Emma and I are speaking at the upcoming icare4autism conference here in New York City, July 2nd. Over the weekend I asked Emma what she thought the topic of our talk should be. She wrote, “Let’s talk about mind/body disconnect and how that makes people misunderstand someone like me…”
I told her I thought this was an excellent topic particularly as this conference will most likely not have an audience familiar with the idea of there being a mind/body disconnect or if they are, what that actually means. In fact this is one of those topics I wish I’d known about from the beginning. It would have been so helpful had someone explained to me, when Emma was diagnosed, what it meant. Perhaps more than anything it is the body/mind disconnect that caused me to make all kinds of assumptions about my daughter, which I now know were incorrect. Because she did not…
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The following is what i just posted on my wall right now. But i am going to add to it here, because people need to know what happens when families don’t care, when our communities don’t care……
about those of us who are older, middle-aged Autistic adults
who have fallen through the cracks because of unfair functioning labels,
and all of the unfair and cruel negative information that organizations such as Autism Speaks
has churned out to the public and the media about us, and they continue to
they continue to perpetuate the notion that it is even okay to abuse, exploit, and even to murder us, for God’s sake!!!!!
NO!!!!! We are human beings who matter!!!!!!!!!!!
i am writing this as an open letter to
my state’s governor, and to Congress, and even President Obama,
to please, once and for all see the plight of the disabled,
and to see the plight of so many Autistic adults,
who are lonely, alone, and suffering untold agony and harship because of your apathy………….and all of the deep cuts you have made to
my programs, my safety net…..our programs and safety net
that me and my friends so depend on!!!!!!
I am writing this also, as an impassioned plea to my whole family,
my three brothers,
and two sisters-in-laws,
and to all of my nieces and nephews too,
and to all the families who just don’t care about us
and who refuse to see our plights.
Please turn around and face me and see me as the person i am, once and for all.
Please have mercy on me.
Please Hear my Words and See my pain.
Please, please, please, have mercy on us….on me!!
I am Autistic. I am Me.
My God created me to be this way….and my God does not make mistakes!!
I am NOT my family’s embarrassment!! Nor am i their tragedy and burden!!
I am a human being who is suffering way beyond what i can bear these days, and on all levels, in sheer agony and fear all the time now, because i am in terrible physical health now…..and i fear being put into a nursing home where i will have no freedom anymore, to even come onto my beloved Facebook and talk to all of my Autistic community friends like i love to do.
A nursing home
where i will risk being abused even worse
than the abuse i got from all of those caregivers i had
who abused me mentally and financially…..because they felt they **could**.
I am suffering……
Because i still do not have all of the 150 hours that i am supposed to be getting from my county’s In Home Supportive Services (IHSS) so that i can be allowed to remain living in my own home, where i am the most comfortable.
And because sadly, but truthfully, most of my family, does not seem to care to help me, or to even acknowledge my existence anymore.
I have always had the support and love of my mother and two of my sisters, but they all sadly lack the finances to help me.
I am supposed to be getting all 150 hours a month of care from IHSS that i am approved for…..but due to an automatic 7% cut that the state of California has made to our program, i only get 139 a month of those hours. That was alot for them to take from me……because i now desperately need all 150 of those hours.
I actually need 8 hours of care a day now.
I am housebound, stranded, without these services i get from IHSS!!
Here is my Facebook post, with more added, that i wrote at about 8:30 tonight:
“I am back for a little bit. I guess i had even more sleep to catch up on, because i ate my lunch about 2:00 PM today, and then went in my chair to watch some TV…..but instead, ended up falling asleep from approx. 3:30 PM till just after 8 PM tonight. I just hope i can sleep tonight now, and then be up tomorrow in time to have Connie come, give me my shower, and take me to my doctor’s appointment tomorrow afternoon. And then get my dinner. I do have food to eat for breakfast before she comes.
To My family: please do some deep soul searching…….sadly, you have all let me down……..and you have all now essentially abandoned me to let my poor elderly mother, who is on a limited income, do it all…..all that she is *able* to do for me.
And it is straining her to her limit to help me.
If i had known in 1996 that i was going to end up like this in 2014, with the bad lymphedema that i now have on both of my legs today, lymphedema which now also includes a very large lump that is the size of a basketball on my left inner thigh that now leaves me unable to walk more than very short distances, and unable to stand more than 10 minutes at a time…… i would have moved to Idaho in 1996……..or, i would have at least taken one of the few places that i did find to rent via my Section 8 housing assistance, up in the nearby town of Arroyo Grande, during that time period. Because at that time, i had a nice group of friends up in Arroyo Grande. Friends who really had my back.
I have since lost touch with them, sadly. And i have been unsuccessful in being able to reconnect with them on Facebook.
But yeah. I should have said **F** it
to the fears i had of taking the risk of
maybe moving to yet *another* Mean Bully Monster Street kind of place
like this place that i have lived in for the past 23 years
has been and still is
i feared moving where i would be bullied some more, like i have been here…..
even so, i should have taken one of the places that was available to me in that town
in the year of 1996.
Because i know now, that if i had taken one of those places in Arroyo Grande,
i know in my heart of hearts that my outcome today,
would have been so much different, so much better,
physically healthwise, and economically,
because in 1996,
i could still drive,
i still had my full mobility,
and i still had the ability to bounce back emotionally
from what i had already had to endure living here on Mean Bully Monster Street at that time.
I would have re-opened my case at Voc Rehab, so i could get the funds to go to school
and learn something that would have still allowed me to get ahead in life.
(((((((But, i know too, that had i of been able to make that move to Arroyo Grande, and had i of been successful in my endeavors with my schooling and finding work, i would have probably never found out that i am Autistic….and i would have never had the wonderful awesome pleasure of being able to meet all of my wonderful Autistic family on Facebook either…….))))))))
Instead, i let my fears of what was already happening to me here,
hold me back
……and keep me bound here on Mean Bully Monster street…….
where my house has now become a fortress for me
I have always done this my whole life though….because growing up,
i was taught by all of you in my family,
to be afraid of my own shadow,
to hide who i was
to always be afraid to fight,
to always be afraid to confront,
I was taught
that i was incapable of fighting and confronting
and as for work…..
when i did try to do work, i was always told
that i was not doing it the right way
and that i was never good enough
that i had to do it more intensely,
that i had to do an inpeccable perfect job
or it was toast
I was told i would never have a meaningful job
I was told i would never learn how to drive or have a car
I was told that i was even incapable of having a boyfriend or friends
i was told so much of the time
that i was an incapable person
that i was incapable of thinking for myself
that i was incapable of rising above whatever it was that was “wrong” with me
which i now know is Asperger’s Syndrome,
But i am NOT wrong.
And neither is my Autism.
I am learning that now.
Learning to love myself for who i am.
Learning to take my life back that my family took from me.
I just wish my family would all see this.
I really wish and need for the others in my family to understand my plight,
once and foir all, please,
and to begin to care and stop ignoring me.
I am online telling my story for a reason…..
and it is NOT to slam them.
I am telling my story
to tell about everything that i have gone through in life….
which sadly includes how my family has treated me
…..only because that is all a vital part of my story…..
and why i am in the situation i am in today!!
I am telling my story, because i desperately need more help
than what i am able to get from the government programs i am on.
And they won’t help me. And i am floundering because of that.
I am floundering badly.
I cannot sleep a full eight hour sleep anymore, and then i end up with my sleep cycle all screwed up because of that.
Because i am so worried and afraid of how worse things are going to get for me if i am not helped.
I want so much for people for people to start caring and seeing me
…….and all disabled and Autistic people…….
as the real human beings we are.
There’s nothing wrong with my stims.
There’s nothing wrong with the quirks and idiosyncrasies i have.
Those should not have ever embarrassed you, family.
God made me this way for a reason.
And that was to be loved and accepted
….not hated and kicked down the way i was…..
and the way i still am by you, family.
I know, yes, i know that i did hurt you all too, family,
and i apologize from the deep depths of my soul
for how mean that i know i could be to all of you
but that was only because i was lashing out
i always felt like you were all ganging up on me
because i was hurting and crying for you all to
understand, love and accept me
instead, i felt so very unloved and unwelcome
by all of you.
i think that some of you actually hated me from the day i was born
and i feel that you still hate me
and even blame me for the things that have gone wrong in your lives.
I am sorry for how i have hurt you all,
I didn’t know how to be
I never knew what to do or say
to make it all right
but the thing of it is this:
i was meant to be born
and i was meant to be born Autistic.
I want and need for my family to know how deeply i hurt,
tonight, as i write this
how deeply my heart bleeds,
because of the insensitive and cruel treatment of me when i was growing up,
all of the cruel words that were said to me,
all of the the shunning of me that they did,
all the cruel names i was called,
all of the the isolation in my bedroom that i had
so that i could get away from them for many periods of time,
especially when i was a teenager
and in my twenties too
because it would just get so hard,
for me to be around them for too long,
because of how it always seemed
they wanted me to always
Be and Act a Certain Way,
and i just couldn’t do it like they wanted me to…..
it wore me down,
it took all of my strength to try to conform
to the normal that you all wanted me to be
oh, how that has affected me my whole life!!
You just don’t know, family!!
How deeply i hurt!!
I say it not because i want to denegrate my family, but because the way i was treated happened,
It is very real,
and the pain and anguish, and the plight i find myself in today
all of the lonely Thanksgivings and Christmases i now suffer too
is because of the way they have chosen to
keep their backs turned to me
and they have let it ALL fall to my poor mother to help me.
No one can fully know the emotional pain i am suffering tonight
and the very real raw fear i have of my mother dying
then me being hauled off to a nursing home
where i will be warehoused till the day i finally just die
because my heart WILL give out if i have to be put into one of those facilities.
………I know it will…………..
Beause most of those facilities are awful places where they don’t care either.
I have seen those facilities suck the very joy of life and spirit out of people.
I know i have my sweet angel Connie now as my caregiver,
and she is doing all she can within her abilities to help me.
But she is limited by the hours i have.
I really need to have more help from my family.
And i so need and am asking for my Autistic community friends, to please,
help me to get my story told……
I do still have my GoFundMe page,
but am going to have to take it down now
due to their support for the wrong side in what happened in #Ferguson.
I need help, friends, please, in the worst way…..please share this blog, and signal boost this, please!!!!
I am even tagging those who aren’t yet on my friends list but who i hope will be.
Because i need our government, our President, our media,
and for EVERY family out there
and to understand,
once and for all
That we are human beings,
and we are hurting
when you shun us
and hate us
and call us
My heart so aches for my family to finalyl understand and accept me just as i am.
I ache for society to understand, accept us, and stop cutting our safety net.
And to please restore to us the cuts that have already been made.
Because we need that safety net, and these programs!!
Thank you. “
pink square with a darker pink faded spirograph. The text reads: “When I tell you I cannot do something, presume that I am competent to understand my own limitations. I am not being lazy. I am not manipulating others into doing things for me. I have legitimate support needs. I have workarounds for most of the things I listed above. Slow, ponderous, time and spoon consuming workarounds, but workarounds nonetheless. But the truth of the matter is there are things I cannot do and I know that I cannot do them.” Kassiane blogs at timetolisten.blogspt.com
Today when I picked Evie up from school, her para educator said that Evie had “flopped” when they entered the grocery store on her community outing. Evie’s para is new (to her) this year. We had an interesting conversation about the incident which I think reflects a common problem in communicating with Autistic people.
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Yesterday, I was scrolling through my Facebook news feed and saw that my friend, Jennifer–an Autistic activist, was upset by a blog post written by a popular blogger. Basically, the post was calling out parents like me that don’t want to change our kids. He says we are lying. I wouldn’t care except for the fact that my friend Heather refers to him as the “Prom King” of parents to Autistic kids because he has such a huge following and hero worshipers.
He relied on the tired old premise that those parents that don’t want to change their children do not have the same kind of Autistic child as he has. Meaning “too high functioning.”
People like my daughter and Amy Sequenzia are routinely written off because they…
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Yes, this, all of it!!
If you Google a list of Asperger’s characteristics, chances are you’ll find one that reads something along the lines of “lack of empathy.” The twenty-page report that made my Asperger’s diagnosis official even included a mention of me allegedly lacking empathy based on the 1:1 observations from one six-hour testing session. I’ve heard the whole “lack of empathy” thing innumerable times in my twenty-one years of existence. Let me tell you this, based on my firsthand experience: that statement is absolute crap. It is NOT true.
I’m not sure what started the myth that people with Asperger’s lack empathy. Is it the Asperger’s face, seemingly eternally locked in one position? Is it the Asperger’s eyes, that find it too hard to make eye contact or that seemingly always stare off into space? Is it the inability to read the social cues that come so naturally to neurotypicals? Some people…
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This is what Issy went through. This is what ABA therapy is. Yes, i #WalkInIssysShoes. I am also an Autistic adult who was once an Autistic child. Most of my family didn’t understand. They still don’t. And they don’t seem to want to. I refuse to keep quiet. I refuse to have quiet hands and feet, because it is wrong to squelch people in this manner. Stop thinking you can cure and fix the Autism out of us. It will not work.
Trigger warning: Discussion of ABA, quiet hands, whole body listening, etc.
I’m going to ask you to do something for a minute. Stop moving. Don’t scratch that itch in your left ear. Don’t shift your weight. Don’t frown with concentration. Don’t blink too much. Don’t yawn. Don’t stretch. Don’t fidget.
Don’t have a loud body.
Watch the clock. Has a minute passed yet?
Okay. Sticker. That wasn’t so hard, was it? Again. Two minutes this time. We need to be table-ready before anything else.
Oh, you moved. Quiet body. Sit still, don’t do anything. Two minutes.
Feel how you’re aware of how much you normally want to move. Feel frustration because you know you’re not allowed to.
Don’t frown. Happy face means happy days. Quiet body. Still. Two minutes.
Notice how it feels like you’re being set up to fail. Who doesn’t move at all?
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