look at the pictures of these people……me and my disabled friends are real human beings.

We too live in America, which is supposed to be The Land Of The Free.

We have the same right to Life, Liberty, and The Pursuit of Happiness as all of those who want to decimate us by taking the only service we have that allows us to be able to live independently and be a part of the communities we live in.

Just because we cannot work, does not mean we should have to suffer and die.

We WILL suffer and we WILL die if Medicaid is taken from us.

To Mitch and Co. when you read this, i hope this helps you all to find your heart.

Running with Crutches

Nearly once a week a conservative “friend” of mine writes something along the lines of “Yeah–cut back on Medicaid! No one should be living off the system.” I usually hide these from my newsfeed because I feel my blood boil. I am on Medicaid. About a quarter of my friends are on Medicaid. We all have one thing in common: we are disabled and require personal care attendants (PCAs) for daily life. I am amongst the more independent (at least physically) of my friends; I only need a PCA for an hour a day. Many of my friends require 24-hour assistance. If they cannot feed themselves or use the bathroom by themselves, having a PCA is not an option; it is a necessity. For me, having a PCA costs $35 a day, but for many it is exponentially more. The heartbreaking reality is that some of them do not qualify…

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A New Appeal-June 2017

Myself in our yard-summer 1975

My current situation is a Catch 22 wherever i turn. Not enough money. Not enough money. Never enough money. So, i am stuck here, in a place i hate, a place that is a prison, and a torture chamber, and an endless daily nightmare i wake up to every single day.
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I am a 57 year old Autistic adult, who is no longer in good physical health. I now suffer from very limited mobility, and it now very hard for me to walk, get in and out of cars, i can no longer drive, and can no longer take care of myself, so i have a caregiver, which is pad for by Medicaid. I am now housebound, and only get out because i have a caregiver who drives a car that i can get in and out of okay. I have never been able to work either, so i have spent my entire adult life since high school, surviving on very meager government benefits to get by all of this time.
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I need my Medicaid, mainly for the in home care i rely upon just to be able to keep all of my basic needs met. Without Medicaid, i would go hungry, and be without a way to keep myself clean, and my house clean, and i would be without heat, hot water, and electricity too. I would be all alone, lonely, and stranded. I would be forced to go live out the rest of my life in a nursing home, because i have no family support.
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My mom helps me by paying for my TV service, internet and phone, plus vitamins—-but when my mom passes away, then i am completely on my own, and will lose those things—-things that keep me connected to the outside world. Things that keep me a little bit healthy. Things that allow me to maintain friendships within the Autistic/Disability community on Facebook and Twitter.
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I have no family support from anyone else in my large family, besides my mom and one other sister who lives way out in the boonies of hot dry Arizona. I won’t move to Arizona, because the heat will kill me, literally, because of my physical health condition.
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Here are some things that the sister who lives with my mom has actually been telling me, posting these, because this illustrates the lack of support i have family-wise, plus their cruelty towards me—-also why i am not free to just go to Idaho and move in with my mom—-this sister lives with my mom—-Trigger warning for ableism—-
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“Gem” one—-My sister—–“I understand and respect your autism. But, and not being mean, and maybe cuz I’m feeling my age now, I hope that when you say you’re getting on a bus and leaving that state that it isn’t here that you’re coming. Not that I don’t care, cuz I do. I would probably have a stroke now though–my health is now as brittle as a fall leaf on a limb and the first strong wind (your meltdowns) will blow me to smitherings (lol) (not really funny though cuz it’s unfortunately the truth). (I couldn’t handle your music either 😉 (really). I agree, though, you do need to be moved, to a quiet place/street, and Mom needs to sell (those houses)………..just don’t know where though. 🙂 🙂 :)”
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Then this long “gem” she wrote me, and sent me links to agencies that she knew i had tried time and again, that she and i both knew would not help me this time either….Trigger warning for ableistic bad mental health slurs, and for calling Autism a mental disorder…… :
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My sister again—-
“ I’m not fed up with you, I’m just 61 going on 70 real fast and feeling it healthwise. But the night time calls aren’t really that good for Mom’s health-sleep-need either. So I spent some time yesterday afternoon and this a.m. researching places where you might find someone to call dispatch for you during the night and the following three were the best I found, but I’ll keep looking if you want–just let me know:
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California Nami for one has all kinds of advocates
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The next idea is so “HOT/COOL” and the Santa Maria Police Dept. is really supportive of the Neighborhood Watch Programs and I’ll bet they’d love having one on (your street).–can’t you just picture the Neighborhood Watch signs on your street? 😉 I love it!!!!! I really love this idea!!! Your new neighbor, E, might really appreciate having this program on the street too 🙂
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Neighborhood Watch
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Now don’t get upset by the next idea, as I’m not referring to you as a psycho but they offer a 24-hour crisis phone number and isn’t your Social Security disability based on your autism which was categorized as a kind of mental handicap? Anyway check out the following too:”
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(She sent me a link for a local Telecare mental health daycare program that i used to try to get help from when i still wasn’t sure where i fit diagnosis wise)
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Gem #3 that she wrote:
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My sister—–
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“ The only reason our phone is on during the night is in case someone in our family, including you, has to go to the hospital.
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Please find someone else to call dispatch for you, like one of your Facebook friends.
Otherwise, we’ll have no other choice but to turn off our phone at night, or I’ll be the one going to the hospital 😉
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Then this, also from that sister——this too is full of ableism, so yes, trigger warnings—–
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“I thought we pulled **** St. off the market so you and Mom could re-think your options because things were happening too fast and you guys weren’t prepared? Renting *** is dumb because right now it’s “show-for-sell-perfect” and Mom definitely won’t have the money to fix it up again if the renter’s wreck it.
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Also, we need to consider Mom’s “huge” credit card debt. If Mom dies, her creditors are going to immediately look into what she owns that they can attach their claws/liens to. This year we took care of this home, but your residence is still something her creditors can possibly attach and force a sale on.
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You guys really need to sell *** St. and you need to move into something that’s secure “for you,” that is either your’s or where the money off the sale of *** St. has been set up for you so you’ll be okay for several years. The money won’t cause you to lose your Social Security or Medicare. You can win the lottery and still keep your Social Security and Medicare. Duh 😉 You’ll only lose your MediCal. Big whoop! No big deal.”
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(Ummm—-no big deal???? I’ll lose my in home care if i don’t have my Medicaid, JFC!!)
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She went onto say—”Another idea: In 11 months, on your next birthday, you’ll be eligible to live, “in your own home,” in one of the wonderful 55+ communities (and many are not that expensive).
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Mom & I have even been considering such communities. In those communities you won’t have to worry about children, wild teenagers, dumb hot-rodding 20 to 40 year olds, or wild noisy neighbors or parties. Those communities are regulated by associations to keep things “nice” and peaceful. The sale off of *** St. could buy you a place in one of those communities plus leave lots of money left over.”
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Then she proceeded to send me a link to a mobile home park that is located in a VERY unsafe section of Santa Maria.
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This house itself that i live in and the cottage next to it—my mom owns both places—-is a money pit that still:
*needs full re-plumbs,
*my bathroom needs to have the floor ripped up, and a whole new sub-floor put in, then new tile, and a new toilet,
*I am sure much of the electrical wiring is not up to code
*I badly need a shower that is truly accessible—my current tub shower is not, even though i do have a transfer bench—it is still hard for me to get in and out of my shower *It is on a raised foundation, so there are three steps to both my front and back entrance that are now hard for me to navigate
*Both houses also badly need to be painted both inside and out—– —–so, if my mom were to sell this duplex as-is, she will not be able to get alot of money from the sale, because it is a fixer upper.
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I have no views here, just a small patch of lawn, small patch of blue sky, then asphalt, concrete, and then rows of ugly tin buildings to look at. I rarely get to hear any birds singing. I see no pretty flowers either.
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I need a way to get out of here to a place where i know i will be happy and where i will have more local friends, and supports than i have here. I won’t be able to do this unless i can at least get a way to get these houses fixed up and repaired, so that my mother can sell them for a good enough price.
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Being an Autistic middle aged adult, i am in hell on all levels because of where i live.
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I badly need to get away from here because of the constant sensory hell i am in due to the daily constant, all day long up and down, down and up loud traffic—-people hot rod and race through here constantly, which IS screamingly and roaringly loud, and top of that, they like to amp up their car stereos to where the bass is atrociously thunderous.
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I have no real way to truly buffer this noise—–and it has worn me down physically. In addition, i have had a long string of bullies in both the businesses and residents, who have seen my meltdowns, and instead of having compassion, they add to it, by doing just what they know will trigger me, so they can hear my screams and cries of sheer agony.
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I would be grateful and content to live here if it was not for the loud noise, the bullies who are still here, and the fact that these places need so much fixing up.
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I don’t know where or how to fix this never-ending pit of hell that i seem trapped in. I wish someone would read this who would have the means to help me to finally be able to not just get away from here, but to finally be able to have a dream i have had since i was a child, of living in the New England area—preferably near some of my Facebook friends.

We Weren’t That Resilient

Yes. This.

Maureen O'Leary

In response to the bell ringing that kids these days aren’t resilient the way their parents were growing up in the Wild West of the seventies and eighties suburban American neighborhoods and schools: I call bullshit.

We weren’t that resilient.

Those of us growing up in the seventies and eighties were not tilling Victory gardens and whittling useful things out of sticks that we found on the ground. I know. I was there.

I can only speak to my own experience, and trigger warning, I’m not prone to nostalgia.

Yes, we played outside with the neighborhood kids until the streetlights came on.

It’s true we didn’t have iPhones. We weren’t texting or addicted to screens.

We didn’t expect our teachers to give us A’s.

We drank from the garden hose when we were thirsty.

And it got pretty Lord of the Flies out there in the neighborhood and schoolyards before the streetlights came…

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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.

I Am Autistic—Say The Word

Flowers-2

One afternoon in April, i was upset, so i wrote a series of Vaguebook posts, and because i write when i am upset……and i mainly write to educate the general public about what it is like to be a middle aged adult who is Autistic so people will understand, get us, and accept us, i want to compile my vaguebooks all into a blog post.


What is it that helps flowers to blossom and bloom to all their glory? It is not yelling at them to grow already, and standing over them and forcing their peddles to unfold when they aren’t ready to unfold. And to be callous and cold with them. They need patience, actual warmth and affection, to be slowly and lovingly cultivated, and they need water, sunshine, and food.


For me, it is not being harsh and critical of me. And cold and callous. For me, i grow when i know i am truly accepted and when i am okay to be me. When it is okay for me to say “I am Autistic.” When i know my feelings, both happy and sad, and the ones that are painful too, are truly validated.


I don’t write to be mean and covert. I write whenever i cannot verbally say how i am feeling.
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Post One.
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“Trigger warning for the word stupid and the R word—and for also graphic depictions of child abuse
There is a valid reason why i have a chip on my shoulder as an adult.
It comes from growing up being told and made to feel
like i was all wrong all the time, every day, 24/7
that i didn’t have a right to my opinions
or to to say what i felt that how i felt, and i,
was just too weird
everything i ever did or said was
wrong, stupid and not good enough
being called the R word all the fucking time,
not just by the schoolkids but even by my own siblings
being silenced, muzzled, and having my feelings,
and me, always dismissed, invalidated and erased
being treated like my autism was/is a behavior
or that i use my autism as a shield, crutch, etc.
being told wrongly so that i was just a
lazy, spoiled, and selfish rotten brat,
when so many things
were and still are difficult for me to do
being told also wrongly so that
i never appreciated what people did for me,
when i did, but just did not know
how the fuck to show it
knowing my own father actually hated my guts
for the way i was even though i could not help the way i was
because i was BORN Autistic
imagine if you will what it is like
to go to school and have no safe zone there
where you can be you and
you cannot get away from all of the scary sensory stimuli
and you cannot be you or get away from
all of the unwanted scary sensory stimuli at home either
because your you is too wrong, too weird, to matter
you are expected to, forced to act a certain way,
and if you don’t, you are yelled down, scolded, and BELITTLED
all you can do is just go to your room all the time
because that is at least a little bit of a safe zone for you
always being talked over and interrupted
when i try to talk and express myself
yes, they did that too
and then they would interrupt
to finish all of my sentences for me,
not knowing what i was REALLY going to say
close spaces, having to be forced to endure being kissed,
or having to stand too close to others in a line
being beaten on my legs and buttocks growing up
beaten so hard it left welts that would raise up and bleed
having my hair and ears pulled so hard my head hurt
loud men yelling especially when angry
and my music–when i can’t even listen to my rock music
because the family music is country,
so i have to listen to that or i get in trouble for that too
a fear so bad i used to have to always
memorize the station my dad had the car and family radio on,
so he wouldn’t find out i was listening to the rock stations
my dad, brothers and sisters always pissed,
always irritated with me
i have bad flashbacks to all of this all the time
so that today, when anyone can present to me as angry,
even if  they aren’t, i am hypersensitive to it

i still take what people say and do wrong all the time
because of all of the hurts of my childhood
because i think i am being chastised and muzzled yet again
I have Complex PTSD thanks to what i went through
then losing my independence again,
losing my ability to drive and do for myself
after having my independence for 25 years,
where, 22 of them i was able to drive
has brought me back to how i felt as a child,
and that is how i feel now,
like i am that child again who had no rights
and now i feel as if don’t have any rights again anymore…… “
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Post Two
“I am not abnormal.
I am Autistic.
There is nothing wrong with me
or the word Autistic.
I say the word.
People need to say the word.
AUTISTIC.
PLEASE ACCEPT ME. “
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Post Three
“My special interests are not obsessions or addictions. They are my coping mechanisms and there is nothing wrong with me having these special interests.”
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Post Four
“I write and tell my story so that people will understand.”
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Post Five
“When i yell because of the noise outside it is because that noise is actually causing me pain. People yell when in pain. People yell and cry when they hurt.”
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Post Six
“When i say that i cannot do something it is because i truly do not have the ability or the spoons to be able to do that thing.
It is not that i don’t want to do whatever, it is that some things i lack the ability to do. Sometimes i have the spoons to do some things. Other things i never have the spoons for.
Please understand and accept that.”
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In closing, my Autism is not used as a shield, crutch, nor do i mean to use it as a means to throw it in people’s faces. I often do not have the words available to me to be able to articulate what it is that i want to say, especially when i can sense i am not being heard.
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So, out comes the word Autistic. And i cannot hide my Autism, or take it on and off like it’s a coat.
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I don’t write to bad mouth people.
I do not write about my family to bad mouth them either.
I write because the family abuse happened. Because i want to let others know they aren’t alone, and how to spot the signs of abuse, and i want my family to finally read what i write and say “OMG, i did do those awful things!”
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Because i have no family to turn to, and my mom and one nice sister are both financially unable to help me more than they can, i am in a vulnerable situation where if i do not have my caregiver to help me, i am literally left to fend for myself—-and i have been left without caregivers in the past—–and that was so terrifying for me that it has caused me to become even more hypervigilant about making sure the people i love and who matter to me, always understand and get me—-so they won’t throw me away too,like so many, many others have done.
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I live in constant fear of this, and when i have any disagreement with my friends, i instantly go into a panic mode so severe, thinking they’re angry, and hate me, and it often makes things even worse.
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I wrote this into a blog because sometimes i can put things better into words by talking, but other times, like now, i can do it better by writing it. That has nothing to do with anyone but my own spoon level at the moment. I have not had very many spoons ever since the election, to be honest. Yes, i am extremely scared about the current state of our government now, too.