Lisa D. (chaoticidealism) wrote,
Lisa D.
chaoticidealism

Yes, I'm okay.

A few days ago, someone posted on my journal that they were worried because I haven't posted for two months. I appreciate the concern--I really do; it makes me feel connected to the rest of the world that someone would notice that I haven't managed to post for so long. I want to reassure you all that I am indeed okay; I've just been having some trouble lately that's been taking up all of my attention.

I thought about it and I realized that maybe it would help to explain things to the anonymous Internet; isn't that the point of a blog? Well--this blog has been more like a series of essays than chatty talk about everyday happenings. It's final drafts instead of rough drafts, with each essay organized and edited. Maybe that ought to change. If there's anything I'm good at, it's lecturing about random things.

But here's the basic problem: I need more help than I'm getting, and I have a lack of medical records because I wasn't diagnosed when I was a little girl. The reason for that lack of diagnosis is rather simple: Deliberate medical neglect.


I've been writing to keep my sanity since I was a very little girl of about seven or eight years old. It helped me understand who I was and decide what I believed. It helped me not to break under abuse or lose my sense of self when I spent a year and a half at Pensacola Christian Cult College. It was never really about everyday events, though I mentioned them. I used to sit in chapel and write about why the preacher was wrong.

I wrote down what my stepfather had done to me--how he used to hit me, yell in my ear, and hurt me just enough to terrorize me but not so much that I would need to go to a doctor. Sometimes, my mother found my diaries, and she read them and tore out pages describing the abuse. She was afraid that we'd go to foster homes.

In sixth grade I was going to a near-mainstream private school. I hurt my wrist after my stepfather pushed me down. It wasn't a bad injury, but I wore a brace anyway, and when people asked me what had happened, I told them. Other students who heard me say what my stepfather had done must have told the teacher, and it must have gotten to my parents. That was the same year that they started asking for psychological evaluations for me because my behavior was odd. My mother took me out of school. I never went to anything near a mainstream school again.

My mother recently e-mailed me, telling me that she didn't abuse me when I was a child, as though I had accused her of it. The facts are these: She spanked me (harmless), she got annoyed with me (normal), she insulted and laughed at me (emotionally painful), and she dismissed my feelings and opinions (as she still does), but she never hit me or terrorized me. Those, she left to the two men she married, one when I was nine and the other when I was eleven. She was their accomplice, so afraid of the police and the foster care system that she hid their abuse and justified it to herself as my being "a strong-willed child". Nowadays, she's willing to admit that it was wrong of them to hit me, but she still claims that she was unaware of how bad the abuse was and immediately moves on to how stressed out she was when she was raising me because I woke and cried at three in the morning, wouldn't take showers, and threw tantrums.

My mother is an occupational therapist who has worked with children who have autism. She did not abuse me, but she did neglect me by refusing to have me evaluated despite the many red flags. She never addressed the fact that I did not have two-way conversaions until I was about nine, wasn't aware of what swearing was until I was eleven, and made friendly connections either with children much younger than myself, or with children who deliberately went out of their way to contact me, or with no one at all. She knew I was smart and used that as a reason to assume I could not possibly be disabled. Instead, she blamed my problems on me--my "strong will". (The term comes from The Strong-Willed Child, a parenting book by infamous ultraconservative Dobson. My mother idolized him and we listened to "Focus on the Family" every Saturday morning on the radio.) I had counseling once, after my first stepfather died. I suppose I was about ten years old at the time, and the counselor was a Christian counselor who essentially assumed that once I was comfortable with talking about the abuse that had happened to me with my first stepfather, I was fine.

Mom also restricted my diet a good deal. I had nothing that wasn't organic, natural, and preservative-free; the more buzzwords, the better. I remember one day finding a caterpillar cooked in with the broccoli; Mom just removed the caterpillar and kept eating, and I felt grateful when she didn't make me eat the rest of my broccoli and only laughed at me for not wanting to. Years later I would find tiny insects in my rice and eat around them much the way she had, leaving them at the edges of my plate. I didn't realize how odd that was until I had finished the meal and thought about it.

Many of my childhood memories are of scrounging for what I thought of as "good food"--anything that tasted good. I would even check the floor next to supermarket candy machines. When I went to my grandmother's house, I ate as much of her soups and sandwiches as I could hold, and as a little girl I mostly went to her house because it was where I could get good food. I remember going to church events, wondering mostly whether there would be food available, slipping bread into my purse, or picking bits of mold off week-old donuts. I don't remember being hungry; I just remember always looking for food and thinking about food and planning how I would get food. And I remember my mother taking away food from me, because she didn't approve of it, of being passed over for cookies at Sunday school because my mother had told them I couldn't have any. I can still glance at any food item and tell you whether my mother would have approved of it. My stepfathers knew of this and would sometimes "apologize" for abuse by taking me to McDonald's or giving me candy. When I left home, I grew several inches, and I gained a lot of weight because I still hadn't gotten over the idea that if you had good food, you had to eat it right then and there or it would be taken away.

I wasn't diagnosed with autism until after I was hospitalized for self-injury problems and depression. Someone finally caught on to it. I had suspected it myself, but I didn't really believe it until after doctor after doctor confirmed it. I still don't believe it sometimes because I keep replaying recordings of my mom's voice telling me that I'm too smart to be disabled, that I'm too lazy, that I "just don't want to" do the things I can't do, or that take a lot of effort.

This late age at diagnosis has really begun to haunt me now. The state department of developmental disabilities only takes people who were diagnosed in childhood, and they don't have an exception for children like me who were medically neglected.

Because that's what it was--medical neglect. To keep me out of "the system" that she was so afraid of, my mother let my stepfathers hurt me, never doing more than protesting and definitely never going to the authorities or taking me and my sisters away from her husbands. She didn't let anyone "label" me as needing help because she thinks of disabilities as a horrible thing to be labeled with. Instead of letting me get help, she blamed me and called me difficult.

Both of the men who abused me are dead now. The first died about six months after he married my mother. The second left my mother and moved to Utah, where he married again and died in 2008. It's funny, but I've gotten over what they did to me a great deal more easily than you'd expect. At least their abuse was straightforward. They intended to hurt me. It was black and white. Mom is much more complicated.

My mom will most likely cry and be furious simultaneously at me for having made this post, will most likely explain that I was such a difficult child that she couldn't help it, and will possibly claim that I am killing her with stress. She is living several states away and I'm glad for every centimeter of distance. My mom's not a horrible person, but she still hurt me a great deal.

Every night I have nightmares about being forced to move back in with  my mother. Usually, she's taken the cats away and won't give them back, or she's thrown them out of the house. Sometimes I remember that I'm thirty-one years old, and I try to find my way back to my own apartment. Sometimes I can't find my way. Sometimes I get stuck somewhere in the middle, in a big house with too many children where no one cares that I want to be alone. I keep trying to tell her that I'm grown up, that I'm on my own. Sometimes I wake up feeling trapped, and then my cat Tiny is sitting on the pillow next to my head, where my mother would never allow him, and patting my cheek with his paw and tickling my face with his whiskers, and it's okay again, except I'm still afraid that I'm not going to be able to live on my own, especially since I know that if I ever lose my independence, my cats will go to a shelter or my mother will toss them out. Her last cat was a beautiful black bad-tempered cat named Maunzi, and when Maunzi got fat, she took her to the vet and had her put to sleep instead of feeding her high-quality food and keeping her indoors and away from the neighbor's dog's bowl.

I've been thinking about getting an advance directive in case I ever lose the ability to make my own legal and medical decisions. I don't want my mom to make legal or medical decisions for me, ever. It would make that nightmare I keep having come true. She would treat me like she treated Maunzi--first creating the environment that caused problems, and then punishing me for having those problems, and the whole time thinking she was doing absolutely nothing wrong. The only reason I don't have such an advance directive is that I'm not close enough to anyone else to trust them to make those decisions, either.

I'm not in school any more. I tried in September to register, but when I was so disorganized I missed the first week of classes, I knew things wouldn't work out. I didn't know what to do, but one of the people at the disability services department referred me to an autism center.

Now, I have two people coming to my house, once a week each. One of them is a counselor who teaches me new things. One is an aide who helps with practical problems like doing paperwork. We hope that maybe, by summer, I'll have the skills I need to successfully finish those last few fuzzy, difficult, group-intensive classes I need for a psychology degree. I asked, and for someone with autism, my symptoms are quite typical. I'm not one of those "stealth autism" cases where nobody knows; I'm typical for a group of people who get services from an autism center. That reassures me that it's okay to acknowledge: I was really disabled as a child; I was really refused treatment that I needed; I have real problems. What's more, they're not problems I can solve by just trying harder or 'just doing it' (as my mother would say, usually right before laughing at me). They're real, disability-related issues that were ignored when I was a kid, and there are people who have the same disability I do, who have solved those same problems.

There's this fallacy in my head that I think, if I sacrifice enough, if I hurt myself enough, exhaust myself enough, have enough courage, I can do anything I'm supposed to be doing. That's what led to me being desperate enough to hurt myself repeatedly to get myself into an adrenaline-fueled state that only comes with physical danger, and then burning out so hard I landed in the hospital. I keep thinking that I'm just too lazy and that it's my fault. Any grown woman as smart as I am should be able to remember to go to class. I've done it before; why can't I keep doing it? All those ideas come from when my mom pushed the "record" button in my brain, and they keep re-playing. Every success, in the back of my mind, implies that I could've done it all along, and so every success is a proof of laziness.

I still can't get registered with the department of developmental disabilities, even though they have some services that could really help me. When I first mentioned to my mom that I wanted to get signed up with them, she immediately told me that it was a really bad idea, that it was dangerous to get "labeled" with "mental retardation". In her mind, I should keep myself as far away from disabled people as possible so I won't catch disability leprosy. I should tell everyone how smart I am and how I'm not really disabled at all, because otherwise they will treat me like dirt.

I feel like I'm being told, "Honey, your skin's light enough; you can pass as white. Don't braid your hair like that; straighten it instead. Talk like they do on TV. You're not really black."  (I'm of German origin, actually, so I don't know what it's like to be African-American; hopefully this analogy does say what I want it to say, though.)

Because I was neglected as a child, I didn't get a diagnosis that I needed. Yes, I will say "neglected" and I will not be ashamed of it, and I don't care how much my mother cries or accuses me of breaking her heart. And because of that lack of early diagnosis, I can't access many of the things that people who were diagnosed as children, can access. Right now I'm trying to prove that I was as autistic as a child, as I am now. And, no, I can't just turn in journal articles that say, "Autism starts by age five and usually before birth," because that's just science, and it's not good enough for a judge.

You know what, Mom? The cat's out of the bag. In fact, it's been meowing on national radio. I'm disabled. I'm autistic. I'm one of those "developmentally disabled" people you didn't want me associated with. And I'm not shiny happy disabled with just a little bit of quirkiness and a lot of talent to make up for it; I'm properly disabled. No, that doesn't give you the right to make decisions for me; in fact, I'm more competent at it than you are, and have been since I was quite young. You can't use the symptoms of my untreated autism as excuses to claim that I was obviously immature, strong-willed, and badly behaved, because you know what? All things considered, abuse and medical neglect and no one helping even when I asked for help, I think I did a pretty good job of surviving a shitty childhood.

I did a much better job of being a kid than you ever gave me credit for. I made plenty of mistakes, but at least I didn't sit back and blame them on someone else's "strong-willed" nature. Today, I'm glad I'm strong-willed. Really, really glad. I'm glad I tantrumed and rebelled and refused to obey and read under the covers with a flashlight. That's how I stayed sane. That's why I never quite broke. That's why I'm grown and on my own now, for real, and working on solving my own problems instead of crawling to the next husband or the nearest health guru to solve them for me. I know how to ask for help without giving up my self-determination or submitting passively to some "expert".

I'm worried that I won't be able to pay for my apartment. I'm worried that I can't finish my degree and that, when I do finish, I won't be able to get a job with it. I'm worried I'll lose my independence--not so much because I couldn't survive having my rights taken away again (I'm actually quite used to it and I know how to stay sane), but because my being in someone else's custody would leave my cats without their guardian.

I know how to live in a dangerous world and face the danger instead of pretending that if I just follow all the right rules, I can somehow keep myself perfectly safe. Safety isn't a thing. Never was, never will be. You can't make yourself feel better about tragic events by blaming them on the people they happened to for not doing exactly the right thing. That's part of growing up.

So yeah, I'm going to be fine, somehow. I've survived a lot in the past. I'm frustrated, but I'm getting help, without losing my right to decide for myself. My goal is to contribute to my community, to maintain my freedom, to be myself.
Tags: family, prejudice, services
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