Monthly Archives: June 2014

A Dark Night For Me~~The End Of A Bad Relationship

The following is a series of blogs i wrote in March and April of 2012, about the way a six year relationship ended, because i saw pictures of him this morning and this afternoon, and it has triggered me, and i am having bad flashbacks now……..

March 13, 2012

As most of you know by now, R, my next door neighbor, moved next door to me six years ago, with the understanding that he would be a friend and ally to me, and watch out for me and help me if i needed it. He was well-aware going in that i am autistic, that i have issues with neighbors in a few of the businesses here, and that i would have meltdowns. he said that would be no problem. In return, he would get a reduced rent, with approx. $350 a month taken off for being nice to me. Within these past six years, however, he has, every two to four months, gotten in very harsh mean moods with me……. 

Well, my latest trainwreck with him happened Sunday night, when, fearing i was going to run out of stomach medication, i asked if he would please, within the next two days, go to a drugstore to pick me up four more bottles so i would have enough on hand. His response was to suddenly lose it and go off on me. He used God’s name in vain on me twice, and emailed me telling me to never ask him to shop for me again.

As i am autistic, i don’t function well at all when people lose patience with me and turn nasty. Especially when they are fully cognizant of my plight and autism. I shut down. I can’t focus. I can’t even move. Or talk at times. I feel like i am in a sort of a black dense fog…and this is how i feel right now.

This time R is much more hostile, and is now retaliating by turning on the kind of music that he knows causes me to have meltdowns…and is threatening to turn me and my mother in for fraud against the government, when we have done nothing wrong or fraudulant. I do not know what has gone on in his world to cause this latest episode of his, but he frightens me badly when he gets like this, and each time he and i have these spells, people advise that my mom should evict him.

This time…it is going to happen. And during the eviction process, i must do all i can to lay low, and only go out when my caregivers, or friends, are here. I have blocked him from both my email accounts now, so he can no longer send me nasty grams. I am going to arrange for weekly caregiver visits during this time until he is gone from here, and i have also arranged to have others take out and bring in my trash, and wash my car.

What makes this even more hard for me to handle is that he built a bond of trust between he and i, said he was on my side, and that he would never do this to me….yet, it keeps happening again…and again. And what makes it even worse is that he professes to be a Holy-Spirit-filled Christian..and even quotes all kinds of verses about being kind to the poor in the Bible!!!

I am glad he is going to be gone. I don’t wish to hate him…but i am very angry and hurt at this time. He has betrayed my trust one time too many. This..is a classic case of abuse….and the thing is that he will, invariably, do this to others. I have, in fact, witnessed him verbally abuse another autistic child that he knows and sometimes takes care of…..

Again…i don’t write this to slam him..i write this because it is what so many autistics are going through, and society has to be made aware…that this kind of thing occurs..and it needs to be stopped. Agencies like Adult Protective Services need to be called immediately, if any of you see this kind of thing going on, please…because you never know…it could escalate into worse abuse…and even death…or death by suicide.

I now know that R is a bully monster. He used, abused, and took full advantage of me, and my mother both. I think that when these spells occur with him, that he shows his true colors. And i have come to the painful reality…that R….was truly never my friend.

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What It Is Like For Me….My Autism Is Not A Tragedy Or A Curse….Ignorance Is The Tragedy

Imagine what it would be like if you were to sit down at your keyboard to type out something that is critically important that you need to say now, and some of the keys don’t work….your very job and life even depends on this…..

Imagine if you were watching a really good movie or TV show, and really getting into it, mind, heart, and soul, to where you feel like you are actually in the quaint peaceful setting in that movie, and then all of a sudden the TV picture freezes up, and you miss the whole rest of it……

Or imagine if you were relaxing, reading a good book, same peaceful, quaint setting, where you feel like you are actually hanging out with the nice family that is being portrayed in the book, and some mean person comes along and yanks it right out of your hand, and throws it away, where you can’t find that book again…..

Or imagine how it feels to get ready to go somewhere that you’ve been really wanting to go, and then the car Just. Won’t. Start.

Imagine having a daddy who yells, bellering violently at you, and spanks you for sticking your tongue out at him, after he refuses to let you show him the nice piece of art you created for him that day at school while you are all eating dinner…..and he spanks you SO hard you have large painful welts all over your buttocks and thighs…..then he throws you in your room by one of your pigtails and locks you in that room…..

Imagine having three brothers, and their families, and a sister and her family who now all shun, block, and ignore you because of your Autism, and because you are tellig a story that has to be told that they don’t want to be out there……

Imagine being in a room where all kinds of wild colors are coming at you, all kinds of lights are flashing in your face, water is being sprayed into your face, people are poking and jabbing you in the back and sides and arms and face, pushing you too, and these same people are yelling and barking at you to move faster than you can move, but you can’t because your legs won’t work, and your brain can’t move that fast, and you are actually tied up to a chair…..

Imagine you live on a street that has tormented you for the past 22 years due to the mean bullies who have hated you all this time…..and used loud car horns, loud car, pickup, SUV and motorcycle motors, and their loud banshee yells to torment you with, and call you the same ugly names you were called as a child…..

“STOP!!!!!!!!!!”

That is how it was and still is for me. Because of the lifelong fears and the deep scars.

That is how my brain has always worked and how it still works.

And my brain comes with an amplifier—–an amplifier that amplifies every single thing that comes through my eyes, ears, nose, mouth, and skin.

Every single noise, color, smell, texture, taste, voice, melody, even the air temperature.

I try to talk to get it to all slow down to the pace that i am comfortable with, but no one seems to hear me, no one seems to understand.

This is how it is for me.

My Autism is real.

It is not imagined or fabricated.

I was born this way. I know i am Autistic by the way i felt scared of most everything as a child….bright lights, certain loud noises, bright light, flickering flourescent lights, the loud motors of furnaces in walls, loud booming radios, and by people being angry at me and hating me.

My family all teased me, and taunted me mercilessly, using all of these things i feared as weapons to get me to behave and conform. They even used physical force to get me to behave and conform to their ways.

Many of these things still scare and scar me as an adult.

I am not a bad behavior walking around.

As an adult, i even still have meltdowns. Because life scares me.

I always tried to make it in life, the best way i knew how,and it didn’t happen, because it was never good enough by NT standards.

My family hated my goofy, quirky personality and tried with all their might to squelch me.

I grew up, moved out at age 27, and i continued to try.

I even had my drivers license and drove a car for awhile, for 22 years i got to drive, and i loved that, and i continued to try….i tried, i tried, i tried…i went to agency after agency after agency, to try to get help so i could make it out of my rut and have a successful adult life.

But i was told, time and time and time again:

I am too high-functioning

I have to be age 62

I have to take certain meds that i can’t take because i’m allergic to most meds.

I have to have proof on paper of my diagnosis, that it happened before the age of 18.

I lack job skills, and an employment history

I am too quirky, too goofy, have too many hangups, etc…..and on and on and on……

But today, because of a series of unfortunate things that happened between then and now, i am now a total utter mess at times, because there are now so many things that i cannot handle once again.

I have stopped driving again. I even sold my car, because i no longer feel i can handle beig behind the wheel of a motor vehicle.

I used to be able to clean my own house, take showers, do my own shopping, and even cook basic things.

But then due to things that happened in the past 22 years, i lost those skills, and then my physical health came unhinged, and now that hampers me greatly.

On top of the obsessive compulsive fears i’ve developed that keep me from cooking and cleaning house.

If i lose my words and the wrong words come out, it is not because i am trying to be mean, or bitchy, or a diva, it is because i am becoming frustrated and about to enter a state of sensory overload.

Things that cause sensory overload and meltdowns…..

Not being heard and listened to.

Beig interrupted and talked over.

Being silenced.

When change happens abruptly.

When familiar rituals and routines are interrupted and not respected.

When people are not patient with me/us.

When people misunderstand and then jump to the wrong conclusions about me/us.

This is what life is like for me, and for many of us who are Autistic. And it doesn’t have to be this way.

I’ve said it before, and i will say it again.

It is not wrong to be Autistic. Autism is a neurological disability….and even though it isn’t always readily apparent at birth, nonetheless, we are still Autistic at birth, and we are going to be Autistic our whole lives. That’s not a bad thing. But some people like Autism Speaks, like to make it into a bad thing.

All we Autistics want is to be accepted and loved as we are. We don’t want or need to be treated like we are spoiled, lazy, and selfish. Or like we are a behavior issue. We don’t need to be cured, fixed, talked down to, and punished. We want to have open doors, opportunity, and to be able to live and work in a world that is going to be Autistic-friendly. And it will be when people stop listening to organizations like Autism Speaks, and start letting us speak and be who we are.

 

Silencing

Emma's Hope Book

“Having a voice after years of being ignored saves me from treacherous loss.  Years of nothing, makes the smart ideas percolate.  It is a strong force within, waiting for encouragement.”  ~  Emma

There are people who would like to silence my daughter and those like her.   One person recently accused me of “exploiting” my daughter to “satisfy your own vanity and craving for attention” by publishing things Emma’s said she wants others to read.  This particular person went on to write (as though to Emma), “Autistic people are irrelevant in your mother’s world.  And parenting is more of a competitive sport to her than a domestic responsibility.  That is truly disgusting.”   And yet if I do not publish the things my daughter writes and says she wants others to read and understand, then I become the silencer.  I cannot presume her competent, but then selectively do so, by not publishing what…

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A Traffic Jam and an Analogy

Emma's Hope Book

Yesterday we had to rent a car (we New Yorkers often do not own cars, one of the many wonderful benefits of living in such a vibrant city!) to go see Soma, who was about an hour outside of the city.  (For more about Soma, you can click on her name above, which will take you to her website for the Halo Center.  You can also read more that I’ve written by typing either Soma and/or RPM into the search box on this blog.)  We thought we’d given ourselves plenty of time by renting the car almost two hours prior to our appointment, but as luck would have it a lane was closed due to an earlier collision and coupled with the ongoing and seemingly never ending road work on all and any highways in and out of Manhattan, we realized we would be lucky if we made our appointment at…

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Autistic Pride Day is Today, Wednesday, June 18, 2014

Poster-Autistic Pride Day June 18-1Autistic Pride Day is today, Wednesday, June 18th, 2014. It was four years ago that i began to find, and make friends in the awesome community i have found here on Facebook of Autistic adults like myself. I began to blog, and then vlog about my situation.

The one thing i want to say right now is to all of you who are parents, aunts, uncles, cousins, sisters, and brothers, nieces and nephews of an Autistic person, please, please, PLEASE…..don’t treat them as they are less-than. Please….don’t ignore and shun them. Please don’t tease, taunt, and bully them. Please don’t make negative assumptions about that Autistic person’s life, future, and capabilities. If you don;t accept your Autistic son, daughter, niece, nephew, sister, brother, cousin, aunt or uncle or neighbor….it’s time to start doing do now. Google Autism Acceptance Day, and Autistic Pride, Google Emma’s Hope Book and read her blogs. Read all you can, and open your mind and heart. I i implore you to do this, because take it from me: to this day, most in my family shun and ignore me so much that it has greatly damaged even my physical health. Because all three of my brothers, and one sister and their spouses and families, my aunt, uncle, cousins, nieces and nephews all ignore me, i live in a state of constant raw worry about what my future will be like as i continue to grow older. Because my country’s government is so focused on giving the rich all the breaks they can, while they continue to take and cut from those of us who are disabled, elderly, etc., i worry, and worry greatly, how things will be, for me, AND my other Autistic friends. Stop listening to Autism Speaks…they will only tell you lies, that we are a tragedy, a burden, wrong, and need to be eradicated.

Please accept me. I am NOT wrong. God made me Autistic, and He does not make mistakes!!

An Argument Against Pathologizing Autism – What Others Had to Say

Emma's Hope Book

In yesterday’s blog post I asked for thoughts regarding the pathologizing language that dominates most conversations about autism and those who are Autistic.   I received some terrific responses both here, through email and on Emma’s Hope Book Facebook page.  I also asked Emma for her thoughts, which she very patiently gave me and generously said I could post here.

Emma wrote, “Deciding autism is a medical condition eases the minds of those who profit from it.”

A couple of great links were sent to things that have been written on the topic or related topics.  This, from the Zur Institute entitled:  DSM: Diagnosing for Status and Money, focusses on the DSM and argues, “Historically, many clinicians have been unaware that the DSM is more political than scientific, that there is little agreement among professionals regarding the meaning of vaguely defined terms, and that it includes only scant…

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An Open Letter to Comcast / Xfinity

Oh yes, this needs to go viral!! Net neutrality needs to be passed and now, so that it will stop cable companies like Xfinity from being the monster monopolies they are!!

Ramblings

Hello,

My name is Stacie Huckeba I have been a customer of Comcast for over eight years.

I realize that it’s a dirty little secret and you don’t like to talk about it, but c’mon, between just you and me, you can admit it. Basically you have a monopoly on internet service, at least in terms of speed. It’s ok, I like money too. Nobody is happier than me when I deposit big fat checks. Sadly, I’m not quite as “connected” as you guys.

I’m a photographer and I think I’m really good, unfortunately, I live in a town with a plethora of talented photographers so I can’t just sit back and be lazy. I’ve sent emails to the Mayor, and Governor and even my Senators and Congressmen asking that they put in regulations to make sure I am the only photographer who can use professional and top of the…

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