Dear Blogger,
It's been almost two years, and for most of that time, you've treated me pretty well.
Until recently, when you slowly stopped letting everyone comment on my posts. And you randomly shut down. And then, you stopped letting me respond to the comments that did make it through.
Blogger, you kind of, uh, well, you stink.
Lydia
It's long been time for some changes around these parts. Let me outline the next week or so for you.
1. I've switched to WordPress for the time being; find me at www.autisticspeaks.wordpress.com.
2. A friend of mine and her partner have purchased for me www.autisticspeaks.com.
3. In the coming week or so, I will... somehow, magically (this means I don't know how, but my friends do and will help me) put the WordPress site into my own domain name's site, and I will henceforth blog on www.autisticspeaks.com.
What does this mean for you? Well, you will no longer find me here on Blogger. My entire blog has been imported onto Wordpress (and there are even some cool new features over there!), so you can find everything, including comments at my temporary home at Wordpress.
Secondly, it means that you will likely only use the www.autisticspeaks.wordpress.com link for a short time.
Thirdly, and I'll let you know when this is, you will find me at www.autisticspeaks.com. My own little slice of the WWW, eh?
So, come find me; there's a new post waiting for you. I apologize for any inconvenience. I say, possibly more to myself than to all of you, to stay calm and patient and that change can be a good thing.
Friday, May 27, 2011
Thursday, May 26, 2011
Six of one...
This post is either going to come out as brilliance or total insanity; it could truly go either way. You've been warned.
I don't think in words. And no, I don't think in pictures. I think in... physical sensations, feelings, visions, shapes. So, when I hear words or read words, I have to translate into my own language, formulate my response in my language, then translate back into yours, then type/speak. You can imagine why I process a bit more slowly than other people. If I don't have time to process the words and translate them, I frequently respond inappropriately (think, "How are you?" "Thank you." or "Happy birthday!" "You too.").
Now, another thing. I don't actually write these posts. They're already written in my own language... they write themselves. I just translate and put the words down. If they're not written and I have to write them, first of all, they're painstakingly slow, and second of all, they're choppy. They feel different. I can totally understand the concept of those who wrote the Bible writing God's words down... the words were already written, and they just put them down. I'm so not saying that God writes my posts! No no no! But, I can understand how it worked.
So, back to this whole language thing. Leigh was curious about how I actually think of different people and things. So, I give you, some of my favorite people and things, in my language. Please keep in mind that trying to put entirely ineffable things into words leaves you with an incomplete, possibly not-entirely-accurate depiction of the thing in question. That frustrates me and makes me hesitant to do this, but I shall try.
Once upon a time, when I first met Leigh and for the next year or more, she was a distant orb, grayish purple, and fuzzy on the outside but solid (think the texture of dryer lint). It floated just above the ground, kind of hovering. It was hard to see, and you couldn't put a finger on it.
As time went on, Leigh became a solid, smooth wall, right up against my heart. I can't see it (it's like trying to see your own nose).
Now, Leigh dated a guy named Lee in college, and the way I could tell who we were talking about was not by name or spelling but by how they felt. Lee was a series of staccato-looking... think ski jumps, in the upper right hand corner, floating in the air. They were hard and shiny and small.
Chloe calls up the sound of walking on snow. She is decidedly pink (not sure if she even likes pink!). There is a floating shirt (short sleeved, if you wonder, and I don't know the color) floating around, too. Chloe? Shirts? Can't make this stuff up.
Sister, though by no means the least bit boring, simply calls up her second-grade school picture, and that is all.
Mom calls up a shadow that melds into me. This one makes sense, for once, because I consider Mom to be almost a part of me, and me a part of her (come on, she carried me for 9 months, and genetically I AM half Mom). It's slow and gentle and comforting.
Elsie P (because I know Amanda would ask) is two disembodied little paws poking at me. White paws, of course. This is different from "cat" which calls up disembodied ears.
Now, don't everyone go asking me what you are and what this is and what that is, because it's exhausting and taxing to put this goofy stuff into words. I fear that I didn't do it right, but I tried, and it should be at least a peek into my odd little brain.
I don't think in words. And no, I don't think in pictures. I think in... physical sensations, feelings, visions, shapes. So, when I hear words or read words, I have to translate into my own language, formulate my response in my language, then translate back into yours, then type/speak. You can imagine why I process a bit more slowly than other people. If I don't have time to process the words and translate them, I frequently respond inappropriately (think, "How are you?" "Thank you." or "Happy birthday!" "You too.").
Now, another thing. I don't actually write these posts. They're already written in my own language... they write themselves. I just translate and put the words down. If they're not written and I have to write them, first of all, they're painstakingly slow, and second of all, they're choppy. They feel different. I can totally understand the concept of those who wrote the Bible writing God's words down... the words were already written, and they just put them down. I'm so not saying that God writes my posts! No no no! But, I can understand how it worked.
So, back to this whole language thing. Leigh was curious about how I actually think of different people and things. So, I give you, some of my favorite people and things, in my language. Please keep in mind that trying to put entirely ineffable things into words leaves you with an incomplete, possibly not-entirely-accurate depiction of the thing in question. That frustrates me and makes me hesitant to do this, but I shall try.
Once upon a time, when I first met Leigh and for the next year or more, she was a distant orb, grayish purple, and fuzzy on the outside but solid (think the texture of dryer lint). It floated just above the ground, kind of hovering. It was hard to see, and you couldn't put a finger on it.
As time went on, Leigh became a solid, smooth wall, right up against my heart. I can't see it (it's like trying to see your own nose).
Now, Leigh dated a guy named Lee in college, and the way I could tell who we were talking about was not by name or spelling but by how they felt. Lee was a series of staccato-looking... think ski jumps, in the upper right hand corner, floating in the air. They were hard and shiny and small.
Chloe calls up the sound of walking on snow. She is decidedly pink (not sure if she even likes pink!). There is a floating shirt (short sleeved, if you wonder, and I don't know the color) floating around, too. Chloe? Shirts? Can't make this stuff up.
Sister, though by no means the least bit boring, simply calls up her second-grade school picture, and that is all.
Mom calls up a shadow that melds into me. This one makes sense, for once, because I consider Mom to be almost a part of me, and me a part of her (come on, she carried me for 9 months, and genetically I AM half Mom). It's slow and gentle and comforting.
Elsie P (because I know Amanda would ask) is two disembodied little paws poking at me. White paws, of course. This is different from "cat" which calls up disembodied ears.
Now, don't everyone go asking me what you are and what this is and what that is, because it's exhausting and taxing to put this goofy stuff into words. I fear that I didn't do it right, but I tried, and it should be at least a peek into my odd little brain.
Tuesday, May 24, 2011
Some things to know about talking to someone who types
1. Only give me one idea at a time. It boggles me to have to respond to multiple ideas.
2. Please don't interrupt while I'm typing with new ideas. This confuses me; do you want me to respond to idea 1 or idea 2? I don't think you know, really, and of course neither do I.
3. Don't get weirded out if one of us refers to "talking." I do talk. Sometimes I talk with my voice, and other times I talk with my iPod. It's all talking.
4. Don't expect a normal pace of conversation. I type fast, but not as fast as you talk. Patience, grasshopper.
5. Don't be surprised if I sound somehow different when I'm typing. When I type, I am better able to express my feelings, wants, and needs... I will tell you if you've upset me or done something wrong; I will ask you to please stop this or that; I will tell you that something hurt my feelings. This is all normal to discuss, just maybe not what you're used to from me.
6. Don't tiptoe. If you bug me or upset me, chances are I'll tell you (or, more likely, hold my hand up)... point is, you'll know if I don't like it.
7. Normal rules of conversation apply. You talk, I talk, you talk, I talk.
8. Also, just talk normally! Most (not all) of the time, my receptive language skills aren't that bad (not average, but not horrible, either). If you're going to fast or if it's too noisy for me to understand... guess what?... I'll tell you!
9. Silence is OKAY! If you talk and then it's silent while I type, please don't keep talking... this will keep me from typing!
10. If you don't understand the device (because Heather- sorry, my Heather, but that's her name- can be tough to understand), just say, "Sorry, didn't catch that" or similar. I prefer not to just let you read because that takes away my voice, but in a pinch, that does.
11. Don't talk around, over, under, through... you get the idea... me. I'm here, I can't talk. Don't direct questions to whomever I'm with, and please don't engage my mom or staff in extended conversation and just leave me out to dry. If you slow down and give me a sec, I can join in, too.
12. Please don't grab my iPod for any reason!
13. I do not like to be shown off. I am a perfectly normal 23-year-old girl, and I like to be treated like one and not a spectacle.
14. That whole finishing my sentences thing? So over that. Not okay.
15. Don't try to tell me that "it's just me!" or "you don't have to be anxious around me!" or anything similar. When I talk, I can talk. When I can't, I type. You don't need to be worried about why I'm doing what at whatever time. Most of the time, I have no idea why or when I'll have or lose words. Just go with it; that's what I do.
2. Please don't interrupt while I'm typing with new ideas. This confuses me; do you want me to respond to idea 1 or idea 2? I don't think you know, really, and of course neither do I.
3. Don't get weirded out if one of us refers to "talking." I do talk. Sometimes I talk with my voice, and other times I talk with my iPod. It's all talking.
4. Don't expect a normal pace of conversation. I type fast, but not as fast as you talk. Patience, grasshopper.
5. Don't be surprised if I sound somehow different when I'm typing. When I type, I am better able to express my feelings, wants, and needs... I will tell you if you've upset me or done something wrong; I will ask you to please stop this or that; I will tell you that something hurt my feelings. This is all normal to discuss, just maybe not what you're used to from me.
6. Don't tiptoe. If you bug me or upset me, chances are I'll tell you (or, more likely, hold my hand up)... point is, you'll know if I don't like it.
7. Normal rules of conversation apply. You talk, I talk, you talk, I talk.
8. Also, just talk normally! Most (not all) of the time, my receptive language skills aren't that bad (not average, but not horrible, either). If you're going to fast or if it's too noisy for me to understand... guess what?... I'll tell you!
9. Silence is OKAY! If you talk and then it's silent while I type, please don't keep talking... this will keep me from typing!
10. If you don't understand the device (because Heather- sorry, my Heather, but that's her name- can be tough to understand), just say, "Sorry, didn't catch that" or similar. I prefer not to just let you read because that takes away my voice, but in a pinch, that does.
11. Don't talk around, over, under, through... you get the idea... me. I'm here, I can't talk. Don't direct questions to whomever I'm with, and please don't engage my mom or staff in extended conversation and just leave me out to dry. If you slow down and give me a sec, I can join in, too.
12. Please don't grab my iPod for any reason!
13. I do not like to be shown off. I am a perfectly normal 23-year-old girl, and I like to be treated like one and not a spectacle.
14. That whole finishing my sentences thing? So over that. Not okay.
15. Don't try to tell me that "it's just me!" or "you don't have to be anxious around me!" or anything similar. When I talk, I can talk. When I can't, I type. You don't need to be worried about why I'm doing what at whatever time. Most of the time, I have no idea why or when I'll have or lose words. Just go with it; that's what I do.
Monday, May 23, 2011
New rule in town
You'll excuse me if I continue to melt down while I type, won't you? 4+ hours and I'm beyond exhausted. Have been up since 5AM, spent half the day waiting (either for the doctor or for my ride) and, sorry to report but you agreed when coming here that you'd get the truth, spent the rest of the day running to the bathroom... because in the process of going GFCF, things are getting worse rather than better.
Anyway, I learned a few things from the neurologist today:
1. I CAN speak just fine.
2. It's a conversion disorder ("purely psychological," as she put it)
3. Not related to autism, because I don't have autism.
I don't care if they call it conversion, trauma, aphasia, green or purple... I want it to go away. I don't care how they treat. I don't care.
That said, I'm trying something new. You see, I type a LOT. I text, I email, I Twitter, and Facebook, and blog, and chat room, and forums, oh and my iPod... I type. Typing is my way of connecting with the world, even moreso now that I don't talk much.
So I'm going to take a typing break. Maybe if I type less, I'll be forced to speak more. Maybe I'll get so tired of my own head that I'll figure out how to speak again. After all, everyone (psychiatrist, neurologist, therapist, even Mom) say that it's all in my head... I guess we'll see.
Now; back to my meltdown.
Anyway, I learned a few things from the neurologist today:
1. I CAN speak just fine.
2. It's a conversion disorder ("purely psychological," as she put it)
3. Not related to autism, because I don't have autism.
I don't care if they call it conversion, trauma, aphasia, green or purple... I want it to go away. I don't care how they treat. I don't care.
That said, I'm trying something new. You see, I type a LOT. I text, I email, I Twitter, and Facebook, and blog, and chat room, and forums, oh and my iPod... I type. Typing is my way of connecting with the world, even moreso now that I don't talk much.
So I'm going to take a typing break. Maybe if I type less, I'll be forced to speak more. Maybe I'll get so tired of my own head that I'll figure out how to speak again. After all, everyone (psychiatrist, neurologist, therapist, even Mom) say that it's all in my head... I guess we'll see.
Now; back to my meltdown.
Sunday, May 22, 2011
Call me Lydia
Labels are important. They describe a person to other people (tall, short, athletic, writer...). This is true for diagnostic labels, too, because when you say "so-and-so has autism," then the doctors have a picture painted, albeit in rather broad brushstrokes, of certain characteristics of that person. They help us get services such as the Waiver I have or IEPs or what have you. They help to explain reasons for a person's behaviors or idiosyncracies. All good, necessary things.
But labels have their place. One of my staff constantly tells me that I'm "soooo high functioning" and "you'd never even guess you're on the spectrum!" and other things like that. This is frustrating, because first of all, she's just flat out wrong. I've asked other people, and they've said she's wrong too. Secondly, she isn't qualified to give such opinions and should leave it to my doctor and therapist to discuss such labels with me. Third of all, she's the only person who says that I'm anything resembling HF, and it's frustrating to me to have conflicting opinions thrown at me.
I've been tossing around ideas of what to say to her next time she says this. I don't want to be harsh, because I was just harsh when I told her that I was uncomfortable and believed she broken HIPAA by discussing details about my case with total strangers (her answer: "It was at an autism group so I thought it would be fine."). So, I think I've settled on a response...
"I'm just Lydia, thank you."
I think that in "our world," we get so tied up in labels that we forget who we, who our kids, really are. I am a lot of things other than autism. In fact, there is a button on CafePress that I'm going to order sometime when I can spare 5 bucks (haha, I know, when that ever happens) that says "I am more than autism" and lists a whole bunch of other adjectives that also describe me. I'll put it on my ever-present backpack.
So, friends, you have a challenge. Give me 10 adjectives to describe yourself or your kiddo or your friend or whoever it is in your life that has ASD... and "autistic" (or its cousins) can't be one of them.
I'll start with my best bud who has ASD whose name I won't write in case she doesn't want all the attention ;)
She is...
SUPER smart
loving
kind
a Christian
sweet
a good daugther
always puts others first
absolutely hilarious
determined
hard working
Okay. Your turn. Go!
But labels have their place. One of my staff constantly tells me that I'm "soooo high functioning" and "you'd never even guess you're on the spectrum!" and other things like that. This is frustrating, because first of all, she's just flat out wrong. I've asked other people, and they've said she's wrong too. Secondly, she isn't qualified to give such opinions and should leave it to my doctor and therapist to discuss such labels with me. Third of all, she's the only person who says that I'm anything resembling HF, and it's frustrating to me to have conflicting opinions thrown at me.
I've been tossing around ideas of what to say to her next time she says this. I don't want to be harsh, because I was just harsh when I told her that I was uncomfortable and believed she broken HIPAA by discussing details about my case with total strangers (her answer: "It was at an autism group so I thought it would be fine."). So, I think I've settled on a response...
"I'm just Lydia, thank you."
I think that in "our world," we get so tied up in labels that we forget who we, who our kids, really are. I am a lot of things other than autism. In fact, there is a button on CafePress that I'm going to order sometime when I can spare 5 bucks (haha, I know, when that ever happens) that says "I am more than autism" and lists a whole bunch of other adjectives that also describe me. I'll put it on my ever-present backpack.
So, friends, you have a challenge. Give me 10 adjectives to describe yourself or your kiddo or your friend or whoever it is in your life that has ASD... and "autistic" (or its cousins) can't be one of them.
I'll start with my best bud who has ASD whose name I won't write in case she doesn't want all the attention ;)
She is...
SUPER smart
loving
kind
a Christian
sweet
a good daugther
always puts others first
absolutely hilarious
determined
hard working
Okay. Your turn. Go!
Friday, May 20, 2011
Let's get one thing straight
Just because I talk one time you see me, doesn't mean I'm faking it, lying, being a brat, being willful, pretending, or anything else along those lines if I'm not talking the next time you see me.
How often do you see skills come and go in people? You can hit the high G some days but not others. You take a typing test but scored 90 WPM today instead of your usual 110. You do a magic trick but it didn't work right the first time around, like it did yesterday.
So how come when I can speak one day and can't on another day, I get accused of all sorts of things? My words are no different than any other skill. Just because for most people they are a constant thing does not mean that they are for everyone.
For the sake of argument, think for a minute as to why I would pretend not to speak. I love to talk, when I can. I love to share information and learn! What gain would there be in not speaking? In looking like a (insert negative word for being different here), when you know how much I like to blend in?
Is it possible, at all possible, that maybe I "faked it" so hard for so long and simply can't anymore?
So, say you're a runner. And you run everyday, and then you run some more. You've run a hundred marathons in your life. But no matter how good of a runner (read: faker) you are, eventually, you won't be able to run anymore. You'll have to simply stop and sit down.
Once I make sure everything's okay in my brain (because I do have that whole headbanging thing at times...), maybe I should just take a rest and give myself more leeway. My voice is not a gift, my voice is not who I am, my voice is not even special... it's my words that are all of those things, and you will have my words whether I speak them or not.
So hey people (who aren't even reading this...)? BACK OFF, okay?
Maybe if you do, the words will come back, you know? And maybe they won't. But you, don't you worry about that... let ME worry about that. You just enjoy me, if you can, in whatever state I'm currently in, and that is all I need.
How often do you see skills come and go in people? You can hit the high G some days but not others. You take a typing test but scored 90 WPM today instead of your usual 110. You do a magic trick but it didn't work right the first time around, like it did yesterday.
So how come when I can speak one day and can't on another day, I get accused of all sorts of things? My words are no different than any other skill. Just because for most people they are a constant thing does not mean that they are for everyone.
For the sake of argument, think for a minute as to why I would pretend not to speak. I love to talk, when I can. I love to share information and learn! What gain would there be in not speaking? In looking like a (insert negative word for being different here), when you know how much I like to blend in?
Is it possible, at all possible, that maybe I "faked it" so hard for so long and simply can't anymore?
So, say you're a runner. And you run everyday, and then you run some more. You've run a hundred marathons in your life. But no matter how good of a runner (read: faker) you are, eventually, you won't be able to run anymore. You'll have to simply stop and sit down.
Once I make sure everything's okay in my brain (because I do have that whole headbanging thing at times...), maybe I should just take a rest and give myself more leeway. My voice is not a gift, my voice is not who I am, my voice is not even special... it's my words that are all of those things, and you will have my words whether I speak them or not.
So hey people (who aren't even reading this...)? BACK OFF, okay?
Maybe if you do, the words will come back, you know? And maybe they won't. But you, don't you worry about that... let ME worry about that. You just enjoy me, if you can, in whatever state I'm currently in, and that is all I need.
Thursday, May 19, 2011
Little clues
I was thinking... when you first walk into my apartment, you'll probably notice the Disney artwork on the walls, the stuffed critters, and the dolls. So I guess you might think a child lives here. But if you look a little closer, you might see more.
The weighted blanket (Hi, Els! Somekitty hissed at Laura today.)
The noise-cancelling headphones, always within reach just in case
The behavior chart in the bathroom (for brushing teeth at night... I know, I know, but I hate it)
The behavior chart in the living room (for another necessary-but-hated task)
Aaaand the behavior chart in the kitchen (I REALLY want that flower hat!)
The "Mom folder," for things I collect that need to go to Mom
The white boards
The ribbon on my backpack, which goes everywhere with me
The iPod with (cheap and awkward but decent-sounding) speaker (okay, not that weird, but YOU know what it's for! And check out the little Japanese cat that someone-who-shall-not-be-named got for me... so cute)
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