What's it like in a group home/institution?

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What is it like In a group home/institution?

I need information from anyone who was in a group home/ institution or living anywhere that was not home because of their autism. I don't want it too opinionated, just tell me what it looked,smelled, seemed, acted, tasted,felt like ETC. It's for a book, and if you want any information on the book then feel free to ask me. Go forth!

First, you cry.

If you're pretty, or very lucky, then someone will take pity on you only long enough to tell you to stop. If you don't, then forever afterwards you'll be known as the fool that cries, and the others will want to find out if it's true. Once they've determined what makes you cry, they will use it to make you cry whenever they feel like it, just because they can. Then you'll hate them for the power they have over you, and you'll vow to never make them happy again.

So you stop crying.

Now you're that wierd kid who cried to get sympathy and stopped when you didn't get any. They laugh. They sneer. But mostly, they leave you alone. After a while, you are no longer real to them - just wierd. You no longer have your old name, the one your parents (or some anonymous clerk is some anonymous office) gave you. Your new name, and your entire identity, is now Wierd. No matter how well you do, no matter how great your accomplishments, you are still Wierd.

The Others watch how you eat, how you walk, how you breath, how you stand and sit and sleep. They listen to what you say. They sniff the air around you. And everything you do, everything you say, everything you own, everthing you are interested in, and everything around and about you becomes weird because you are Wierd.

Then you surprise them.

One day, an Important Person praises you and sets you apart because you are Special. You have a unique talent or a skill that the Important Person greatly admires, and the Important Person rewards you in some way that no one else has been rewarded. You think that the Others will accept you now because you are Special, not Wierd. Instead, they now know you as Especially Wierd, because only another Wierd person would think of you as Special, and Important People are the wierdest of all. But that doesn't matter to you any more, because you know that you are Special - the Important Person said so.

So you wait.

And you strive.

And you succeed.

And the Others whom you once thought were so intimidating are now Small and Weak. They look at you and wonder why being Especially Wierd gives you the right to succeed where they have failed. And your success makes them ask you for favors. It does not surprise you. However, it does amaze you that they expect the favors they ask for. They are trying to draw on an empty account - one that they never opened or invested in. So you have no favors to grant them. Now you are Especially Wierd and Stuck Up.

Finally, you can leave. You take one last look around. The rooms are empty. The halls are silent. No one is there to see you off. Faceless, nameless clerks have whisked away their copies of the release papers. You wait for the bus with your meager belongings stuffed into two suitcases and a backpack. Your new life awaits, but will it be any different?

The bus comes, and it goes, and you're gone.

It's horrible. Crazy people everywhere.

This reads to me like an account of family life, not institutional life.

I interviewed someone on that topic awhile back. (That link goes to my long type-up of the interview, which is still actually the short version compared to everything I transcribed of it.)

I dunno, I didn't find the 'crazy people' to be very troublesome; but that was probably because I was mostly with a bunch of people who were either depressed or disorganized--nothing very threatening, and nothing with enough energy to try to victimize me. I guess it might be different if it were a long-term thing, because people will misbehave anywhere, and psychiatric patients have fewer recourses than most if they're bullied. I kept to myself, mostly. There was this weird guy who kept trying to touch me; but he was pretty obviously not really aware of what he was doing (I figured either really drugged or MR... likely both), and anyway, the nurses told him to stop when I told them. But this was a psych ward, not an actual institution--the kind of place where you stay week(s), not month(s). The biggest problem there was boredom--you were almost glad when the meds zonked you out, because there was nothing to do otherwise. Also there was the annoyance of having your every behavior pathologized; like they figured I was depressed because I stayed in my room, even though I was writing in a diary, not staring at the wall like you would be if you really were too badly depressed to leave your room.

Sensory data... Okay, sights: Everything's very bright. They are nuts about fluorescent lighting. And all the edges are hard and sharp, nothing soft anywhere. You have bars across the windows, and all the glass is the sort of safety glass or plastic that doesn't make sharp pieces if you shatter it--which you probably can't, unless you've been taking PCP or something. The mirrors are polished steel and you can't see yourself in them properly, which is really hard on the guys who still have the energy to shave (and don't mind being watched while they do it, because razors are Dangerous). There's nothing to do for fun, really; there are some board games missing half the pieces, puzzles missing half the pieces, and maybe an old, tattered Bible if they're not too politically correct. You can't have hardcover books, because those are Dangerous, too, and you have to write with markers or crayons. (I kept my journal with thin-tip Crayola markers. Highly recommended.)

It smells like disinfectant most of the time, but sometimes it isn't too strong. If you're lucky enough to be in Observation, which means you don't have a roommate, the smell will fade from your room unless you make the sort of mess that they have to clean up. There are usually bulletin boards with fake cheerful messages on them, which utterly fail to make the place look any better. You do have to deal with a camera, but after a while you forget it's there; and, anyway, if you sit right under it, they can't see you.

The food? Edible and bland. No real complaints. I've heard of people being fed inedible or just plain not enough, but that didn't happen to me.

Oh, and they check on you every fifteen minutes. Well, they checked on ME every fifteen minutes; I guess there are different time periods for most people. It makes it hard to sleep unless you're on sleeping pills, which everyone is, for the most part.

If you want to hurt yourself, you can. I could easily have committed suicide if I'd wanted to; and I made a hobby of collecting objects which with I could've hurt myself, just to spite the staff, though I didn't use them. I think there were six or seven of them by the time I left. The second time I got hospitalized I actually did hurt myself; it's quite easy with a bit of creative thinking, because they think you are stupid.

You can't close your door. This is a rule. It's very annoying.

If you cry, there will be six people standing around to pin you down in case you get 'violent'. This makes it hard to stop crying. You see other people get restrained whenever they shout, and it's always the bigger people that get it first. Short, fat people like me escape most of it because we don't look dangerous. (But I guess if you ever hit anybody, you would be put in the 'dangerous' category... I didn't, so I wasn't.)

Everybody will always be whining because they can't smoke. They let them wear nicotine patches but I guess it's not the same. I don't blame them even though I think smoking is kind of a dumb thing to do, because once you are hooked, it's pretty hard to stop, and a lot of them are old enough that nobody knew back then how dangerous it was.

The TV is always on. This makes it hard to think. And it's usually soap operas and game shows, too; you're lucky to get the news.

No real reason to be afraid of the other patients, any more than you would be of a group of random strangers (which, granted, may be a significant amount). They act weird but they are no more likely to be violent than anybody else (which is, granted, likely enough).

If you can, wear your own clothes. This is a Sign that you are not as badly disturbed as people who wear hospital gowns, for some reason. And I think it removes a bit of the 'patient identity' from you, though I'm not sure...

Last edited by Callista on 05 Aug 2008, 9:49 pm, edited 1 time in total.

that sounds like school :/ sadly, it sounds most like the school i went to that was predominantly black people and mexicans, and me, being white, was thought to be racist just because i wouldnt talk to anyone. psh, there was nothing to talk about and they didnt care anyways. i was "The Creepy Smart Girl" :/

as for what the institution was like for me, :

i was taken there without being told i was being taken there. it had apparently been discussed and decided by my mom and my teachers, but my mom didnt tell me about it till we were sitting in a stuffy office for a few hours.

so there i was, being told where my room was and what was expected of me. the walls in the hallway were painted more colorfully than an acid trip, clowns EVERYWHERE. it was horrible and tacky. and then my room was completely white and the furniture was a light honey colored fake wood. the blankets were ungodly thin, and i was constantly cold cause it was always 70 degrees and 80 degrees is cold to me.. the walls had obviously been written on in crayon and painted over *you could see "Kid Rock" reflecting off a wall in the bathroom* and there were nazi signs and other forms of hatefull images *including someone being killed* drawn on the inside of a drawer in the desk. the rooms were made for two, and you werent allowed to have any of your personal possessions except for your clothes, some books, and a stuffed animal. but the damn clerks took my bunny when i acted up on the first day, without warning. you're not allowed to close your door at night, and the lights in the hallway were bright. i didnt sleep for a week because i couldnt, so they started tranguilizing me to put me to sleep. tranguilizers were the solution to everything. wont do school work? tranguilizer. wont agree with the clerks and nurses/doctors? tranguilizer. act up? tranquilizer. its insane i didnt die from all the tranquilizer drugs i was given over time. i eventually made a kind of friend. we called each other friends, and played games with each other, but other than that i dont remember much about her except that she was named Jasmine, and she was an outcast from the other people just like i was. granted being outcasted by the others was good, they were there for being too violent, one kid punched a hole in his wall big enough to walk through. the instution was linked with an old persons home, and they shared a cafeteria. the cafeteria smelled like old people, and the rest of the place smelled like hospital, and some places smelled like both old people AND hospital. there was a sandbox and some playground equipment outside of the cafeteria, where i learned how to make my first sandcastle. me and Jasmine played hide and seek with the clerks by hiding under the cafeteria tables, we laughed at each others last names. mine is Hunter, hers was Pecker.

"Table Hunter!" "Table Pecker!"

making fun of the tables while we were making fun of our own names, and then even making fun of the butter brand that the cafeteria had. it was called Promise for whatever reason. then we got caught by the clerks and had to stay in our rooms for the rest of the day. eventually i got a roomate, she never closed the bathroom door when she used the bathroom, and she snored and talked in her sleep, and would talk to you while you were trying to sleep if she couldnt get to sleep. words cant describe how happy i was when she left. one day i noticed that Jasmine was allowed to have legos in her room. i was a little mad because it was unfair, i mean Jasmine was worse behaved than i was, and i wasnt even allowed to have my stuffed animal? but Jasmine was nice, she let me sneak some legos into my room, and i hid them inside the pillow case, and moved the hiding spot every so often. i never did explain the quiet room did i ? it was a 5x5 room with burber carpetting on the walls and cieling but not on the floor, the floor was tile. the carpetting was not for padding, it was horribly hard and rough, it was the kind of carpetting you skid your knees on when you trip and it takes the skin off. the door is 4 inches thick and solid steel, with 4 3 inch steel bolts on the outside and no window, so when the door closed you couldnt see anything in the room. its where they shoved you when you had an episode, and if you didnt stop in half an hour it was tanquilizer time. my first night there, a kid was in the quiet room and was up yelling and howling and crying and banging on the door till midnight. i got up to ask him if hed maybe stop, but when i tooked at the door, and saw that he was hitting it so hard that the door itself moved 4 inches back and forth with every hit, bending the walls around it with every hit as if it were stretchy like some kind of gel, i decided id better get used to it.

Wait, are we talking about the Monkey Houses of today or the Monkey Houses of more than a decade ago? There is apparently a huge difference.

My mother worked in a Monkey House for years. It was mostly for the mentally ret*d, but toward the end of her stay they started bringing in schizophrenics and "dual diagnosis" patients (being dual diagnosis means having more than one Horrible Monkey Problem, like being a schizophrenic with Down syndrome or a kid who's already autistic who comes down with uncontrollable, violent epilepsy). My mother had to leave because the dual diagnosis people were so terrifying and sad, standing in contrast to her previous patients, the generally docile adults with simple mental retardation.

The Monkey House is a place of arbitrary rules (the Down syndrome people liked to couple up and pretend to be married, but despite the average Downie's even, affectionate temperament and nonexistent sex drive, the management was obsessed with preventing this). The nurses are either wonderful human beings who went into the Monkey House for humanitarian reasons or jerks who thought this line of work would be an easy way to make good money. Both types are usually represented in any given facility.

I was almost committed to an "emergency hospital" specializing in treating brief but intense suicidal, homicidal, and psychotic episodes. I had tried to kill myself and felt compelled to try again, so I was brought in for the evaluation. The waiting room was full of what seemed to be meth addicts and the bathroom didn't have a lock, but the decor was simple and reassuring (no freaky clown murals). The evaluation was embarrassing. I was so happy that people were acknowledging my pain that I was positively chipper. The clinical psychologist was all like, what is she even DOING here? It is not possible that this fair creature is suicidal.

I was not determined to be a suicide risk. From what little I saw of the hospital, it seemed to be a commune where female cutters and male drug addicts did art projects with safety scissors.

safety scissors make me lol

and what i was talking about was a presonal experience *nod nod* and the other posts didnt sound liek things from a decade ago either.

When people ask me why I didn't tell my parents or go to the police about a lot of stuff in junior high, this man. SO this. (the counselor threatened me with institutionalization, and they would call my parents after meltdown and shutdown a lot saying I'm behaving "bizarrely" and stuff)



That sounds a lot like my experiences at school (though I was tall, not short). At school, it didn't even take crying. Just rocking back and forth in a swivel chair in the special ed class was enough for them to try to send me home, and as I had novel writing that day, I fought with them and ran off, eventually slipping into my classroom, and barricading the door.

I've been removed from class and restrained countless times in junior high and high school. One of the security staff, the one who made a point of shouting in my ear right behind me, after the year earlier she'd been scolded about yelling and touching me and about my being autistic.

This person one time on my way to class, stopped me and told me to go to the nurse's office (and I wasn't pale, walking any weirder than usual, or anything), and I said "why? I'm not sick" and then she went on to say "You don't look normal" and I said, "Yeah, I know that, but what's abnormal to you is normal for me."

And she said, "No, this is unusual even for you". I started walking on to class anyway, but then I saw the school discipline person, and he asked me if I was feeling ok and could go to class, and I said, emphatically, "Yeah!" and he let me go.

At least half the times the school called home, was because I have experienced shutdown (using their favorite word "unresponsive"). They would call the nurse and security staff to come to the class and put me in the wheelchair to go to the nurse's office. Even up to senior year of high school, with the 12 year history of "freezing up" or becoming limp and pliable, the counselor accused me of "playing games", the same old thing I've heard since I was 6.

I remember thinking: "I'm a senior in high school, and they're still pulling this s**t on me." And then thinking, "Thank God I soon won't have to put up with it anymore."

I still get scared, though, particularly once recently when I was starting to meltdown in a hotel room at 1 a.m., and my mom told me to be quiet (I was crying and banging my head on the floor) or someone's going to call emergency. I freaked out totally, though fortunately nothing happened.

No, that's the massive -- and possibly oldest-- lie of the entire system. There is little difference, what differences do exist are cosmetic only if that, and there will be little difference until they realize that the changes they do make are not what make a place better.

This post says more on that, because I can't bring myself to go into detail right before going to bed. And I think I just posted on some other thread recently about exactly this thing, I just don't remember which thread I posted it on. One thing to note is that the most extremely temporary of patients, and/or the most obedient/capable of obedience, don't always see the dark side of a place either. (Although the place I wrote about there, I saw all those things within 12 hours there. But I was already very good at watching. The staff person who came in there to get me, said her first thought was they hadn't changed since the seventies (when she was in similar places). But she was very good at watching too. Someone with very standard norms that hadn't been shifted much yet might go into the same place and not notice all this.)



I assume that unless they were children, then whoever told you about this was very condescending and out of touch.



!?!



?!?!?



Yes, they generally don't want to admit that disabled people can actually love each other.



And all but the best of the wonderful human beings manage to do massive amounts of damage every day in jobs like that, the best don't realize it and the worst do it on purpose.

For instance, whoever believes that people with DS are sweet, lovable, perpetual children with no sex drives (which I really hope these were children she was talking about, but even teens have sex drives -- I know there are staff who believe this even of adults though), and goes to work in a job like that... is only fooling themselves if they think the people who actually live there, are not (a) fully aware they have a sexuality, (b) fully aware that staff think they don't, (c) perceiving that as condescending and out of touch, and (d) probably taking advantage of that at every opportunity they can, in order to sneak around and do things that staff don't think they're capable of imagining.

I suggest anyone who continues to believe that, needs to read Tender Box and Mourning has Broken right away (and even those who don't, those are two amazingly important pieces of writing). Entire books have been written about the sexuality of people with Down's and other developmental disabilities, I'm pretty surprised when I hear those myths are still around... but then as I said, not a lot has changed.

I like to be corrected by people who are better-informed than me. Outside of autism, I sometimes have only my mother to go on.

If only my childhood "Family Life" had been so pleasant and nurturing ...

Does a month count (psychiatric hospital)? They wanted me longer, but I missed my mother horribly.

The food was decent, sedatives on demand, and I had a routine down; the worst thing was being away from my mother. I could have lived in said environment, no worries (ma was what brought me home).

I could go out and do whatever I wanted during the day, but I preferred to stay in my room and read (they had some decent books, and I would have accumulated a large collection of my own if it was a permanent thing), kinda like what I do now.

I never want to find out.