TRIGGER WARNING: assault, abuse, rape culture, #metoo.
In 1999, a now somewhat obscure computer game called Babyz was released. It was a three years later when someone I went to high school with gave me a copy of it. In retrospect, it was really kind of bizarre. I was essentially a digital pageant mom, y’all. The game was about, well, raising babyz. You taught them to walk, you fed them, you played with them. There were also versions of the game calls Catz and Dogz, and I recently found my discs for those… but that’s another story.
In 2002, I was fifteen years old. I went to a private Christian school. My home life was, without giving explicit details, less than ideal. The details are horrific, but unnecessary. I’d been online before then – I’d been on other message boards, read fanfic, wrote aardvark fanfiction, etc. But Babyz? Babyz was my introduction to fandom. I’ve said off and on that Harry Potter was, but that’s not entirely true. It was Babyz.
There was a Babyz RP board, so even after my aardvark fan fiction days, there was roleplaying. Of a computer game. About babyz. I never said my younger internet days weren’t weird, y’all.
I got my early internet message board moderating experience. I learned HTML and CSS thanks to Lissa Explains and fansites (which unless you know my info from those days, those websites are staying buried in the abyss, thanks). I made friends I still talk to frequently today and as a direct result of those message boards, I moved to North Dakota.
People make fun of internet communities, but as a lonely teenager, late nights talking with my Babyz friends saved my life (until I discovered JCY and the Zee a few years later, and gained even more lifelong friends). As a lonely, isolated teenager in Ohio, having a game to escape to? Having a website to run? Entering my digital kids in pageants? Really, this is odd to explain to an outsider…
I often joke that you can tell when I met someone by what nickname they refer to me as. I no longer answer to my birth name, but the Zeeps called me Angel for years, and I still answer to that though I think they’ve mostly switched to Nora. My Babyz Community people that I still talk to call me Nora now, but the nickname Anniebear is still very recognizable.
It was one game. It was one friend saying “Hey, I think you’d enjoy this game.”
And that one game changed my life.
There were other communities I was involved with as a young teenager – some of the more typical ones, like Neopets, and some other more offbeat ones, like Wajas. But nothing, bar none, will be like Babyz.
Now I face out, I hold out
I reach out to the truth of my life
Seeking to seize on the whole moment to now break away!
Oh God let me out, Can you let me out?
Can you set me free from this dark inner world?
Save me now last beat in the soul.
My entire life I’ve been told there are so many things I cannot do because I am disabled. I’m a victim of both being told there are so many things I cannot do and that Ic an do anything I set my mind to. How these both work, I really don’t know.
As a result, I’ve been trapped in lies. Lies that I’m not good enough. Lies that because I’m disabled, I cannot achieve anything. I’ve been told that I need to not let my disabilities define me or hold me back. It’s confusing. And I need to find my own truth. Make my own truth. Find my own path.
Something I’ve learned is I need to reach out to my own truth. Reach out to it, even. Because it is within reach.
Because it doesn’t matter what I’ve been told. They were wrong.
It doesn’t matter what I believed. It was wrong.
But what matters is the truth I know now and what I do with it.
To the autistic child,
Hi! I see you. My name is Nora and I’m an autistic adult. We’re pretty awesome, if I do say so myself. It isn’t easy being autistic, and I wish there are some things that I had been told. That’s why, little one, I’m writing this letter to you. You may not know me, but maybe someday we’ll get to meet each other. Maybe we never will and we’ll only talk on the internet. Either way, you’re loved and so very amazing. Your brain is so COOL! Isn’t it nifty how different people are? Isn’t it nifty how different brains can be?
I don’t want to sugar coat things. Sometimes it’s hard being autistic. You know all those bright lights and loud noises? Yeah, sometimes I want to melt down, too. And sometimes I do. My brain just gets all these signals from different directions all at once and cannot tolerate it. And you know what? It’s okay. It hurts, and it’s okay to let people know we’re hurting. People may get annoyed or frustrated when we melt down, but we simply don’t have the words to articulate what’s going on inside our heads. And you know what? That’s okay. It isn’t our fault that sometimes we’re overwhelmed.
Sometimes, you know those little movements we make? We flap our hands, we rock back and forth, we spin around. We fiddle with toys in our hands or we wear special bracelets or necklaces. Sometimes we chew our shirt collars. Sometimes we make certain sounds. This is called “stimming”. Sometimes it calms us down, and sometimes it makes us feel good. You know what? It’s okay. It helps settle us down in a big, scary world. If it doesn’t hurt someone else, it’s okay for us to do it. Part of taking care of ourselves is doing things that helps us cope, and so that’s why we stim.
Sometimes we find a topic we like and just want to talk about it a lot. Our brains are like soil – the little info seeds take root and grow into various things we just love to talk about. Some people call them “special interests”, others call them “obsessions”. I just like calling them “interests”. Sometimes we just kind of info dump on them, which means just blurting out everything we know about the subject. This is okay! It’s part of what makes our brains special.
Maybe you have trouble doing, what many call, “using your words”. I don’t like that phrase. Words are hard. Not everyone can talk with their vocal cords, and that’s okay! Some people use sign language, which means they talk with their hands. Some people use what’s called AAC, which means they use a special device or iPad app to talk. They type the words into it or tap a picture, and it says their words for them. Little one, all forms of communication are valid. It doesn’t matter if you speak it, move it, or tap it – your words MATTER and we (the autistic community and those who love you) want to hear what you have to say.
Sometimes when we talk to people, we use words we’ve said before. Or maybe phrases we know from video games, TV shows, movies, or books. Or maybe phrases we’ve made up that have special meaning. This is called “scripting”. Sometimes, when we’re asked a question we just repeat it back. For example, maybe we’re asked “Do you want milk or juice?” We might just say “or juice”. This is called “echolalia”. Sometimes people got frustrated that we don’t seem to understand what they’re saying. But most of the time, we do. We just are communicating in the best way we can. But when people can learn our scripts, we can adapt and learn to communicate with them in a way that’s accessible to everyone.
People WILL sometimes talk about you right in front of you. People WILL sometimes say you don’t understand what they’re saying about you, because you’re autistic. People who say they love you may say mean things about you in front of you. People may record your most vulnerable moments, and place them on the internet for the world to see, claiming to raise awareness for you. They’ll claim you don’t understand. I know you understand. You may not look like you’re paying attention, but in your own way you are taking in the world around you. But even if you feel like no one else understands you and no one else loves you, know there’s one person who has never met you who would move the world for you, if she could. Know there is one loyal, passionate person who is fighting for your rights as an autistic child.
Precious child, you are fine as you are. You don’t have to change to fit in. You don’t have to be not YOU in order to be loved and accepted. Some people are autistic. Some people are not. You’re autistic. It’s okay to say no, even in a world that teaches you to say yes and obey every order. It’s okay to let people know you’re in pain. It’s okay to stim. The world wasn’t built for autistic people, and we have to learn to live in it in whatever way we can. Sometimes, people don’t understand our ways but that’s okay, because we don’t understand their non autistic ways!
I hope that one day you find acceptance, and not awareness.
Sometimes it’s hard being disabled. I talk a lot about how I’ve accepted it and I’ve talked a lot about how I’m at peace with some of the paths I’ve walked down. I’ve talked about how many doors have been shut, and some of the windows just haven’t opened.
But sometimes I’m not okay with it. Sometimes I am just very frustrated with being disabled. I long to get a job, I long to work, I long to do something more with my life than typing on a keyboard or staring at a square device in my hand. It’s hard to see my friends and whatnot working jobs when I know it’s out of reach for me right now.
I try to accept it. I try to say I’m okay with being disabled. And, you know, for the most part I am. It’s the card I’ve been dealt, I’ve accepted it and made the most of it. But yet… sometimes it’s hard. Sometimes I wonder what my purpose is. Why I will be like this… I just find myself questioning WHY.
And I wish I had an answer to why I’m sometimes not okay.
April is child abuse awareness month. I don’t need to say in what ways I was abused, because in all reality, it doesn’t matter. I was abused. End of story. The details are for me to disclose when I want to, not for you to decide if I really was abused or not or if my parents “meant well”. I lived there. You didn’t. I am discussing various types of abuse here, so you might be able to figure stuff out based on this and previous blog posts. That’s okay. But I’m trying to keep this particular post vague in order to help people relate.
That said, here is a handy dandy list of NOT helpful things to say to me! Note, this may be different for other child abuse survivors. This is helpful to ME.
DO NOT SAY:
“Well, I was spanked and I turned out fine. Why aren’t you fine?” You didn’t live my life. Spanking is a very controversial topic, and I request that on this specific post you don’t debate it. I did not turn out fine. End of story. Don’t say that to this child abuse survivor, mmkay? (Seriously, do NOT turn this into a spanking debate. That is a firm boundary. I have a very strong opinion on it and others do, too. DO. NOT. DEBATE. THAT. HERE. AT. ALL. Any comments on Facebook about it will be swiftly deleted.)
“Oh, I’m sure it wasn’t that bad.” It was. You didn’t live it. The end.
“I’m sure your parents LOVE you!” They sure did a crappy job of proving it. Doesn’t help to hear that when I have PTSD.
“Well, my parents did XYZ to me, too, and I don’t have PTSD.” That’s nice. I do. I’m glad you had a different childhood than I did (seriously! that isn’t snarky!) but I have PTSD as a result of mine. It isn’t helpful for me to hear “well, I don’t have PTSD” because then my brain warps into bad places and it just isn’t good.
“Don’t you think they meant well?” Sure. Maybe they did. Maybe they didn’t. Doesn’t matter. I was abused.
“But all parents love their children.” Nope.
“They had their own “mental illnesses”. I have an alphabet soup of mental health bullcrap. I don’t abuse people. NEXT.
“That was over twenty years ago that XYZ happened. Why aren’t you over it?” Didn’t know my trauma had a deadline.
“I’m sorry that happened to you.” This is one I’m iffy on. I prefer the wording “I’m sorry someone did that to you” because it takes all the internalized blame off myself. Saying “that happened” makes it sound like it was something out of someone’s control. Someone had control. It wasn’t me. Someone did it to me. It didn’t just “happen”.
“Well, at least emotional abuse doesn’t leave scars.” I have no polite words for that one. And I’m trying to keep this post PG rated to make it more shareable. But… you know the whole “sticks and stones may break my bones, but words will never hurt me?” I believe that’s bullcrap. I also believe there is no form of abuse without an emotional counterpart because of how abuse plays with your very mind and innermost thoughts. So, there IS no ‘just’ emotional abuse. Emotional abuse is the very core OF abuse.
“Did you ask you ask them why they treated you that way?” Um, no? And get abused further? I was hurt once. Their side of the story? Yeah, they lost their right to that when they chose to abuse me. They don’t get to tell their story.
“Put yourself in their shoes.” No, wear our shoes. WHY do we only challenge people to wear the abusers shoes, but not the victim’s shoes? Ask yourself this question. Seriously, why? Why is it never “walk in the child’s shoes”?
“I don’t know how you turned out so normal.” Well, okay? Normal is only a video game difficulty setting… I’ve jokingly said it, but things I say in jest and things people say to me are two different things. I wince so hard at this one.
“But you denied xyz abuse for years! YOU’RE LYING!” No, I was trying to protect my abusers. It’s pretty common. I have psych records saying that even though I denied it, it was strongly suspected. But that shouldn’t even matter.
I am a child abuse survivor.
Do not say these things to me.
Awareness is talking about all the ways we are not like you.
Acceptance is talking about what makes us US.
Awareness is about trying to change who we are.
Acceptance is meeting us where we are.
Awareness is trying to change our behavior because it annoys you.
Acceptance is encouraging it, because it comforts us.
Awareness is talking about all the things we cannot do.
Acceptance is talking about all the things we can.
Awareness is “special interests”.
Acceptance is listening to our knowledge and infodumping.
Awareness is talking about trying to cure us (Which is eugenics. The ONLY cure for Autism is to ensure we don’t exist. I’m pretty sure being alive is better than, well, not).
Acceptance is adapting the world to us.
Awareness is talking about how tragic our lives our.
Acceptance is celebrating the fact we’re alive.
Awareness is Autism Speaks and Julia the Muppet.
Awareness is changing your child…
Acceptance is changing the world.
I’ve been getting more questions than usual about my URL lately, so I’m taking a break from autism acceptance pieces to finally sit down and write a piece on why I chose my domain and blog title. It comes from the AMAZING anime, Fullmetal Alchemist. And these two quotes:
“A lesson without pain is meaningless. For you cannot gain something without sacrificing something else in return. But once you have recovered it and made it your own… You will gain an irreplaceable Fullmetal heart.”
“There’s no such thing as a painless lesson, they just don’t exist. Sacrifices are necessary. You can’t gain anything without losing something first. Although if you can endure that pain and walk away from it, you’ll find that you now have a heart strong enough to overcome any obstacle. Yeah… a heart made Fullmetal.”
If you haven’t seen FMA, well, you should. Even if anime isn’t your jam. Because it’s that good. I can’t say too much without going into spoilers, but basically guy-loses-his-arm-and-leg-and-his-brother-becomes-a-robot-thing-so-they-try-to-become-human-again. Yeah. Well.
I’ve had a lot of pain in my life. And I’ve made a lot of sacrifices. Life hasn’t been easy for me. And I have rods in my back, which I joke are my own personal automail.
My own heart became automail. My own life became making myself strong enough to recover from the pain thrown at me. It hasn’t been easy. But it’s been worthwhile. It’s been a piece of making my heart strong enough to overcome obstacles.
Hard? Yes. Worthwhile? Well, I wouldn’t want these things to happen to me again. Or anyone else. But it made my heart fullmetal. It took my life and made me stronger. And I’m the champion as a result.
I am in remission from many of my chronic health things. Which isn’t to say I don’t struggle and I’m not in remission from others. I am not currently in remission from fibromyalgia/chronic pain syndrome (no, my doctors cannot decide which I have. Yes, it’s awesome), from neurofibromatosis, from my neurodivergent alphabet soup…but others I am in remission from. And it comes at an incredible cost.
There’s a delicate balance to keep this going. The things I will NEVER be in remission from and NEVER recover from can trigger the things that can be controlled to spiral again. My diet and my sleep schedule? Require to happen just so. And sometimes my other disabilities prevent that from happening. Which creates a vicious cycle, I know.
Remission doesn’t mean I’m healthy. It doesn’t mean I’m doing well, even. It means I’m doing marginally less sucky. It means that one aspect of my health is slightly less crappy than the other – and that’s not saying MUCH. It doesn’t mean I don’t still struggle. While I may not be actively puking violently from cyclic vomiting syndrome, I still struggle with nausea every day and often have to drug myself to get through. While I’ve been seizure free for years at this point, it doesn’t mean that one day (note: I do NOT have epilepsy. I had non-Epileptic seizures related to a medicine side effect but I’m told they could come back to haunt me) I will not have one again.
It’s hard. I still live in fear of remissions. I live in fear that my delicate balance will get thrown off kilter and that I will no longer be in remission. It’s just so HARD. I fight and I struggle and I try to LIVE and I am scared that one day I will no longer be able to. I am scared that one day I will be longer to be able to do the things I love. I had to leave my passions in school behind. I had to leave my dreams of a career behind. And it’s been a REALLY difficult pill to swallow. It’s been incredibly difficult to realize that yes, I am disabled and yes, I will always be. There’s no way to candy coat it, sugar coat it, make it prettier. I can’t work a job despite having some things in remission because others just aren’t and it isn’t feasible for them to be despite being on all the best medications.
I wrote this in the middle of the night, while listening to music, and scheduled it to publish during my neurologist appointment. I don’t have a normal sleep schedule. I don’t have a normal eating schedule. Nothing about me is normal…and it’s a ticking time bomb in some ways. It’s a mess but at the same time, it’s my mess. It’s my life. I’ve accepted it. Embraced it. And am moving on with it. Because it’s all a part of who I am. The bad health stuff, the good health stuff, the alphabet soup of brain cooties. It all adds up to me. And while remission comes at an incredible cost… I’m okay with that.