Friday, May 27, 2011

Dear Blogger (and you, too)

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.

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.

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.

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.

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!

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.

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)



Wednesday, May 18, 2011

Me too

I talk, but I don't always speak.

I have a voice but sometimes no words.

I communicate, but I don't use nonverbals.

I laugh, but I'm not funny.

I hear, but I don't always listen.

I see, even if I'm not looking.

I write in words, even though I think in pictures.

I know, but I don't understand.

I look (sad/angry/happy/excited/scared), but maybe I'm just the opposite.

I can answer, but only if you ask.

Monday, May 16, 2011

But I haaaave to

I know I already posted today, but something big happened, and I have to get it out. Besides, you will understand why it's big.

I cried.

For the girl who cries daily, sometimes many times a day, why is this a big deal?

It's a big deal because I cried because I was touched. I have not been touched since I watched the movie I Am Sam when I was maybe 15. That's 8 years, but who's counting? (That'd be me).

Stuck without words, my ever-generous mother lent me nearly $200 so that I could purchase an iPod Touch and speak whenever I wanted to. I have so much to say (well, you know that by now)... but my mouth doesn't always cooperate. Sometimes I open my mouth and all I get is crying. Sometimes (often), all I get is "Hi, Els." Sometimes I get gagging. And, sometimes, I get some words. There's a lot of deep breaths and contorting my face involved, and it's very broken speech, but sometimes it'll cooperate... usually in the afternoon.

Anyway, when I got my iPod on Saturday my mom told me that (for real this time!) I'd need to pay her back, because she has dental work to pay off that ran in the thousands. I promised her that I would (and, really, I always will, but she never holds me to it. Or she accepts the ten bucks then fills up my gas tank. You get the idea. She's a mom).

Right, well, I can't work... not even sure Heather will have me watch the boys anymore with the whole no words thing... and that SSI hearing isn't even for another month, which could go either way, and even if I do get SSI, the money takes a while to come in.

So, I set out to sell my book. I expected, well, not much. And what happened? I've sold ten copies in two days. Okay, so that's $80, but that's also ten people, who will surely lend it out, who will learn about autism. That's huge.

And then, hoping and praying, I set up a GiveForward site (keep tabs here), again, not really expecting much. In fact, my mom flat out told me that people weren't going to help me and that people wouldn't like it if I didn't speak. In 24 hours, that site has raised $75! I am now just $25 away from my goal.

My mom will be paid in full within the month. But more than that, she will be proven wrong.

Wait, what?

You see, I don't believe that people are good. I believe that people are bad and that any good done is God working through them, whether they know it or not. But my mom will learn that people DO help each other when they need it... perfect strangers. Everyone from my sister, who loves me to the moon and back, to people on a message board I post on, to friends from near and far and ones I've never met at all, to one of my Food Network heros (cough ANNE BURRELL cough), to the O'D family who I've never met nor heard of, to the anonymous donors. They help. They stand behind me.

And someday, I hope and pray that I'll be able to stand behind them when they need help. I don't know that that will ever be in a financial sense, but somehow, I pray that I can help them. Help you.

And this is what brought the weird sensation in my face (that, honestly, takes me quite a while to discern if I feel happy, sad, or sneezy)... but this time, it was happy and tears. Well, I'll be.

Fifteen Percent!

I reached 15% of my goal today! Can we make it 25% by tomorrow? I think so!

The address is www.giveforward.com/ipodtouchforlydia. Every little bit, no matter how small, will help. Even if you can't donate (which believe you me, I understand), please help by spreading the word.

Thank you!

You've been warned

Maybe I'm wrong on this, but I don't feel like I all-out rant all that often. Do I? I'm not usually angry at the world... but right now I am. And this being my blog where I can say whatever I want, I'm going to write about it. Then, I'll feel better.

I've seen quite a few (5?) families who have raised the money online for their children to get iPads. Now that I have my iPod (on Mom's lent money and owe her it back), I have studied their methods and tried to emulate them. I can't raise a penny. A dime. NOTHING. And the only thing I can think is that whole thing where people think of kids as cute, little, hope for the future... and adults as nothing. We're nothing. All I'm asking for is a dollar here, a dollar there, and it will add up.

Then there's my therapist. Here's a good example of what she does. I had an appointment almost three weeks ago. Leaving her office, I made an appointment for three weeks from then (this Saturday). Later that day, I realized that this was indeed far too long and texted to ask if I could come in in about 10 days. "Of course." Okay, when is good? No answer. For almost 2 weeks. I texted her every few days, "When can I come in?" Nothing. Then, when she did answer, "Sorry, all filled." Well, yeah, duh, after that long! She NEVER answers the phone or returns calls and ignores emails, so texting is the best option. Oh, and she says that it's "impossible" that I keep going backwards and have lost my words.

I'm looking for a new (ASD specialist) therapist.

I know, I know I said that GFCF did nothing for me.... well, I've been back on gluten and casein for 10 months, and my GI system is a downright mess. Not to mention, I itch to the point that I cry. So, back to GFCF I go. I now do not eat dairy, gluten, meat, fruit, or veg. Interesting, it shall be.

OH, and yesterday, Mom told me that I needed to leave before my stepdad came back into the house because "it would be hard to explain" and "he wouldn't get it." No comment.

Anyway, excuse my rant. I'm frustrated and tired and weary.

Okay. On the road to feeling better...

Sunday, May 15, 2011

Sounds like a blog post

There is ever so much on my mind. A brain isn't a very big thing, you know, and it's awfully hard for it to carry all of this around. But, some things take precedence, so I will try to corral the "noise" in my head (for clarification, no, I do not think in words at all) and give you something cohesive.

I watched videos of myself at 36 months, at Christmas, last night. (Want to see them? I'm a cute kid. They are here). And I wonder what you see. I see flashes of ASD... to be specific, lots of totally ignoring people, spinning in circles for twenty minutes, no eye contact- though I did look at the camera twice and captured that, near-meltdowns and screaming, typical refusal to eat, and overall just extreme passivity such as my sister continually ripping things from my little paws and me just doing... nothing. So yes, it's there.

But you know... I'm not that kid anymore. I truly believe at this point that my life has been one ongoing regression. In oh, 2004?, I went on a plane to the JFK airport, found my luggage, found a cab, and went to my sister's apartment... ALONE. Now, my mom won't even let me take the bus to visit Sister lest I meltdown or, well, need to talk.

And that brings me to my next thought, which is that I still have no words. I've been told it's food allergies, or yeast, or a neurological problem... I have no idea. Honestly, I think it's just autism being autism.

But it's been extremely interesting to see how people treat a nonverbal person with ASD. Or more accurately, how they don't treat her. They ignore me. They get short with me. In reference to helping the lead pastor's wife with the kids at church last night, my mom told me, "You can't be useful if you don't talk." I feel like she was accusing me of being subhuman, somehow. So, let me say, and let you hear... nonverbal does not mean nonhuman!

And again, in case you missed it.

NONVERBAL DOES NOT MEAN NONHUMAN. I am not less than. I am not broken. I am perfectly, beautifully whole and complete.

Lest you wonder what happened with the kids, it was fine. Totally fine.

So as I was discussing some of this with Leigh via text and mentioned that I've been regressing for, well, forever... she said, but what about in terms of quality of life? Regression or progression?

No question. Progression.

If you want the real, honest-to-goodness truth, I am in no huge hurry for these words to come back. I am comfortable. Happy. As Michelle would say, I am Who I Really Am. As I would say, I am who God created me to be. I don't care how you say it, the idea remains.

Friday, May 13, 2011

A whole new world

Let me set one thing straight: There is such a thing as regression in adults with ASD. I don't care what the professionals say. There is. I have experienced it, and so have many other adults.

The fact is that I am currently experiencing it. I went to bed without words last night, as I frequently do... only today, when I woke up, they weren't back. My BSS typed with me. My CI did what she could so that I only had to shake and not and point (pointing has always been and remains unnatural for me).

The back-burner issue of needing AAC is once again very front-burner. It's urgent. Unless I am at home on my computer, I have no means of communication. My mom gets 5 texts a day, so I can have 5 exchanges with her, and that is all. Some of my staff doesn't text. When we go out, I have no means to communicate.

Please consider purchasing a copy of my book. If I can sell 19 copies, I can purchase a refurbished iPod touch and will have the communication I so badly need. I will even have voice output, which my computer does not have.

Consider buying a copy to give to a child's teacher, BCBA, aide, aunts, uncles, doctor, dentist. If just 19 people purchase a copy, I will be good to go. If there is ANYTHING I can do to thank you (answer a question, help with a behavior issue, offer my perspective, color you a picture, send you a poem on an autism-related topic of your choice, anything!) please just shoot me an email and my brain is yours for the picking.

Book link is here.

Wednesday, May 11, 2011

I'm in a poetry mood

On perspective

Beneath the sun,
Beneath the skies,
Beneath a tree,
A stone there lies.

Dark and drity,
From dusk till dawn,
There in the grass,
Upon the lawn.

Many years
Will come to pass,
Before anyone sees
The stone in the grass.

One sunny day
A human comes
It matters not who she is,
Nor what she's done.

But she steps on the stone.
And open it cracks.
Kicked to the side,
Just one half.

Now nudged into the sun,
The lonely brown stone
With brilliance casts light,
Colors,
Brilliance.
The world now aglow.

One inch to the left,
Or one to the right,
The sun would have missed,
The stone never shone bright.


In case the meaning is unclear here (I'm not sure; it's perfectly clear to me!), the stone is the child with autism. On the outside, all you see is difficult behaviors, imperfect communication, and puzzling repetitive speech and behaviors. But if you find out how to work with that child just so, how to teach him in a way that truly reaches him... well, you may stumble upon brilliance.

Tuesday, May 10, 2011

Why the dichotomy?

Why the dichotomy?

I am often
Only who I'm not,
But you don't care
So long as I have words for you.

You can't understand
(Through no fault of your own?)
That who I am
Is not the me you see.

Do you want to work on that?
They ask.
No, I don't;
I want to be free.

But in this world
The only freedom
Is to be
Everything you aren't.

You, too.

Monday, May 9, 2011

On empathy

Is it in the DSM? I don't think so, but don't quote me on that. It's a commonly accepted belief that people on the spectrum do not have much empathy (the ability to feel what another person is feeling... sympathy, on the other hand, is feeling sorry for a person).

According to Mom, when I was a young teenager she caught a few isolated glimpses of empathy from me... but that was 10 years ago, and she hasn't seen any in a long time.

And to be honest, I wasn't sure I felt any, either. I mean, I kind of function "all about me." I guess that sounds selfish, and maybe it is, but... well, that's how I am despite putting forth great effort to feel for people. I can mechanically ask if you're feeling better after being sick, or I can ask my one staff if her back is hurting from walking too much, but really, it's not so much because I care as because it's what I'm supposed to do.

I asked Mom in the car how old I was when I first asked "how are you?" and she said, "You still don't." Well, yes and no. I certainly ask Leigh what's up (because I want to know what she's doing) and I ask Chloe how she is, but beyond that, I think Mom's probably right. Mom pointed out that I want to socialize, but when someone tries to start a conversation by asking me how I am, I say "fine" and walk away rather than reciprocate in any way. But then... chances are that I don't care how they are and don't really want to talk to them, unless it's one of my "inner circle" people.

Anyway, along these lines, feeling frustrated for myself for not really feeling any empathy, it was time to get Elsie Bo her medicine. I almost (and sometimes do) cry every time I have to give it to her because she hates it so much. And I can feel what it's like to be her and how awful it is. I am deeply empathic for my cat. Also, I feel very deeply for the cats in the shelter, stuck in their cages.

Not sure how to extend this to feeling for people... but I guess cats are a step in the right direction.

Saturday, May 7, 2011

Defies expectation? You tell me

I don't know how to write this post. In fact, I'm downright scared to write it, knowing what may happen because of it. You might never want to hear from me again.

I can understand why they say what they do. They say, "Oh, no, you don't need a cure because you're so high functioning!" "You can't really have those kinds of meltdowns!" "You're so articulate and self-aware!"

And when I tell them, "No, I'm really not." "Yes, I really do." "Only when I'm sitting at my computer," they don't believe me.

I know you see the words and hear intelligence and assume the corresponding behavioral difficulties must be mild. Not really autistic, right? Super-high-functioning-Asperger's, maybe, right? And, truth be told, if you catch me on the right day and if I'm faking it hard enough, you might see that too.

But that's all lies, all fake, all pretend. It's limited. It ends. Then I come home (I'm super lucky if I'm home before I truly fall into the autism... I seem to be losing my ability to "fake it" for as long as I need to be out anymore), and reality hits.

Tonight, after coming home from a fairly slow-paced, relaxing day with lots of breaks, once again someone accused me (wrong word?) of being sooo high functioning.

And, people, I've had it. I turned on the webcam and went back to chatting with Chloe.


I hope, in posting this, that you'll learn a few things.
1. I don't lie.
2. You'll see that awesome gifts and challenges can coexist in one mind and body.
3. Watch your presumptions. You never know what's inside (in the case of "real life") or outside (in the case of the internet).



video


Surprised? I hope not, because this is what I've been telling you is there all along, right? For the record, even my therapist would be surprised by this, because I don't let her see it either... and yes, I sent her the video, because she needs to see it.

Thursday, May 5, 2011

Think Outside the Box!

I am a diagnostic challenge, to say the least.

Currently, I carry an Asperger's diagnosis from my neuropsych (who is probably the most knowledgeable but hardly knows me); one of autistic disorder from my psychologist (who is probably the most well-read and knows me best); and, one of the all-encompassing-yet-generic "ASD" or "PDD" from various other tests I've had done.

And the ultimate diagnostician? The one who really knows me? That'd be my mom, and she says that she can see both, or maybe either, that it depends on the day.

And that's just the autism! Forget about the anxiety disorders, the likely personality disorder, the mood disorder, the eating disorder... yeah, lots of -NOS flying around these parts.

But I'm excited for two reasons. Well, one reason, two consequences.

The DSM-V is well underway. That's the reason.

The first consequence of that reason is that a new eating disorder will be added that fits me to a T: avoidant/restrictive food intake disorder. Basically, I cannot stand the texture of and thus refuse to eat entire food groups worth of food, such as fruits and all vegetables. I was never much for meat and recently went vegetarian. Oh, but I don't eat seafood either. Yes, I get enough protein; yes, I take a vitamin; yes, I find ways to sneak in the healthy stuff (such as V8 Fusion and peanut-butter-banana-protein-shake-enhanced-sugar-free-low-fat-ice-cream). Still, I'm quite limited and generally can't go out to eat unless it's for breakfast (eggs and a pancake, please) and basically can't do any sort of dinner party on any terms. So, I take consolation in that there is at least a descriptor for someone like me... other than "weirdo."

Secondly, part of the diagnostic confusion that is me will be reduced due to the elimination of Asperger's in the new DSM. Look here for the new criteria. I hear that a lot of people will lose their diagnoses under these criteria, and that worries me. For me, well, I had a hunch and confirmed with Mom... if you look at the severity criteria, I'm not mild but I'm not moderate. Again, it depends on the day, and yet again, I see diagnostic wars going on with my team. There are days, even weeks, where by no stretch of the imagination would you call me mild anything... then there are bits of time where I'm like, "What autism?"

(For the record. when asked if the autism is ever invisible, Leigh says, "Yeah, when you're trying to hide it on a good day." Fair enough).

Part of me wonders when the criteria are going to start to reflect real people living real lives, you know? Oh well. We're partway there.

Wednesday, May 4, 2011

Talk of a cure

I'm not so eloquent tonight (by the way, I just had this all typed out, and my twerp of a computer deleted it, not to be found with control + z. If it does it again, I'm giving up.). I had Star (MH case manager) for an hour this afternoon. Then, I drove for 45 minutes, including on the highway, down to the Pitt study. Did computer work which boggled my brains. Then sat through a long, boring group, which I mostly spent spinning in my chair. Then drove back home in traffic. So, that, my friends, is how you get "done."

But something's bothering me. I have a secret. I thought maybe you'd want to know.

In my online world (which, I hate to say, is far richer than my "real" world), I am once again faced with a dichotomy in the autism community.

Camp A, mostly parents of so-called "low functioning" children, is all about curing autism.

Camp B, mostly the "Aspies," as I call them, is all about neurodiversity. Some even claim that Asperger's is the next step in human evolution... yeah; no comment there.

I've long preached to each his own, but I have a confession to make: I kind of bristle when talk of a cure comes up.

First of all, I'm not as so-called (I refuse to use such terms without a qualifier of some kind) "high functioning" as a lot of the "don't touch me with your cure" people are who are out there. I have been lurking and posting around Wrongplanet again, and I hate to say it, but there is just no comparison between the lives most of those people describe and the one that I lead.

I mean, I lose my words with almost daily frequency. I rock, even in public. I bang my head, I bite my hands, I have ugly meltdowns. If in a spinny chair, I spin and spin and spin. I stim verbally with my repeated phrases, though oddly enough that is confined to my apartment. At this point, I can't go just about anywhere without my mom or staff. Not even to stop for gas.

And yet, I repeat: Cure ignorance, not autism.

By saying that autism needs to be cured, you are telling me that a very, very fundamental part of who I am needs to be eradicated. And what would be left? You could not cure the autism and expect to have anything left. Kill autism, kill me.

That said, I know I need a lot of help, and I know that that translates into that I cost a lot of money, made even worse because I know that I'm not working... and, well, I struggle with all of that. And that is why I seek treatment, therapy, ABA, community inclusion, all of that good stuff. So that maybe, someday, I will be able to work.

So, yes, by all means, supplement, treat, build, ameliorate... but eradicate? To what end, I ask?

Far be it from me, or from anyone, to tell any parent that his or her child should not be cured. That's not up to me, and I will not tell anyone else what I think they should do. I don't like it one bit when others try to push their beliefs on me, so I'm not about to do it to anyone else.

But me? No thanks. Cure ignorance, not autism.

Saturday, April 30, 2011

Please, spread the word

So, it's 11:40 PM around these parts. Do you remember the last day I was up this late? Okay, so actually, I do (January 4th-5th, 2011)... but that's beside the point. The point is that this is late for me. I've been out almost nonstop since noon. One panic attack and zero meltdowns later, I'm back at home, having swum, worshipped, shopped, shopped some more, visited with Heather and her cats, and who knows what else.

I have hardcore rituals that I go through, step by step, every time I sit down at the computer. The list of websites to check and updates to peruse is extensive (8? 9? sites), but tonight I will skip them all. Except one. Okay, two, because I did check email. I will come here and only here because what I have to tell you cannot be held back for one more day. It's that important. Your task is to spread the word on this one... tweet, Facebook, blogs, verbal, I don't care. I don't care if you share the post or just the sentiments behind it. Tell your boss, your neighbors, your educators, your local politicians, your hairdresser. I don't care. Just tell.

So here goes.

At least for me, disclosing to someone that I have autism requires a very basic amount of trust. I won't tell just anyone. Yeah, sometimes I say it when I shouldn't, and sometimes I don't say it when I should (remember a few posts back?). Come to think of it, I frequently get it backwards. But if I say it, then on some level, you have some credit with me.

People respond in a variety of ways, but frequently, they say this or something like it: "You don't look like you have autism." or "I never would have guessed." or "You must be very high functioning, then."

Now, I'm not going to bash anyone for doing this, because first of all, they usually mean it as a compliment. Secondly, it's just a lack of education on how it feels to receive such words.

To be frank, I went through 21 years of sheer hell before I got a diagnosis and subsequent medication, therapy, services, etc. Horrible meltdowns, a ridiculously overwhelmed sensory system, lots of self injurious behavior with the scars to prove it, suicidal thoughts and plans, tons of bullying, periods of random nonverbal times that no one understood... you get the point.

Then, even my "good" (read: not necessarily good in terms of happy but in terms of functioning level) days are hard won. I. Work. My. Butt. Off. to come across as "normal" as I can. I bite my tongue so hard it bleeds so that I don't have to wear headphones in church. I talk until I literally have to excuse myself to gag over the toilet so that I don't have to be nonverbal and stand out. I go into Target with Heather, because "normal" people do that and like it, and have a panic attack, sweating and shaking, but I put my hands in my pockets and put my hair up to hide it. All today, and today was a "good" day.

And yet today, someone (I won't say who it was, but believe me that if anyone should know better, it would be this person) told me that had they not seen my diagnosis in writing, they would never think that I have autism.

Can you say invalidating? What I've been and still go through because of this disorder... I don't know. I don't really have the words on this one.

Now, Debbie Downer as I might be at times, one thing I've learned and hold to is that I don't like to say "don't do this" without following it with a what you should do.

When someone tells they have autism (or, heck, anything!) and you're surprised, do not say "Really?" or "You don't look/seem like you do" or "I wouldn't have believed that!"; rather, say....

(Do I have your attention?)

Say, "What do I need to know about how it affects you?"

No pity (and if I seem like I'm asking for it because of my lists of what I deal with, just, no. I'm not.). No babying. No mollycoddling.

Education.

So, now you know, and now I turn you lose to tell anyone who will listen.

Friday, April 29, 2011

Echopalooza

Realizing that my verbal repetition probably far surpasses that of most people's upon entering their apartments/houses, I grabbed my camera today to record. I mean, it didn't end when I stopped recording, but I didn't want to kill your ears. In the interest of total honesty, it's a half hour later and it's still going on. The beauty of it is that the cat doesn't care one bit. I'd guess that 99% or more of our conversations revolve around these same two or three phrases. And, as you can see, Elsie knows exactly what to expect and how to respond. That's my girl!



video

Thursday, April 28, 2011

#Me1Panicattacks0

The hashtag is a... what do you call it?... that I'm (actively) on Twitter. @autisticspeaks. I can't promise I'll be interesting, though...

So, lest you think that because I have stopped complaining about them that the panic attacks have ceased, let me put your mind at ease; they are alive and well. The tricked me into a false sense of security when they abated for a week or so... but now I've had... four, I think, in a week.

I went to the big W today to get goggles (because Karen's taking me swimming Saturday!). You know, the ugly mask kind? Yeah, because I can't handle ANY water in my face. Anyway, to get those, and I needed toothpaste. For anyone who cares to know, I still use the bubblegum kind, because the minty kind burns my mouth. Dentist said kid kind is fine, so I stick with that. Oh, and I needed more earplugs.

And I got in and out of Walmart in like 10 minutes (even found a post-Easter-clearance duck, for me, and frog, for my therapist), with no panic attack, and was very pleased with myself for my accomplishments. All that for $16? Yes, very happy. A duck :)

Came back home and had a walk down to the thrift shop to poke around, then on a whim walked a bit farther (still no street crossing, as I don't manage that well and I live on a highway) to the 7-Eleven and got a Diet Mountain Dew (for the record, the flavor of the scent of the store seeps into the soda and yes, I can taste where my Diet Mountain Dews are from, and this one tasted decidedly 7-Eleveny. Not good. Have you ever heard of such a thing?!).. then walked back up the hill.

And now that I've digressed like six times, well, after that, I headed to Heather's to babysit her boys for a few hours so she could go to a meeting at church. Have I mentioned that I love those boys? Because I really do.

Got to Heather's an hour early for the sake of being piled on by her two cats in the nicely cool, finished basement. Boys in front of TV (hey, they're sick) and Heather headed out. All was well.

Aaaaand, cue the panic attack. I mean, seriously? It's Heather's. I couldn't be more comfortable anywhere (except maybe my own house) than Heather's. Her house is even better than my parents' house, because there are cats! And I started to get the telltale hot flash. Then the sweating. Then the shaking. Then the dizzy... ugh.

So what did I do? What I usually do when something's wrong and I'm at Heather's. I left A (5) in front of the TV and took D (2) downstairs with me to do kitties. He was less than thrilled, but he's cooperative so it was alright.

Well on my way to calming down, I brought D back upstairs. And maybe that's when it happened, in the two minutes we were downstairs. Or maybe it was when I went to cut up strawberries for D. Or maybe it was when I grabbed two bites (literally) to eat myself. I'm not sure, is the point.

A took D's BRIGHT BLUE blueberry juice, and I guess he shook the cup. When I came back in I saw D doing it and told him to stop and had him clean it up. At some point, I saw the spots on the floor... as in, big spots. More than a foot in diameter. On a cream-colored carpet. And remember, I was still kind of halfway panicked.

So I emailed Heather and found the rags and the carpet cleaner. I had A do the smaller spot while I did the larger one. Wondering, what the heck am I going to do with him until Heather gets home?, and not being at all one to raise my voice or scare children... I had an idea.

"A, I will not yell at you, so stop hiding from me. You will go upstairs. You will put on your PJs. You will brush your teeth, and you will get into bed and wait there for your mom to get home. D will stay down here and continue to watch TV (A's favorite thing in the WORLD) while you lay in bed."

Oh, I got him. He cried. He screamed. He begged.

I shook. I sweated. I was dizzy. I was so, so, so overheated. My head got fuzzy...

And Heather came home. I flew downstairs to lay with the kitties to calm down (only after explaining my state, and A's, to Heather) and I guess she had A come down for a snack. Don't know if she yelled, or punished, or figured he'd been punished enough, or what.

But me? I'm pretty impressed with myself. I think I handled the situation really well (I've never punished a child!). I also think I handled my panic attack well.

Oh no. They won't stop me!

And A? He's over it. Told me goodnight and thanked me for coming.

Wednesday, April 27, 2011

Speechless

It's a joke, right? The autistic girl is speechless. I mean, I spend a lot of time speechless... like right now. Can't even talk to the cat!

But today I got caught off guard, big time. Even Laura (CI... aka, aide) was caught off guard, and it's sorta her job to know what to say in social situations, right? But, oh yeah. Caught. That was us.

Laura and I go to a (huge, 100-women-strong) Bible study every Wednesday morning for a couple of hours. First, there is large group time, where we talk then sing then talk then pray then talk. And, aside from a few words with Laura or my good friend Heather... I don't say much. Today, I quietly talked to Laura until she got up to go to the bathroom, then I kinda sat there and went into the infamous Lydia Land (maybe I was stimming a bit, too?) while the ladies at my table gushed about... something. As I got up to leave when the lights blinked (and let me tell you: no one EVER gets up to leave on time!), one of the ladies apologized for, well... kinda ignoring me. Not that she needed to- I need to learn (uh, right, somehow) to jump into conversations (how? when I can't even follow them?)... but yeah, I wasn't remotely upset with them. I was happy to zone out, really.

So anyway, Laura came back and we headed to the room where our study (about 10-15 women) takes place. We were, of course, the first ones there, with the exception of one other lady who apparently had been waiting there for a while. So she chatted with us. I don't remember much... I don't think I chatted back... but I do remember that the woman leading the group gave me a sticker for being on time, and I was happy.

Then, half-listening and thinking about my sticker, I hear the lady (the only other one who was in the room) ask, "So how do you two know each other?"

Uh.

Yeah.

Come on. We'd practiced this. We'd rehearsed. We knew what to say.

So what did we do?

I looked at the floor. Laura looked at the ceiling. Neither one of us said a word.

The woman said, "So... you just met?"

"Yeah."

"Uh huh."

Awkward silence.

I think that's when other people started to filter in.

Now, if you know me at all, you know how I feel about lying. And in my world, misleading = lying. So, knowing full well that she had most likely entirely forgotten the awkward exchange...

I emailed her, acknowledged that I knew it was no big deal to her, but that I felt uncomfortable in that I had mislead her... and here was the (very brief) truth: I have autism. Laura is my aide.

End of story.

Now why can't I say that out loud?!

Tuesday, April 26, 2011

Come join me!

I'm forever fussing that I wish that people would type with me (you can ask Leigh on this one).

During one such fuss today, I got an idea.

How many people on the spectrum must there be that feel like me?

How many parents must there be that wish they had a real-time outlet?

So I created a chat room! It's here: www.tinychat.com/autisticspeaks. Come drop in and say hello and see if anyone's around!

Sunday, April 24, 2011

A bunny who is funny

Sometimes I hear the myth that people with autism don't get humor. Let me set one thing straight: I most certainly, definitely get humor. Actually, I think I can be pretty funny, and I know some other people who would agree with that. Now this is not to say that I find things funny that is typical for people my age... but I do have a sense of humor.


When asked by Mom what I wanted in my Easter basket, I requested a small bunny or duck stuffed creature. I have been eyeing the ones at the grocery store every week for quite a while, and she knew this.


Well. For whatever reason, she waited until yesterday to choose my creature. Why? I don't know. She's quite a busy Mom, for one thing. Also, I don't think she's been to my grocery store where I oogle at the stuffed guys in many weeks, now that Laura takes me. Whatever the reason, by the time she got there, things well pretty well picked over.


She settled on this little guy, being practically the only one there:





First I thought he was kind of ugly. Then I didn't know what to think. But now that I've been lugging him around with me for a day or so... well, I think he's hysterical. Hilarious. I mean, whose idea was that? "Let's make a bunny, a cute little bunny, with a ridiculously large tail."


So, he is Funny Bunny. And I giggle every time I look at him.


But hey, that tail? It's a good handle!


Not to mention, if I poke him at Elsie, she tries to eat his face... which is also rather funny to watch.

Friday, April 22, 2011

Sparkly shoes and kitty cats

In any Top 10 Reasons Why Holidays Are Rough list, I guarantee you won't see this.

"Because I... don't get it."

Now don't get me wrong; I can tell you the definition of "maundy" and even the Latin word from which it comes, and I know the stories of Good Friday and Easter...

But something's missing.

Good Friday is the day that we remember that Jesus died on the cross for our sins, right? But first of all, it seems a little random to me, because we don't actually know what day Jesus died. Then, even if we did, we don't remember exactly every year but rather every sort-of year. And then, a year, well, that's kind of a human creation that designates a periodic passing of time, you know? It's not an objective, imposed-upon-us, kind of thing... a year on our calendar is 365 days, but on other calendars it was other amounts of days which had other numbers of hours in them... so really, it's kind of random.

And then, just because I remember doesn't necessarily evoke any certain emotion in me. I remember that my grandma died. I remember that my Jesus died. I remember that I went to Disney World. But there is no emotion connected with any of those. They just... are.

But right here and now? Now there's some happy! I have a cat! I got sparkly shoes today! I went to the movies! I didn't have a panic attack at church (though I think I sat and prayed for a total of maybe, maybe two minutes)! New staff person was good and "loves" my cat and thinks she's "beautiful" (her words)! Tomorrow I will meet a service dog trainer and interrogate him... I mean, ask him questions... about his program and his dogs! And Easter Sunday? More happy, because I get to spend an extra whole day with Mom! Not just Saturday, but Sunday too?! Too good to be true. So, I know Easter is for remembering the Resurrection... but really, I'm more focused on seeing Mom.

I feel like this doesn't quite make me the best Christian. In the past a friend has told me that God would understand that my limitations because this is the way He created me... but I don't want Him to need to cut me a break. I want to just do what I should do, like everybody else.

But... I have a sleepy cat and sparkly shoes...

Wednesday, April 20, 2011

In good company

On second thought, check this out!

If Johnny Depp does it, it must be cool... right?

Tuesday, April 19, 2011

Seeing the world through blue colored glasses

I went to the opthalmologist for my biannual check-up on Tuesday. I asked about glasses that filter out the fluorescent lights, since they cause me so much grief, and he recommended lenses with a blue tint. I asked, "How blue?" and he said, "Just a little." So, I went for it.





You call this "a litte" blue? A little? They are practically neon.


I'm afraid to stand out like a sore thumb. But we bought them, and, well, I think I'm stuck with them. I'm considering wearing my old glasses most of the time (in which I see about 20/75... and yes, I drive in those) and just putting these on when I really need them. I feel bad because we picked out the frames and Mom paid the extra and everything, and I thought they would be good.


I know what you're thinking. It's the same thing my mom would say if I told her how I feel. "Who cares what other people think? You have to be comfortable."


I'm sorry to say that I, for one, care very much. I like to fit in. I don't fit in enough because of who I am... the last thing I need is neon blue glasses to make me stand out even more.

American Public Media article

Check it out here.

It's perfect! Andrew did a fantastic job and I am so thankful that he took the time to hear us!

Monday, April 18, 2011

Do you hear me?

So, Laura and I were doing our usual Monday afternoon at the shelter... and can I digress for a minute? I pet the nicest dog. She was a medium-sized black lab (mix?), 7 years old, named Cassie. She stood in my lap and put her head on my shoulder and just sat like that. She didn't smell bad, she didn't shed, and she didn't bark or even whine. I hugged her and kissed her and pet her and could have stayed there forever. Mom and I will meet a potential trainer on Saturday morning, and I want to ask him if he has dogs like Cassie...

Anyway. We were getting ready to leave the shelter, and my cell phone rang with a weird number. That happens about once a week, and it always says some pre-recorded message about "my credit card," which doesn't even exist. I almost, almost didn't answer. And then I did.

"Hi, Lydia, this is Andrew H. from American Public Media in St. Paul? I read your responses to our questions online about autism and employment and I wanted to talk to you some more... do you have some time?"

Somewhere in there my phone died and I relocated Laura and I to outside where there is service, and he called back. We talked about talents and weaknesses and barriers to employment and past jobs and bosses and all that jazz. When asked about weaknesses, I said something about communication, and he said, "But you sound so very articulate."

I laughed and asked Laura to remind me what it was I'd tried to ask my mom earlier when she cut me off and said, "Lydia... I have no idea what you're saying." So, I told him about that.

Then, conversation with Andrew over (I'll send you the link to the story he does whenever it's finished, k?) I got home and tried to relay the story about the interview to my sister. It was kind of funny, because once again, she was confused and I couldn't straighten it out.

See, the thing is that I make perfect sense to myself when I explain things. I guess I lack the theory of mind to figure out what exactly the listener does and doesn't know without me saying it. As I try to think that through now, I'm boggled by it.

I guess my autism could be described by awesome gifts coupled with surprising deficits. A lot of theory of mind-type things I can understand in theory (i.e., you and I can have opposite thoughts about the same subject), but in practice, I don't do so well with it.

Andrew did ask me to describe "where I am" on the spectrum... and I said well, kind of everywhere... I like to say usually-high-functioning-autism.

Here; that's where I am. I'm here.

Saturday, April 16, 2011

Things I'm known for

Let me first point this out, lest you overlook it: the following requires a great amount of theory of mind to write :)

If you asked other people in "real life" what they think of when they think of me, they might say cats, and... oh, I'm getting stuck already!... Diet Mountain Dew, and purple, and Disney, and Elsie, and candid honesty, and autism... okay, I think that's enough to make my point. This is racking my brain!

My point is, though, that people will probably never say anything like "assertive." Or "stands up for herself." Yeah, not much of that goes on here.

I've been called the r-word and I know people who have intellectual disabilities, and the few times I've heard the r-word said in public, I couldn't get my words together fast enough to defend them, me, us, anyone. I'm pretty ashamed to admit that, but it's the truth. And if I can't stand up for others, imagine trying to stand up for myself. It's even worse.

But I've decided something. I've figured out the words, so that won't be an issue, and this is what I'm going to say...

The next time someone either asks, "But don't you want to/think you should lose weight?" (and we're talking not doctors here. My, uh... former... BSS is the most recent example.), I'm going to say: "Actually, I'm beautiful and perfect just the way I am. My nutritionist and doctors say that I'm healthy. If people disagree, I guess it's going to be their problem, because I'm happy. But thanks for your concern."

Enough said.

Thursday, April 14, 2011

In the meantime, check this out

Well, I don't know what to say. That little "write, write, WRITE!" voice is sounding in my head, but I just don't know what to say, so I can't write.

But in the meantime, check out this site (fixed the link, I think) about 50 blogs you should bookmark during Autism Awareness Month. Scroll down, oh, halfway?

And here come the words, now. You see, my goal is to be heard and to make a difference. It almost sounds silly, doesn't it? An autistic girl who doesn't work, can hardly volunteer, and can't leave the house without help... wants to make a difference? Why, yes, I do.

I want to have a voice, if only behind my computer. When I was in partial, we did a thing on self esteem, and we read a piece that said things like, "I have a body, but I am not my body. I have a mind, but I am not my mind. I have thoughts, but I am not my thoughts." I left wondering... well then what am I? But I just found the answer to that question. I am my words. My words are me.

Monday, April 11, 2011

Dignity

Cure ignorance, not autism. I thought it should go without saying, but apparently I was wrong, so I will say it now: People with autism (adults and children) deserve to be tread with the same level of dignity as everyone else. That's not to say that people without autism are consistently treated with dignity, either, but that's another issue that I can't begin to touch here.

So, how do you treat a person with autism?

Respect our differences! Please, quit trying to strip us of every little thing that makes us autistic. Who cares if I stim when I'm alone in my apartment? Heck, who cares if I do it sometimes in public? It's part of who I am; leave it alone. Maybe, instead of getting rid of the stimming, you can look at why I'm stimming and try to change whatever is making me uncomfortable.

Do NOT talk down to us. In my research study, all of the researchers talk to us like we're children. Now, I'll give you that in many ways, I am a child... but they speak to us in a way that I don't even talk to my friend's 2-year-old. I am a highly intelligent human being... I would venture to say that most of us in the study are more intelligent than the researchers themselves... please, treat me like the intelligent person that I am.

Involve us in decisions about us. Whether it's a behavior plan or a living situation or a huge, nationwide organization that seeks a cure for autism, we deserve to be involved in these decisions.

Respect our limitations. It's immensely frustrating to be told that I'm making it up or to get over it when I can't do something.

Back to the cure issue... first of all, don't assume that it's either good or bad. Some people want a cure and some do not. However, the way to go about finding a cure is certainly not to research prenatal testing. Why? Well, if a parent finds out that her baby-t0-be will have autism... how many will abort? Right. Not the way to do it. This world needs people with autism.

Saturday, April 9, 2011

Why today was good

Why today was good:

I went from having no one to train my service dog to having OPTIONS! And all right near home!

I went from having nowhere to get my puppy to finding an awesome German Shepherd breeder just 2 1/2 hours away who even provided references for people who have service dogs from her!

I realized (after what, 8 or 9 months of it happening) why Elsie wakes me up at random times for seemingly no reason. Ready for this? I think she knows when my blood sugar is out of whack. Seriously. It clicked when she woke me up last night and I was 332... then I realized that when she wakes me up, I usually realize I'm high or low. How cool is my cat?!

I watched this video. Go watch it. I mean it. Be prepared for tears... I almost cried, and I NEVER cry at things like this.

Mini Addy came. You see, at 23 years old (plus the fact that I'm super sensitive to how people perceive me), I can't carry my big dolls around with me. So, I wanted one of the 6.5" dolls. Not able to afford the $22 plus $5 shipping, I posted on my message board (for adult collectors of American Girl dolls) and asked if anyone could send me a mini, any mini (though I dreamed of Addy) for $20 shipped. When no one responded after a while, I found mini Nellie online for $18 shipped and settled. But then, someone got back to me and offered me her Addy for just $5. Well, of course I couldn't say no because how often does something like that happen? So Addy came, and she's perfect and adorable and I love her. We hung out all day :)

I got a sock-cat kit. She's a sock monkey, only she's a cat! Mom said I could get something to sew at the fabric store, but rather than more doll clothes right now, I felt like this cat. And we had a coupon, so I got her for $6!

Mom said the government didn't shut down, which is exciting, because a lot of people's livelihood comes from government money. Namely, our soldiers deserve to be paid! I don't get much into politics because it upsets me, but honestly, it doesn't take a genius to figure out that our soldiers deserve to be paid. These men and women are fighting on the front lines risking their lives... and simultaneously worrying that they could lose their homes or that their families could go hungry or their autistic children will lose services? No. Just, no. I almost HOPE my SSI gets postponed, because I would feel bad getting awarded my SSI money when soldiers' families are doing without.

I spent the whole day out with Mom (like, 6 places or something like that, including church) and I'm not done! I feel okay!

I think Michelle (www.fullsoulahead.com) calls this a rampage of apprecation... I think I've got that right. Well, anyway, that's mine for today!

Friday, April 8, 2011

Done.

I know I say this a lot, but I'm so done.

To update you on the email to the woman in charge of the conference, basically, she felt badly and had no idea how it came across. She said of course I can bring someone with me at no charge (though I'd told her that at this point, I don't think anyone can come). In light of that, she offered a volunteer to sit with me for the day. Other years, that might have been okay, but not this year. Not now. I'm too... something... to be able to sit with a stranger for that long. Or any bit of time.

In other news my frustration tolerance is nil. In the time I've been writing this, my computer has deleted everything I've written twice, made my font bold twice, brought up a new page, and I forget what else. I can't do anything on here, on my lovely new computer, without things going nuts. There is no virus; it has done this since day 1 and gotten increasingly worse. I scream, and pound on my desk, and bite, and everything else, because I can't handle it.

Also, did you know that the ONE place that will train a service dog for an adult with autism is 800 miles away and wants $15,000? Yeah, I don't have that. There are plenty of places that will do it at no cost to you, only they only train for children. There are places that say online that they do autism, and when you call, they don't. At this point, I'm planning to apply for a social support dog. He/she wouldn't be able to go out with me, which is kind of half the purpose of the dog, but would be able to be a well-trained dog at home with me.

My BSS is due to come at noon. She's loud. And she asks me very personal questions that I'm not comfortable answering, especially when I've only met her once. I guess it's her job, but she seems to have no sense that they make me uncomfortable. She wants to come to activities with Laura and I, but honestly... I make a HUGE effort to blend in as well as I can. Huge. Having a CI with me (granted, one who works really hard to blend in too) makes me stand out more. Having a CI and a BSS who stands there with a clipboard? No thank you. I'm not comfortable. It's going to be an interesting meeting with her when I'm currently unable to speak.

Anyway, sorry for the meandering and disorganized nature of this post, but that's me right now.

Wednesday, April 6, 2011

Have soapbox, will... hide behind computer and write?

Okay, blogger; this is war. Or, really, I'm just getting rather annoyed at your spacing, or lack thereof. Have you ever tried to read one of your own posts, blogger? Because, really, they kind of stink.



I am blessed to live in a city that is on the cutting edge of autism research in a state that provides awesome services for adults (no housing help, but that aside, I have it good). I mean, there are definitely still issues on all fronts, but people in my area are really trying, and I appreciate that. We're on our way, if nothing else.


So, next week in my city there is a big (in terms of big deal, not sure how large of a turnout there will be) conference about "Autism Through the Lifespan." There will be speakers and workshops and the like. And the coolest part? They so want people on the spectrum to attend that we are admitted free of charge!


Great! Right? Well... Yes, I may be free of charge... but my autism is such that I require either my mom or my CI to be with me if I am to sit through and thus getting anything from this conference. I mean, I can't even get through my hour and a half long bible study without a break or two. So, in order for me to bring Laura, it would be a $95 admission. I can't ask Laura to pay that. Her company has no allowance for working with me. I certainly can't afford that, and even if I could, it's against company policy for me to pay for her.


So, you see, I really can't go to the conference.


The message they are sending is that they want people on the spectrum to attend... but only the most independent among us. How is that supposed to make me feel?


I said I wouldn't write the person in charge an email. For over a week I held out. And then I fussed in my group today (at the study I'm in that I complain about all the time), and someone said, "But you know, there may be others in your position too." And that did me in. I came home and wrote to the president of the organization that hosts the conference.


Because really, how far is it? It's not. I matter too. We all do.... not just those of us that give autism a good name, but all of us, on all kinds of days, at all levels of independence. And an organization specifically for people on the spectrum should be the first in line to promote that idea. I'll update you on if and how she replies...


Editor's note: Thanks to Adelaide (see comments) I think I found my way around whatever setting got screwy! THANK YOU!

Monday, April 4, 2011

One more April 2nd post for you

I consider April 2nd something akin to my birthday. It's "my day." It's a day of celebration, in a way, that I am who I am, that everyone on the spectrum is who they are, and that that's okay. It's a day of awareness, which means moving toward acceptance. It's a good day. It wasn't enough to wear blue, though. I mean, I could be wearing blue because I grabbed blue first thing in the morning, you know? So I got a blue t-shirt and wrote on the back, "Ask me why I'm wearing BLUE." And don't you know, they asked. In the bathroom at the Original Pancake House, I was washing my hands (For the third time tha thour. Fun fact: My mom jokes that we know where every bathroom is this city is, because I. go. constantly. Hey, I drink a lot, okay?), and the woman behind me said, "Okay, so why are you wearing blue?" and the woman beside her said, "Yeah, why?" Disclaimer: I never said I could speak. Writing is my thing. "I'm wearing blue because today is World Autism Awareness Day." And I forget what they said, because they both chattered at once, but now two more people knew. And at my favorite store (Joann Fabrics), a woman behind me in line at the cutting counter asked. And I told. And she said that it was cool. Okay, so I didn't give a speech that a thousand people heard. I didn't change anyone's life. But you know, that's three more people that heard something about autism that otherwise may not have. If you ask me, that's called success.

Sunday, April 3, 2011

Show me your blue!

Sister (last March) with some blue balloons
Leigh's aunt, decked in blue


Me, 18 months, with blue-green blankets

A very good friend's son, age 2 1/2, conked out in blue yesterday
Me in my blue with two of my girls in blue


Okay, I know this is semi repeat, but I couldn't resist. She looks hilarious.


A friend who has known me since before I was born changed her profile pic to blue!


Leigh with cute Quita showing off her blue.

Friday, April 1, 2011

Why I wear blue

Please, please excuse the spacing issue. I tried to insert some squigglies to improve readability, but I'm not sure it's helpful at all.~~~It's not about politics.~~~It's not about Autism Speaks.~~~It's not about awareness (just ask Jess over at Diary of a Mom). ~~~ It's not about treatments. ~~~ Or cures. ~~~ Or not-cures. ~~~ It's not about yesterday. ~~~ Or tomorrow. ~~~It's about today. What can we do today to bring people to greater acceptance of those who are, well, a little different? What can we do today so that one little boy or girl won't be called weirdo, freak, or the r-word (yes, I've been called them all and more). What can we do today to make it okay for children and adults, on the spectrum or not, to like what they truly like and do what they truly enjoy? ~~~ It's about Riley, and Brooke, and Hallie, and Ollie, and Chloe, and Kate, , and Bear, and Scrumpy and the thousands of children and adults on the message board whose names I don't all know, and yes, it's about me.~~~ But it's also about you. It's about my mom, and Leigh, and Heather, and Chloe again because she has the unique experience of having autism and knowing someone with it, and the people who work with me, and my pastor, and Sister. It's about real life friends and online friends and those (Chloe, Molly, Kate, Amanda, Michelle) who are gloriously and perfectly both, all at once.~~~It's about giving us a voice who can't always, or ever, or reliably speak for ourselves. Those of us to have no words, or use PECS, or sign, or type, or have some words, or sometimes have words but sometimes don't, or have tons and tons of words but can't use them in a way that other people can understand us. Or those of us for whom more than one of those are true.~~~It's about acceptance. It's about hope. It's about friendship, and motherhood, and fatherhood, and sisterhood, and brotherhood. It's about the fact that you believe that I am worth it. Because I am. And you are. Your child is.~~~ So this is why I wear blue, both today and tomorrow. I can't change my bulbs, but I can wear it, and my back says "Ask me why I'm wearing BLUE." So far, no one has asked, though I will say that I spent most of the day so far with my back in a chair against the wall. Half the people at partial wore blue. My therapist wore blue. My pastor will wear blue. My friends will wear blue. My mother will wear blue (because I won't let her leave the house otherwise!).~~~ Feel free to snap a photo and send it to me of your blue. I'd love to have a little mini compilation of people in blue shirts on my blog... but I can only do it if you wear blue!

Wednesday, March 30, 2011

Living in your sweet spot

In my women's bible study, I'm in a class based on a book called S.H.A.P.E. by Erik Rees. It's about discovering your spiritual gifts, heart, abilities, personality, and experiences; putting them into a put and mixing them around to come up with your "shape;" then using that shape to fulfill your Kingdom Purpose. I missed the first maybe 8 week sof the study due to my hospitalization then time in partial, but I've been back for a couple or three weeks now. Today, we talked about the movie Chariots of Fire (while I am not old enough to remember this movie, clips of it were shown at various presentations throughout my 4 years at a Christian college). We talked about the statement that Eric Liddell makes- "God made me fast, and when I run, I feel His pleasure." Pastor Betsy asked us how we would fill in those blanks. I said, "God made me see the world uniquely, and when I write, I feel His pleasure." What I really meant is that God made me with autism, but I was too shy to say that in front of a room full of people, so I more carefully worded it. My point remained, however. As we were talking about this concept, this statement, one of the things Betsy brought up from the book was the concept of a sweet spot. In case you don't know, a sweet spot is the spot on a bat or racquet where, when the ball makes contact, it goes the maximum distance with the minimum amount of effort. Applied to our lives, the sweet spot is then the place we fit in where we get the maximum effectiveness with the minimum amount of effort. Make sense? Well, this is where things begin to get sticky, and I begin to get stuck. I'm not sure what my sweet spot is outside of my typing. As I see it, I make the greatest amount of impact through my blog, message boards, emails, and they require little to no effort. But is that... real, I guess? I know it's not right for me to compare myself to other people. That's a very dangerous game. I suppose the more helpful way to think of it is that there was a hole in the autism community that my blog and book and writing was able to fill. It made me think that I could live in my sweet spot more often. Why do I force words out when if I just waited until I got home, I could type them? If I get SSI (hearing June 17th, in case you were wondering) my big purchase with the back pay will be an iPad or iPod touch (haven't decided which yet, leaning toward the iPad though) so that I have portable typing if needed. I mean, yeah, a lot of times I'm able to force through it and talk, but why? It's really uncomfortable. Sometimes it even makes me sick. I do it to seem more normal, I suppose, but is that really the goal? And at what cost? And what about cats? I love cats. Okay, so I can't really be more involved with cats than I already am, but they sure are part of my sweet spot. Can I say it again? I do love cats. And my dolls! Oh, do I ever love to sew for them. If I thought anyone cared, I would post pictures of them in some of their outfits that I've made, but I don't think anyone will be interested so I haven't so far. I get so much enjoyment out of my 3 dolls and their clothes and their accessories. I have babysitting money to spend on new things to sew this weekend, and I can't wait! The most recent addition to Lissie and Zoey's wardrobe is jeans... Lissie's came out more like jeggings or skinny jeans, so I made Zoey's bigger and they fit well. So do Lissie's, I guess, once they're on... which isn't an easy task. I could continue, but instead I'll encourage you to think about your sweet spot. You were created with specific gifts, talents, and passions. How can you best use them?

Sunday, March 27, 2011

The biggest decision I've ever made

Editor's note: I can't get the spacing to cooperate... I'll mess with it again later and see if it works. Sorry it's obnoxious to the eyes... just bear with me! I'm trying to think of a decision I've made in my life that is bigger than this one. It seems like anything that compares in enormity was a decision that was made for me or one that was so obvious that it didn't involve any thought. An example of this is where I wanted to go to college... there was one school, and only one, that interested me. It was rather difficult to get into, but if I didn't get in, I would reapply each semester until I did. Thankfully, this turned out not to be an issue. Anyway, the Big Decision is whether my next animal will be a cat or a dog. The one I choose will be my best friend for the next 10-15 years. What's the difference? you might ask. Well, let me tell you! I am strictly a cat person. I love cats. I am obsessed with them. I am more than obsessed with them. Cats are my reason for living, quite literally, sometimes. Don't want to eat? Have to, because my kitty needs me. Don't want to get help? Have to be healthy, because that cat depends on me. I need, need, need cats. But then... a dog, if I got one, would be a service dog. He or she (I hope she) would go everywhere with me. She would not be pet but rather a friend in fur, kind of like Elsie is now. I could depend on her and she would keep me from panicking when I go out. She could really, really change my life. Could I learn to love a dog (note, I do not need to learn to love dogs in general, just my own, one dog) as I love Elsie? Is that possible for me? This is a very hard decision.

Saturday, March 26, 2011

Elsie mini photo shoot

Speaking of Elsie... my new BSS called the other night and we talked for a while. She seemed nice and everything, but right at the end when I mentioned Elsie, she said, "Oh, can it go away when I come? I'm allergic and I will sneeze."

Problem 1: Elsie is decidedly a SHE, not an it.

Problem 2: If she wants me to talk to her, no, Elsie cannot go away.

Solutions? First, I'm going to see if Els will simply go sleep in one of her boxes in my room, then I'll quietly step out. But if she starts to fuss and wants to come out, I am not going to keep her shut up.
If she does fuss, maybe we can go across the highway to Starbucks to meet.
If it's too public, maybe we can go to my mom's.

My BSS is supposed to be really good. She has a 21-year-old son with Asperger's, so I hear that she "gets it." I don't want to give up on her, but this is a big problem...

Anyway. Pictures.









Friday, March 25, 2011

Dear Autism

Dear Autism,



Though we've known each other for 23 years now, it's only been 27 months since I came to know your name. I now know that you have been the cause of many highs in my life. You were there when I attained a class rank of 1 out of almost 500 students. You were there when I, a novice, self-taught violin player, made it to the district orchestra and played original Tchaikovsky. You were there when I won the city's story writing contest, beating out writers nearly twice my age. But, autism, you were also the cause of some of the deepest, darkest times. You are much of the reason that I have lost nearly every friend I've ever had. You're close by when I have lost my words but am filled with emotion and a need to express myself. You've caused me to be called so many names... weird, freak, even the r-word that I won't type. You and I have had a love-hate relationship for as long as we've been together.



My feelings about you change from day to day, hour to hour. Sometimes I am grateful for the ways in which you've made me a unique individual. Sometimes I like that I see the world through a different set of lenses and have a different perspective on life. I love the way you've kept me young at heart when it seems that everyone else has grown up and, in my cases, become twisted or tainted. Goodness knows I'm thankful for the cats! It's not all flowers and butterflies, though; you've hurt me, badly. I hate that people look at me like I'm different. I hate it when people tell me I'm too difficult, too confusing, too weird, too much, too challening. It upsets me when I have so much to say but simply can't get the words out. I'm resentful of the way you keep me out of public places because they're simply overwhelming. You've kept me from normalcy, that thing that I desire above all else.



I wish that we could live more in harmony with one another. To be honest, I've struggled with you for so long, I'm not even sure what that would be like. I could do without the frequent melt downs, thank you, and I would love to fit into the small group at church that I "should" fit into, rather than not fitting into one at all. I wish that people could learn that what I am on my best day and what I am on my worst day is all one person. I wish that I could learn to let myself be... myself... in every situation, rather than forcing what I don't feel.



Don't you see how great it would be if things could change, just a little? If I could go out in public to do what I need, and even want, to do? If the melt downs calmed down a little? If all the comorbids simply fell away... or, more realistically, if I could work at them until I beat them? The anxiety, the OCD, the eating disorder... all of it, gone. If people were more understanding and accepting? If I could just be me? If I had the words I needed, when I needed them, reliably? If I didn't have to talk when it literally makes me sick to do it? If we got rid of the hitting, biting, picking, rocking? Life would be better if we weren't so at odds. I could have freedom, and you could be a success story... how autism helped one girl "make it."



I know you're hesitant to change-- heck, you're in part defined by a love of routine. But you know, autism, look at all the good that has come into our lives because of change. We were terrified to move out and come to this apartment, but that has turned out to be fantastic. And going to college (then coming home on breaks, then going back, then graduating)... every single one of those changes was a challenge, but look how much we learned in college and how much better able we are to use our mind for it. And adjusting to partial was certainly hard, but that has been a huge, huge blessing. Change isn't all bad.



I'm so confident that we're going to be okay. I truly do need you, or I wouldn't be who2re for backup. There's Elsie, who means the world to us and loves us totally unconditionally. There's L and T and K and C who provide Waiver services, ABA and community inclusion and all that jazz, who are helping us. There's Jannette and Dana and Dana (yes, both of them, too) who want to see us get better. There are our friends, Leigh and Chloe and Heather, who are here for us no matter what. These people will help us. They won't give up on us.



So, what do you say, autism? Can we give it a shot? There's a big world out there waiting for us, and it's time to find out what it has in store!



Lydia

Wednesday, March 23, 2011

Grammar lessons

I'm in an awkward position (what else is new?). I need to write. No. I REALLY need to write. It's in there. It needs to come out. So what's the problem?

Well, for once in my life, I don't know what to write about!

So... I'm going to write about one of my obsessions... the English language, or more specifically, spelling and grammar. Oh, come on. Maybe you'll learn something!

Lesson 1: Your and you're.

YOUR is a possessive pronoun. Your backpack, your idea, yourself.

YOU'RE is a contraction of YOU and ARE. It is most frequently used as a verb. YOU'RE impossible. YOU'RE autistic. YOU'RE mine.

And, YOU'RE welcome. Think for a second. If you were to say "your welcome," as most people write, you're saying that the welcome belongs to somebody. It is your welcome. What you really mean is YOU ARE welcome, correct? So. You're welcome. Got it?


Lesson 2: Its and it's

ITS is the gender-neutral possessive pronoun, so it implies belonging of some sort. ITS table. ITS book. ITS hair.

IT'S is a contraction of IT IS or IT HAS. IT'S not fair. IT'S okay. IT'S been nice.


Lesson 3: Maybe and may be

MAYBE is an adverb, so it answers the question "to what extent?" in a way. MAYBE we'll go to the movies. MAYBE you're wrong. MAYBE I did say that.

MAY BE is a verb phrase. It MAY BE okay. It MAY BE that we'll go to the movies. You MAY BE coming with us.

This rule generally holds true for other words that can be compound words versus two words, too. SOME TIMES and SOMETIMES. EVERYDAY and EVERY DAY.


Okay, I'll stop, because if you made it through that, I'm impressed. I can think of a million more things to teach you, but those are the ones that stand out in my mind right now and mistakes that I frequently see.

If you ever have a grammar question, you know who to ask ;)