I’ve been watching Sabine on Netflix.

I am finding it really difficult.

It’s a documentary type thing so it’s all real as far as I know.

Part of it is the comparisons. They intersperse footage of her from when she was younger and passed at least somewhat better, and from now. She lost some abilities and gained a lot of weight. And I keep thinking how much I hate when people hold me up against who they think I used to be and find me wanting. It is a really maddening feeling.

Also there is the group home and that part is the hardest in many ways.

She’s exhausted all the time and she wants to rest and they just prod her to do more and more. I remember being on a toxic dose of Clozaril and being expected to function. If I went in my room and laid down it was psychotic withdrawal. Sometimes they’d force me to sit on the couch in the living room. I couldn’t stay awake there either. I sat down at noon and in an instant the sun was down and there was drool all over me. She sometimes looks that tired and people don’t get how hard it is to force your body to move around and do things.

And like I know in the early stages of my movement disorder. If you keep a person moving within a routine all day, you can sometimes stop it progressing any further. But once the movement disorder is entrenched enough, the benefit to doing that drops off. There’s also a huge difference between agreeing to do something like that and doing it without agreement. And the kind of meds she seems to be on really zonk you out.

But I can’t put my finger on what really bothers me about the group home. Other than. I know from recent experience what has to die inside a person to live in that situation. And I can see it in people in the movie. And my stomach flips over. It doesn’t matter if it’s the only solution they have, which it seems to be. It still requires killing that part of you. Of course after five years on a psych ward that part of her is probably heavily suppressed.

And I’ve just, all the time, I end up in situations like the DD rec program from hell last summer.

And I’m a very passive person compared to average.

But I feel like these days I have this piece inside me. Like a rod.

And it’s somewhat flexible. So you push on it and it bends.

But then it snaps back at you.

That’s the piece of me that would have to break or disappear to live in a place like that. That all the good clients at the rec program, they don’t have it. And I do. I got it from freedom. I don’t want to lose it. And watching this movie terrifies that little piece of me. Because it knows what happens.

And I don’t think they know about this in the movie.

And the thing where all the siblings leave home and she’s still there and things go into chaos. And how the world now today makes this inevitable.

And between that and the group home. And understanding things the filmmakers will probably never understand.

It doesn’t have to be like this. It doesn’t.

And it just hurts. In ways that family members and staff don’t ever know.

OMFG. New new new sub with way too little preparation.

They just sent me a sub who doesn’t even know I communicate by typing into a device that talks or that when I yell repeatedly for her in a tone that’s usually obvious to people as beckoning, I am not just making random noises. Or that I am in the bed. This is going to be a long long shift. They weren’t kidding when they said they didn’t know who to send.

Question for anyone who might know.

I’m almost never bored. Like I can lie there with my cat doing nothing but snuggling for hours. I live in bed and don’t regret doing so. So on the scale of boredom I am normally very low.

But then I get sick (like catch a bug, not chronic stuff generally). Or experience very severe pain. (Like 8.7 and up, I’m talking like a really horrible intestinal blockage or worse generally. With some exceptions.) Or become delirious. And then all of a sudden I am bored. Sometimes extremely so.

Is there some reason for this? Or am I feeling some unfamiliar emotion and reading it as boredom? Or what?

Asking because I have a bad cold and I’m bored as hell and nothing is getting rid of it.

Protest in Yonkers about the death of Corey Foster, who died of restraint in a residential facility after saying he couldn’t breathe. PLEASE spread the word

In a not too alternate universe this would be me. Several times over. I take it very seriously. Spread the word. Get there if you can. Tell others if you can’t. And if anyone says this was okay, just be glad I’m not in a room with you right now. No evidence of any wrongdoing, even with witnesses, my ass. And I’ve heard “If you can talk you can breathe” many times before… just before I stopped breathing. Fuck this culture that says its okay to abuse someone as long as they’re disabled and it’s called treatment. I’ve been at the bottom of those piles before and almost didn’t survive.

thank you for posting my son Corey Foster on your blog….on Friday May 18th 2012 we will be holding a protest in front of the Leake and watts school in Yonkers where my son was killed. This protest will be about awareness and to stop the abuse and deaths in our school. If you would like to join us the invitation is open. the address is 463 hawthorne blvd, yonkers ny. Once again thank you so much for your support and i hope to work with you in stopping the madness.

***********************

and Watts boy’s death: ‘I can’t breathe,’ boy shouts after staffers piled onto him, witness says

Apr. 19, 2012 - by Will David and James O’Rourke of lohud.com

Corey Foster, a 16-year-old resident who died Wednesday night at Leake and Watts residential treatment center, went into cardiac arrest while being restrained by staff who were trying to force him off a basketball court, according to two witnesses.

A half dozen staff piled onto Foster after he became angry, they said.“When they got off of him, he was on the ground and wasn’t responsive,” said Antonio Reeder, 17, a resident who said he saw the confrontation

Please click on the link below to read the full article.

http://www.lohud.com/article/20120419/NEWS02/304180105/Restrained-boy-who-dies-Leake-Watts-facility-Yonkers-identified-basketball-dispute-precipitated-incident

The time warp is starting.

I close my eyes and I’m still at the conference. My brain doesn’t know I’m home. I’m not comfortable yet because I’m not home yet even though I am. The moment I go dormant I get a rush of sounds and sensations and images, completely out of context and haphazard. I can feel my wheelchair being pushed. I can catch pieces of intonation and words from conversations I didn’t even notice at the time.

But the only true way out of this is through. It’s just so painful and disorienting that I typically delay a lot. Usually after it is over things are suddenly super quiet. And I have usually got drool all over my face. Sometimes I start twitching. I often temporarily lose memory of the events in question.

But I have to send this because it’s all trying to happen while I type and that’s not good.

Autistic things (TMI edition)

Not realizing until the very last second that the entire Internet meeting you are in does not want precise, detailed descriptions of what is going on in the few inches inside your rectum. But, at first, thinking that mentioning it is the same as griping about being late for your plane.

I really wish I had the ability to fully describe this right now but I used that all up in creating it. It’s a page in my communication software (Proloquo2Go) dealing with everything from polite to rude ways of dealing with people who cross various boundaries. Mostly neither polite nor very rude. But I put please in just for those few instances where I care enough to use it, I can tack it on to any other sentence on this page. I also put in the word “now” for similar purposes. I hope soon I’ll have the energy to write everything I put in there. It runs the spectrum from “Fuck off” to “Go away” to “That is hurting my brain.” A couple, like “Don’t patronize me,” aren’t written in the exact form they make when you press them, due to space limitations. I plan to add plenty more stuff when it’s not the middle of the night.

I’m hoping that having this ready will make it easier to say things like this when typing isn’t possible. Because it’s usually either impossible or highly limited when I meet people I want to say these things to.